As we jump into another September, with school starting and fall just around the corner, we also launch the start of both Lymphoma and Childhood Cancer Awareness month – a group of diseases that we at CareAline are all too aware of already.
Childhood cancer awareness month is an especially important month for CareAline, as it was Saoirse’s diagnosis of Neuroblastoma – and aggressive pediatric cancer – that led to the original need and development of what would later become the CareAline sleeve and wrap.
Just months after my own Hodgkin’s Lymphoma diagnosis, 11-month-old Saoirse was diagnosed with stage 4, high risk Neuroblastoma. We were blindsided. We went from the ER up to the oncology floor of Boston Children’s Hospital and signed consent forms for Saoirse to start chemo the following day – within less than 24 hours. The consent forms were easy to sign – half of the drugs were the same ones that I was on for my own cancer, so we knew the side effects and the risks associated with them – we also knew the need. With that she was headed down to surgery to have a PICC (peripherally inserted central catheter) line placed so they could start her on morphine and other medications and begin her chemotherapy. To Saoirse, that line was everything from a teether to a drumstick – not the medical device that it actually was – and her nurses stressed to us the importance of keeping it clean and intact to avoid infection. In fact, that line was more of an immediate threat to her life than her cancer. The nurses taped it down, and her skin became irritated, and she pulled and scratched at the line. They recommended putting a sock over it, but I felt like I could make something a little more functional for her so that she could go back to playing and being a kid.
The sleeve I made was easy for us to put on, and for the nurses to have access to her lines. Saoirse immediately left her line alone, and she went back to playing, and we as parents could relax a bit knowing she wasn’t going to pull it out. I repeated the process for her central line – creating a chest wrap that kept it out of her diaper. But it was when other families, nurses and doctors started asking us to make sleeves for them that we realized that this was a universal problem, and not a need unique to our family. When those families and nurses kept asking me to make more, I knew I had to get these into the hands of every patient with a line. The hospitals needed this for standard of care so patients and families didn’t have to figure it out like I did. And the rest, as they say, becomes the last 10 years of CareAline and our efforts to change the standard of care for both pediatric and adult patients with PICC and central lines. All while grieving the loss of Saoirse, and battling my own relapsed HL.
Neuroblastoma is a notoriously aggressive cancer. The most common, extra-cranial (non-brain) solid tumor in children under the age of 5, there are only about 700 new cases diagnosed each year in the US. Diagnosis is most often at advanced stages, with metastatic disease, and while children have approximately a 50% cure rate on first diagnosis, relapse is almost guaranteed to be fatal. Children with an NB diagnosis embark on an at least two year regimen of chemotherapy, surgery, stem cell transplantation, immunotherapy, and maintenance drugs to help prevent relapse.
For childhood cancer families, the journey is long, overwhelming, financially devastating, and too often tragic. Funding for new therapies and improved protocols comes almost exclusively from private funding – often times from impacted families doing private and public fundraisers. Awareness is also mostly raised by families who have been forced into awareness by a personal connection to a child who has had a cancer diagnosis. More needs to be done to help better treat, and ideally end, these diseases (childhood cancers encompass a group of more than 12 unique diseases and hundreds of subtypes) so that children no longer have to suffer through toxic therapies and lifelong health effects.
In honor of Childhood Cancer Awarenes
s Month, CareAline is highlighting our CARES Give Back partners that work on the frontlines daily to combat the effects of childhood cancer on families. You can read more about each of them by clicking the links below. This month we will give back a portion of all our sales to our partner organizations. Please read more about them, and use one of the unique codes (find them here) to support your favorite organization when you purchase products in our store.