Maintenance. I can’t believe we’re actually here! Nearly 11 months of crazy intense chemo, bottomed out counts, and more clinic visits than I care to count. At the beginning, and during most of our intense phases, I looked forward to maintenance as something “easy”, when the pressure would let off, when we would be able to get back to “normal.” I saw it as the light at the end of the tunnel. Yet here we are, and to be honest, I’m terrified. I posted it on my IG earlier this week, but it’s a battle of emotions for me. I should be excited. I AM excited! This is a HUGE milestone. These last 11 months have been full of so much grief, heartache, worry, fear, and anxiety that I hope NEVER to repeat. Yet, here we are, on the cusp of the next big cycle, and that fear and anxiety and worry has crept back in.

Until a couple of months ago, I was completely blissfully ignorant that relapse could happen at any time. For some reason, I thought that, as long as Brynna is on chemo, she’s good…and the further you get from diagnosis day, the better. Partially true. However, turns out that the majority of relapses happen 18-24 months after diagnosis day…and that’s smack dab in the middle of “Maintenance”. But what I keep reminding myself, what God keeps reminding me of, is that, yes, the past 11 months have been awful, BUT….BUT they have ALSO been full of joy, thankfulness, peace that passes understanding, love and grace and encouragement beyond what we ever could have comprehended. Your prayers, your encouragement, your love (both in words and tangible ways), your “showing up”, your grace, means MORE than you will ever know. Truly.

So, as we enter this next phase that will last for exactly 528 days (not that I’m counting, but we have 526 left), we still covet your prayers more than anything. Prayers for COMPLETE healing for Brynna. We do believe God has fully healed her and is continuing to work in her body. I just see God using this little girl, and our family, as a testament to the power of prayer, and trusting in the great I AM. So, please, please keep praying! And pray for peace for us. These next 500+ days (and after really) will be wrought with anxiety and worry and fear, but we desire to give those to the Lord every day…lay them at His feet and let His peace fill our hearts. I came across this verse today, and it’s one that I will cling to every day:

“For I am the LORD your God who takes hold of your right hand and says to you, Do not fear; I will help you.” || Isaiah 41: 13

So, what does Maintenance look like for us? Well, here’s a little glimpse:

• Daily oral chemo at home, until August 7, 2020 (525 more doses to go! I think I’ll make a paper chain, you know, in all my free time)
• Weekly oral chemo at home (every Tuesday)
• 5 days of oral steroids at home, every 4 weeks (Tuesday-Saturday, and her first day was this past Tuesday)
• Monthly IV chemo at clinic (only 1 clinic visit a month!! Say what!?)
• Lumbar puncture (spinal tap with chemo), every 3 months (except for these first few months, where she gets it monthly)

It was back in October, I think, when I first realized that steroids were a regular part of Maintenance. I’m pretty sure I cried a bit, and my heart sunk. There is no easy way around the steroids, you just have to power through. We’re about halfway through this first week of them, and she’s doing so well (especially compared to the last time she was on them). Sleep is really tough, her energy is low, she just needs to be held, she already has dark circles under her eyes, but she is trying. Oh this sweet girl, she tries so hard to be in good spirits. We’re SO thankful it’s only 5 days, but at the same time, it’s a little (ok a lot) overwhelming knowing she has to have them for so long. These weeks are really hard, but we’ll get through them. I had freezer meals planned for each evening during these 5 days so that dinner is one less thing for us to have to think about. 🙂

But guys!!!! Here’s the GREAT NEWS!! They really, truly encourage and want us to be able to get back to “normal” as much as we possibly can. The goal in maintenance is to keep her counts at a low, but good level. This means that her ANC (basically her immune system numbers), will be high for her, but slightly below what the normal range is…but she can come with us to things again. She can see other kids, PLAY with other kids, BE a “normal” kid as much as she possibly can. I can’t even tell you how excited we are for this!! As she will still be more susceptible to catching viruses (and a virus/fever will still earn us a stay at the fine MCV accommodations), we will wait until flu/sick season has completely passed…but I cry every time I think of the first time we get to come back to church, as a full family of 5. It’s soon. Oh, it’s coming so soon, and I need to stock up on waterproof mascara.

Also, August 2020. Save the date friends. We are going to CELEBRATE!!\