Happy New Year! Luke’s CT was clear. He decided on clear scan octopus instead of clear scan carrot cake this time. We almost made carrot cake too, but he decided that should wait until after his MRI. He ordered an octopus from Heinen’s and researched how he wanted to prepare it. He/we last made octopus in 2014. This guy was much bigger than those were and was kind of intimidating. Luke ended up making grilled octopus with a lemon vinaigrette and served it with Santorini fava (although they weren’t grown on Santorini) and a fennel, orange and olive salad. He didn’t eat seafood for most of the time after becoming a vegetarian at 9, but he has opened himself up to eating wild caught seafood in the last year or so. I guess he’s officially a pescetarian now, not a vegetarian.
Luke has talked a little more lately about stopping maintenance, but he was on board with starting his 13th month last week. We heard from his doctor a couple of months ago that the Children’s Oncology Group is in the process of amending some rhabdo protocols to add 6 months of maintenance at the end. (The COG conducts trials and sets childhood cancer treatment protocols for member hospitals.) At the Memorial Sloan Kettering doctor’s recommendation, our plan has been to shoot for 24 months.
Luke had just about every rhabdo strike (risk factor) against him at diagnosis. ARMS, primary tumor in an extremity, age >10, multiple distant metastases, bone marrow involvement, all combining to lower his survival chances to the low single digits. Most kids respond well to preliminary treatment, but but then the challenge is to keep the beast away. We’ve heard “when it comes back” from experts. I know I’ll lose sleep if and when we decide to stop maintenance, even if it’s years and years down the road. Of course, I lose sleep now too, hoping that that decision remains ours and a change isn’t dictated by a relapse.
Should we stop? Should we continue? He tolerates it well, but his life is far from normal with 3-5 hour appointments every week. The drug that Luke had to take a break from for the surgery is not included in the COG’s new maintenance recommendation. Should we continue maintenance, but stop that drug because he wouldn’t be getting it if he started today? At what point is the potential cumulative toxicity of any or all of the drugs a greater risk than the chance of the rhabdo coming back? Has he just gotten lucky with his particular beast and might have gotten to this point without maintenance? We chatted with the doctor before she sent the chemo order down to the pharmacy last week and again yesterday with his main oncologist, but ultimately the decisions are up to us and to Luke. She did say that she watches for signs that his bone marrow is getting worn out from all of the treatment (ANC, platelet count and hemoglobin have all been consistently pretty good) and of course for other signs of toxicity, and that she will let us know if there are signs that he should stop. She also said she knows that she would not recommend going past 24 months, so there goes my plan of keeping him on it until he’s 80.
So much extra stress lately coming from insurance issues. Long, long story involving healthcare. gov, CHIP, our fine state of Illinois and more, but Luke couldn’t get his chemo infusions yesterday (unless we were prepared to possibly pay have to pay for it ourselves). Oh, and Paul is jobless as of the end of the year. He’s got a few leads, and we’re hopeful that he’ll land something soon.
Going into the new year, I’ve been feeling grateful, but also heavy-hearted. It’s so hard to think of the rhabdo families (and of course other families) for whom 2018 contains the last memories with their child. We’re remembering Harmony, James, Finn, Nathan, Beau, Bobby, Lauren, Adam, Ryan, Holly, Aurora, Quinten, Jake, Garrett, Lorenzo who passed away in 2018. Those names are in my head and my heart from the support group, but I know there are more. We’re also sending extra love and hope to Nathaniel and Nikko who are fighting really hard right now.
Thank you all for every thought, every prayer, every gesture since August of 2016. We are so very grateful for all of the love and support for our little guy and for our family.