It’s interesting how you can have such a terrifying and huge diagnosis such as cancer looming over you, and yet the day to day struggles almost make you forget that’s the big war you’re fighting. These past few weeks have felt like one thing after another for Brynna. After we made it through that scary first week, we were focused on her kidneys getting better. Once those seemed to be making progress in the right direction, her delirium hit. Once that seemed to get a bit under control, the fevers hit. And we’ve been struggling with the fevers (and high blood pressure, and still bits of the delirium) for the past week. It’s so frustrating, and my heart just hurts for our girl. Given the state she is in, any fever 100.4 or higher is cause for alarm because it could mean an infection, and her body has been stripped of all defenses that can fight off infection. We’ve hit 101 something many days in the past week, hitting a high of 103.1 at one point. TERRIFYING. That was one day after getting out of the PICU, and when it hit that high, all of a sudden there were 50 people in our room trying to figure out what to do, and what was wrong. They took countless blood cultures over the course of the week, and praise the Lord, everything came back negative for infection!

Chemo can cause fevers, so apparently that’s all it is, but it’s still scary. We were told that we will have many ER visits and hospital stays for fevers over the next few years. Ugh. And it’s the reason why we aren’t allowing visitors and why Brynna won’t be out of the house anytime in the next few months. But we accept this and will do anything to help her on her road to recovery!

A week or so ago, we finally convinced her to go outside with us. There is a really nice little rooftop garden and play area, and the weather has been beautiful…we knew the fresh air would do her good! The first time we took her a bit against her will, and she sat in my lap in a wheelchair. Fast forward a week, and we convinced her to try the wagon and now this girl doesn’t want to get out! We pull her around for HOURS and she’s so calm and peaceful in there. When Wyatt came to visit last week, he wanted to pull her all by himself, and it was the happiest I’ve seen Brynna in a long time.

We thought we might be going home this week, but I think that’s off the table now. Nothing big, just a lot of little reasons, the main one being her port. She currently has a pik line in her arm that all chemo and fluids are given through, and blood draws are taken from. We can’t really go home with that, so we need the port in. Because of her blood counts and recent fevers, they were hesitant to put the port in yesterday (as had been their plan), and now it’s looking like Monday (which corresponds with Day 28!). So, a week more at the hospital maybe? We are so, so, so very ready to get her home…it will do EVERY ONE a world of good!!

This morning she had another lumbar puncture with chemo into her spinal fluid. I knew it was going to be sometime between 9 and 11, and Ben texted me around 7:30am to tell me it was planned for 9, so I hustled like crazy to get out of the house to be here by then. She had to be out under anesthesia for it, and I hated the thought of not being there with her for that…my dad was here, so I knew she wasn’t alone, but as a momma, I just wanted to be here. Y’all, how is it that so many people don’t have to be to work until 9?! The traffic was awful. Just as I was parking, my dad texted me that they were taking her down and I just about burst into tears. It’s the little things that get me. I’m finding I can do pretty well getting news, hearing plans, relaying facts, etc., but it’s the little in between things that break me…cutting her hair (I guess that’s not really a little thing), missing her going down to anesthesia (side note, I was able to meet them there and it all worked out!), being asked how in doing by someone who I knew really wants to hear it, notes of encouragement, Cole not sleeping, etc. God is giving us all more strength and endurance than we ever thought possible, but that grief and discouragement and despair is still there. I have a whole blog post to write on what God has whispered into my heart, but for now I’ll just say that He is constantly here. We can see Him moving, hear Him through all of you, and feel His overwhelming peace.

While we were waiting for everything to be ready in anesthesia this morning, I was talking with the nurse practitioner about Day 28. I told him I was terrified of the what the news would be, and he walked me through everything. He said that ultimately Day 28 just gives them a better idea of the road map, of what the next course of treatment will be. If the test is positive on Day 28, it doesn’t mean that she won’t be cured. The road will be harder and more intense, but it doesn’t mean we will lose her. He said that’s not be even on the table right now (which is so reassuring since all through this past Sunday’s sermon of “Love like you’ve never been hurt by God”, all my heart could scream was, “please don’t take her, please don’t take her!”). He said that it was OK to feel nervous and anxious about next week, but that I shouldn’t feel terrified. I was so appreciative of him walking me through all of that. OF COURSE we still pray with all our hearts for FULL REMISSION but I know that, even if that’s not what happens, we don’t have to lose hope.

As far as Day 28 goes, they will do all the test on Monday, assuming her counts are up a bit, and we’ll get the full results a couple of days later. So here’s our current prayer requests:

– That her counts will be exactly what the need them to be to safely do the tests AND to get her port in

– That her fevers will stay away!!

– That we can come home next week!

– For her delirium to decrease and Brynna to just feel a sense of peace and hope wash over her

– And of course for FULL REMISSION

Thank you all for your prayers, love, and constant encouragement!!