So for the last week have been trying to think of what to write about and it has been so up and down that I just couldn't figure out what I wanted to talk about. I feel like for some reason I have been avoiding talking about our chemo appointments so I'm just going to talk about that!
Lily has had 3 outpatient chemo sessions thus far. Basically we go in and first thing that they do is take her vitals. Then they put her in a room where she sits on my lap and they access her port and draw blood to send to the lab. I have a numbing cream that I put on it so its numb when they access it and she hardly even feels it (not that she still doesn't like it). Then we go in a room and talk to the Doctor! They do the labs pretty fast so usually by this time we have her blood counts back and we can discuss everything we need to. Right now we only go to chemo once a week and it only takes about 20 mins for her to get her whole dose of Vincristine. We go in the chemo bay with her IV stand and its just a big room and they have beds or chairs with TVs where you can watch movies, play WI or Xbox, they have IPads to play with. Then they have a play area with little tables and chairs where the kids can play with all sorts of toys and games or eat lunch. They have pet and music therapists that come in also and talk to the kids and try to cheer them up.
Lily must usually go on a quiet day because she has only really had one other little boy in there with her. His name was Gabrielle and he was just a few months older than Lily. He was so cute and he was sharing with Lily and they were playing together and I thought " Wow. Is this really when/where we will have our play dates now? Okay, see you at chemo next week!" Unfortunately we have not seen Gabriel again yet, but I'm sure as time goes on we will meet other new kids.
So that's chemo. Pretty uneventful really. Lily of course hates it at first but then she usually calms down and is able to just relax. I know its kinda sick in some way but I actually like chemo day and I thinks its because I feel like I am doing something! Most days I just feel so helpless but when we are in chemo, its progress.
Latest Update!!!
So we knew that Lily had ALL (Acute Lymphoblastic Leukemia) but with all things there are specific types. When Lily had her first bone marrow biopsy they sent the bone marrow to a geneticist to find out exactly what type (or the name) of leukemia she had. Soooo science lesson real quick. For each of our chromosomes there are structures and there are numbers. Lily has a structural anomaly that has somehow mutated and caused her leukemia, which basically means that a piece of one chromosome broke off and attached itself to another chromosome, as opposed to there being an extra/missing chromosome (that would be a number anomaly). (You with me so far? ;)) Okay so there are for 4 really bad types of ALL and luckily Lily doesn't have any of those, and there are 2 really good and predictable types of ALL which unfortunately she doesn't have either. That means she is considered "Intermediate Risk". Okay so going back the science lesson, Lily's structural anomaly occurs on gene TCF3. Usually TCF3 breaks off of its self and attaches to chromosome #19. This is a really predictable leukemia with high survival rate. But in Lily case TCF3 has broken off but they don't know where it went. It didn't attach to #19 like usual. They don't know how this will affect her treatment yet. Her Dr. doesn't really think so far that it will pose a problem. Next week we will be in our 4th week of treatment and we will be doing another bone marrow biopsy to see how much leukemia is still visible and alive. Our goal is to have none and be officially in remission!! If that is the case we will start our second phase of treatment to kill all leukemic cells we cant see. Next Wednesday will be a big day for us because we will finally know if this chromosome mystery is going to affect her treatment and survival rate or not.
So far this whole situation is just so surreal that I'm still trying to decide if I've fully accepted it or not. We stop our steroids on Wed next week and then she will start to return to us and I cant wait until that day!!!!!!!! I miss her so much I really do. I hope when she comes back that she somewhat looks and acts like her self again. Pray for Lily to come back!
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