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!!!!

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.

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

GCSF

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

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

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

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.

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!!!!!!!!!!!!!!

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

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

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.

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.

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.

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.

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

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.