Emily "Emma" Whitehead :: My Journey Fighting Leukemia » My journey fighting childhood cancer.

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We have been taking Emily to many appointments to check and make sure her treatment didn’t cause any other problems. The specialists have not found any problems that they felt would be chemo related. Dr. Powell had suggested the specialists because of Emily having received most of the chemo drugs available. Those drugs are brutal on the body. Emily has been feeling pretty good and so far is not showing any permanent damage from her treatment.

Emily is really excited about an offer to come to Los Angeles. We were contacted by The Leukemia and Lymphoma Society (LLS) in L.A., that an actor is winning an award for doing charitable work with LLS. He suggested that it would be nice to have Emily there when he wins the award. They thought it would help spread awareness for us to attend so we are all excited and are trying to make it happen. We will give full details as soon as it is confirmed that we are going. We had talked to Emily while she was fighting hard to survive at CHOP, about returning to Disney some day. We are going to try and take her to Disneyland and Universal Studios while we are in L.A. and make our trip a week long vacation.

I myself spent the night in Altoona Hospital last night. I had my blood checked on Monday and got a call yesterday that some of my electrolytes were critically low. I feel okay and was discharged today after getting my counts up with IV’s. I tried to rest while I was there but every time an IV pump alarm goes off or heart monitor, it reminds me of the PICU and Emily struggling. I don’t think Kari and I will ever get over that. I missed them both terribly and couldn’t wait to get discharged. Tonight I am thankful to be home with them and we are ready to have some fun tomorrow at a hometown tradition, The Fourth of July Parade at Osceola Mills, PA.

WE BELIEVE! ~Tom

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emily-whitehead-june-2013-130620-001-4PINIMAGELast week we attended the Children’s Hospital Association’s Family Advocacy Day in Washington DC. Families from hospitals across the country traveled to DC to advocate on behalf of the hospitals they represent. We were invited to represent CHOP and talked to legislators about the need for more research funding. We told them about Emily’s story to illustrate how research funding is making a huge difference in children’s lives. Without funding for the CART-19/CTL019 trial (the T-cell research) Emily would not be here today. Here are some photos from our trip and links to a few great articles written by the Centre Daily Times:

emily-whitehead-june-2013-130620-001-3PINIMAGE

emily-whitehead-june-2013-130620-001PINIMAGE

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The “Fire with Fire” documentary has gone viral over the past 2 days with more than 1,000,000 views on YouTube. We caught this news segment out of New York that talks about the video going viral. The video conveys so much emotion for us in just those few minutes – we still get chills when we watch it. We’re excited so many people are getting to see it to spread awareness about the treatment, the incredible team of doctors and researchers at CHOP/Penn, and childhood cancer. There still seems to be some confusion about the use of HIV in the treatment. A disabled form of the virus was only used in the lab to train the T-cells; HIV was never injected into Emily.

WABC-TV NEW YORK, NY:

“Fire with Fire”:

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  • Tom Harris - It was hard to watch the video of Emily because my daughter Amy died of leukemia and she also had ALL. But I was real glad to hear you are doing well. Prays and love hope you live a long wonderful lifeReplyCancel