About
Shane’s Future Days is a 501(c)(3) volunteer 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
What is Alveolar Rhabdomyosarcoma?
Click below to learn more about this rare childhood cancer and what we can do to fight it.
What does your donation goes towards?
Rhabdomyosarcoma is currently non-curable pediatric cancer and your donation goes directly to the research to help fight it.
Happy Independence Day!One week from today, Shane will be one. It is so bittersweet. I haven’t posted in awhile because we have been enjoying some family time after his last chemo session. Shane gets two weeks off (no chemo, just blood counts). We went to CHOP last Wednesday and after talking with his doctors, we went home and returned the next day. He had a bone marrow biopsy Thursday and then completed his last 3 drug chemo treatment of Round 1. We left late Friday since he has to wait 24 hours to receive a shot that boosts his white blood cell count.This Wednesday we went in for his blood counts and wound up staying from 9:30 until 4:30 because he needed a blood transfusion. Yes, it takes that long. His big brother came along and we were a bit thrown off by having to stay, but Chase did great. He helped Shane cruise around the clinic and met new friends along the way. He did some canvas painting and participated in CHOP’s new Sibology program. Shane looks great. I admit he was looking pale and we started to call him “powder.” The transfusion brought some color back to his cheeks and more energy, if that is even possible.We got good news from the biopsy and Shane will continue with his same chemotherapy schedule at the same dosage. We are still in discussions with doctors as to any more changes in his treatment for Round 2.
Thank you for your comments, emails, texts and calls. We are overwhelmed by the amount of support and touched that our little guy has won so many of your hearts.
Tomorrow we head back to CHOP for Week 13, the end of Round 1 of treatments. We will be inpatient since it’s a three drug cocktail requiring an overnight stay. It’s the harshest of his treatments.
The oncologists will meet and discuss his progress and case to make the best decisions for his next round of treatments. One day at a time.
Wish us luck, as little man is on his way to walking up, up and away! It’s going to be challenging to keep him entertained during the treatments, as he is more interested in cruising and pulling things apart. It’s exciting for us to watch, since he could barely sit upright anymore by the time of his diagnosis. With his first birthday weeks away, we are eager to see how much more he will be doing to signify this huge milestone.
Thursday was the day. We are at the 12 week mark, a little less than a third of the way through treatments. This was the day we get to see what kind of progress has been made. Shane was scheduled for a Pet Scan, CT Scan, an MRI and a round of chemo. That’s a lot for anybody, especially for an 11 month old baby.
The scan took about 3 hours in total. He was shuffled from one machine to the next through out the hospital. Shane was sedated for the scans. Unfortunately every time he is scanned, he is sedated. Once the scans were complete, we were called back to the recovery room. He was a little out of it, but he greeted us with a huge smile. Then he ate like a champ.
The results are in. Shane’s tumor has been reduced to fibers. Nodules in his lungs and armpits have been reduced in size, signifying that the treatment is working. We were told from people that have gone through this, to celebrate any victory, no matter how small. This is a big victory for us. We still have a long road ahead of us, which is why we are taking this one step at a time.
He hasn’t beaten this yet, but we’re traveling down the path. You have to start somewhere.
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.