No More Chemo

Thanksgiving day was Emma's last dose of Mercaptopurine - 6 (6MP) and her last dose of Methyltrexate. These are oral meds she has taken since beginning maintenance.

From wikipedia:

Some of the adverse reactions of taking mercaptopurine will include diarrhea, nausea, vomiting, loss of appetite, fatigue, stomach/abdominal pain, weakness, skin rash, darkening of the skin, and hair loss. Serious adverse reactions include mouth sores, fever, sore throat, easy bruising or bleeding, pinpoint red spots on the skin, yellowing of eyes or skin, dark urine, and painful or difficult urination. Other more serious side effects include black or tarry stools (melena), bloody stools, and bloody urine… Mercaptopurine causes myelosuppression, suppressing the production of white blood cells and red blood cells. It may be toxic to bone marrow. Weekly blood counts are recommended for patients on mercaptopurine.

And some of the highlights of Methotrexate, which Emma took weekly by mouth, except on weeks that she had it intrathecally, also from Wikipedia:

It is used in treatment of cancer, autoimmune diseases, ectopic pregnancy, and for the induction of medical abortions. It acts by inhibiting the metabolism of folic acid… Although methotrexate for autoimmune diseases is taken in lower doses than it is for cancer, side effects such as hair loss, nausea, headaches, and skin pigmentation are still common. Methotrexate can be taken orally or administered by injection (intramuscular, intravenous, subcutaneous, or intrathecal). Oral doses are usually taken weekly, not daily, to limit toxicity. Routine monitoring of the complete blood count, liver function tests, and creatinine are recommended.

We are really grateful for the benefits of these drugs, and couldn't thing of anything better than to be finished taking them for Thanksgiving.

Curesearch

This year I was on the board for the Salt Lake City Curesearch walk.

I am always floored by the generosity of people. I love that so many friends and acquaintances are willing to donate to a cause that I am passionate about. Even somebody that I do not know contributed to Emma's team.

Emma's team raised $470 for cancer research. Emma won a FitBit, as well, which she donated to the silent auction for the walk. My mom made some handmade cards which also were sold at the silent auction. I'm so grateful.

The Salt Lake City walk raised over $60,000. All of that will be used to support research. Research leads to better treatments and less toxicity in those treatments.

I think I'll always be passionate about this. Our lives have been changed by the people we have met. We know some incredible fighters who didn't do anything and whose parents didn't do anything to bring about cancer. Most childhood cancers are not linked to any environmental causes. Instead of asking why, they take on the challenges and the heartaches and trust the doctors and work through the best treatment that is available.

If some organization comes looking for donations for childhood cancer, I can only recommend 3 nationally:

Curesearch
St. Baldricks
St. Jude's

Any other organization does not put enough of their catch into research for childhood cancers. If you donate there, your dollars are going mostly someplace else.

Curesearch funds COG (children's oncology group) studies - of which Emma is participating in several.

Locally, there are lots of groups that do good. I am so grateful for them. I am so hopeful that the future will be better for kids that get cancer. That's why we walked.

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.

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.

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.

Grizz and the Mascots

This goes back to April, which I said was uneventful; but here are pictures of an event.

Perhaps this post should be about Bumble and the Mascots since it was the Bee in the picture. But it was Grizzbee's game.

Let me explain. The Mascot Miracles Foundation is a nonprofit organization that is run by professional, collegiate, and corporate mascots. They do stuff for kids with cancer. They showed up at BMX races and spotlit the cancer kids. They hold charity events and they fundraise to help kids and families.

They have been pallbearers more than once. 

Grizzbee is Mascot for the Utah Grizzlies hockey team, and he invited all his best friends to the last home game. That includes all his best cancer buddies and all his mascot buddies. The mascots did half time shenanigans and during the game they were visible.

Bumble came by our section and Lizzy and Emma went to the stairs to give him 5 and get a picture; but because it was during play, the usher sent us back to our seats. Wanting to be good guests, we shuffled back; but Emma was very sad.

Bumble went down several rows, came into the section, then climbed over empty chairs and worked his way up through the section to get to Emma.
He also gave Tommy a big soft Mascot kiss on the head. Either that or tried to eat him... you look at the picture and judge.

And here's Emma later that night, sporting her rub on tatoo. Generally I am not a huge fan of the temporary tattoos; but this one is cool. Not pretty; but then again, cancer isn't pretty.

We will run into mascots more over the summer; they will be at some events that we don't want to miss.

CureSearch Walk

CureSearch is a national non-profit whose mission is to fund and support targeted and innovative children's cancer research in order to change the odds for the children most at risk. Much of their funding supports the Children's Oncology Group (COG) which includes hospitals around the world. Primary Children's is a COG hospital and Emma is undergoing several studies.

Cancer research that we are supporting won't help Emma directly; but kids who participated in studies 5 and 10 years ago provided the research that make Emma's chances so good. We are honored to help provide any answers that will help kids who get Leukemia in the future.

CureSearch has a big event each year: the CureSearch Walk, usually held in September to coincide with Childhood Cancer Awareness month. Emma was in the hospital having her first week of diagnosis during the last CureSearch walk.

This year, some of Emma's Team will be participating in the walk as team Princess Emma. We want to invite anybody who would like and who is close enough to join us. The walk will be in Sugarhouse park on September 27th.

If you want to participate, here is a link to register.

http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=1099217&lis=0&kntae1099217=F5C53458B3D3475DB5F571DAD7F72DC1&team=5851336

SIBS

Each year Primary Children's Hospital puts on a workshop for Super Important Brothers and Sisters, SIBS. Lizzy went and had a marvelous time. She was happy and played with other kids who have seriously ill brothers and sisters.

She painted and she made a life-size Lizzy portrait of what she will be when she grows up. She wants to be a Mom. Lizzy enjoyed it. I'm so glad that Primary Children's puts so much effort into the non-medical healing for children and their families.