Interim Maintenaince I

We started a new phase the day before Thanksgiving, even though the last day of Consolidation is Thanksgiving. We would have begun Friday; but who wants a cancer clinic visit in the middle of the Holiday weekend? So we overlapped a couple days.

We met Dr. Afyfy who examined Emma, answered questions, and explained the next protocol.

Consolidation had a daily oral chemotherapy and several lumbar punctures. Emma needed her anti-nausea Zofran. One morning she took the last Zofran dose in the bottle, and I called the pharmacy for a refill. When I talked to the Pharmacy tech a few hours later, she apologized; but my insurance wouldn't cover a refill until tomorrow. We could pay out-of-pocket, though.

That's a $230 bottle of 50 miligrams of pharmaceutical miracle right there. We waited. She didn't get her bedtime dose. At 4:00 am she threw up. At 4:10 am I called the pharmacy (grateful for 24-hour Walgreens) and they ran the insurance again. It cleared as payable, so at 4:30 I was at the Walgreen's drive-thru window.

Other than those dramatics and the complete unbalance in her digestive system, we managed consolidation relatively smoothly.

The first Interim Maintenance (IM1) doesn't have any home chemo at home; so I will have a heart attack every Monday for the next eight weeks when I realize that she hasn't had her Septra and it's already lunchtime. Septra is a drug with crazy potential side effects that keeps her from getting pneumonia. Chemo suppresses the body's ability to prevent a certain strain of horrible pneumonia that can easily kill an immunocompromised kid. We take it Mondays and Tuesdays for the duration of treatment.

What IM1 does have: Clinic appointments every 10 days, working around weekends... depending on her blood counts. It will not be really easy to plan that out in advance on a calendar.

In those appointments, we will have vincristine and methotrexate. The methotrexate dose will escalate each time. She will have one lumbar puncture in the middle of the phase.

IM1 syringe stack

If she makes her counts every single time, it is an 8 week protocol. When she misses counts, she may proceed without increasing the methotrexate, or she may delay 4 days and do counts again. So minimum 8 weeks and possibly a bit longer.

The photo was when the nurse sat down to administer the first batch of chemo for IM1. To be fair, half of those are saline flushes; but still. You might get an idea of the advantage to having a port rather than sticking that all in by needle. Further, Vincristine is really damaging to tissue and has to be going into blood, not tissue. After all, we want to kill the cancer, not the kid. Yay ports!

And just as we were going to leave, Stuart Edge brought his magic movie making, so we stuck around to get in on a youtube video, which I shared just before this entry.

Chemo Makes Her Sick

When we started out, the most expensive prescription we brought home was zofran, to combat nausea. I was a little irritated that we had a $215 bottle of medication that she didn't need and wasn't using.

Consolidation features mercaptopurine (MP-6), which is a chemotherapy that is a bit different from the varieties we had during induction. We are now using the zofran and I'm grateful to have this expensive drug in my chemo box.

As we know already, we were in the ER Monday and Tuesday night. Thursday I took our 2-year old boy to Primary Children's for a follow-up on his cataract and scheduled an exam under anesthesia for him right before Christmas.

Friday, my fourth trip to Primaries in a week, we met another Oncologist, Jennifer A Wright. Hehe. That's my sister's name. Emma's ANC keeps getting better and Emma was cleared to go to church. [YIPEE]

Her nearly-weekly lumbar puncture (LP) is a lot like an epidural. Kids don't like needles in their backs and are prone to scream and squirm, so to solve this difficulty, they do LPs under light anesthesia. I left the procedure room with her sleeping and sat down in the hall and - for the first time really since all this started - had a good sobbing cry.

Emma sailed through like a rock star. The anesthesia was a bit heavier than usual and she was pretty doped for the rest of the day. Also, we are working on balancing the laxative; is it balanced if you have both constipation and diarrhea at once? Ah what a miracle it is that human digestive systems usually just work.

Largely, though, she is doing well and usually in good spirits. I love to see that girl smile. Maybe it's with every kid, but the doctors and nurses act like they won some bet or contest to get to see Emma. Doug, Emma's primary oncologist, got after Dr. Wright for snatching his Emma exam when he was getting out of a meeting. Even though it may be part of their approach, I feel like Emma is a favorite for her smiles and giggles.

What it Means

I will admit that I didn't dance the proper jig upon getting the news that Emma is cancer free. It seems that a person who doesn't have cancer should not have 2 1/2 years of cancer treatment in her future.

What I know about cancer is pretty limited. What I know about childhood leukemia as really not very much. I'm learning, though, and will continue to learn. Today we found out what's next in a little more detail.

Emma is in a normal risk category. Her symptoms at diagnosis were common. Her reactions have been similar to textbook. She has so far presented a typical case.

They expect to effectively eliminate the cancer in the first 28 days. They did that. There have been enough kids with ALL over the past 60 years to do a lot of research and define the drugs and protocols that work best. They are still tweaking and fine-tuning; but they have a pretty good idea that "no cancer" isn't the final word. They must destroy every single last cancer cell, or it will come back with gusto.

The next phase is consolidation. 28 days of oral chemotherapy as well as weekly clinic visits for intrathecal chemotherapy (chemo given through a lumbar puncture into her spinal fluid.)

After that is 8 weeks of interim maintenance, then 4 weeks of delayed intensification, and then 8 more weeks of interim maintenance. Count that up and you'll get roughly 6 months.

If all goes well, then early summer will find Emma in maintenance, which runs for 2 years... according to the textbooks, anyway.

I have information that truly makes me feel hopeful; but Emma has a long way yet to go. I'm so glad that she is feeling better. Each day is a bit better. She still tires pretty easily. She still limps. She is happier, though, and clearly feels so much better than she has.