(In my mind, the title of this post is to be said in a robot voice)
I suppose that this is a feature of regular, non-cancer-life parenthood that is only magnified by our situation: Elsa was diagnosed with leukemia yesterday. Yesterday morning, I collapsed on the floor outside of the Operating Room and had to be scraped up and forced to walk slowly down the hallway as they cut her open. Then again, we have been doing this for years. Decades, even. My whole life, I have been a mom to a kid with cancer, even though she was diagnosed yesterday. Is someone studying this phenomenon?
Monday, we had our first clinic visit of Long-Term Maintenance. For leukemia parents, that is a pretty big deal. A sign that your kid has survived the initial half-year onslaught (for us, it was 8.5 months because of routine delays) and gets to pass “Go,” for another trip around the board. This new phase will last for the next 546 days (Thank you Countdown Clock for helping me to ever quantify the passage of time in my life). Her ANC was 1500ish, so she was cleared for her IV vincristine and spinal methotrexate. She also started a five-day course of steroids and a daily, oral chemotherapy called 6-MP. Only 546 more doses! Next week, we will start giving her weekly doses of oral methotrexate as well. Phew. The daily medication routine has gotten pretty epic.
Of all the things they do to her at clinic, including putting needles in her spine and chest wall, the only thing that she complains about is the numbing cream they put on her back, prior to the spinal tap. It’s the same cream she happily accepts on her port in the morning to prepare her for being accessed, but, for whatever reason, the cold cream on her back is an insult. I’m always amused that THAT is the worst part of the day:
Her spinal was scheduled for 2PM because of the slow-as-molasses (gosh, I love that phrase!) pace of the lab/pharmacy. By the time we get her counts back and her chemo prepared, the day has passed us by. Of course, we had our requisite hour spent sitting on the edge of the sink, playing in our “pool.” Long about 1PM, after 5 hours without any food/drink/nap, this is the only activity that keeps her (and subsequently, me) from totally losing her mind.
I’m obsessed with taking pictures of her with the reflection in the towel dispenser. Never gets old to me.
I also can’t get enough of the silly drunk faces she makes as she wakes up from her versed/ketamine dreams.
We also got some really excellent news about our randomization in the COG-AALL 0932 clinical trial. I’ll try to make this brief (I will probably fail) because it is wildly boring to anyone not actually going through this. Also, whatever I am spewing here is just my interpretation of what I have read. I’m far from an expert on this stuff, so if you are reading this because you are the parent of a kid with ALL, please check out some of the links I have posted (up there at the top) for any expert info.
The standard of care for pediatric ALL treatment varies somewhat depending on where you are treated. Some hospitals, like St. Judes and Boston Children’s (I think) and Children’s Hospital of Pennsylvania, have their own treatment protocols. For the most part, though, kids with ALL are treated with the standard COG (Children’s Oncology Group) protocol. For long-term maintenance, that standard of care includes once monthly steroid/vincristine pulses, once every three months spinal methotrexate, daily oral 6-MP and weekly oral methotrexate. The prognosis for these average-risk kids is somewhere over 85%. The treatment, though, is pretty toxic and a lot of kids end up with long-term neuropathy or other complications from the steroids/vincristine. So, we are enrolled in a huge clinical trial sponsored by the COG that is looking at trying to decrease the toxicity of treatment while still maintaining such high cure rates. From what I understand, a lot of European countries (Germany, especially) have found that children can get WAY less vincristine/steroids or NONE at all and still have equal EFS (event-free survival) rates. We have certainly seen short-term toxicity with Elsa, including neuropathy from the vincristine (for which she requires Neurontin daily) and a lot of pain/limping/awfullness from the steroids. Deep in my heart of hearts, I believe that this treatment is more toxic than necessary for these average-risk kids, so I am happy to have Elsa enrolled in this trial.
So what is our good news!? We were randomized to the arm of the clinical trial that administers the LEAST amount of chemotherapy: Arm C! She will still get the standard doses of all oral chemo and spinal chemo, but she will only be subjected to vincristine/steroids every THREE months. There is definitely room for some worry – I know that, perhaps you are thinking, “Is it OK to get LESS chemo?” Though we don’t know the answer for sure, there is definitely research saying, “Yes.” This clinical trial is based on quite a lot of research that says that, in Elsa’s particular risk category, it is safe to administer less vincristine/steroids. I think that I will always have twinges of doubt, wondering if, perhaps we should have dropped off study and gone with the standard of care. I wouldn’t be me if I didn’t have some twinges of doubt about something. Like I said though, I believe in this Arm of the protocol and, though the stakes are big (huge, in fact. MONUMENTAL, really), John and I agree that we are happy with our placement.
THREEEEEE MOOOOOONNNNNTTTTHHHS! Considering we have been on basically weekly IV chemo for the past 8.5 months, this is a huge, huge, huge change of pace for us. When they told us we didn’t have to come back for another two weeks (just to have her blood counts checked), I actually felt a little terrified. Two weeks without knowing her blood counts?! How will I know if it is safe to take her to the library!? To the grocery store? Once her counts stabilize, we will go down to monthly blood count checks: again, terrifying. All terror aside (because I wouldn’t be me if there wasn’t a little terror sprinkled on top), this is wonderful news and exactly what we had hoped for.
Now we just need to put our heads down and endure this steroid week – it’s shaping up to be unpleasant but a mere fraction of the steroid hell we’ve lived in the past. Our supplies of guacamole and goldfish are reinforced and I’m ready to run on just a couple of hours of sleep come Thursday-Saturday.
Maintenance Sequence Initiated!