Shane’s Future Days is a 501(c)(3) non-profit foundation whose mission is to raise awareness, research funds and assist families currently battling alveolar rhabdomyosarcoma and other high risk childhood cancers. EIN: 47-2556395 .
Shane completed his inpatient treatment and enjoyed the holiday weekend down the shore. He enjoyed the carousel as you can tell from the pure joy on his face. About 5-9 days after this treatment he is neutropenic. We laid low from Monday on. On Wednesday he went to clinic to get blood work to see where his counts were. They were satisfied with his numbers, but asked us to return Friday to make sure they were rebounding and that he wouldn’t need a transfusion. The results are in and his ANC’s that were at 280 on Wednesday, went up to 10,698! He’s our little superhero! Now, we get a break until the 27th when we will start 5 days of outpatient treatment.
I am about a week behind! So, reverse to last Wednesday….
Shane did great today. He even slept in clinic, which is RARE!
His port access was a bit too dramatic for me though. Every time we head to CHOP, I need to take a tegaderm and add numbing cream to it so that Shane doesn’t feel the 3/4″ needle go into him to get his blood work, his chemo, etc. Chase is a huge help with this. He is the only person who can be with Shane while I do this and not have him cry. It’s really amazing.
Today, we had a nurse we don’t normally have and the needle didn’t go in right because there was no blood return. To see Shane scream and cry while this happens is gut wrenching. One of our usual nurses came in and made adjustments and everything worked out without having them re-access him again. Whew, we’ve been there, done that and it’s not pretty.
He received his treatment and his numbers were so good that we don’t have to come back to CHOP next week. Not even for blood work. A small victory in my book, at least.
On Friday, the TODAY show spotlighted some familiar faces to us from CHOP and premiered the music video for “Truly Brave.” Please, check it out:
I know the song is meant for fighters and survivors, but I told Chase & Ella it was for them too. They are fighters as well and need to endure much more than the average child their age. In fact, it saddens Paul & I that our children, family & friends are affected by what we are going through. We are so grateful for the many supporters in our lives.
Chase lit up when he recognized the child life specialist, nurses and of course the kids he has met. Last week before bed, he said (as I’ve heard before) I wish for the wishing spell. “If I had it I would wish for more wishes first. Then I would wish for my brother to not have cancer anymore. And I would wish for no more germs to make all those kids sick.” It made my heart burst with pride and then break with sadness. Every day since the video has premiered, they ask to hear or say it. It is harder for us (as we hide our tears and encourage their love of music), but isn’t that part of being a parent?
This brings me to what happened yesterday. The CHOP Parkway Walk & Run took place at 8:30 am yesterday in Center City Philadelphia. It was an amazing, emotional day. We had about 65 participants and raised $2000! For newbies, I thought we did a fantastic job. At times, being there was hard. I’d look around and wonder how we got here. They announced our team’s name as we walked by and played THAT song. At those moments, I was even more grateful for the beautiful weather and the face that I got to wear sunglasses.
We are so thankful to have such a great support network. We know it’s not easy to get up early and head into the city with 10,000 other people. Thank you for your efforts and for being there for us, for Shane.
From friends from high school Kristen Shiffer Strong, John & Patrick to college friends Katie Rembert, Alex, Jorja and Carter and friends that we need to see more often, Kerri Meder, (thank you to your brother too!), Mark, Matthew and Ryan, as well as our oldest and dearest friends and their families, Aimee, AJ, Declan, and Caeyln Bucci, Emily, Marc, Sadie, Nolan and Eliza Michaels, Scott, Shavon, Maddy and Ally Boxman, Dan, Karen, Maya and Owen Lafferty, Marc, Joanne and Evan Rubinsohn, Carole Budilov, Deborah and Bill Rubinsohn, Eric, Carly, Brooks, Ivy, Pierce and Joely Meyer, Molly Martin Farley and our lone runner… Christian Deussing! Then there is our family, who without their support, we would be nowhere. Thank you Paul (Bill) and Helene Metzgar, Tina Hunt, Gabe, Dana, Jackson, Ethan and Alex Lewullis, Dan Metzgar, Megan Gannon, Sue and Joe Gannon, Colleen Gannon, Bridget Gannon, Carmen J. Brancato, Julianna Brancato, Jelena Tarabocchia-Brancato, Eva Brancato, Giada Brancato and Vesna Tarabocchia. Heather Lantz Marozsan, MaryJean Hunt-Dixon, and Melissa Klipple Kieselowsky we missed you, and appreciate all your support!
Shane finished his five day outpatient this week with little to no problems. He looked and acted much better this time around then last, but there had been more time between the last time we did this. He’s mobile now, which makes him having lines and a pole much more challenging. We kept pace with him as he made the rounds in clinic. He’s always nosy and trying to meet new people. You’ve got to love his upbeat personality and smiling face even while gong through so much. He got sick a few times, but mostly it’s in relation to taking medication. He overcame it both times and was eating normally within the hours that it happened. We have a big weekend coming up. The CHOP parkway walk is next Sunday. We raised $480 from our t-shirt fundraiser to be donated to CHOP. We were thrilled with the success of it all. We look forward to being apart of such a wonderful event.
Last week was a good week. It was his easy treatment week and his numbers came back up. The doctors were glad to see him back to his usual self. This week we started the five day treatments. Today we clocked 5 hours at CHOP. His numbers were great and he was a social butterfly, which gained him some chocolate ice cream. Shane also slept for an hour and this NEVER happens. It was a long, but good day. Shane got sick at home, but he ate right away and had a good night catching up with his family. Only four more days to go!