How to Be Brave

Emma has some experience with hospitals.

Emma has some experience with surgery and operating rooms.

Emma has been poked with a fair number of needles.

A few months ago, her nurses asked if she would mind allowing another patient to come an watch Emma's port access. Emma was happy to let a less-experienced patient come and learn. They picked Emma because she doesn't cry, and she handles port access pretty well. She explained how to be brave to this other patient - all matter-of fact.

I asked her again a few days later to tell me how to be brave.

"When you are scared, you just have to think of happy things."

I couldn't help thinking of a Disney song - here are some of the lyrics from Peter Pan:

Think of the happiest things.
It's the same as having wings

Think of a wonderful thought
Any merry little thought
Think of Christmas, think of snow
Think of sleigh bells - off you go!
Like a reindeer in the sky
You can fly! You can fly! You can fly!

When there's a smile in your heart
There's no better time to start
Think of all the joy you'll find
When you leave the world behind
And bid your cares good-bye
You can fly! You can fly! You can fly!

Sometimes it is hard for her to be brave. Sometimes it is hard to think of happy things. But this sweet girl keeps on trying and teaches me every day.

Bengals Again

In September, Millie's Princess Foundation was invited to present their proposal to Brighton High School again. Brady asked me to come tell them what it meant to be part of Brighton High School last year.

I was only too grateful and humbled to get to talk to the officers. We were delighted when the Bengals chose Millie's Princess Foundation again. They have three brave new heroes to work with. They even invited us back to Brighton for their kickoff assembly.

We loved having Emma be their princess last year, and we are so excited for those amazing high school kids to do it again this year for Devin, Tyce, and Elaina.

Thank you, Brighton High.

One of the officers is also one of the Young Women I work with at church. She tells me that their fund raiser is her favorite part of high school.

I believe her. Those kids and those families are going to be changed in the next couple months. The world is a bright beautiful loving place, and people are good. Doing good builds so much.

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.

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.

November Fun, Fingernail Wierdness, and Thanksgiving

Most of November has passed and no new posts. No news is pretty good news in cancer. I have seen a lot of other cancer kids' blogs where they drop off once they get into maintenance.

Brighton High School had a freezing 5-K followed by a Fall Festival fundraiser. The kids loved hanging out with Grady's family and Millie's younger brother. 

They also partnered with our local Chick-Fil-a to split some of the profits on the dinner sales one fine Thursday night, so we went to see our Brighton Buddies then, too.

 

And one more picture of November activities. HopeKids does a movie once a month, and we got to see Big Hero 6 with them at Jordan Commons. The kids loved that.

We had a clinic appointment starting the next 84-day cycle. Those come with Lumbar Punctures. We chose to have her LP in the sedation room again. Dr. Katelyn did the LP, since she is amazing at it. Emma was calling her the Back Poke Queen. The notes suggested a dosage range for the sedation drugs, and I recalled for them that the dose they used was ample and possibly more than needed to get the job done.

Emma stayed asleep for 90 minutes. Sedation is supposed to slow a kid down for about 15 minutes, and they should lie down for a full 30 after an LP to let the methotrexate mix well with the CSF and to reduce risks of headaches.

They adjusted the notes for Emma to use much less of the drugs for her next sedation. I do believe it's genetic. My father and I also respond very thoroughly to any anesthetics. A little goes a very long way for our respective weight classes.

We asked Dr. Doug and Dr. Elizabeth about Emma's fingernails.

They both seemed perplexed. It looks like the old nail died and there is a new nail growing underneath it. I initially figured it was a chemo reaction of some kind, but when they both were unfamiliar with it, I started to worry just a bit over what would make a kid's nails do this.

Another cancer mama saw them, said she'd heard of it, and suggested reaching out for an answer. The cancer mama community has indeed seen it. One mama said her doctor responded to her own kiddo's similar problem with an explanation that the nail bed is a complex matrix and the chemo must have disrupted it. Within a couple hours, five different mamas said their kids had experienced something like it.

It isn't necessarily common, and doesn't seem to be a side effect of any one particular drug, so it wouldn't go on the medication information sheet. I heard of it after a stem cell transplant and during different phases of treatment. So there you have it... the nail bed is a complex matrix.

Cancer is not a great thing at all; but it comes with some blessings. I love the people we have gotten to know through this. On Tuesday, we had a play date with one of Emma's friends so that I could talk with my cancer mama friend. We'll do it again.

Earlier this month I went to an overnight retreat in Heber. 30ish mamas got together at a cabin. Several restaurants catered meals for us. The mama who organized it managed to get quite a lot donated so that it would be affordable. It was so incredibly therapeutic to listen to each other, to relate about this unwelcome horror that we have all had to live with. 

Those are some strong women. We have different interests, different backgrounds, different educations and ages and socioeconomic statuses. The shared experience, though, leads to a level of trust and camaraderie. I am so grateful to know them. They are strong. Their stories and their children's stories are compelling. 

Tomorrow is Thanksgiving. We have so much to be grateful for. I am so grateful for people whose life work, career, and everyday focus is to help my Emma.

I am grateful for pediatric oncologists, for researchers, for nurses, medical techs, and all the medical personnel that fight cancer. I am grateful for Primary Children's hospital. I am grateful for the dozen-plus organizations that we know that help bring joy to sick kids. HopeKids, Make-a-Wish, Millie's Pringess Foundation, NEGU joy jars, ACCO, Anything Can Be, the folks who make capes and gather socks and legos, the blanket makers and pillowcase makers. I am so grateful that technology allows for a free and efficient support group on Facebook - I need that group so much.

I am grateful for good neighbors. I am grateful for a close family. I am grateful for my anonymous cash donors. I am grateful for the friendship and generosity of quiet helpers that impact us so much and don't want to be thanked openly. (you know who you are.) I am grateful for CapitalOne360's contest last year, without which we would be in a very different place with the stress and the budget.

I am grateful for the treatments we do have, and grateful that we still have Emma.

I am mindful of those that are missing their angel children at this time of year. I think it must be awful every day to have lost a child; but this time of year must ache a bit extra.

There are so many things to be grateful for, even in the cancer world.

Reflections on a cancerversary

Emma was diagnosed on the 23rd of September 2013.

It's her cousin's birthday, too.

We have met many new friends over the year. We have seen so many blessings and such goodness from so many places. One new friend is a pen pal, David. He and his wife, Natalie, write pretty regularly. I hope they won't mind if I quote from their most recent letter:

I am not sure how you mark the one year anniversary of a cancer diagnosis. Is it an anniversary? Is it a commemoration? Perhaps it is a celebration because of the tremendous experiences that have come to your family over the past year. Maybe it is a way to mark the friends that have come into your life from hospital staff, to ward members, to family members that have shared so much of this journey with you. More likely it is acknowledge that it has been a roller coaster of emotions and this one year mark is just another stake in the sand that helps to hold your tent strong in the storms of life...
My hope is that your family is stronger, your marriage is stronger, and your faith is stronger. All in all that is a pretty good thing. The cost is high, but the outcomes have been life changing...

He's right.

There are many emotions, lots of thoughts, lots of memories.

I put Caleb in a nap this afternoon and held him extra tight, remembering the week last year when I barely saw him and sweet Becca Malone helped wean him and find his favorite bottle and formula.

Shawnya's classroom is now the home of our school's reading aids, where Emma enjoys "lunch bunch" getting caught up in reading skills since she missed preschool. But a year ago, that portable classrom was where Lizzy went after school. What a blessing that Clinton's sister taught just one year in this district, the year we needed her the most.

I've been thinking a lot about the family whose 4-year old is complaining of hurt legs, or who is pale or bruising that don't know yet but are about to be plunged into this world of cancer. I'm mourning a bit for their innocence and hoping they have the courage to pull together. Somewhere today, there are several families getting their first introduction to A.L.L. I am thinking of them a lot.

Mostly, though, I am grateful.

I am grateful for the researchers who have figured out how to fight leukemia over the last century.

I am grateful for our doctors and nurses who followed a career into pediatric oncology - what must be a heart-rending profession on so many days. They are dedicated and compassionate. I will love them forever.

I'm also grateful for the rest of Primary Children's Hospital - the ER staff, the other doctors, nurses, techs, pharmacists, receptionists, administrators, cafeteria workers, volunteers, cleaners, and laundry mechanics.

I'm grateful for the other health professionals. Our home health nurse, our own pediatrician, the doctor who sent us to Primary in the first place, the lab people, and on and on.

I am grateful that CapitalOne picked Emma for their grand prize - as our medical bills are under control right now.

I am grateful for the gifts of time, food, money, drive-through gift cards, toys, blankets, hats, service, prayers, cards, art supplies, and more.

I am grateful for Emma's Team. For all the people that have put their efforts and interest into Emma and our family. Friends, family, family of friends, friends of family, and more.

I'm grateful for Make-a-Wish and for Give Kids the World. I'm grateful for Camp Hobe. I'm grateful for HopeKids and for ACCO.

I'm grateful to my facebook mamas group, who support and love each other and understand what it is to be moms of cancer fighting cuties.

I am grateful that I still have my Emma. I am grateful for my little family who are, I think, stronger and closer together.

I am grateful for my faith. It sustains me.

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.

Active Summer Fun

Grandpa and Grandma helped us put jewels and lace on her beautiful purple cast. Emma is busy walking all over that fiberglass foot.

Lizzy got to spend an entire week at Camp Hobe - a super great summer camp for kids with cancer and for their siblings. She LOVED it. She made friends, learned campy camp songs, swam every day, did the ropes course and zip line, and had fun all week. Emma got to attend two days of Day camp the following week, and she LOVED it, too.

While Lizzy was at camp, we went to the zoo with Grandma and Grandpa Reeder and cousins Lily and Emily.

We have year-long passes to the water park, so we met up with cousins Zoey and Paisley. Emma tromped up the stairs to the waterslides three times. I got tired, and I don't have a cast.

Busy busy busy! All this is going on in Maintenance is awesome.

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

Wish Upon a Star

I never in my life expected to have anything to do with Make-A-Wish expect donating a few bucks whenever the opportunity presents itself. Monday Emma brought her family to the Wishing Room at the top of the wishing tower at Make A Wish Utah.

The star welcoming Emma in the foyer of the building

We met Emma's Wish Granters, Sarah and Trisha, as well as Meg. These three ladies presented the magic.

We sat around this dreamy table and discussed wishes. We all got to make a wish for Emma.

Emma got to make three wishes. Her first wish is to go to Disney World. Her second wish is for an American Girl Doll. Her third wish is to go to Disney World. Because of logistics or medical concerns, they like kids to pick alternates in case their first wish can't be granted.

Cross the magic bridge to the wishing room.

Emma used her key to unlock the door to the wishing room

Behind the door is the color-changing Wishing Room of magic with a fountain.

The top of the wish tower. You can see it from Winchester Street in Midvale.

Emma put her wish in a brass cylinder, then followed the Wish Wizard's footsteps to place her wish in his hat.

They say our family will always be a wish family.

Wish tokens. There is a wishing well, but it was cold, so they suggested holding on to our tokens until later.

Emma with her wish granters, Sarah and Trisha

And Lizzy and Tommy, too.

Her wish granters made wishes for Emma, that she would get a puppy when she is all better, and that she would have a great Disney trip and meet lots of princesses and do the things that make her happy. Daddy and I wished her identical wishes for a life of happiness. Lizzy wished for her to go to Give Kids the World, a resort in Florida for wish kids. Tommy wished for a cookie. Do you have a wish for Emma?