Day 0 - Transplant Day! Happy Re-Birthday Chase!

Thank you so much for all of the continued prayers!  Chase truly has an army lifting him up!

I know I've been very remiss with this blog/carepage for Chase and I apologize.  Every time it looks like I can sit and write, I'm distracted by the need for sleep (who would've thought I'd need that!) or something I can't even recall. I'm hoping to (eventually) backtrack and share some of what's been going on, but for now I'll do my best to keep this updated. One step at a time.  This post rambles a bit, but I've written it over a three-day period.  I tried to break it up in case some is old news so you can skip/skim over it.

Chase's transplant on Thursday started a little after 2:00pm.  Rebecca, his primary nurse who was with us on his last transplant day, was with us again and is here today as well.  It's difficult to explain what it means to have her here with us.  There is a simply a feeling of comfort and peace that I feel.  We've known Rebecca for almost two years, so that definitely plays a role, but she really knows Chase (health and personality), which is worth its weight in gold!

His Donor

He and his donor were not the same blood type, something I didn't learn until the day before his transplant.  Where Chase is A-, his donor is B+, which meant the marrow had to be thoroughly cleansed of red blood cells to prevent a reaction.  This also means Chase will no longer be A-!! He will take on his donor's blood type.  It's a corny play on words, but I can't think of a better blood type to change to than B+ (Be Positive)!  

We still don't know the gender of his donor and may never find out.  Whoever they are, they've selflessly given Chase an incredible gift - a re-birthday and the opportunity for a cancer-free future!  I'm truly humbled and will be eternally grateful to him/her for their generosity.  

About the donor program "Be The Match"

9 MILLION people in the U.S. have registered to be potential bone marrow donors and there are over 140,000 cord blood units available through Be The Match (National Marrow Donor Program).  However, there were only 6 matches for Chase.  That quickly dropped to 3 viable donors two weeks later.  I wasn't aware of these figures until I started writing this post.  I had no idea there were that many people in the registry.  That he had 3 desirable matches out of 9 million makes me again appreciate how blessed Chase is to have his new marrow.  

When I speak of "desirable" matches, I'm referring to HLA compatibility. Explaining this is not the easiest thing to do, so I copied the information below from their website.  If you would like to read more information about it, please visit this page on the Be The Match site.

"Human leukocyte antigen (HLA) typing is used to match patients and donors for bone marrow or cord blood transplants (also called BMT). HLA are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not.

A close match between your HLA markers and your donor's can reduce the risk that your immune cells will attack your donor's cells or that your donor's immune system will attack your body after the transplant."

Chase had 3 "8 out of 8" HLA matches. He also had potential matches that were less than 8 of 8 as well as cord blood matches, but those would have only been considered if our initial three did not work.  The fewer HLA marker matches you have in common, the greater the chance of complications and a longer recovery period.

Quick Aside About William

I never want to take away or diminish what William did for his brother!  He was/is a hero and I am still so incredibly proud of him!! He gave Chase another six months to bring us to this point.  We do know the donor travels out of the country quite often, so it has crossed my mind they may not have been available back in April. It devastates me that Chase has to go through this again, but permanent remission and the boys being able to enjoy a normal routine again will be worth it in the long run.

Blood Product Transfusions

Since Chase's blood type will change, I wondered about the blood and platelet transfusions he will receive.  Which type? I asked a doctor this morning (Friday).  She said the people who take care of all the blood products will have to continuously take samples from Chase to ensure he won't have a reaction.  If a reaction is a risk, they will have to clean the blood, but I'm not sure what that process is or what they clean. It sounds like there will be a transition period going from A- to B+ until his new marrow has "taken root" and is producing new cells.  

And if you are really into getting more details, here's an image that breaks down the types of white blood cells the bone marrow produces. I can make sense of part of it only because some are listed on his daily blood count reports.  The ones I really watch out for that lets us know his "counts" are recovering are the neutrophils, the absolute neutrophil count (ANC).  I also watch his platelet and red blood cell (RBC) recovery, too, but I tend to focus on the ANC.

Back to Friday, February 11th

Chase's chemo regimen this time only lasted from Friday to Tuesday.  He received two different chemo treatments, both of which weren't as harsh as the two they gave in April.  Including this regimen to destroy his marrow, this was Chase's 10th round of chemo.  Between that, the side effects he suffered last transplant, and potential side effects from the new marrow, they opted to go with a less intensive preparative regiment.  The only other chemo he will receive will be an extremely low-dose one that targets mature cells from the donor's marrow.  The purpose is to kill them so they don't "attack" Chase's body tissue until the new marrow starts growing.

As far as food goes, he was able to eat and remained in great spirits through Monday.  Tuesday, after finishing the last dose of chemo, he started getting sick and his mood started to fall a bit.  I think with the transplant drawing closer, he began to think about it more and started to grow nervous.  There was a certain built-in comfort with William as his donor, but when you don't know anything about your donor or what could happen, it's definitely an unsettling feeling.  We have been doing a lot of praying though and have had the support of my mom's pastor, Debbie, the Aflac Chaplain who we've also known for going on two years, and all of you!

Since the Transplant

One of the nastier side effects of the harsher chemo is a condition called mucositis. He had an extremely bad case of it during the last transplant and it is already developing again.  However, it does not seem to be as severe.  If you want a detailed look at what this is, you can check out this website. Right now, he doesn't have any mouth sores, but the thick drainage is making him nauseous.  They started him on a nausea pump to combat it, and he has a button he can press if he feels he needs a boost.

Around 5:30 Friday (the 18th) evening he got an NG (nasogastric) tube inserted for nutrition. (The white patch on his face in the picture further down is securing the tube in place.) I was really nervous about him getting this, but Rebecca gave him some Versed (a sedation drug) and it was over before I knew it.  He drank water while she "fed" it to him to help it go down more easily.  He did great!   Thirty minutes later he asked when we put the tube in.  He didn't even remember.  Thank you Versed!! 

He was so nauseous during his last transplant that he could not keep the tube down and it had to be put back in (via the nose) four times before the doctors opted to use IV nutrition instead.  The NG tube is preferable since it keeps the digestive system working though.  When I spoke to the oncology team back in November, attacking his nausea earlier and hopefully finding a way for him to keep the NG tube were two areas that I hoped we could combat and conquer this go around. So far, so good!

Sleepy Chase in his recliner

Pain typically goes hand-in-hand with the mucositis, so most every bone marrow transplant patient ends up with a morphine pump as a result.  When I first started writing this, I thought he would be able to wait until Friday to start, but his throat is already becoming raw so they gave it to him last night.  

As bad as being on morphine may sound, I discovered in the past few months that it has clouded Chase's recollection of his first transplant.  I'm extremely grateful for that, too!! It's too bad they don't have something similar they can offer the parents.  It has most definitely helped me going into this transplant knowing the morphine will not only help his pain but also cloud his memories.

We can't say for sure what he can expect from here on out, but I have learned not to compare him to the experiences of other patients or even to his last transplant.  Each child and also transplant is different, but I'm also realistic about the side effects from the chemo and the donor's marrow.  Just as in an organ transplant, the body can reject it. However, in a bone marrow transplant the new marrow can "reject" the recipient.  It's called Graft Versus Host Disease (GVHD) and typically begins once the new marrow has grafted ("taken root") and is producing new cells.  

As I mentioned earlier, he will receive a low-dose chemo now to kill the new mature cells plus an IV medication to suppress the new immune system to combat GVHD.  Although it is a serious condition, which the doctors monitor closely, they actually want to see a little GVHD because it can have an anti-leukemia effect. Should Chase's body produce leukemia cells again, ideally the new marrow would attack them.

So for now, we are taking things one day at a time until we can move on to the next phase - the Ronald McDonald House.  I fully expect him to be here for another 30+ days, but as I said before, each child's experience is different.  Once again, thank you so, SO much for all of the prayers and support.  I look forward to the day when I can be in the position to help others.