Busted -- Again

Seriously?

Seriously.

The month has been fairly uneventful for Emma as far as cancer is concerned. She finished the second round of interim maintenance like a super star. Her hair is coming in like soft baby fluff.

Earlier today she got a blood draw and her counts are good enough to start maintenance tomorrow. It will be a pretty big day... we'll learn which track of the study she will be on. That determines the dosing and timing of her chemo over the next couple years.

This afternoon, though, Emma broke her leg.

She was playing, put her right foot into the recliner between the footrest and seat, then stepped on the footrest and put it down on her own leg, fell over onto it adding pressure, and, well...

Screaming ensued. Emma hasn't really reacted to pain much since cancer; she just gets along with stuff that she can handle in a way that is atypical for a 5-year old. The screaming didn't go away and sounded hurt, rather than offended. I was pretty quick to decide on a visit to the after hours kid care where they are beginning to recognize us. The x-ray shows a busted tibia.

She came home with a splint. Tomorrow while we are already at Primary Children's for clinic and a lumbar puncture, we'll see the orthopedist as well.

And here is another great picture of Emma's photo shoot in February because she's so stinkin' cute.

In clinic

A month has passed since my last post. 

Emma is doing great. The cast came off yesterday. 

There isn't much to report about the month. Today she had both Methotrexate  and Vincristine by IV and also intrathecal methotrexate. Her ANC is 1900 and she has gone to church. The little bit of hair is starting to grow.

Initially, there was so much to say. Cancer was such a shocking change to our lives and presented such a paradigm shift. Now a month has passed with not much. This is normal, now.

I have started reading David and Goliath by Malcolm Gladwell. It contains a chapter about the pioneering oncologist who developed much of the protocol that Emma is taking. Truly fascinating and horrifying and empowering to learn.

I mentioned it to Doug, Emma's oncologist, and he recommended another book, The Emperor of all Maladies. 

I couldn't emotionally take reading about cancer a few months ago; but now I am eager to get the book Doug recommends. 

Busted

Emma broke her arm this weekend. Hairline fracture on both forearm bones of her left hand near the wrist. It isn't a growth plate or a compound fracture. It would heal fine without a cast if she would avoid straining and pressuring it while it is healing; but she is 5. It gets a cast.

Also, here's a great picture of Emma. A friend suggested we get some professional photos done when she lost her hair, and I may start dropping those in from time to time.

Emma started Interim Maintenance part 2 on Tuesday. She had a lumbar puncture with some intrathecal methotrexate, and she had some I.V. Vincristine. We go back Friday for an increased dose. Interim Maintenance 2 is similar to IM1 in that they accelerate the dose until we reach her highest tolerance level or until we hit day 57.

Each dose will be count dependent, therefore, to determine if she is reaching her tolerance levels for the drugs.

Finishing Interim Maintenance 1

Emma had a clinic visit today to finish Interim Maintenance. I forgot the numbing cream until we were in our room, so it only had 15 minutes to work before Jessica used her mad ninja port access skills. Without sufficient numbing, it's a pinch and a push; but Emma handled it well.

Doug and Dr. Engle both explained the next phase: delayed intensification. Delayed intensification is has a first part that mimics induction and a second part that mimics consolidation.

For now, though, Emma got her last does of interim maintenance drugs: IV vincristine and IV methotrexate. Her labs were great and she looks good.

Goals Update

First off, Clinic on Friday was pretty good. We love Doug. We love Dr. Engle. We are so happy that those two are Emma's primary doctors and we are glad when clinic days are Friday. Also, Daddy got to come to clinic, which is a real treat.

Dr. Engle explained about the Methotrexate IV. He said that some kids' counts crash with the first IV methotrexate and the body figures out how to process it. Some tolerate all the following doses through the rest of treatment; just the first dose shocks the system. The goal with the increasing dose over two months is to get to the highest point that the patient can tolerate - to make them sick.

That's chemo's job: to make you sick. It is killing the cells that spread cancer. Once the body figures out how to metabolize the chemo, they escalate.

Emma is enrolled in a lot of cancer studies. One through Huntsman Cancer Institute is mapping the gene sequence of Emma and Clinton and me. Then they can compare Emma's DNA with her parents' DNA and see what there is to learn about it. Are there genetic factors? Did her DNA mutate? Can they find a cause for leukemia somewhere in the genetic code? Julie from Huntsman came to draw blood from Clinton and me, since that hadn't yet been done.

I cringe at blood draws. Julie had to poke Clinton twice, and he laughed during his blood draw. There's a genetic tie: we now can guess why Emma laughs in the face of needles.

Our buddy Maddie was in the infusion room getting some blood, so we got to chat with her and her mom. While I was talking, our nurse Kristin employed her mad ninja skills to get all Emma's chemo in and her port de-accessed without me noticing.

Another buddy, Braelyn, was inpatient with fever and low ANC, so we dropped in to visit them, too.

Cancer isn't necessarily a social thing; but we're making friends.

Back in September when Emma was diagnosed, we made some goals.

About a week after we brought Emma home from the hospital, we stuck a white board up in the kitchen. I'm not a schedule keeper. I don't take my vitamins on time. If it weren't for school being so consistent (imagine: they start at the same time every single day. Weird.) we would not do anything according to a schedule. Chemo has to be administered on a schedule.

Along the top of the white board I distilled our four goals for Emma's cancer journey. I can't control how Emma handles treatment. I can't personally prevent fevers, complications, relapse, or any of the frightening possibilities. There is a lot outside our control.

We do get a say in whether our family pulls apart or whether we grow together. Clinton and I get to decide whether we will join a horrifying statistic - 80% of parents of cancer kids get divorced. That's a mind-blowingly unbelievable statistic.

Also, a lot of people going through serious major stresses frequently distance themselves from God. To paraphrase Jeffrey R. Holland, when storms rage and the sea is choppy, don't get out of the boat.

Cancer takes a lot of casualties beyond physical lives. It doesn't just kill, it leaves a mess in its wake. The fabulous doctors and nurses are responsible to fight cancer in Emma; and Emma's team fights the collateral damage that it causes.

Clinton and I are going out a couple times a month, and we're talking a lot about our feelings, our relationship, and keeping tabs on each other. We are making scheduled one-on-one time with Lizzy and Tommy. Caleb, being 10 months, gets an appropriate level of baby snuggling. We're trying to double down on faith-building priorities, especially since Clinton and I have to take turns frequently staying home with Emma when counts are low.

We're still focused on these goals we set in the hospital in September.

All quiet

Interim maintenance is a bit quiet because appointments are only scheduled every 10 days. It has been one week since Emma's last treatment. Not much to report.

On Friday she complained a bit of kidney pain, so we took her to the lab to check for a UTI. While we were there, I wanted a blood count since it had been, like, three days.

Seriously, I really want to know whether she is picking up again or if she is still neutropenic (low ANC, low immunity.) The lab has a standing order to give Emma a CBC any time I walk in and ask, because it's easier than ordering a blood test every week or two.

No UTI. Not much ANC; it's at 100. It was 300 on Tuesday and 100 the previous Friday.

I am going to relate some of the history here, and somebody else will probably tell you a more accurate story; but this is how I understand it.

Leukemia used to be a death sentence, usually with 6-8 weeks left to say goodbye.

In the late 50s and early 60s, a couple doctors were ridiculed, mocked, harassed, and heckled for interfering with leukemic kids' last days. Those doctors developed an induction phase - treatment that would put kids into remission within about a month.

By the 1970s, most kids went into remission, but about 90% would eventually relapse; but they finally had a chance, and even with relapse, they pushed back the cancer.

In the 1980s, they had radiation treatment and some of the other courses. At some point they figured out how to deliver chemo to the cerebral spinal fluid without radiating kids' brains, and that's what the intrathecal methotrexate is all about. We like this development a lot.

Now, kids like Emma get into remission in the first month, or pretty close thereafter. They spend the next 3 to 3 1/2 years reducing the incidence of relapse.

93% of pediatric ALL cases survive. Some relapse and fight through bone marrow transplants. Some get extremely sick through the process. There is often a strong reaction to one or another medication. Some get horrid infections and secondary complications. Some have to learn to eat again, to walk again. Some lose hearing. Some make it through with minor complications.

Our perspective has shifted to include an understanding of what could befall a kid with leukemia.

Emma has been fairly isolated for a week and a half since her ANC went below 500, and she will continue to stay out of groups. Even during the Christmas Holiday, her counts determine whether she can go out. People have asked how we are doing. Truly, I can't complain. She is doing incredibly well, all things considered.

Still Low Counts

Today was our first Tuesday clinic and it was way quiet. Emma's counts are up after the double transfusion; but her ANC is only at 300.

The vincristine is going to be steady through interim maintenance; but the methotrexate is supposed to increase depending on counts. The counts are still so low that there was no methotrexate, though she did get her vincristine.

There is not really a great time to have low ANC. There is no good time to have cancer. It is particularly rough to have holiday outings with family threatened and cancelled. Dr Fair, Doug, explained that a cold isn't going to cause her serious damage; but fevers will put her in the hospital.

If she does get an infection, well, that's the big worry. That's why fevers are treated so seriously.

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.