Well the last few weeks have been an emotional roller coaster. I have discovered that my body does not react well to stress and anxiety. I had been so happy when Nadia finally registered on the WBC chart then reminded myself that these numbers would fluctuate and this is normal. But seeing as though I am a future “helicopter parent”, I of course hoped they would move along quickly once they registered, and in the majority of transplant patients they do. If I could have enrolled Nadia into the WBC/ANC extra tutorage course I would have or bought that book on “How to increase your child’s WBC/ANC levels through finger painting”. But they just sorta hung there, and when they went up and dropped down, I was crushed. Thor of course always said ‘at least they are not zero’. Thank-god he has a great way of looking at things sometimes!
Coming up to Nadia’s day +35, one of our doctors came into us and told us that this week was ‘crunch week’ (last week), as we were coming up to day 40. As soon the doctors said this I immediately felt weak, sick, hot and anxious. I actually had to sit down while she talked for fear I was going to faint (never thought I was this type of person, but when your kid is faced with major health issues you realize a lot of things about yourself). The doctor explained that Nadia’s numbers weren’t moving like they expected, and this could indicate that the transplant may have not worked. I won’t go into details about it, as I don’t I really want to relive that feeling. Anyhow, I spent the next 3 nights/days, feeling sick to my stomach, no appetite, and no sleep, oh right and sobbing my head off when no one was looking.
The ‘what if’s’ and the overwhelming feeling of helplessness was palpable, they are still there but in the background and a lot quieter, I don’t expect them to go away anytime soon, but at least they have died down (wow I sound a bit crazy, as I read this back to myself). The thing is when you have a child or someone that is close to you in a situation like Nadia’s, and really there is literally nothing you can do to help them, it is the worst feeling you can feel. Last week was hard, probably the hardest week of my life, I woke up every morning with anxiety over Nadia’s blood work numbers, would they go up or would they go down?
In most cases with BMT’s the first numbers that start to move are the WBC, then the ANC, then hemoglobin and platelets. So with cord blood, it can take longer for these numbers to start moving, and the reason for that is because the stem cells in cord blood are EXTREMELY immature. They don’t know what the F-bomb they are doing, just hanging out waiting for direction (this is why the are so coveted and so important to donate them if you can). If Nadia had had a match with someone’s bone marrow we probably would have seen these results sooner, because the stem cells directly from someone’s bone marrow already know what they are suppose to do and just start doing it quicker. So when they told us in the beginning it takes longer with cord blood, we didn’t really think they meant this long. Which is why this time has been stressful.
We are lucky that the BMT team is so great and supportive. They reassured me AGAIN that cords take longer, her numbers are going up, just slowly and to focus on that, it’s a marathon not a race. I also had a good chat with one of Nadia’s other doctors, who was so positive about Nadia’s platelet numbers, that she hadn’t had a platelet transfusion in 10 days, (platelets last 5-10 days in your system when you make them yourself, and less when they are transfused depending on when they were sucked outta someone ) and that number is going up, remember we have never known Nadia to have platelets at 30, they were about 7 since sept. Plus her monocyte numbers were high and in the normal range (monocytes are counted in the WBC count, and are like neutrophils, but work specifically in your bodies tissues) Also a number that was not in the normal range for Nadia since Sept. At this stage I didn’t know her monocytes were in the normal range let alone what the heck they were, so this blew me away and blew away the giant avocado pit that had been sitting in my stomach for the last week (it is now the size of a peach pit if you were wondering, progress I guess). Thankfully Nadia’s numbers have been slowly moving up, (please see Thor’s graph page for trajectory), which gives us hope that the cord blood has taken, albeit slowly. They took blood for the Chimerism test this morning, this will tell us definitively if it is the donor’s bone marrow dancing up a storm in Nadia or her old system. The test takes a few weeks to get back so more waiting. UGH!
So the last few days have been a bit crazy, they have been switching Nadia to oral meds, Magnesium, and 2 of her anti rejection drugs, still waiting to hear about the anti fungal as she is still getting that through IVy, at night. Thor and I have been learning to clean lines, squirt things into the line so it doesn’t get a clot in it, and change her dressing. This one will be the most difficult one to do on her as it currently takes 3 of us to do it, 2 to hold her down, one to change the dressing. It will be interesting. Basically they want us all trained and ready to go for when Nadia hits that magic number of 0.5 for her ANC of 3 days, they are not gonna do ‘step down’ with us, they want us OUT. Noro virus is back on the ward, so there is no access to the play room anyway. And we cannot chance it with Nadia’s extremely frail immune system. She is safer at home right now, after all, sick people go to the hospital 😉 . Keep in mind, if she gets a fever, back to the hospital we go, instantly we are hooked up to high dose antibiotics and isolated until they know what caused it. Even the sniffles could cause a VERY serious complication in Nadia, because her immune system doesn’t have the blueprint to fight off infection. They will all go to the virus/bacteria party to try and put it out, and perhaps not win and Nadia wouldn’t have enough neutrophils to keep fighting and lead to SERIOUS complications. Which is why when we get discharged, we will still be in ‘isolation’, no visitors, no playdates, no crowds, no nothing at least until day +100.
So until we reach that ANC of 0.5 please keep sending us your good vibes, prayers and hope that Nadia’s new bone marrow is having that Dance Dance Revolution party!
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Mmmm – Yop!
Mommy!
