2018 Just for J Yoga North Texas Recipient
Paige was diagnosed on May 2, 2017 with DIPG (diffuse intrinsic pontine glioma). About a one month prior to diagnosis Paige had been complaining about numbness in her left leg and arm and dizziness when she stood up. When we took her to the doctor they ordered an MRI and the following day we were sent to Cooks Children’s Oncology in Ft. Worth, Texas. We were told that she had DIPG, which is the worst tumor and diagnosis in existence for children. DIPG is an inoperable, incurable brain tumor with a 0% survival rate and a life span of 9-12 months from diagnosis. The only “treatment” in the US for the last 60 years is 6 weeks of radiation to hopefully get more time with your child, not actually treat the disease. On May 2, 2017 we were told that our child would die and that we needed to make as many memories as we could quickly and prepare to say goodbye because there is nothing that will save her.
In June last year Paige completed 23 of the 30 days of radiation. She was unable to finish radiation due to side effects of radiation and/or steroids and ended up hospitalized. Paige spent the month of July in the hospital and we were told two times during that month that our child was dying and had days left to live. Paige returned home early August on hospice with a few days left to live but at home under her parent’s care Paige began to become more alert and awake every week. Over the next 30 days, DIPG took away the ability to use her left arm and walk on her own. The worst thing for Paige is that DIPG has taking away her physical abilities, but she is still an independent 14yr. old girl on the inside. She loves to joke, watch movies, be with her family and go out to dinner, which she is able to do occasionally with assistance from her parents. She is fully reliant on others for her day to day life activities and as a 14 yr. old girl that is difficult. She wants to play volleyball, vacation at the beach, walk to the bathroom and just be normal.
In February we were able to get another MRI and to the doctor’s amazement Paige’s tumor was 15-20% less active and smaller than it was at diagnosis in May 2017. They are surprised and happy to see that she is doing so well, and they don’t really have any reason for her success other than she must have responded well to the radiation along with her own immune system. Until we do another MRI, we do not know if it is growing, sitting idle or shrinking. Paige will be eligible for reirradiation if the tumor shows progression after 9 months from her last radiation treatment, which is in a couple months. We are torn about that because it means that our child must again be strapped down to a table by a form fitted mask to her face and head daily. It also means that we could end up hospitalized again and will we be lucky enough to leave with her alive? There is no right or wrong decision because there is nothing to fix it, nothing that works and ultimately every child dies. We as a family continue to talk about her options, her medical path and journey and we decide those things together.
Paige has many supporters through her school, family, community, charitable foundations, Facebook followers and the DIPG community that pray for her daily. Thousands of people pray daily for her to receive a miracle because we know that is the only thing that can save her. These same great people have given financial contributions that have allowed her mother to leave full time work and become her fulltime primary caregiver. The generosity of others has allowed her family to rent a wheelchair accessible van, not worry as much about medical bills piling up and hire additional help a couple days a week.
Being chosen by the Just for J foundation is an honor and any contributions received from the Poses for Paige event in May will continue to allow us to provide Paige with additional in-home care, her van rental and any day to day medical expenses or adaptions that need to be made to our home for her accessibility. We will never be able to repay your organization for thinking of our family when it came time to accept applicants. We are humbled to have received such a blessing and want you to know that it is appreciated beyond words or measure. Paige is our only child, she is our world, she is the P to our PB&J and a world without her is unfathomable. We will never stop praying and hoping for a miracle for her because this world needs more children like her in it. We are thankful and blessed to be her parents and grateful for every day that we get to be with her. -2018
On April 11th 2018, Paige left this world and joined our father in heaven, where we know she was given a perfect new body. One that will never know the pain of DIPG. We have not had the opportunity to meet Paige, but as we learned her story and began following her journey she became one of ours. We can't wait for our opportunity to meet her one day!