February Photo Shoot

A friend strongly advised getting professional photos of this kid as soon as she lost her hair. We might think it traumatic and horrid; but it is a milestone and a real part of the cancer experience. So in February we got some photos of my bald 5-year old daughter. Isn't she beautiful?

Ready to go

Emma's counts are great and we are waiting for the anesthesiologist. There are 2 medicines and a check of the cerebral spinal fluid in today's lumbar puncture. We get today's LP in the RTU... yay!

We are finally getting set up with Home Health. For the next 3 days, a nurse will come to our house to give chemotherapy to Emma through her port. This will be the first time that she will go home with her port still accessed.

Did not make counts

Emma was scheduled for a Lumbar Puncture today, and to start the second half of Delayed Intensification. The first half was rough, leaving her tired, flushed, lethargic, and a bit grumpy.

 She did get through this month without a transfusion. I'm delighted with that. That's several hours she didn't have to sit in clinic getting blood or platelets. Also, that's a huge win since our insurance doesn't cover blood products. {I know, right? Blood is clearly cosmetic, rather than necessary.} The paranoid part of me wonders if the chemo is doing its job if she didn't get a transfusion; but I try to keep that worry under control.

After a week of recovery, she is sporting a new look and back to the happy giggly Emma.

 

Today's treatment is count dependent. Yesterday we went to the lab to get a blood test. This morning we got the results: her ANC is 300. That is low. Today's treatments are put off to next Friday instead.


Delayed intensification is, well, intense. Dr. Engle tells us that the object is to crash her counts and to make her sick enough to root out any lingering hidden pockets of leukemic cells. One remaining bad cell in her entire circulatory system or in any marrow in any bone could trigger a relapse. Once we begin a segment of delayed intensification, we don't stop unless there is a serious threat.

In order to start, she needs to have high enough levels. It reminds me of a bit from the movie The Princess Bride. The hero lies in the pit of despair being healed of his wounds, and the Albino tells him, "The prince and the count always insist on everyone being healthy before they're broken."

Still loving the Raspberry Fingers. Thanks Grammy.

Fun to compare, this is an old Raspberry Fingers with evidence of the month-long steroids on her face.

This next segment, the one Emma isn't starting today, will include many drugs she had during the consolidation phase. It will add one more, as well. A common side effect of this new drug is fever. Therefore, while crashing her counts, she will be prone to fevers.

When she gets fevers, we go to the Emergency Room. When she gets fevers with ANC below 500, she gets admitted for hospital stays. This will make March a slightly stressful month for our network of helpful family, friends, and neighbors who can watch Caleb, Tommy, and Lizzy.

They say that this is going to be a rough month. On the other end is maintenance. It will take some time to balance her maintenance doses; but reportedly, life will start to get a little bit normal then.

For now, we're praying that another week of recovery will have her ready to take on the next segment.

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

Before and After pictures

You can see in this picture how Emma's hair was thinned and losing hairline. This was after brushing.

She chose to have it cut off. I think she's adorable.

Daddy had agreed to shave his as well; but we didn't have time before we went to dinner at Grandma's house. He promised months ago that when her hair fell out, he would shave his to match her.

Aunt Aleigh giddily volunteered to do the honors, and a crowd gathered to watch.

It seems this evening that Emma has been liberated with the shaving.

She was a super hero, with a mask of course. She giggled and enjoyed the attention.

She seemed to have a touch more energy and she played with lots of energy.

Emma is brave. She is fighting. She got to keep her hair for almost 5 months. First day without hair was mostly a celebration and a party. I know each day following will not be a party; but I truly hope that she won't mourn for her hair. If she's sad, I hope it has to do with something else entirely.

Her Daddy sure loves her.

Clumps and handfuls

I started to brush her hair this morning for a shower. As I bathed her, it came away in clumps and handsful.

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?

Miracle

Back in November, if you recall, we were going to the Emergency Room with fevers a whole lot. One fine evening while Emma was there, I got an email from my bank that invited me to win $25,000 by answering the question, what are you #saving4? I took a picture of Emma, captioned it, and sent it in.

I didn't expect to win. I didn't expect to hear anything back. I was anxious, frustrated, and bored, and they provided a direction to blow just a little steam.

Kicking Cancer and Sending Her to College

In January I found out that I had won $500. I thought the email was a phishing scam orchestrated to steal my identity. The next day I got a phone call saying that my entry was selected by the judges for the grand prize. The Phishing scam was getting elaborate, and then it started to seem like it might be real, which was more surreal than real.

Capital One 360 had me sign a legal document that said I sold my 400-word blog post to them, so I can't rewrite it all right here. The story is on their blog, though. Clinton is a little uncomfortable with directly linking, so you'll have to google "we the savers" to get to more details. Today the story of Emma's winning photo is the second post, and will continue to drop as time passes.

I count it as a miracle. Strange as it may be, the financial worries of cancer made me feel more hopeless than the cancer itself. I trust God, I know her statistical prognosis, and I know her doctors are doing all that can be done; but years of paying medical bills into the future look bleak and dark. Clinton has a job, and we can budget; but it just felt hopeless.

We have spent 10 years working to get out of debt - cars, student loans, a failed business, the cost of living in D.C. on my Utah wages during Clinton's unpaid internship, and 3 years of reaching the out-of-pocket maximums on a high deductible plan. Not to get specific, but annual federal limits to HSA contributions are $6450 while out of pocket maximums can go up to $12,500 - ours is $10K. As Emma got her diagnosis, we were one month away from paying off my student loans. All we had left after that was part of the hospital bill from Caleb's birth.

It was as if somebody blew out the light at the end of the tunnel, that it wasn't daylight; but a lousy candle gone dead.

We get to pay taxes on this prize, but it brings us to debt-free except the house. It finishes 2013 and it pays the out-of pocket max for 2014 that we have already reached. Then, we will have enough from this year's and next year's HSA contributions to take care of 2015. There might even be some to help with 2016, the year that Emma should finish chemotherapy for good and all.

This miracle brought the sun.

To add to it, on Saturday we got a letter from somebody that we haven't met, someone who is following Emma's progress. A friend to our family or family to our friend... the kind of relationship that makes up so much of Emma's Team. This letter included a lot of money, too. Not $25K big; but big for us and big for a gift from a family. They explained simply that God had told them to send it, and please accept it. We will, with gratitude.

God is surely aware of us and our needs.
He arranged for sunshine where there was bleak worry.

The cancer is still there; yet there sunshine behind the cloud, turning it all silvery.