Delayed Intensification Part 2

On Monday of this last week Michael had his blood work done locally to see if his ANC had come up high enough for him to begin the second half of Delayed Intensification. We were encouraged to hear that afternoon that his ANC was at 1450 up from 450 a week prior. 1450 is a solid number for a leukemia patient and well above the threshold for continuing this course of chemo.

So, on Tuesday, Michael and I found ourselves once again on the 7th floor of Mott Children’s Hospital in the outpatient clinic. Michael got his port accessed, and we met briefly with our nurse practitioner, Lynn, before heading down to the 4th floor for a spinal tap. Following the spinal tap, we headed back up to the infusion center on the 7th floor to begin the second half of delayed intensification (DI).

This portion of DI is very similar to the Consolidation course of chemo that Michael went through back in the spring. Just like in Consolidation, Michael was given Cytoxan and Cytarabine through his port. And alo similarly to Consolidation, I had to give Michael a shot of Cytarabine at home on Wednesday, Thursday, and Friday this past week. What is new to us this time around is an oral chemo called Thioguanine that we have been told is very similar to the Mercaptopurine that Michael was on in Consolidation. Michael will take Thioguanine every day for 14 days.

When we were going through Consolidation, the day immediately following the hospital visit was always the hardest for Michael. That is proving to be the case in the second half of DI as well. Michael was pretty wiped out on Wednesday and stayed home from church. The rest of the week was up and down. He battled some mild nausea on most days, but I think part of that was because he wasn’t always drinking his fluids as much as he is supposed to.

Drinking enough fluids has been an ongoing battle for us throughout Michael’s entire treatment. The doctors have told us that he needs to be drinking 2.5 liters of fluids a day to help flush the chemo out of his system. But that’s a lot of fluid to take in every day, especially when your stomach isn’t feeling the greatest. We’ve gone through lots of 7/11 slurpees, flavored waters, and sports drinks over the last several months to try to keep him hydrated.

One aspect of this portion of Michael’s chemo is that his appetite has moderated. During the first half of DI, Michael was on a steroid that turbo charged his already ravenous, teenaged appetite. Michael hit a growth spurt over the course of the last few months and has been eating like a horse. While on the steroid, seconds and thirds were not adequate at dinner time. I finally stopped him one evening when he was helping himself to fifths! While on the steroid, he put on 8 pounds in a single week! But I would rather have him at a healthy 130 lbs. than the 89 lbs. he dropped down to when he was battling pancreatitis. However, with the steroid working its way out of his system and the Cytoxan and Cytarabine curbing his appetite, He has been eating noticeably less, and I expect his weight to be down a bit today.

Today we are back down in Ann Arbor. We will be meeting with Michael’s attending physician Dr. Walling. It’s rare for us to actually have an appointment scheduled with just her. Usually, we meet with our fellow Dr. Delap or our nurse practitioner Lynn. When we see Dr. Delap, she will go over all of Michael’s blood work results with us, examine him, ask if we have any questions, and then step out and get Dr. Walling. We then meet briefly with both doctors before wrapping up the visit. But I’m grateful to be meeting with Dr. Walling regardless for a few reasons. First, she is expecting a child in the very near future and will likely be going on maternity leave in the next week or two. Second, I want to talk to her about Michael going back to school and….attending driver’s ed!

A few weeks ago, when we were meeting with Lynn, she mentioned that Michael’s next course of chemo, Interim Maintenance 2, is typically when most leukemia patients go back to school in person. Interim Maintenance 2 has kind of been a light at the end of our tunnel. We have been told from the beginning that this is the course of chemo when patients are feeling much better and their hair comes back permanently. (Michael has lost his hair once, grown it back, and now in DI is losing it again). We have been told that the chemo in Interim Maintenance 2 is not as intense as some of the other chemo that Michael has been on. However, we will still have to make weekly visits to Mott for 8 weeks during this course. Interim Maintenance 2 will likely start for Michael the first or second week of January.

However, we have some concerns about Michael going back to school during this course. For one, he would be going back to school during peak cold and flu season. We are not sure how much his immune system is going to be compromised and are hesitant to expose him to all of the germs that find their way into a classroom. It is also not exciting to start each of his first 8 weeks back at school a day behind and dealing with make-up work. Before his diagnosis, Michael had gotten to the point where he hated missing school for any reason because he wanted to avoid having to deal with a large amount of make-up work. For all of those reasons, Sarah and I had planned on not sending Michael back to school in-person until he had completed Interim Maintenance 2. At that point, Michael will only be require to visit Mott once a month (for 18 months).

However, one of the realities that we have been dealing with this school year is that online schooling is simply not the same as in person. Sarah and I believe that in at least a couple of his subjects, Michael would benefit significantly from being taught in person.

Another reality is that Michael has reached the point where he is old enough to attend drivers’ education. I am not ready for this! But ready or not, the reality is we will soon come to know the joys of having a teenaged driver in our house. Michael’s school is exploring the idea of offering drivers ed during the last hour of the school day on Tuesdays and Thursdays starting in early January. We have to let his school know today if we are in. Michael is excited about driver’s ed, but he is concerned that Tuesdays are typically his worst day of the week after having had chemo on Mondays.

So, we will be discussing all of this with Dr. Walling today. As I write this, we are sitting in the waiting room on the 7th floor at Mott waiting for our appointment with her. Following the doctor’s visit, Michael will go down to the 4th floor for another spinal tap then head back up to the infusion center on the 7th floor to get Cytarabine through his port. I will be giving him three more Cytarabine shots this week, and then we will be done with that particular drug. The following two weeks of DI will be much lower key with Michael only getting one type of chemo that he has been on several times before: Vincristine. Vincristine has proven to be one of the milder forms of chemo and does not wipe Michael out or nauseate him like many of the others do. However, due to the cumulative effect of the first two weeks of DI, it is expected that Michael’s numbers may bottom out and that he may require transfusions in one or both of the final two weeks of DI. Michael will receive the last chemo infusion of DI three days before Christmas.

Tomorrow is an important day for me. Tomorrow morning, I see the neurosurgeon about the “something” that is on the L1 vertebra in my back that appears to be a small mass. The Lord has given me a peace about this that I cannot explain. To be honest, I haven’t spent a whole lot of time thinking about it over the last few months. I still have three bulged discs in my lower back that are actually giving me some issues, and I am hoping that the surgeon will order physical therapy to address them. But obviously, he will have to decide how to address the “something.” I am grateful that for the last several weeks I have been functional and in relatively little pain. My massage therapist has been a Godsend in keeping me functional.

In the meantime, we continue to take one day at a time and are already enjoying celebrating the birth of our incredible Savior!