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
For most, it’s the new beginning of another school year. Some parents are full of worry as their kids begin, hoping they like their teacher, find friends and flourish during the school year.
We have those same thoughts, but most of all September brings us back to the most difficult part of our lives.
September is childhood cancer month. It’s our time of reflection, and time to raise our voices and remind people that kids are dying everyday from a disease where there are not enough treatment options, not enough funding and not enough attention given.
We’ve shared this month with so many other families since 2014. It’s changed us. It’s shown us what is important in life. It has us fighting on a daily basis to make a difference for childhood cancer research.
Thank you for sharing Shane’s journey. Cancer is terrible at any age, but when it’s a child whose life barely even began, there is no comparison. If we don’t stand up for Shane and other children like him, who will?
*I will be posting every day for the month of September to raise awareness for childhood cancer. Follow us at: https://www.facebook.com/HelpShaneFightCancer/
Join us Saturday October 19th as we run, get muddy and have some fun for Shane’s Future Days at the Tough Mudder Tri State. Whether it is your first Tough Mudder or you have done them before, come join us for a great cause and experience. All ages and fitness levels welcome, it is not a race, we work together as a team to make sure everyone has a great time! We are running the ‘Tough Mudder Classic’ on Saturday. After you sign up below you will be able to join the team, follow the prompts in your confirmation email to join a team, and join Shane’s Future Days. If you have any issues, let us know and we will be able to email you an invite.
Don’t want to get dirty? No problem, donate to our cause here in support of those running for Shane’s Future Days. All money raised will go towards Christmas gift donations for pediatric cancer patients and their families. https://shanesfuturedays.org/donate/
Well, it’s March and being snowed in has given me more than enough time to reflect.
Thank you all for your comments on my recent post. I post as a healthy way to release my thoughts (I journal too). I do think that many of you who have followed our journey are curious and afraid to ask questions, so sometimes I feel like writing my entries here may help with that.
Some of you may be curious as to why March has such a significant meaning to us.
Did you know that the day Shane passed was the same day I met Paul? Yep, March 30, 2001 we met in Washington D.C.. That same day, 14 years later we would lose our 3rd child.
Shane was baptized March 2, 2014. His lumps were detected March 4, 2014. Our appointments with the pediatrician and CHOP general surgeon were March 5, 2014 and March 7, 2014, respectively.
Our whole rollercoaster journey through CHOP was in March 2014. His diagnosis day was March 28, 2014 after his biopsy March 26, 2014.
We fought. We had a blessed cancer journey with little to no side effects. However, on March 6, 2015 (my birthday) we had our last appointment at CHOP as a regular oncology patient.
Shane’s tumors continued to grow, even after 14 days of radiation and oral chemo treatments. There were no more treatment options left (legally).
What that really means…is as a parent you need to make the decision of whether you are treating your child for you versus impacting the quality of life for your child.
On that day, we left with Shane on hospice care. We were transitioned from regular oncology to the Palliative Care Team. As you know, the PACT team left a significant mark on us. Their child life specialist helped Chase and Ella through so much and we are forever grateful. This is why we help with their funding. To help other families through the transition and bereavement.
It’s also the day I contacted Dr. Keller about donating Shane’s tumors. To us, this was a way to fight even more. While we knew Shane wouldn’t make it, our wish was that no other family or child would have to go through what we did. I wish more people thought about tumor donation and the significant impact it has on research and the future!
So, that’s the synopsis of why March is so difficult. However, life is full of coincidences and dates. I am forever grateful to be Shane’s Mom. The dates are ultimately insignificant to the love and life that is in the present.
Grief is personal, random and undoubtedly changes.
For me, the first year was a blur. Dates and situations were triggers.
While I’ve come along way in terms of dates, there are always some that will stick with me… forever. My one dear friend still texts me every 30th of the month to say she is thinking of me and Shane.
In the second year, time softened the sharp edges of pain, but the sadness was greater. The realization was that THIS was our forever. Shane’s story has much sadness to it, but out of the sadness we have created greatness. For that, we are proud.
I was also pregnant (worrying, yet celebrating cautiously) and our first fur baby Monty was really sick. Dare I say it, but his symptoms were eerily similar to Shane’s. The hunger strikes, the celebrations at the little bits of food he could tolerate, his jaundice, his fatigue. It was too much to handle during such a sensitive time. I can say that now. It was really a lot to handle emotionally.
This year, I don’t know how I feel. Overwhelmed and distracted come to mind. Will needs me, but it’s not even March and I want to hide. I have lots to do, especially for the foundation, yet there are always things popping up and distracting me.
I see it in my husband and kids too. Ella asked just yesterday after dinner….”Do you think he will survive?” She meant Will. I’m not going to lie, it’s a hard one to deal with it.
It’s not the first time this topic has come up. It’s been naturally happening since my pregnancy. Honestly, I do tumor checks every time I change his diaper. I question myself on how old he will be when I can STOP doing it.
Our new family dynamic, grief, foundation events and angelversaries….March will be filled with many posts.