Ali has Osteosarcoma ( bone cancer) that has metastasized to her lung. When she was 10 years old she was diagnosed and was told she would need a left leg amputation, chemo and radiation. Prior to her chemotherapy they told us that she would have nly about a 13% chance of survival, Ali didn’t care and said she knew she could do it ( shes the strongest kid I know).
She underwent inpatient chemotherapy for approx. 1 year. At that time she became so sick from the drugs that we had to stop her treatment. Her frail body just could not take any more and they were afraid that if she continued she would die from the treatment before the cancer would take her. We stopped the treatment, prayed a lot and hoped for the best possible outcome. At that time they decided a total left leg amputation would be the route to take in order to remove the cancer despite the chemotherapy not shrinking the tumors as they had hoped. Her left leg was amputated and replaced with a indwelling prosthetic device and her skin was wrapped around the outside. This new type of prosthetic is not yet FDA approved in the united states but we went for it anyway, It is called a Stanmoore Implantable Prosthetic, the device is drilled up into her hip area and down into her ankle allowing her to keep her hip and her own foot. Not to mention it has a small gear shift inside it that can be lengthened to allow her to essentially “ grow”.
It was a very hard and difficult surgery for her and has left her with the inability to walk except for only a few feet, drop foot, and she endured 21 surgeries within a 8 month period of time. She developed blood clots in her left arm, another in her jugular vein and 2 in her heart which are still there despite all the blood thinners as she has something called factor 5 lyden, a clotting disorder. After her last surgery we were discharged home and have prayed every day for the best. About a year ago we were notified Alis cancer had spread to her lung and she had to have half her right lung removed, this was a huge upset and Ali became very depressed and suicidal. She has not been able to go to school because she’s just to fragile health wise to be around a lot of other children. Her depression became even worse as time went on and she started cutting herself to ease her emotional pain and the pain that comes along with bone cancer. A few months after her partial lung removal we were given more terrible news that the cancer had again showed up on a new CT and was back.
Ali is not able to have the remainder of the lung removed as it would not leave her enough capacity to survive and being put on the transplant list is not a option due to her cancer diagnosis. Alis a fighter though and is not willing to give up at all, despite all the odds she continues to keep moving forward. Shes now 6 years since the day of diagnosis and is a advocate for other children fighting for their lives just as she is, She believes that you only fail when you quit trying and all shes trying to do is live. Its as simple as that. She follows other cancer groups, gets inspiration from watching other succeed and follows you, she loves the savage kindness that you display and she is exceedingly smart, kind, and has enough hope for everyone in her heart. She has a motto “ everyday people can be heros everyday” she believes that as long as your hope is stronger than your fear, than you have nothing to be afraid of. Ali is now 16, still fighting to get through each day but never ever gives up !!
Thank you again for all you Tom, you inspire so many people in so many ways !!