Three Years Old and Surgery

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.

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