Before I dive into this blog post, I wanted to do a quick update on DAY 28! That’s been the HUGE prayer request since Day 1. On Friday, the doctors decided that the testing that is done on Day 28 needs to be pushed off for a couple of days. One of her counts (her absolute neutraphil count, which is the good, fighting cells that a body needs), is at 0, and it needs to be much higher than that to get an accurate result. The chemo wipes out all the bad cells, but it takes the good cells with it too…the longer break she has from the chemo, the more those good ones will build back up, and that’s what we need. They had also planned to put her port in on the same day (so that she wouldn’t have to undergo anesthesia 2 times in a short period of time), and her count needs to be higher for that as well, to help prevent infection and expedite the healing process. So, all that to say, Day 28 is now Day 30 or 31…we don’t know yet, but will keep y’all posted!! And I’ll write another post on what exactly they are doing on this day, and what it all means…
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Throughout this whole process, there have been SO many God sightings and little miracles that we have witnessed. This weekend was a rough one, and I really struggled to see any good in some of the situations, and I have really struggled with the WHY of it all. I’ll bring you up to date on everything, as I explain…
In my last post, I believe I mentioned the fact that Brynna was supposed to get her port in last Monday, but the doctors decided to postpone that due to her fever and low counts in her blood. We figured this meant that we wouldn’t be going home until the following week, but on Wednesday morning, the discussion started, and by Wednesday evening (and all day Thursday) we were getting briefed on EVERYTHING (and it’s a LOT) that we needed to know to bring her home. We have a long list of reasons to call…a list of reasons to head to the ER…2 pages worth of her medications with their purpose, times to take them, and amount…and pages of information on a variety of other things. On Thursday, it was all but confirmed that they were going to discharge us on Friday, and we were ecstatic! Terrified but so, so excited, knowing that having her home would do everyone a world of good. We hesitated to share anything publically though, because we knew that anything could change at any moment…she could spike a fever, she could have skyrocketing blood pressure, she could have a myriad of other things happen (or not happen) that could keep us there. Literally, I couldn’t fully believe we were actually leaving until she was in my arms and we were taking the elevator down. It felt SO GOOD to hold her, completely cord free! Well, she still had her line in her arm, but she wasn’t attached to anything. She had seemed hesitant to go home at first (all she’s known for 26 days is the hospital, and 26 days is a LOT of days to a 2 year old!), but as soon as we had her own clothes on, she visibly settled and a peace washed over her. She clung so tightly to my arm as we walked out, and she felt so good to carry. So, so tiny though…I think Cole is going to surpass her in weight in a month or so, the rate that roly-poly boy is growing!
She was so peaceful the whole way home, but once we actually got home, she started crying. I’m not quite sure why…she was extremely hesitant to get out of the car, so we did it slowly and just comforted her and hugged her until she was ready to go in. For the next few hours, she seemed very tired, which was understandable. We snuggled on the couch watching Wyatt play for a while, and then she ate a bit, but we couldn’t get her to drink anything. An hour or so after getting home, we took her temperature and it was around 99.4. With her condition, 100.4 is an emergency, so even just seeing it go above 98.6 was alarming. When we checked it a bit later it was at 99.9. We found another thermometer, and checked with that one, and got the same results. At this point, it was 4:30 on a Friday (why do these things always seem to happen right before the weekend?), so we called in. They agreed that it was such a bummer since she hadn’t spiked a temp in 6+ days, but to just watch it. Ben decided to take her up to her bed to try to rest for a while, and a bit later, her temp hit that dreaded 100.4 mark. We called again, and they said to take her into the ER.
We obviously hadn’t planned on this happening SO quickly after getting home, so we didn’t’ have a plan in place. My mind was frantically racing, tryign to figrue out the best course of action. in the end, I don’t know that it was the best, but Ben took her into the ER while I stayed home with the boys. And I broke. I just sat down on the floor and wept. I feel like God has sustained me in a mighty way over the past week or so, I’ve been strong through so much of this, but this was it…the straw that broke me. WHY!? Why couldn’t the fever have hit 4 hours earlier, before we were discharged? Why did she have to get a fever at all? It wasn’t fair. It’s NOT fair. It was awful, and my heart broke for her. What was she going to think, coming home for just a few short hours, only to be whisked right back to the hosptial (same room and all)? How was that going to help her emotional health at all? How were we supposed to cope with this? Why were we faced with that decision of how to handle it before we even got everything unloaded from the car? I could go on and on. It just was awful, and I cried a lot. To top it all off, Cole had one of his worst nights. Again, WHY!?! Why won’t God answer that prayer? Why won’t Cole sleep!? It’s just all so overwhelming.
One of the things that I keep reminding myself is that the enemy is doing everything in his power to rip our faith away from God. He wants us angry at God, he wants us exhausted and at our wits end, he wants us to try to handle things ourselves and forget about God, he wants us to turn our backs on God. And right now, he is doing everything in his power to get us to turn away, trying to frustrate us with every little thing (did I ever tell y’all we ran out of gas coming home from the hospital one night? Or that this website I made, completely reverted itself back to an old version, and somehow deleted it’s own back-ups and nearly everything I had done? Or that I’ve been hit hard with allergies this year, and I’ve NEVER suffered from allergies before? So many little things…). Yet GOD. There is no reason that Ben or I should have the strength or desire to get out of bed each morning, but we do. There is no explanation for the sense of peace and hope that I feel day in and day out. There is SO much love, support, encouragement, and care from ALL OF YOU. You all are the hands and feet of Jesus to us right now, you truly have NO IDEA!! I know we don’t always get back to every text or message, or it takes us a while to do so, but please don’t stop reaching out. From the bottom of our hearts, please know how incredibly thankful and grateful we are for you!!
So, back to Brynna’s story…Ben had one of his hardest nights with her Friday night (understandably so), but I had the most peaceful day with her on Saturday! She had been given some meds, but she was way more alert than I thought she would be, and just so peaceful! She smiled for me, she wanted to watch old videos of Wyatt and her, she wanted to watch something other than Baby Bum (praise the Lord for that!!!!), she even SMILED at a nurse! Guys, that was huge haha! In the midst of all of this, the nurse heard her cough, and decided to check her for the flu, and Brynna tested positive for Parainfluenza 3. Whhhhhhy??? (I hadn’t even noticed a cough, so I was incredibly grateful this nurse was proactive!). This poor girl just can’t catch a break!! On the positive side, this most likely means the flu is what caused her spike in fever and it is NOT bacterial (always a very good thing!). On the downside, there’s not a lot you can do for the flu except wait it out, so we’ll see how the next days play out.
I struggle to see the good in any of this right now…maybe she needed that trip home to remind her that she IS going home again…maybe just watching Wyatt’s exuberance gave her peace…maybe seeing Cole role around and play (something she hadn’t seen much of), was encouraging to her. I don’t know. But I DO know, that God uses it all for his plans and purpose. I know that this small battle is yet another stepping stone along our path through this storm. And now we look ahead to this next week, to Day 28 (or 30 or 31), and the results. I’m simultaneously terrified, anxious, worried, and peaceful about it. There is nothing we can physically do to change those results. We can pray, and we can trust God. He is our healer, and I KNOW He can and I believe He will, heal Brynna Kate.
