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 .
12 weeks. That’s how far we’ve made it. Nothing has changed. He is still smiling, not sleeping, never been sick and no fever. All the while, toxins are being pumped into his body, killing off these cells that have thrown our lives into a tailspin.
Tomorrow is the day we find out where we go from here. It’s a day that has been weighing on us. Each day the anxiety and sleeplessness has increased. I am assuming it’s only natural to feel this way. The kids are picking up on it, as they are tearing around the house and giving us a harder time than usual.
Tomorrow is also Chase’s last day of first grade (OMG). Perfect timing as always! I’m sad for him. I want him to be away from the reality of this, to be with his friends and enjoy the happiness life brings.
So, please say some prayers, send so good juju and hopefully the Gerber baby will become a case study.
Yesterday was not only chemo day, but the day Shane turned 11 months old. Wow, our little man will be a year in 30 days. It brings tears to my eyes thinking about all he’s endured in his short life. From the outside looking in, you would never know he is sick. Even now after almost 12 weeks of chemotherapy, 2 surgeries, multiple scans and 5 hospitalizations, he looks like a normal baby. For us, his first birthday is bigger than your typical one. It’s a celebration of his life and all HE’s accomplished from the diagnosis day. We look forward to sharing that day with friends and family in the upcoming weeks.
Chemo day went smoother than past visits. They made some tweeks to the clinic and in our opinion, it’s working! I’m still waiting on his counts, but what they had so far was good enough to go through with his chemo.
Next week is a BIG week. He will go through all his scans again. Scans to a cancer family are everything. It will give us a tangible proof that the treatments are working. There is also the possibility of his treatment options changing. Either way, it’s a biggie and we are sleepless, anxious and hopeful.
Thank you again for all your support. My husband, said it all in the previous post. Sunday was amazing and left us speechless. We are thankful to the organizers and all who graciously donated wonderful items to the auction and raffle. We appreciate our friends who traveled so far (California, South Carolina and Pittsburgh) to be there and those who came from in and around the Philadelphia area. It was truly a celebration of hope
I wanted to say thank you to all that made it out last night. It was an incredible event, with an amazing turnout. I also want to say thank you again to all that have donated on the website. We are so thankful for all of the support.
This was a transcript of my speech once all the thank you’s were complete. I replayed the speech in my head many, many times, but wasn’t prepared for the overwhelming feeling of emotion. I knew it would be emotional, but I didn’t want to pull a Mike Schmidt retirement ceremony meltdown.
I didn’t breakdown during my thank you’s but was REALLY close and had to hit the eject button. I realized at that point, there was no way I was finishing the speech without breaking down.
Anyways, here goes.
I graduated from Penn St. 15 years ago. Penn St runs the largest student run fundraiser in the country called Dance Marathon, which raises money for pediatric cancer research. Students dance for 48 straight hours. Student that aren’t dancing show up for support. Families come on stage and tell stories of what life is like raising a child with cancer. There are some success stories, but mostly heartache. Remember this was 15 years ago. With every story, there were two underlying themes.
As a student, these stories stay with you but as time goes by the stories eventually fade like a distant memory.
Fast forward 15 years…After being shuffled around various departments in CHOP, Michele and I found ourselves on the Oncology suite. As we are sitting there, we see families parading in and out. Children coming in, getting their weekly treatments. It’s part of their weekly routine. And there are a lot of of children. It breaks your heart.
Then there was a family sitting across from us. They looked just like you or I. The dad had his daughter, no older than two draped over his shoulder. He looked over at us, as if he wanted to talk. But you see, we were in denial. Our kid wasn’t sick; his blood test were normal, never had a fever. He didn’t show any symptoms, except for the large lump in his groin area. We were ready to put this nightmare behind us. Unfortunately the nightmare was just beginning.
Shane Metzgar was diagnosed with stage 4 alveolar rhabdomyosarcoma. Hearing that your child has cancer is the most crippling feeling in the world. It’s the moment when the surreal feeling from all of this becomes real.
Now we are the ones going in for our weekly treatments. It’s become routine for us. It’s our new normal.
I’ll never forget, during our 2nd treatment, I remember standing there, waiting to go back for treatment. I had Shane draped over my shoulder. And there was a family that looked just like you or I sitting across from us. You could see they were in denial, unapproachable just like we were. I wanted to tell them no matter what the diagnosis is, never give up hope. But instead all you can do is hope and pray that they have the love support that we have, because you can’t do this alone.
I’ve learned a lot over the course of this journey. I’ve learned to take a step back from life. I find myself cherishing each and every moment with my kids, my wife, my family and friends, taking each day at a time. Life can be turned upside down in an instant. My hugs are tighter and my I love you’s much more frequent.
I’ve learned who my heroes are. My heroes are the kids that have to go through this on daily basis. They are so strong and resilient. I used to look away when we are on the floor, trying not to make eye contact. I didn’t want them to think I was staring. Now I look at them and smile. I want them to know we are rooting for them. It’s one of the few situations in life where we are all on the same team.
My heroes are the nurses and doctors on the oncology floor that go through this on a daily basis, dedicating their lives to helping these kid’s battle this terrible disease. Looking for the perfect treatment, looking for a cure. I have so much respect for them. And of course, my little guy is my biggest hero. His strength and smile keep us going. He is my inspiration. He’s the strongest little guy I know. I stare at him in amazement. Between the surgeries, the treatments, the scans, he’s always smiling. He’s are our little superhero.
I’ve also learned that there are billions of government dollars spent on cancer research. However, only 4% is earmarked for pediatric cancer. 96% of all funding comes from private donations. 15 years ago, we would have been raising fund for Shane’s hospice care. Today, because of research we have the ability to fight for Shane’s Future Days and every other kid that ends up on the Oncology floor.
I don’t know why Shane was chosen, but cancer messed with the wrong family. We’ll be forever tied to CHOP and we are going to do whatever we can to raise awareness and help build upon the progress going forward.
Thank you and god bless.
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!