So now that I’ve shared Brynna’s story, I wanted to blog an update on the last couple of weeks. I’m almost done with Brynna’s website, so hopefully the next update will come over there…
After d-day, things moved FAST. When she was admitted, her white blood cell count was 600,000 (“normal” is between 5,000-10,000). We were told that this was one of the highest (if not the highest) they had ever seen. Her blood was literally sludge when she was admitted. Her kidneys were nearly double the size they should be, and her liver and spleen were enlarged as well. They needed to get her white blood cell count down, and do it FAST. Chemo will do that, but the wait would have been too long. There are 2 types of leukemia, both of which are treated incredibly differently, so we had to wait until they had the results of which leukemia she had, before starting chemo.
So they started a process called plasmapheresis, where (from my crazy little medical knowledge) they hook her up to a machine and literally pull the blood out of her body, clean it, and put it back in. This also (for obvious reasons) included a blood transfusion. They also hooked her up to dialysis to help her kidneys and body get all of the broken down white blood cells OUT of her body. That first day, the machines, the tubes, the needles…oh man, it was overwhelming. They ran the platelet machine early in the morning. When it was done, her white blood cell count had dropped to 182,000. I was watching our oncologist’s face when they stated these numbers and her jaw dropped, she looked at the numbers again, and then got a huge smile on her face and gave me a thumbs up sign (there’s a reason I call her our BFF doctor). Obviously, her cell count was still absurdly high, but this was HUGE.
Later that afternoon we got the results that she had ALL (acute lymphoblastic leukemia). To us, this was “good” news (it’s interesting how your sense of happy changes drastically after something like this). From what had been explained to me, this was an “easier” leukemia to fight, and it’s the more common type, especially among children. It was a longer battle, but didn’t have to be treated quite as aggressively from the get-go. Our oncologist sat down with us for about an hour, explaining the next 28 days. SOOOO much depends on the results of day 28, that apparently there is no point in really talking about what things will look like after that.
The other results we were waiting for were the genetics of the leukemia cells…not Brynna’s genetics, but the actual genetics of the cells. There are certain mutations that the cells can take that can make things higher risk. She tested negative for one that they thought was a good possibility she would have (praise!), but then positive for one that was devastating to us. I won’t go into a ton of detail, but this is one that could bring really aggressive treatments in, such as radiation and bone marrow transplant. We are praying desperately against either one!!
As I’ve mentioned before, everything depends on Day 28, and if she is in remission. If she is in remission on day 28, this means that the cancer cells have responded really well to her treatment. If she is not in remission, this just means things have to be dealt with more aggressively. So, we wait. On day 28, they will test her blood, bone marrow, and even bone fragment to see if any leukemia cells are hiding. They are sneaky little buggers! We will get preliminary results the next day, with full results a day or 2 after that.
Day 28 = May 7th
After an extremely eventful first week, last week was a bit more subdued. She got a little better each day, even though it sometimes felt like 2 steps forward, one step back. But then the weekend hit…and it hit hard. Without going into a ton of detail so I don’t bore you, Brynna was diagnosed yesterday with delirium, which is definitely not uncommon for anyone who has spent 2+ weeks in the ICU. Add in the fact that she is barely sleeping, she has so many drugs coursing through her tiny body, she has NO idea what is going on, and everything else, it makes sense. She was started on some meds to help with that, and we noticed a huge difference immediately.
Yesterday was a big day for her! We finally got her outside (there is a nice rooftop garden/playground right outside her PICU room), and she wasn’t huge on the idea of going out, but once there we could tell it helped. She went out 2x’s! Ben and I were able to give her a shower last night, read with her, and sing with her, and you guys. SHE SLEPT FOR 12+ hours last night!!!!! I don’t know the last time she slept that long. It’s been months. PRAISE THE LORD!!!!
And today…TODAY WE MOVED OUT OF PICU!!!!!! We have our own tiny little room on the normal pediatric wing, overlooking the train tracks and train station (much to the delight of Wyatt). I don’t know when we’ll get to go home, but this is a HUGE HUGE step in the right direction!! She’s almost completely off of fluids and only has oral meds for the most part. It’s been a good past couple of days, but we’re also experiencing 2 steps forward, 1 step back.
After being moved out of the PICU today, she’s been very tired and sluggish, and then she spiked a temp (this happened over the weekend too, and I mention it in the tidbits below). So, she’s being put on antibiotics and blood cultures were drawn to see if she has an infection at all, which is always scary with counts as low as hers. So, that’s where she currently is. We’re making baby steps in the right direction. And these 2 boys have been wonderful!
A few other tidbits –
- Leukemia cells can hide in SO many places. If even 1 cell is left, it will cause relapse. They found a small number of cells in her spinal fluid. This was not surprising, considering the absurd amount of white blood cells in her body, but it was a small miracle that the amount was so small! We were thankful for that!
- She has a tiny bit of bleeding in one of her retinas. This could be from the cancer, it could be just a small blood clot. Either way, they are treating it as leukemia cells because even with the smallest bleed, one white blood cell could have crept in. This was hard news because it meant a more aggressive treatment, but we would rather take an aggressive treatment now than have relapse later on! (Also, as a side note, this doesn’t affect her sight at all. Given mine and Ben’s eyesight, she’s destined to bad eyes someday, but it will have nothing to do with the cancer).
- Her kidneys are slowly shrinking back down, and her body is trying really hard to regulate everything and stay balanced. And this weekend we finally saw some really big progress in that, so that’s a huge praise!!
- She’s finally starting to eat and drink more, and that’s HUGE!
- She spiked a fever over the weekend, and fevers in kiddos with such low white blood cell counts as Brynna are always cause for concern. They immediately put her on antibiotics and drew some blood cultures to see if there was an infection. There was concern over one bacteria they found, but they are pretty positive it was a contaminant because it only popped up in one tube, and they redrew the cultures, and nothing else has shown itself in the others. However, Infection Diseases is keeping an eye on it.
- That she does not have an infection, and that her fever completely disappears!!
- That her kidneys continue healing and she gets off her fluids completely
- Day 28. I just can’t stop thinking about that, and every time I picture sitting down and getting the results, I get that sick, queasy, want to throw-up feeling in my stomach. The wait is so hard, but I know God is with us every step of the way. But oh Lord, how we pray for remission!!!
- That her delirium will die down and that we will see more and more of “Brynna” coming out.
- That we will get to go home SO soon!
Again, I cannot say thank you enough for EVERYTHING!!! I know that we haven’t been able to respond to every text, phone call, message, and comment, but please know how special they all are to us! We read every single one, and are doing our best to respond as time allows. We love y’all!! Thank you for journeying with us.