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.