Delayed Intensification 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! Thankfully.
Medical details:
- 2 intrathecal chemo doses via lumbar puncture
- 8 doses of IV administered Chemo, Vincristine, Pegaspargase, Cyclophosphamide, Doxorubicin.
- 8 subcutaneous injections of chemo, Cytarabine (ARAC)
- 14 Days of oral chemo, Thioguanine.
- 1 weeks spent neutropenic.
- 7 clinic visits, 8 local lab blood draws
Symptoms we had:
- Hair Loss- it finally happened, as they all said it would. After Beau’s 3rd and final dose of Doxorubicin, his hair thinned to bald. We shaved it again as it was coming out everywhere and within 2-3 days it was gone.
- Fatigue- Damn steroids. They really take it out of Beau. During his 2, 5-day steroid pulses his fatigue was significant. Any time you were not asking him to do something specific, you would find him laying on the couch, floor, bed, etc.
- Allergic Reaction to PEG- on Day 4 of DI we had our second (and final!) dose of Pegaspargase (PEG) chemo. It is known to cause reaction in 2/3 of patients. Beau had a reaction, but it was actually due to the high level of ammonia released quickly into the bloodstream when PEG is administered. It mimics a true allergic reaction to the actual chemo, but after a high dose of Benadryl and a saline bolus, they were able to readminister. Because of the reaction, we had to get his antibody levels measures at Day 7, 14 post administration to ensure the medicne took hold and that his body didn’t just churn it out immediately. Thankfully, his levels showed the PEG did its job.
Symptoms we missed:
- Infection- One of the biggest worries about Delayed Intensification is the time during weeks 6-8 when blood counts are low. Low ANC specifically, increases risk of infection. Infection means fever, fever means urgent trip to the ER. Thankfully, we did not have an infection during this time even though he was neutropenic for around 14 days (ANC 0+/-).
- Nausea- I guess you could say we missed this, although lack of appetite is sometimes thought to be nausea. Beau did not have any distinct nausea during DI. We followed closely the protocol from our naturopathic oncologist- lots of ginger, accupuncture, sea band bracelets, and more. When he has low ANC he has very low appetite, but this could also be nausea. Our team told us that some kids will say they are “not nauseas” because they haven’t actually thrown-up, but the sensation they are having that keeps them from eating is what adults would call nausea.
Hardest part:
The waiting. Waiting for a fever. Waiting for an infection. Waiting for an emergency trip to the ER. I found myself thinking, lets just get the infection and get it over with, because the suspense of waiting felt so exhausting. It is like walking around a dark room, knowing that someone is waiting to jump to jump out and scream “boo!”.
Biggest Surprise:
Most of me feels an intense need to wallow in how terrible DI was. It was hard and exhausting, mainly from an adrenal standpoint as detailed above. It was long and tiresome and I am just glad its over. But if I have to search out a surprise it would be how well Beau did with the Cytarabine (ARAC) chemo that was administered via infusion. I was quite hesitant at how he would react to having another semi-permanent placement, but he did fine. And then each night when we did the injection his only complaint was that it “kind of stung”, which he said without much emotion, indicating that is was a minor sensation at most. He has come so far with his confidence and endurance over injections, needles, pokes, and prods. And I wish I had it in me to sing that as a praise, but right now it just feels disheartening that he has had to endure so much.
One other surprise that is worth mentioning is that Josh and I went on more dates during DI then we had been on in the last 8 months combined. How?? I don’t even know. Well, I kind of know- we got a stellar, consistent babysitter (Hi Alli! <3) And it didn’t exactly feel restful, because even our dates were thick with cancer thoughts, conversations, concerns. But there we were, outside of our four walls, enjoying fresh air and kid-free time.
Other relevancies:
Delayed Intensification is over. THANK GOD!
And yet, frontline continues. I was shocked at my lack of relief when DI ended. We had been anticipating all things DI since diagnosis in January. Most conversations were framed as “before DI” or “after DI”. The doctors detailed all struggle as how it would compare to DI. And so to be in the thick of DI, which was as hard and exhausting as we expected, and then to be on the other side of DI and still have miles to go…well, it was hard. I had naive thoughts that I would end DI and breath a sigh of relief and then coast into the sunset. But alas, turns out the on the other side of DI is yet another phase of Frontline, Interim Maintenance II. And although IM2 has proven to be infinitely easier than DI, it’s still chemo. No rest for the weary.
The Heavy Wait 