Our Story

If you are here, then you are part of Emma's team. Thank you for your overwhelming love and support to Emma, her parents, her sister and brothers. We are so grateful to all of you, and particularly to the incredible staff and volunteers and Primary Childrens Hospital.

ER visits so far: 21
Anesthesia count: 15
Sedation count: 6 (Sedation isn't as bad as anesthesia - so these are saves from anesthesia)
Blood Transfusions: 6
Platelet Transfusions: 4
Port Access: 87
Hospital Admissions: 6

12/12/15

Friday, August 29, 2014

Make A Wish documents

August 29th we met with our Make-a-Wish grantor, Emma's personal fairy godmother. We had never explored the gardens at the Wishing Place, so we took the chance.


It was just a week before we were leaving. Truthfully, the bags were half-packed and my shopping was just about done. I had already purchased Make-A-Wish shirts online. I had found ginger gum and ginger candy for the motion-sickness-affected members of our party. I had purchased airplane distractions for Caleb. We knew our flight numbers and seat assignments.


We met up, though, to get our official itinerary, pretty full-color pages, in a beautiful folder, along with our expense check. That was to cover airport parking, checked baggage fees, gasoline, tolls, daily meal allotments, and spending money for each kid aged 3-18.


The kids made wishes and threw coins into the fountain. We talked about Emma's wish and what each of us wished. We talked about our family goals. We agreed that we were so excited and couldn't believe that it was almost September and almost Emma's wish.


Writing this after the fact, I must say it was an all-expense-paid dreamy dream vacation. It was unlike anything we have ever done, and I don't know that we could ever duplicate or even mimic this trip.  Make-a-Wish qualifies kids that are fighting life-threatening illnesses. Some are terminal, and some are not. Emma currently is not, and I hope that she doesn't become terminal. Their goal is to give hope and bring a bit of happiness to a bleak and difficult battle for her life. 


We took a look at all the stars. Emma will have a star-raising party sometime soon, and her star will join these other kids who have been able to wish.


To other families going for the same kind of wish, do some homework and prepare. Decide what you want to do. It is definitely a once-in-a-rare-lifetime trip, so make the most of it. I'm not suggesting that making the most is cramming everything in. Decide your priorities, though. Know what you want to do, and know what is available.


Make this trip all about your kids. Let them decide things. Let them set the priorities and itinerary. Add your own intelligence and experience as well; but let them do as much as they would like to plan and prepare. Make it special, and also make it low-stress and high-family-fun time. If you are getting this wish, you need less stress and more family building.

Friday, August 22, 2014

First Sedation

Emma finished her first 90-day cycle of maintenance.

Friday the 22nd was the first day of the next cycle, so it included a Lumbar Puncture. Anesthesia has been increasingly difficult for Emma. No reactions or adverse side effects; but each successive L.P. and anesthesia has made her more grumpy and more groggy and more nauseated.

Today we tried the much lighter sedation done right in clinic. No anesthesiologist; just some lighter drugs that allow her to be sedated and loopy; but not actually put under. While she didn't actually enjoy that, she prefers it over anesthesia.

Because of the difference in location, Daddy and I were able to stay with her during the procedure and see how it goes. Doug did the procedure while Dr. Engle sat on the couch with us and talked a bit about the procedure and taught us more Oncology 101. He can't help teaching whenever his mouth is open. I love that every question is answered with an explanation and theory, rather than just an answer. He helps me understand so much of what Emma is going through and how the procedures work and WHY he gives the direction that he does.

Emma did great. On the way to get the boys from Grandma and Grandpa, she talked us into a treat: a can of pringles. She hasn't been so enthusiastic about sweet things for so long. She doesn't like ice cream any more. Chips are her favorite treat, and to choose her own can of pringles is a pretty big deal.

Thursday, August 21, 2014

Hot August Nights


On Tuesday the 19th, Emma was warm. All of Emma's team realizes that she gets hotter later - her fevers are usually after hours. At about 2:00 I called clinic and asked whether her slowly-rising-just-barely-reaching-100.4 temperature was good enough to come to clinic, or should I wait an hour?

They trust the momma instinct and experience and said to come in. Gramma Linda was in the area and came to sit with the other kids til Daddy could get home.

Emma got a dose of rocephin, which is a tough antibiotic that covers most any bug for 24 hours. Her blood counts were really high. I think her ANC was in the neighborhood of 3500. Way high for this kid. Good enough to head for home and no worries.

The next afternoon she continued to be warm, and it was only at about 7:30 p.m. that she hit 101 degrees. Daddy took her to the Emergency department for another dose of rocephin.

Her blood cultures and urine cultures didn't turn up anything. No infection. Probably just a virus; but not one that was identified specifically in the lab results.

Monday, August 11, 2014

Every Cloud Has a Silver Lining

I have a friend, Carolyn Hurt, whose blog featured a great explanation about silver linings. I have been trying to highlight silver linings since cancer came to block out the sun. Cancer is a dark and looming cloud, and I wouldn't wish it on anybody. It seriously stinks a lot.

One of the great lines from Steel Magnolias is, "Laughter through tears is my favorite emotion."

With Carolyn's permission, here is her post:

Every Cloud Has a Silver Lining.

If you had asked me several years ago what the perfect weather looks like, I would have quickly imagined a weather chart with sunny, clear skies, and mild temperatures,  between about 65 and 75.

A perfect day, right?



In fact, I grew up mostly in the western part of the United States, where "the skies are not cloudy all day." When we moved to a more cloudy place, it was almost depressing. I stopped listening to the weather, because EVERY single day was "partly/mostly cloudy with a __% chance of rain." Really. In five years of living there, I can probably count on one hand the number of days that the weather looked like my picture up there.

But then I had an interesting realization of sorts.

As a disclaimer, I would never presume to call myself a photographer. Because I am a mom, however, I often end up as the designated family memory-catcher, so with that in mind, I do occasionally study the photographs and blogs of people who are much more talented than I, trying to figure out what they do to capture the beauty of the things around them.

One day I was reading some comments on a photography blog, and one guy was talking about how he had woken up early for about 3 days in a row (in the winter!) to try to set up a great sunrise picture over the ocean. The weather wasn't cooperating with him, he said. At this point, I was expecting him to say that it was freezing and overcast, making it difficult to take the picture. Instead, he posted three pictures like the one above -- sunny and clear -- three days in a row of sunny and clear.

I was confused. I stared at the post, wondering if he was being sarcastic, or trying to make a joke. Did I miss something here? Maybe it is because in the winter, the clear weather is colder? Maybe his fingers were cold?

But clear and sunny is perfect, and really, doesn't everyone want good weather?

And then my mind started reviewing sunrise/sunset pictures I had seen. I even thought about ones I had personally taken -- like this:
or this:
And I remembered a family vacation, driving across the country, and how I had delighted at the sight of big puffy clouds like these:
or even these storm clouds:
As I reflected on those times, I remembered exclaiming, "Look at those clouds! They're so beautiful!" And suddenly, I realized that this random guy commenting on the blog had already applied what I would have known if I had actually thought about it. 
Cloudy skies are much more interesting than clear ones. He was hoping for clouds in his picture, because those clouds reflect the light and provide the entire picture with depth, shadow, color, and majesty. 
Why had I not realized that before? In a sunrise/sunset picture, every cloud becomes a reflection point for the beauty of the sun. It is because of the clouds that the entire sky can be filled with light and create the stunning masterpiece we hope to see. Plus, with clouds in the picture, every photo of that location is unique and beautiful in its own way. He wanted the clouds there, because they are what makes the sunrise picture more than just a picture of the sun coming up.
Then I thought about it with respect to the lives we lead. So often we think we want our life to be a sunny day, with clear skies, maybe a few puffy clouds here and there, but mostly clear and mild. However, when I think back to the times I have felt closest to God, I must admit that it has been the challenging 'cloudy' days -- when every ray of light that somehow escapes through those clouds reflects off of them and sends a clear message of hope and wonder. It has been the gray days -- when the storms may pound, but when I feel His love through the 'rainbow' of people placed in my path. I thought about how those bad days have helped me appreciate the good ones even more. And I realized what a blessing those clouds are in my life.
The clouds make life interesting. They make it beautiful. They allow us to see the majesty of The Son.
(Disclaimer: If you happen to be a real photographer, please feel free to correct any photography principles I have invented here...)

*****

Thanks Carolyn. That's just what I wanted to say.

Tuesday, August 5, 2014

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.

Saturday, August 2, 2014

Pictures of Summer

Emma and her sister and brothers all ready for church one fine Sunday morning.
Grandma took us to the zoo when Aliegh came to Utah for Lizzy's baptism.
Summer is fantastic. In summer, there is less threat of flu and other communicable germs.
Summer has lots of outdoor activities. Outdoor activities are all OK for Emma.