Santa Claus, Silver Linings, and People are Good

People are good.

The news is full of horrible stories that break your heart; but there is hope: people are good.

Much of kindness and generosity happens without getting a highlight on this blog, and I am sorry for the omissions. We are surrounded by support and love. For example, Millie's Princess Foundation has been very busy of late. They received some invitations for cancer families and brought us along.

The day after Thanksgiving, Gallivan Plaza hosted a skating party to celebrate their tree lighting, and we were invited to participate. The kids all loved it. They all did better this year than last - Tommy was adventurous it rather than refusing to put his skates on the ice. Caleb did well. The girls were both fairly independent.

We met up with the Lynch family there. They have become such incredible friends as Grady and Emma both have fought leukemia. In the midst of such a fight, the Lynch family are always on the lookout to help someone else. They are truly some of our favorite people.

A few days after Thanksgiving, our family was invited to see Santa Claus before City Creek Mall opened.

Again, we loved spending time with marvelous friends. We love these families that share this tough experience.

Finally, for this post anyway, Santa Claus reached out and asked for our Christmas wish list. I told him we would be ok, and to go focus on somebody in need. He said he had heard the same thing from several families, and would I just please give him a list. After a little back and forth, Santa won and I gave him my list.

Yesterday, while we were at the hospital getting Emma's port removed and ringing the bell, Burt Brothers was replacing the muffler on our van. When I went in to get the car, Jake at Burt Brothers thanked me for letting him take care of us. "Merry Christmas," he said.

You will never convince me that there is no Santa Claus. After all that has been done for us in the name of Saint Nicholas, I am committed to keeping him alive and active for many more years to come.

Brighton High School

I am a month past the event. I should have been prompt.

January 23rd we went to the Brighton High School winter assembly. 

Millie's Princess Foundation posted this on Facebook:

THEY DID IT!!! Brighton High School met their goal and raised $30,000!!! These kids did the most amazing job. I have never seen more creative or enthusiastic fundraising!
The student body pledged different things should they reach their goal. Noses got waxed, a teacher was tased, the juniors got covered in syrup and feathers, one student sat in a bucket of ice water and salt, another ate a worm, another waxed his chest. Another shaved his head like an old man: bald on top with hair on the sides, another will wear a dog cone for three days and on and on and on. These kids were more than willing to put themselves through ultimate torture in order to encourage the students to participate and donate.

What was also clear was their love for Emma Reeder, Grady Lynch, Ethan Vanleuven and their families. Our hats are off to you Brighton High School. You were AMAZING. Thank you for all your hard work, for all your love, and all your support!

Josie ate a worm because the student body reached their goal.

This bold fellow had his head shaved old-man style. Shaved on top with a fringe around the sides.

The Studentbody President had his chest waxed right there in the assembly. This was Emma's favorite.

I think it was the sophomore class officers who were drizzled in a gallon of syrup each and then covered in feathers.

These officers got a spray tan.

This guy has been so cute from the beginning. Here he is fitted with the dog "cone of shame" that he would wear at school for an entire week.

This was from Amanda Flamm, the incredible supermama who runs Millie's Princess Foundation in memory of her daughter, Millie, who passed away after a second relapse of ALL the summer before Emma was diagnosed.

Such an awesome morning at Brighton High School! They worked so hard for Millie's Princess Foundation and were able to raise $30,000 that will go straight to helping 3 incredible families battling with childhood cancer. THANK YOU Brighton! It was an honor to work with you and an honor to get to know these three families. I am grateful to now call them all my friends.

Carrie Lynch said:

We are so honored to know these people and to call them our friends. Thank you Brighton High School and thank you Millie's Princess Foundation. What a humbling, awesome and emotional experience.

 







And this was Jennifer Van Leuven's comment:

We were blessed to be a part of Brighton High School's fund raiser for the year. They teamed with Millie's Princess Foundation and raised $30,000! Truly amazing! We spent the morning at the assembly watching the student body officers do fun things like eats worms, sit in ice water, wear the "cone of shame" for 3 days, and get syruped and feathered because they reached their goal smile emoticon We were honored to share the morning with the Merinda Reeder and Carrie Butterfield Lynch families! Good, good people 

Brady Flamm does most of the speaking and a whole lot of the work for Millie's. He said to us one day that Millie's Princess Foundation is what gets them out of bed many mornings. He has a full-time job besides the foundation; but he and his family have unending energy and enthusiasm for this.

Emma and Brady

I am honored to have shared a bench with these families. They are amazing people and we are glad to have the chance to become friends.

I am incredibly grateful to Millie's Princess Foundation and to the Brighton High School students and community that combined forces to raise so much for us.

$10,000 is a lot of money, and somebody might be interested in what we do with it, so I'll tell you. Our family's out of pocket maximum is $10,000.00. As of February 19th, the insurance company has processed our 2015 claims to date and we have met our responsibility. The insurance is now picking up the rest of our in-network covered medical expenses. When we get the full pile of bills from January, it will total $10,000.

I can't say enough how scary and how daunting it would be to find 10K right now. I can't even begin to say how big a deal it is for us to know that we can pay our bills this year. It is huge knowing that we shouldn't see more bills, provided Emma doesn't need a transfusion.

Grady Lynch is such a darling boy.

We collect statements, still, for sure. In our world, though, $10K is more than the replacement cost of everything that lives in our driveway. It is a year of keeping Emma alive and fighting for her future.

Thanks from the bottom of our hearts to Brighton High School and Millie's Princess Foundation.

CureSearch for Cancer

I am grateful for the generosity of so many. Emma's Team raised $1,560 for Curesearch. That will all go to research for improved treatments for pediatric cancer.

The Salt Lake CureSearch walk raised just over $60,000. Other walks happened in other cities around the country. Thank you to those who put their money into this. Thank you for those who have "Gone Gold" for September. Thank you to all who help to spread awareness and raise money to fight this. I am hopeful that the next few years might bring some new breakthroughs. I can't sit by while children die from cancer, missing their futures and opportunities. Thanks to those who listen to me shouting, and especially to those who join in the fight.

Aleigh, Emma's Aunt, was by far the biggest fundraiser, collecting more than $700 from her coworkers and friends in L.A. Aleigh flew out for the weekend to be with Emma despite the rain.

 Our little team was ranked 12th in fundraising. WOW!

 Also joining us for the walk were Auntie Jenni and Cousin Jane.

 Jeremy designed Emma's crowns and he and Jen printed them. Thanks!

We will be doing this again. There are lots of excellent organizations that do incredible things. CureSearch and St. Baldricks are focused on funding research, and they are both very efficient at getting the dollars to the researchers.

The Royal Ball

HopeKids Utah presented the Royal Ball. We decided to leave the boys with Grampa and Gramma Tec so Lizzy and Emma could enjoy some special time with Mom and Dad. It was a fun evening. The girls got their nails done, their makeup done, and posed for pictures with so many famous royal personalities.

They colored with Rapunzel, a true artist.

They learned some steps to a Scottish dance with Merida. Lizzy broke her arm a week previous and didn't get her cast until the next day, so here she sports the splint and wrap style.

They chatted with Snow Whit and Prince Charming

They discussed Beauty tips with the evil queen and then met Maleficent to discuss magic.

They met Belle and her nameless Prince.

They listened to stories told by Aurora and Phillip.

Lizzy beat Gaston in an arm wrestle, and then he took on both girls at once.

Thanks, HopeKids and Ellie Tucker who put together such a delightful evening for our kids.

July with Friends

Once we got Emma home from the hospital,we had some friends come play. We were supposed to camp; but with Emma's ANC so low and her antibiotics needing a fridge and her nurse, Dylan, coming three times a week to check counts and change her port dressing, we stayed home.

Cefapime is a tough antibiotic. The doctor has a term for broad-spectrum drug that will kill everything inside you; but I can't remember it. Home health delivered a bag of little balloons about the size of a tennis ball that are individual pumps with a dose in each. I got to be pretty slick at getting it hooked up or unhooked so I didn't even wake her at night or disturb her from whatever she was playing. I never did manage to do it WHILE she was jumping on the trampoline; but I still feel fairly accomplished.

Her purple cast came off July 9th, and after a few days she was walking normally again. YAY! No more broken bones for Emma!

With slowly recovering counts, Emma had good days and bad days. Repopulating blood is hard, tiring work.

August 21 her ANC reached 500. We quit the Cefapime. All this time, of course, she had no chemotherapy, since the purpose is to depress and control counts.

At her appointment on the 25th, her counts had reached 700. This isn't high enough to continue certain chemotherapy; but we did get instructions to take her dexamethasone. Steroids are hard. By day 5 of the Dex pulse, Emma resembled a dramatic teen with PMS. It has a tendency to completely erode all her personal confidence and bring on serious anxiety.

A week later, Dylan checked counts and her ANC had reached 800. We resumed chemo at the full dose August 1. Emma had very little chemo in July, though plenty of drugs.

And the last photo for July - the Potter Run this year benefited HopeKids, which organizes events for kids with life-threatening medical conditions. Emma's battle with cancer qualifies our family for HopeKids, and we might be Harry Potter nerds. Two great reasons to run a 5K at 6:00 pm on the 31st of July. Two Aunts and and Uncle joined our family and we ran as the Chudley Cannons, Ron Weasley's favorite quidditch team. It was a sell-out event.

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.