The Future

June 10, 2013

It has been a busy week with Julia having her daily radiation visits along with trying to fit in some time to just be a kid. The radiation has improved Julia’s breathing and she is definitely feeling better than the week before. When you look at Julia and watch her, it is almost hard to comprehend what has been happening.

We spent time visiting the Please Touch Museum, the Zoo and the Adventure Aquarium. Julia had a wonderful time and even got a private visit with a penguin at the Aquarium. She got to meet “Little Ditty” and his keeper, Jenn (who happened to notice our ribbons and made this visit possible). Little Ditty even painted a canvas for Julia to take home. The painting with Ditty’s footprints now sits on Julia’s bureau and Julia giggles every time she looks at it.

On Friday, Julia manned the Alex’s Lemonade Stand at the King of Prussia Oncology Clinic. She managed to increase sales with all her charm. When someone looked to buy a cookie for $1, Julia would quickly ask if they wanted 3 cookies. She was quite that salesperson and had so much fun helping to raise money for Childhood Cancer research.

Julia also was examined by Dr. Julie and when we started to talk about next steps, Julia quickly wanted to leave to go out to work at the stand. Dr. Stern spoke said that the Solid Tumor Conference spent some time yesterday discussing Julia’s case. She said that the doctor’s has reached a consensus that it is not wise to try Sorafenib at this time. This should be used as part of a clinical trial and we would need to wait until Julia could possibly qualify. This was also the feeling of Dr. Dome (the doctor that we visited with in DC). There are two agents that were to be considered to try in hopes of holding off any progression of the disease – Temodar and oral Etoposide. Both drugs have seen some success in holding off the progression of solid tumors. Julia has had Etopside (intravenously) as part of her prior treatment. In addition, this pill is quite large and may be difficult for Julia to swallow. With that being said, and trying to think of new ways to treat this cancer, we have decided to try the Temodar. We can always make a change in direction if needed. We hope and pray that this drug will work and maybe, just maybe, we can treat Julia’s cancer as a chronic disease until there is a breakthrough in finding a cure.

At night in bed, Julia put it best. “Mommy, I know they can’t cure diabetes, but can doctor’s cure cancer.” “They can cure some kinds of cancer and they are working on finding a cure for all cancers.” “Can they cure my kind of cancer?” “Yes, Julia, they have cured some kids with Wilm’s tumor, but your cancer is giving them a hard time.” “I hope they keep working on curing my cancer, Mommy.” “Me too, sweetie, me too.”

Yesterday, Julia had all her girlfriends over to the house for a “Spa Scouts” Day. With the help and generosity of some wonderful friends, the girls had facials, manicures and pedicures. They were even given matching “zebra print” dresses! I watched as the girls laughed and danced, with Julia leading the conga line through the house, forgetting for a moment … It was a wonderful afternoon and Julia had so much fun with her friends.

So this morning, I sit trying to write this update, wishing that time would just stand still. This coming week brings the last two radiation treatments and the start of a new drug. I am afraid of the future and what it could bring. Julia is in the other room playing a game and having some fun – not thinking of treatment, not thinking of her cancer, not thinking of the future. I have so much to still learn from her.

We can’t give up hope, we can’t stop searching for the answer, we have to keep working on finding a cure.

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Julia's Grace Foundation  |  PO Box 1081, Royersford, Pennsylvania 19468