Oh my goodness, I have SO much to update y’all on, I’m not even sure where to start! I guess I’ll start with the best news, that her 2nd MRD test (the bone marrow test) came back completely negative, still zero cancer cells detected. HUGE PRAISE!!! The doctors told us that there hadn’t been anything along the way to show or hint otherwise, but they wanted to do the test again just because she is so high risk and her white blood cell count was SO high at diagnosis…and especially since we had nearly a 4 week delay (that means 4 weeks without chemo), they wanted to ensure nothing had crept back in. So, so, so thankful!!! SIDE NOTE: I know that this gets SUPER confusing, as to why she still has treatment when there is no detectable cancer in her body. I don’t quite understand it all either, but the very short explanation is that, despite the crazy amazing technology and science they have right now, there still may be even just 1 cell lingering in her body somewhere. I believe at least 90% of leukemia patients would relapse incredibly quickly without continued treatment. So, even though no cancer is detectable (which is AMAZING!!), relapse would pretty much be inevitable without the continued treatment.

The other huge praise that came out of last week was the meeting with the endocrinologists (the adrenal gland doctors). If you remember back at the end of June, Brynna was hospitalized with hypoglycemia (an insanely low blood sugar). Since then, her blood sugar has bounced back and forth, but as long as she was eating and drinking, she was pretty steady. We noticed huge drops again on the handful of times she had to fast for procedures, so it was these incidents, primarily, that led to them taking a closer look.

It’s a lot to explain so I’ll just give the cliff note version as much as possible here. Before they ran the tests, they assumed that her adrenal glands weren’t functioning at a normal level, and that Brynna was going to have to be put on a maintenance dose of steroids for the unforeseeable future, to ensure that her body was making what it needed to fight viruses and such. That option sounded awful to us because who wants to give their 2 year old steroids for weeks or months on end? We’re already pumping her full of so much poison and nastiness, it hurt my heart thinking we were going to have to do more.

But then God. They ran some tests (after making her fast AGAIN poor girl), and everything came back PERFECT y’all. Perfect. Her adrenal glands are functioning completely normally, producing everything they are supposed to, and they said she shouldn’t need any more steroids. HUGE HUGE HUGE PRAISE!!!! We will have to continue checking her blood sugar levels 3 times a day (ugh, her poor fingers) for the next week, to ensure that remains level. One of the assumptions early on, was that the oral chemo drug she was taking, caused the drop in blood sugar. She ended the cycle of that drug at the beginning of July, but now it’s back in this cycle, daily for 8 weeks (it’s also the main chemo drug once we hit maintenance, so it’s not going anywhere). Her levels have stayed steady at the hospital, but she’s also been on fluids, so we’re just supposed to check once we get home and see how her body responds to that chemo.

As far as her actual in patient stay last week, it went SO incredibly well. Your prayers were answered BIG TIME. The first day (Tuesday) she wasn’t allowed to eat from midnight on, and her procedure kept getting pushed back…yet she was a delight. Truly. There is no other reason other than you guys covering her in prayer that day! It was a miracle! We started off the morning in clinic where they accessed her port and got the chemo ready. Once the anesthesiologists were ready for us, we headed over to the hospital, where Brynna had her lumbar puncture (with chemo injected into her spinal fluid) and her bone marrow biopsy. Once she was out of that, we were taken up to her room, and they kept an eye on the pH level (and an assortment of other things I don’t really understand) of her body until it was where they needed it for the chemo. They started the chemo at 9:20pm Tuesday night, and it was a 24 hour IV chemo. The next morning they checked the level of the chemo in her body and it was at 69 (not exactly sure what that number signifies, but they said it was a totally normal level for that point in time). This chemo is such a high dose, they need to keep the levels of her body steady, and the majority of the chemo has to be completely out of the body before discharge…there has to be less than 0.1 of the chemo drug. At hour 42 (so 18 hours after finishing chemo), she was given a dose of a rescue drug, to help protect some vital organs that the chemo could attack, like her brain and kidneys (terrifying). They also checked the level of chemo in her body at that point, and told us that they were looking for less than 10 at that point…when it came back at 0.69 we were thrilled! Thursday night it was 0.31, and Friday afternoon it hit 0.13…so very close, but still not quite there. By Saturday morning, she was good to go at 0.06, and it has been SO nice having her home!

This morning, Wyatt was asking where we’re going and what we’re doing today. I told him that we were just hanging out at home, and he seemed bummed. I thought back on the past few weeks and realized it’s been 3 weeks since we’ve had a day just at home…no clinic visits, no appointments, no scheduled things…and we have several of those days this week, so I’m thankful for that! Just some quiet “normalcy”. 🙂 We go into clinic on Wednesday to check her labs since her hemoglobin is trending down again (prayer that she doesn’t need a blood transfusion this week would be awesome!!), but other than that, we have no plans.

As far as her hospital stay, it was by far the best one we’ve had (also the first scheduled one, meaning we weren’t there for scary reasons). Her sleep was great (especially for the hospital), her demeanor was joyful and happy, she started to socialize with some of the nurses and doctors, we did many, many wagon ride laps, she pushed her baby doll, played in the playroom, and just was a joy. It was another huge answer to prayer!! I had worried how I would pass the time with her day in and day out, yet it was never a problem! We didn’t even get to a handful of the things I had planned out, which is nice, considering we have 3 more of these stays in the upcoming weeks.

Going forward, our next hospital stay will start next Thursday the 23rd, and then we’ll have 2 more in September. She also will receive oral chemo every day at home, and it’s something that is vitally important to give at the exact same time every single day. Doable, but a little worrisome thinking about how much they stress the importance of that…but we’ll do it!!!

So, all in all, this past week was just answered prayer after answered prayer. Thank you guys so, so, so incredibly much for continuing to lift up Brynna, and lift us up as well. We truly see and feel your prayers on a daily (sometimes minute by minute) basis. You will never know how much we need them and appreciate them, but thank you.