Emily’s Going to Disneyland…and Hollywood!

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Emily has been doing well and keeping busy the past few weeks. She has an appointment today with Dr. Powell in State College and will get blood work. Everything seems to be going well – she looks good, feels good, and has a lot of energy. Doctor visits and blood work still make us nervous though. She has been having a lot of foot pain. She’s had x-rays and been to a podiatrist but so far nothing seems to be wrong. We think that maybe we stopped physical therapy too early last year and we’ve decided to start taking her again this week. She went to an art camp last week at Penn State and they did a lot of walking – she was usually limping and complaining of foot pain by the end of the day. Hopefully with more physical therapy her foot pain will get better. We’ve been trying to take more walks at home to prepare for all the walking she’s going to to do next week at Disneyland! Our trip has been finalized and we are leaving for California on Saturday for 9 days. We plan to spend a few days at Disneyland, then a few days in San Diego visiting family, then a few more days in LA. Emily will attend Variety magazine’s Power of Youth event on Saturday the 27th. She was invited by Tyler Posey (MTV’s Teen Wolf). The event honors young actors who volunteer their time with various charities. There are 5 actors being honored at the event and they invite families who have been helped by the charities they represent. Tyler works with the Leukemia and Lymphoma Society (LLS) and he saw the “Fire with Fire” documentary that Ross Kauffman directed and invited Emily to the event. LLS has contributed millions of dollars to the CART-19 research trial (T-cell research study). She is really excited! We looked at photos from previous years and several other young actors from the TV shows she watches attend the event. Tom and I are pretty excited too. I mean, we’ve spent many, many, MANY hours watching Disney and Nick TV shows in the hospital with Emily and we think we will be pretty excited if we get to see some of the teen stars too! Is that weird? As parents, the only TV we get to watch is Disney and Nick so we know those shows well 🙂

We will update with her blood work results as soon as we know on her Facebook page. We know many of you pray and anxiously wait for the results along with us! We expect good results but we’ve been reminded over the past few weeks that things can change when you least expect it and we still cherish each day we have with Emily.

Recent news about the T-cell treatment and/or Emily’s story:

Sky Magazine

  • Dr. June was awarded the Philadelphia Award – this is a GREAT video:

 

Update from Tom

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