Lylia: Providing a light at the end of the tunnel
In the face of disease, we often feel alone. As parents of a newborn fighting for her life and with no family in the country to lean on, we felt lonelier than ever.
Thankfully, during the past year, we had The Children’s as our second home, and donors who helped us to weather the storm and be by Lylia’s bedside without ever having to worry about unforeseen expenses.
We never anticipated our lives to turn upside down to the point where we would need financial assistance. I had a normal pregnancy without any signs of the difficulties to come…
However, at birth, Lylia showed an abnormally swollen stomach. Three days later, after several tests at The Children’s, the diagnosis came down like a hammer: our baby had a tumour called congenital neuroblastoma that had developed while she was in my womb. The doctors told us this was very rare, as neuroblastomas usually develop in children around 4 years old.
We were worried. What lay ahead? How would we care for her? I felt like it was the end of the world.
Lylia needed one of us to be by her side 24 hours a day. My husband, our sole breadwinner, had to take time off work to be there too.
Our baby was a mere 10 days old when she started her chemotherapy treatments. Although she was intubated to help her breathe, at one point, she stopped breathing and 20 health professionals rushed in to save her!
Throughout all this, life had to go on. Our 4-year-old son needed to be cared for as well. Our social worker at The Children's was a true blessing. Always one-step ahead, she took care of our needs, even before we had to worry about them. Thanks to the Tiny Tim Fund, she provided us with meal vouchers, parking passes and information on community resources that really helped us.
Beyond just our immediate needs, the Social Services Department was a pillar of moral support for us. We felt heard and understood – as if we had a permanent advocate on our side. This was extremely comforting as we navigated these rough waters.
When the doctors operated on Lylia’s stomach, it was revealed that the tumour was only 10% cancerous. Then, more good news: she was responding very well to the chemo, and after two sessions, her liver was no longer swollen. Lylia had stabilized and was finally doing well.
After a ten-month reprieve, another scan revealed that the cancer had spread everywhere; her bones, her lungs, her liver, her head… truly everywhere. I was in complete shock.
More chemo, radiation and immunotherapy lay ahead. In September, she had a stem cell transplant. Fortunately, our little fighter did well. She still has her ups and downs, but now is back to her active little self, spreading her amazing energy everywhere she goes!
As the holidays are fast approaching, I know how hard a time it is to be in the Hospital caring for a very sick child. I hope my story will inspire you to give.
Your donation is the best gift of all by supporting families like mine. Believe me, every dollar helps in easing this heavy burden we carry.
Narjis, Lylia’s mom
*Double your impact: make a #GivingTuesday donation, and the Cole Foundation will match it up to $25,000.