A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Huntsman Cancer Institute’

Make-A-Wish Hope Tour Meets Dr. Josh in Utah and Hope for Talia

Grace: A Child’s Intimate Journey Through Cancer and Recover

How do I ever thank

Make-A-Wish?

The Hope Tour was so much more than a wish come true. It is memories to last a lifetime, and seeds of hope planted that I hope– in my lifetime– to see sprout into flourishing research that will bring an end to the suffering of children with cancer. 

Yes, Mom and I were “those crazy people” at the side of the road who stop to take photos at the state sign. Hee hee, we would try to anticipate the sign coming up, and we were only disappointed one time. Although we looked and looked, there was no sign that welcomed us to Washington. How could this be, when Washington was so welcoming for the Hope Tour?! We did drive right past one state sign and decided to turn back for a photo. No, it was not this one, it was Arizona!

Utah!

By the time Day 17 of the Hope Tour rolled around, I admit I was sleepy… really sleepy after the drive from Boise. As we got closer and closer to Salt Lake City, we could see there was a big fire in the mountains ahead. When we arrived at our hotel, we turned on the news to discover that the fire we had been watching develop was being called “The Quail Fire.” Really? Did you know that my nickname is The Quail?

I managed to extract myself from the bed that was calling my name to make…

Day 17 Hope Tour Video

The Quail Fire Greets us as we arrive in Salt Lake City

Fourth of July in Salt Lake City Hope Tour Video Day 18 Trying to show you fireworks!

Hope Tour Video Day 19 You never know who you will meet!

Salt Lake City is the home of Dr. Josh Schiffman. Dr. Josh was my “substitute doctor” for my fourth round of chemo at Cottage Hospital. I will never forget how he stepped into the unknown path of what he would face with Melinda and how he was genuine, caring, and he even went to the place of MelindaSilliness that I really, really needed at that time. Dr. Josh even wore a crown for my last hospital chemo party. Yep. What a guy! When I thought about who would be the very best person who could write a foreword for my book, my mind immediately went to Dr. Josh. Dr. Josh survived Hodgkin disease as a teenager. Dr. Josh is a pediatric oncologist. Dr. Josh is doing incredible research at the Huntsman Cancer Institute that is looking at genetic factors involved in, not only curing childhood cancers, but in detecting pre-existing conditions that will tell us if a child is more at risk for certain types of cancer. It’s horrifying when I hear over and over and over again how late cancer is detected in children. Can you imagine if we could actually have preventative tests and diagnostic measures to nip cancer in the first place? 

I left Dr. Josh’s house with my mind full of possibilities for the future of treating children with cancer, with my heart full of new-found loves after meeting Dr. Josh’s adorable children, and with my belly happy from a delicious meal prepared by Dr. Josh’s gracious wife. 

With Lily and Dr. Josh in Salt Lake City

My Mom’s Uncle Bruce had a wise and wonderful talk about The Dirty Laundry Pile of Life. It was his way, as a minister, to advise my mom and dad before marriage about life not being A Bed of Roses all the time. Well, life was no different on the Hope Tour. After over two weeks on the road, The Dirty Laundry Pile of Life was taking over Herbert the HopeMobile. Yes, I really did do a daily video from Liberty Coin  Laundry in Salt Lake City. Not only did I do a video from this lovely location, but Mom and I also called Poppy and sang Happy Birthday to him. The raised eyebrows from those waiting for their own laundry were more of an amusement than a deterrent!

Hope Tour Day 20 Part I Yes, I am doing laundry!

Liberty Coin Laundry in Salt Lake City

No, not Santa Claus

 

 

 

 

 

 

 

 

Day 20 Part II Time with Dr. Josh and family

I cannot end this post without fast-forwarding to the present to tell you about Talia

“Talia is a 12 year old girl who loves fashion, dancing, her family & her doggie Bella. She is fighting Neuroblastoma Cancer.”

From Talia:

 “Okay so I have two cancers in my body at once. Well pre leukemia wich is a start of leukemia in my bonemarrow. There are not realy any treatments for it. Its very rare to have neuroblastoma and leukemia at the same time. The doc wanted to do a bonemarow transplan but they said it will be the hardest thing I have done. Also we could do a vacseen. But all of these are very very low chances of me surviving. In the mean time while we wait to find the next step they r puttin me on a low dose of oral chemo to make sure my cancer doeznt grow. The docs gave me the option of doing treatment or dont do the treatment and just live life for the time remaining. Having cancer has been an amzing yet horrible journey but ever journey has an end. Im tired of doing shit to my body, my friends, family, nabers, pets… I will enjoy every minute I have with the world. Docs said maybe a couple mounths to up to a year left of preshious life. I told both parents I dont want them to hold anything bak if u they something tell me. Doesnt mean I aint scard as fu**! I love u guys ♥”

As those who love and support Talia read this post, we do not want to believe this bad news. If you have not liked her Facebook page yet, “Angels for Talia,” please do!

https://www.facebook.com/angelsfortalia

Advertisements

The Child First and Always

Wheeeeeeeeeeeeeeeeew!

After nearly 7,000 miles, visits to 15 children’s hospitals, cancer centers, and childhood cancer research labs, I am overflowing with HOPE. Our visit today to Primary Children’s Hospital/Huntsman Cancer Institute in Utah was our final visit. Here, I had the unique opportunity to speak to a room filled with patients, hospital staff, and physicians. I want to thank Elaine Pollock and Dr. Josh Schiffman for their help and support to make this incredible day possible. Having this time to share my story and offer personal insights on how we can better help children fighting cancer makes my heart fill to the top. Being able to tour Dr. Josh’s lab, having him show me the research he is working on, and hearing his perspective on how we can stop childhood cancer by preventing it through genetic studies makes my heart leap to the point of skipping beats! I absolutely love how he believes research begins with the patient and then moves to the lab, rather than the other way around. I need to thank Alex’s Lemonade Stand for believing in the work he is doing– for the research grant they have provided for his studies. At the same time, I want to encourage other childhood cancer foundations, corporations, and individuals with bulging wallets to consider supporting his work. 

Finally, I need to encourage people who truly care about stopping childhood cancer to give as generously as they can. Research costs money– plain and simple. Research like Dr. Josh is doing will cure childhood cancer by preventing it in the first place.

What a remarkable goal. 

Let’s believe. Let’s give. 

It’s all about loving the children. As the sign outside Primary Children’s states boldly…

“The Child First and Always”

 

Tag Cloud