In the Home Stretch in Philly

IMG_3244sm IMG_3246smSophie has been handling the side effects of this treatment amazingly! She needs a nap after radiation and it affects her tastebuds and she has a slight “sunburn” where the proton beams pass through her scalp but that’s all! As more time passes since her last chemo, we are amazed to see that her body (which, since birth, has always been extremely sensitive to so many things), has been able to heal some from the toxicity and trauma it has endured for 3/4 of a year. She’s getting her energy and personality back and her GI tract has healed enough to be able to absorb the calories and nutrients from the food she eats! The entire family is thrilled that next week we will no longer have to manage a heavy backpack of IV feeds and attached tubing whenever she moves, spend 30 minutes meticulously preparing her IV feeds every single night, and sleeping near her (with one eye open) in a tangle of tubes with a pump sound in the background. Sophie is the most happy that she can play in the water and take a bath again!

IMG_3355smOh, there’s more good news! Sophie’s improving energy levels in combination with her persistent personality and strong internal motivation to be active and sporty has resulted in some big gains in her physical therapy sessions. The medical staff told us they usually don’t see such big improvements in such a short time and DURING radiation treatments, but they also don’t usually see such driven little girls. 🙂  When we started radiation, Sophie was just able to be placed in a standing position with supportive leg braces and leaning over the couch. Now she is walking with a walker, squatting to retrieve objects from the floor, climbing up stepped platforms and going down slides, and climbing up onto the couch! Go Sophie!

IMG_3313sm IMG_3320sm IMG_3326sm IMG_3358sm She is particularly excited about her renewed ability to play on slides! Untitled-2IMG_3229smWe are choosing to bask in her relative healthiness and enjoy all Sophie’s gains rather than worry about what her next phase of treatment will do to her body and what the MRI scans will say when they are repeated on Oct 29th. Living in the present is easy when your child appears to be getting better! It was so hard when we were intentionally poisoning her because the poison was supposed to attack the tumor too. Cancer treatment is so medieval. Especially pediatric cancer treatment. Which brings me to another topic I’ll mention in my next blog post. We need more awareness and more research and funding for pediatric cancers. Sophie’s “golden standard” treatment protocol is 20 years old!  I love what the pink ribbon campaign has done for breast cancer and how so many large corporations are supporting research for cures. I want the gold ribbon for pediatric cancer to be just as prominent and just as much of a priority. More on that later…

But back to the point, we are happy to have this awesome window of time with Sophie where her body is recovering so quickly! And soon we will all be together as a family again (Laith and I have been dividing ourselves between Lucas and Sophie, periodically alternating who cares for which kid). Sophie’s last day of radiation is Sept. 18th! Yay!!!

A few more pics: IMG_1685sm Her lovey, Appley, is the stuffed toy version of this kitty from the book “if you give a cat a cupcake”.IMG_2877sm and look what we just discovered in one of the pages!

IMG_3016smEnjoying the great public art in Philly:IMG_3012smAnd great public festivals. This is from a Japanese festival in Clark Park:IMG_3215sm And photos of the friends and family who came to Philly:IMG_3251sm IMG_3254sm IMG_3274sm Thank you KR and Janeen! I would’ve been a complete wreck without your help!IMG_3304sm Thank you Grammy Karen for the box of fun gifts and cute clothing for the kids and your help during Laith’s shift! IMG_3395It was so great to reunite with Aunt Kate who I haven’t seen since I was 12? Sophie enjoyed her gifts and reading together!IMG_3372smAnd lastly, a cute photo of Sophie on the Franklin Park Carousel!

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3 thoughts on “In the Home Stretch in Philly

  1. You have done a wonderful job of making an awful situation a positive experience for the family. I hope all this with go into a best seller someday as a model for all parents dealing with serious childhood illness.

    Like

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