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
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.
Can you feel it?
The hustle & bustle of the holidays.
I feel it too.
I want to put into perspective what some families affected by childhood cancer are feeling. What we felt a short 3 years ago. What we still feel in terms of our grief.
Some of the families we are helping this year are preparing for a wish trip, another has a child on hospice, one is bereaved, another a new diagnosis and one more facing a relapse.
Other families we know are entering their first holiday season without their child. Others have yet to celebrate the holidays even after 3-4 or more years since their child has passed.
Others are like ours and help other families and siblings affected by childhood cancer during the holidays.
It’s what helps when you are reminded of your lost child….
-a simple ornament
-the opening verse of your favorite Christmas song
-the traditions created, such as seeing Santa downtown
The list goes on….