We are finally in the pluses! We are now counting the days POST-transplant! This is basically a new phase of transplant. The high intensity chemo is complete and Xavier has received his brothers cells. The “worries”or things we look for are now different then when Xavier was receiving his 8 days of chemo.
I thought I would take the opportunity to make this more of an informational blog entry. I definitely understand that a bone marrow transplant is not something a lot of people know the fine details of, or even the broad details of the matter. I definitely wouldn’t expect that! I have been researching and learning this for over a year now and every day I learn something new. Just because Xavier has received his brothers cells and it was a beautiful and important step for us, we sill are considered early on in the process. You don’t wake up the day after transplant and boom, you are better. In fact, you will only feel worse. For a while. #cancersucks!
With Xavier’s blood counts dropping rapidly (red blood cells, white blood cells, platelets, neutrophils, ANC… virtually everything) we have a huge risk of infection. Actually his ANC (ability to fight infection) is already at zero. The doctors automatically put him on a broad spectrum antibiotic to protect him as best they can. It is our job to keep him safe from any and ALL potential germs. He has no immune system to fight things off himself. He will receive these antibiotics until his brothers cells start to engraft and his counts start to rise. His immune system is not expected to reach full working mode until about the one year mark. It should be about 50 percent when we leave the hospital.
Xavier will most likely need platelet and blood transfusions throughout the next few weeks and possibly beyond. They are letting his levels get down to a certain point and then once it reaches that threshold, they give him a transfusion. They monitor his numbers extremely closely. There is absolutely no room for error.
Due to all of the high intensity chemotherapy Xavier has received, there is a high possibility of mucositis which is the painful inflammation and ulceration of the mucous membranes lining the mouth and digestive tract. Mucositis is a common and often debilitating complication for about 85 percent of bone marrow transplant patients. Fingers crossed we are apart of the 15 percent who steers clear of the pain and discomfort. So far, so good but they continue to mentally prepare us for the possibility. Again, out fingers are crossed!
Another important thing we start to think about is the potential for Graft vs Host Disease. Very simply put, it is when the white blood cells in the graft recognize the recipient (the host) as “foreign.” The transplanted immune cells then attack the host’s body cells.
While this is a very common complication for donor bone marrow transplants, the chances of getting it are lower when using a matched sibling donor. Xavier has about a 35 percent chance of getting this. They believe if he does get GVHD, they are hopeful that it would be mild to moderate. A little bit of GVHD is considered ok because the graft will hopefully attack any lingering cancer cells that could be hiding in the marrow. So while we definitely don’t want GVHD, a tiny bit would be ok. I believe something like this could show up as early as about a week after transplant.
While GVHD continues to still be somewhat of a mystery to doctors, there are fortunately some drugs that can help prevent severe GVHD. We started one of them the day before transplant which is currently in the form of a continuous IV drip and then another we get at day 1, 3, 7 and 11. Anything we can do to cut down on the risks of this nasty disease we are totally on board. This is as far as I want to take this conversation with GVHD because there is no need to dwell on something that we quite possibly will not even be dealing with. I just think it’s important to note we are doing all we can to avoid it.
Xavier’s central line got a good tug at his chest the other day. The central line is the small, flexible tube inserted into a large vein near his heart. This is what serves as the rout for medications, fluids, and to obtain blood samples. The tug almost broke the stitch in his chest. It was very painful for him and I felt terrible. I was scared that the line may have moved out of position inside his chest. They checked it by drawing blood and thankfully it still works fine. The nurse had to put another dressing on the site which is a very uncomfortable process. It involves taking a very sticky bandaid the size of an adult hand off his little chest. But as no surprise, he new it had to be done and he did great.
As a whole, things have been going well. Some days are better than others but we keep the positivity up for sure. The doctors think he’s looking good. His liver enzymes were high the last couple of days so they are changing up one of the anti-viral antibiotics as they believe this may be to blame. We should hopefully see these levels drop to normal range in the next couple days.
To all of you writing cards or sending pictures to Xavier, thank you! He loves it and has been posting them around his room. He even got a package from the Seahawks with lots of fun Seahawks stuff in it! He was very excited!
Xavier’s big brother W went back to school and was able to celebrate the last week with his friends. He would go year round if he could!! With W now done with his bone marrow donation  and no longer in “isolation”,  for us this means we will have to make certain W is not showing any signs of being sick before he can be around any of us. I miss being with W so much! We all do! I know however that we are here doing everything in our power to get Xavier better so our little guys can play together soon!