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 .
Today is the day of the fundraiser. Both Paul and I are anxious and nervous. The social worker came to talk to me while inpatient this week and told me it would be a difficult day. She wasn’t kidding.Throughout all of this, we’ve been praised at the hospital and in general on how well we’ve held up. Maybe it’s his upcoming scans and just the emotional aspect hitting us square in the chest.We are so grateful for all the support from so many, we promise to try to get it together before this afternoon.So…..about this week…..Every chemo week, my in laws step it up. My FIL takes me to Shane’s treatments without question. He just does it, like it’s his job. Paul comes to some, but someone has to work too. My MIL watches Ella and they do activities, go to lunch and just bond. We are so thankful for their continued support because without them we wouldn’t be able to balance everything and basically just get through this.This week my FIL took me, but then my best friend from high school came and stayed with me. Melissa drove 2.5 hours just to sit and experience what we do every week. It’s amazing to have a friendship for this long and to experience life’s journeys with each other. It was great to have her there. Shane enjoyed their games of peek-a-boo too!So, this treatment was the toughest one chemically for him to endure. It was the first treatment he received post port placement, so we weren’t sure what to expect. He came through it like a superhero! He ate afterwards, slept well and woke up smiling the next day. We had to stay until 2 the next day for him to receive a shot and then we went home. So far the only issues seem to be slight constipation and possibly mouth sores. Both are typical side effects and we are doing our best to help him through it.That was a long post!
Shane had a busy week last week. He went to his first Phillies game and to the beach to play in the sand.We are doing what we normally would, as long as he is feeling and looking good. He loved both! While we didn’t actually see the game because of weather (game started late) he enjoyed the sights and sounds of the stadium. We will take him next week to another game-well you know depending on how he’s feeling.Then we spent this weekend down the shore with his mommom and poppop. He loved the sand on his toes and racing to put reeds in his mouth, but daddy was too quick. It was the first time Shane was back to the beach since he was a newborn. He was 5 weeks old for his first walk on the beach.Now we are back to a normal routine and prepping for Wednesday’s overnight stay.
Yesterday was chemo day and surprisingly I didn’t jinx myself. We got in and out in decent time. Shane’s numbers look good and there were no concerns. Next week is inpatient as he has a tougher treatment which will leave his immune system weaker than most weeks.We have a big event coming up. Our friends have organized a silent auction and raffle benefit for Shane. The benefit will work as this fundraiser does, in that we are raising funds not only for Shane, but for pediatric cancer research. It is a local Philadelphia event to help with raising awareness.The date is June 8th at North Bowl Lanes from 4-8 pm. There will be free food, free bowling and drink specials. Some of the items up for auction include autographed memorabilia from the Philadelphia sports teams and tickets to games, golf packages, jewelry, gift certificates to various city restaurants, vacations and more. We thank everyone for their continued support. Keep those positive vibes and prayers coming!
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.