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.

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. 

Speaking of Hair

I meant to post this several days ago. Thursday afternoon, Grandpa and Gramma Tec (Linda) came over to bring Emma's birthday present. Gramma was wearing a hat, so it took me half a minute to realize...

Emma took Gramma's new 'do in stride, but I still haven't gotten over how loving and supportive this was. Gramma simply said, "I had a choice, Emma didn't."

I find so many examples of greatness and generosity through this experience.

Finishing Delayed Intensification

Friday Emma had her second ARA-C dose in clinic. She is doing well, responding to treatment, and skipping most of the common side effects. She also got to see another of her friends that was in the hospital for a few days. To watch little bald girls playing together is a rare and beautiful thing.

Saturday she got chemo at her Auntie's house while Mom and Dad were helping unload a moving truck for Grampa.

Sunday her nurse came to infuse some chemo, and then Emma got to go to church. She was so happy to be in primary, though she wore a mask. We are delighted that winter cold and flu season is ending and that Emma is healthy enough to carefully go out again.

We had dinner at Grammy's house Sunday. Emma's Uncle David brought his hair clippers for Emma  to shave his head. Uncle James had shaved his hair the day before.

Starting out with a reverse mullet: party up front and business in the back.

David was a good sport with the inexperienced beautician. She nicked him a couple times.

James tidied up the uneven patches.

Emma and her team of shaved supporters

Today, Monday, Emma will have her last I.V. chemo of delayed intensification, though oral chemo will continue to the end of the week. Then she gets two weeks off of chemo completely.

After her body has time to recover, we will start the Interim Maintenaince II at the end of March.

Home Health Nurse

Friday went well. We finished up with chemotherapy around lunch time and dropped in to see one of Emma's friends that is inpatient with higher doses of chemo. Kind of nice for both Clinton and I to get to chat with both mom and dad of another cancer kiddo while the bald girls giggle and watch cartoons. It makes us feel a little normal for a minute.

Friday night we took delivery of a huge box of medical supplies: sharps container, chemo container, chemo gowns, chemo gloves, a chemo spill kit, a port access kit, a case of saline syringes, a pack of heparin syringes, chucks, alcohol caps, alcohol pads, hospital hand sanitizer, and three syringes of I.V. chemo.

Saturday morning we met Carly, the weekend nurse. She taught and explained a lot, then administered the chemo. I learned a new acronym: SASH
S- Saline
A- Administer the drug
S- Saline
H- Heparin

If there are multiple medicines, then saline in between each different drug.

Carly taught me to flush Emma's port, which I have seen before, obviously, but not done. When it stays accessed, the port needs to be flushed twice daily, so Clinton or I can do that before bed.

Sunday Carly came again, and then this morning Dillon came. Dillon is our officially assigned home health nurse. He has a reputation for being able to access a kid's port nearly as well as the Hematology/Oncology clinic. He's been doing home health for something near 15 years. Currently about shoulder length, his hair is reportedly grown for the express purpose of donating it.

Dillon de-accessed Emma's port, and she is free from that until Friday when we go onto another 4-day I.V. run.

She has an oral chemo as well, that shouldn't touch anybody's bare skin if at all possible.

The poisons we have in our home to fight cancer... it's a little crazy, and yet I am so grateful for the advances in cancer drugs.

Before and After pictures

You can see in this picture how Emma's hair was thinned and losing hairline. This was after brushing.

She chose to have it cut off. I think she's adorable.

Daddy had agreed to shave his as well; but we didn't have time before we went to dinner at Grandma's house. He promised months ago that when her hair fell out, he would shave his to match her.

Aunt Aleigh giddily volunteered to do the honors, and a crowd gathered to watch.

It seems this evening that Emma has been liberated with the shaving.

She was a super hero, with a mask of course. She giggled and enjoyed the attention.

She seemed to have a touch more energy and she played with lots of energy.

Emma is brave. She is fighting. She got to keep her hair for almost 5 months. First day without hair was mostly a celebration and a party. I know each day following will not be a party; but I truly hope that she won't mourn for her hair. If she's sad, I hope it has to do with something else entirely.

Her Daddy sure loves her.

Clumps and handfuls

I started to brush her hair this morning for a shower. As I bathed her, it came away in clumps and handsful.

Still Hair After All This Time

The last week we've started getting a lot of comments about this little girl's hair. Friday in Clinic, two different people said, "Hey, Wow! Emma, look at your hair. You've still got so much hair this far into cancer treatment. That's pretty great, right?"

When we were in patient, we got one nurse that we had during our diagnosis week. She was not the only one to be impressed that Emma is almost to delayed intensification and still has hair.

This grainy shot of the top of her head came from yesterday's "game" wherein the kids got the camera and took about 45 pictures of toys and of Caleb crawling. She's thinning out, but she still does have her hair.

We met a girl who lost hers at 3 weeks. We met a boy who lost his at 7 months. Next week we'll be 4 months... but I suspect we'll probably get to using Emma's fabulous hat collection with regularity before much more time passes.