Well, I certainly didn’t mean to take so long off from blogging! We have settled into our “new norm”, for the most part, but as anyone with multiple littles can understand, free time throughout the day is here, there, and everywhere. My parents are over every day to help with the kids, but even on a good day, I have 30 minutes kid free, and I generally like to try to eat something during that time. 😉 We also have clinic visits twice a week (generally once for chemo and once to check her counts), and we’ve ended up with several blood transfusions that turn what we thought would be a 30 minute visit, to an all day affair. So, all that to say, I’ve been meaning to blog for SO LONG, but time has a funny way of slipping through my fingers. I really do want to blog more consistently, but if you are interested in more timely updates, you can follow our family Instagram account here. 🙂

Last week, Brynna finished up her first month of Consolidation chemo-therapy, and we’re getting ready to start month #2 either this week or next. She has to “make counts” meaning that certain levels in her blood (namely her platelets and her neutrophil count) need to normalize again before the next round of chemo starts…basically letting her body recover enough to handle the next bout of chemo being thrown at it. As of Monday, her platelets were perfect (YAY!!), but her neutrophil count has quite a ways to go. We go back in tomorrow to check, and if she makes counts, then we’ll start chemo, and if not then we’ll wait until next week and check again. This next month is the exact same therapy and schedule as the month we just finished, so it’s nice to know what to expect, and kind of have a heads up about what side effects we are facing…and side effects are brutal, ugh. The drugs she receives the first two weeks of a Consolidation month can make her super nauseousness, and the drugs she receives the last two weeks can make her super constipated. She often tells us her tummy hurts, but it’s so hard to know if it’s a nauseous hurt, a gassy/bloated hurt, or a hunger hurt. I’m sure this is something we will deal with the entirety of the treatment, and hopefully as she gets older, she’ll be able to tell us a little more so we can help her.

This past month has been a roller coaster for sure! Overall, Brynna is doing PHENOMENALLY. Truly. To think about the fact that we are only 2 months removed from nearly losing her, and 1 month removed from when we brought her home, it’s truly incredible to see her progress. She is nothing if not determined, and we constantly hear, “No, I do it!” throughout the day when we are reaching in to help her with something she is confident she can do. I wrote this in an Instagram post last week, and it’s changed a bit, but I would say that, mentally, she is 100% back, and learning more everyday, just as a 2 year old should. To us, this is truly nothing short of a miracle. There were so, so, so many days in the hospital where I just watched her, with tears streaming down my face, thinking of all of “her” that we had lost. I didn’t know if I would ever hear her sing “Jesus Loves Me” again. I didn’t know if she would remember how to stack legos together, or that ladybug cakes were her favorite thing, or if she could carry a conversation, or if she would ever find her sense of humor again. But now? Now she is an absolute delight to behold, a joy to conversate with, and a hoot to watch. She is funny, silly, sassy, smart, and BRYNNA, absolutely, 100% through and through, Brynna. (Not that she wouldn’t be Brynna if things were different, but she is who she was “before”, just with an added touch of both joy and “bobkat” mixed in). And there are so many things that she does or brings up or insists on from “before” that we haven’t talked about…her memory is intact, and I am so thankful for that (but also hopeful that many of those 30 days are a blur). Physically, she is probably at about 90% of WHAT she can do, but only about 75% of her ability to actually do it (for example, she can walk everywhere, but it’s not as steady as it was and standing straight up from sitting doesn’t come easily still). In all honesty, the only thing we haven’t seen her able to do is climb the ladder on our swingset, and I’m kind of ok with that. 🙂 She is even scootering in our driveway, much to my mama-bear dismay/fear/pride/awe.

The nights and naps are the hardest, and sometimes just impossible. Ben generally takes the majority of the nights with her and I take Cole, who does seem to be slowly improving in that department (praying it continues!). I think Brynna’s sleep issues are complicated, and we just have to come to grips with the fact that this could be an ongoing thing throughout the process. To be fair, Brynna has never been a great sleeper. It took her 15 months before she slept through the night, and even then, it wasn’t consistent. We moved her into Wyatt’s room earlier this year in the hopes that being with him would help her sleep better, and it did! Until she got sick. And then throw in a 30 day hospital stay, delirium, leukemia raging through her body, chemo drugs battling the cancer and all her good cells too, and the horrid side effects that those can bring, and it just makes sense (doesn’t make it easier, but it makes sense). She’s had some night terrors (thankfully not many of those!), but mostly she just wants us with her. She gets hungry in the middle of the night nearly every night. She wants and needs to be snuggled. The list goes on and on. It’s heartbreaking to be honest, but also extremely frustrating, exhausting, and depleting, especially in the middle of the night. Ben handles it all extremely well, and I’m so thankful for the time he spends in there with her. She is starting to show some signs of improvement lately, but that could easily change back, and probably will as we start the chemo cycle over again in the next few days.

Part of me feels like we have been battling this forever, and I’m shocked when I realize we’re only 9 1/2 weeks in (and utterly sad and demoralized when I realize we still have at least 25 months left…most likely more, accounting for delays with counts, fevers, illness, etc). It’s hard, it’s brutal really, and it just sucks (and I hate using that term, but it’s the truth). We’re only 2 months in, and I feel like we’ve missed out on so much already. I’ve had to say no to baby showers and friend get togethers. I’ve had to miss MOPs meetings that would have warmed my soul so much. Ben has had to skip Men’s breakfasts and guy time. We’ve had to miss a family wedding, the Allen family beach vacation, and all of our small group gatherings. We can’t make plans. We can’t do play dates. We can’t just swing by the grocery store to pick something up, or go out to eat. It can be lonely, and I grieve all that we are losing. Words can’t express how incredibly thankful I am for our miracle girl. I would give up so much more to still have her with us…but I do think it’s still ok to grieve the loss of life we planned and life as we knew it. I think January (the projected start of her “Maintenance” phase) will bring a more “normal” norm back into our lives. We’ll still have to be SO careful in so many aspects, but I think the intensity of things will decrease. I think. I hope. But until then, so much is put on hold or pushed aside. And I struggle with that sometimes, and I just thought I’d share. And as a note, I share that not to garner sympathy or show a “whoa is me”…we have a hope in God, and a peace from Him through all of this, but it’s also a real struggle I wanted to share…I know many people are facing storms and trials that bring a loneliness to their lives as well, and I just wanted to share that you are not alone in this! Don’t be afraid to reach out to others as well…I have found that people WANT to help and sometimes don’t know how (I certainly wouldn’t know how if I was on the other side). We are SO incredibly appreciative of all of you!

There are so many of you that continue to reach out, and you have no idea how much that means. We may be slow in responding, but please know that every text, letter, message, phone call…mean the WORLD. Your encouragements, knowing we are not forgotten, your prayers, and your love mean the world, so thank you. Thank you for loving on our sweet girl, having abundant grace on us, and for lifting us up and encouraging us in the day to day.