Whew, it’s been a while since I was able to blog Whew, it’s been a while since I was able to blog an update! Finding any time is next to impossible lately, but I’m not complaining…having Brynna home has been INCREDIBLE! Every day she is stronger, and we see more and more of her old personality shining through…we can’t even tell you how much that encourages us and warms our hearts! After 29 days in a hospital bed, her muscles have atrophied like crazy, yet she’s already just about walking on her own, it’s incredible. She is one determined little gal, and I know that will help her so, so much in this fight!

So, this is probably going to be a really long post, as I try to update as much as I can about the past week, and give an overview of where we’re headed. Tomorrow we head in to have her port put in (hooray!! This will be under her skin in her chest, so she can finally get rid of the line in her arm), and then we’ll start her next round of chemo.

Brynna is the first person in our family to have cancer, and so our knowledge of the disease was next to nothing prior to this, and at the same time, still is as every type of cancer is different. I’ve heard the term “remission” and always thought that meant the cancer was gone, the person was healed…and that’s partially correct, and terribly wrong at the same time. I’m still not exactly sure what the term means, but in Brynna’s case, her Day 28 testing (they call it MRD testing) shows 0 cancer cells, and no sign of the genetic marker (MLL cancer cells, the OTHER type of leukemia than the one she has), which is TRULY a miracle! (We’ll get back to that in a minute). However, if they were to stop treatment right now, she would relapse, and probably relapse quickly. Leukemia cells are smart, tricky, unstable, FAST moving cells. I still don’t quite understand it all, but it’s how it works.

NOTE: MRD stands for Minimal Residual Disease…if you are at curious about this, Wikipedia offers a good explanation!

To make matters even crazier, I’ve explained in the past how Brynna has 2 of the 4 high risk factors going into this whole process. Despite the fact that she is technically in remission, she is actually now classified as very high risk. Crazy and disheartening, right!? It all stems from that genetic marker (where she could possibly have BOTH kinds of leukemia in her body) that will be with her throughout the whole journey. So, what does this all mean? We’re still trying to wrap our heads around all the information we’ve been given, but ultimately, being on the “very high risk” path basically means that there will be a more intense cocktail of chemo drugs for the next couple of months, and her treatment will last 2-3 months longer than the treatment of someone at a normal risk level would. So here’s a quick breakdown…

INDUCTION || Month 1 – This is the part that we just finished. This is the most intense portion of the treatment (generally), and the MRD testing (Day 28) was a crucial point to show whether or not the cells were responding well to the chemo drugs given. In Brynna’s case, her body responded beautifully and miraculously!

CONSOLIDATION || Months 2-3 – This is the part we are just starting. There are a lot of drugs we give at home, and *hopefully* only one trip to clinic a week for treatment. This is still a very intense couple of months, and in Brynna’s case, they will do another round of MRD testing at the end of this phase, to ensure that the cancer cells are still responding to treatment. Apparently the cells are incredibly smart and grow used to the drugs very quickly, so a variety of new drugs have to be introduced to keep the cancer cells at bay. If her MRD testing is positive at the end of consolidation, things may proceed differently, but we are continuing to pray that God will continue his good work in her body, and that the second round of MRD testing will be negative.

MAINTENANCE || 2 Years – I think there are different phases within maintenance, with the first few months still being pretty intense (especially with Brynna’s risk factors), but then it will settle down and trips to clinic may only be monthly instead of weekly. We’ll know a whole lot more in a couple of months.

In regards to all her treatment, there are still some really scary things we’re facing…

• Radiation – This one TERRIFIES me. We have a book on childhood leukemia, and one day I randomly popped it open and read a paragraph…it happened to be about radiation, and how cranial radiation in a young child can permanently affect/damage/destroy their adult teeth. I stopped reading pretty quickly when I realized what I was doing, but that has stuck with me. She has a small bleed in one of her retinas, and because of this, we are facing radiation. We don’t know when yet, and I’m still praying that, in the interim, some new therapy is found or new solution is discovered and we can skip this all together. We may be looking at radiation at the start of maintenance (so in a few months), although our doctor said they are starting to do research to see if it can be done at the end of maintenance (so in 2 years) instead, when Brynna will be older. The older she is, the better, but it all comes down to risk and benefits.
• Bone Marrow Transplant – Right now, this one is NOT on the table, praise the Lord!! If her MRD results had come back positive, we probably would have been looking at bone marrow transplant pretty immediately. However, this is not completely off the table. If her genetic marker ever rears its ugly head, we may have to go this route. We did get the news that Wyatt IS a match for her, which is both wonderful and terrifying at the same time. I pray we don’t have to go this route, for so many reasons, but am also so, so thankful that she has a sibling match, should it ever be needed.

All in all, we are rejoicing the true MIRACLE that her Day 28 tests showed. I don’t know if I can truly express how miraculous this was. Just think about this…when she was admitted to the hospital, she had one of (if not the) highest white blood cell counts they’ve ever seen. Her blood was literally sludge as at least 98% of it was leukemic cells. Her kidneys were twice their normal size, filled with the leukemia, as were many of her other internal organs. They did not know if she would survive that first night. Her genetic marker is a truly scary one, and can cause big trouble. Yet her MRD results at the end of induction showed 0 leukemia cells. 0.0000000000%. This is HUGE!! They consider 0.01% remission, and she didn’t even have that, she literally had 0. Brynna is a miracle you guys. God is at work, and doing some HUGE things! Yesterday was a little scary, just being reminded of everything we are still facing, and starting to think about some of the long term effects of this process, but we are trusting God each step of the way, and know that He is walking with us through this.