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 .
We broke out of the hospital yesterday! The doctors were very accommodating and we were home by noon. Shane did awesome! He looks great and is still smiling. Sometimes it seems like he gets super strength after his treatment, hence we found the theme for his first birthday-Captain America!
On Wednesday, Mom Mom, Ella and Aunt Megan visited us. Shane roamed the halls via a stroller and Ella made friends. She did really well and it was good to spend time with her.
The oncology floor has a playroom for the kids. On Thursday they had a music class. I took Shane, since he responds so well to music. The woman who runs the class has a cart of all different kinds of instruments and the children can choose any one they want to play. I really enjoyed watching the kids and seeing how well they responded to music and were able to get their feelings out. They sang “Let it Go,” which is a fan favorite in our household, but then they did “Tomorrow” from Annie and I almost lost it.
You know that moment when a song triggers a memory and you are flooded with emotion? Yep, it happened. Not quite sure why it was that song, but it was. The worst thing? They sang it again! I held it together long enough to make it back to our room and then I bawled my eyes out.
Our song for Shane is “Future Days” by Pearl Jam. Paul and I love Pearl Jam. We travel to see them and attend at least 2 (or more) shows every time they tour the U.S.. It’s funny how similar we can be. As we were going through this whole ordeal, we both said to each other that “Future Days” reminded us of him and what were we going through. We went to dinner with just Shane last week and as we finished up, it randomly came on. I mean you could listen to Pearl Jam radio all day and never hear this song. There it was and there we were, sitting in a restaurant, having a moment with tears streaming down our faces.
Wow, what a day! Thanks to the article on Philly.com and its writer Lauren Mennen, Shane has a voice. It outlines his cancer and the lack of funding for pediatric cancer so well and we couldn’t be more pleased. The response from the readers has been amazing too, so thank you. Thank you again to all those who donated. We are still slowly getting back to each of you. We sincerely appreciate your support and your words of encouragement! We are on day 2 of our 5 day treatment. Yesterday was extremely long and draining. There were so many people in clinic yesterday and no beds were available, so we began his treatment as an outpatient. We arrived at 9:30 and left at 5:30. It’s like a full time job. Shane did amazing, but he had some side effects to the treatment. Today, they admitted us so they can control the effects and keep him hydrated. This chemo drug puts children Shane’s age in a grey area because while the side effects can be managed, he is still so little that it can become serious. With that said, he is being managed well and is doing it with a smile! Chase came to check things out since he has had a lot of questions and anxiety about what is happening with Shane. I wish I had a picture of the two of them, but I was honestly just enjoying the love on each other’s faces. Chase did awesome and I know Shane was thrilled to have him here. We will be here until Friday and then back to “normal” life!
I know this is going to come back to bite me, but today was a relatively fast day. Shane’s counts are back up, he gained 6.6 ounces and grew a half inch! He continues to tolerate his treatments and still has some hair…for now.
Happy Easter to those who celebrate! Shane enjoyed his First Easter watching his siblings hunt for eggs and their baskets, while he sifted through his own basket. We spent the weekend enjoying the company of our family and taking advantage of the beautiful weather. Tomorrow we head to CHOP to begin a week long treatment. Fingers crossed his counts are good and we can get a bed!