In April of 2014, our world turned upside down. Lylah, who was 2 at the time was feeling bad. She had a tummy ache and loss of appetite. We didn't think a whole lot about it because 2 year olds go through phases of not eating much to eating everything. But this time was different. Lylah didn't even want to be outside and she absolutely loved the outdoors. So Thursday April 11th, Katie took her to see Brandi Lambert at Faith Family Clinic, she sent her for an ultrasound the next morning and that evening, we were in Memphis at Le Bonheur. We were told that Lylah had Neuroblastoma. To hear that words just completely knocks your feet out from under you, and takes away every bit of oxygen in your body. Your heart completely breaks. You are just devastated. I remember this one doctor in the ER saying that Lylah has cancer just like it was nothing. I don't remember her name and don't even want to. Then 2 doctors from St.Jude came in to see us. They were so sweet and kind and gentle with Lylah. They told us, they weren't sure but the signs point to cancer but wouldn't be sure until they did more test.
Dr. Alexander (Lylah's favorite doctor) was one of the Doctors that came to see her that night. I was later told that he specially asked to be her doctor because he fell in love with her that night at LeBonheur. And so a special bond is born :)
St.Jude does everything possible to help the parents as well as the kids. They know they can't take all the stress and burden away but this is what they did. They treated Lylah at no cost. All treatment, medicines, clinic visits, medicine room visits, syringes, gauze, everything...you name it, no cost. They gave TJ and Katie a place to live and gift cards for food...no cost. The assigned social workers for the parents and child life specialist to help the kids going through treatments to make them as happy as possible. I have never ever seen a more caring group of doctors, nurses and staff members at a hospital my life. These people truly care about the patients and their families. They are all special people hand picked by God.
And so it began, April 13th, 2014, transferred to St.Jude
Diagnosis: Stage 4 High Risk Neuroblastoma
Lylah was at St. Jude for year and a half. She underwent 6 rounds of chemo, 13 radiation treatments, multiple major surgeries, physical therapy, bone marrow transplant, transfusions, nuclear medicine test, ct scans, x-rays, shots, ICU being intubated several times, seizures, the list just goes on and on. She was the strongest little warrior I've ever met.
One day in D clinic, Dr. Alexander came out to get a patient and of course had to come over and speak to Lylah. When he left and was waiting on his other patient, Lylah said "Dr. Alexander, don't forget about me!" and he said "Oh sweetie, I could never forget about you" (that makes me tear up). Another day when we were checking in at D clinic, Lylah got sick and was throwing up so they got her right on back and in a room and when they came in to check on her she was smiling and singing "no more monkeys jumping on the bed" :) Thanks to St Jude we got to see that sweet smiling face and hear that sweet voice for a year and a half longer than we would have if it had not been for them.
Sadly, Lylah got her angel wings on September 15, 2015 and our world will never be same. We miss you so much Lylah. This is all so hard to type without tears streaming down my face, so that is all that I'm going to say.
I'm doing this in honor of our sweet Lylah and in HOPE that one day there will be a cure and no child will ever have to suffer through chemo treatments and all the other test and procedures that go along with cancer. No parent, grandparent, and other family members will have to endure the pain of watching their sweet innocent child go through that.