Last THREE PEAT and Cycle FOUR

We are officially HALF WAY through with chemo after completing the last two back-to-back methotrexate treatments. After the first mostly uneventful stay the weekend before, I wasn’t sure what to expect the follow-up weekend. He didn’t have as much anticipatory nausea and I ran home and for his guitar. He played for a bit, but not much before his stomach started to hurt. Half way through the infusion he started to feel it and the nausea kicked in and his appetite disappeared but not before he ate a cheeseburger.

He told Doozle to hold it down before he left and he complied. Doozle just has a way of know who isn't feeling well in the house. He heads to Eli's room every morning and sleeps on the LoveSac. Sometimes I hear Eli telling him to stop snoring.

He slept all day Saturday but did eat some dinner. However, that was the last time he ate the entire stay. He was awake a little on Sunday and then slept through Monday. His levels dropped decently the first 24 hrs but I wasn’t that encouraged after 48 when he was at .13 and even more discouraged when they redrew labs and his number HAD. NOT. BUDGED late Monday night. Tuesday morning he was .11, the highest he’s been at the 96 hour mark, and the longest we’ve had to stay. Normally we go home early on Tuesdays. Eli had been saying he wanted to go home since Friday. This stay felt like the longest mentally because it just went by so slow.

We were given the option to redraw 6 hours later and risk not being low enough or just wait it out and redraw at 8pm with discharge papers ready to go. Sure enough he was at .08 by 9:30pm and we got to leave, shower and sleep in his own bed. His nausea finally subsided even though he did have a pretty bad headache Sun-Tues. After we got home the headache felt better and not as bad as previous treatments.

He had an ECHO scheduled while we were in-patient and his heart shows good cardiac function and no evidence of chemo-related heart damage so that’s great news

This weekend was the final Cisplat treatment and I am so happy to check that off our list! It also means this was our last three-peat weekend.

I love him so much. I wish I could take this away, do the treatments for him, speed up time and heal him. I often wonder why this had to happen. Why is he 1 out of 450? I know wondering doesn't change it. I know there are lessons, growth opportunities, challenges for new perspectives, outlooks and personal development. I know this is just a little roadblock in his journey and we will look back and have an "aha moment", like "oh, so that's why". It's hard to zoom out when every second, minute, hour is consumed sometimes with thinking, planning, executing. Right now we are fixated on minimizing symptoms, maximizing comfort and planning on healing.

This weekend we got our OG room with the big window. We got our OG nurse who’s been Eli’s ride or die since Day 1. After a quick 36ish hours, we were discharged at 10pm and headed home.

We will have a nice break for a few weeks. We rescheduled his PT eval until next Friday. We are happy to be moving forward with the next part of healing and getting his leg stronger to begin bearing weight at some point. Here are the 6 week post-op XRAYs. Everything is still seated correctly and looking good. 

The bone shows some early bone remodeling and strengthening, especially around the fixation pins, which is encouraging.

For now we take a deeper breath in. Eli has plans to attend as many baseball practices and games as possible during this next few weeks off from treatment. The weather has turned for now and the warmth on my bones and in my soul feels like an amazing promise of what's in store for the rest of 2025. 

Round 2 Cycle 3 + Hearing + X-RAYS

“I’ll take…

’Not Looking Forward to Chemo’ for $2,000, Alex”.

We like to watch Jeopardy as a family. Eli knows a lot of stuff and has always been good at retaining the information that he cares about and other random trivia.

When we watch Wheel of Fortune, we yell at the contestants that buy vowels. I’ll never understand that strategy.

Our strategy with this cancer continues to be mopping up any rogue cells post-surgery. We had a good almost three weeks off, other than some clinic visits to check counts.

We were able to help out at the baseball fundraiser dance and I know he loved seeing everyone.

We had a snowy week and crutches make me really nervous in the snow.

We went to clinic on Friday, which happened to be Valentine’s Day and he had lost his appetite a couple of days before. He wasn’t feeling good before treatment began and slept literally ALL day Saturday but by Sunday he was feeling good and his appetite had returned and he was hungry.

He stayed awake all day and continued to feel good Monday. He played Uno with his nurses. His levels were dropping like they should but I wasn’t hopeful that he’d be low enough to leave when they drew labs at 430pm. We took some guesses. I thought he’d be at .11 and Eli said .12. He came back at .10.

We redrew labs at 10pm and by midnight we were discharged after he got to .09. I didn’t care how late it was, we were definitely sleeping in our own beds!

His hearing was rechecked on Wednesday and the audiologist said the hair follicles in his ears look really good. He only has one more Cisplat treatment so that was encouraging to hear, literally. She said he has really good hearing and this seemed like an unexpected and overwhelming positive outcome.

“I’ll take…

’Sounds Like…’ for $2,000, Alex”.

His 6 week xray was performed today and nothing has loosened and hardware looks good. He even has some bone callousing around the implant which is a sign of healing and growth. The incision continues to look good. He was instructed to continue to stretch it straight, bend it more than 90° and do some leg lifts to wake up his sleepy quad. But Dr M said he’s doing better than most. We have a PT appointment next week.

“I’ll take…

’Bone Growth’ for $2,000, Alex”.

His hair is gone again and it’s been about 2.5 weeks since the last Cisplat treatment so we knew it was coming but he was enjoying the regrowth.

We’ve got an early morning checking in at 8:15am, but that just means we get started earlier and maybe can leave earlier. This is the last treatment to round out Cycle 3 and we are officially half way there! WOAH!

Cycle 3 Week 2

We are officially four weeks post-op and if you would have asked me in late December what late January would look like I would have explained a worst-case scenario situation. I was really bracing for the worst, expecting that life would be, and feel, a lot different than it currently does. I anticipated a really difficult post-op healing and recovery with a lot of pain, a nasty scar and a bed ridden kid. Time has a way of putting space between what was and what is. It doesn’t seem possible that we are already a week into February.

He's done an amazing job logging into school every day and catching up on all of his assignments, completely on his own, without any reminders. He's also kept himself busy building LEGOs.

“I’d trade all of my tomorrows for one single yesterday”... Bobby McGee by Janis Joplin is on my "Jams" Spotify playlist and it came on yesterday. This lyric stuck with me. So many days I long to go back, to get a chance to do life with them over. I feel like I probably romanticize a lot of it, remembering the fondness of it all and not the difficult moments. I wonder if I appreciated it when I was in the trenches, or if it's easier to wax nostalgic for days gone by and times long past, now that they are older. I don't know who I want to blame or thank on any given day depending on if I'm currently viewing time as a gift or a theft.

Eli had a decent week last week after treatment only dealing with some mild delayed nausea triggered by some isolated events but still maintaining a good appetite and kept the weight on. We went to clinic last Friday to check counts and he hadn’t dropped too low at that point. Then the weekend was mostly gray and pretty uneventful.

Peep the scar.

This week Eli had a follow up appointment with the surgeon here, who did the original biopsy. Everyone seems really impressed with Eli's healing thus far. His incision looks really good. He has a lot of good muscle strength and range of motion. The plan is to take x-rays in 2 weeks and see what bone growth looks like. He’s been able to shower completely on his own and get up and around. We aren’t using the wheel chair that much. He’s able to get along really well on crutches. The most important worry is to make sure he doesn’t fall. We've had a really dry winter up until this week and have now been dumped on a couple of times. 

He made me text Dr. G to ask if he can drive. He replied that we can revisit in a couple of months. :) 

Waiting to see the ortho surgeon.

We had our clinic appointment a day early so we could see Dr V (his main oncologist) because we haven’t seen her since before surgery. She was also impressed with his progress, healing and lack of pain. It’s actually crazy that he only needed pain meds for 12 days after surgery and only 6 days after we left the hospital considering how much pain he was in for the first 5 days.

We have confirmed that he only needs ONE more Cisplatin treatment in Cycle 4 so on these treatment weeks (week 1) he can go in to clinic and get the doxorubicin infusion on day 1 and 2 and go home so that’s TWO less hospital stays in his schedule.

We go back for inpatient treatment on 2/14 (I’m sorry Riley) and this will be the last of our three-peat stretch. So three more hospital stays this month and then only four left for the next few months.

His counts Friday weren’t as non-existent as last check this same time period, but still low. His hair has grown back so much. He had too many eyebrows to begin with and got to keep those and although some of his pretty lashes fell out, most have grown back. I would imagine that this last dose of the Cisplat will make these strands come loose again, but he's my handsome either way.