Childhood Cancer Awareness Month
September marks many things. Endings. Beginnings. Back to school. Change in seasons. It also marks an important awareness month which is Childhood Cancer Awareness Month.
Here are a few facts about childhood cancer.
– The average age for a child to be diagnosed is 6. My daughter was 5.
– Childhood cancer is the number one disease killer in the US.
– 1 in 5 children diagnosed with cancer in the US will not survive.
– Childhood cancer research receives just 4% of the annual budget from the National Cancer Institute.
My daughter was 5 when I discovered a small lump under her arm. The lump was odd looking. Bluish in colour, close to ½” in size. When she lifted her arm over her head, the lump was not movable under the skin, and pulled as though it was attached at all angles. I discovered this in July 2010 one night when I was giving her tickles under her arms before bed.
Here is where mama’s intuition comes in. I was told it was nothing to be overly concerned about. Her case was set aside, and I was told no one local would do a biopsy on a 5-year-old. We had a 6 month wait just for a simple consultation at a children’s hospital.
Our family friend, who is a general surgeon, did the biopsy on our daughter within days of calling him. We are forever grateful to him to squeeze her in and operate on her. Results were initially found to be inconclusive. The biopsy had to be sent elsewhere, and came back as Plexiform Fibrohistiocytic Tumor, a soft tissue sarcoma of intermediate malignancy.
We were referred to Toronto Hospital for Sick Children and she had a second surgery 2 months later to ensure clear margins. She was closely watched for 5 years. No radiation or chemotherapy is recommended for this type of tumor.
She is healthy and well and we still go once a year to Sick Kids hospital for a physical until she is 18 years old.
We are filled with gratitude and thankful for our health every day. I feel like nothing happens without reason, and this was a path for our family for many reasons which I won’t get into here.
If it weren’t for a mother’s blog that I found back then, I would have been more lost than ever. There was so little information to find on this type of tumor. I am a researcher and need to know everything – and this was back before I even went back to school for holistic health.
This mom connected me with another mom, and we formed a small group which is still active today, as we now have a Facebook group where we update one another, provide support, and knowledge based on experience. Again, filled with gratitude for this group.
I personally built a website to increase some awareness and provide knowledge on this type of tumor based on experience. People still contact me through this site today. I thought of other parents out there in the same situation as me, and created this site for that reason. I’ve met some amazing people and have even connected them with our surgeon at Sick Kids hospital. https://pfht.weebly.com
This month, I’d love to bring awareness to a couple of smaller fundraising groups. They are linked here:
– My old roommate from university lost his daughter years ago to Leukemia and runs this triathlon group “Team Carmen” every year in her honor.
– Lily is the daughter of the mom who I initially found through her blog
– Jennifer Mallory is the mom who’s blog I found when my daughter was diagnosed
– Li Fraumeni Syndrome is the disease linked to that mutation that causes cancer cells to grow out of control. This organization was founded by Jennifer Mallory. Jen and all 4 of her children have this. Jen is currently living with metastatic breast cancer.
I thank you for reading and supporting these causes. May you and all your loved ones go in health.