Ok, I’ll fully disclose that I have hardly logged into this site all week. Nothing personal–I am just burned out and, until today, didn’t feel like talking about it or writing about it. Additionally, I was waiting to hear back on some engraftment study results before I did another post, so I could share where Reece’s blood progress is at. Apparently, “about three days” means closer to one week, with regard to hearing back on test results when you’re in a hospital.
Anyway, a couple of things have happened this week in regard to testing Reece’s blood. Before I go any farther, let me explain a little something about the hierarchy of importance in these tests (these are my own terms). Getting results from the blood is one thing, but the Big Kahuna of all test results lie in the bone marrow. To put it in perspective, during the diagnostic time period last fall, Reece’s blood showed very few abnormalities or “dysplasia.” It was the bone marrow that revealed the monosomy 7 and other dysplastic features that landed him with the MDS diagnosis. In fact, the genetic testing for blood could have been totally normal, while his marrow would have revealed something genetically different. Keep that in mind as I am discussing this next part.
On Monday, Reece’s blood was drawn to do an engraftment study. This tells us what the makeup of Reece’s blood is between his old blood, Cord A, and Cord B. Today, we were told that the study revealed nearly a 50/50 split between the cords with only 1% coming back as Reece’s old blood. Praise God!!! The 1% that remains of his old blood is “negligible” and not a concern by the docs. I asked the doctor, “So this is good, right?” His response was, “It’s perfect.” He was wearing a mask at the time, but he had a huge smile underneath. It was great to hear and see! A lot of times one cord will “win out” over the other and take over the blood completely. This may or may not still happen. I went on to ask the doctor if he would be at a higher risk for GVHD if both bloods were always present and he said it would actually mean a lower chance. I don’t get that one, but ok. Perhaps it means that the two bloods will hang out with each other and leave Reece’s body alone? No idea and don’t care as long as everything is doing what it is supposed to do. The doctor also made a comment that indicated he would expect the marrow engraftment study to be consistent with the blood engraftment study. So allow me to back up a bit…
On Wednesday, Reece had a bone marrow biopsy. They will be looking for the presence of monosomy 7, which is why Reece’s blood is dysplastic in the first place.* Any presence of monosomy 7 is obviously a bad sign. They will also do an engraftment study, similar to the one done on the blood. We don’t expect the results to come back until next week. If I sound a bit reserved on the results we learned today from the blood it is because it feels like we have been here before. When we were in the diagnostic process, we had MANY blood tests done. Even the preliminary appearance of the marrow looked normal. It was only under this longer scoping process with the marrow that anything was found. Until that comes back clear, I feel pretty reserved on the whole deal.
Every week we have been here I have thought, “This has been the hardest week so far.” This week is no exception. On paper and clinically, Reece has improved. His fevers are down, his oxygen is back to normal, his counts are coming in. But he has been vomiting quite a bit. He has shown improvement over the week, but as of the last 36 hours, the vomiting has returned. This whole ordeal is like a tricky puzzle. So many symptoms overlap, so the vomiting could be from his gut not yet wanting to process food and liquids, from stress, from medications, from withdrawal from medications…it is very confusing. Long story short, if they continue to taper down the medications and Reece’s nausea gets worse as a result, they will be doing a scope of the upper gut on Monday to see if he has GVHD in that area. He is improving, but it is just one thing after another. And he has hardly any energy at all. These past few days he has wanted to nothing but sleep. Again–why is this? Is it because he is fighting something off, he is making up for restless sleep over the past few weeks, he is overly medicated? While we have a lot to be thankful for–and we are thankful–I feel depleted on just about every level. One of the worst parts of this is knowing that my crazy-energetic 4-year-old wants to sleep all day, versus play and do fun things. He can be out of his room, but it takes a lot of coaxing to get him there. It just isn’t right and when I say, “I want my kid back,” that is what I am referring to. He is doing better, but he has a long way to go. I know this is a process, but for the last 36 days, he has been in this room, battling it out. Enough–I want this to be done and I want him to get back to being a kid. It is a desperate feeling.
- Reece’s blood engraftment study results
- Subsiding of fevers
Prayer Requests for Reece:
- Nausea to subside; no GVHD
- Clear marrow engraftment study results and NO monosomy 7
- Ability to get off of medications; protection from withdrawal
- Protection from infections
- Return in energy and desire to do normal things
Prayer Requests for Us:
- Trust in God
- Tolerance for this process
- Ability to meet Reece’s needs
Thanks for your continued support and prayers and for lending an ear.
*A brief refresher for you. “Myelodysplastic” literally means abnormal bone marrow. MDS is either considered primary, where there is no obvious cause or secondary, where there is an obvious cause. Secondary MDS would be a result of chemotherapy or having Down Syndrome, among other reasons. Reece has primary MDS as a result of having the genetic abnormality of missing one chromosome 7. They have no idea why or when this happened, thus there is no obvious cause to it. The missing chromosome made his blood do odd things, most noticeably it enlarged his red blood cells. Eventually, it would have caused different parts of his blood to go haywire.