There were a few bumps in the road, but we are going home today. Shane is doing well with the treatment and hasn’t had any side effects. His port needle did become dislodged, which led him to cry most of Wednesday night. We didn’t discover the problemuntil Thursday morning when his IV fluids started leaking all over him. He was de-accessed, allowing the swelling to go down and then re-accessed. Poor guy knows what the numbing cream and tape means now. He’s no dummy. His numbers didn’t look great yesterday, so he got his blood redrawn. Before we leave, he needs a transfusion. Better now than later. In the meantime, he will be quarantined for the weekend until his numbers go up and he can fight infections again. I’m half joking, half not. I’d rather be safe than sorry.
Went to see Paul, Michele, and Shane last night. The little man is looking good and he is so happy. While he sits there saying DaDa (MaMa is not in the vocabulary yet), he smiles and plays, and I think was flirting with a few nurses. Paul and Michele are so strong and everyone is so thankful for the support given by friends, family, and complete strangers! In addition to what has been done so far, a fundraiser is being held for Shane at North Bowl Lanes in Philadelphia (909 North 2nd Street, 215 238 BOWL) on June 8th from 4-8 p.m. Tickets are $50 each and there will be free food and bowling. A silent auction and raffle will be held with various items including tickets, autographed items, dining experiences, and vacations. We look forward to anyone who can attend.
Happy belated Mother’s Day to all the moms, grandmoms, aunts, godmothers and moms-to-be! I hope you all enjoyed your day, whether it was spent getting some time off or surrounded by your family. Being a mom is truly a gift. It’s a difficult job, but it’s incredibly rewarding. These last few months, “motherhood” for me has been difficult. I rarely speak about how I’ve been feeling. I often don’t get the chance to. I’ve spent a lot of time consoling others on how they feel about Shane’s diagnosis. I understand people are sad and helpless, but how do you think I feel everyday? For the most part, I feel strong. I’ve surprised myself at how well I’ve managed. I have wonderful role models around me to help me learn and grow. The things I love best about being a mom are seeing their smiles and laughter. The looks in their eyes that tell you they love you without having to say so. I am blessed to be the mom to three amazing children. I hope to continue to be strong for them as we move along on this journey.Speaking of happiness, this past week we took Chase and Ella to Disney World. We’ve had a trip planned for all our children since early January. After Shane’s diagnosis the trip was off the table. When we had our “team cancer” meeting, my father-in-law asked if they could care for Shane and bring him in for treatments. In terms of our new normal, everyone is suffering. It took Paul and I weeks to decide if this was the right decision for us. In the end, we decided to go and let Chase and Ella be normal one last time. Leaving Shane tore my heart. I knew he was in good hands, but it was still difficult letting go. We all had a great week. Chase got trained as a Jedi and Ella met Elsa and Belle. Their dreams came true. On Monday, I was waiting in line at Magic Kingdom and my phone rang-CHOP oncology. Oh crap. My heart started pounding and I held my breath as I listened to the message. Ok, they scheduled repeat MRI, PET, CT and CAT scans for mid June. OK, that’s not bad news. We knew the tumor was getting smaller, so it was only a matter of time before they wanted to re-scan. Wednesday arrived and we were a little nervous, as Wednesdays are our chemo days. We went to Animal Kingdom and wore our Shane shirts. The picture above is taken in front of the “Tree of Life.” Symbolic, right? The best was yet to come. Later in the afternoon, we heard from our parents about Shane’s visit. The doctors reported that the mass is smaller. His numbers continue to be good and he looks and acts healthy. WOW. Disney truly was the happiest place on Earth. For us, at that moment. The only thing missing was Shane. We returned to celebrate Mother’s Day with our family and our peanut, Shane. He turned 10 months on Sunday. Yesterday we started back at CHOP again for another five day treatment regime. It was a long day. It’s hard not to be frustrated when things don’t go smoothly. By the end of the day I was almost in tears, exhausted and annoyed. However, things happen, in terms of emergencies and you have to be understanding. The labs were backed up. Nothing can happen, until the labs numbers are in. We had a bed because we were getting admitted, but they can’t hold the bed if someone else needs it before us. So, we waited and waited. Finally the labs were back after 3 hours, but a bed wasn’t ready. An hour later, we started his chemo in the day hospital. We arrived at 11:15 and were in a room by 6:30ish- long day.With all that said, Shane is doing well and that’s what is important. The side effects have been controlled well this time. Little man already finished his chemo for today. He’s a little rockstar. All while smiling and laughing. God, I love the kid!
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 .