Early this morning, Chase had a fever that broke on it’s own!
This is a huge blessing as he has been struggling with higher fevers broken only with medicine since Saturday.
Also, his lab work came back showing improvement to the level that he won’t need any blood products transfused today.
And here’s the best part… Last night, he reached across the bed, patted my arm, and smiled. He’s been so sad and pained for so long this week that I’d forgotten how much I’ve missed his good moods until that smile broke through.
Our trip to the hospital this weekend was unscheduled, but it wasn’t completely unexpected.
Up until now–as we’ve made our decisions about Chase’s treatment plan/location–we haven’t said too much about AT/RT, but if you read “The Other Shoe” and googled that specific cancer, you probably already have an idea about what this looks like.
The truth is that AT/RT is very aggressive and doesn’t have a great prognosis (I won’t share the exact percentage here because Chase is either 100% with us, or he isn’t and that’s all that really matters). Regardless of statistics, Chase is a fighter, and the cancer’s aggressive nature requires an aggressive response.
Treatment of AT/RT is a little like a Looney Tunes-style destruction of cancer cells: they’re going to punch it, and then kick it off a cliff, and then half-way down the cliff, catch it and put it in a cannon and shoot it to the moon… then let it fall to earth to explode in a fiery ball of death in the side of a mountain (I’m picturing Wile E. Coyote in my head right now).
What this looks like in real life is: getting to know the hospital REALLY well. Chase’s treatment protocol is front-loaded to try and force a remission and so for almost the entire first half of the year-long period, he is scheduled to receive chemo every week (yes, every week).
Because of this, he is going to be in a pretty continual state of low immunity, which means he’s prone to every infection and will get fevers very easily. Because of this, he will probably have a lot of unscheduled hospital visits (like this weekend) for antibiotics, transfusions, and extra monitoring. Chase’s oncology team had been verbally preparing us for this from the first day. It doesn’t save us from seeing him in obvious pain in a hospital bed with a fever of 104, but it definitely helps prepare us to expect it.
Does it sound crazy? Yes, probably, but our son’s life is the answer to that question, so how could we ever NOT pursue this treatment.
I do not know how this year will end or what the long term effects will be on our family.
Here’s what I do know… We are going to get through it (let’s all say it together) …
Moment by moment through GRACE
The heart of man plans his way, but the LORD establishes his steps. –Proverbs 16:9
A hospital is not exactly the best place for non-patients to get sleep. We found that Ellie and I were having a hard time getting enough sleep, with Chase being up multiple times every night (and especially worrying that he’ll start scratching his incision in his sleep).
One of the nurses in the PICU told us about the Ronald McDonald House, which has been such a blessing to both of us over the last few days. I don’t know how many times I’ve seen the donation slots at McDonald’s over the years, and never thought about what they do.
Ronald McDonald Houses are all over the country near major hospitals. People that bring their children to a hospital for medical treatment often need a place to stay. It’s their “home away from home.”
The Ronald McDonald House near Lurie Children’s Hospital
I was amazed when I walked into the Ronald McDonald House near Lurie Childrens. It is an amazing place. When the new Children’s Hospital opened up, Ronald McDonald also moved to a new location. They have 60 rooms where families can stay, and it feels like a 5-star hotel. They encourage families to mingle with each other by not having TVs in each room, but they have a common room on each floor where people can be together. There’s also a kitchen where a family can make their own meals together, and a commercial kitchen where volunteer groups come in to prepare meals for the families that are there.
The kitchen at Ronald McDonald House
David and the staff and volunteers at RMH have been so loving and caring for us over the last few days. It has been such a blessing. I’ve slept multiple times over there (sometimes just to nap for a few hours), and when I can pry Ellie away from Chase’s room, I’ve sent her there as well.
I know that now that I’ve been the recipient of this wonderful organization, I won’t be able to pass by the little donation slots at McDonald’s without remembering what I’ve been given.
