Details all blur together. It’s hard to look back and remember what happened when.
So, this is my attempt to document the start of Cycle 4 (I started this over a week ago). Her in-patient day for chemo was Thursday. It’s the last scheduled “big chemo”. After this the remaining 12 chemo doses can be given in the clinic at the hospital instead of in-patient.
The difference is cyclophosphamide. It has to be in-patient because it needs 3 doses of a “rescue med” after to help protect the bladder. These doses have to be separated by 4 hours each The first is given with the cyclo, but then the next 2 each need to be 4 hours apart.
So, we checked in a bit later than 8 this time. We had to wake Joanna up -which is unusual. The day before had been grueling -all day at appointments. First the consult with the radiation oncologist, then vitals and blood draw, exam, urine analysis. Then home. Full! That was followed by a delicious dinner. A lady from church knew Joanna likes beef roast, and had even chatted with her about sides. We opened “love in an aluminum pan” that night -beef, green beans, and mashed potatoes. Amazing. Then, people from church came over to pray and sing with and get an update from J. It was really encouraging.
We started out in a room at the end of the hall that didn’t get any wifi reception. We’ve been down there before -it makes a tough day even harder. We can’t play bingo with the Child Life staff, watch on demand TV through our Roku, or use our phones well since they look for wifi first. It is a surprisingly big deal to have no/bad wifi in a place that’s supposed to have it. So, we asked if there was any other room available that had working wifi. There was, so they moved us down the hall. It was the only other open room on the floor.
YAY! Except, we discovered after awhile that the a/c wasn’t working quite right. We assumed at first that it just hadn’t been turned on long since the room hadn’t been prepped for us like the other had been. As the day went on and the maintenance worker came it became obvious it was just not working. So, it was HOT in our room. Our girl doesn’t do well with being hot in good times. Chemo is not good times, this was really hard on her.
Also, she threw up way more in the hospital than ever before.
When she wasn’t vomiting she was sleeping -partially due to the benadryl added to the “stop the barfing” meds plan. Getting that stuff through the IV line in her port knocks Joanna out in about 10 minutes.
We do have a pretty good funny story. The night before I had texted one of the ministers who’d previously let us know to reach out if there was anything they could do. I asked if he could find someone to bring us Grandys for lunch. It ended up when he got there Grandy’s was closed due to not paying tax. So, he called and we figured out Churches was close and sounded good. Chicken is still tasting good to Joanna. So, she peeled off the skin and worked her way through several pieces. She hadn’t really eaten breakfast, so we let her keep eating. We had a good throwback to her toddler days when she fell asleep right after pleading for more chicken. The benadryl kicked in and she passed out. We had extra chicken that we were able to share with the maintenance guy who’d worked on the a/c.
After waking up from the benadryl nap we had a bit of time to go to the Zone during it’s open hours. She rallyed for that. It was cooler down there and she got to do some fun things… air hockey vs. Dad and then a turn with the new VR headsets they have. She really liked that part. Plus, visiting with one of her friends who works there was a bright spot for her.
After the Zone we go to go to a Lego Party! This was super fun. The K Club is a group who does some pretty cool encouraging things for kids going through treatment at the hospital here. For the Lego Party they set up a long table with cool Lego sets and the kids get to pick one to take home. It was fun to see some of them kiddos struggling to decide which set to pick because there were so many great sets. It was also neat to be reminded we aren’t alone -seeing the others families who were there out of their rooms was encouraging.
Morgan left to pick up some dinner from Wendy’s -a baked potato sounded good to Joanna. When he got back the food smelled bad to her, so she decided not to eat and he went looking for somewhere to eat his meal. That was a bit tricky with the covid restrictions at the hospital.
Next she slept some more. It was so, so hot that they moved us to the infusion room. Joanna moved into a recliner and passed back out. There were a few barf bags needed in between all this.
We made it home late Thursday night. There was some talk of maybe staying -she was vomiting so much and her temperature was higher than normal. Not dangerously high, but higher. It started going down once we moved from her bed in the hot room to the recliner in the other room. So, there was no real need to stay and we figured our house would be much cooler, and she’d get better rest at home.
She got a cool poster/card from the staff congratulating her on her last in-patient chemo. Yay for celebrations! She enjoyed reading all their encouraging notes on it.
Friday she had been looking forward to swimming after getting her last “after big chemo” shot. Unfortunately she was feeling pretty crummy and tired, so no swimming for her.
Sunday afternoon we got to go to the blood drive that some Girl Scouts planned for their Silver Award. It was going well, and then it ended up being a really good thing that I keep a barf bag in my purse. It’s crazy how quickly things go from ok to not ok.
Monday she woke up and had bloody nose. We checked our manual from the hospital and followed the instructions about that. Thankfully it stopped without and ER trip. Once that was all worked out we got to play at the park with friends. It was so nice to have some friends willing to mask up and meet outside for a bit. A real highlight of her week!
While at the park, I got a phone call from the person prepping us for the MRI the next day. I had a bag with all the stuff I thought we’d need – barf bags, water, wipes, sunscreen, kleenex, etc. But, no paper and pen! Just when you think you’re getting a handle on things you figure out you really still don’t have it together. Thankfully, I was near the car where my purse did have paper and pen. And, it was a good thing -because the MRI location was different than the previous 3 she’d had. So, I needed to be writing down the info -or we would have checked in at the wrong place!
The chemo that she is taking is known to cause constipation. It definitely does for her. In spite of following recommendations from her medical team, she’s been spending lots of time on the toilet due to this.
Though this round seems to be hitting her harder than the others, she is super excited to be done with cyclo. It means no more admissions -so, no more covid tests (until port removal time), and no more day-after chemo shots. The remaining 2 chemo drugs don’t require the shot. It’s so refreshing to see her celebrating this milestone. She has quite a road yet, but what a great reminder to celebrate every chance we get!
OK, I’ll end with our Tuesday morning conversation. There’s much more I could share about the days in between, but this is already WAY to o long. I asked how are you? Good. Not wanting to get the CT scan and the MRI, but good.