6.2.22
One week before scan day. I did our June calendar earlier this week and completely forgot to put his scan on it. Maybe I didn’t forget, maybe I was just trying to block it out for as long as I can. Scan days bring a lot of depression and anxiety in the days leading up to it. I had just spent the weekend before sitting on the couch, unmotivated to do a single thing. I was wrapped up in thinking about people I’ve lost or people I miss. I let my body feel the grief. Got it all out. Talked to my therapist about it on Tuesday. And now here we are, feeling more like myself. Until I remembered what next week is. Panic starts to set in. What’s the scan going to show? What chemo will he be on this time? How often will we have to go? How will this affect Kindergarten? What other side effects are we going to have to juggle? Oh, and who the heck will his doctor be? We found out recently that Ian’s oncologist is leaving the hospital. I don’t have the details yet, but I don’t know what this means for Ian’s care as of right now. Our next steps will be a big decision in his medical treatment.
The uncertainty of things bothers me. I feel like I need to have control over the situation. But this is why we always say “one step at a time” … because sometimes… it’s really all we can do.
6.12.22
My original plan was to write on each day leading up to the scan, but as you can see, there’s a 10-day difference from the post above to this one. Not that I’m complaining about that. I’ve been keeping myself busy, which I think actually helped me deal with this scan a little bit better compared to previous scans. Last Friday, I went to a concert to see my favorite artist, last Saturday I got together with some friends for a game night, last Sunday we had a family day at Round Hill, and the remainder of the week leading up to scan day I would work and then keep myself busy either with the kids or cleaning the house. Scan day came and went. And we did actually get good news: Ian’s tumors showed no growth and are considered stable at this time. During our last scan, we were told there was marginal growth, but because Ian’s tumors grow slowly, there was no need to jump the gun on starting chemo again so soon after his last regiment. However, we were warned probably after this scan, we would need to. Because the scans were stable, we were given the green light to wait until September’s scan. This diagnosis is so unpredictable. You never know how things are going to turn out. I feel extremely thankful that we get to have a chemo-free summer and get our little man ready for kindergarten without that factor being involved at this time.
We do still have other things going on at this time. We still have to monitor Ian for any sign of tumor growth. This can include a number of things including seizures, vision problems, headaches, throwing up, etc. As of today, Ian’s last seizure was April 22, so we are almost 2 months without. We have a follow up with Neurology at the end of July to discuss Ian’s medications and recent behavior. He recently got discharged from his outpatient services (he received speech and occupational therapy) because he was being non-compliant for weeks. He would spit, throw things, kick, just did not comply with what he needed to be doing. Both therapists agreed that it was becoming unbeneficial for Ian to continue services with them if they were unable to get him to cooperate. Anyone we have tried to talk to about Ian’s behavior seems to shrug it off as him being 4. But with kindergarten around the corner, we need him to be able to comply with what is expected of him. His behavior isn’t “just here and there when he doesn’t get his way”- it is all the time he seems to be this way. He doesn’t seem to be… just happy. It’s hard to say if this is a tumor issue, a medication issue, an Autism issue, or something else entirely. The last 2 weeks or so, Ian has seemed to improve on his behavior (why the sudden switch, I don’t know), but we are now noticing more so incidents where he will randomly burst out crying. I’m talking real tears streaming down his face during play time or while watching a movie. Ian has gotten pretty good about telling us what is wrong, but during these more random events, he doesn’t tell us. His last episode, he started crying and then would start laughing. Crying. Then laughing. I don’t know too many kids who can just cry real tears on the spot, so all of this is concerning to me how quickly his mood seems to shift. Our oncologist showed us that Ian does have a tumor on or near the pituitary gland (I honestly don’t remember). The pituitary gland is responsible for regulating your emotions. Because of the concern with Ian regulating his, we are being referred to an endocrinologist to test Ian’s levels. Another specialist to add to our ever-growing list.
When we go back in September, we will be following up with a new oncologist. Ours is leaving, and when we asked where he was going so that we could consider following him, we found out that he would no longer be practicing altogether. Ian’s oncologist was on our case since day 1. I remember him coming in on July 4, the day after we were admitted and after they found the tumors, but I couldn’t tell you a single thing he said. My mind was spinning. But although I didn’t remember his words, I remember his kindness and his compassion. With Mike working at the cancer center, he asked the doctors there who the best person would be, and they told us the one who was assigned to us is the guy we want. We stuck with him the last three years, and he did not disappoint. I thank him for getting Ian where he is today. With the rareness of Ian’s condition, (the type, the placement, the number of tumors, etc.) I’m not sure if anyone would have fought for him the way our doctor did. He asked us if we were okay for Ian to participate in studies, and of course we agreed to help the next family to have to go through this nightmare. He kept looking for the why for Ian, and never gave up on us. Even now with him leaving, he gave us his personal contact information to keep in touch because he feels so invested in our son. I couldn’t ask for anyone better to take care of him. Although it will be scary to transition our care, I’ve heard from a lot of people that our new doctor is great, and so I feel like we’re now taking that plunge with more confidence.
I kept busy after the scan too, which is why I didn’t around to writing this until now. Keeping busy, surrounding myself with friends and family, focusing on self-care, has all helped tremendously with my depression and anxiety. We got to celebrate my nephew’s 5th birthday yesterday (he’s still in remission and doing absolutely amazing!) Next month, Ian turns 5 as well. There was a time I didn’t think we would get to see this day, and I am beyond grateful it’s here (even though I’m also sad how fast he is growing up).
We’re all on a carnival ride, never knowing where we’ll go next. It’s slowly turning, but then you blink, and your life changes forever.
