Holy moly, I can’t believe it’s been weeks since my last post! It’s been a doozy of a time, these past couple of months, between an unplanned hospital stay, multiple transfusions (and allergic reactions to said transfusions), and all the chemo, not to mention the holidays. If you follow on Instagram, I have started to consider that my mini-blog. It’s pretty easy to take a few minutes to post a quick update, than to sit and write a blog post…however, my heart is still to blog, and blog much more regularly, so here’s to hoping that we’re in a good stretch! I have so incredibly much to update on here, but for today, I just wanted to give a look into the cycle we just started.
You guys…this is THE LAST intense chemo cycle!! Hallelujah!!!!!! Now, she will have a year and a half of long term maintenance (which is by no means a walk in the park, and brings steroids back into the picture every month – cue the tears), but things should slow down, trips to clinic should lessen, and we should hopefully be able to find some semblance of routine and our new normal.
Brynna officially finished her last cycle (Delayed Intensification) on December 17th. It was an awful, horrible, terrible cycle, but we were prepared, and we knew it would be. I think we’re all still digging out of the fog that cycle created. Brynna didn’t make counts right away to start her next cycle (I’m not sure she’s ever made counts without a delay of some sort), but 9 days later, she just squeaked by, with an ANC of 747 (can’t get much closer to 750 than that!). Due to the fact that Brynna’s numbers “go gangbusters” as her oncologist puts it, once they start going up, they decided to go ahead and get her started on this next cycle. So, on December 27th, Brynna started her LAST intense round of chemo, called Interim Maintenance 2.
Now, if you recall, she had Interim Maintenance 1 back in the fall. This was the phase that had 4 planned hospital stays, with high-dose chemo (methotrexate for anyone that is curious about the name). This round is similar, but with MUCH smaller doses of the drug – in the hospital, she received 1000mg, now she is receiving 100mg, 1/10th the intensity! Crazy, right!? Brynna soared through Interim Maintenance 1, so we are expecting and hoping that this cycle is smooth for her as well. She gets a few other chemo drugs as well, so here’s what the cycle looks like (it’s 8 weeks, just like all the others):
Day 1 – IV Methotrexate, IV Vincristine, Lumbar Puncture (spinal tap) with chemo
Day 2 – PEG (this is the chemo drug that they have to monitor her closely for allergic reactions. She’s never had one, and I am SO thankful!!)
Day 11 – IV Methotrexate, IV Vincristine
Day 21 – IV Methotrexate, IV Vincristine
Day 22 – PEG
Day 31 – IV Methotrexate, IV Vincristine, Lumbar Puncture
Day 41 – IV Methotrexate, IV Vincristine
Do y’all see that?? Except for day 2 and 22, she goes in ONLY every 10 days!! This is HUGE. During DI, we were in at least 2x’s a week…once for chemo, once for labs to check her counts and see if transfusions were needed. And to top it off, her numbers should stay relatively strong through this cycle, and I am so, so, so very thankful that (barring something unforeseen), she shouldn’t have bottomed out numbers again…just in time for flu season. 🙂 Also, just to add about the chemo, the IV methotrexate is increased by 50mg each time if she makes counts (750 ANC and 75 platelets). Her ANC on Day 1 was 747 (as I mentioned earlier). On Day 11, it was 2700. Gangbusters.
If you follow on FB or IG, you know that we did have a little hiccup last week, when she spiked a fever. Wyatt had gotten sick on Christmas Eve Eve, and we did our absolute best to keep the germs at bay, but you can only do what you can do. It was obvious last Sunday that something was bothering her, but we thought maybe it was just a delayed reaction to the chemo. She slept awful that night, and Monday was just a really hard morning where she obviously felt crummy. I kept taking her temperature every half hour or so, just in case, and I called her nurse just to put a bug in her ear that something wasn’t quite right. A little after noon, I took her temp again, and it had spiked. Not 30 minutes earlier, it was in the 97’s, but it hit 99.9 and 100.4, and that means an ER visit. We started packing our bags and getting ready, while I put a call in to the on-call doctor (it was NYE, so clinic closed at noon). Brynna’s sweet nurse called back a little while later to check in on her, and got everything set up so the ER was expecting her.
My sister and her husband were in town, so Mary joined us in the ER – a little girls outing I suppose. They took Brynna’s vitals, drew labs, and immediately started her on antibiotics and tylenol (all standard). 4 days earlier, her ANC had been 747, and we were all floored when it came back at a whopping 2200. It TRIPLED in 4 days. Crazy!!! They also ran a full viral panel and she tested positive for something called Human metapneumovirus. It’s a “cold” that can feel like the flu, and take forever to go away, but it wasn’t the flu or strep or an infection, so that was good! It was a long, long afternoon and evening in the ER – I think we were there 6-7 hours – but Brynna was discharged because of her incredible ANC. She was up and down while we were there. We could tell as her first dose of Tylenol wore off and her fever spiked again. Her heart rate soared up into the 180’s along with the increased fever, and they gave her a powerful antibiotic, that was set to last 24 hours. After a 2nd dose of Tylenol and a bulus (IV fluids), they let us go home, with the instructions to come back the next day if she spiked a fever in the afternoon (basically after the 24 hour antibiotics wore off). At this point, I figured we would be giving her Tylenol throughout the night, just based on how her fever spiked so quickly again in the ER.
We got home a little after 9pm, and I posted about our trip and asked for prayer. When we climbed into bed at 10:30pm, it was time for her Tylenol, but she didn’t need it. Her fever never came back. POWER OF PRAYER. Thank you to everyone who prayed!! We saw and felt it!! All in all, it was a long day, but she slept through a ton of it, and my sister and I got some quality time together. 🙂 It may have been in the ER, but we’ll take what we can get!
Since then, Cole, my dad, and I have all caught this nasty little bug, and goodness, it knocks you down. Ben and my mom are the final 2 standing, and I am so thankful!!
So, all that to say, it’s been an eventful first couple of weeks of this cycle, but we only have 6 weeks left. Crazy.
A HUGE PRAYER REQUEST right now though, is radiation. Her team is reaching out to others across the country who specialize in radiation portions of treatment, trying to figure out if they can delay Brynna’s radiation. I’ll do a full post about everything radiation related soon, but basically our request is that they find out that they can delay radiation, even 6 months. Preferably until the end of maintenance, but ANY delay is good. Radiation is scary for anyone, but especially under the age of 5, and if she has to get it as scheduled in her protocol, she won’t quite be 3, and our hearts break with the thought of that. So, please pray that the answer is clear and easy, and that it can be delayed.
I’m so grateful to hear again how you’ve seen and felt the Lord’s power at work on behalf of your family. I cry every time I read your posts with just a tiny glimpse of what you guys are going through. Jesus is still our great healer! Praying for you!