The first Last

October 16th was Emma's first Last.

She had her last lumbar puncture, or L. P. or spinal tap. Every three months they put chemo into her cerebral spinal fluid and take a sample out for testing. She gets sedated for that procedure. She did well. The doses of Versed and Ketamine were just right: she didn't react or remember anything, but she also didn't sleep for 90 minutes after the procedure.

I'm hopeful that the next time somebody sticks a needle in her back, it will be an epidural on the occasion of welcoming a grandchild to the world.

She has several more lasts ahead of her. Then after the chemo, there are some medicines that she will still need to take for another six months, and she will still go in for blood checks to make sure everything is OK. It will be a month or two before she gets her port removed, so we still have to treat fevers pretty seriously until then.

It sure is great to be winding down, though. When she was first diagnosed, I couldn't see to the end of the week, much less more than two years. And now here we are 25 months later, and nearly done.

Camp Hobe

I haven't posted an update in more than 3 months.

Things have happened. Emma visited clinic every 28 days to get her IV chemo. She had another back poke in the sedation room, and that went really well. Chemo into the CSF, a sample of that fluid for testing, and still no leukemic cells detected.

She finished her second year of music classes and did well at the performance. Here she is with her cousin who was in the first year. You can see how her hair is growing all over.

The Brighton High School softball team invited Emma to come co-captain a game. She got to call the coin toss and her official Brighton Jersey is number 45.

Daddy and Momma went to Moab for 4 days to run a race and to celebrate 11 years of being together. (we skipped #10 in favor of chemo.) While we were gone, Grandma Reeder had to take Emma to the E.R. with a fever. That was pretty dramatic and scary for Grandma.

This weekend Emma had another fever and another E.R. visit. She is doing well since.

One of the really cool things that happens because of cancer is that Emma and Lizzy and Tommy got to go to Camp Hobe. It is a week long camp every June. All the other kids are also cancer kids or cancer siblings.

Lizzy has been talking about camp Hobe for months, so excited. She got to stay overnight last year, all week long. This year Emma was old enough for week-long camp, too. They had their bags packed and were ready to go well in advance.

They swam every day, they rode the zip line and did a ropes course. They did crafts and sang campy camp songs. They stayed in cabins and played pranks. They were slathered in sunscreen, dipped in popsicles, and rolled in the dirt, I think.

Lizzy's favorite camp prank is to write the letter P on a bunch of yellow post it notes, and then put those post it notes all over the same-aged boy cabin, so the boys return to find P in their cabin. Super hilarious, I know.

We picked up the girls and both had friends with whom they need to set up play dates or pen pal arrangements. They can't wait until next summer to see their friends again.

Tommy went to one day of camp and did a lot of the same things. When I arrived to pick him up, he said he didn't want me there and that I should go away because he didn't want to go home. Not bad for a kid who wouldn't speak to anybody or make eye contact during drop-off.

Lizzy is planning to be a Counselor in Training when she is 16. I didn't know that was the timeframe; but Lizzy is totally aware. They get to attend until 3 years past treatment, so with luck we only get to attend 3 more summers. With luck, Caleb will not get the experience of week-long overnight Camp Hobe.

At this point all is promising. Emma has had no unusual or anomalous tests. She is handling her chemo well. Her ANC is kept well below the average person.

We are discovering a pattern. When her system is stressed: when she doesn't sleep in her own bed and eat normal food, or when she keeps going going going sunup til sundown... Under these circumstances that stress her body, she reacts with a fever.

Sometimes there is a virus or something causing the stress; but sometimes external influences bring on the fever. When we left her at Cousins and Grandma's house for 4 nights to go to Moab, she fevered. Camp Hobe... Fever. Last summer our family camp in Jackson featured a fever that prompted a mad dash to Salt Lake so she could be directly admitted.

It might be prudent to avoid all body stresses; but we do have another family camping trip scheduled this summer. This time, though, it is located about 45 minutes from Primary Childrens. I picked the venue to be closer. The pattern is emerging, though, and I would be unsurprised if we don't end up with a fever again.

Cancer is becoming the annoyance that Dr. Engle said it should be. Maintenance is significantly less stressful than the previous phases of treatment.

We are still juggling her daily meds. We changed doses last appointment, so now the med schedule looks like this:

Monday: 2.5 mg Septra morning and night, 1/2 tablet 6MP
Tuesday: 2.5 mg Septra morning and night, 1/2 tablet 6MP
Wednesday: 1/2 tablet 6MP
Thursday: 1 tablet 6MP
Friday: 1 tablet 6MP, 5 tablets of methotrexate
Saturday: 1 tablet 6MP
Sunday: 1 tablet 6MP

plus 2.5mg Dexamethasone morning and night for the first 5 days of each 28-day cycle.

Simple, right? The only bottles with the correct dosing written on them are the Septra and dex. All the others have previous dosing, so we have to keep it all straight.

She's doing pretty great, though. All the kids are. So there's the update after 3 months' silence.

Home Health

We had Clinic the first Friday of February. There had been some miscommunication with Emma's medications. What I understood for her dosage was not exactly what was written on the bottles. What was written on the bottles was not even close to the dosing that Doug thought we were doing. What I was doing didn't match Doug's master sheet.

We had some in-depth detailed discussions regarding the dosing and even got the master written instructions. Doug wanted counts in two weeks to see what the "correct" dosing would do to Emma's counts.

For completely unrelated reasons, we had her prescriptions sent to a pharmacy close to home rather than the hospital pharmacy. Newly written and sent to a different location. The bottles still don't match Doug's master sheet, and her Dexamethasone was short by 2 doses.

Each cancer is treated differently, and each phase (induction; consolidation; delayed intensification 1; interim maintenance; delayed intensification 2; and maintenance) contains a different cocktail of drugs. Those cocktails are then adjusted for the child's height, age, and weight and then can be adjusted or even substituted based on the child's reaction. Doses go up and down depending on several factors, and there are IV meds, intrathecal meds, oral meds. There are chemotherapy drugs and then drugs to counter the side effects of the chemo. They can affect levels of so many different proteins and blood cells and other bodily markers.

There are drugs that should be taken with food and drugs that absolutely cannot be taken with food. Some are taken twice daily two days a week. Some are daily. Some are weekly. Some are weekly except weeks when the child gets another drug. Some are monthly. Some are daily, but the dose varies one or two days.

It is wildly complex. I'm not making any of that up - it's Emma's real protocol right now.

So, according to doctor's orders, two weeks later we got a visit from Emma's home health nurse, Dylan Law.

This man is an incredible pediatric nurse. He loves his kids. He is patient and he listens to them. He will take whatever time they need. He is fairly quiet and will talk with them about their interests. He has jammed on guitars with another of his patients who is Emma's friend. We know kids that would only let Dylan access them, and so he went to the hospital for them. He gladly went to one child's home to remove a band-aid that the boy wouldn't allow anybody else remove.

Dylan doesn't tell those stories; but legends of Dylan circulate among his patients' parents. He shows up at Curesearch walk and Millie's Princess Run and motorcycle rallies in support of his kids. He will take care of kids who want him only - even on his days off. He has come from church on Sundays and left his personal life for a bit at the call of the kids who trust him.

Tommy loves when Dylan comes, because as soon as Emma's temperature is taken, Dylan will let Tommy shoot the thermometer probe cover off the thermometer over and over and over.

He regularly leaves a few empty tubes for Emma to play with - whichever colors she wants. If she is grumpy, he lets her shoot saline at him because it makes her laugh. Several months ago I forgot Emma's numbing cream which should be applied 20 minutes before the port is accessed. Dylan arrived, no cream... so he sat and waited and played with her until the cream had time to numb her up.

Thursday, when I had forgotten her numbing cream yet again, she decided Dylan was good enough at port access that she would just get it over with. She didn't even flinch - apparently when Dylan accesses her she doesn't feel the needle go in. It's a placebo effect, for sure, based on trust.

I am forever grateful for those who are driven to work in pediatric oncology. It must be a heartrending occupation so many days. It must be so frustrating to be so limited in what will work. The balance between toxicity and therapy is so delicate sometimes.

I am forever grateful for the nurses who gravitate toward pediatric oncology for the same reasons. I am forever grateful for Dylan's choice of profession. It would be such a tragedy if he were a plumber or a pharmacist.

Not Much New

I am very pleased to report that nothing has happened this week.

Well, nothing medically significant. Emma had her regular clinic appointment on the 17th.

This was Emma's vincristine. The label is a bit alarming. Chemo is concentrated directed poison.

Doug took a look at her spots and said she is not contagious any more and it will take a few days for the spots to completely disappear. He was right... though they are no longer red, there are still spots in the texture of her skin that are gradually disappearing.

She started another steroid pulse.

Luckily, that pill bottle is now empty, and she can finish the withdrawals and regain some personal confidence again. She really didn't want to go to school this morning. Kids might be mean, she might do something wrong, they wouldn't play with her. I hate what dexamethasone does to her emotions.

Otherwise, we are trying to maintain our goals.

Earlier this month, while Emma was in the hospital, our church held our twice-yearly general conference in which apostles and prophets spoke. There was no new revelation, but reminders of things that we need to do better. We picked up a lot of new resolve at that time to do a little better.

Our family goals haven't changed or been erased; but we somehow still slip in our good habits. Remembering priorities can be hard, even when they are written on the wall of the kitchen. We are putting more emphasis on the quality of our family time. We are trying to remember to pray together every single morning before anybody leaves. We are trying to remember that our first most important responsibility/job in our family is to be nice to each other.

Long term maintenance in cancer has some parallels to long term maintenance of life. Forgetting pills invites relapse, and forgetting prayer or other personal discipline invites cancer in the soul. Whether you are of my faith or not, personal discipline is important in maintaining the health of your soul, your character, or whatever terminology you prefer.

Relationships need to be maintained daily through small things. Luckily, though, getting time with family is not like chemo. While chemo is concentrated poison, family time, or parents on a date, is beneficial in so many doses and applications.

First Sedation

Emma finished her first 90-day cycle of maintenance.

Friday the 22nd was the first day of the next cycle, so it included a Lumbar Puncture. Anesthesia has been increasingly difficult for Emma. No reactions or adverse side effects; but each successive L.P. and anesthesia has made her more grumpy and more groggy and more nauseated.

Today we tried the much lighter sedation done right in clinic. No anesthesiologist; just some lighter drugs that allow her to be sedated and loopy; but not actually put under. While she didn't actually enjoy that, she prefers it over anesthesia.

Because of the difference in location, Daddy and I were able to stay with her during the procedure and see how it goes. Doug did the procedure while Dr. Engle sat on the couch with us and talked a bit about the procedure and taught us more Oncology 101. He can't help teaching whenever his mouth is open. I love that every question is answered with an explanation and theory, rather than just an answer. He helps me understand so much of what Emma is going through and how the procedures work and WHY he gives the direction that he does.

Emma did great. On the way to get the boys from Grandma and Grandpa, she talked us into a treat: a can of pringles. She hasn't been so enthusiastic about sweet things for so long. She doesn't like ice cream any more. Chips are her favorite treat, and to choose her own can of pringles is a pretty big deal.

Family Camping Trip

Every Summer we go camping with Emma's Techmeyer cousins. Most years, Emma's great Aunt and Mom's cousins come, too. This year gathered 3 of the grandparent generation, 17 of the parent generation, and 24 of Emma's generation. We met the week of July 4th about an hour from Jackson, Wyoming.

The Grey boat of Aunties and Uncles and Zach. Daddy, Lizzy, and Momma took this picture from the Red Party Boat. Emma and the boys were at camp.

We rafted on the Snake River and we hiked around Jenny Lake. It was so fun for us to be normal for a bit. Sure Emma had a broken leg, but what is more normal than 1 kid in 24 wearing a cast? The kids used magnifying glasses to burn designs into wood. They made necklaces from beads and neckaces of cereal. We cooked around the campfire and we stayed up late laughing and playing games.

Our little family surrounded by The Family eating our lunch at the falls that feed Jenny Lake

The morning of Independance Day, though, Emma crawled out of her sleeping bag and onto our cot, toasty warm. The thermometer said 101.2 degrees, which is a one-way ticket to the emergency room.

Those who were awake at 6:30 pitched in, rolled sleeping bags, folded the tent, collapsed the cots, hitched the trailer to the van, and loaded it up. They packed us a breakfast of muffins and juice and fruit and we hit the road. The Primary Children's oncologist wanted blood draws much sooner than a drive to Salt Lake, so we drove to Idaho Falls and reached the Emergency Room at about 8:00.

Idaho Falls Emergency Room with a bear, crayons, a coloring book, and a personal TV.

I was really nervous to go anyplace that isn't Primary Children's. Some would just see coincidence; but I think there are logistics angels who watch out for us and influence things like the holiday schedule of the emergency department. Our ER nurse volunteers at a cancer camp in Idaho, and our ER doctor had a child with cancer while he was in medical school. While he isn't an oncologist, he is a cancer dad and so he gets it. He took Emma seriously, as his own daughter went septic three times and nearly died once. They were so great with Emma. They were so great with me. They did everything that I could hope for Emma.

Emma's ANC measured at 150. We needed to be admitted. After consulting with the team at Primary Children's, they agreed that Emma needed to be with her own oncology team. For a minute it looked like they might want to handle transporting her; but they agreed to let her ride there with her family.
The ER nurse got us 6 boxed lunches and we drove straight to Salt Lake City without stopping.

(While Emma and I were in the ER, Clinton and the other kids got gas and went to a park.)

Grandpa Tec and Gramma Linda met us at Primary Children's. Once I got Emma settled, they sat with her while I took my campfire odor back to the van. Clinton and I went home, showered, settled the kids, and then traded nights for the next 48 hours.

Emma colored her placemat to send a thank you to the nutrition team

Emma probably had a virus; though all her tests came back negative for this stay. Her red blood and platelets were on the border for transfusion, and the doctors decided to watch and see if her ANC would rise on its own.

Until they know she isn't infectious, everybody that comes in the room covers up to prevent the spread of germs. This fabulous nurse scoured the place to find Emma a Barbie.

She went home on seriously heavy IV antibiotics. They would continue until her ANC reached above 500 nearly 3 weeks later. It took all that time; but her counts did ultimately recover without a transfusion.

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.

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.