Last month, I could see a light at the end of the tunnel. A light that signaled the end of the crazy year we’ve had with Ian starting chemotherapy. But that tunnel seems to be going a little longer than I thought it would.
Last Monday, Ian was supposed to have his 3-to-4-month scan. Unfortunately, our entire household came down with some kind of virus. We had cold symptoms, including a dry cough. We did get tested for COVID as a precaution, and the results would eventually come back negative, thank goodness. When Ian gets his scans, he has to be sedated since he’s only 4 and has to lay completely still for an extended period of time. Due to Ian’s cough, however, this can pose complications for sedation, so the scan had to be cancelled. This scan was supposed to help us and our oncology team what steps should be taken next, including if this cycle really would be our last cycle or if we should go for another. That’s step back 1. With this scan, Ian was also supposed to undergo a CT scan to make sure his skull bone healed properly from when he got his biopsy 2 years ago. We wanted to get Ian involved in soccer once his chemo ended, and his surgeon just wanted to check for this one little thing before clearing him. Set back 2. Ian was also supposed to get a skin biopsy done while under sedation. The only way medical knowledge can be gained is to allow certain tests and procedures to be done. If allowing this with Ian helps the next family who gets the same or similar diagnosis as us, it’s worth it. No family should have to go through this. So, when our doctor told us there is new findings about kids with certain brain tumors, an eye defect, and a birthmark, we were on board. (Ian is missing part of his iris on his left eye and he has a birthmark on his back.) Between the scan being pushed back and now the insurance deciding to not cover the biopsy because we just had extensive genetic testing done, the skin biopsy was also cancelled for the time being, causing set back 3.
Ian was due to start his last round of treatment on November 15, meaning it was all supposed to be officially over on November 22. Unfortunately, Ian’s platelets were too low on the 15th, so things got pushed back a week. We returned on the 22nd, but due to the cold we have all had, now his ANC is too low (his body’s ability to fight infections). Push it back another week. This past Monday… still too low. At last discussion with Ian’s oncologist, we’re going to check his counts one more time this upcoming Monday. If counts are okay, we will finally proceed with cycle 12 and be officially finished with chemo on December 13. If they are still too low, it was decided to not proceed at all with cycle 12. Towards the end of chemotherapy treatments, it’s not uncommon for blood counts to take longer and longer to bounce back. But if we get to the point where it’s taking 4 weeks to bounce back, it’s a good signal that Ian’s little body has had enough. And he has. We all have.
Monday the 6th, possible chemo. Monday the 13th, possible chemo if we get chemo on the 6th.
December 17th… scan day. December 20th…scan results. The light at the end of the tunnel.
This won’t be the end of our journey though. Just the end of this regiment of chemo. The next step is to get Ian on a clinical trial drug that targets the specific mutation that caused his tumors. We are praying so hard for this to work. For this to actually shrink the tumors. But we’ve also learned to expect the unexpected in these kinds of situations. It’s hard not to be hopeful though.
Another positive about this clinical trial is that it is a capsule. So Ian can take it at home, where he’s most comfortable. This takes out the stresses that going down to the hospital has on him. It’s very difficult for any 4-year-old to go through something like this, let alone one with learning disabilities and sensory issues.
The earliest they are thinking the trial could be released is the spring. I’ve been feeling very stressed about all the setbacks we’ve faced the last couple weeks. I was so excited for this to be over 3 weeks ago. And then it just…wasn’t. On top of this, we’ve had other externals that have been as equally stressful. Sometimes it’s all just too much. It’s hard to come out of that darkness when nothing seems to be going right.
But then something else happens. This time it’s good things. Things that make you smile.
We had what’s called an IEP meeting with Ian’s teachers today. Because Ian was diagnosed with Autism, he goes to an early intervention preschool. There was a realization that our baby starts kindergarten in the fall. Yes, kindergarten! Today’s meeting was about where Ian’s skills are now, what his next goals are, and the transition from preschool to kindergarten. Because Ian will need extra help in the classroom, they begin this process now to ensure he will have everything he needs when he starts school. While part of me is sad my baby boy will be going to school, it’s also a feeling of gratitude. There was a point in time where I wasn’t sure if Ian was going to get to live to see his 5th birthday. That inital conversation of discovering the tumors, not knowing exactly what they were, was extremely terrifying. I had dark, awful thoughts running through my head. But we’re here now. Ian’s made it this far. I’m so incredibly thankful to be sending him to kindergarten in the fall. For that to be a thing that he gets to experience…that’s all I can ask for. For him to just be able to be a kid now, and grow up somewhere in the process.
The light at the end of the tunnel.
