Tuesday, August 5, 2008
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.
Friday, August 1, 2008
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.