Summer colds

Caleb's cold advanced to croup this week and we thought it was probably a matter of time. Sure enough, Emma is in the emergency room getting treatment for a fever. 

She met shock protocol when we arrived. Combination of temperature, respiration rate and something else. We arrived about an hour and a half ago. There was a line at the reception desk, they saw us come in, asked if this was Emma, and whisked us into triage and thence promptly to a room.

She isn't perking up right now, so it might be a longer night than I was hoping. Oxygen levels are not awesome, so her nurse just started some of that. 

Emma doesn't like the O2 line in her nose; but our nurse has mad persuasion skills and is pretty good at easing it on gently and waiting for Emma. 

I am so grateful to have this hospital close enough for nights like this.

Maintenance 23 days in

Dr. Engle says that during maintenance, cancer should cease to dominate our lives and become a nuisance.

The first week involved steroids which dominated our life. Steroids mess with emotions and perceptions. They affect a lot. Add to that, pills.

Emma hasn't had to take pills for a few months. They have never been easy. We have paid to get them compounded before because our insurance doesn't cover compounded medications if there is any other option at all with the drug.

Maintenance began with 9 1/2 pills. She had forgotten how to take them and we had to start over. One pill was really big. We tried a lot of things; but you can't hide 6MP in food. It loses efficacy if you have food or dairy an hour before or 2 hours after.

It took long enough that the experimenting reached a point that I had Emma lying on my lap and was shooting pills into the back of her throat with an oral syringe.

That worked for nearly a week. It was unpleasant and involved lots of tears.

We tried to get the biggest pill compounded; but that one cost more than $100 - not a chemo, but a drug to counter the corrosive effects of the steroid in her G.I. tract. The pharmacist talked us through that - it looks like a time release caplet. It wasn't.  We could break open the pill and give her the grains inside.

We got past the steroids, thankfully. They will recur monthly.

Fridays there are 1 1/2 6MP pills, and 6 methotrexate pills. The methotrexate gets adjusted through maintenance and so each pill is a tiny dose. So she takes several. Saturday through Thursday she gets just one 6MP. 

Shooting pills with water in a syringe was creative; but pretty soon she managed to block the pills with her tongue and swallow the water. I had to stick my finger in her mouth and push the pills to the back, past her tongue and away from her teeth.

Tears and crying, oh yes. That is the only thing that we have that works right now.  We are past crying. While neither of us like this at all,  we haven't worked out a better way to get the pills down.

We have practiced with M&Ms, which she chews and sucks. Further, she can't mentally associate pills and M&Ms.

With all that, though, we are getting out more. We haven't been to the hospital in more than 3 weeks. She is stronger, healthier,  has more energy and stamina.

It is a busy, active, summer. I don't think it will slow down.  Cancer is becoming the nuisance that Dr. Engle says  that it should be.

Cancer is a Royal Pain

Millie's Princess Foundation is named for Millie, a sweet little girl who passed away last year from Cancer. Millie's Princess Foundation has an event each year: a 5K. This was, I think, their 3rd year. They raise money to help local families that are under serious financial strain as a result of cancer.

Emma and I went early in the morning. We met several princesses, a prince, some fairy godmothers, and other assorted fictional characters.

I want to shout out to Fairy Tailored, who was selling princess dress-up aprons supporting Princess Millie. We were making crowns and the gal at the Fairy Tailored table let Emma try on the Rapunzel braid. She told Emma to enjoy wearing it for the event and just return it before we went home. It was so much fun for Emma to add a bit to her costume.

We met lots of Princesses, and also Miss Utah. And Introducing Felix the Falcon, one of my personal heroes.

We also met a few fans of George Lucas and his creations... Comic Con was one of the sponsors of the event.

There were a LOT of people participating. There were some amazingly cool vendors, lots of crowns and tiaras, balloons, bounce houses, dancing, face painting, food, fun, mascots, and a lot of men in tutus. And women in tutus. And kids in costume.

I planned to cheer for the runners; but we ended up buying a bib and joining. I didn't have a stroller, so I can now brag about finishing a 5K [walking] with a 40-pound princess on my shoulders.

Emma was a celebrity herself. Another runner that we talked with during the last Kilometer or so bought Emma the Rapunzel braid she was modelling. Fairy Tailored sent Emma home with an Elsa costume, too, since cancer is a royal pain. A teenager asked Emma to sign his Frisbee. The Mad Hatter and several other costumed folks came to seek out Emma, compliment her costume, and have a moment with the sweet little cancer fighter.

Finish the Fight

The South Valley Relay For Life raises money for the American Cancer Society. They invited Emma to their Survivors Dinner and the Relay for Life. Emma and Grandma Reeder walked the Survivors lap of the Relay. The Relay proceeded to keep an all-night walking vigil.

Grandma Reeder is also a Survivor; she fought and defeated Breast Cancer last year.

The Relay for Life keeps on walking, because there is no finish line until there is a cure for cancer. Truly, it won't be a single cure: there are a lot of different cancers. Each one is a different beast that is treated differently.

We would sure be happy if there were cures to all those nasty cancers.

Active Summer Fun

Grandpa and Grandma helped us put jewels and lace on her beautiful purple cast. Emma is busy walking all over that fiberglass foot.

Lizzy got to spend an entire week at Camp Hobe - a super great summer camp for kids with cancer and for their siblings. She LOVED it. She made friends, learned campy camp songs, swam every day, did the ropes course and zip line, and had fun all week. Emma got to attend two days of Day camp the following week, and she LOVED it, too.

While Lizzy was at camp, we went to the zoo with Grandma and Grandpa Reeder and cousins Lily and Emily.

We have year-long passes to the water park, so we met up with cousins Zoey and Paisley. Emma tromped up the stairs to the waterslides three times. I got tired, and I don't have a cast.

Busy busy busy! All this is going on in Maintenance is awesome.

Maintenance Begins

On Friday Emma had such a big day that I have to make two separate posts. First I want to explain just a bit about oncology studies, and then I will explain what maintenance will look like for Emma.


STUDY
We have agreed to participate in every study that has been offered.

In one study, they are simply tracking each cancer patient and gathering information about race, gender, age, location, and stuff like that. This gives them statistical information, so that we can know how many kids get cancer, what ages are most common for which cancers, Caucasian kids are at slightly less risk of getting leukemia  than Asian kids. Stuff like that.

One study is mapping Emma's genes, my genes, and Clinton's genes. Nobody knows why kids get Leukemia, and they are trying to identify genetic markers, or mutations. Can our genes tell them anything? I think they will look at Emma's genes compared with her parents, and also look for similarities among other kids on the same study. I don't know, but I hope that they find something that helps kids in the future.

Another study regards treatment. So many kids get ALL that they can get a good sample size when tweaking treatments. Childrens Oncology Group (COG) hospitals follow a certain protocol, and that is just ever so slightly different from St. Judes. Both of those vary a bit from European oncology protocols. They all use the same medicines; but at certain points the dosage or the frequency may vary. Emma's treatment study deals with the maintenance phase. They take the study from things other children's hospitals are doing.

They are doubling the dosage of methotrexate for certain kids on study to see whether the incident of relapse is affected at all.

For another set of kids in the study, they are giving one of the medications quarterly instead of monthly. If they see no measurable difference in outcomes, they may begin giving that med quarterly instead of monthly.

For another set of kids, they are BOTH doubling the methotrexate AND giving the one medication quarterly instead of monthly. Again, any difference in relapse rates or other affects may alter future treatments.

A fourth set of kids are the control group, and they get the same maintenance that is current COG standard procedure.

Emma was randomized into the control group. So all those things that they might do... not doing with Emma. She gets the standard practice.

MAINTENANCE
Maintenance is the last phase of treatment for ALL. There has been no detectable cancer for a few months and the different rounds of treatments have killed off the hidden pockets of lurking cells.  Maintenance is the time when we maintain that cancer-free status. Over the next 18 months, her therapy is designed to keep her blood counts within a certain range. She will have suppressed immunity; but not complete lack of immunity.

The target ANC is between 750 and 1500. If she drops below 500, then we take a break until she is back up into the target range. If she gets above 1500, then we increase doses to get her back down into the target range.

She will take MP-6, also named mercaptopurine, every day until November 2016. It depresses counts and it also limits certain enzymes that cancer cells need in large supply. By limiting the enzyme, it denies any latent cancer cell the opportunity to multiply. Over 18 months, this should get rid of any lurkers.

Every week she will get methotrexate, on Fridays. When she has an LP, she will get methotrexate intrathecally. When she doesn't have an LP, she gets it in a pill.

The first five days of each 28-day cycle, she will take Dexamethasone morning and night. This is the steroid she has had before. She has been taking it since Friday. She is moody and irritable and hungry and picky. We will do this every 28 days for the next 18 months. I am imagining a 5-year old with PMS, and that thought is just a teensy funny and helps a little. The funny will likely wear off pretty quickly.

She will also get Vincristine by I.V. each month when we go to clinic.

There will be monthly blood draws to check counts. The doses will be adjusted as needed.

The same rules apply as before with fevers and illness. She will begin Kindergarten in August. We will get a letter from the doctor that should exempt her from the immunization requirements. She won't get those until six months after she ends treatment.

And there you have it, the final phase and what life looks like for the next while.

Friday - the other stuff

On Friday Emma had a big day. I'm going to tell about everything except Maintenance, since that is enough information for its very own post.

Primary Children's Hospital has a lot of wagons, wheelchairs, bikes, trikes, and toddler pedal cars. The bikes, trikes, and pedal cars mostly stay in units. Wagons are used within units for sure; but they get a lot of mileage discharging kids, and there are usually a few wagons near the entrance, as well as wheelchairs.

Since Emma has the broken leg and needs to stay off, we got into the hospital and let her choose the chariot for the day. She chose a red and green wagon. I should have taken a picture at some point; but alas! Daddy took the day off to come to Emma's appointment. He usually comes when she starts a new phase, and he really wanted to be there for the last phase - Maintenance.

BUSTED LEG
In the midst of our normal consultation, a pair of orthopedists, Chris and Zach, came in to take a look at Emma's leg. They trimmed her fiberglass brace down to allow her knee to bend and then re-wrapped. They didn't put a cast on because there is still some swelling from the original injury. She will get a cast on Wednesday; in the meantime, no weight or pressure, and keep it in the brace except when bathing.

COUNTDOWN
We know the end date. Emma will finish treatment November 27, 2015. Barring relapse, that is the day she will ring the bell, signalling the end. I could probably put some ghastly animated gif here to express the excitement of that statement; but I will spare all of us.

LUMBAR PUNCTURE
Yes, the lumbar puncture is part of maintenance. Her last LP was a bit rough. She was really nauseated when she woke up. She threw up a few times and was groggy and grumpy the rest of the day. This Friday, she was nauseated again. The nurses helped her avoid throwing up; but she didn't eat anything or drink anything after.

Because there was so much to do before her scheduled LP (orthopedists, paperwork for study, order correct chemo based on study randomization, explanation of maintenance, port access, etc.) Emma had to go back to clinic to get her chemo after our LP appointment.

She was wrapped in blankets and looking miserable in her wagon. Our superstar oncology nurses were pretty concerned. They found some life savers to help mask the taste of the chemo, saline, and heparin that she was getting through her port.

Becky suggested that we try the sedation for her next LP, so we checked out the Sedation Room. There are the 3 places you can get a LP: Same Day Surgery, Rapid Treatment Unit, and Sedation.

SAME DAY SURGERY
This is the place where all the kids come for surgery, whether to get a cataract removed, an Atrial Septal Defect repaired by the cardiologist, a compound fracture set and pinned, a port placed, dental surgery, and so on. All kinds of things happen here, and the process is set up for major surgery. When she gets an LP in surgery, we register in the waiting room, Emma changes into hospital pajamas, the anesthesiologist takes her at the good-bye door. The doctors are all in scrubs, and the parents wait in the emotional surgery waiting room. It's a bigger deal. The recovery tends to be longer, the anesthesia just a bit heavier, and the kid is groggier. This is where we go if RTU is fully booked.

RAPID TREATMENT UNIT (RTU)
Twenty years ago, the folks at Primary Children's Hospital were looking for a good solution for the large number of kids who needed fairly quick, simple procedures. These are the kinds of procedures that adults probably wouldn't be sedated for. Kids are squirmy, wiggly, and tend to get anxious or apprehensive, though.

A Lumbar Puncture takes less than 15 minutes. In practice, it is a lot like an epidural. The doctor pokes a needle into the spinal column, removes just a bit of cerebral spinal fluid for testing, and then injects some chemotherapy. When it goes slick, the procedure itself can take a minute or two. Five including scrubbing the poke site and putting on a band-aid afterwards.

We take her in and set her on the bed. I hold her hand while the white medicine goes into her tube, and then as she falls asleep, I kiss her on the head and go wait in the hall or maybe grab a sandwich in the cafeteria. It's pretty quick.

I've had epidurals, and I get squirmy for them. It makes sense to sedate a kid briefly; but it doesn't warrant scrubs, hospital jammies, and a sterile operating room. Sterile instruments, obviously, and a clean bright room, sure. The RTU is great for exactly this kind of thing. We love the RTU.

SEDATION
Nurse Becky showed us the sedation room. We have heard of it, and we will do it next time to see if Emma handles it well. Sedation is a slightly large exam room. Our own oncology nurse would administer the appropriate drug that would make Emma sleepy - ever so light and quick. She would be a bit loopy after. Becky says the absolute longest any kid has been out was 15 minutes - usually closer to 5 minutes. Then the doctor would do the LP. Mom and Dad sit in the room and watch the whole thing.

To be a good candidate for Sedation, though, a kid has to be a bit less anxious and a bit tougher, since it isn't complete anesthesia. Our nurses think Emma would probably do just fine, and it's definitely worth a try since anesthesia is beginning to cause nausea, grogginess, and super intense grumpiness.

It will be 3 months until her next LP. That is fine by me, and then we'll have a story about how well it works.