Proton Beam Radiation

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We were SOOOO relieved to have a good anesthesiologist for Sophie’s daily sedations at Children’s Hospital of Philadelphia (CHOP) after our awful experience during her trial run with a different doctor. Dr. Denham is wonderful and looks at Sophie as a person instead of simply following protocols and making fear-based decisions to go bonkers with the number of interventions he has at his disposal. His calm and efficient bedside manner helps relieve the negative emotions Sophie feels about having to go under general anesthesia. It’s often frustrating and exhausting for us to have to stay on top of Sophie’s care and insist on what we know she needs or doesn’t need to new doctors and other medical staff. It’s such a weight off our shoulders to know that she’s in such good hands and we don’t have to advocate for her in this arena. Here’s a photo of how Sophie looks when she comes out of radiation. Her nurses know that she dislikes sleeping on her back so they roll her onto her side and make a little blanket nest for her with Clifford perched to watch over her! 🙂

IMG_3235smIn addition to that, we’ve been well-taken care of here in Philadelphia- a wonderful organization called Ella’s Retreat paid in full for us to stay at the Residence Inn Marriott while Sophie undergoes treatment at CHOP. We were greeted with a giftbasket full of treats and toys- including some famous Amish chocolate covered pretzels. Mmmmmm. We have 2 bedrooms- one on each side of a common area and kitchen. More than enough room for the kids to play and for us to live in. Plus they have a great complimentary breakfast with tons of choices AND a small dinner option Mon-Thur!

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With the hotel cleaning crew keeping the space nice, all we are responsible for is our own lunch/dinner prep, dishes, laundry and tending to the kids. Right now, while all 4 of us are here, this is wonderful. But even with all this help, it will be challenging to juggle all Sophie’s medical needs and appts with the eating and laundry once it’s just one of us at the hotel with Sophie- getting a crash course in single parenting a multiply disabled medically fragile toddler. Luckily we have my friend Karen, sister-in-law Janeen and mother-in-law Karen coming at various times to help! We can do this!

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3 thoughts on “Proton Beam Radiation

  1. You can do it! If you could survive that last round of Chemo you can do anything! We’re keeping beautiful Sophie and your entire family in our prayers here in TX.

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  2. Sophie looks strong, even in the midst of all her treatments. So glad you’re all together and that your landing in Philadelphia has been soft. I studied architecture just across the street from CHOP. I used to sit in the hospital lobby, look up at the sky, and listen to the fountain when I needed a quiet place to reflect. Dr. Denham sounds wonderful. There’s love in that building. You can feel it.

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  3. Its great to hear you are getting the help and support you need there especially from Karen and Janeen. I’m also glad that you have kept us all posted about the ups and downs in your life with Sophie and Lucas. Hugs to all of you

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