Party Time

We are all pretty excited to celebrate the end of chemo.

We will still be checking her counts. She has an EKG scheduled for February. All in all, though, we are delighted to be done and we are throwing a party.

I know a lot of Emma's team won't be able to make it, but this is our big thank you to all you who have supported us in every way. So even if you can't come, know that we love you, and dance in spirit with us.

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.

Ring the Bell

Today is the ending ceremony, first follow up appointment, and her port removal surgery.

She didn't ring the bell last month because she still had oral chemo until Thanksgiving.

Today we started by checking in to Same Day Surgery, then to clinic. It's December,  so Emma got a stocking stuffed with art supplies, nail polish, hair accessories, and such.

Stocking, Play Doh, and Daddy.

Doug checked her over. We talked about the transition to her pediatrician. She got some play doh. Dr. Engle is out so we saw Dr. Verma, who we haven't seen for quite a long time.

Doug is Emma's doctor. Doug frequently wears no socks. I think he looks like Flynn Ryder.

We heard another kid ring the bell before us. There were 3 who finished today, all Doug's patients. Jessica, Emma's primary nurse, says that's the best Christmas present.

Jessica has been Emma's nurse for more than two years. Jessica has mad ninja port-access skills and she is Emma's buddy.

Emma had some time, so she made a couple Christmas ornaments with a volunteer. Then it was her turn. Her nurses came clapping and singing the no-more-chemo song. They gave her some presents- things that they know she likes- wrapped in a blanket.

Crafts, art projects, coloring, painting, and glitter. We love the things that set a children's hospital apart from other boring hospitals.

She rang the bell, danced around, hugged her nurses, and posed for a picture (to be uploaded later.)
 

Some of Emma's nurses and her child life buddy.

We returned to same day surgery. She got into her OR pajamas and we talked with her surgeon and anesthesiologist,  who has worked on both Tommy and Emma.
 

Two IDs: one for clinic and one for surgery

Now she is in surgery, and we return to where we were when I started this blog.

Gratitude. I am so grateful.

EDIT/ ADDENDUM:
Surgery went fine. Dr. Tanner gave her enough to knock her out, but not so much that she wouldn't wake up. The port was pretty entangled in scar tissue, so the surgeon needed two incisions to get it out well and safely, but there it is, on the table.

Power Port. A biological hazard now that it is out. The self-sealing silicone sucks in around the needle, allowing for chemo going in and samples coming out. Fluids going in, antibiotics going in, and samples coming out. What a fabulous bit of engineering and creativity.

I may have had the giggles while Emma recovered. Post-operative instructions included "give her Tylenol or ibuprofen for pain." We haven't given her Tylenol - it's only been administered in the ER after her counts were taken. She hasn't had ibuprofen since diagnosis: it's a blood thinner.

We know quite well that PTSD is a reality for a lot of cancer families. Worries linger. Threats of relapse, secondary cancers, side effects from treatments, survivors guilt, and other worries follow cancer patients and their parents. I have no doubt that those worries will be there; but for now we are feeling relief, gratitude, freedom, and hope.

Threats may loom, but for now, Emma is fine. Tommy is fine. Lizzy is fine. Caleb is fine.

You Can Fly

Once again our family supported us and helped us create a tree for the Festival of Trees. Emma's Aunts Sarah and Jenni joined with Mama as the design team.

We included Emma's "No More Chemo" photo and the dedication for the tree said this:

Toward the end of her cancer treatment, Emma felt like she was a veteran of pokes and procedures. She likes to help new cancer patients – especially calming them about getting their ports accessed. Emma’s advice:

“The way to be brave whenever you are scared is to Think of a Happy Thought.”

On Thanksgiving, Emma finished treatment for Leukemia after 2 years, 2 months, and 3 days.

It is wonderful to be able to sink emotions: fear, sadness, hope, gratitude, and love  - into a creative project.

I hope my family enjoyed doing it. My father built the pirate chest, one sister quilted, another sister created the signs, my brother made Peter's hat. Many gathered and created the materials.

The sold on the bottom of the sign feels so good. The purchase price goes straight to Primary Children's Hospital. I'll always, always be grateful for that amazing house of healing.

Next year we will do a tree again, though we must find a new dedication. Emma is done.

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.

Last IV Chemo

Today is Emma's last I.V. chemo. It is her last dose of Vincristine. She has had Vincristine every month since she started the maintenance phase. From Wikipedia you get the following, which is, I think, fairly accurate.

Vincristine is a chemotherapy medication used to treat a number of types of cancer. It is given intravenously and works by inhibiting mitosis (stopping cells from dividing properly), causing the cells to die.  The drug accomplishes this by binding to the tubulin protein, stopping the cell from separating its chromosomes during the metaphase; the cell then undergoes apoptosis. Because cancer cells divide more rapidly than healthy cells, the drug affects them more.

Most people experience some side effects from vincristine treatment. Commonly it causes a change in sensation, hair loss, constipation, difficulty walking, and headaches.

 Vincristine is a vinca alkaloid from the Madagascar periwinkle Catharanthus roseus (formerly named Vinca rosea).

Vincristine is delivered via intravenous infusion for use in various types of chemotherapy regimens.

She still takes oral chemo until Thanksgiving.  

Today she also starts her last 5-day steroid pulse. If I am very good, I'll post about her last steroid dose.

We scheduled her port removal for next month. 

We ran into Lilly, Emma's friend that has been fighting leukemia nearly as long. In the pharmacy we met David, who we have been praying for since he was diagnosed this summer. 

Dr. Engle isn't in clinic today; but we saw Doug as usual. She always sees two doctors and Dr. Luke Maese was filling in. We haven't seen Luke for more than a year; but he was the on call doc the weekend that Emma was diagnosed. 

It was such a fitting book end to her treatment to see Luke again. Emma did not recognize him. So we asked if she remembers that first week. She doesn't. 

Emma doesn't remember the first week in the hospital. Already she has forgotten. I'm so grateful. 

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.

The first Last

October 16th was Emma's first Last.

She had her last lumbar puncture, or L. P. or spinal tap. Every three months they put chemo into her cerebral spinal fluid and take a sample out for testing. She gets sedated for that procedure. She did well. The doses of Versed and Ketamine were just right: she didn't react or remember anything, but she also didn't sleep for 90 minutes after the procedure.

I'm hopeful that the next time somebody sticks a needle in her back, it will be an epidural on the occasion of welcoming a grandchild to the world.

She has several more lasts ahead of her. Then after the chemo, there are some medicines that she will still need to take for another six months, and she will still go in for blood checks to make sure everything is OK. It will be a month or two before she gets her port removed, so we still have to treat fevers pretty seriously until then.

It sure is great to be winding down, though. When she was first diagnosed, I couldn't see to the end of the week, much less more than two years. And now here we are 25 months later, and nearly done.

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.

Things I forget

Emma had a fever yesterday. Grandpa and Gramma Tech were at our house, and also Aunt Aleigh was at our house. Tommy and Caleb were opening new birthday presents. Aleigh was in town from California. Emma was hiding under a blanket not talking to any of the relatives she loves to play with. I didn't really want to take her temperature, because I wasn't in the mood for the answer.

101.7, and you all know what that means. I took her to the E.R. We waltzed past the people sitting in the waiting room, zipped through triage, and directly into a room. Emma sucked on a cherry flavored Jolly Rancher to mask the smell of the alcohol scrub and the saline flush during port access.

Her tech was a little late getting in, helping somebody else. He bustled in and helped get the right tubes and bottles for the blood counts and cultures. I said hello, I think you've been our tech a couple times. He said it's been 3 or 4 and he remembers Emma.

She was cold. We came wrapped in her thick fleece NEVER EVER GIVE UP blanket, a gift from the Jesse Reese Foundation (Thanks and NEGU!) She was still cold, so her nurse brought a warmed blanket and another fleece to bundle in.

She got her rocephin and the counts came back pretty quick. Her ANC is over 3000, so I expect a dosage adjustment this coming Friday during clinic. They want to keep it between 750 and 1500. We were discharged before she finished her first movie. It may have been our quickest ER visit yet... frequently we are into a third movie before we can go home.

I knew my niece was on her way, so we looked around and found them in the triage line. We talked with Brookie and her mom for a few minutes while they waited for their chance to get into a room. Primary Children's isn't a place you want to meet friends and family if you can help it; but if we're there at the same time we definitely stop for a hug. We are praying Brooklyn feels better soon.

Emma is pretty warm this morning - 99.8 and not going to school. Luckily, the rocephin is good for 24 hours.

This morning I was talking with a friend I haven't seen in a few years, discussing the challenges that we are both experiencing. I sometimes forget what we went through at the beginning. I forget that Emma didn't walk for a month. I forget how dependent we were on anybody who was willing to help a bit. I must have had a dozen different neighbors babysit to give my family breaks during the first few months we were at the hospital so much.

I try not to forget what I am learning. Cancer is a high-profile trouble; but I hope I am learning a bit of empathy for others, too. I suspect that a large chunk of the population is going through serious difficulties at any given moment. Most hardships aren't quite as visible as cancer.

I forgot that I have a FAITH label on this blog. How could I? Well, here comes some Faith aspect.

My friend reminded me of a post from 16 months ago, and I saw the meme on facebook again this week. Forgive my language, but it really doesn't convey differently:

God will only give us what we can handle. Apparently God thinks I'm a bad-ass.

Funny, perhaps, but wrong.

I am certain that God does let us have things that we cannot handle.

I know that I am not as strong as the things that I have. God has stepped in and taken care of some things. Two years we have had huge financial miracles that have covered our $10K deductible and out-of-pocket max. It was a miracle the first time, and it was another miracle the second time... maybe even more so because lightning struck twice. First Capital One, and then the Brighton High School community. God directed us to move to Utah so that we would have the family support that we have needed. In those things, God has cleared the trouble out because that wasn't our test. Cancer has different lessons for us. Other parts of our life have different lessons for us.

In other things, though, He has let us struggle and flounder and need him. We have had to put our faith and trust in Him. As we learn to put our trust in Him and to accept His grace, He makes us more than we were. This is the refiner's fire. This is how weak things become strong. This is grace at work and the atonement in practice rather than in theory.

I think I said something like this in September 2013. It is more real today when I look back. I don't expect that this will be the hardest thing I have to do in life. Life is refining and growing and building of character, if we let it be. I certainly hope I'm a better person than I was. I absolutely hope to become a better person than I am.

I am so grateful for the front row seat we have to see the hand of God working through other people. We see the very best of humanity. We see people at their best, because we have been so weak. I trust that God did this on purpose, because he wanted us to lean on Him and to learn of Him through those around us. We don't always do a stellar job of it.

Now, don't let this faith and gratitude for the lessons of cancer confuse anybody about the absolute need for better treatments. I'm absolutely dedicated to research seeking more effective treatments, less toxic treatments, less of the knife-edge balance act between toxicity and efficacy, less trauma, and more varieties of cancer fought with viable treatments.

Home Health

We had Clinic the first Friday of February. There had been some miscommunication with Emma's medications. What I understood for her dosage was not exactly what was written on the bottles. What was written on the bottles was not even close to the dosing that Doug thought we were doing. What I was doing didn't match Doug's master sheet.

We had some in-depth detailed discussions regarding the dosing and even got the master written instructions. Doug wanted counts in two weeks to see what the "correct" dosing would do to Emma's counts.

For completely unrelated reasons, we had her prescriptions sent to a pharmacy close to home rather than the hospital pharmacy. Newly written and sent to a different location. The bottles still don't match Doug's master sheet, and her Dexamethasone was short by 2 doses.

Each cancer is treated differently, and each phase (induction; consolidation; delayed intensification 1; interim maintenance; delayed intensification 2; and maintenance) contains a different cocktail of drugs. Those cocktails are then adjusted for the child's height, age, and weight and then can be adjusted or even substituted based on the child's reaction. Doses go up and down depending on several factors, and there are IV meds, intrathecal meds, oral meds. There are chemotherapy drugs and then drugs to counter the side effects of the chemo. They can affect levels of so many different proteins and blood cells and other bodily markers.

There are drugs that should be taken with food and drugs that absolutely cannot be taken with food. Some are taken twice daily two days a week. Some are daily. Some are weekly. Some are weekly except weeks when the child gets another drug. Some are monthly. Some are daily, but the dose varies one or two days.

It is wildly complex. I'm not making any of that up - it's Emma's real protocol right now.

So, according to doctor's orders, two weeks later we got a visit from Emma's home health nurse, Dylan Law.

This man is an incredible pediatric nurse. He loves his kids. He is patient and he listens to them. He will take whatever time they need. He is fairly quiet and will talk with them about their interests. He has jammed on guitars with another of his patients who is Emma's friend. We know kids that would only let Dylan access them, and so he went to the hospital for them. He gladly went to one child's home to remove a band-aid that the boy wouldn't allow anybody else remove.

Dylan doesn't tell those stories; but legends of Dylan circulate among his patients' parents. He shows up at Curesearch walk and Millie's Princess Run and motorcycle rallies in support of his kids. He will take care of kids who want him only - even on his days off. He has come from church on Sundays and left his personal life for a bit at the call of the kids who trust him.

Tommy loves when Dylan comes, because as soon as Emma's temperature is taken, Dylan will let Tommy shoot the thermometer probe cover off the thermometer over and over and over.

He regularly leaves a few empty tubes for Emma to play with - whichever colors she wants. If she is grumpy, he lets her shoot saline at him because it makes her laugh. Several months ago I forgot Emma's numbing cream which should be applied 20 minutes before the port is accessed. Dylan arrived, no cream... so he sat and waited and played with her until the cream had time to numb her up.

Thursday, when I had forgotten her numbing cream yet again, she decided Dylan was good enough at port access that she would just get it over with. She didn't even flinch - apparently when Dylan accesses her she doesn't feel the needle go in. It's a placebo effect, for sure, based on trust.

I am forever grateful for those who are driven to work in pediatric oncology. It must be a heartrending occupation so many days. It must be so frustrating to be so limited in what will work. The balance between toxicity and therapy is so delicate sometimes.

I am forever grateful for the nurses who gravitate toward pediatric oncology for the same reasons. I am forever grateful for Dylan's choice of profession. It would be such a tragedy if he were a plumber or a pharmacist.

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.