OFFICIAL DIAGNOSIS – Acute Lymphoblastic Leukemia

Very High Risk due to the following factors:

(1) White blood cell count above 50,000 (hers was 600,000)

(2) Genetic marker of MLL

(3) CNS3 disease with leukemia cells in her spinal fluid and retina

Explanation of Her Diagnosis

On Sunday, April 8th, our world was rocked and forever changed. Our sweet 2 year old was diagnosed with leukemia. Her white blood cell count was one of the (if not the) highest they had ever seen come into VCU, at 600,000. Her blood was literally sludge. After the diagnosis and a little explanation, our doctor asked if we had any questions. I told her I just had one, and I knew it was one she couldn’t answer, but would she live?? Would our little girl survive?? Our doctor told us something that will stick with me for the rest of my life, “Your little girl is very sick, but we will do everything we can to help her.” She later told me she didn’t sleep at all that night because she was so scared for Brynna, she didn’t know if Brynna would make it through the night. She obviously did!

To read her entire story, you can visit this post and this post.

The next day the officially diagnosis of Acute Lymphoblastic Leukemia came through, and a couple of days later, it was confirmed that she had a genetic marker on her leukemia, making her high risk (her genetic marker could possibly mean that she has BOTH types of leukemia cells in her body). She also had leukemia cells in her spinal fluid and the following week, the ophthalmologists found a small bleed in her retina…both of these issues together put her at a CNS3 diagnosis (the highest and riskiest). Due to this, she will be required to receive cranial radiation (which is devastating, especially at such a young age). The radiation is planned for the first 2 weeks of Maintenance (around the beginning of March, 2019), but her team of doctors is trying to determine if it’s safe to delay it. Delaying as long as possible is best for the side effects…radiation WILL have side effects, and the younger the child, the greater the side effects. This is a HUGE prayer request!!

On top of all of this, her kidneys were severely injured as they had doubled in size as the leukemia cells infiltrated them. It took weeks for them to normalize, but, thanks to a PHENOMENAL team, they did.

Her Day 28 MRD testing came back NEGATIVE with ZERO cancer cells and no sign of her genetic marker. PRAISE THE LORD FOR OUR LITTLE MIRACLE!!!! She is still considered very high risk (and will remain in that classification throughout her whole treatment), but her body is responding extremely well to treatments and we are incredibly thankful!

Picture below…Day 2 on the left and Day 34 on the right…MIRACLE!!

Very high risk basically means that she has a very high risk of relapse, and so the chemo protocol she is on is significantly more intense than a child with standard risk. The intensity of the chemo is awful, but the goal is that, when she is done with treatment (in August, 2020), her chance of relapse will be equal to that of someone who went through the standard risk protocol. All chemo has potential short term and long term side effects, so there is obviously a greater chance of her suffering from these, just because of the crazy intensity…but we are trusting that God will walk her (and us) through any of those, just as He is with this treatment. She is, and always will be, our little miracle girl.