Katlyn's Struggle with ADA SCID, DFSP and FLD

2012-01-06T14:46:00.004-04:00

I know. I know. I know. It has been ages since I have wrote anything about Katlyn. I think it is real time I got started at it again since it has worked so well in the past at allowing me to get all of these feelings off my chest. Things have been just a roller coaster over the past here. Here's hoping that 2012 is a great year for Katlyn. Here's hoping that she will finally get healthy.

So recently we had an appointment at NIH and things went pretty good. The much dreaded appointment was really going to be all about discussing how Katlyn's gene therapy is not working how it should, and what we are going to do as a plan B. Katlyn caught norovirus two years ago and she has been struggling with it ever since. Its at bay, but it just won't go away. It has really started to take its toll on her little body. She had been up to 57 lbs, and dropped down to 41 lbs. She is now anemic and does not absorb vitamin E. So Katlyn's parents, we decided it was time to do something about it, before the virus gets her very ill and its too late. Also, Katlyn has not been able to go to school this year. She is supposed to be in kindergarten, but it is just to risky to have her around so many children, so she stays home with me.

So Katlyn has been receiving IVIG orally. At first I thought it was outrageous!!! But it honestly has worked in making her feel better. Every time we put her on, she actually gains weight and doesn't feel sick all the time. Unfortunately it hasn't been enough to rid the virus from her gut, and she continues to live with it. So, our next plan of action is to put Katlyn back on Adagen. Hopefully that will be enough to rid her body of the virus. In the past we have always been told that giving Katlyn the Adagen would be deeming her gene therapy a failure. However, there is some new data that may suggest that there is a chance it may actually help the gene therapy to work. This makes us so hopeful!!!!

The problem with Adagen is that it is not available commercially and it is so so so expensive. Because it is not available in Canada, our insurance company said that they would not cover the cost. So our next approach was to ask the New Brunswick government for help. I was really shocked when they also said that they would not help with the cost. Typically this drug is covered under a provinces catrostrphic drug plan, but NB does not have one. So determined as we were, we appealed the insurance companies decision to not cover the drug. In the end they did indeed decide to cover the cost at 80%. At about $350,000/year, this would still be too difficult, but luckily there is a clause that says once our annual copay reaches $3000, the policy kicks in 100%. This is awesome awesome news!!!! Apparently we are supposed to come up with the upfront cost of the drug and then be reimbursed. LOL!!! Yeah, who has $30,000 just sitting around. Also, the $3000 copay would be on the first shipment. We still haven't figured out those little details yet, which stresses me out beyond belief. However, we did get most of it covered so far. I know its going to work out. I just keep praying!!!! We don't have that kind of money, even if it is $3000.

So once Katlyn gets this Adagen, she should be strong enough to get rid of the virus. This drug is a treatment for her condition, but not a cure. As her doctor recently told me, we need to look at it as a way to get her healthy enough to discuss the plan B. I don't even want to think about it. Every time I do, it just makes me so incredibly sad.

A bone marrow transplant.

For now, I am only going to focus on getting my baby healthy. Why she has to go through so much, I will never ever know. It seems so incredibly unfair. I am trying to just have faith in God. Its a challenge because sometimes I just feel so helpless, angry and sad. I have seen in the past though, that prayer is very very powerful. Now, she needs prayers more than ever. Happy new year everyone. May your best day of 2011 be your worst day of 2012.

It Sucks!!!!

2011-03-21T10:37:00.004-04:00

I know it have been ages since I have shared anything. Really, we were very busy just living our lives. Just doing our best to be as normal as possible. However now as I sit here, writing this post, I know that we always be anything but "normal".
When Katlyn's doctor first diagnosed Katlyn with ADA SCID, he told us that there are many many other things that can go with the condition, most unknown. I really needed to know what he meant, and he went on to describe behavioral issues among other things. At this point, I remembered Katlyn had never actually passed a hearing test, so I asked him if it was possible that she be hearing impaired. We immediately preceded in getting her properly and fully tested, and sure enough Katlyn was hearing impaired.
Since then, I've always known that other things may come along, but I don't dwell on any of it cause there's no point. I just have a "we'll deal it with it when it comes" mentality. I must admit though, the last few years have been very very frustrating to say the least. I have never met anyone as special as Katlyn. EVER! This little girl loves life and just looking at her makes me so incredibly happy. Yet she is constantly faced with new challenges in life. It angers me that she was born with the condition in the first place,but here she is 5 years old, and we are still faced with the fact that she cannot just go to a child's birthday party for fear she will get sick.
We recently learned that Katlyn tested positive for norovirus, and it is apparent that she is having a very difficult time ridding the infection. For sure, she has had this infection since December. This is a very very scary realization for us. It is possible that Katlyn could get sick, and not get better. So while we were trying our best to live our lives as normal as possible and allow her to live outside the bubble, we had to put the brakes on. This year Katlyn was able to enter pre-school. Her class is very small, only eight kids, but kindergarten doesn't look so promising. We attempted to vaccinate Katlyn, but we were unsuccessful.
Because of this virus, Katlyn has dropped a lot of weight and lost her appetite. She went from a chubby little 57 lb baby, to a skinny 41 lb little girl. After all her weight loss, her medicine was not properly adjusted (there is a lot of it too). I believe that because of this, one of her medications has caused damage to Katlyn's liver. She was recently diagnosed with non-alcoholic fatty liver disease.
So on top of her having a poor immune system, being hearing impaired, and having cancer; she now has fatty liver disease.
I was warned in the beginning that other things would accompany Katlyn's condition of SCID, but nothing could prepare for how I would feel now. It saddens me to no end that she cannot just go to school with all the other kids. I thought we'd be past all of this by now. Katlyn is five years old, and her immune system is still a terrible threat to her.

AND IT SUCKS!!!!!

Off to NIH

2009-10-03T07:42:00.002-04:00

I know that it have been way too long since I have been able to write on here. A lot has been going on since my last write up, which has made us busy busy busy. Well, for starters, I just started a new job, after not working for more than 4 years. I have to say. I really do love my job. However, i find it a challenge to be away from home all day. Since Katlyn and I have nver been separated since she's been born, it's torture to only see her for a couple of hours in the evening.
Katlyn is doing very well though. Her immune system is still not where we want it to be, but I can say that we have definitely started to live our lives outside the bubble. Katlyn has been sick twice, and both times she was able to fight it off. To be honest, it was very veery scarey for Johnathan and I. She was fine though, which shows us that she does have somewhat an immune system. And what Katlyn does have, works great! I don't really think twice nowadays if I need to go into a store, Katlyn comes with me.
On the other side of things, Katlyn recently had one of her tumors removed. We were not really expecting to hear anything other than we were successful in getting the whole thing. Unfortunately, that was not the case. We suspect that this tumor is probably bigger and deeper than any of her others. We went quite a bit deeper than we had with the last one, but still it was not deep enough. All borders of the part they took, are still positive for DFSP. So we go to NIH tomorrow so we can meet and discuss what our next step will be. Johnathan and I are still in favour of surgery if possible, as anything else could have a negative effect on her immune system. The way we see it, is that her immune system is the most important thing. Without it Katlyn would probably be very sick, and she may not get better. That is not a place we want to go. When you think about the possibility that everything we have worked so hard to achieve, could possibly be reversed because of a stupid chemo drug, it's very hard for us to think any other waay.
So off we go once again. To be honest, I have no idea what we are going to conclude. Is surgery even possible? Johnathan and I have discussed the fact that her first surgery was done in Canada by a Moh's surgeon and a plastic surgeon, and the scar at this point is barely visible. Unfortunately the second scar is not the same. She has a scoop in her skin from where they took the tumor. I think we're both in agreement that it's definitely beneficial having a plastic surgeon as well as a surgeon. I think they understand scars and how they will lok in the future, which gives us an advantage.
Katlyn is well though. She is definitely growing up. I cannot believe she is almost four years old! Wow! Where does the time go?
So I will do my best to get on here a little more often, to update Katlyn's story. Katlyn, you're my little angel, and Mommy knows everything is going to be fine!!!

2 years post

2009-06-03T08:23:00.005-04:00

So May 26 marked two years since Katlyn received her gene therapy. We marked the occasion with a routine visit to NIH. At first we were a little hesitant going because of the whole swine flu thing, but her doctors reassured us things should be fine. Plus the amount of precautions we take just in our everyday lives, it would probably be unlikely she would catch it. The airport isn't as scarey for us as it used to be. Most of the time, Katlyn wears a mask, especially when the area around her is more occupied. The rest is really simple. We just make sure she doesn't put her hands at her face or anything else in that area, since that's where germs enter your body. I'm really glad we are a lot more comfortable with travelling now, because Johnathan will be joining the Canadian Forces and it's possible I will have to take Katlyn by myself.
This trip was very enjoyable. It was nice to see the team of doctors that have got Katlyn this far. We were able to catch up with a lot of other families that we haven't talked to in a long time, as well as meet some very nice and interesting new families (including a family that is going through the protocol as we speak). I can really feel for them. Having your little one in isolation is not easy. I introduced the child's mother to my Katlyn so that she could see that although Katlyn's immune system isn't perfect, things do get easier. The 15 months Katlyn was in isolation was not very easy, but when we did finally come home, it was no biggie anymore.
Katlyn's immune system is about where it has been for awhile now. Her neutrophils are normal, which used to be our biggest focus. She is around 1600. Her lymphocytes are right around 200 and her cell function is normal. So that means that Katlyn does have a small number of cells, but what she does have is working just right. It was far from normal in the past, so this is very encouraging. Also we been given the green light to start some vacinations if we want. There is no way to check and see if they are taking or not because she is still on IVIG. But once she is done with that, we'll be able to see. Also we are now allowed to spend the night at the campground.
Besides that, it looks like Katlyn's next surgery will probably take place at NIH. They are talking about taking a 1 1/2 cm border this time of one, maybe two of the tumors. That will probably take place in about a month or so time. Also we are planning a much needed visit to the IWK. I cannot even remember the last time we were there, but it will be nice to meet with Katlyn's amazing team of doctor's there as well as catch up with some of our favorite nurses. It's hard to believe the IWK used to be like our home.
We have so much more freedom now. We are slowly but surely starting to live our lives outside of the bubble. We don't hesitate to take Katlyn somewhere now. She literally experiences new things and places on a daily basis. She has been borrowing books from our library as well as going fishing with her father. She spends pretty much her whole day outside enjoying every second of it. We were happy to finally have the yard to be able to get Katlyn a swing set. She loves it. Also we plan on putting Katlyn in swimming lessons this summer and maybe gymnastics in the fall.
We are truely loving every second of life. Yeah we have been through a lot, and still have a lot more to go through...but to be honest, we are truely truely happy. Life just feels so incredibly wonderful. We don't dwell on the negative things. Instead we focus our energy on the positives...and it seems like there have been more and more lately. Hopefully much more to look foward to.

2009-05-05T08:31:00.006-04:00

Sorry I have neglected Katlyn's blog for so long. We have just been so busy with life and have not had much time. Katlyn is doing extremely well. She has been sick twice now and both times, she was able to fight it all on her own...with no complications. The biggest thing I noticed is that it takes her longer to fight something off, but she has showed us that she is capable of fighting at least a little bit. Her counts are still low. We used to worry a lot about neautrophils, but Katlyn's neautrophils are more in the normal range. Her lymphocytes however, remain low for now. The good news is that Katlyn's cells, although a low number of them, function normally.
So as I mentioned in my last entry, Katlyn had her first surgery. The surgery was a success. According to two pathologist reports, the whole tumor is gone!!!!! The good news is we got away with taken a smaller border with the advice of a Moh's surgeon here. Because the tumors are so small, he wanted to see if we could get it all with a smaller border, and it worked. So we are looking at removing 1 or 2 about every six months. The surgery itself didn't really seem to bother Katlyn a bit. She never complained of the pain. If you asked her about it, she would say that it hurt but that she was okay. MY LITTLE TROOPER!!! So we have an appointment next week with Katlyn's doctors in Saint John to discuss what our next plan is. After that I imagine we'll book her next surgery.
Katlyn has been really enjoying life. We have been letting her do more and more things lately. She has also been playing a lot more with children her own age. We have however, put some stuff on hold temporarily while we watch this swine flu thing. Before if I needed to go somewhere and Katlyn was with me, she would come too. She was in Wal-Mart just the other day picking out her very first big girl bike...which I must add she's seems to have mastered already. But this swine flu thing has forced us to take a step back. Hopefully it will just blow over and is something that we don't have to worry about much, but we don't want to take any chances.
In other news Johnathan and I got hitched on April 27. It's something we have been wanting to do for a long time now, but we were just waiting for the right time. We have been together for more than seven years, and stuff just kept coming up. Most importantly we wanted Katlyn to be able to be there with us for such a special day. So we decided to have a very small, but very special wedding. That way our girl could be there too!
Other than that we are just enjoying the sun and the new house. Johnathan is currently outside this morning building a deck on the front of our house. I already have him booked afterward to build me a garden box, a garbage box and maybe more! We'll see! We are trying to get our yard in order so that we can have some grass. It's a huge yard though, and it's going to take lots of time and patience, but we are loving it!!! Especially Katlyn!!!!

Three Years Old and Surgery

2009-02-06T10:44:00.004-04:00

Katlyn had her fist tumor removed yesterday on her third birthday. What a day! We had spent the previous night in a hotel and because it was a strange place, Katlyn would not go to sleep. She asked us if the hotel room was our new house? lol. She can really crack me up. Anyway so after only getting a few hours of sleep we awoke at 5am and set off for the hospital. Everyone was so nice to us and Katlyn. I think they were especially nice because they felt so bad because it was Katlyn's birthday. Before if Katlyn had to go for any sort of surgical procedure, we would have to bring her in the OR and stay until she was asleep. This time however, she (being so grown up now) walked on her own with the nurses. When she was on her way she neared the corner away from us and all the nurses were singing happy birthday to her. She never even looked back at her very distraught parents. My stomach tightened and I could feel tears welling in my eyes. I looked over at John and I could sense he was feeling somewhat the same as me because I could see the pain in his eyes. Our little girl is growing up. It sort of gives me this empty nest feeling. She doesn't need as like she once had. She is brave and she can do a lot of this all on her own.
My baby girl was going for surgery. She wasn't scared to be going down the hall with a bunch of strangers away from her father and I. She never even looked back.
So the surgery was about 2 hours. Johnathan and I sat in the hall amongst other family member anxiously awaiting their loved ones to also be in the recovery room. I fell asleep on John's shoulder and I think he also fell asleep leaning on me. A few times I was was awoken by what I thought may be someone coming to tell us our little angel was all done and everything went well. Each time becoming more and more frustrated and worried because the procedure seemed to be taking forever. Finally, I hear "good morning," and open my eyes to the surgeon. He told us everything went very well and what to expect from Katlyn. he also gave us directions on how to care for her cuts.
Awhile later we finally got to see our little girl. Usually waking from an anesthetic, Katlyn usually does very well. She says crazy things and really the best way to describe her is a little mini drunken sailor. This time was different though. She was very upset. She was screaming and screaming. I could once again feel my entire body fill with tears. I was so scared. It seemed as though she was in so much pain. While the nurse was getting a look at her incision sites, it really took me by surprise how large the one was that they took a tumor. I guess I didn't expect it to look so long.
About a half an hour later the anesthetic started to wear off and we soon realized that the cries from Katlyn were not pain, but just the anesthetic. What a relief. I thought we were in for a lot of terrible pain. Pain I cannot really describe.
So Katlyn was quickly released from the hospital and so far I have not had to give her anything for pain. I wonder if it's just because of nerve damage and things may seem fine now, but pain will come. Where they took the tumour it is so bruised and swollen. It makes me want to scream and cry. I am really having a hard time with the fact we took something that seemed so innocent and subtle away from her and traded it for a big gash, all swollen and bruised.
She seems fine though. This morning she said her boo boo hurt. She wasn't crying or anything. She just told me matter-of-factly. I gave her a little bit of codeine a she hasn't said anything again. I just don't want her to be in any pain at all.
So we go to NIH at the end of this month. Hopefully, by that time the tests from this tumor are back and we're told they got the whole thing. At that point I will get excited because Katlyn will no longer have 13 tumors, she'll have 12.

2008-11-28T10:48:00.003-04:00

We just back from Katlyn's appointment at NIH yesterday and things went really well. Apperently they have been looking at some of their other patients with ADA SCID for the DFSP. Surprisingly it seems as though they are definetly linked with Katlyn's condition. They checked out 6 of their other patients and 5 of the 6 also have DFSP. The very interesting thing is that these patients also have multiple tumors just like Katlyn. Where it seemed impossible before for Katlyn to have 13 of these tomors because it has never been reported that a patient has had more than one, it is just comfirmation that we have the right diagnosis. Also one of the patients is 10 years old so it lets us know that these tumors are not going to go crazy tomorrow and we do have time to surgically remove them. They are offering their patients three options; they can have Moh's surgery, chemotherapy or they can just be under observation. We feel very comfortable with surgery, which will be happening any day now. Usually with Moh's surgery they will take a 3 cm border around the tumor and deep to ensure they have gotten the whole tumor. because Katlyn's tumors are so small, the doctors are going to try a 1 cm border with the first surgery. For that reason the first surgery involves taking one tumor and then taking a close look at it to see if it will work. The surgery will be any day now and we're pretty anxious to get started.
Besides that Katlyn's lab results to indicate some change. For starters, for a little girl who didn't have any ADA activity before, she is now 2/3 normal. What does this mean. Hopefully it means that the ADA gene will filter her body of toxic matobolites and she won't have anything killing off her cells. At this time her numbers are still low, but we are confident her lymphocytes should take off at anytime now. For a little girl who usede to have a lot of problems with her neautrophils, she no longer does. Everything seems to be taking its time, but overall things are getting better. Someday I believe Katlyn will be deemed normal and healthy.
So her doctor's in the US think she should get her flu shot. It came to a surprise to us, but they say it won't hurt her and there is a possibility it may work. Also we no longer have to take Katlyn to the hospital for regular blood work. They said there is no reason to check her any sooner than her appointment next time in February. So unless something comes up we will no be going to the hospital as much anymore. Lastly, the doctors also feel as though it's time we start to try and get Katlyn off IVIG. She has shown signs she is starting to make her own antibodies. We will not know if she's ready to be off the IVIG unless we try. So we're going to just start going for longer periods of time between each infusion. It's a bad time of the year so stopping completely isn't a good idea but going for six weeks and then longer and longer is what they suggest at NIH.
Katlyn is doing very well. We believe it's possible she got her first cold. All we know is that her nose was runny and she compalained of having a sore throat. That has all got better though....on its own!!!!

2008-10-15T11:05:00.003-04:00

I know it's been awhile since I've updated Katlyn's blog. Usually it's because there isn't really much to report. This time however, we have been very busy. Katlyn had a terrible accident involving her feet. She is okay and they look really great now, but it's been a long process. You see, a couple of weeks ago I was getting Katlyn ready for her bath. This involves me first disinfecting her bathtub and then waiting 10 minutes. After that it's all clean and I usually give her a bath. On this day, events took a different spin. After disinfecting Katlyn tub, she was pretty upset because she didn't want to wait. It's not really unusual for her to be upset because she loves the bath so much. So anyway I had 10 minutes until her bath, so I tackled a ripped bag of garbage. I was taking it into the hall and cleaning up the mess. I could hear Katlyn crying, but I just thought she was having a temper tantrum. Then her screams worsened. I realized that usually by this time she would have either stopped crying or come to me. So I went to investigate. I couldn't hear much because our HEPA machines are always going and are quite noisy. As I rounded the corner to the bathroom I realized the water was running. I soon as I got to Katlyn she grabbed on to me and pulled herself out of the tub. Her feet were very red, but I didn't really know how bad they were. I quickly grabbed a towel and wet it in cool water and wrapped Katlyn's feet in it. I proceeded to the tub and stuck my hand in and it was dangerously hot. I looked at Katlyn's feet and the skin was beginning to loosen, automatic blisters.
I had no idea what to do. She was screaming so loudly and I could tell she was in so much pain. John was at work and I'm not very familiar with burns. So I called 911. They came a short time later and brought Katlyn to the hospital. Once there they gave her pain medication and wrapped her feet. She has first degree burns to the bottoms of her feet and second degree to the tops. She was then airlifted to the IWK. She stayed there about a week and we are home now. A nurse comes in everyday to change Katlyn's dressings and they are looking very good again. She will need changes for a bit longer but everyday is progress. She has started to walk again but she still has a limp.
As far as Katlyn's cancer goes. I think it's looking like she will have her tumors surgically removed. I can't say for sure, but it seems like we are leaning in that direction. She will have an appointment at the end of the month is Saint John with the surgeon to see if he can do it and how he will go about doing it.
She is also set to have her IVIG treatment in Fredericton this month as well as a hearing test. Also at the end of next month she will be going back to the US for a checkup. Hopefully soon we will know what form of treatment Katlyn will get, and soon it will be underway.
Her immune system seems about the same. Her neautrophils are around 2000 and it's hard to say where her lymphocytes are. Her doctors think some monocytes are mistakably being counted, when they are actually lymphocytes. The number we get is around 150-200, plus possibly more.
She has been doing very well. She's been talking so well. Actually I don't even know where she learns the things she does. New stuff everyday. We have been baking a lot. I actually find it to be a huge stress reliever, and everyone seems to love the yummy freshly baked goods I make.
We are looking forward to Halloween this year. We will be taking Katlyn trick-or-treating to some of our families houses. Katlyn has never experienced any of that before so it is a new exciting experience.

2008-09-09T10:15:00.004-04:00

So since the last time I've made an entry Katlyn's Chemotherapy has been put on hold. I guess the biggest reason being that the doctors want to make sure they are making the right decision with her treatment. There is a clinic at Sainte-Justine Hospital in Montreal that deals with DFSP. Because they have the most reported cases of children diagnosed with this cancer, her team of doctors at the IWK and NIH made a decision that they should have a look at Katlyn's case. They have already requested photos of Katlyn's tumors and we're just waiting to see what the next step is. It's possible they may want to personally see our little girl, or it may be they agree with Gleevic being our best option. Or maybe they'll be able to give their recommendation just from speaking with her doctors and reviewing the photos. Who knows??? But until they make a decision we have no choice but to sit back and wait.
I'm not really sure myself what would be the best treatment plan for Katlyn. She has at least 12 maybe 13 of these tumors, so surgery seems unrealistic at this time. She is only two-years-old and I don't like the idea of her having so many large holes in her body. We're talking about three cm borders around the tumors and deep. Gleevic seems like a good idea to control the tumors, maybe shrinking some and making some disappear. Maybe then surgery would be a lot more appealing. But on the same hand Gleevic could make Katlyn's counts drop. Although her counts are far from normal, we have waited 16 months for them to get where they are today. I can see why this is such a difficult decision for her doctors. There has never been a reported case of multiple primary tumors like Katlyn before. I do know however, that because of how careful everyone is being they will make the right desicion. God will help point us in the right direction and he will give Katlyn the strenghth to beat the odds once again.
When something like this happens to your child I think it really puts your faith to the test. There has been so many times I have been so angry losing all faith. From what I have seen with Katlyn is a blessing and a miracle and definitely makes my faith stronger than ever. The big guy will help us through this difficult time.
It is really setting in that our little girl has cancer. I've tried my best to educate myself about DFSP, the same way I did with her SCID...and truth be told it does help. I can sit back in the dark or I can familiraize myslef with what is going on here. I rather know everything I can. Cancer is a scarey word, but the more you educate yourself I think the better you can deal with the facts. I contacted the cancer society and they gave me a phone number for the cancer hotline. They are a lifeline, available with information and support anytime I need it.
Don't get me worng though. It still scares me and saddens me that after all Katlyn has already been through in her short little life, she still has to deal with this. I do have a lot of confidence in her doctors at the IWK and NIH, and I feel they will be there for Katlyn in everyway...just like they always have. Katlyn's doctors are the best and I am so grateful to all of them for helping Katlyn surpass all she already has and and helping again with her DFSP.
Katlyn is clinically doing very well. Her counts are still about the same, but don't seem to drop quite as low as before. Her neautrophils average around 1500 and her lymphocytes around 200. All in all, she is getting strong everday and someday she will be deemed healthy.
The house is comeing along nicely. There is currently a large whole in the ground where our house is soon going to be. I think it is going to go up pretty quickly. We learned last evening that we will be using insulated concrete. This is great news, since the block is a lot more energy efficient. It's my understanding that it is concrete surrounded by foam, to basically seal our home. John understands it more than I do. I just know that he is extremely excited.
I have done a little fundraising for our home with habitat for humanity so far and it's really difficult to understand that all the fundraising is being done for our home. All the volunteers are there to help us. What a great bunch of people. I know I will continue to work with habitat for a long time to come. It's so much fun working with such terrific kind people for such a wonderful cause. I look foward to not only haveing our home built, but helping with the next home as well.

Habitat for Humanity

2008-09-08T11:01:00.000-04:00

GCSF

2008-08-05T09:35:00.007-04:00

The little man on Grammy Shirley's porch. Katlyn really took a liking to him and his Canada flag.

Katlyn in her new pool at Grammy's house

Katlyn needing to sit by herself on the shuttle at the airport in Portland. It din't last though.

Katlyn realxing after she woke up from anaesthesia.

Well as you know we have to take Katlyn to the hospital for bloodwork and adminmister GCSF every Monday and Thursday. We intended on getting the nurse to help us with the GCSF at the same time we were getting bloodwork done. Things dind't really work out that way though. Yesterday was a holiday and getting the blood work done was hard enough. We had no choice but to bring Katlyn home and give the GCSF ourselves.
I have never given a needle to anyone before. I was way too scared to do it. Johnathan was in charge of the important task. When he was getting all the supplies ready, Katlyn asked me what he was doing and what she was getting. I was honest and then she asked if it was going to hurt. I try to always reamin completely honest about things as I can. That way Katlyn will trust us through it all. I told her it would hurt a little for a sec, but then it would be okay. She asked me what she was going to do. I told her she was going to be strong and brave and then it would all be over. She said she needed a band-aid on it.
It surprised me how Katlyn was with the whole thing. It seemed as though, although it was obvious she wasn't that thrilled to get the needle in the first place, she was more relaxed with Johnathan and I. I think the trust we have worked so hard to maintain with her has paid off. She knows we will tell her the way it is, and we wouldn't hurt her.
What a tough little monkey.
The GCSF did work very well and the doctor said on Thursday we should take Katlyn for blood work and hold off on the GCSF until we get the Go Ahead by the doctors. It may be only necessary once a week instead of two. So it looks like we will be administering her GCSF shots, but cutting them in half will definitely help.

A little Coffee Break

2008-08-01T21:19:00.011-04:00

Johnathan received a New Brunswick merit award and we're so proud of him. This is him all dressed up in his fire fighter dressy uniform. What a handsome Daddy.

Being a patient little girl waiting for Doc's

Playing with the exam chair. Making Dad go up and down. It was pretty funny

Katlyn playing in the playroom at the Children's Inn.

I know most of you have noticed I have changed the name of Katlyn's blog. Over the past few weeks we have learned that Katlyn has a type of cancer called Dermatofibrosarcoma protuberans or DFSP. This cancer typically grows very slowly and therefore is thought to have benign like activity. I found out for the first time yesterday that any type of tumor that has the capability of metastasizing, is malignant. I never thought in a million years I would have to hear those words, especially referring to my sweet angel Katlyn.
It's very strange. We have been learning more and more about DFSP. Everything is the same, nothing has changed. But I have just learned my little girl has cancer and it's malignant. I want to scream at the top of my lungs. I'm angry, sad, scared.....well I'm everything. I just want Katlyn to be okay and nothing else matters.
While we were in Maryland a CT scan was performed and no tumors were found on Katlyn's organs. Thank you God. They did however see possibly a new tumor that we thought was a scar. So if the new one turns out to be one, she has 13 known tumors. Otherwise maybe 12, for sure 5 have been biopsied at this time and they are defiantly DFSP.
We were in Maryland all week and during that time were talked a lot about a treatment plan for Katlyn. Usually with DFSP, the ideal treatment would be Moh's surgery, where they cut a 3cm border around tumor and deep. With one tumor, this may be possible. But when you're talking about a two-year-old little girl with 12 or 13 of these...It would be outrageous. Oh and I'm not sure if I've mentioned this before, but Katlyn is the only known patient to ever have multiple DFSP. This type of tumor is very rare, and what makes Katlyn's even rarer...is that she is the only known patient with so many.
I will do my best to find some easy to understand stuff about Katlyn to share on here. Until then the best way to describe things. To understand what happened you have to get to a molecular level. Basically what happens if you can follow me is that well picture chromosome 17 as red and chromosome 22 as green. Let's just say a piece of 17 (red) breaks of and 22 (green) breaks off and then they switch places with each other. This process is called chromosomal translocation. No one knows why this happens, but that is what causes this cancer. Now what holds the newly formed chromosomes together is what you call a protein fusion.
I know I know. Crazy stuff.
Anyway. Since surgery is not a practical solution at this time, we are going to start Katlyn on a drug called Gleevec. Gleevec is a special type of chemotherapy drug that is FDA approved for DFSP as well as a couple of others. What makes Gleevec so special is that unlike most chemo drugs that destroy everything in their path, Gleevec is a special drug in the sense that it is more targeted. It goes straight to the protein of this cancer and blocks it. If it works these tumors should start to change pretty quickly. She may need to have surgery on at least one now, and possibly more later...when surgery looks more appealing.
Gleevec does have all the same side effects as other chemo therapies, but these side effects I guess are mostly on paper. She may experience some nausea, but the side effect that concerns us the most is that this drug can suppress the bone marrow...specifically white blood cells. The white blood cells are what we have a problem with already. Neautrophils and lymphocytes may drop. If Katlyn drops below 1000 neautrophils, we will put this drug on hold. To ensure that Katlyn is at a nice safe level, we will also give Katlyn GCSF twice a week for at least the next month. The shots may slow down later on. GCSF is a bone marrow stimulant, specifically targeting the neautrophils. The doctors felt it was best to stabalize Katlyn's neautrophils first instead of waiting for problems. We have been given some of this medication to administer at home. I think I will do it in front of the nurses at the hispital for awhile. I am confident I can give it, I just want practice too.
Besides that, we'll be checking Katlyn's blood work twice a week and going back to NIH every three months min. As well, she will still meet with her doctors in Canada.
I must say, just like Katlyn's SCID, I am learning that you need to be educated about your child's illness. It seems as though the more you know, the less scared you are.
I am by no means not scared. I just know a lot more about the subject and I'm confident Katlyn, our little angel, is going to be fine. She does have another fight ahead of her, but she is a fighter and she will fight DFSP as well.
Please keep my little girl in your prayers.

Up Up and away

2008-07-15T22:04:00.005-04:00

If you are a returning visitor, you may notice I have redesigned Katlyn's Blog. Hope you enjoy!!!!

So here we go again. It seems like we only just got back from our trip to Halifax...well...because we did just get back from our trip to Halifax. We thought our next trip to Maryland would be at the end of August, but we were surprised to learn they wanted us there quicker. The want to do a CT scan of chest/abdomen/pelvis to make sure the DFSP has not metastasized. Basically what that means is we want to make sure Katlyn is tumor free inside.
Although, we hate the travel overall and hospital stays are a drag, I think we are looking a bit foward to this trip to NIH. The questions remains in our minds and we need to know. The longer we wait, the longer it is going to drive us nuts. Besides, we need to get moving fairly quickly to come up with the safest and most effective treatment plan for Katlyn.
Wow. Writing all that really seems unreal. News like this alone would make a parent crazy. I know a lot of people have been praying for our sweet little angel, and I believe the power of prayer is one of our helping hands. Please continue to pray for Katlyn. She will not only get stronger with her immune system, but she will fight these tumors as well.
Our baby girl is going to be okay.

Our last visit to IWK

2008-07-07T11:49:00.002-04:00

Sorry I have been home for a few days and still not given an update on Katlyn's progress, but it has been amazingly beautiful outside and we were having a blast. Today is also a very nice day, almost too hot and I'm just waiting for the shade to settle on some of the dooryard, so Katlyn can safely play without getting overheated.
This visit Katlyn got IVIG as usual and the day went pretty good. Her needle did slip out of her port, and a large quantity of fluid had built up under her skin, but after applying warm compressions...all was well again. The highlight of our trip was getting confirmation that all of the marks on Katlyn are in fact the same type of tumor, Dermatofibrosarcoma protuberans or DFSP. I guess the news did come as a bit of a shock because we did still remain optimistic that they other marks were nothing. I think we all kind of knew though, because of the similarities that there were more than one. So it looks like Katlyn has 12 of these tumors.
Everyone is trying to come up with the right treatment plan for Katlyn, the trouble is, Katlyn is the first patient with multiple DFSP tumors. So far only one tumor seems to have a nodule in it. It seems as though Katlyn will be possibly having Moh's surgery to that one. Moh's surgery involves cutting a border around the tumor, not sewing Katlyn back up until a stain of that skin is done to make sure all the surrounding skin is tumor free. If it wasn't she would be brought back and they would cut more, until the felt confident they got it all.
Katlyn has an appointment at the NIH at the end of August and we will not be doing anything until she has a CT scan. The doctors have no reason to believe that these tumors have metastisized, because the chances are pretty slim. But we all want to be very sure. They want to have the full story before starting any kind of treatment. In the meantime, we are trying a ointment called Aldara. Aldara is actually most commonly used for genital warts, but is more recently being tried for malinoma cancers, leaukimia and other types of cancer. I don't think it's been used for Katlyn's type of tumor. This cream is applied to the tumor three times a week and what it does is put up flags for the immune system to go directly where the cream is and fight. We are hoping this cream will do the job. If it does it can save Katlyn surgery, chemotherapy, radiation and any other treatment they have in mind. Because Katlyn is immune compromised, using these drugs or surgery could compromise her even more.
On the upside, we have not noticed anymore tumors. Hopefully they are done appearing. The doctors don't seem worried that Katyln isn't going to do well. We remain very optimistic that everything is going to be fine. Katlyn is a fighter. She has been fighting since the day she was born and she will continue to fight and overcome this as well. I hate to see her have to go through this on top of everthing she has already been through, it breaks my heart, but she is going to be okay.
We should start building the new house next month. We are so very excited!!!! This is going to be so great for us. This apartment is just too small for us. It will be nice to have a lot more space. It has been confirmned that the house will be in Centreville, we're just a little confused about where it will be.
Katlyn has been loving the beautiful weather. She has been spending a lot of time swimming. When we were in Moncton it was really easy being at the pool to get her in the water. Now I find it a little more difficult. The local pool is just way too busy. We have been lucky that Aunt Phyllis and Uncle Ted have been so kind enough to have us over the past couple of days. Their pool is beautiful and we are extremly gracious to be welcomed into their home. As Katlyn's mother, I strive to make Katlyn's life as normal as possible and swimming is just another one of those things I love seeing her enjoy.
Yesterday was a beautiful day. When we woke up, I packed a picnic for us and then we picked Haley up and when to Sam's park. The girls fed the ducks and fish and had a great day of play in the park. We even went on a nice nature walk, being sure to stop and point out all the beautiful things on the way. The girls loved it. Then we enjoyed a nice BBQ with Sandy, Duncan and Katlyn's cousin Jonathan. And then we ventured over to Ted and Phyllis' pool and had a blast. What a great summer day.

2008-06-17T11:59:00.002-04:00

Once again, I am so sorry it has taken me so long to update Katlyn's progress. I have been very busy with Katlyn outside because the weather has been so absolutley beautiful. We are loving every minute of it. We still have not heard anything back about Katlyn's skin. I do know they had a few places they needed to send the samples, so that would take time. She has an appointment at the IWK on the 26th, so hopefully we'll know something by then.
All of her biopsy sites have healed very well and no infection has occured. The last time I wrote I talked about the unfortunate event of a medicine making Katlyn's numbers drop. Well, we believe that she is past that now. Her latest neautrophils reading was 1400 and her lymphocytes finally broke 300. We are so excited about this new number and hope to see it even higher at Katlyn's next appointment. This trip we will be spending about a week in Moncton with my mother and we are so excited. Sadly, Canada Day marks the anniversary of when my brother passed away, but I believe we all need to be together to make this year as easy as possible...especially for my mother.
Lastly I would like to mention that fairly recently we put our names in for a new home with Habitat for Humanity and last night we found out they had selected us. So pretty soon the new construction on our new home will start. It seems totally unbelievable. I really didn't think they were coming to tell us that last night. I had no idea. What an amazing surprise. So someday soon, Katlyn will be living in the cleanest safest possible home for her. I am just thrilled. Thank you so much Habitat for Humanity for all the work that you do, and for choosing to help us.

HAPPY TRANSPLANT DAY!!!!!!!!!!!!!!

2008-05-29T10:13:00.003-04:00

It's been awhile since I have updated Katlyn's blog, but there has been reason. Last week we had a visit at NIH and we were very happy to see that Katlyn's neautrophils were climbing and staying within normal range. She reached an ultimate high of 3600. We were very happy about this. Katlyn received her IVIG last Tuesday and everything went well with that. On Wednesday Katlyn was brought into the OR where she was scheduled to undergo four biopsies on those spots I have mentioned. Everything with the surgery went very well. A couple of hours after the surgery we were notified that Katlyn's neautrophils would probably drop because she was given a type of medication that Katlyn has been shown to be sensitive to in the past. It is standard practice for a patient to be given something during surgery to reduce the chances of infection. Katlyn apparently has been given this medication in the past and it has caused her neautrophils to drop possibly. You see, Katlyn was having a problem with her neautrophils anyway, so they didn't know if it was an effect of the medication.
So we checked Katlyn on Thursdasy morning and she had indeed dropped down to 600. By that evening she had gone up to 800 and so we came home on Friday morning. You see, 500 is the safe mark and they would have kept Katyln is she dropped below that. So we checked her again on Saturday and she climbed back up to 1400. The newest count was yesterday and she had dropped. We thought the effects of the medication were over, but a count of 470 says otherwise. So now we have to keep Katlyn even safer. We can't go outside if it's windly, or around freshly mowed grass. We have to watch her very closely and take extra care and caution right now. I will be taking her again for bloodwork on Monday and hopefully things are looking better.
On the plus side, Katlyn is feeling great. A couple of her steri-strips had fallen off one of her spots, but while I was at the hospital yesterday they fixed it. The nurse also took a look at all of the other spots and said they looked good.
Now here's the very exciting part. Katlyn toxic matobolite level was down to 0.8%. That is what kills off her cells and why she has no immune system. Because Katlyn has a defective ADA gene, her body doesn't usually filter those toxins. Obviously, Katlyn is having ADA activity because thos toxins are being moved out. This is great. This shows her gene therapy is working and it's only a matter of time and her cells will come up stay up. I beleive that someday soon, Katlyn will be healthy.
Katlyn is happy and well. The 26th marked one year since her transplant, and I just can't belive it's been a year. In some senses it's been a long time, in some other ways it passed very quickly.

Happy Mother's Day

2008-05-12T10:04:00.003-04:00

Katlyn is doing well. I took her for just routine blood work on Friday and the doctor called me that afternoon to ask how Katlyn was doing. He probed me with questions as to how she was feelings. Initially, I was a bit worried about the nature of his questions, until I realized he was asking because Katlyn counts were very good and he just wanted to be sure it wasn't because she was sick. He told me her neutrophil count was incredible, at 2500. This is incredible. For those of you who have read Katlyn's blog all along, you know that Katlyn has always had problems with this number. She had to be at 1200 in order to participate in gene therapy, and it took us 8 months of trying different things to get her to that point. A count of 2500 is amazing because she has never ever been that high and that count is very very normal.
Secondly he told me that Katlyn lymphocytes count was about 170. She has been running around 100, so this is also progress. Like I have mentioned, we still have a long way to go. A normal lymphocyte count for Katlyn would be around 4000, but thinking back to when Katlyn was first diagnosed at 6 months old...she had no lymphocytes. All of this news is very encouraging for us. On May 26 Katlyn will be 1 year post gene therapy, and it's nice to see that she is still going up. She seems to take jumps every onece in ahwile and when she takes these jumps, she goes higher and higher. The last jump I believe brought her up to about 1200. Whenever we get news like this it helps reaasurre us that Katlyn's gene therapy is working.
So we will be heading to Maryland a bit earlier this month. We will be travelling down on Monday the 19th and staying for about a week. This time, Katlyn will be spending her time in the hospital as she will be having surgery. They are going to biopsy three of her tumours, because they feel they need to find out more information about these tumours. As I mentioned before, the type of tumour that they found is a very rare type of tumour and a patient has never had many like Katlyn. We have counted 12 marks in all so far. So they will be checking one of her chest which feels as though there is a node in it. There is also one on the back of her leg that seems to be changing in appearance. And the third one will be one that we have noticed very recently. They want to take a look at all of these and compare them. Hopefully we'll find that none of them are tumours at all. Time will tell what all these marks on our daughter are and I remain sure of myself that my little angel is going to do great. Katyln is a fighter and she is going to get through this as well.
Mother's Day was so great. Johnathan and I took Katlyn outside for a nice little picnic in the park and then we went for a little drive. Once we came home we played outside for a while, rolling down the hills and playing hide-and-seek around the trees. It was very fun. Recently, Katlyn and Haley helped me to plant a couple of flower pots and I noticed they sprouted yesterday. It was pretty neat because it ended up kind of being a Mother's Day gift will out it meaning to be. I also got two very nice summer outfits which I absolutely love. And the greatest Mother's Day gift of all was looking at Katlyn and seeing how happy she is and how far she has come. I am so proud of her. I am so happy and proud to be Katlyn's mother.
In closing of this post I would like to mention my mother and John's mother. They has been so great through all of this. They have helped us in every possible way they can. We are so lucky to have them. My mother is very far away from us, but she is always helping us. Wheather it's an ear to cry in or going on a long trip to Halifax with me, she is always there. Thanks MOM. Johnathan's mother is also very supportive. Thanks for everything you do. Wheather it be picking us up water or something else we need when your out and about or listening to us when we just need to vent. You are incredible women and we are so very lucky to have you as our mothers. Thanks for everything you do!!!!!!!!

I love the Colonial Inn in Moncton, NB

2008-04-21T11:19:00.004-04:00

I know I know. It has been a few days since we have been back from our trip to Halifax and it is taking me a while to update Katlyn's blog. Well, I'm happy to announce the reason for my tardiness is because Katlyn and I having been spending most of our time outside. The weather has been just absolutely beautiful and so we have been taking full advantage of it. Katlyn has been flying her kite as well as playing with her chalk and on her bicycle. She enjoys walking with her father to work and stopping to take in just about everything along the way. I know that most two-year-old children are very curious anyway, but with Katlyn's isolation I think she is even more curious of the world around her. She literally asks about everything at least 12 times. I love it. I have longed for the day when my little girl would be able to walk along and ask me what things are and be able to pick up sticks and rocks. It does sadden me that Katlyn is still not able to play with children and we can't go to the park and stuff like that, but I try my best not to focus on that stuff. Instead, I try to focus on what we are able to do now compared to last year. Last year, she was not even allowed outside and now we are spending most of our time out there.
So about the trip. This time Johnathan had to work so I took Katlyn on the long trip alone. We thought it would be a good idea to break up the trip by stopping Moncton before landing in Halifax. I don't really care for driving at night, especially with all the animals. So I set off on Tuesday to Moncton, stayed the night at the Colonial Inn and set off early Wednesday morning for Katlyn's IVIG in Halifax. It was about 3 hours away and we made it on time for her appointment. Mind you, I have never driven to Halifax before in my life. I did very good though. I actually feel quite a bit more confident about it now and I think I will take up driving the trip more often now. My mother works at the Colonial Inn and we are forever grateful to my mother who spent all the time she did getting Katlyn's room ready. The room was in tip top shape by the time we got there and we brought one of Katlyn's HEPA machines for safety. The manager of the Colonial is an angel. Anita, I cannot thank you enough. You are a great person and you helped us so much. Thank you!!!!!!! As well I would like to thank the rest of the staff at the Colonial for making our stay so great. You guys really make a person feel welcome!
So on Wednesday my mother came with Katlyn and I to Halifax. It went very smoothly. While we were there Katlyn got her routine blood work done, neautrophils 1100 and lymphocytes 100. She then got her IVIG infusion most of the day with no complications. During that time we met with a dermatologist who let us know that the tumor board at NIH did meet and they came to the decision that more information was need about these tumors. So anyway, there is talk about getting another biopsy. The dermatologist made a great point. She thinks that instead of just getting a sample biopsy, we should just take one. That way we will not have to worry about such tumor anymore. I like this idea because the tumors are not that big anyway, and I think it would be less of a hassel to just remove the whole thing. The type of surgery that may be used to remove a tumor is called Mohs surgery which decreases the chance of recurrence with these tumors. The lucky thing is we have a Mohs surgen in Saint John, which is only a couple of hours drive away. YAY!!!!!!!!! So we'll have to wait and see overall what they all decide.
Besides that, we had kind of been forced to wait five weeks for Katlyn to get her IVIG this time. All her levels came back fine, and if they did I knew this meant we could probably wait 5 weeks and instead of four before giving it to her again. I had been talking with Katlyn docotr this morning and he mentioned we may even wait six weeks. This is great news and I am very excited. So anyway I better go because Katlyn is having her lunch and then we are once again heading for the great outdoors.
Thanks a lot again to the Colonial Inn. I just love it there.

2008-04-06T09:29:00.003-04:00

This is Katlyn about 10 minutes after leaving the for our long ride to the airport.
This is Katlyn under her plastic shield at the airport
This was Katlyn's room at NIH this time.
This is Katlyn's old room where she spent 8 months. It's strange seeing it from the outside and empty.

I am so happy to report that I am feeling a bit better today. I just realized that we have no idea what is going to happen, and I was just spending way too much time moping around. Katlyn is a very strong little person. We have seen her overcome so many obstacles already and she's going to get through all of this too. Besides that, we still don't know exactly what will be taking place. Every since Katlyn was first diagnosed, a bone marrow transplant has always been a possibility. There is a possibility that she still might not have to have one.
Also, it's possible that all these marks on her body may not be the same thing. They know for sure that one is because they biopsied it, but the remainder are still unknowns until the same is done.
I have faith that everything is going to be okay. For now, I'm going to try and focus on the now. Katlyn is doing well otherwise, so I need to focus on that. The weather seems to be getting milder, so I think I'm just going to try and spend as much of our time outdoors as possible. Katlyn is pretty anxious to learn how to ride her bicycle anyhow.
On Wednesday we will have to take Katlyn to the local hospital for her RSV shots. Luckily they are the last ones for this year. YEAH!!!! No more shot in her legs. I'm sure she'll be very happy about that. Also, on the 16th Katlyn will have an appointment at the IWK. If Johnathan works, I will need to take Katlyn on my own. I have never driven that fall on my own before, but I'm sure I'll be fine. I may need to stop a lot to help Katlyn, but it's okay. We have a couple of ideas on how to make the trip even better anyhow.
Besides that we will anxiously await the news from NIH about Katlyn. She is scheduled to go may at the end of next month, but they let us know that that date is subject to change at any time.
Please keep our little girl in your prayers because there is a lot of power in prayers.
Thank You.
This is a model of the Clinical Centre. I think it would be impossible to get a picture of the real thing. It really is that big. It is the largest brick building in the world.
Here Katlyn is talking to the fish in one of the CHildren's Inn's very beautiful fish tanks
These rainbows on the floor are reflextions from one of the windows. They are everywhere at the Children's Inn. Katlyn is fascinated with them.
On the way home, we stopped for a break and Katlyn asked me if I wanted to go for a ride. When Johnathan got back in, the blinkers were going and the wipers and heat were on.

2008-04-05T08:57:00.002-04:00

This morning I woke and decided that I was going to try my best to focus on today. I have a very beautiful little girl and right now nothing is going on but worry. Maybe if I can just try my best to put all that stuff in the back of my mind for now, it may be a little easier. I know it will be difficult to do when all I can do is think about all the things we have been told. Last night was a very difficult night for for both Johnathan and I. He is currently working days, and he had such a hard time falling asleep, even though he had to wake up at 4:30. I didn't have an easier time either. I was very restless. The sleep I did get was filled with strange dreams. I really hate these feelings. I just want to know that everything is going to be okay and my little girl is going to be okay.

2008-04-04T23:36:00.002-04:00

With all honesty I am having a very difficult time right now. In the past I have found this Blog to be very helpful, so I guess trying to vent a bit might help. I am so absolutely utterly terrified right now. The position that we are in right now is just tearing me right up. There is absolutely nothing I can do. Nothing at all. The future is all I can think about. I think it is so hard right now because there are so many unknowns in our future, and not knowing if your daughter is going to be okay is so difficult.
Katlyn holds everything in my heart and sole. She is what makes me breathe and smile. She really truly is my everything. I'm sure people in our situation would feel the same way too. We are so close to so much danger and there is absolutely nothing we can do about it. I just want Katlyn safe. I need her here with me. Katlyn I just love you so much. I would trade places with you right now if I could. I really hate seeing my baby girl go through so much. It's hard.
She is only two-years-old and she has been through more than most adults. It just seems as though it's very difficult for her to get past all this sickness and live a normal healthy life.
I know the decision about what the plan for Katlyn will be, hasn't even been decided yet, but I'm just so scared.
We need a miracle. God please give us the strenghth to get through all of this. I know my baby girl is strong and I want to be right along side her, like I should. I'm Katlyn's mother. She is going to be okay. Katlyn is a fighter.

2008-04-04T09:14:00.003-04:00

The photographer that was taking pictures of Katlyn's skin was so kind to take a couple family pics for us. They are beautiful. Well, except for my hair. They were long days at the hospital, but who cares about my hair. I just love the pictures.

So we just got back from spending the week at NIH and right now feel nothing but confusion, fustration and worry. They are thinking that these spots on Katlyn are something called Dermatofibrosarcoma Protruberans or DFSP. These type of tumors are very rare and so far they have not seen a patient keeping getting more, like Katlyn has. I think there's about 10 or so of them now. Usually this tumor takes like 20 to 30 years to start becoming a growth. They mentioned that with Katlyn that could be difference between them taking so long to begin that process. Once they do start growing, they do grow very quickly and there is concern that they could metastasize to other parts of the body, the most common place being the lungs.
At this time they are still uncertain about what we are going to do to remove and control these tumors. Katlyn's doctors will have a metting in two weeks with the tumor board and hopefully a decision can be made so we can start the process of getting Katlyn better. While we were there Katlyn met with a surgeon, dermatologists and several oncologists. They will also be present at this meeting. It's possible Katlyn may undergo radiation, chemotherapy or surgically removing them, or a combination. In the past they see the most sucess with removing them, with a less chance of reoccurence.
The trouble is that Katlyn has so many of these. They think it's possible that this type of tumor could be linked to her condition. So far, they have found 5 other patients with ADA SCID who have had DFSP as well. All the other patients have had stronger immune systems than Katlyn's is. The tumors were found after their treatment and the immune system had started to restore itself. Some believe the immune system does play a role in tumor growth, and that the immune system is very important. Katlyn's doctor mentioned the possibility of starting Katlyn back up on PEG ADA, to help her immune system now. PEG ADA is not a long term fix and tests have shown the effects of PEG ADA do wear off. If they were to use PEG ADA, there is a great chance that it would basically void the gene therapy that Katlyn had. They do not know if a second time at gene therapy is a option or not. At this time they are not doing it multiple times, and Katlyn having these tumors could disqualify her anyhow. Her doctor also mentioned a bone marrow transplant might also be an option.
We are so stressed right now. We are so scared. I don't want anything bad to happen to my sweet little girl. I don't want her to have to go through anything else, with all that she has been through. But more importantly, I just don't want to lose her. It almost seems as though similar emotions that we had in the beginning are coming back, but this time are worse. We now know with experience, the kinds of things we are looking at. There's just no other way to put it. WE ARE SCARED!!!
Since Katlyn has been sick, I have really been able to see the power of prayer. Please keep our little girl in your prayers.

Happy Easter

2008-03-22T09:49:00.006-04:00

Katlyn is doing very well. She has actually just been upgraded from her highchair to a big girl arrangement. I turned around yesterday to find that Katlyn was about to climb out of her highchair. I was right there!!! She decided she wanted out, and as independent as she is, she was getting out. Luckily the change was simple. Katlyn highchair transforms into a little table and chair for a toddler. She really seems to like sitting there. She doesn't constantly say "Help!! I'm stuck!!!" It has been normal terrible two-year -old stuff around here. Katlyn has been really putting me to the test lately. It is actually very exciting to see what she will come up with next. I love it. She is very excited for the Easter bunny tomorrow. She knows chocolate will be available, and she's game.
We were suppose to be leaving for Maryland on Monday but that has recently changed. We will be leaving on April 1 instead. When we get there Katlyn will be meeting with a multidisciplinary team which includes a dermatologist, pathologist, oncologist and a surgeon. These specialist combined, make up the tumour board at NIH. When we get there, these specialsts will review all of the facts about these little skin marks that Katlyn has. They will also examine her and then have a meeting to discuss what they think they are seeing. It is possible that Katlyn may have a type of tumour that has never been documented before, including all patients not just SCID.
So we have no idea how long we will be staying at NIH this time. We don't know if Katlyn will be having these removed, and if so when? We are planning on staying until Friday, April 4 at this point. That however, is subject to change at anytime. We could be leaving sooner or maybe later.
This is putting a lot of stress on us right now. I think they believe that these tumours are benign. The scary thing is that immune compromised people are more likely to develop cancer than someone who is normal and healthy. So if these marks are in fact tumours. We would want to deal with them as soon as possible, because we do not want them to become malignant.
The part of all of this that is the hardest to believe, is that these marks have been present on Katlyn from before she was diagnosed and she has been getting more and more of them. It scares me to think that because they seemed so insignificant, they were almost not biopsied. Because Katlyn is immune compromised, doctors felt that checking them would pose a greater risk to Katlyn's life than just leaving them. Fortunately, one was biopsied and now we can work at fixing this problem any way we can. We are very lucky Katlyn's doctors are so great. We know they will take care of her, find out as much information as they can, and will do what needs to be done to make sure Katlyn is safe.
I will post as much information about what's going on just as soon as we learn something new.

2008-03-15T10:43:00.003-04:00

We just recently came back from a checkup to the IWK and will be leaving on the 24th to go to NIH. I thought now would be a great time to update about what has been going on. As I had mentioned before, Katlyn's skin had been sent to the expert in spindle cell tumors at Harvard. Well, apparently the expert says he does not think they are spindle cell tumors, but he does not know what they are. So at this time we still have no idea what the marks on Katlyn are. We only know that NIH sent her slides to Nebraska, the reason is still to be seen. Hopefully we'll have some answers when we get to NIH.
Since my last time writing on Katlyn's blog, her research blood results have come back. It seems as though Katlyn is making milestones with her counts now. She was at an all time high of 1500 neautrophils. Katlyn has never been that high on her own, without any drugs to push her counts up. The very exciting part about this number, is that 1500 neautrophils is a normal number. Katlyn has always had trouble with her neautrophils, so this is very exciting for us. Neautrophils will help Katlyn protect herself from bacteria.
Also, Katlyn's lymphocytes have been staying around 200, which as I mentioned before is the highest Katlyn has ever been. A count of 4,000 would be normal for Katlyn, but Katlyn used to have no lymphocytes at all. This is definitely a start. These cells will give Katlyn what she needs to fight a virus and such.
The ADA gene is still present in Katlyn as well. She is measuring 17%, which is where she has been. And the t-cell proliferation was around 17,000. This is the number that kept us in Maryland for so long. Katlyn had to be 10,000 in order to leave isolation.
All of this news has been very exciting for us. It is very encouraging to see things that we have never seen before.
Katlyn is doing extremely well. She is growing and learning at a normal pace, just like any other 2-year-old. She is keeping us very busy, expecially now that she has entered the terrible twos. I love it!!!!
We are starting to get in a routine around here, which makes it a lot easier to get things done. John works constantly and we miss him, but I know he just wants to take care of his family. And he is doing a great job at that.

Update on Skin (well sort of)

2008-03-01T11:52:00.005-04:00

Katlyn oftem picks up large items and carries them around. She's very strong.

My little lady

Playing with her little house

Just being adorable

I'm very sorry that it has taken me awhile to update Katlyn's blog. Johnathan is on nights right now, and it makes it extremly difficult for me. The computer is in the living room, where John is sleeping and I do not want to make noise and wake him up. As anyone with children knows, whereever you go your child follows. Katlyn is a very loud child, and I love it that she's so vocal. I just want daddy to be able to get his rest as well. Katlyn is eating her lunch happily right now, so I thought I would take a few minutes and update what has been going on.
As I had mentioned before, NIH had sent Katlyn's skin slide away to Boston to be analized by who they consider to be the expert in the world on spindle cell tumors. Well he took a look at the biopsy and said in his opinion it wasn't spindle cell tumors, but he had no idea what is was. I'm not really sure what to think of all that. I got the message from Katlyn's doctor in Halifax from her doctor at NIH. I think the best thing to do is just wait until we get back to NIH to discuss it and we'll know more what to make of it. Apparently they sent Katlyn's skin slide to Nebraska, but I don't know why or who is in Nebraska. I'm really just trying my best to put the whole thing out of my mind and just try to focus on day to day life.
As far as Katlyn's counts go she has been running about the same number recently, always around 200 lympocytes and recently being her highest of 218. Unfortunatley when we last checked Katlyn's lympocytes have dropped to 90. We were surprised by this result and hoping that it woudl have been higher. So we will take Katlyn for bloodwork on Monday and hopefully it has gone back up.
It seems as though this whole process is just taking so long, which it is. It's interesting though. I was taking to a doctor that had looked over Katlyn when she was first diagnosed and he was very surprised that Katlyn was doing so well. He said that she has come a long ways. A lympocyte count for someone Katlyn's age should be around 4,000 and like I mentioned she has been around 200. Well he said that Katlyn had none when he last saw her. I didn't know this. GO KATLYN. We still not heard anything about her research blood results, so we may just find out at her next appointment at the IWK. She we go there on the 12th and then to Maryland on the 24th. It is going to be a busy month.
OUr days are pretty much routine now. It is a hard adjustment with John changing from ddays to nights, but we're getting used to it. We are so proud of him. He has been working at his new job for a about a month now and he's got three raises already. Way to go Daddy. He does seem to enjoy it there too. We do miss him though since he works 12 hour shifts and when he is home he is sleeping. He just wants to take care of his family the best he can, and for that we are extremly thankful. Thanks so much Daddy.
Katlyn and I have been doing a lot of new things lately. She started to climb up the stairs yesterday. We have a lot of stair up to our apartment and she walked up all of them all by herself (I was right there though in case she lost her balance). Also Katlyn has been baking a lot with me and just recently made cupcakes all my herself. I did all the measuring and she added all ingredients to the bowl and with my assistance we mixed the cupcakes up. It was so cute. She had flour all over the place. She carefully lined the muffin trays and we put them in the oven. She was very surprised when they came out and thrilled when she learned she was going to be able to decorate them. SHe had complete control of icing and sprinkles. It was bliss. Also Katlyn has been helping me make supper too. I find it works great in making her interested in what we are going to have. One day she helped me prepare a shepard's pie and she did really good eating it for supper.
Other than that, Katlyn is just trying to be a normal 2-year-old. She runs around, plays in small tight spots and makes life so much better.
We love you so much sweety.
Katlyn in her apron and ready to start cooking

This is the Dora and Deigo rescue centre that Katlyn and I built. She loves it.

Katlyn's first brown bagged lunch

Digging for her sandwhich that she helped me make

Happy 2nd Birthday

2008-02-10T12:42:00.000-04:00

Katlyn is now 2 years old and cuter than ever. It really is incredible looking back on the past two years of life, seeing what she has been through, and how far she has come. It's incredible. Katlyn's birthday was spent at NIH, getting a large blood draw for research and an infusion of IVIG. We made up for it when we came home though. We had a birthday party for her, all decked out in Dora the Explorer. We felt nervous buying Katlyn a birthday cake, so instead I made one and it turned out great. I decorated after Katlyn went to bed so that when she woke up in the morining she would be surprised by all the balloons and party supplies. She was thrilled. Actually, the first thing she said was "that's crazy." She is so funny. John's parents came over and we had a great time. After we all had a peice of cake, Katlyn decided she was going to play with the cake. She started to drill her Dora figurines through the cake. You could really tell she was enjoying herself. All in all it was a fantastic day.
Right now Katlyn is enjoying a muffin when she asks me where her muffin went. I tell her she ate it and now it's her belly. She lifts up her shirt and starts rubbing her belly. "I checked everywhere." LOL!!!! A few minutes later she lets me know she found it on the tip of her finger. I look to find that indeed there is a little muffin crumb on the end of her finger. LOL!!!!
So the trip to NIH went pretty good. Katlyn's numbers were about the same. Her neautrophils were 700 and lymphocytes 218, which is the highest her lymphocytes have ever been. The rest of the test results will take a little time to come back, but I'll keep you posted. Other than that Katlyn biopsy for the marks on her body has come back and the sort of have a preliminary reading. Even still they are unsure of what they are seeing, because it is very rare. Throughout Katlyn's life we have been noticing these little indents on her body. They don't hurt, but as time goes on we do notice more. There are probably 9 or 10 known ones now. Well, the doctors seem to be leaning towards the possibility that these little marks are tumors. When they look at the slides they see spindle cells, which is very unusual. They believe that they are benign, and therefore as long as we get rid of them they shouldn't hurt Katlyn. So the doctors at NIH sent the slides to the specialist in the world in spindle cells. We're hoping to get a definite diagnosis soon so that these marks can be removed as soon as possible. We don't want them to become malignant, and threaten Katlyn's life again.
So right now we are pretty stressed out about the whole skin thing. We know that Katlyn is a little fighter and she will get through this too. It's just scary.

2008-01-31T17:00:00.000-04:00

So we started back up with the potty training again today, and so far a sucess. Katlyn made it to the potty. Yeah Katlyn!!!!!

First haircut

2008-01-30T11:19:00.000-04:00

Katlyn got her first official haircut last week by her auntie Kathy, who was so great and came here to do it. Katlyn fell over heels in love with her auntie and had a very hard allowing her to leave. Thanks Auntie!!

2008-01-29T22:50:00.001-04:00

So we are soon heading back to NIH. We leave here on Sunday, leave Halifax on Monday morning for NIH and then we'll back in Halifax on Tuesday. Once we get back Katlyn has to go to the IWK for treatment, which is about 6-7 hours, and then we have to drive back home, which is a 8-hour-drive. Really it feels as if we just came back from Halifax and already we have to go again.
Not a whole lot has changed since the last time I wrote. Katlyn's counts counts have been about the same. She has been around 700 neautrophils and 100 lymphocytes. We got the hopeful news that Katlyn's lymphocytes did go up a bit yesterday. She was 220. Hopefully she will keep going in the direction. It's really hard to believe that in a few months Katlyn will be a year post transplant. She is still extremely immune compromised, so we have to still be extremely careful. Aside from keeping Katlyn away from sick people and keeping our home safe and clean, we try our best to live as normal as possible.
Today Katlyn and I went for a little walk outside and she had a blast. John started a new job last week so we have been missing him like crazy. Since Thursday he has only had one day off and he is working 12 hour shifts. I know it's got to be hard for him too. You can tell he is so tired and misses us so much, but I know he is just trying his best to take care of us. Frankly he is doing a great job. We love you so much honey. Thank you.
Katlyn will be turning 2 years old on Tuesday. Wow!!! It really is so hard to believe. Our little monkey is growing up. I just can't believe how incredibly smart she is. She is so sneaky and has so much spunk in her and makes everyday a great adventure for us. She has just started to help me clean during the day, by bring me the clean laundry from the hall, trying to fold it, unloading the utensils from the dishwasher and picking up her toys. She is such a helpful little girl. She is also very polite too. She is all ways saying thank you or no thank you. We are so blessed to have such a wonderful little girl. Katlyn you are the greatest part of every minute, hour every single day in my life. I just love you so much. You are so tough.
I took her to get her blood drawn yesterday and she didn't even shed a tear. I had to take her by myself so I was a little worried about her keeping amused while I drove, but she was fantastic. She was laughing and having a great time. The ladies at the hospital are fantastic too. They gave Katlyn 3 stickers for being so brave and patient.
I will be on here real soon again with pictures of our grown up two year old. LOL. Every time I say that it feels weird. It seems like just yesterday that we brought her home from the hospital.Happy Girl
Little sweetie
I'm so hungry mom!!!! She spends a lot of time going in and out of the fridge.
The terrible two's coming on??

PLAYING WITH COLE

2008-01-18T13:25:00.000-04:00

Here Katlyn is playing the piano, which she is very good at.
Katlyn falling out of the bottom of the car while Cole stands by.
What a couple of cuties

So we came back from our trip to Halifax very late last night, or should I say very early this morning. We did not like the idea of leaving Halifax so late in the day because it is such a long ride, but they were forcasting for snow in New Brunswick so we wanted to get home before it started. I'd say it was a very wise decison too. Looking outside this morning I know driving home would have been very dangerous. There is so much snow out there already.
So Katlyn got to play with her little friend Cole. Cole was diagnosed with SCID as well and they were both in the IWK at the same time. During which time we became very close with his whole family. We were very lucky they opened their home up to us and allowed us to stay the night in order to be as close to the hospital as possible for early morning. Thank you guys so much. The kids had a great time. I know Katlyn will be very excited when we are going back and she sees Cole again. It was very nice to see Katlyn interact with a child her age, something she has never been able to do before.
Her appointment went very well. It was a long day at the hospital because Katlyn had to have her treatment of IVIG and her RSV shots. I know she didn't like the fact that she couldn't run free and that right after that she was stuck in the car. Her doctor seemed plaesed with Katlyn. We had nothing to report. He said Katlyn can now start eating some more fresh produce like apples, oranges, melon and cucumber to name a few. I'm so excited about this, and Katlyn seems really excited too. She was thrilled when I handed her a clementine yesterday.
Other than that all I have to report is that Katlyn's lympocytes were 100 and neautrophils were 700. So we will be visiting the US in a couple of weeks. Katlyn's appointment at the NIH falls on her birthday Feb. 5.

2007-12-30T16:19:00.000-04:00

I would like to start off by wishing everyone a happy holiday. I know it has taken me so long to give everyone an update on Katlyn and how things have been going for us. It's really difficult for me to put it all in words exactly. We are just so overwhelmingly happy to have Katlyn finally home. Christmas was a huge sucess and I think Katlyn is definatly a fan of recieving so many presents at the same time. She seemed very pleased with every single thing that she recieved, and extremely interested in what her siste Haley got. Maybe even more so than her own. Katlyn woke up Christams morning and strolled into the living room and almost acted as if having a bllion presents in the room was normal. She knew exactly what to do. She opened one present at a time, and admired each one (well except for the clothes). This Christmas was so special for us. Last year was spent in the hospital and although we did our best to make the most out of the situation, it was still a hard time. Well everyday has been for a very long time. Being home is a lot of work, but we are so happy to do it. It is so nice to be able to cook in our kitchen again, and eat at the table like a family should.
On Christmas my mother and Katlyn's sister Haley were here to spend the very special day with us. It was so nice to be surrounded by people we love and have as close to a normal Christmas as possible. It was extrememly chaotic at times, but it was a exciting chaos. I always seem to get nervous whenever we're handling meat of any kind in the kitchen. We have to take extra care to not contaminate anything and end up getting Katlyn sick.
I think we are finally starting to settle in now. It is a lot to get used to, but we are finding routine and what works best. We have decided that the easiest way to do this is to keep everything from top to bottom disinfected--including our groceries. That way we're not wodering what's dirty and what's clean all of the time.
Katlyn seems extremly settled. She is developing very well. Just the other day she counted how many smiley fries were on her plate in Spanish--there were five. Johnathan and I just looked at eachother with a bit of confusion and amazement at the same time. This little girl is so smart. We have taken her outside as well as for drives in the car and she absolutely loves it. She is learing what the traffic lights mean--yelling "go daddy go."
Really Katlyn never seems to stop. She is a barrel of monkeys all day long. If she's not pretending to be on a big mountan of laundry (clean, lol) than she's sticking things in the dvd/vcr, grrrrrrrr. She runs around here all day long, until it's time for bed and then she crashes. She enjoys sleeping in her new toddler bed, but sometimes we hear her little footsteps sneaking in the night to come and find her mommy and daddy. Honestly, we feel absolutley blessed. We are home and it is so amazing. It's so nice to be able to experience all the things that we have missed out on until now. Katlyn is doing so well and we couldn't be happier.
We do still have a long road ahead of us, but I think the hardest part is now behind us. Right now we are recovering from the crazy rollar coaster ride we have been on, in all areas. I cannot believe how much cleaning supplies we are going through. It's nuts.
We have taken Katlyn to the local hospital twice since we have been home for a routine blood draw, and they have been great. Because of the tests ordered, Katlyn gets accessed by her port, but it's been a breeze. She does freak out whenever we go there, but she's happy in the end when the nurses hand her a couple of stickers. They have decided to now see Katlyn in the oncology clinic, to reduce Katlyn's exposure. We still haven't heard back how Katlyn's latest tests were, but the blood was only drawn yesterday and I imagine her doctor should call anytime.
So we will be going to the local hosital every Monday for blood work and visiting the IWK in Halifax every 3 to 4 weeks for IVIG, and go to the NIH in Maryland every two months.
We are happy though.
Thanks to everyone who has helped us so far though all of this. All of you make this time a little easier for us.

2007-12-26T21:50:00.000-04:00

All I can say is Happy Holidays!!!!! We are home and loving it.
I will give a very in depth update just as soon as I can find the time. This girl keeps us very busy!!!! Everything is still going great. Katlyn is doing fantastic and she loves being home. It's so normal it makes me teary.

2007-12-10T10:48:00.000-04:00

I know, I know. It's been such a long time since I have updated Katlyn's blog. It's just so hard to find a time that I can get access to the Internet, without leaving Katlyn by herself. With that said, there is so much to update about Katlyn.
We had her first followup appointment at the NIH and it was really crazy trying to get her on a commercial air flight. We were lucky when leaving the Halifax International airport. We found them to be extremely helpful in accommodating Katlyn. The moved our seats on the plane to the row right behind first class, so that people would not be passing by us frequently to use the washroom and such. As soon as the plane took off, Katlyn was out. She slept most of the trip, only awake for the last 20 minutes or so. I just slipped her Elmo DVD in the DVD player that child life, at the IWK, so graciously let us borrow. Everything was great until we arrived at the airport in the US. The Dulles airport is enormous. We had no idea where we were going. We had to leave the terminal we were at and take a shuttle with about 40 people other people. We were so nervous. We then took a taxi to NIH because we were too scared to bring Katlyn on another shuttle. I know she had just come off a commercial flight, but we really do not want to expose her to any more people than we have to. The visit to NIH was really quick. All they needed to do was draw her research blood and chat with us for a few minutes and then we were free to go. The trip back was not as easy. At first they were trying to make us pay extra for the type of seats we had on our way there. We didn't care though. We need to take every possible precaution that we can to keep our little girl safe. In the end they did not make us pay any extra because we really emphasized how important it was. Katlyn did not sleep on the way back at all. Besides that, the people ahead of us were really sick, coughing all the way. So, we decided to keep Katlyn under her plastic shield. I was so nervous, I ever wore a mask.
So we are still at the IWK, but not for long. It turns out that we will be moving back to Centreville. The reason why we couldn't at first was because of the well water. It turns out that we are going to boil Katlyn's drinking water, making it even safer than bottled water, and we are going to add a very small amount of bleach to her bath water 15 minutes before she gets in. This will chlorofy her bath water, just like you would be a swimming pool or a chlorification system--minus the $7,000 cost.
So as we speak Johnathan is home completing renovations. He has ripped the carpets up and is in the process of laying laminate flooring down. I will be going home for the very first time since Katlyn was first admitted 15 months ago. I really need to clean everything up and get thing finalized for Katlyn's time home. I will be leaving tomorrow and not returning until Friday. My mother will be coming and spending the week with Katlyn, God bless her.
It's also a possibility that Johnathan may get his old job back building fire trucks. It turns out that one of the guys he used to work with, will be retiring after Christmas. So we have our finger crossed!!!!!
Other than that, on Friday Katlyn's lines started to leak so we had to take it out. She had already been scheduled to have it removed today and a port-a-cath in it's place. So this afternoon Katlyn will be going to get her port put in, as well as a skin biopsy of some marks that she has on her body. We don't think these marks are anything to worry about, kind of similar to a birthmark, but we want to know as much about Katlyn as possible.
Katlyn's numbers have been really great. Before the gene therapy, Katlyn's neutrophils had never been higher than 800 on their own. She is now in the range of 900-1200. Her lymphocytes are still low, with about 150-200. However, the IWK did a marker test, and Katlyn is producing the different variants of cells that she should. The doctors we very pleased. We are still waiting to hear back about her research blood, which we should at any time.
So things are looking great. Katlyn will be home before Christmas and we couldn't be happier. The light is getting brighter each day. We are so excited to bring our little girl home for the first time in 15 months. She still has a long way to go, and this journey is far from over, but I think we are getting closer. Katlyn is going to be okay. She's a little trooper.

Just hanging out at the IWK

2007-11-19T21:48:00.000-04:00

Katlyn is doing very well. I was hoping that I would have some parade pictures to put on here, but unfortunately I have not become familiar enough with our camera in order to take pictures that actually show up properly. I have a few, but they are actually too embarrassing to put on here. With a journalism and photography background, you would think that would have been able to figure it out. The lighting was difficult because we were on the top floor of the parkade looking down on the parade. Katlyn had a blast. She enjoyed all the lights and music and sometimes she even got to see a passing dog or little children running around down below.
It was a pretty chilly night, but Katlyn was really bundled up nicely. She was so hyper from the parade, that she didn't even want to go to be. She just kept signing jingle bells.
Nothing is really new as far as Katlyn goes clinically. We will be going back to the United States next Monday for Katlyn's first follow up appointment. We are pretty nervous because she will be flying commercial, but I'm sure she's going to be fine. She'll probably just watch Elmo the whole time.
Other than that we are working our hardest to fine a safe place for Katlyn to live before Christmas. Really, it is our ultimate goal. Katlyn is doing fantastic and she is able to leave, so now we just need to get out of here. She had to spend her first Christmas in the hospital and we are trying our absolute hardest for her second to be at home.
We also learned that Katlyn will be able to play with Cole, another child with SCID who had a transplant in April. Their doctor said that we'll take a look at her bloodwork when we get back from the US, and everything is good then we can go on a pass to visit him. We know his parents, Jenn and Mark very well, and know how clean their environment is. We also know we are going to have a blast. It's so exciting to think that Katlyn and Cole are going to finally meet. We have been all going through this together, with both of our children sick. It's so neat how they will meet very soon and will both be each others first little person to play with. We are also planning on visiting them when Katlyn has her followup appointments at the IWK.
As you'll see in the pictures, Katlyn has taken a liking to playing in the lockers amongst a million other things. She now climbs everything and anything, just like a little monkey. In other words, Katlyn is able to be your typical two-year-old--with the attitude and everything, despite all the isolation in her life.
Katlyn is our little angel and she is such a little trooper to go through all of this. She always has a smile on her face. She is so awesome.

2007-11-16T22:21:00.000-04:00

I know that it has been awhile since I have updated Katlyn's blog but well a lot just hasn't been happening. I was hoping that when I updated Katlyn's blog I would be able to come here and let everyone know that we were finally going to be getting Katlyn out of the hospital. Unfortunately that is not the case yet.
We are still in the hospital because right now this is the safest place for Katlyn. Ideally we would like to live in with my mother for some extra help in all areas. Basically we need to start over from scratch. The problem is my mother's home is not safe for Katlyn. Her home is equipped with a forced air oil furnace, which means that all kinds of bad stuff would get blown through the rooms and possibly make Katlyn sick. It looks like we will need to have baseboard electric heating installed, the carpets removed and some kind of HEPA filtration in place before we move in. We have no idea what a project like this would cost, but frankly we don't have much at all. We have been going at this for a very long time and it has been incredibly financially straining and neither of us are working. Fifteen months is a long time, and we would like to keep adding to the time we have to spend here.
I wish we would be home for Christmas. Katlyn had to spend her first Christmas here and it was very hard. I would love for Katlyn to be able to wake up in her own home and be super surprised and have a nice turkey dinner.
Katlyn is doing great. Today her neutrophil count was up to 1100 and her lymphocytes were 100. That is the highest her neutrophils have ever been without assistance. We are very excited to see Katlyn making progress. This weekend we will be taking Katlyn outside, weather permitting. Tomorrow night there will be the parade of lights in Halifax and they just so happen to past right in front of the IWK, so we hope to take Katlyn to see it. She won't be able to stand on the side of the road with everyone else, because there are just too many people, but we are hoping that we can get a good view inside the parkade and no one will be around us.
I think Katlyn will absolutely love it. I will make sure to post some pictures of this weekend as soon as I get a chance.

Katlyn's first time outside in N.S.

2007-11-05T19:55:00.001-04:00

It is so nice to be back in Canada. I knew I really missed being close to home, but now I know just how much I did miss it. Right now the IWK is the closest thing that we know to home and it is so nice to come back here to everyone waiting for us. It was nice to be able to see our families too. The visit with all the Grammies, Grampie and Haley was great. We missed everyone so much. It was very interesting to watch Katlyn's reaction to Haley. She was really fascinated by her.
While we were at the NIH, Katlyn was allowed to go outside, so long as all her numbers were at safe levels. We were very unsure how that would work once we came back to the IWK. This is a completely different environment, and frankly I couldn't even understand how we would safely get er from her room to the outside. After careful consideration we decided that it could actually be done safely by putting Katlyn's plastic shield over her and heading the least travelled and practically vacant part of the hospital. It wasn't so much the outdoors that scares us. It was getting Katlyn from her room on the 7th floor, all the way down on an elevator , and through the halls and out the building.
We discussed our ideas with Katlyn's doctor and he felt comfortable enough allowing her to go outside. We are so happy. Thank you so much Dr. Issekutz. Katlyn is so happy when she is outdoors. She gets these huge bursts of energy and I find that she glows after one of our adventures. I'm glad that her doctor here felt that because Katlyn had been going outside at NIH, that she could do the same here.
We had an awesome day yesterday. We went out to the play garden and Katlyn absolutely loved it. At first she was a little slow getting started, maybe because she hasn't been outside for so long. However, once we started to play soccer, she was off. She played on the swing, went up the stairs to the jungle gym by herself (with supervision of course) and down the slide by herself. After playing in the playground for awhile, we decided to take a walk to the waterfront to see some oats. Sure enough there were a couple out there as well as some ducks. Katlyn really enjoyed herself. I find that every time I'm that close to the ocean, I get a very overwhelming relaxing feeling. Apparently Katlyn did too, because she fell asleep on the way back. It was fantastic.
Katlyn is doing very well clinically too. Really we don't have any concerns. Like usual her numbers are slow climbing up, but they are going up. She hasn't needed GCSF for about a month now. Her neautrophils as of today were 740. Unfortunately her lymphocytes were only 70 today, so we will not be able to go outside until she is over 100. I'm going to talk to her doctor to see when we can repeat the test, hopefully Thursday or Friday. He has only been checking her on Mondays since we have been here. Also, Katlyn will have an infusion of IVIG tomorrow as well as an ultrasound of her thymus gland. They want to see if it has got any bigger since the gene therapy. The thymus glad is where t-cells are produced.
Katlyn's research numbers were great also. Her ADA activity is 20, her toxic metabolites are down to 4 and her t-cell function was 10,000.

Happy Halloween

2007-11-05T19:39:00.000-04:00

Katlyn, you have grown so much!!!!!

Katlyn last year on Halloween.
What a sweety!!!!

Thanks to the NIH and Children's Inn

2007-10-31T21:46:00.000-04:00

I would like to thank the NIH for the most obvious thing first of all. Thank you so much for accepting our little girl into the protocol and giving her a fighting chance at life. I think that everyone has agreed that the gene therapy is working. It may be slow coming, but Katlyn's immune system is getting stronger and stronger everyday. I really hope that Katlyn's doctors at the NIH realize what they have done for her. With a bone marrow transplant, the outcome was questionable and very scary. You have saved our little girl's life. Each of you have a part in that, and we thank you from the deepest depths of our heart. We look foward to working with you over the following years to watch Katlyn's progress.
I'm so glad that Katlyn was able to benifit from her treatment, but also be able to help children that come after her with this diagnosis. Participating in a research study is very difficult because you have a lot of unanswered questions, but Katlyn's doctors did their absolute best in trying to provide us with as much information as possible.
We also thank you for trying to work with us to make our stay as comfortable as possible. We understand that our practices were not what you were used to, but I think that you tried your best to help put our minds at ease. Some of the nurses that worked with Katlyn are some of the most fantastic people we have ever met, and we are going to miss seeing you and will look foward to seeing you when we come back for Katlyn's checkups.
I don't really think I could ever let the Children's Inn know how thankful we are to them either. You gave us a support network and leaning post when we needed it most. You really took care of us in so many different ways. We loved all your hugs and kind words over the six months we spent there. You were there for us when things got stressful and always did everything you could to take the stress off our shoudlers as much as possible. I think everything you do is amazing and everyone who has a part in making the Children's Inn what it is, is so special.
Thank you to everyone at NIH and the Children's Inn who had a part in Katlyn's treatment and helping to make our stay as comfortable as possible.
Some of you really touched our hearts and we will never forget you.
Thanks

2007-10-26T10:44:00.000-04:00

I am happy to update Katlyn's blog with the news that we are back in Canada. YEAH!!!!Katlyn is at the IWK Children's Hospital in Halifax, N.S., for an unknown amount of time. We know one thing for sure. We still have to get things ready for her. Katlyn needs a safe place to live first. So right now we are looking at my mother's home to decide if that would be safe enough. If it isn't we have to find an apartment in Moncton, along with new jobs and the whole deal.
Katlyn is doing great though. She seems to have transitioned very well. When we came back here, it almost felt as though we never left. They were definitely waiting for us with open arms. We will be returning to the NIH on Nov. 26, for Katlyn's research blood.
Today is a very exciting day because John's mother, father, two grammies and super special daughter Haley, will be coming to visit. We have missed them so much. It will be very interesting to see how Katlyn and Haley interact with each other. I think it's going to be a blast. My mother will be coming to visit on Sunday, and I can't wait. We have missed everyone so much. It will be so refreshing to have people we love surrounding us.
Katlyn's neautrophil count as of Wednesday was 740, so it's looking like she may be ready to leave the GCSF behind (knock on wood). It has now been over two weeks since she has received her last injection. We are still waiting to hear about some of the research blood that they drew before we left. I'm thinking we should get some of the results at anytime now. Katlyn is on a double isolation right now, the first being her condition and the second because she came from another hospital. They have tested Katlyn to see if she has the antibiotic resistant super bugs. It's their policy to do this will all patients coming from another hospital. It shouldn't be much longer and she will lose that isolation.
Her doctor here has been fantastic in allowing Katlyn to still continue with her very open diet. She is allowed to get meal trays from the kitchen here. He even OK'd her stuffed animal, which she was very pleased with.
It's so great to be back. I LOVE CANADA!!!!!!!!!!! It's very nice to look at the big picture too, and see that that chapter of Katlyn's life is behind us now. That light at the end of the tunnel just keeps getting brighter and brighter. Someday soon we will be able to take Katlyn out of the hospital and that day is get closer.

2007-10-19T14:56:00.000-04:00

2007-10-19T14:13:00.000-04:00

So Katlyn is doing very well and just to let you all know her burn has cleared up very well. In one spot on her face, it must have been where the burn was the worse, the skin dried out and we were a little scared that it might start peeling off and scabbing. So we stopped using the burn cream and started to apply some special cream that we got from Canada (Eucerin Glycerin- not anywhere in this Country). So the rest of the dry skin eventually came off and it looks fantastic. She has one tiny little red spot, which I think is going to fade out. Luckily she never got it her eyes, developed an infection or is going to have any scarring.
She is doing FANTASTIC, her new word by the way. Katlyn's last t-cell function came back at 28,000 and her research blood is going to be drawn a bit early, on Monday Oct. 22. So that means that we will be returning to Canada on Tuesday. We are not waiting on any test results, so it should be a go ahead. We are extremely excited. The last week has been really wonderful for us because Katlyn has been staying at the Children's Inn every night and only coming back here every second day. We can tell she really loves it too. She actually get pretty upset when her she rolls up in her little red car in front of her hospital room door. She has seen what it is like to be in a warmer, more homey setting.
Her speech is coming along very nicely. I actually don't think there is anything she won't say. New words are coming out all the time. We are actually going to get her hearing tested as soon as we get back to Canada, because we have our suspicions that it may be a little better than her last hearing test (which was done a long time ago now). It will nice to check it anyway.
So we are looking forward to going back to the IWK. Although Katlyn will still be hospitalized, we are very excited to be closer to home. As soon as we get home we are going to plan a visit with Katlyn's sister Haley, all her Grammies and Grampy. We are so excited. We will not have to be back until Nov. 26, and then after that Katlyn's appointments will change to every two months. I'm going to post a bunch of pictures of our girl because I know I have been slacking in that area. We have just been so busy having our little girl at the Children's Inn, and having a great time

2007-10-14T12:07:00.000-04:00

It was a pretty tough weekend for our little sweety. On Friday we were at the clinical centre and all set to come over to the Children's Inn with Katlyn. We had Saturday completely off, which meant that for the first time in over a year, Katlyn would not have to go to the hospital all day. So we though. Katlyn was at the door anxiously waiting to get out with a couple of her toys in her hands, including her giggly wiggly and a Halloween flashlight that we had recently found for her. Anyway I had to put a mask on her so I took the toys our of her hands and she forgot all about them, so they were left behind. When we got to the Children's Inn we took of the mask to find that Katlyn's cheeks we red. It was windy outside, so we thought it could be possibly that.
She was fussy, but also very tired and went for a nap. When she woke up, she had these very defined red marks on her face. Upon taking a closer it look, it looked like a chemical burn to me. I lightly wiped at it with some baby soap and water, and she freaked out. We rushed Katlyn back up to the Clinical Centre to get it looked at. The doctor came in and we were all scratching our heads trying to figure out what could have made such a mess of her face. Katlyn was fussing so I grabbed her giggly wiggly toy, which was covered in an oily substance. I then quickly grabbed the flashlight, which was completely covered in it. We opened it up to find the inside was also covered. The batteries had leaked, resulting in a chemical burn on Katlyn's face.
Friday night was a very long night. Katlyn was very uncomfortable and I felt as though I only got minutes of sleep. I had to apply some ointment to her face all through the night to prevent infection and to soothe the burn. Also we had to give Katlyn some benadril because it looked as though her body was having a reaction to the chemical. The Yesterday the burn looked a bit better and hadn't blistered. We have to be very careful with it so that it does not get infected and it scares us.
Now we're Sunday and again the burn looks a bit better. Hopefully it heals up without any infection and no scarring.
She's been a trooper though. Even though it hurts for us to wipe at it and apply the lotion, we are still able to, even though she gets upset. I can only imagine how much it hurts. So we can't take her outside right now because the sun on the burn could make it worse. She is now back at the Children's Inn with us, but Poison Control and the doctors check on her regularly.
What a scare. This toy was made in China and put on the shelf by the store where I purchased it. I am now working on getting them to rectify the situation. I hope to get the toys pulled from the shelf for starts. I need answers and I'm going to their corporate offices for some. If I don't feel as though they have made their best effort to rectify the situation I will be seeking some legal advice and possibly going to the media. That should not have been on the shelves for starters, and who knows how many parents have bought that same flashlight for their child.

No Nap for Katlyn

2007-10-11T21:29:00.000-04:00

Today I was putting Katlyn for a much needed nap when I noticed one of Katlyn's doctors and a nurse at her window looking in. They stood there for a sec and then barged in. It was obvious that I was putting my little angel for a nap, but it was obvious they didn't care. Why they didn't care? They were coming to give us some fantastic news. Katlyn's t-cell function test results came back today and was an all time high of 28,000. YEAH!!!! The doctor told us that we could go back to Canada, we could stay at the Children's Inn, whatever we wanted. So here we are tonight with our little sweetie at the Children's Inn. We are in our glory and Katlyn, although very sleepy, is too.
So now we are faced with a decison of wheather we should stay here until the end of the month when her research blood is drawn, or go back to Canada for two and half weeks and come back. The thing is the government will be sending a special private aircraft to pick Katlyn up, and we don't want to put her in danger by sticking her on a commercial flight so soon afterwards. So we are checking to see if it is possible for the next research blood to be drawn in Canada, as a one time exception. I'm sure we will be able to id that is even an option, but there are rules and we need to find out if this is one of them.
Regardless, right now we are very happy. We have our little girl at the Children's Inn with us, and it feels really great. She had spent two nights here but the doctors felt it was in Katlyn's best interests to stay in the postive pressure room at the hospital because of her numbers. However after the results came back today they felt comfortable allowing her to come here. While Katlyn is here we don't allow her to go in any of the common areas. She is only in our room, which we have thourghouly cleaned from top to bottom. Besides that she goes outside and she will now make daily visits to the clinical centre, across the street.
It's hard to say right now when we will be coming back to Canada. Based on her numbers, she is ready to go now. However, we just want to make sure that first and foremost we put Katlyn's interests first.
She is doing great though. We still do have a long road ahead of us, but Katlyn is getting better and that's the most important thing. When we get back to Canada, Katlyn will be back at the IWK until she her ready clinically and we have a place safe enough for her to live. We have so much work to do, but we will get there.

Happy Thanksgiving

2007-10-08T21:18:00.000-04:00

This weekend has been incredible. Yesterday was the Talladega Nascar race so Johnathan and I got the huge idea that we would clean our room at the Children's Inn from top to bottom and bring Katlyn over. She had a blast. It was so amazing. It was really nice to feel normal for the day. We had no worries really, it was actually pretty easy. As soon as Katlyn came in the room she pulled her socks off and took off, running back and forth. It was funny. She seems to like it here. I also cooked Katlyn's supper for the first time ever. I made chicken, potaoes and vegatbles. I was so nervous. I really think I washed my handss like 50 times. I knew her chicken was done cooking at a certain point, but I still cooked it for a little longer, just to make sure.
It was so nice for us to all be eating supper at the same time. It was so special. When it came time to bring Katlyn back to the hospital we didn't want to very badly. It felt so strange. It almost felt as though we had done something wrong and were only able to visitation with Katlyn. It was not a pleasant feeling.
This morning I discussed the idea of Katlyn spending the night with us at the Children's Inn, and the doctor was in favour of the idea. She said she felt very comfortable with us taking Katlyn and she knew that we were careful enough that she would be safe. So we were allowed to bring Katlyn to the Children's Inn again today.
We didn't have a nice turkey dinner and yes we are still not home, but today was so great. I don't know how I could come close to describing it. Basically we feel a little normal. We feel as though we had some privacy for once and weren't under a microscope all day. It was so nice to have our little girl running around playing and getting into everything. What joy!!!!!!!!
Now she's asleep and we are going to join her shortly. It's so nice to be able to sleep in the room all three of us together for once. A little bit of normalcy goes a long way. We will have to take her back early in the morning to meet with the doctors. We don't know if this will be a regular thing, or just a one shot deal. It's so great though and we know that someday soon, things will be normal. Katlyn is doing very well right now and she is going to get a little better everyday.
Happy Thanksgiving to Everyone.

2007-10-06T01:32:00.000-04:00

I know probably a lot of you have been waiting for on an update about if we're back in Canada or not. And for those of you who know we're not, you're waiting to hear why. It's actually rather complicated, but here goes. Katlyn's t-cell proliferation test came back and was 8,000, and she needed to be 10,000 in order to be discharged. We were extremely upset about the decision about not going home. You see, on one hand we have been told that there is a lot of probability of error with such test and they don't even necessarily know what this test means because it's not a commonly done test. On the other hand we have been told that we are unable to leave three times because of this test alone. Because Katlyn's t-cell function was so close to 10,000, we felt it wasn't enough to keep her here. Actually a lot of people were in agreement. Katlyn will not be literally going home. She will still be in isolation at the IWK in Halifax, N.S..
Now here's where it gets tricky. Because the doctors taking care of Katlyn are the ones who set up the protocol and all the guidelines for discharge, officially they have to stand by that. It does make sense. Where would they draw the line. What if the next child was say 7,000. They set those numbers up for a reason and they should stand by them. So we are still at the National Institute of Health. For how long? Who really knows. We know that they would like to keep Katlyn here to monitor her progress for as long as they can. We know that we are going to base our decisions about when we leave on Katlyn and what's best for her. If being here is the safest thing, then we'll have to stay here. Ultimately we would like to get Katlyn out of the hospital altogether. A hospital is not the best environment for an immune compromised child. At this time however, we don't have a safe place set up. Our hands are kind of tied right now. We are looking at the possibility of living with my mother, but we are still unsure if that's the best plan. We need to look at the cost of preparing the house, and if it's at all doable first of all, and if the fund raised dollars are going to be able to cover it. If it's a large costs it's doubtful that they will because there just isn't that much. We have been going at this for over a year now and to tell the truth, it has been a huge financial stress for us. Other than that we might have look at finding an apartment that will be safe enough for Katlyn to live. We have to make the smartest move for Katlyn. We have come to far to make any silly decisions. Besides that we will need to look for a new source of income. We have so much to do before Katlyn will be able to officially go home.
At this time I would like to thank my friend Sandy who is busy right now trying to organize a fundraising even for Katlyn. She seems really busy at it and I'm sure it's going to turn out to be a huge success. She's planning on having a raffle. Also a big thanks goes out to Duane from Duane's furniture in Woodstock, N.B., for donating a very nice wooden rocking chair for the event.
Katlyn is doing very well as usual. She is loving the time she gets exploring the outdoor. Today was a hot day so we waited until this evening before going out and it was great fun. Katlyn ran around with her little flashlights. I think this outing gave Katyln a new perspective on things a bit. Also when we came back I was undressing Katlyn from her dirty clothes and getting her ready for a bath. I asked her if she had fun and she immediately gripped on to me tightly, giving me one of the biggest hugs ever. She just kept saying "thank you, thank you." Then when Johnathan came in she blew some kisses his way again saying "thank you, thank you." It was so cute!!!
So tomorrow is a big day for us because we are going to begin potty training Katlyn. It seems like she's ready and we are able to devote our time 100% right now, so it's seems perfect. Hopefully she won't give us too hard a time. It's hard to say, but I think that a little girl who knows how to call 911 several times and program the hospital bed so that if get out of it the alarm will go off, is definitely smart enough. We love you Katlyn.

2007-10-03T13:46:00.000-04:00

Here's a link of my interview with CBC information this morning in Moncton. Enjoy!
http://www.cbc.ca/informationmorningmoncton/media/kaytlynOct03.ram

Day 131 Post Transplant

2007-10-01T22:11:00.000-04:00

Today was a pretty wonderful day. Katlyn's neautrophils went up a bit on their own and her lympocytes also increased a bit. She was able to go outside, so of course that is where we spent most of our day. It was an adventure. Katlyn was the most excited I have ever seen her when I told her she could go outside. It seems as though every time we go outdoors, she gets more and more comfortable out there. Today she was all over the place exploring. She was hammering things with her sticks and now has a new found love for rocks. She played and played with rocks forever. She counted them, then counted them again. She scraped them along the walkway, so that she was drawing a little picture. She had so much fun. I think we spent about 5 hours out there today.
Tomorrow is IVIG day and that means it is going to not only prevent Katlyn from going outside, but also keep her very close to her IV pole, restricting her mobility and freedom.
So Wednesday we'll find out what Katlyn's t-cell function is and then we'll go from there. She is doing great though. I really think the gene therapy is working. Someday soon Katlyn is going to be able to lead a normal life.
I would also like to thank everyone that comes on here and reads Katlyn's blog and keeps us in their prayers. Having a sick child is a very stressful and heartbreaking situation to be in. Some days I find I have lows, whereas other days I have this happy buzz. It really is a rollar coaster we are riding on. But thank you to everyone who does continue to supprt us through this very difficult time. We really do need all of the help and support we can get, and we do appreciate every bit of it.
Thank you all.

2007-09-30T17:44:00.000-04:00

Katlyn has not been able to go outside this weekend. We were hoping that she would because the weekends are the best time to take her outside. This place is totally deserted and not a whole lot is going on. However Katlyn's neautrophils have remained above 500, so she hasn't needed any GCSF. However her lympocytes are just below 100, and that is what has prevented her from leaving her room. It just breaks my heart. She enjoys herself so much outdoors. Katlyn enjoys having a little freedom and exploring so many new things. In this room though, she seems a little down because everytime she talks about going outside we tell her she can't.
It's so hard. I know that the situation could be a million times worse, but something so simple as going outside. I mean, really? I just want Katlyn to be able to live a normal life so badly. Oh I dream of the day.
Actually I think I'm a little bummed out today. There is a possibility that we could go back to Canada, but we don't even dare let ourselves get even a tiny bit excited. We're so scared if we do, we're just setting ourselves up to be disappointed. It is so fustrating.
Besides that I have this horrible feeling like we're all alone. It almost feels as though people have gotten used to the idea of Katlyn being hospitalized. When Katlyn was first diagnosed, we did have an overwhelming feeling of support from every direction. So many people were helping us. Now though, things are different. I often wonder if maybe people have almost forgotten. Katlyn is still a sick little girl. We have been going at this for more than a year, and God only knows how much longer. It seems like forever. The need for help and support is greater now than it has ever been, but I have this feeling of helplessness. I'm not really sure what to do.
I can remember when my best friend Aleisha was killed in a car accident and how badly that hurt. We knew eachother since high school and were extremly close. We ended up employed at the same place. Anyway when Aleisha passed away and I returned to work, her desk was full of cards and flowers and her computer was turned around. Noone bothered even trying to sit there for the longest time. But I can remember the day that someone did. I can remember holding my breath, and as they sat down, wanting to scream at them, and then I just wanted to cry and never stop. The feeling that I have is very similar to that. It feels as though people have moved on with their busy lives and have adjusted to us not being around. They've moved on in some sense.
It's hard to think ahead, about what we are going to do and what's going to happen. Johnathan has lost his job so he will have to find a new one when we get back. I might even need to work as well. We'll have to find a new place to live, move all of our belonings from Centreville to Moncton, which is about 5 hours a way, and the list oges on. It just all seems very overwhelming.
Sometimes it seems as though we are living with a black cloud over our heads. It will be very nice when things start taking a turn in the right direction. It's just right now there's so much uncertainty in all aspects of our lives.
I just love my girl and want everything to be okay.

Choo Choo

2007-09-25T21:24:00.000-04:00

Here we are painting a train for Katlyn
Ta Da!! Katlyn in her new train.
She seems really pleased with it.
And so busy!!!
My sweet Angel

Today was a great day. Katlyn was not able to go outside today because her lympocyte count dropped a little, but on the plus side her neutrophils were up. They think it may have been a posibility a mistake was made because of the increase and decrease of cells. Usually when this happens, it may be sign that her body could be trying to fight something. There are no signs of any sort of infection though. Katlyn is doing fantastic. She seems to be getting banged up quite a bit from playing so roughly, but that's about it.
So, because we were unable to take Katlyn outside, we decided to make the best of it and we built a train out of a cardboard box. It was so much fun and Katlyn loves it. She get's in the train, then out of the train and back in again. "Choo, choo,"is all that can be heard from her when she's in her train. It is so cute. It was a fun day though, and we hope her lympocytes and neutrophils are at safe levels, so that we can explore the outdoors tomorrow.

2007-09-25T00:30:00.000-04:00

Well i have to say the last few days have been so amazing for us. Katlyn has been going outside quite often, so that is what we've been looking forward to each day. From the time her little feet hit the floor,Katlyn is practically begging to be brought outside. She'll give a lot of hints, for instance grabbing her sunblock, putting on her sunglasses, and the obvious hints like making a mad dash towards the door and saying "out" or "outside."
Katlyn has always been a very happy child. Although she has been through so much in her short little life, she never seems to be bothered by any of it. Frankly,Katlyn just doesn't seemed fazed about a whole lot in life, except on thing: going outside. Every time her door opens and then closes again, a little squeal comes out of her mouth. She's always ready and willing to go. So each day we wait to see what Katlyn's numbers are at and so long as it's nice, and not too hot, we take her outside immediately. Some days, we have had to wait until after her dinner because the heat would be too much for her. Regardless of what time of the day we go, we all make the best of it and have a fabulous time.
On Sunday I took Katlyn outside for the first time all by myself. She woke up around 7 a.m., was fed and ready for her day and I just thought we might as well go. I questioned the plan a few times because there is so much to do once she comes back inside, and I wondered if I would be able to do it on my own. It was great. We went for a nice long walk, including stopping by our window at the Children's Inn and knocking so that Daddy would get a nice surprise. After that we went to the park and played until I could tell she was tired and hungry. So when we came back inside I quickly washed her hands, took all the stuff away that had been outside with us, ordered her lunch and gave her a bath. Once she was finished her lunch I put her down for a nap, which she didn't seem bother by (she was out like a light). Three hours later,Katlyn was still sleeping and Johnathan and I were outside her room pacing waiting for her to rise, so that we could go back outside. We ended up waking her up in the end. So we spent the afternoon again walking and playing, and when bedtime came Katlyn slept like a little angel.
Today was a hot day. I even found it was a little difficult to stand the heat just from walking form the Children's Inn to the NIH, which are just across the street from each other . So we waited until after her dinner and then brought her to the playground. Today was different than the previous days we have been outside because three small children accompanied us while we were there.Katlyn seemed quite tickled by the children. There were two babies and a two-and-a-half year old girl. They were very quite children, so Katlyn wasn't afraid. She actually took interest to the infants. She wanted to touch them very badly. She kept edging closer and closer, each time snatched by either Johnathan or I. We explained to both mother's about Katlyn and how she couldn't be exposed to any germs, and they were extremely understanding and helpful. Both mothers would hold their baby and I would hold Katlyn, and we allowed our children to get a good look at each other. They all seemed to have a great time. One of the little babies was just learning to walk, so she took an interest in Katlyn and giggled every time Katlyn took a step. It was a little scary, but at the same time, it was nice to see our daughter having some interaction with little people just like her (mind you, from a distance, but still).
So tomorrow Katlyn will have her research blood drawn which will tell us a lot of things about how the gene therapy is progressing. We are going to plan to come home for next week, a test pending. We will find out what Katlyn's t-cell function is next Wednesday and if it is above 10,000 and all of her other numbers are good, we are free to go back to Canada. It will be really nice when we do finally get to go back home, but at the same time, we're trying to prepare ourselves for not going home just yet. This will be the fourth possible chance to go home. We don't want to get our hopes up because we don't want to be hurt so badly like the last time. However, we still have our fingers crossed. Please keep us in your prayers. They have worked very well so far, and we still have a long way to go.

2007-09-21T22:35:00.000-04:00

Katlyn is still doing fantastic. Things have been very exciting lately because we have been taking her outside, her numbers permitting. Yesterday was Daddy's birthday and her numbers were at a safe level, so we were able to spend the majority of the day outside. She seems to be getting more and more comfortable being outside, as well as wanting to go outside from the moment she wakes up in the morning. Every time her door opens she gets pretty upset when it closes before she has a chance to make it out to the playground. Katlyn is like a new little girl. She absolutely loves the outdoors. Today was a warmer day so we weren't able to spend as much time as we would have like, but we still got to go. Today she wanted to bring her baby outside with her and we also brought some bubbles. It was a blast. She was chasing bubbles everywhere.
It will be so nice when Katlyn is able to play with another child. That will be incredible. Luckily she has an older sister, Haley. So as soon as we get home she will be able to play with her.
Katlyn is doing pretty good. Things are still really slow. Her numbers are about the same and she is still getting the GCSF. She no longer has to be hooked up to the IV machine everyday anymore. They switched her med back to oral, so that's really great. Hopefully we'll be able to go home soon. It will be so nice to be back on Canadian soil again.

Happy Birthday Daddy!!!!!!

2007-09-20T00:14:00.000-04:00

We had a great day. I know it would have been better if we were home, but we made the best of it. Katlyn was allowed outside, and she spent about three and a half hours outdoors. What a day. Katlyn and I decorated and surprised Daddy with a special ice cream cake, that way Katlyn could have some too. When the tired out little bear went to bed, Johnathan and I went to see a movie. Luckily she had a great nurse, whom we trust dearly, and we were able to get away together for once. Thanks Gene!!!!
Happy Birthday Daddy!!!!!! We hope you had a great day!!!
Publish Postor:pointer; cursor:hand;" src="http://bp2.blogger.com/_jGxsvt_F444/RvSZqNxU37I/AAAAAAAAAhw/c-ohqwKb4wY/s400/y6.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5112880427502460850" />This is a picture Johnathan shot after I fell off the swing
A pretty bird we spotted

Some Pictures

2007-09-19T00:06:00.000-04:00

Katlyn Painting Happy Birthday Dad on her window, and painting her toenails.
She had a blast.
What a beautiful girl
Chillaxing with her baby
Katlyn being way too daring
Daddy getting a little silly. See what isolation can do to you. Here Johnathan jumped in Katlyn's crib with her. She loved it!

I love the Pictures, I loved today

2007-09-16T23:09:00.000-04:00

Daddy and his girl taking a little stroll in the park
Ahhhhh...Aren't they cute!!!!
A nice family picture

A Day Outside

2007-09-16T22:24:00.000-04:00

So we were allowed to take our little monkey outside again today and the only way that I can even come close to describing how the day was is super fantastic, and even still that doesn't come close. Today we decided to do something a little different when we took Katlyn outside. Last time we took her for a walk in her stroller and I think it was really overwhelming, so this time we decided to take to the the park outside the clinical center. Since I have been here I have not seen one child playing in there and her doctor thought it was a great idea too.
So we brought her outside the back door and I got out the disinfectant wipes to clean the swing off. I scrubbed and scrubbed until I was sure it was clean. So then we put her in the swing and it was so cute. She was laughing and having a great time. Most playgrounds that I have been in are usually grounded in either dirt or mud, but this playground had a very special rubber mat underneath it to cushion the fall. Because it was a mat we were able to allow Katlyn the most freedom she has ever had in her whole life.
When she was all done with the swing I propped her down on the ground. At first she was really unsure about the situation. She stayed very close to her mother and father. Then she took three sideways step in one direction, and then the next. And I swear like a bolt of lightening, Katlyn was gone. I had to run to keep up with her. She ran around that playground, and around and around. At one point she heard a bird chirping and headed in that direction. She could see the little birdie sitting on top of the tree. So the bird stayed there for a few minutes singing us a song, and Katlyn wasn't missing a beat. She say right along with him. And then the bird was off and Katlyn got so excited.
She also got to touch a leaf, and eventually rip it off the tree. And then she found a stick and carried it around with her for the better part of her adventure. She would poke it at this and stick it in that. It was really nice to see our little girl having so much fun exploring.
I took her down the slide and Johnathan and I took her on the see-saw. She was saying up when we'd go up, and down when we'd come down. We had so much fun and not once did Katlyn try to take her mask off at all. She'd touch things, but never brought her hands up to her face. A couple of times she would trip a little and so we'd disinfect her hands and she was back at it.
The last time we took Katlyn outside we noticed that her eyes were very watery when we came back inside. She had sneezed twice and her eyes watered, but when she woke in the morning she was fine. I think it was probably because she just wasn't used to breathing the outside air. This time however, none of that happened. Her eyes didn't water at all.
I know the road that we have been on has been very long and hard, but seeing what I saw today is going to be a daily reward for us someday. I know we will never take advantage of our little girl having that kind of freedom. It will be really nice to one day sit back and watch our little girl run free. I look forward to that day so much. It is going to be awesome. Today was so much fun, for all three of us.

Here I am pushing Katlyn on the swing.
This is where we go a little faster and believe me, she's laughing her butt off.
Katlyn just taking it all in.Katlyn sees a flower out of reach, so she has to weasel her way between the fence and the flower garden to get at it.
What a smart girl. She does make it to the yellow tulip, which I can tell she's pretty satisfied with.
She was fascinated by this spinny thing
Here we are going through the gate of the playground. We go in and out about 50 times.
Here she is discovering a stick, which she carries around the rest of the adventure.
Katlyn loves trees, but when she came close she didn't really want to touch the leaf. Once she did though, she tore it right off.
Katlyn hears a bird chirping and wants to get a closer look.
Mommy and Katlyn going down the slide.

GREAT NEWS FROM US TO U

2007-09-14T20:23:00.001-04:00

Daddy and his upside down girl
In this picture you can see the little necklace I made for Katlyn yesterday. It has a little dog on the front and she loves it.
Here we are counting.
Johnathan took this picture and I just love it.
And here I am giving my girl lots of loving

I'm so happy that today I can write some very great and exciting news about Katlyn. Her t-cell function test came back today and it was 20,000. This is fantastic news. This more or less confirms the last test result was probably an error because it was only 500 and the one before it was 18,000.

wwewcfererrrrrrrrbgv rrrrrrrrrfgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvgvffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffrrrrrrrrrr43r4errgnrrrttttrr3errq cs sxfffff f cfffh

Katlyn really wants to share some news with the world. Probably needs to send a message to herself in the future I imagine. This blog is hers so I just cannot stop her, plus it's cute watching Katlyn imitate her mother.
So that brings all her numbers back where they are supposed to be. We will not be leaving just yet though. Katlyn has research blood on Sept 25, which is not that far away so we'll stay until then Hopefully we can start planning it soon though and hopefully (I have my fingers crossed here), we'll be able to go home soon

Some Great Pictures

2007-09-13T23:47:00.000-04:00

Katlyn doing the balancing act with her applesauce.
"OH NO," are Katlyn's words exactly.
She must have thought the mess was already there, might as well have an applesauce party!!!! Actually, she's been doing this a lot lately.
Little Angel
Katlyn trying to touch the camera with her very dirty little fingers.
What a Peanut

Daddy and his girl

2007-09-13T23:38:00.000-04:00

I snapped these pics tonight and I absolutely love them. They're so cute.

Day 112

2007-09-12T21:51:00.000-04:00

I know that it has been awhile since I have updated Katlyn's blog. To tell the truth things have been a little hard for us since we found out that we wouldn't be coming home. We have been trying to de-scramble our brains and get back on track. I think we are doing a lot better now, but sometimes it can get really tough. It will soon be a year that Katlyn has been in isolation and we are so anxious for her to come out. I think one of the biggest things that we had a hard time was the fact that going home meant that Katlyn's was doing a lot better. In essence by her not going home, it kind of felt like the opposite. That is not true though.
The t-cell function test that stopped us from going home has a lot of probability of error. I think that everyone was kind of surprised by the results to say the least, and I think we are kind of thinking it may have been a mistake. They took the blood for that test last Thursday, so it takes about 10 days to get the results back.
Besides that Katlyn is doing fantastic. The GCSF seems to be working very well. Her first shot lasted up until yesterday which would make it about 12 days I think. She got a new shot yesterday and her neutrophils shot up to 13,000 today, which is great because it show that her bone marrow has that reserve. Her lympocytes also seem to be going up gradually. Before it seemed as though Katlyn barely spent anytime over the 100 mark and in the past week and half she has been over everyday except once. Today she was just under 200 and yesterday even higher.
The doctor told me today that Katlyn's numbers are looking really great. She has the highest ADA activity since she has been here, basically she is half way to normal. Also, her toxic metabolites are staying low as well. So those two numbers show them that the gene therapy is working. It will only be a matter of time before those new cells get stronger and take over and Katlyn is fully restored. The reason why they think everything is taking so long is because they gave her such a small number of cells to begin with. Also they think it's possible that children with ADA may also have problems with neutrophenia, as they have seem with both Katlyn and their previous patient.
The little princess is great. She is now fully transitioned from lactose free formula to regular whole cow's milk, and she is having no problems at all. She is starting to want out of her room more and more, and she seems to be getting braver and braver. Sometimes when the door opens she rushes over so fast she almost escapes. Also, if you have her in your arms and you are in front of the door she will try and open it. It will be really nice when Katlyn doesn't have to be in isolation anymore.
This have been such a long road and we still have so far to go. The thing is, it could have been an even harder road, and I just keep trying to remind myself of that. Katlyn is doing great. She's not sick and the gene therapy is working, and that's exactly what we want.

2007-09-05T16:28:00.000-04:00

I can't even find the words to describe how life is as a yo yo. One minute you're shining, smiling and feel like everything is beginning to go in the right direction, and within two minutes all of that being ruined once again. Katlyn was all set to go back to Canada tomorrow. We were so close this time and so excited to be on Canadian soil again. But with Katlyn's doctor came a very familiar speech that we have already heard twice before now. Her t-cell proliferation has dropped to an extremely low number. Therefore, she is not safe to leave this room. They want her function to be at 10,000 and they got the results back today that Katlyn was 500.
You would think that we would be so used to all of this. The past year of our lives have been nothing but a huge roller coaster ride of emotions. We are only human though and I'm not sure how much more of this we can take. I just want my little girl to get better. There isn't one thing in this world I wouldn't do to make that happen. I want her to be able to be strong enough to live a normal life. I just want it so bad.
The feeling I get inside my stomach and in my heart having Katyn sick are the most unpleasant feelings I have ever felt. A part of me is lost and will remain lost until she is healthy. To be completely honest I'm scared to death. I just don't want anything bad to happen to Katlyn. She has been through so much already in her short life and really I couldn't imagine her having to go through anymore. I know this journey is far from over. I know that. But I want so badly to start seeing some more light through that tunnel. It always seems as though every time we take one step forward we take a couple back.
Right now she's playing with her dad and she really is the smartest, funniest and sweetest little girl in this whole world. She is so tough. She is going to do great.
I pray to God that Johnathan and I can somehow find some more reserve of strength inside us. We need to remain strong for Katlyn. We have to. We have no choice. But to be truthful I feel as though I'm going to lose it.
It is so frustrating not being able to have answers to all of our questions about Katlyn's condition. I know her condition is extremely rare, but it would be nice to know something instead of always guessing. This is all just eating me up inside.
I hate living in this world. Having a sick child and being in the atmosphere with sick children all around you isn't fun. I know that some of you reading this are in this same world, but some of you will never understand. It really is so heartbreaking.
One thing that this whole experience has taught me is to be grateful for what we do have. I have the most amazing girl. She is the toughest most bravest sweetie ever. She never lets anything get her down. She's a fighter through and through, and that is how I know she is going to fight this. You know it's really hard to stay upset about anything with Katlyn in my life. She just always seems to make thing better. I mean........if you could see her.
So the plan is to get another proliferation done to see where Katlyn is with her t-cell function. Hopefully all is well. I pray it is.
She's a tough cookie and she's really going to fight her deficiency. I know it. I can feel it in my heart.

2007-09-04T15:04:00.000-04:00

So as some of you have already probably seen, Katlyn got to go on a little adventure yesterday. We decided to allow her to have a little trip outside yesterday after careful consideration. Katlyn has almost spent a whole year trapped in a hospital room and yesterday she had the opportunity to go outside. We don't know when she may be able to go outside again so we decided to let her break free for an hour. We have no idea if Katlyn will send 1 months or six more months in the hospital and we knew that this wouldn't only do her a world of good, it would do us good too.
All I can say of the whole situation, as Katlyn's mother, is that yesterday was one of the most amazing days of our lives. It was a very nice gift to be able to give her. She has been through so much and still has such a long road ahead of her. It was a really nice little breaking and it was nice to have some normalcy for once.
All wasn't completely normal still. Katlyn had to wear a mask for protection and she wasn't allowed out of her stroller to wander, but it was a nice step in the right direction. Her doctors feel as though Katlyn does have enough protection that she would be able to go outside.
Katlyn wasn't scared at all. She seemed to just go with the flow and the thing she was most fascinated with was the trees. She was already familiar with trees somewhat because she has some just outside her window, so when we got outside it seemed as though it was the thing she noticed the most. She also got to see lots of flowers, including some roses. We were also able to show her some tomatoes, cars and a huge tractor.
I can't even put into words how yesterday was for us. It really was magical. To tell you the truth, it didn't even seem real. To have our little girl outside like a somewhat normal child, seems so insane I still don't know if it actually happened. Oh dear, I'm tearing up now. I just can't wait until Katlyn gets better and is able to live like a normal child as she deserves so much. The past year has been the most difficult time in my entire life and soon we'll be in the clear. She really is going to get through all this. I know it. I can feel it in my heart.
It really fascinates me looking at Katlyn and how little she has been affected by all this isolation. I know some parts of her life has been affected, but she still remains so happy and excels in all other areas. It's remarkable.
So the GCSF is working and it is looking like we will be coming back to Canada on Thursday. We are trying to remain neutral about the whole ordeal, because we don't want to be shattered again. So Katlyn may go back to the IWK on Thursday and if she does than that's fantastic. It will be nice to be back and I'm sure Johnathan is missing Haley very much. We will actually be able to try and get things ready for Katlyn to actually leave the hospital. From here we haven't been able to do anything. But at least there we can start getting my mother's house ready or finding a new apartment, whatever it may be. Besides that Katlyn is doing great. Right now she hiding behind the bed up to no good I'm sure. My little monkey.

Katlyn's First TIme outside in nearly a year

2007-09-03T22:13:00.000-04:00

2007-09-03T22:02:00.000-04:00

More Pics

2007-09-02T22:12:00.000-04:00

More pictures of Katlyn's Canine visit.
Katlyn loves to press her whole face up against the window to see how far down the hall she can see.
Patty Cake. Katlyn does this all by herself now.
A nice family picture with Katlyn's face squished up against a window.
Daddy and his girl.
Katlyn's playing with Mrs. Potatoehead.
Stop bugging mom, can't you see I'm playing.
Okay, you got my attention. Now I want the camera.
Hi. Can I order some pizza.

2007-09-02T21:52:00.000-04:00

Katlyn wearing the box that her plastic bottles come in on her head.
I swear that girl will wear anything on her head except what your suppose to.
This is Katlyn's Elmo balloon that she can't seem to keep a hold of.
I think she does it on purpose.
Once she got a hold of it she barely let the ballon out of her sight. Mind you I tied it around her wrist.

So on Friday night they gave Katlyn a dose of GCSF, this is used to stimulate her bone marrow to produce more cells. So anyway, yesterday morning Katlyn had her blood drawn and we expecting to see her numbers quite high and were surprised when Johnathan can back with a piece of paper in his hand that read neautrophils 464. I cannot even begin to describe how that made us feel. This was a sign that something very dangerous was going on with Katlyn. If the GCSF does not work, than there is a huge change that her bone marrow is not functioning properly. We were both lost. We were trying to find reason and make excuses. There is no other way to describe the situation other than it sucked.
So I wanted to take a look at all of Katlyn's numbers so at about 3 p.m. yesterday I strolled down to the nurses station and asked one of the nurses to print her numbers off. I swear my heart stopped when I looked down and saw that Katlyn's neautrophils were almost 7000. I could not believe it. I ran clear down the hall and barged into Katlyn's room and gave Johnathan and Katlyn the news. We were all jumping around and feeling much better. It was a mistake but apparently the nurse was very busy and wasn't paying much attention and gave us the wrong numbers. It could have been worse though, she could have been right.
So the G should wear off gradually of the next few days so we should see Katlyn's numbers coming down. Hopefully when she stops dropping, she stops at a safer level than she has been. So her doctor came in today and said everything is looking great and we should be a go for Tuesday. If all is the same, he will contact the IWK and let them know that we are ready to come back to Canada. So then we will just wait for the plane to come and get us.
Katlyn is doing great though. She is growing up so much. She produces several new words every day. I really am so fascinated with her. She can pretty much identify almost any animal and can count up to 12. She is a smarty pants. Right now we're in the process of switching Katlyn from lactose free formula to Regular whole milk and there hasn't been any problems. In fact, I'd say things look a lot better. Today we started her with a sippie cup and she learned to drink from a straw.
Honestly, Katlyn catches on to everything very quickly. She is a very smart little girl. I am so proud of you Katlyn, for everything.

Bone Marrow Aspiration Today

2007-08-31T21:06:00.000-04:00

Here's some pictures of our little princess............

Here are some pictures of our little firefighter.....

So Katlyn had her bone marrow aspiration this morning and there were no complications. I don't know why I always get so stressed out when Katlyn is put to sleep. I just don't feel at ease until someone comes in the waiting room and says she's doing okay. No matter how many times we have gone through it, it doesn't get any easier. Each minute takes an eternity.
Anyways, two of the doctors took a look at Katlyn's slide of bone marrow and did see there was an abnormality there, but that it looks like it has improved since Katlyn has come here. That was very uplifting news for us. I couldn't sleep barely at all last night and I know Johnathan didn't sleep at all.
So she received a shot of GCSF tonight and we will follow her counts through the weekend to see how it does. If all is good on Tuesday (Monday's a holiday), than we will be free to go back to Canada. We'll just have to wait on the plane to come and pick us up.
The doctor also let us know that the patient before Katlyn (the first in the protocol) had to get shots of G twice. He's doing really great now and is back home in Argentina.

Update

2007-08-30T23:31:00.000-04:00

Katlyn will be heading to the OR at apprixmatley 10:00 a.m. in the morning for her bone marrow aspiration. She will be put asleep for the procedure. I'm pretty sure that everything is going to go great and we won't get any surprises. As soon as they prepare the slide her doctor will examine it for adnormailites, and if all is clear they will give her the GCSF and we can go back to Canada. Timewise it's all dependant on when they make the slide. They may do it either tomorrow or Tuesday, as Monday is a holiday. And then after that we will just have to wait for the plane to come and get us. Also Katlyn will have some bloodwork in the morning and hopefully all looks well.
Please keep our girl in your prayers. I will update her blog just as soon as I get a chance.
Also, Katlyn is really growing up so fast. It is so amazing. She is in the process of being switched from formula to milk, and is doing great. She had been on lactose free formula, and now is switching to regular whole milk and there has been as bad effect. If anything things look better. Also, Katlyn is pretty much eating entirely all by herself. We are just so proud of her. She is a big girl now.

Day 99

2007-08-30T23:01:00.000-04:00

This is us posing for a picture with our favourite nurse in the whole United States, Gene.

This is Katlyn getting a visit by Toffee, one of the caring canine at the hospital. This is a fantastic program, and Katlyn just loves those dogs. Especially on this peticular day. She had quite a bit more time than usual because a photographer needed some pictures. It was so funny because she always refers to a canine as a "dog," but on this day she way saying "doggy, it's a doggy."

Day 98

2007-08-29T09:51:00.000-04:00

So we got somewhat bad news yesterday. We will not be coming home this week. Yesterday Katlyn's numbers dropped a bit so her doctor examined her blood smear himself and by looking at her blood it still looks the same as it did when she first got her and he examined it. He told us the safe thing to do would be to do a bone marrow aspiration on Katlyn to make sure there isn't any known problems. They believe that something is going on with Katlyn but it's unclear what that is because they haven't got it all figured out yet. So they will do the bone marrow aspiration like they have a few times already and haven't found any problems. The thing is since Katlyn's gene therapy, her bone marrow should be different. So if they don't find any known problem they will be giving her an injection of GCSF, which will stimulate Katlyn's bone marrow to produce a greater number of cells. They hope by doing this they will give Katlyn a boost and as she starts to fall and level out, she'll stop dropping at a higher number. She has received GCSF before and the first couple of times it seemed to work great, but every time they gave it to her it seemed as though she would drop faster and wouldn't settle at a higher number.
They don't expect to see any known abnormalities with her bone marrow but they are trying to keep Katlyn's safety in mind. If there was a problem and they gave her the GCSF, there could be consequences. So that all said and done, if there are no problems and she ends up getting the G, we could be going home next week.
This is very frustrating for us. Throughout Katlyn's diagnosis this keeps happening to us over and over again. It is part of the journey but it is so hard because we just don't know when it's safe to get happy and excited about something. If it don't rain it pours as they say. The great news is Katlyn is still doing fantastic. She had her research blood drawn yesterday as well, so probably by the time we're ready to go we should know what her ada level is.
It's so hard to say why Katlyn is taking so long to climb back up. First of all, I'm not a doctor or a scientist, so I have no idea other than what the doctors tell me, and even they aren't completely sure. She has two doctors and it seems like they both have their own ideas about whats going on with Katlyn. The one with whom I spoke with yesterday is still sticking with his theory all along. He thinks that because Katlyn received such a small number of cells that things are going to take time. They had no choice but to give her the small number of cells because that was all they had collected.
So Katlyn is neutrophenic again, meaning her neutrophil count is below 500. I'm so glad we never took off our isolation gowns, gloves etc. No matter what anyone says, we will not take them off until we know that Katlyn is safe. She is just too close to that 500 mark.
So we're not really sure when it is that we'll be able to go back to Canada. It would be nice so that we can actually start getting things ready for Katlyn to go home so that she can have a great quality of life. It seems harder and harder everyday being stuck in that room. She should be able to go outside like a normal child. It really saddens me that she has been robbed of all that so far in her life. I really would do anything to be able to allow her to live like a normal child and take all the sickness away. It's so frustrating because we are completely powerless. We are doing all that we can do to make Katlyn's quality of life great, but we can only work within these restrictions.
Hopefully some day soon our girl will be able to venture outside and be able to experience all the things she deserves so much. I love Katlyn so much. I'm so proud of her for being such a strong person through all of this. She has been through so much and she just keeps trucking. She really is the bravest person I have ever known. I love you so much Katlyn.

GREAT NEWS!!!!!!!!!!!!

2007-08-21T19:58:00.000-04:00

First of all Katlyn's numbers were great today. Her neautrophils were 546 and her lymphocytes were 114. The doctor came in this afternoon with some very exciting news. he notified us that he was speaking with Katlyn's doctor that had been in Italy and they both agree that it is time for Katlyn to go back to Canada. We are so excited. Katlyn's monthly research is on Thursday as well as her dose of IVIG, but anytime after the dose of IVIG she can go home.
I contacted Dr. Issekutz at the IWK to see if he you could a flight together for Katlyn's trip home. He said it usually take a week to get it arranged but that he too agrees that it's time for her to come home. He has been brought up to date by Katlyn's doctor here of her progress and said he's not sure how long Katlyn will have to stay at the IWK. However, once we get back to Canada we can start working all of those details out.
This is so exciting. Finally. We are definitely going in the right direction and everyday Katlyn is getting stronger and stronger. Someday very soon Katlyn will be able to be home, and we very much look forward to that day. Hopefully maybe she'll be home for her second birthday and be able to have some freedom.
We still have a long road ahead of us, but I think the hardest stuff is already behind us now. We will definitely hit some bumps along the way but everything is going to be alright. Our girl is doing alright and that's all that matters.
So as soon as we get home we have to work out the details of where Katlyn is going to live. We know one things for sure, we are going to try and make everything as safe for her as possible, but it definitely looks like we'll be living in Moncton. The water is one of the biggest benefits of living in the city and we'll be a lot closer to the IWK, and I will also have my mom there for support. I think it will be a great move to help us get back on our feet and make things as safe for Katlyn as possible.

Day 89 post transplant

2007-08-20T23:25:00.000-04:00

Again I need to apologize for not writing as often as I should and would like to. It has been insane since the last time I wrote. I have barely got any sleep and it's all because if a unwanted visitor taking a stroll through our room at the Children's Inn the other night. I was laying there reading my book droning in and out, when something dark on the wall caught my eye. I jumped up like I've never jumped before. There was a huge bug on the door and I was pretty certain it was a cockroach. Not 100% though, as I have never had an encounter with one before. So the first thing I thought was that no one is going to believe me and I'm going to have to go to sleep with this huge bug in this room. So I quickly taped the bug in my room. Trust me when I say I didn't get too close and that's where the zoom came in handy. Trust me when I say that bugger moved fast. So after getting some footage I ran downstairs to get some help. The security guard let the manager on duty know and followed me up to our room where we met the manage. The security guard said it defiantly was a cockroach and he squashed it with my shoe. As soon as he said it was my face went completely red and tears filled my eyes. At that very moment I became even more home sick. I've never heard tell of a cockroach in Canada.
So the suspect he was just by himself and was just passing through. I think he might have came through our neighbors window because they leave it open all the time. So that has been keeping me up at night. I still can't shut off the light or television when it's my turn to go to sleep at the Inn.
So Katlyn is doing extremely well. All of her numbers are up. Her neautrophils were 624 on Thursday which is fantastic and we're hoping they will be up again tomorrow. Also, her lymphocytes were at 98 and they need to be at 100. And finally her T-cell proliferation was 18,000 and it needs to be 10,000. So that was very uplifting news. So One of Katlyn's doctors is currently in Italy on vacation so when he gets back they are going to talk about when it is that Katlyn can go home and then will get in touch with her doctor at the IWK. I really hope it's soon. We have so much to do to get a home ready for Katlyn when she can finally go out in the real world and we really can't do anything from here.
We are going to move to Moncton because there is city water and that will solve that problem. We are hoping we can live with my mother but we need for someone to take a look through her house to see if it's safe and what needs to be done. And I'm guessing a lot of fundraising is still going to be needed. We still have such a long road ahead of us. We are going to get Katlyn through it though, no matter how much work we need to do.

2007-08-13T16:29:00.000-04:00

Sorry that I have been busy lately an unable to write on Katlyn's blog as much as I would like. We seems to just get busier and busier everyday. The great thing is our days do go by really fast and before you know it it's time for us to go to bed. So all of Katlyn's research blood has come back and things are looking very good. We had a meeting with one of Katlyn's doctors, because he will be in Italy over the next couple of weeks, and what we heard was very promising and uplifting news. The showed us all of Katlyn's progress since back when she was still the PEG ADA and all the numbers are very consistent. What they are telling us is that the gene therapy seems as though it's working and they have evidence of it working. However, Katlyn is just going slow so it's really hard to say when she will be to the point that she can actually leave this room and go back to Canada.

Her neautrophils have dropped slightly to 450, but if you look at the history of her neautrophils they should go back up at anytime and even go higher this time. Overall though Katlyn does seem to be going up. Each time she drops she drops at a higher level than before and at her highest points, she keeps getting higher and higher. It's a very slow progress but Katlyn is coming along great. Her t-cell proliferation has gone back up and is 5400. It's very possible that there was an error in the test that indicated that her proliferation was at 600. Also her ada activity remains the same at a good level. Besides that we have got some good news about Katlyn's liver enzymes (ALT and AST) have both returned to normal levels. This great because if they remain at normal levels Katlyn's doctor will be switching her anti fungal med back to an oral med instead of IV. So that would mean that Katlyn wouldn't have to be trapped and hooked up for an hour and half each day. She would be free.

I find as Katlyn is getting older she is becoming much more aware of her surroundings. I think that she understands now that there is a lot more to this world than just this hospital room. When we're looking out the window at the birds she gets this quietness about her and looks back and forth form the window to the outdoors to the hallway. It is just so hard. It really breaks my heart so much. I'm starting to notice she wants out. I don't think we've ever had her wanting it until now. I just want it for her so much. She is really going to love it out there. What a day that will be.

Besides that Katlyn's creative edge is really coming out. She Absolutely love colouring everything from paper to the walls, her toes to her face. She is having a blast. Just the other day she made a little book for Johnathan and colored on every single page and even glued cheerios to one of the pages.

So that's about it for any new news. She is doing great. Things are going slow but everything is moving in the right direction.

2007-08-04T23:16:00.000-04:00

Here is Katlyn having a visit with a therapeutic dog. They have come to visit her twice now and she just loves it.
Our little monkey.
This is Katlyn wearing Mrs. Potato Head's earring as her own. I was in hysterics.

Katlyn is doing very well. Some of her research blood is starting to come back now. So far things are looking good. Her ada activity is still about the same which is great. Her neautrophils were down a bit as of Friday, to 499, and her lymphocytes 83, but we know she's going to go right back up. As most of you would know from following Katlyn's progress, she does bounce back and forth. Each time she goes higher and drops less and less. So overall it's looking great and Katlyn's numbers are going up.

I had a talk with one of Katlyn's doctors about her t-cell proliferation, and he said he has a theory as to why he thinks it went from 7,000 to 600. He said that Katlyn's toxic metabolites had increased just before that blood was taken, so he thinks that maybe those cells were sick and not able to function properly. He said it takes the cells about two weeks to die off, so we may get some good news this week. Katlyn's toxic metabolites are back down and as a result, if her doctor's theory is correct, her t-cell proliferation should be up. Here's hoping.
She is doing fantastic though. On Tuesday the doctors and some of the nurses were trying to convince us to remove the reverse isolation precautions. We thought about it all day long and hard a hard time with that one. We had both come to the same conclusion that we were okay with not gowning ourselves, but didn't really trust anyone else enough to remove the isolation precautions. Basically we were told that it would be really hard to enforce something like that if we weren't practicing it ourselves, so we decided that the gowns will stay. We are just way too uncomfortable with it. One reason being that we feel Katlyn isn't to that safe point yet.
We have had pretty hectic week. Sometimes it seems as though it just never ends. For starters, John found out that he has lost his job. So that was kind of a blow and besides that we have been so busy between the hospital and the Children's Inn doing a lot of work. I'm going to leave it at that because I don't want to discuss it, but I also don't want to forget it.

Day 68

2007-07-30T22:31:00.001-04:00

I know it has been awhile since I have been able to write. We have just been so busy with Katlyn. I don't mean busy clinically. I just mean that an 18-month-old child locked up in one room can keep you pretty busy. She is on the go constantly. She is talking a lot more now too. It's so cute. She'll talk a whole lot of rubbish and then at the end she'll and a few words that we can understand. I love it so much. She'll say....blah blah blah blah blah blah (really fast), turn off the light?" It makes me laugh every time. This week we have been focusing on barnyard animals with Katlyn and the noises they make and she is really taking off with that pretty fast. We have been teaching her them all along, it's just I decided that this week we were really going to focus. So, I found her some animals in one of the playrooms and a animal puzzle, which she really has taken to.

So we did get the results back for Katlyn's T-cell proliferation and it went down quite a bit. It had been around 7,000 and this time it was 600. Of course again this came as a huge punch in the stomach for Johnathan and I but after speaking with Katlyn's doctor about it, I think we feel a little better. He said that this test alone doesn't really change anything with Katlyn doing well. She is still moving along very nicely. Apparently this test is so variable that it could turn out that the next time the get the numbers they could be right up there again. He said that the test is done less frequently and it's really hard to determine what the results of this test means necessary because none of the other center's doing the gene therapy have published results of these tests. They know that the have gone down, but they don't really know any more than that. So they will be doing this test every two weeks. Besides that Katlyn's neautrophils as of Tuesday are still above 500. She was 618 I believe. Which is still great. She will be getting blood work again tomorrow. Her absolute lymphocyte count went down as of Tuesday to 50. The way I see it is that we want to be sure Katlyn is at a safe level with her numbers before we leave. There's no sensing in rushing to go back home when it would just put Katlyn in danger. So we have to wait for this proliferation test to be at 10,000, which just gives all the other counts even more time to get at the right levels, and for us to be that much more sure.
Now on the brightest side of things, they did get some very good results with Katlyn's research blood. When she came here, her toxic metabolite level was at 13% and as of the last time they checked, Katlyn was at 5%, since the gene therapy. That is fantastic. That means the ada enzyme is working in moving those toxic metabolites out of her body. It is going to take time for all of her numbers to come up but it does appear as though the gene therapy is working.
Katlyn's doctor said that with the tests that they are doing and the numbers they are seeing, it does indicate that the gene therapy is working. The way to be sure is by Katlyn going into the real world and seeing how she does. She will get there, but we just want to be sure that she's plenty strong enough. So we are going to take her slow. The child form Argentina was back today for a checkup and he has been at home playing with hos brother and living normal, and he is doing great. Pretty soon that is going to be Katlyn too.
It make me glow from the inside out to think about Katlyn being able to experience everything. She is going to love the world.
Oh yeah I almost forgot to mention that I gave Katlyn a haircut over the weekend. Her bangs were just in her eyes all the time and I just decided to do it. I actually did a good job and her bangs are really cute. And most importantly, they're not in her eyes all the time. She looks so grown up. It's so hard to believe that she is going to be 18 months old in a few days.

Day 63

2007-07-25T13:17:00.000-04:00

So you may have noticed that I have added a little you tube window in Katlyn's blog. The songs that I add here are songs for my dear little Katlyn. I find that these songs completely hit the spot and I just want to have them together so I can let her listen to them. Also so I won't forget.

Katlyn is doing fantastic. Her neautrophil count was 652 yesterday which is a great sign. Although she has dropped a few times, time trend is in an upward curve. You can tell she feels great. She just has so much energy. It's just makes us so happy to see our little girl doing so great. Everyday you can really tell that she feels just a little better.

Her lymphocyte count was 108 too. The doctors want to see her over 100. The third requirement is to have her T-cell activity at 10,000 and as of the results last week, she was 7,000. We should get the results from last week any day now. It's a little more difficult to just look up the results because it's not even done here and therefore it's not in their computer. So, we're just waiting for the doctor to let us know. He said that as soon as Katlyn is 10,000 and her neautrophils are over 500, she will be able to go for a walk outside. I just can't wait. I know she is going to be so excited. You should see her now. Just outside her window is a little courtyard and she always wants us to hold her up so she can see the birds in the trees. She gets so excited when they take off. I can imagine that one we take her out those doors and that fresh air hits her, she will be so happy. And that moment is just around the corner. It's so amazing. I know we still have such a long road ahead of us, but we make progress everyday.

The doctor mentioned today that once Katlyn's T-cell activity comes back at 10,000 or above we can start to make plans to go home. It's incredible. I asked both doctors the same question; "If her neautrophils are over 500, her lymphocytes of 100, t-cell activity at 10,000 and there's ada activity, will you feel confident in saying the gene therapy is working?" Both doctors gave me fairly similar responses. They both feel as though it's already evident that it's working and really the true test will be in the future when she gets sick or gets immunized.

Isn't it incredible?

Besides that our life still remains stressful. Things are still not sorted out between the insurance company. Today I don't care though. I just look at my little girl and think nothing else in the whole world matters. Katlyn is doing fantastic and that is all that matters. The rest are just small details and they'll work out in the end.

2007-07-22T00:48:00.000-04:00

Just to bring everyone up to date. Katlyn is doing fantastic. He neautrophils were up slightly on Driday bringing them to 496. It's slow but it is still progress. They will be doing some tests for anti-neautrophil antibodies just to make sure that say the IVIG isn't interfering and making things harder. Katlyn's personality is fantastic though. She is eating loads more and she's just a little power house running around the room. Lately, I've had to strong desire to paint Katlyn's toenails but Johnathan won't let me. So a few days ago I coloured them in with a purple washable marker. She loved it. It also helped for her to learn toes. Now she is always looking down at her feet and my feet saying "toes." Besides that she will be playing with a marker and will attempt to colour her own toes. So she'll have her toes all scribbled on. Oh well. It's washable and she is really enjoying herself. She actually very artistic. The walls at the hospital are completely covered in crayon, pencil and marker. Johnathan picked me up some magic erasers today because it was starting to look like a back ally in her room. I have never actually used one myself but they are great. It is magic!!! All that crayon comes right off without barely any effort.
So aside from things going really great with Katlyn we have been going through quite a bit of unrelated to Katlyn's health stress lately. The insurance company notified me the other day that they were not going to pay for anything related to me being sick with the kidney stone after April 20th. It's nice that they are paying for the stuff before the 20th, but the stuff after is still $7,000. It's insane. It really seems so unfair. We did everything that we were supposed to do in checking to make sure we had travel insurance before we came here, and learning what that meant for us. We wanted to be prepared just in case anything happened to either of us. When I got here and got sick, I kept the insurance company update to date all the time and they never gave me any indication that anything was wrong. It actually seems as though they just wanted to get away without paying for it. The only thing I can gather is they contacted John's employer and asked them what the status of their employee was, to which they probably indicated he was on a leave of absence, and in return he was taken off the policy. The unfortunate part is we were never notified. The amount of times I had checked to make sure everything was fine before I went for an appointment, and reassured that everything was fine and it still went wrong. We just got caught in some kind of unfortunate loophole. The hard part is paying that money back. Neither of us are working in order to care for Katlyn, and really we both are needed. We have been going on the generous support of our community. The Social worker here is looking to see what can be done on this end and my aunt is trying to work something out in Canada. It's really unclear as to what is going to happen, but we are trying to remain calm. Things are going to work out. The main thing is I'm no longer sick and Katlyn is doing so great.
I guess what they say is true. IT COULD BE WORSE, and it always can.
Those of you who have been praying for us, Thanks so much! Your prayers are greatly appreciated and needed to help us through all of this. Our girl is going to be okay. I can feel it in my heart. She is taking baby steps, but it is still progress and she's moving in the right direction. In the direction of getting better.

2007-07-14T21:25:00.000-04:00

Katlyn's neautrophils have dropped again as of Friday. She was slightly over 300. I don't really know what to say about it. We're not really sure why, other than the fact that Katlyn has always had troubles with her neautrophils. I think that her body just needs to adapt to what's going on. Her body has never done any of this on it's own before and we just need to be very patient. Her monocyte count went up, which by my understanding is good. I believe they will soon turn into lympocytes. I have to talk to Katlyn's doctor tomorrow to know for sure. The doctor that was covering told me she wasn't an expert in this field, but she wasn't concerned. I'll just speak with Katlyn's doctor and see if I can't get a better understanding.
Katlyn is doing very well though. She back to eating well again. We had to basically go backwards with her food, feeding her basically only baby food. Although she still is eating some baby food, she's starting to venture into the solids again. I think that is a fantastic sign. She's very happy too. Always laughing, playing and just having a great time. Since she got her hearing aids back she has been talking a mile a minute. It seems as though there is something wrong with one of the aids, maybe the feedback button isn't turned on, so I'm going to send that one in to get fixed on Monday. It's amazing, Katlyn doesn't take them out anymore. Sometimes I see her reach up for one, but she's just pushing it into her ear. FINALLY!!!!!!!!!!
Katlyn doesn't have blood work again until Tuesday, so hopefully it's up and I have some good news to update. I do have good news though. Katlyn has had her gene therapy and there are small signs that it's working. As time goes on, we will see stronger evidence, but for now we know that something is working in her immune system. Her ada activity this early on is great.

2007-07-12T01:20:00.000-04:00

A lot has happened since the last time I have written, not much worth really noting though. I have to write it anyway because I want to remember that it happened anyway. So we had been told earlier this week that Katlyn is doing great, which she definitely is. Once she had 3 neautrophil counts in a row we started to talk about when it might be time to go back to Canada. The told told us that Katlyn's lymphocyte count was a little borderline where he wants to see it, so he just wanted to watch it over 5 or 6 days to be comfortable letting us go. He said Katlyn T cell activity had to be above 20,000 and hers was 27,000, so she was okay with that. He thought we might be able to go back to Canada as early as next week.
Well, the following day he came into Katlyn's room and was very regretful to inform us that he had been mistaken about Katlyn T cell activity. He said that she's actually around 2,700 instead of 27,000 and that she can't leave until she's 20,000. He apologized profusely and I just know he meant it. It was an honest mistake and the most important thing is Katlyn wasn't harmed. She is okay and nothing has just as far as her doing well. It's probably going to take us at least a month before we can leave, but Katlyn is doing great and that's really all we can ask for. It's really out of our hands. If it would be dangerous to bring her home, we don't want to. That really is the most important thing to us, Katlyn being okay. And she is.
She is doing fantastic. As of Tuesday, her neautrophil count was 595. On Wednesday she was 510 and today was 437. I think the reason we're seeing a little decrease in numbers is because they're checking her everyday. She will be checked again tomorrow and I'm pretty confident they will be up. We will be going back to checking them every Tuesday and Friday again for sanity reasons. The reason why we were checking them every day, is so that her doctor could assess if Katlyn was in fact ready to go back to Canada. Now that we know we're here for a bit longer, we can just monitor the way we had been.
Katlyn finally got the ear molds for her hearing aids today. There had been a mix up with the mail so it took about three weeks for them to get here, which was a bummer. They are great though. Katlyn barely bothered with them all day because they fit so well. She even said at least a dozen new words today including "Home."

2007-07-09T01:12:00.001-04:00

See what that girl is up to. Playing with buttons again.
Sneaky, Sneaky.

So the doctor came in this morning and gave us some very exciting news. The reason why Katlyn is immune compromised is because she has a mistype in her ADA gene. The ADA gene
produces an enzyme called adenosine deaminase that is essential for removing toxic metabolites from her body. Because Katlyn has a faulty gene, the toxic metabolites remain in her system and destroy lymphocytes, and thus is why Katlyn has no functioning immune system.
When Katlyn first entered the study her ADA activity was at an abnormal level around 0, where 60 units is normal. Some of the research blood that they took earlier in the week indicated that Katlyn now has 30 units of ADA activity.
When they inserted a new ADA gene into Katlyn's cells, the new gene should take over the old genes work and correct the problem. As her new ADA gene takes over, it should clean out the toxic metabolites and therefore her lymphocytes should be safe. Her doctor seemed very excited that Katlyn is showing signs that the gene therapy is working.
We are so happy. Katlyn seems to be doing very well. They weren't sure they'd actually see anything at this point, so this is great news. Our girl is going to be okay.
Clinically, Katlyn is doing very well. She is acting like a typical two-year-old, meaning the terrible two's have arrived. That child has become so expressionable all of a sudden. She can stick her bottom lip out almost a foot. Okay not a foot, but you get the idea. She has a lot of teeth now, I've really have lost count just so you get the idea. However, more are on the way. She seems to be drooling buckets again and she was a little fussy this evening. She great though.
Tomorrow morning Cole's mother Jenn and I have an interview with CBC Radio. It will be a taped interview, so I will let everyone when it will air, as well as have a link on her blog.

Day 45

2007-07-07T22:48:00.000-04:00

Katlyn is doing very well. Her neautrophil count as of yesterday was 473, which is a very good sign because she didn't go down. Who knows how long it's going to take her to make her way back up, but I'm very optimistic that's that is what we are seeing. Each time Katlyn has her cells checked we will know more and more and be even more sure of ourselves. It's really hard to base her numbers on one blood count, instead we need to look at the whole trend. From what I've learned, watching over a week or so gives a better idea. So looking at the past week, gives me the idea that Katlyn is up. She's still a little below 500, but she'll get there soon.
I was talking to her doctor about whether or not they will give Katlyn's cells back to her. When she had her harvest done, the took some cells and set them aside just in case they needed them for anything. They are the only cells they have that haven't been exposed to the gene therapy. At 30 days the doctors have the option of giving Katlyn back her cells if her neautrophils aren't above 500 for three blood counts. Well her doctors seem to agree that at this point, giving Katlyn back her cells wouldn't have any benefit. They would like to keep them in case they need them down the road for anything.
Katlyn had some research blood taken on Tuesday and I haven't talked to the doctor about anything they've found yet, but he told the nurse to let us know that the ada activity was good and he would talk to us on Sunday. So I'm just patiently waiting to hear what he has to say tomorrow. I think it must be good. Any signs of ada activity worth noting would be a good sign, because that's what Katlyn is lacking. He had told us they weren't expecting to necessarily see anything this early. We'll see what he has to say tomorrow.
Another thing I found out was that Katlyn will be coming back here once a month for the research blood to be taken. So it will be a month from the Tuesday that just went by. I think we will probably be still here because we have to stay here for at least two weeks after Katlyn hits the 500 mark. Besides, we would like Katlyn to be exposed as little as possible, ideally not at all. The less plane trips the better, is the way I see it. It really wouldn't make sense for us to go home one week and come back the next. It think it would be in her best interest to wait it out.
So we are trying our best to get things at home all sorted out for when Katlyn goes back. We need to purchase hepa filters, a water purifying system, tear up carpets etc. etc. It's really quite a struggle since we don't know much about the hepa or water purifier. Besides that neither of us has worked in a really long time. I'm trying to do a little research to see if there's any funding available for the water purifier. It would be nice if we could find something, because from what I've seen so far, they are not cheap. It's not optional though. Katlyn must have clean water for both consumption and bathing in order to go home. Things will work out.

Day 43

2007-07-05T17:11:00.000-04:00

Tomorrow is blood work day. I'll keep everyone posted. Oh yeah and CBC Radio called me this morning and asked me if I'd like to do an interview about Katlyn on Friday. I'm not sure but I'll post the information as soon as I know. Katlyn is doing very well. Her appetite has been a little off lately. I don't think anything is wrong, I think it's just either her age or a form of control. Who knows. We're managing though. We rotate her supper with spaghetti for one spoon and strawberry jello for the next.
She is getting smarter and smarter everyday. Today she had a great day and was full of so much energy. She started to say "oh, man."
The other day I was at the flea market in Bethesda and I came across this little wooden Buddha. So of course I had to bring it to Katlyn for luck. Well, she carries Buddha around with her everywhere. She loves him so much. This morning John woke up to Katlyn saying "hi Dad. Hi Buddha." It really is very cute. It's not lightest piece of wood and she lugs it around everywhere. Well, I guess Buddha weighs nothing compared to the flat of 12 bottles of formula that she was lugging around another day.

Day 42

2007-07-04T15:00:00.000-04:00

So today is day 42 since Katlyn had her gene therepy and this are going very well. Yesterday Katlyn had a neautrophil count of 460 which is progress. Hopefully she keeps going up. We will find out more on Friday. If she still there or possible a little higher, then we moving in the right direction. Once Katlyn has four counts at 500 or higher, we are allowed to go back to the IWK. We just can't wait. I think we get more and more home sick everyday.
She is doing great though. You can tell she feels wonderful.

Pics

2007-07-03T14:30:00.000-04:00

2007-07-01T00:20:00.000-04:00

Katlyn getting in trouble.
Drawing on the fridge.

Running away from me with crayon.
See how silly she can be.
Really silly!!!!!!!!!!!!!
And a little bugger too!!!!!
Sneaking back in for more trouble. Probably to try and play with the plugs I imagine.

Sorry I haven't updated Katlyn's blog in a little while. We have been pretty busy and there hasn't been a whole lot to update. Katlyn had her blood work on Friday and her neautrophil count was 270. We're still waiting for her to take that leap and start climbing back up. I had a talk with her doctor about it and he feels that Katlyn is doing fine. They are learning that some
reason some children with ada scid have a problem with their neautrophils. It seems that some of them take a little longer to climb back up than other. He said it doesn't seem as though they have done any permanent damage to Katlyn's bone marrow with the chemo because her other counts are fine. The expect in such a case her hemoglobin's and platelets would be low and for Katlyn they are normal. When she had her harvest her hemoglobin's did drop for a bit, which they were expecting to happen anyway, but then they climbed back up and they're fine. So we just have to be patient and wait.
There is a 30 day rule. After 30 days if they see 3 neautrophil counts under 500, they have the option to give Katlyn her bone marrow back. Her doctor told us they were just going to see what happens and make a decision at that time. It may be that they might make an exception because they never took into account that sometimes they have a bit of a struggle with their neautrophils. If they ever do give Katlyn the cells back, it doesn't erase the gene therapy or anything like that. They are only going to do that if they feel it's in Katlyn's best interests.
On Tuesday Katlyn will have her counts checked again as well as her first research blood taken. This research blood will be used to measured a lot of different things including how much ada activity is detected in Katlyn's system.
We just keep praying, stay strong and try our best to make sure Katlyn stays safe. She's going to do great and this time next year she is going to have almost a fully functioning immune system. I just know it. Our girl is a little fight.
Oh yeah, I wanted to update my four-leave-clover count. On Saturday I found 7 four-leave-clovers and 1 five-leave-clover. I didn't even know there was such a thing as five. They are all on Katlyn's window though to give her good luck. I just think it's pretty neat how I found so many in one day. The total is 11 four-leave-clovers since we have been here and one five.

Today marks the anniversary of the day my younger brother was killed in a car accident. He was only 18 and the shock was unbelievable for myself and my family. This day is a very hard day for me and I know it especially hard for my mother. There isn't one day that doesn't go by that I don't think about him. Sometimes I wonder what it would be like to have him around now. I just know that he would love Katlyn so much. I feel he is watching over her though. I know this blog is about Katlyn, but I feel as though my primary reason for starting it was to look back on it some day with her. Although she will never have the opportunity to be able to know my brother, I want her to know how much he means to my family and I, and besides she's a part of him. He would love you so much Katlyn, I just know it.

GALLANT - In loving memory of Kurtis, who passed away July 1, 2004.

This month comes with sad regret,
Brings back a day we will never forget
The blow was great, the shock severe,
We little thought the end was near.
And only those who have lost can tell,
The pain of parting without farewell
No one knows the grief we bear
When the family meets & you're not there
You left so suddenly,our thoughts unknown
But you left us memories, we are proud to own
In our hearts forever Daisy, Mom, friends & family

2007-06-27T23:47:00.000-04:00

Hmmmmmmm............
HI!!!!!!
Look, a little teenager already.

This place is little crazier this week compared to how it has been since we first got here. Apparently a lot of the children's appointments are scheduled during their summer break, and since school is out, this place is swarming with children. I find it kind of overwhelming. We're just used to everything being pretty quiet around here, especially on the weekends. However, as one of the nurses informed us last night, that will no longer be. I just can't wait until it's time to go home. We are so homesick and we just want Katlyn better. Even if we can't go home home for a bit, that's okay. I think we'd feel better being closer to home anyway.
Katlyn is doing very well. She has had a huge amount of energy in the past few days, which has to be a good sign. Her easting getting back on track also. It's hard to say if she was a little off because of the chemo maybe, or because of her age or maybe she's using it as a form of control. Who knows. All we know is that Katlyn still eats well no matter what and it seems that she's been eating better and better everyday. She was weighed today and still weighs the same as when she first got here, 28 lbs. That is exactly what we wanted anyhow. She needed to catch up to weight with height and that's exactly what she's doing now, plus she's running around like crazy.
So Katlyn's doctor told us today they were going to investigate this elevated heart enzyme further. They are not going to do anything to compromise anything for Katlyn in anyway, meaning doing anything invasive. They just want to be sure it's not anything that's being overlooked. So she will have a consult with a geneticists tomorrow, where he will ask a load of questions, examine Katlyn and order specific blood work. They just want to make sure there isn't anything wrong. There is just so much that they don't know about Katlyn's illness, and where at a research hospital, they want to investigate everything they possibly can about Katlyn. We appreciate it too. Her doctor said this enzyme had been elevated when we first got here and then it went down, and again back up after the gene therapy. He also said that in a normal healthy person they wouldn't be concerned at all, but because Katlyn has ADA SCID, they just want to be sure everything is okay. So it's just a safety measure.
Oh yeah, I also wanted to let everyone know that since we have been here I have found four 4-leave-clovers. That's right, four. That's got to be lucky. They are all in Katlyn's window in her hospital room. It almost seems that when we need it the most I just happen to look down, and poof, there's a four-leave-clover. I know, I know, but you must admit it is pretty lucky. I have found eight four-leave-clovers to date. Seven of those since we've had Katlyn. She is going to be okay. I just know it.
I have Faith.

2007-06-25T16:58:00.000-04:00

I know I saw that in my book somewhere....
The birds are so beautiful outside, and look at the trees.........
Hi Dad!!!!!
Hehehehe!!!!!! I'm back here!!!!! Surprise.

Today is a great day. Katlyn is doing very well. She has so much energy today and it's so great to see her like that. It's not as though she has lack of energy any other time, it's just that today she has so much extra. That's just wonderful. She is so happy. Daddy has been introducing her to a wide range of music over the last couple of days, and by watching her singing and bobbing her head to Thunderstruck by ACDC, I'd say Katlyn is really enjoying herself. She's such a doll. Yesterday I found her one of those basketball nets that you can put over a door frame etc. Well, we set it up today and Katlyn had no questions about how to use it. She took right off and is playing with it very nicely. She just seems to figure all of these things out on her own. She's really quite amazing. She healthy.
So her blood work is going to be more spread out and will be done every Tuesday and Friday, except for today because she was checked yesterday. So, we'll talk neautrophils on Friday and I feel optimistic that her numbers will be up. I think Katlyn is on the rise now. It was driving us crazy checking them ever day because she would bounce up and down of course. Now that we're checking them less frequently, I think we'll get a better curve.

2007-06-25T13:56:00.000-04:00

Do you want something?
me and my daddy
Yeah right!!!!
Daddy and Katlyn dancing
So cute.
Yeah, that was fun!!!

Katlyn's neautrophils were up a bit yesterday to 393 and today they were 333. So things are looking a little up. We are optimistic that things are going great. So today is day 30 post transplant for Katlyn and for now on they will stop taking Katlyn's blood everyday. Instead her blood draws will be twice a week. I think will make things a lot easier for everyone. Instead of watching the numbers so closely everyday and seeing her bounce up and down so much, this should give us a better idea of where she really is.
Katlyn is doing very well. Her platelets and haemoglobin's remain at normal level and her white blood cell count seems to be rising, and as a result her neautrophils are rising also. Her liver enzymes are monitored in two ways and in one way they see the levels have come down after being slightly elevated and in the other they remain slightly elevated. Also, one of Katlyn's heart enzymes is slightly elevated as I believe I mentioned when we first came her, but her doctor feels as though it's nothing to worry about. He is going to consult a heart specialist once again and get his input. There ways of seeing why this enzyme is elevated but the means are invasive, so they would like to stay away from doing anything that may upset the balance of a healthy child. The doctor said if he saw this enzyme elevated in say John, then they wouldn't think twice about it. They would conclude that it wasn't worth investigating because Johnathan is a perfectly healthy person and the particular enzyme elevated just slightly isn't enough to indicate there's a problem worth investigating.
Mind you Katlyn is a special case because of her condition. They just want to be overly cautious, at the same time they don't want to jeopardize her in any way. All the tests that they have done so far indicate that Katlyn's heart is perfectly normal and there's nothing to be concerned about. All in all, they just have to make us aware of everything they know about Katlyn. However, they feel that things are great and we shouldn't investigate this anymore at this time and they're just going to get another opinion to be sure.

2007-06-23T23:54:00.001-04:00

Sorry I haven't written anything in awhile. There just hasn't been any new news. Katlyn still maintains a neautrophil level around 240. Each day we hope to see her counts go up, but so far nothing has happened. We are being very patient. It is hard because we are just so close and just want our baby girl better. She is doing great though. No issues at all other than her neautrophils being a little slow, which, if you follow Katlyn's story, you know has been an ongoing issue.
The doctors feels that things are good though because her other numbers look great. They also see her neautrophils fluctuate a little bit, which indicates some activity. They feel as though if things were not working then her numbers would just drop completely and wouldn't come up at all. Right now they don't really know for sure what is going on or how long things are going to take, because they are just learning that some ada scid children have problems with there neautrophils (why some and not all, they don't know). This is how things are when you're participating in a research study. Not all things are known, and they learn a lot from Katlyn.
For now they are keeping a very close eye on Katlyn's numbers to make sure she doesn't get too low. Her blood is checked everyday and everyday John and I anxiously await those numbers. Any day now we should start seeing her go back up. We have no idea how long it is going to take but Katlyn is healthy otherwise and happy and as long as we can keep her that way, things are great. It will be so nice when we don't have to worry as much though, and for sure that day is getting nearer with each passing day.

2007-06-19T23:00:00.000-04:00

Since the last time I have wrote Katlyn has been doing nothing but dropping with her neautrophils she went all the way down yesterday to 202. Today was a wonderful day. Katlyn made a big leap up to 360. We really hope this is where she start to keep the uphill direction. Her doctor seems to believe that it is a lot bigger jump than in the past and that the chemistry in her body is actually changing. I really think he's right. Today if Katlyn's number dropped again and she was 200 or less, they were going to give her some GCSF, which is a bone marrow stimulator that would cause Katlyn's neautrophils to shoot up. They don't want to use it if they don't have to because they are not sure if that may slow the process of cell growth long term, or have any other effect. Of course they were going to use it if Katlyn's numbers dropped too low because they didn't want her to be in danger, which of course we're thankful for. But her numbers went up and the G was called off. YEAH!!!!!!
I woke up this morning after Katlyn and I had a really great night's rest and I just had this overwhelming feeling that her numbers were going to be better.
We hadn't really noticed that Katlyn was acting a little off until we saw her go today. She felt so great and had so much energy. It was so wonderful. We just love to see signs like that, because that the first sign that something is going great. That girl didn't stop all day. She was ripping and roaring, singing and dancing all day long until bed time when she drank 4 ounces of milk add passed out. Usually she drink at least 8 ounces, but I'm telling you she had worn herself out.
I hope that she gets another great nights rest tonight and feels fantastic again tomorrow.
Katlyn is doing great. I really believe that we are heading upwards now.

Baby in deep thought

2007-06-15T23:49:00.000-04:00

Hmmmmm....I wonder how long it will be before I can go to med school.

2007-06-15T23:20:00.000-04:00

Just to let everyone know, Katlyn's neautrophils went up a bit today. Yesterday she had dropped to 309 and today she was 359. I guess this is exactly what Katlyn is supposed to do anyhow. Although she is neautrophenic and it's pretty stressful right now going through that alone, she needs to have her counts drop like this. This way her new cells will have an unfair advantage over her old cells. That is exactly what we want to happen. So it's only a matter of time and Katlyn will not be neautrophenic anymore. The great thing about it is that when she goes up this time it will actually be her doing it and not PEG ADA. Any progress that we see from here on out, will the gene therapy. We are so excited because we know that our baby girl is going to get better and it has already started. There is no more waiting for things to get done anymore. The procedure has been done and it's only a matter of time before Katlyn's immune system is fully functioning. The doctor said we should she lymphocytes in about 6-12 months after the therapy. But just to put every ones mind at ease, Katlyn is doing what she is supposed to do.
Oh yeah, I also wanted to tell a very cute story about Katlyn today. Katlyn was having her nap and she was hooked up to her IV, because they switched one of her oral medications to intravenous because her liver enzymes are slightly elevated (which isn't at a dangerous level. A lot of things could have cause it ex: chemo. They just wanted to changed her medicine to err on the side of caution.) Anyhow, while Katlyn was taking her nap Johnathan and I went to the Children's Inn for a little bit. Well when I came back Katlyn's pump was beeping and I could see the display saying air in line. Well it woke Katlyn up. So she sits up and reaches out of the bars of her crib and hits the restart button to quiet the machine down. It was pretty impressive. There are tons of buttons on the machine and it wasn't even like she was pressing them all. She just hit one. That's my girl. I think she might work at the IWK someday.
All is good though. Katlyn is doing fantastic.

2007-06-12T22:36:00.000-04:00

Thought I'd throw in a few more pics because I haven't been writing on here as often as I would like. I do have a very cute video at the hospital to post on here and I will just as soon as I get a chance.

2007-06-12T22:19:00.001-04:00

Sometimes she just looks at me like, "mom what do you think you're doing.
Oh, Happy baby!!!!
Me and my baby girl.
This is a picture of the NIH Clinical Centre
This is a picture of the Children's Inn where John and I take turns sleeping.

Katlyn has been doing very well but her neautrophils are still dropping. Since the last time I wrote Katlyn dropped to 460 on Sunday then up to 569 and today down to 360. I guess she has to drop before she goes up. I just wish that she would stop dropping already. It really makes us nervous for her to be below 500 because apparently 500 is what they call the safe point. So I know that we are extremely careful anyway and it's probably hard to believe that we could get much more careful, but we could and we have. I bet there may be a huge sigh of relief when we go home, because of all the hounding we have been doing. We are just trying to make sure things are done the right way, and Katlyn isn't in danger because someone was careless. We are her advocates, and we need to protect her the best we can.
She is doing great though. Because her counts have dropped, we have to check her temperature every four hours, and there hasn't been a problem. She is doing very well. I'm sure that she'll stop dropping any day now and then we can get ready to go back to the IWK.

Blood work today

2007-06-08T23:44:00.000-04:00

So everything went fine with Katlyn's blood work today. She did exactly what her doctor said and still went down. She is now at a neautrophil level of 560. That is down but she is still good. The chemo does play a toll on their white blood cells, so they were expecting this. He said he doesn't expect Katlyn will drop much more if she does at all. So, they will be collecting blood over the weekend each day, for sure to follow her. That way they can keep a close eye on things. So her platelets are still great and her haemoglobins are back to normal so she is no longer anemic. YEAH!!!!
Katlyn is really doing great. The doctor said that it is really hard to tell for sure exactly what is going to happen, but he thinks maybe her neutrophils will come back up to where they were before she got the chemo in about the same time it took them to go down.
The other child is having some problems with his neautrophils and the doctor thinks it may be due to either a viral infection or a certain antibiotic, so he will be avoiding that family of antibiotics.
Things are great though. Katlyn has given up on having a nap I think. But the nice thing is she's in bed a lot earlier than midnight now. I knew it was only a matter of time before that happened anyway.

2007-06-07T21:41:00.000-04:00

This picture is Dr. Sokolic, Katlyn's doctor holding those beautiful magical cells that are going to make her better
Katlyn wearing her lucky Dora hat during the procedure.
Dr. Sokolic injecting cells in her.
By the way, it was rock-paper-scissors over who had to video tape and who got to hold Katlyn, and I lost of course. The moment was just so surreal. Katlyn now has two birthdays.

I'm so sorry it took me so long to get this video and pics on here of Katlyn's procedure. I just had to make sure that her doctor was okay with me putting it on here for everyone to see, since he's in it too. He was away for awhile, but everything is fine. So here you all go. The actual procedure took about 40 secs. Imagine that. The amount of time that we have put into preparation and it only took 40 sec. Well I'd say that 40 secs was one of the most important 40 we'll ever know.
As for an update on Katlyn I just needed to tell everyone that she is doing fantastic. The doctor's were expecting one thing to happen and hoping for another and Katlyn is doing more than they can hope for. She is great. Her neautrophils as of Tuesday were 820, which means that she had gone up. Now she was supposed to get blood work done today but they switched blood draw to Fridays. So we'll have a better picture tomorrow. She had some research blood drawn this week and there was some great ADA activity for this stage, more than they were expecting. So the doctor told me that according to the protocol they have to keep her here until day 30. If by that time she has no problems with her platelets (which she hasn't, knock on wood), her neautrophils have to be above 500 for at least 4 blood draws and her neautrophils can be declining anymore, than she will be able to go back to the IWK. YEAH!!!!!!!!!!!!
I can't wait. It's a lot closer than we anticipated and we are so excited. So our girl is doing fantastic. The doctor actually said that what they are seeing is textbook gene therapy. YEAH!!!
Thanks everyone for all your praying and kind words. It definitely makes this time a little easier knowing we have such great support, not to mention that we have little trooper Katlyn surprising everyone.
We still have a long road ahead of us, but we are definitely making progress.

So Funny

2007-06-05T19:04:00.000-04:00

One of the most hilarious things I have ever saw just happened. Katlyn has one of those plastic lawn chairs, you know the ones. They are completely plastic and all one piece. Well hers is the same, only a lot smaller. Well, I was sitting hear clearing up her supper that she wasn't interested in eating when I heard some grunting noises. I looked over and Katlyn was sitting in front of the mirror with this chair over her head. She had her head right where the back and rest of the chair meet, yeah the arm meets there so it's like a big hole in the chair. Anyways I sat there thinking okay Katlyn you can get out of that. Come on girl. So she tried and tried then she got really upset so I went over to investigate and help her out. The holes are pretty big so I didn't really think it was going to be a problem. Well I pulled, and I turned her head and pulled a few times and realized she was stuck. I hit the nurse call button and when the nurse asked what I needed I had to say "Katlyn has her head stuck in a chair and I need some help. She asked what I said so I said it again and she said she'd be right there.
By this time Katlyn was getting pretty upset. I told her she might have to stay like that forever, with her head stuck in a chair. She didn't like that. I was in tears because I was laughing so much. I decided the best way to handle it was to keep her calm so we started to read a book, sitting in front of the mirror with her head stuck in a chair.
The nurse came in and assessed the situation. She held Katlyns ears while I carefully pulled the chair off her head. She was so happy she started clapping. The poor little buggy. The nurse said she couldn't even understand me but decided I must need her for something and decided to come quickly. She probably couldn't understand me because I was all the way across the room and laughing. It really was just so cute and I'll never forget it.

2007-06-05T10:05:00.000-04:00

Katlyn is doing very well. Yesterday she had to get some blood work done and her neautrophils were up a bit compared to Thursday. She had been 700 and yesterday she was 820. It's hard to say what's going on exactly. Her doctor said there is still a possibility that she could drop over the next 2 or three weeks. Hopefully, that's not the case and she keeps climbing up. If she still drops then hopefully it's just slightly. Her doctor told us then when Katlyn's neautrophils are above 500 and there is so lymphocyte activity, then we can go back to Halifax. From there it's unknown because it's up to her doctor at the IWK and what he wants to do. Understandably, we do live a 8 hour drive from the hospital.
Her doctor here just wants to get her home as soon as possible because he doesn't want to put her at more risk either at the clinical center or Children's Inn, which of course we can appreciate. I'm so thankful they want to be just as careful as we do. Dr. Issekutz, at the IWK, is a very very careful doctor as well. We trust him and know that whatever he decides is the best thing to do.
All is well though. She looks great and from what I can see, she feels great too. She started to pick her nose recently also. She was standing in the corner very quietly and went over to see what she was doing and sure enough she had her finger shoved right up there. What a little bugger.

Day 6

2007-06-01T17:26:00.000-04:00

Katlyn always seems to be running around with her notepad and either a pencil or crayon.
It will be so nice when we can actually let her walk out the door. She's trying to figure out how to operate it on her own.
Katlyn playing with her grocery cart. If you notice behind her there's lots of coloring on the door and wall. She must have forgot about the notepad that day.
Cute as a button. That's my little Buggy.

So there hasn't been any real news of yet. Right now we are still waiting for her cells to hit their lowest. They must do this first before they can start to go back up. In the past they usually see this happen within 10 days of the chemo and right now we're day 9. As of Thursday her neautrophils were 700 and we expect that they'll go lower by Monday, her next blood draw. How far, we don't know. This process is unfortunately necessary in order to give Katlyn's new cells an unfair advantage over her old ones. So first we'll see everything go down, and then everything will come back up. The first thing we'll be watching will be her neautrophils and then after awhile her lymphocytes. The main focus right now is neautrophils and Katlyn's are doing pretty good. The kind of think of 500 as a milestone or a safety. 500 isn't high, but it's a start.

Everything is fine though. We're just keeping ourselves really busy trying to keep Katlyn healthy.

2007-05-28T13:15:00.000-04:00

Thes pics are from chemo day when we didn't know if things were going to happen. So Katlyn was a ninja that day.
These are pics I took of transplant day. She's so pretty!!!

We just have to wait until Katlyn's doctors is okay with the pictures going on her blog. His in them because he administered her news cells back in her body. Sorry about the delay but I will get them on here as soon as I can.