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!

The good news is we get out of CHOP today, the bad news is we have been here since Wednesday night. We took Shane to clinic on Wednesday for his routine easy treatment. He was not his usual nosy, mobile self, instead he chose to nap on PopPop. His counts were OK, with only some concern over his platelet count. We were asked to come back Friday to get a transfusion. It was a long day in clinic because they were crazy busy after the holiday weekend. We got home, played and then Shane went down for a nap. When Paul got home from work, we woke him up and he was HOT. His temperature ranged from 102-104 and in cancer patients 101.4 is ER worthy. While we have been fortunate to never have a fever (ever), the timing couldn’t be worse. We were leaving that night to get a second opinion up in Boston. There is a rhabdo specialist up there and we had some questions concerning treatment options. Oh well, life happens and we have to be sure he is OK. We head down to CHOP and they test to see if he has a blood infection from his port. In the meantime, his counts have almost doubled since clinic, so it looked like it would be a quick one night stay. Eh, unfortunately he maintained a fever, which depleted his numbers and we were staying until they rebounded. By yesterday they lowered a little, but didn’t plummet like the docs expected. He looked better, but was still staying. He got a platelet transfusion, which caused a high fever and whole body shakes- an allergic reaction. So, here we are day 3 and finally we can go home. His numbers are up and now we just need to wait for our release. According to the doctor, we have led a “blessed chemotherapy life” having not to experience this until week 23. Honestly, I will be praying we make it through the fall/winter without another trip like this. It was hard, unexpected and frustrating. Shane definitely does so much better at home, who doesn’t? We’ll be back here Wednesday for the same treatment, thankfully it doesn’t affect his numbers. This was probably caused from the overnight chemo treatment and maybe a viral infection on top.