October 18, 2016 is the day that will forever be marked in our family's history. A few weeks past her 4th birthday, Layla began to complain of a sore neck and occasionally complain of a headache. One Friday evening she began to vomit on and off, but with increasing frequency over the weekend. By Monday, I had an appointment with the pediatrician, but it was brushed off as a stomach bug. The next morning, I gave into my gut feeling and took Layla to Children's Hospital where I rattled off the list of symptoms to the nurses and doctors, also mentioning that I noticed a slight imbalance in Layla's walking over the past 24 hours. With a concerned look, the ER doctor ordered a CT scan....and we waited.
Through a sheer act of God's grace, Layla's dad joined us only minutes before the doctor returned with news that we were NOT expecting. The CT scan revealed a large mass in the back of Layla's skull and transport was on it's way to take us to the Children's campus downtown. In utter shock, the two of us began to make phone calls and arrangements for our 18 month old son to be picked up from school.
When we arrived downtown, a team of neurologists was waiting and a room was being readied for her in the ICU. Over the next 6 hours we spoke to countless physicians and nurses, signed more paperwork than when we bought our house and put our child in the hands strangers.
The first step in the process was to insert an external drain into her skull to relieve pressure from the fluid that was building up and causing her headaches. Early the next morning, Layla underwent surgery to remove the mass. For 5 hours we waited with friends and family, praying and talking while we waiting for our pager to let us know the surgeon was finished. "Good news", we were told. The tumor was fully removed and everything went as perfectly as it could have. "Next, you'll meet with the oncologist". It was in this moment that reality set in - Our child had brain cancer.
Layla's recovery from surgery was complicated by her body's inability to start reabsorbing her cerebral fluid on it's own. We spent 3 additional nights in the ICU watching Layla's oxygen levels closely and seeing her show signs of Posterior Fossa Syndrome. She lost most motor function and the ability to speak over a period of 24 hours. There are only a few things on par with knowing your child has cancer and, for me, this was one of them. Our bright, happy and active 4 year old couldn't speak, couldn't move, couldn't come home.
For 2 weeks we stayed at the hospital while the doctor's slowly allowed her brain to adjust to a normal level of cerebral fluid. Her external drain was removed and her port for chemotherapy was implanted in her chest. On November 1st we went home, knowing we would return on the 15th for her first round of chemotherapy.
Within days of being home, Layla began to regain her speech and slowly some of her gross motor function. It would be another two months before she walked on her own again, but those small improvements every day gave us all such hope and relief. We've met so many kids along the way who struggle for months or years to regain their mobility and we never lose sight of her miraculous progress.
We returned to the hospital on November 15th to begin the first of 4 rounds of high dose chemo. The plan was 2 weeks of inpatient chemo (hospital 3 days, home 4) and then a 2 week break. Unfortunately, during each of the 4 rounds Layla would spike a fever on week 3 and we'd get a bonus stay at the hospital. Those 16 weeks were brutal on everyone as Layla and I stayed at the hospital and dad and brother held down the fort at home. By the 3rd round we had all had enough, emotions were running high and patience thin.
16 weeks came and went (praise the Lord!). We had a short break at home before radiation started. Every weekday morning for 30 days Layla was sedated for an hour while she received treatment. She would wake up, eat breakfast, and most days headed to school.
On May 31st we had a routine MRI before starting maintenance chemo at home. From our perspective we were in the final stretch and the hard part was behind us. Once again, our world was turned upside down when we discovered that Layla had new tumor growth in both the brain and spine. Instead of starting the "easy part", we were thrust into making decisions about treatment. With each new protocol we were hopeful, but nothing seemed to be able to stop the spread. Throughout the summer Layla maintained very good quality of life and our family focused on doing fun things, like going to the beach or having ice cream after dinner. By her third post-relapse scan in September our oncologist used the phrase you never want to hear - "if there are things you want to do as a family, you need to do them now".
We moved our Make-A-Wish trip to Disney up two months and left for Orlando at the end of September. One week after Layla turned 5. Physically, she was still doing well and we had a wonderful week at Disney World. The day we were packing up to come home Layla began to complain of a severe headache. Within a few hours we found ourselves at the Children's hospital in Orlando where we were admitted to the ICU. Layla had suffered two seizures in the emergency room. We spent almost three extra days in Orlando before we were medically transported back to Dallas and an MRI showed even more spread of the disease. This time to her cerebellum and brain stem. The medical trial we had planned to start after our vacation was now off the table. There were no more good options for Layla.
We took on a hospice care team and tried to maintain as much of a normal life for Layla as we could. Unfortunately, things progressed quickly and we finally began to see the physical effects of the disease take a toll. Layla began to lose motor function and was unable to walk or feed herself. Eventually speaking became harder and she would sleep most of the day. On November 11, 2017 our sweet girl took her last breath and joined her Heavenly Father in her forever home. Our hearts are broken without her sweet smile and spunky spirit, but we know that we will see her again one day. Until then, our family will continue to work towards finding a cure. #LaylaStrong #cureMedullo
Layla's Legacy Foundation is committed to raising funds to cure Medulloblastoma and to supporting families impacted by the disease.