Interim Maintenance- a technical review

Interim Maintenance is 56 days. It is the fourth phase of frontline treatment. Frontline is the initial portion of the 2-3 year treatment for acute lymphoblastic leukemia.

Days Spent Inpatient:

NONE! (oh sweet baby Jesus!) The PTSD of Induction is actually waning….

Medical details:

• 1 intrathecal chemo doses via lumbar puncture
• 5 doses of IV administered Chemo, Vincristine and Methotrexate
• During Interim Maintenance, IV Methotrexate is escalated based on blood results (More below). Beau began at 50mg, and ended at 300 mg.
• 1 ultrasound to follow-up on the DVT (blood clot)
• 5 clinic visits, 1 doctor appointment

Symptoms we had:

• Diarrhea- Let’s get personal. After the first and second IV Methotrexate dose Beau needed to have a couple urgent trips to the bathroom. You can imagine what a neon yellow chemo looks like tearing through your system, especially in the context of a dingy highway gas station. It was lovely. Thankfully, it came and went.
• Fatigue- The afternoon following his clinic appointment, Beau was more tired that normal- perhaps going to bed early or watching some extra t.v.
• Vomit- Oh hey dreaded chemo symptom, we’ve been waiting for you. Beaudin threw up daily for 4 days after his final, and highest, dose of IV Methotrexate (300mg). We called the on-call doc since it was on the weekend and got a prescription for zofran and he took 4 doses. It seemed to help a couple of times, and not help the others.
  • Haha, psyche! We were so sure, so, so very sure he’d get sick from this. Just waiting for nausea related to the escalating methotrexate that we attributed his vomiting at the Colorado Rockies baseball game to that. We gave him zofran and let him lay down on us during the game- as he demanded we not leave. Turns out, in the days following the rest of us came down with the stomach flu- as last time I checked, Methotrexate nausea isn’t contagious. Oh hindsight. We were so sure he would have that symptom, that we missed the fact he was just sick and just spreading the stomach flu to all in his path.

Symptoms we missed:

• Hair loss- Beau’s hair is still going strong. It’s actually so long that he needs a haircut. The vast majority of kids who have not lost it by now will loose it within the first two weeks of the next phase thanks to the specific chemo, Doxorubicon, so I imagine our days are numbered.
• Constipation- The Vincristine chemo is known for this and we have managed to bypass it. We use Sienna tea every couple days if things aren’t feeling regular, but mostly just push hydration and raw vegetables.
• Headaches- Beau’s headache symptoms normally accompany the intrathecal chemo via lumbar puncture, and since we only had one of those this phase, we didn’t even notice that as a symptom.

Hardest part:

During Interim Maintenance the IV methotrexate (MTX) is escalated based on the patients ability to retain high enough blood counts for escalation. As such, every 9 days, blood is taken and if the ANC is above 1000 (I think, don’t quote me on this, it could be 750) then the dose for Day 10 is escalated by 50mg of MTX. If the blood levels are not high enough to pass for escalation, then you have a 4 day hold and test again. If the levels are still very low you skip the dose altogether, if they are in the middle you get the dose from the previous amount. At the beginning of the phase, our nurse said that 50% of kids can’t escalate more than half-way, 25% can’t escalate at all, and then 25% escalate the whole phase.

So, every 9 days we would get Beau’s blood drawn and await his numbers. This process was the hardest part of the whole month. Since December we have lived in a weird space of knowing everything there is to know about ANC, WBC, Hemoglobin, BUN ratio, etc. Beau’s blood test results have been central to “how we are doing”. And during that time, we have hope for “good levels.” We have prayed his ANC would rise, and have prayed his hemoglobin would not drop, we have prayed his liver and kidneys would continue chugging through the toxicity of chemo with reckless abandon. And they have.

Beau’s body has been kicking ass and taking names in this process. And it’s not like therefor we haven’t needed to worry. Oh trust me, there has been boat loads of worry. It’s just that inside of all the worry, Beau’s blood levels have been reassuring and kind of a peaceful thread of hope.

Well, enter Interim Maintenance methotrexate escalation. Those same strong blood levels get us, more methotrexate. Congratulations.

What? Wait! So, we don’t want high levels. We don’t want his ANC to be strong? Oh we do? But if it is, it means higher MTX?…and higher MTX means more toxicity, and more toxicity means more vomit. Ok, wait, what?

So, Beau escalated the whole way through. His ANC remained high enough to go to school, the rest of his blood levels similar to that of a non-cancer patient. And for that we are thankful. period. Here I am reminding myself that we are thankful.

We are thankful, Betsy, we are thankful.

And then here I am detailing that while gratitude is a part of it, there is also grief and confusion, sadness, that a strong immune system means more chemo drugs.

This is cancer. Hoping for one thing, getting it and wondering if it was the right thing to hope for. Hoping for one thing, getting it and wishing you’d hoped for something else. Realizing quickly that the “something else” would have had a whole host of costs and that maybe what you got was not that bad. Hoping for one thing, getting it and wishing you could just sit inside gratitude for GETTING WHAT YOU HOPED FOR! but having your mind wander and lust after “what might have been,” inevitably leading back to the deep, dark thoughts of: “what I really hoped for was that cancer wouldn’t have happened at all.”

Biggest Surprise:

SCHOOL– Beau went back to school, consistently! YAHOO! Once cold & flu season was, mostly, behind us, Beau was able to start attending school again. It was a blessing for everyone to get back in a rhythm in this area. For most of April and May he attended half days for a wide variety of reasons. His energy levels oscillated high and low, healthier lunches and supplements can be served at home than in a lunchbox, and also Jude was collected from Pre-K at half-day and there is only so much pick-up and drop-off coordination that I can manage. This past week, the last full week of school, Beau has attended all day, every day. Wow. Here we are. I am thankful you didn’t tell me January 17th that he wouldn’t be back to a full day until May 16th, because I wouldn’t have been able to prepare for that. One day at a time.

REVIEW- The other day we met with a new naturopathic oncologist who is joining our care team to help us integrate some different things into Beaudin’s care. To prepare for our meeting with her I had to fill out some paperwork including relevant “list medical information, procedures, or medicines from the last 12 months.” HA! This took me hours. And while I was coordinating this info, most of which I have on hand and have been looking at daily for 5 months, I thought to myself, “holy crap, we have done so much. Had so much. Experienced so much. SURVIVED SO MUCH.” During the day in and day out of cancer it is best to not look up very often. The waves of overwhelm are always right there and to get from day to day, it is easier, necessary, to not really look ahead to the future. This is worthy of a whole lot of words, but for now, I will just say, “heads down, daily bread” has been our mantra. In looking back, I felt proud, tired, brave, and accomplished. We’ve made it. We are going to make it.

Other relevancies:

Beau spent his birthday at clinic- Happy Birthday to you Beau, have some chemo. Alas, it was actually a very sweet and tender day. Gramps was visiting from Florida and getting to see Beau in a far better state than he had previously seen him in January. The nurses and doctors came to Beau’s room and sang a robust “Happy Birthday” and then gifted him a lego set AND a birthday cake- full of gluten AND food coloring (I even let him eat it, I mean, can you imagine his surprise!) It felt like a family birthday party. In the most unexpected ways, the cancer clinic on floor 7 was a beautiful place to celebrate the LIFE of this sweet kid.