As we finalize our decision with the doctors over the next week, I thought I would share a little background about why radiation is part of Brynna’s protocol, because it is NOT a standard part of leukemia treatment. I tend to ramble, so I will do my best to keep it concise and non-medical (not that I know many medical terms, but still). And also, because I am in no way a medical professional, I just write to the best of my knowledge on these things. 🙂

So first, a quick background on the leukemia diagnosis. There are 3 main parts to a leukemia diagnosis:

1. Type of leukemia (ALL or AML)
2. Risk factors of leukemia (determining which risk protocol the child will follow for chemo types and doses)
   1. Age at diagnosis (below 1 and over 10 = high risk)
   2. White blood cell count at diagnosis (anything over 50,000 = high risk)
   3. Genetic markers of the leukemia (this has nothing to do with a child’s genetics, just the actual genetics of their particular leukemia → If there ARE genetic markers, this shoots them up to very high risk)
   4. Remission on Day 29 (not in remission = high/very high risk)
3. CNS Disease (CNS = central nervous system || This is tested on diagnosis day, but Day 2 for Brynna)
   1. CNS 1 = No leukemia cells in the spinal fluid
   2. CNS 2 = Some leukemia cells in the spinal fluid
   3. CNS 3 = A TON of leukemia cells in the spinal fluid and/or other factors

And Brynna’s diagnosis factors:

1. ALL (Acute Lymphoblastic Leukemia)
2. Very high risk due to…
   1. White blood cell count at diagnosis = 600,000 (CRAZY HIGH!!)
   2. Genetic marker called MLL = this means that she could have BOTH kinds of leukemia, and/or relapse with another type of leukemia
   3. CNS Disease
      1. Classified as CNS3, but not as a normal diagnosis comes through…I explain below

Not that long ago, all leukemia patients were treated with radiation. As medicine, technology, and research has improved, they have learned that the vast majority of leukemia patients do not need radiation, which is huge because radiation is scary and has some horribly crazy and hard long term side effects. It is generally for the children that have CNS3 disease at the time of diagnosis, because this means there is the possibility (probability?) of leukemia cells floating around in the central nervous system and brain, and “normal” chemo doesn’t really break the brain barrier enough. A lot of studies have shown that radiation does lower the chance of relapse in the CNS, for these CNS3 kids.

So here’s where it gets tricky with Brynna. When they first tested her CNS (on Day 2 of that first month), she only had a few leukemia cells in her spinal fluid, which they saw as a HUGE deal, especially considering the amount of leukemia cells filling the rest of her body (her blood was basically sludge due to the amount of leukemia cells, and many of her internal organs were badly damaged as well). She was diagnosed as CNS2a (the lowest she could be while showing leukemia cells in her CNS).

However, a day or so later, one of the oncologists wanted to check her retinas for a bleed. How she thought of this, I don’t really know, except God. The Ophthalmologist found a small bleed in one of her retinas, and it was because of THIS bleed, that shot her up to a CNS3c diagnosis. Huge blow. I can still picture the bleed. She was so out of it (drug induced) those first couple of weeks, and so the Ophthalmologist was able to dilate her eyes and then take a picture of the bleed with his phone, which he then showed me. It was so tiny, but also, definitely a bleed. And it is this bleed that is the reason radiation is part of her protocol…because with the amount of leukemia cells she had in her body at the time of diagnosis, the chances of even just 1 getting into that bleed, are pretty high. Add in the genetic marker of MLL, and that’s what the oncologists keep coming back to. In short – that bleed just signaled to them that there was a good probability of leukemia cells in her brain, it isn’t really anything to do with her eye.

Now, the main reason that radiation is SUCH a gray area for Brynna, is due to her age. Anyone younger than 7 can (and will) suffer big side effects from radiation. With chemo, there are a TON of side effects, some maybe, some possible, some likely, but not really much for certain (although ⅔ of all children receiving chemo will suffer some form of long term side effects). With radiation, the side effects are guaranteed. And those include IQ, growth hormones, potential for brain tumors 20 years down the road, etc. Without radiation, she is technically/statistically at higher risk of relapse. Relapse is scary, especially with the MLL marker (she could relapse with AML). Relapsed cancer is harder to get into remission, and she would be headed for a bone marrow transplant if she relapses. If she relapsed into her bone marrow, she most likely would NOT need radiation. If she relapsed into her CNS, the amount of radiation she would most likely need would be nearly double what she would be getting at this stage.

But also consider this…they were prepping Brynna (and us) for bone marrow transplant because the statistics showed that her chance of being in remission on day 29 (with all of her very high risk factors), were incredibly slim. Remission is classified as there being 0.01% of blasts (leukemia cells) in the bone marrow on Day 29. Y’all. If you remember, Brynna had 0. ZERO (to the best of their technology). God. Just God.

So, that is the background. That is what we’ve been praying over. Both options require huge amounts of faith. And it goes back to what I blogged last week…ultimately, if we are actively seeking God, this is NOT our decision, it is His. We are at peace with where we feel Him leading us. It doesn’t mean we don’t struggle with fear and uncertainty, with anxiety and worry…but that’s something we are working to continually give back to God. I’m so weepy lately. More than I normally am. I’m spent, emotionally, physically, spiritually, mentally. The agony of the last 11 months, the weight of this decision, the extreme lack of sleep, everything is catching up. But God. He keeps giving us little glimpses into what “normal” can look like. Brynna’s chattiness has amped up in the last couple of weeks, and watching her and Wyatt slide back into what they had a year ago, makes my heart burst, and she is really settling in to her role as big sister to Cole. Her creativity is really starting to come through. Her physical abilities are probably still behind a normal (almost) 3 year old, but goodness, she is getting stronger every day. Spring is coming, and with that, a start of our new normal.