Today was the 35th annual Broad Street Run in Philadelphia. It’s the world largest 10 mile race and Shane was there in spirit by people supporting him.After I had told my close friends about Shane’s diagnosis, a dear friend from my Dickinson days, Emily Cooney, asked if she could run for Shane. She has done the race in previous years in memory of her friend Nancy. She was unable to race today due to an injury, but her husband, George Schaubhut ran instead. We thank you both for your support and thoughtfulness!In addition, I received an email last night from a fellow Cheltenham alum, Stephanie Jacobson, saying she too was running the race and wearing Shane’s picture on her shirt. Not only was she running for him, but asking her supporters to donate to his page for the month of May. Thank you for honoring our son.
Yesterday was a good day. It was Shane’s 5th treatment. We got the best news so far. Both of his doctors openly agreed that the tumor is surprisingly smaller. Paul and I could tell after the first treatment that it was “breaking up” and getting smaller because Shane could go back to sitting on his own without it throwing off his center of balance.Not only is it smaller, but he continues to look amazing. His CBC came back awesome.
Things are looking up!
For those of you who asked, here is a the live version of the song “Future Days” – Pearl Jam.
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!
Poppy and I took Shane for his 3rd treatment today. It was a LONG 6 hour day . The doctors agreed the tumor is smaller, so that was good to hear. It coincides with Shane’s behavior as he is playing more and is in even better spirits (if you imagine that).The reason our day was longer is because his hemoglobin was low and he needed a transfusion. The doctors expected this, so it wasn’t concerning to them. It took an extra 2 hours, but he did awesome!Next week we will be admitted since his treatment is 5 days long .
Thank you to our family, friends-from childhood, high school, college, work, neighbors, friends of our friends, friends of our family, those whom we have never met and to those who wish to remain anonymous. We are working on responding to everyone, but before time gets away from us, we wanted to acknowledge your donation and let you know how much we appreciate it.
“Those who make compassion an essential part of their lives find the joy of life. Kindness deepens the spirit and produces rewards that cannot be completely explained in words. It is an experience more powerful than words. To become acquainted with kindness one must be prepared to learn new things and feel new feelings. Kindness is more than a philosophy of the mind. It is a philosophy of the spirit.” –
-Robert J. Furey
After Shane’s diagnosis, the doctors were adamant about us trying to lead normal lives. While, it’s not easy to wake every morning and realize that this nightmare is your life, we are trying out best. So, today we spent the morning watching Chase’s first baseball game of the season and took Ella to her dance class. That’s us being normal, even if it’s just for a couple of hours. At least the kids will sleep well!