Festival of Trees

I am posting this six months late.

I am ashamed to realize that I never posted this before. I meant to.

This was the week after Thanksgiving.

Festival of Trees has been benefiting Primary Children's Hospital for decades. Every tree and playhouse and quilt and wreath is donated for a 4-day display that fills all the halls of the entire convention center.

Decorators have a day to put it all together, and then people pay to come see the beautiful decorations. Dancers and choirs and other entertainment comes from all over the state to perform.

They sell scones and hot cocoa, which are also donated.

Families and companies bid on the trees. Some families traditionally buy their Christmas tree from the Festival each year. Sometimes they adorn the lobbies local businesses. Several are bought and then donated to decorate the halls and clinics at Primary Children's Hospital.

This year, one tree was placed in the Hematology/Oncology clinic, and the toys that decorated it were distributed to the patients that came in December.

Emma's grandparents, Aunts, and Uncles from both sides helped fund Emma's tree.

Emma wanted Minnie Mouse to be the theme, and we got busy making "Minnie's Miracles."

Aunties Jen and Sarah let me be on the decorating team. I certainly couldn't captain this project, much less do it on my own. I am really grateful that I got to be there on decorating day, though.

There's the picture in the frame. Emma with Minnie, taken on her Make-a-Wish trip.

We spent nearly $400 on the materials. We bought many items on the day after Christmas 2013. Retail for the supplies would have been just over $600. 

Looks pretty good, huh? We were working next to a family that brought their little baby to decorating day, along with his oxygen and medical supplies. We were on the same row as the two trees that were donated almost at the last minute in honor of Ethan Van Leuven. That was the day I met Jennifer, Ethan's mom. We've become friends with that incredible family.

Emma's friend Braelyn was diagnosed a couple weeks after her. Braelyn's family and neighbors did a tree that was a few rows away from us. Braelyn is also doing pretty well, now.

Every tree tells a story. Every tree is a gift of love. For many people besides me, these trees are a target for emotions. Maybe of gratitude, honor, memory, hope, sorrow, grief, joy... and always love. They are something to focus on when you need an outlet.

Our community did a tree honoring a gal who had been on the Festival board for more than 20 years and who passed away leaving a huge hole in our neighborhood. Some are celebrations, some are tributes, some are wishes.

 This tree is Dylan's. Emma's Home Health nurse, Dylan, made this tree decorated with the favorite candy of all his patients. I don't remember which candy Emma told him; but she's on there.

We know people that have been beneficiaries of the monies raised by this and other efforts for Primary Children's Hospital. We have friends that didn't have insurance when their child was diagnosed. We know people whose lives have been blessed because of this. 

The SOLD sign in the corner brings me a lot of peace. I feel like we were able to say thank you a little bit for all the people that have helped us along the way.

We have a theme and a plan for this year's festival, again. We have spent around $500 and Grampa Tec has built us a treasure chest. Auntie Jen is piecing a quilt. We are gearing up for another chance to say thank you and to expend a little emotion in creativity.

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.