Day 29:
September is almost over, but our fight for awareness, research and assistance doesn’t end when the month does.
Thank you for reading our posts, liking our page, sharing our page and helping to spread the reality of childhood cancer.
We don’t just do this to give meaning to Shane’s life, but for all the children battling rare, currently non-curable childhood cancers.
So, today we ask if you have any questions for us?
Say his name to us. Acknowledge that our children had a baby brother.. Let go of the thoughts and practices of the past….they only lead to more complications.
Shane….
Day 27:
We present to you, a visual image of Shane’s tumor cells.
We are grateful for our collaboration with The Children’s Cancer Therapy Development Institute. Tumor donation and its research is a fundamental part of understanding Shane’s type of cancer.
Dr. Keller has said to me:
“Tumor donations, particular the tumors that defy all
therapy, are the key to developing the right new therapies. Hardly anything could be more important. The RD cell line was made in 1968. That’s a long time on plastic. The same for Rh30, made in 1987.
Yet all therapies developed between 1990 and 2015 used RD and Rh30. It’s just so much better to use contemporary tissues, cell lines, and models… from the hardest to cure RMS.”
Day 26:
On Sunday morning, we learned of the tragic passing of Florida Marlins pitcher Jose Fernandez in a boating accident.
Not only is Fernandez considered to be the best young pitcher in baseball, but he is known for his charitable giving within the pediatric rhabdomyosarcoma community.
In 2013, Fernandez was named Rookie of the Year. With little publicity, he kindly donated all of his award money to the Live Like Bella foundation. The money was used to fund preclinical alveolar rhabdomyosarcoma research projects. In 2014, Fernandez donated an additional $34,000 to the foundation who used it to fund a research trial at Oregon Health & Science University. Fernandez later joined they board of directors of the Live Like Bella foundation.
Not only did the baseball world lose such a young talented athlete, but the pediatric rhabdomyosarcoma world lost a great, young philanthropist.
Day 25:
Two years ago, we gathered by the Swann Fountain on the Ben Franklin Parkway surrounded by many family and friends.
It was the CHOP Parkway Walk/Run benefiting the oncology unit.
It was an amazing experience. Shane was doing well and we were so full of hope and determination. It was perfect and the feelings and emotions of that day are indescribable.
It is a memory that we need to preserve.
So, while we are not physically there, we are sending so much love and support to our friends who are there. Stay Strong Antonio, Team Nate, Team Shane, and Hurrikanen, we may not be there, but we are forever in your corner.
As a family who has been through a diagnosis and whirlwind within the cancer world, we have found so much support and love from our community.
When we heard about a young girl from our community needing prayers and support we wanted to help.
The ’07 VE Gunners and ’07 PA Rush Academy teams are playing and praying for you Phil!
I was thinking about what to write about today and Ella reminded me of what it should be about.
Children grieve too. I’ve mentioned this.
The problem is people don’t always listen. The truth is my kids have been through more than I ever wanted them to. What I’m learning about both of them is that their grief is changing as they grow.
What we do know about their grief is like us, they want to talk about Shane and they want people to talk to them about Shane. Not all the time, but when they mention his name they don’t want to see people flinch or get uncomfortable. It’s a hard balance to have to explain to a 9 and 5 year old.
We are all aware that back in the day, people didn’t talk about losing someone. Some people never mentioned it again. Again, we have seen statistics of the effects of not talking about feelings associated with a lost one and how impactful it could be to one’s future.
This is why the PACT team and our child life specialist is so important. Kelly has allowed our children to express their feelings, not just through words, but stories, picture boards and experiments.
She has introduced the kids to two different books, “The Invisible String” and “My Yellow Balloon.” I would highly recommend them to someone who is struggling to speak to their child about losing someone.
Tonight, Ella asked me to read “My Yellow Balloon.” I wasn’t surprised. I could tell she was needing to hear it. She started a new school and has some hesitations. She finds comfort in having Shane and thoughts of him around her.
I read the book. On the last pages are pictures of balloons with names of people lost. She asked if we could go downstairs and draw Shane’s balloon. So, we did.
Paul and I took the kids to the Phillies game tonight. This was the first time I was back to the Hall of Fame Club since Shane was there.
He went twice. First time, he couldn’t walk yet, but the second he was strutting around the HOF club like he owned it!
He loved watching and clapping with the crowd. Good memories tonight.
Our magic number for CHOP was 101.4.
Once Shane was diagnosed and we had our “team cancer meeting,” they tell you you need to attend a cancer 101 course through the hospital. Whoever was going to be involved in Shane’s care was urged to attend.
The most important topic of that meeting was the fever. They even hand you magnets with 101.4 on it and all the oncology numbers you need to call if his fever were to reach that level.
When children have ports the risk of infection is higher. Some of these infections could be blood infections, which could be life threatening.
Looking at a lot of pictures of Shane, he is frequently seen around our home carrying his beloved thermometer. Lucky for us, he went 5 months without ever having a fever. In the cancer world, that’s damn good. His first fever was in September. If you look at him, he never looked sick.
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