Day 0: Cell-ebration Day!!

Well, today is the big day! Actually, we've been told that transplant day, aka new cell day, is sometimes disappointing to families because it's seems uneventful. The actual process of receiving new stem cells isn't much different from receiving a blood transfusion. Plus, there is no immediate result. Usually, blood counts get worse before they engraft and start producing their own cells. But, I'm pretty excited about it.

At least I was until support group yesterday. The BMT unit has a weekly support group for the families here to meet in the parent lounge, enjoy some pizza, and talk about how things are going if you want. I didn't go last week, but yesterday the social worker reminded me of it, and I thought, "Why not?" I was ready for a break. We all introduced ourselves and shared why we're here briefly, and then parents started talking. I caught myself breaking down multiple times because there were some parents whose tears were just flowing as they talked, and I felt so bad for them. Plus I could relate to many of the feelings being expressed. But the more I heard from some of them increased my anxiety level. I love details and information, but sometimes ignorance really is bliss. A couple moms talked about the mucousitis that their kids were experiencing, which is basically sores and inflammation throughout the mouth and GI tract from the chemo. One lady said her 17 year old son is on 2 pain pumps, and he's day +9 post transplant. It made me worry because Avery has some beginning mucousitis, and he has no way of expressing how uncomfortable he is. He's not eating much, so it must be bothering him, but he complains so little that I wouldn't know if he needed pain meds or not. It is expected to only get worse over the next few weeks. Then a couple started talking about their 10 month old who is Day +30 post transplant and how they had a child die in 09 from the same genetic condition their son has. I heard about a child whose new cells never engrafted and he passed a couple months ago. It was so heart breaking! I have been focusing on the positive and not even considering the "what if it doesn't work" option, but yesterday made that option more of a reality. So, I'm not sure if I'll be frequenting the support group in the near future.

Avery was up until 1:30 again last night. His sleep schedule continues to get more and more messed up. It's hard for me to be annoyed with him when he's so happy about it, though. It has made for one exhausted mama, though. The late nights, countless interruptions throughout the nights, and stressful days are taking their toll.

They're going to be starting Avery on extra fluids today because they want him to be well hydrated when the new cells arrive. The stem cells are being harvested this morning from the donor, processed, and then transported to Cincinnati. They are expected to arrive here around 9:30, and Avery will be given them immediately while they're "fresh." The length of the infusion will depend upon the volume they're able to harvest and send. It will be adjusted for Avery's age/weight, and then they will be put through his central line over a series of several hours with vitals every 15 minutes to monitor his reaction. He will also be premedicated with benedryl and tylenol.

I have had a few worried moments last night and this morning. What if the donor backs out at the last minute or something would happen to the cells during transport?? I know, the chances are minuscule, but those thoughts have crossed my mind.

I will try to update with more details later. Thanks everyone for your prayers today!

Eagerly waiting in Cincy,
Bethany