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 .
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.
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.