And just like that, we’re nearly half way through this current phase! It’s so crazy to me how fast time seems to go, while simultaneously dragging. We measure our time in 4 and 8  week segments now, and we have slightly over 4 weeks left in this current cycle. Like always, we’ve had our share of hiccups and road bumps, but, for the most part, things are going smoothly.

2 weeks ago Thursday, Brynna went in for her 2nd (of 4) in-patient chemo rounds. Not that it’s ever easy to take her into any of these things, but I found this last one was really hard for me! The week leading up to this cycle had been her best in MONTHS…since well before her diagnosis. Her and Wyatt were playing incredibly well, she was just a joy and delight, and it just felt “normal”. It broke my heart to take her from that, to break up what her and Wyatt were building, but I knew it had to happen. The boys came up to visit 2 times this go, and it was SO, SO good for all of them!! And for us too. 🙂 So, back to her stay…she didn’t have to do a lumbar puncture or bone marrow test this time, so we had hoped we would be a good 6-9 hours ahead of last time’s schedule. However, it was just a slow, slow day all around, and we actually ended up starting the chemo 10 minutes later than the last time. Oh well, what can you do? The lab on Thursday morning was incredibly slow, and she had to make counts before we were officially admitted. Once that info came back, the process to admit her began, and that was super slow as well! And then she has to have a certain pH level in her body for the chemo to start, so by the time they got the fluids going, it was already mid to late afternoon.

There was a little drama that evening, as the shift changed and they discovered that they had been giving her way too much fluid. Praise the Lord it had only been happening for 20-30 minutes, and so they remedied that quickly. I wasn’t at the hospital at that time, but my dad was there for night shift and said that, although it was a mistake, he was very impressed with the way it was handled on all levels. No fingers were pointed, no blame was given (only taken), and they took excellent care of her. There were no adverse side effects to all of that, which we are incredibly grateful for!! They started her chemo that night at 9:40pm.

The next few days were here, there, and everywhere. She is incredibly resilient, and gets tired of sitting in the hospital bed for too long, so we take wagon rides, spend a lot of time in the playroom, and walk the halls. Every time we’re in, she seems to find something new that is her favorite thing that time around, and this time was a little scooter/car thing that she rode around for hours. It was great to keep her moving! The more she moves, the quicker the chemo leaves her body. She even found this little hill that goes to the outside playdeck, and she would push her little car up and ride it down while we chased her with her pole. She was a delight to the ENTIRE floor! From the families to the doctors, to the nurses and security team, everyone couldn’t help but smile, especially those that knew her. The joy she brings to that 7th floor is truly incredible y’all!! She is quite a shining light! 

Some of the days were a bit rougher than others as she fought daytime naps but fought extreme exhaustion. On Saturday night, her heart rate shot up to the 160’s (normal is 100-120), and they couldn’t figure out why. She was sleeping, so she wasn’t agitated or in pain, and everything else (blood pressure, temperature, etc) was totally normal. They listened for heart arrhythmias (and thankfully didn’t hear anything off!), and Sunday afternoon, they ran an EKG. Everything came back normal, and her heart rate eventually settled back into the normal range Monday. It was very strange, and a little worrisome for us, but they didn’t seem too worried (they didn’t keep a constant heart rate monitor on her, for example), so that was good.

On Sunday night, her chemo levels came back at 0.16 and they have to be less than 0.10 to go home, so we assumed we’d be going home Monday morning! They drew labs at 6am Monday morning, and her results came back at 0.11. SOOO close! At the noon lab draw, we got excited when we saw 0.10, but then realized it had to be LESS than, not equal or less than 0.10, so we settled in for another 6+ hours. At that time, they also were worried about the creatinine levels in her body because they had shot up, and the chemo can have adverse effects on the kidneys, and that’s what creatinine levels measure. As the afternoon went on and we talked to the doctor and NP, we kind of started assuming she would be there for another night. My dad was a CHAMP on Monday, and got in at 7am so Ben could go to work (I don’t know how Ben does it!), and hung out all day with me (our car situation that day was complicated and we only had 1 car there), in case Brynna got to go home. If she didn’t get to go home Monday night, my dad was on night shift, and would have pulled well over a 24 hour shift. We so appreciate him and my mom!

They drew labs at 6pm, and at 6:05pm, my dad and I were constantly refreshing the app and results. I watched the chemo level and he watched the creatinine level. 30 minutes later we cheered as the chemo level popped up at 0.08 and her creatinine level had normalized. Within 10 minutes (AMAZING!!) we were discharged, and headed home shortly thereafter. They always run a full CBC (complete blood count) panel before sending her home, and her neutraphil came back at 0.4 on Monday morning. If you remember, she has to be at 0.75 to start her chemo cycles, and after a lot of explanation and discussion, it was decided that she needed to stop her daily oral chemo to let her neutraphil recover, in the hopes that the next cycle won’t be delayed. We went back into clinic this past Friday, after 3 days off the oral chemo, and her neutraphil had recovered to 1.8!! Huge!! So she started that back up again, and we only missed 3 days, which I assume we’ll make up at the end of this cycle.

It’s been a little of a rough go at home these past few days, as we settle back into life. We are SO thankful to be home, but it’s hard transitioning back and forth too. The boys basically hadn’t seen me for 5 days, so they both want and need time with me (and I with them), but Brynna just feels kind of crummy and is needy for me as well. We are so grateful to have the help of my parents daily, especially during times like this past week! It’s hard, sometimes, to gauge what of Brynna’s actions are just “normal” 2 year old antics, and what are a cause and effect of the chemo/sickness/blood levels etc…like, is she acting irrationally simply because she is a strong willed 2 ½ year old, or does she need a blood transfusion? We just have heaps of grace upon grace with her, and with each other as we navigate this tricky, bumpy road. All that to say, though, she never ceases to amaze us! We head back in tomorrow (!!) for cycle #3!

I realize this blog post is kind of here, there, and everywhere. I wrote most of it last week right after we got home, and then never got around to finishing it, so it’s just kind of pieced together. A lot of why I write is to remember things so we can pass it on to Brynna someday…so, I just wanted to highlight a couple of things!

• She is never really a huge eater or drinker at the hospital, despite our best efforts. On Monday, I got myself a Strawberry Poppyseed salad from Panera and brought it in. She ate all the my fruit, and then most of my baguette with butter. She asked for more bread and butter, so my dad went grab her some. First, she used the bread as a tool to eat butter, and then she just pushed that aside and ate the butter straight. She was so thrilled with herself!
• Her sweet nurse Emily, gave her a stethoscope, decorated pink and purple, and Brynna LOVES LOVES LOVES it. We came back from one of our walks to find it waiting for her on the bed, and she proceeded to carry it with her EVERYWHERE after that, listening to her baby doll. She still carries it all around our house every day!
• She has this thing for the plastic gloves, haha. It started at home a couple of weeks ago, since I have to wear gloves when I change her diaper (since I’m still nursing, I have to be careful coming into contact due to her chemo), and she wanted to wear some. When we got to the hospital and she saw they had purple gloves, she was so excited! There was only one left in the box, so she just wore one purple glove around, taking it on and off, so happy.

A quick couple of prayer requests as we head into this next cycle…

1. She has to have a lumbar puncture tomorrow, meaning she can’t eat after midnight. This normally spells disaster, but last time I am confident we witnessed a miracle in her actions because of all your prayers!! Please pray that she is just peaceful and joyful, and the Lord fills her tummy. And pray she makes counts so we can get this started too!
2. Wyatt starts preschool on Monday, and I am sad that it happens to fall on the Monday of her hospital stay. He never really lets on how much these hospital stays affect him, but we can clearly see it. We would LOVE prayer that Brynna passes her chemo faster than she has yet, and that she can come home on Sunday!! Then she can help send Wyatt off to preschool, and I think it would be so amazing for both of them to just have her home, as we embark on this next stage of life.