Where to even begin.....
Yesterday was a day for the books. It started out with an EKG & Eco that Cole was not too happy about, so they couldn't even finish :/. Then we had a 5 hour break then a meeting with Occupational Therapy. They said Cole is on target for his age and even above in some categories! YAY...GO COLE! Then after was the dreaded family conference....
I honestly don't even know where to start...I guess on a good note...I LOVE his transplant doctor. Dr. Yu is so nice & I'm so thankful for that. She started by telling us that his transplant date has been moved to April 9, 2012 intstead of April 8th. She said that Cole will be admitted between 12-3 on the 9th and we'll go to a regular room. They'll then begin looking over his body to make sure there are no rashes, etc. Then around 6-8 that night he will receive a "special bath" to disinfect him. After that he will be brought to his transplant room. During that time, I will be required (since I'm staying with him 24/7) to wear a mask & gloves. Ahhhh...can you imagine sleeping in that stuffy thing...but I'll make do! Also, there will be no running water (ex. toilets, showers, sinks) in his transplant room. They said that can cause bacteria to grow so I will be required to use a shower and bathroom in the hall that all the transplant parents and caregivers use. Also, I cannot eat in the room. Whenever I want to eat, I must go in the hallway or to the kitchen area. UGH this stresses me out, but I know it's for the best. I can see many many days ahead of blogging, reading and crossword puzzles! On April 10th, he'll start a chemo called Fludarabine it'll be given over 30 min. for 5 days. On the fifth day, April 14th, he will also have a chemo medicine called Thiotepa. Then on the 15th he'll have a chemo medicine called Melphalan. Dr. Yu said their main concern for him having Thiotepa and Melphalan is liver problems. It can cause (frequently) blood clots on his liver (VOD of the liver). Wow...to think my child could possibly have blood clots...ughhh I'm so stressed just contemplating that! I'm so scared because "FATAL" was mentioned SOOO many times during this conference. I realise they HAVE to tell us the pros and cons, but hearing it made it oh so real and soooo scary!! On April 16th & 17th he'll have 2 days of rest then on the 18th he'll have his cord blood transfusion which will last about 10-15 minutes. How crazy to think the actual transfusion will be so short! Between days 14 & 42 they'll be looking for engraftment. 1 month post BMT they want 35% cord and 3 months they want 75% cord. 3-5 weeks after BMT they probably will discharge & we'll have to go to the clinic every day. We have the option, because we live close, to come home and travel everyday, but IDK if I want to. They said we could stay at the Ronald McDonald House and I'm thinking we probably will because I don't want to be an hour away and he go down hill or something. I just think about the worst possible thing I guess. I need to stop doing that, but it's so hard to know the things to come for my little man! 100-120 days after BMT he'll be given IVIG and 2 years after the full transplant is about the time they'll say he's cured or not, but his entire life he'll be tested for side effects from the medicine he'll be getting.
This previous paragraph stresses me out even typing it because it makes it seem that real yet again. The entire way home yesterday I just kept praying for strength. I kept telling God how scared I was and I truly am. I'm still scared. I'm scared of the "what if's". You just never know, but I have to trust in the main man up stairs to take care of Cole. Dr. Yu said yesterday that I need to get away some and not stay with Cole all the time.... ummm YEAH RIGHT...I refuse to leave him! I haven't left him yet and I don't plan on it anytime soon!!! Cole has got such a long road ahead of him, but I thank God that he is so young because I really don't think he knows what's going on. He ALWAYS has a smile on his face no matter what...so that helps me to stay strong knowing how strong he is!
Ya'll I can't even begin to explain just how scary this is. I feel like he has to go through so much for being so young and this breaks my heart! I don't want him sick...I don't want him going through all these life threatening procedures....this isn't fair! I keep thinking about all the mommy & daddies that could care less about their child(ren) & they're so healthy...they're so lucky to not have to go through any of this! Even though I say that, I wouldn't change Cole for the world. In my eyes, he's perfect as can be and is my bestfriend!
-Cole's Mommy
You have to accept whatever comes and the only important thing is that you meet it with courage and with the best that you have to give.
- Eleanor Roosevelt
I think your best friend is perfect too! Love and prayers, always! Lori
ReplyDeleteOh Laci, I am praying and thinking of y'all constantly. You are such an inspiration to me. Cole is so lucky to have you as his mommy, and you are lucky to have him. I am praying that this goes as easily as it can. I cannot even begin to imagine how scared you are, but it seems like you have so much support, I hope you get some peace by that. Just remember, you are doing this for his life! :) What a miracle that they have the tools to give him a healthy life, and he will not remember this. I am praying for strength for you and your husband. Look how far he Cole has come already. Praying for you. :)
ReplyDeleteNicolle Lee