Carson’s story continues below:
Our family went to a church service titled "Why not me". The message was about going through life saying why not me verses why me? Our family was very blessed, I had married my high school sweetheart, had five amazing sons, and was living a great life. We knew the message was meant for us to hear and we were being prepared for something serious to happen to our family, and we should go through it saying, "Why not us". At the time our fourth son Carson was three years old and started seeing angels. He described them in detail and talked to them often. A couple months later Carson started getting sick and we went from doctor to doctor for a couple months, until Friday the 13th April 2007 when he was diagnosed with stage 4 high risk Neuroblastoma. Carson was covered head to toe with cancer and couldn’t walk or barely lift his head. Our hospital sent us home with no hope and gave him less than thirty days to live. We immediately had hope when we got to St Jude!
While at St Jude, Carson learned to walk again with the help of Physical Therapy and Occupational therapy. He also had an audiologist and speech therapist as he lost some of his hearing as a side effect of the chemo. Carson received state of the art hearing aids from St Jude which we didn't receive a bill for even though insurance didn't cover them.
We lived in Memphis for 15 months with free housing, food, transportation and absolutely no bills- durin that time Carson had 13 rounds of chemo, a bone marrow transplant and a month of radiation. One-night Carson woke me up saying "Jesus loves me, Jesus loves me", and the next day he told us that Jesus held him in his big hands and told him he loved him, and they were healing hands. We were then blessed to get the fabulous results that Carson became NED - No Evidence of Disease. Carson talked about his angels throughout his treatment, but when we were about to go back home, he said Jesus told him the angels work here was done and they were leaving to help someone else. At home we had another 16 rounds of oral chemo and Carson would go back to St Jude every three months for checkups. When we got moved to six-month appointments, Carson cried because he didn't want to wait that long to go back to his home away from home.
I was so thankful to St Jude for saving Carson's life, and I really wanted to give back. So, when I was asked to join the newly-formed St. Jude Patient and Family Advisory Council, it seemed like the perfect way to give back.
The PFAC is a board made up of parents and staff, which works on partnering with the hospital to give feedback and create programs to improve the patient and family experience. Working together on behalf of children and families, we have accomplished many things in the past 10 years, such as: creating valet parking for patients, starting a Parent-Mentor program including bereaved parent to parent mentoring, along with the creation of the state of the art Quality of Life and bereavement support program.
The PFAC also helped with design and construction of the new inpatient rooms and proton radiation beam facility. One of my meetings coincided with Carson's scans so we went to Memphis together. Carson joined me when we toured the new facility and Carson was the first St Jude patient to test out the musical stairs going to the basement. The PFAC parents thought it would be fun for the patients as they had to go to the basement for the state of the art proton beam radiation, which is the first proton therapy center in the world dedicated solely to children with cancer.
We also started another parent-led council made up of St. Jude staff and bereaved parents who are tasked with helping to bring about positive change in the areas of end-of-life, grief, and bereavement. We teach classes on end-of-life and bereavement issues to nurses and psycho-social team members. We teach doctors how to deliver difficult news to families in a caring and compassionate yet truthful manner. The feedback that we get from staff members says that being able to interact and learn from bereaved parents is the most impactful thing they have ever been a part of. We are expanding those efforts by hosting our 2nd annual International Pediatric Palliative Oncology Symposium (PPOS) this September in Memphis. We are also working with other children's hospitals across the United States to help them start their own Quality of Life and Bereavement Support programs.
Carson showed no evidence of disease for over eight years, but unfortunately in November of 2015 he relapsed. When I told him his cancer was back, his response was " I guess I have really bad luck, but God healed me once and he can do it again, and I'm ready to fight!" He was twelve years old, and Carson immediately chose to be at St Jude for his treatment. St Jude airlifted Carson to Memphis TN on Thanksgiving, and we started chemo that day! I knew I needed the Quality of Life team on my side, not because I thought Carson was going to die, but because of the work I had done on the PFAC. I knew the program was amazing and it would make Carson's Quality of Life better, and that the team would support me and my family through this challenging time.
My work on and with the PFAC came full circle, as I was now a recipient of the new Quality of Life and bereavement programs. Our QOL team helped throughout our treatment with pain management, balancing family and treatment, along with having a nurse come to our housing when Carson wasn't feeling well enough to go to the hospital. Carson had an amazing team to take care of his every need, so I could just focus on taking care of Carson.
Part of Carson's treatment when he relapsed was radiation, and again things became full circle when Carson was the first patient to receive radiation to the back, with hearing aids, and using two beams instead of one in the newly constructed proton beam radiation facility. Carson was using a walker at the time, but he always used the stairs instead of the elevator because he loved hearing the different sounds the musical stairs would make.
St Jude was amazing when we were treated in 2007, but the partnership with CEO Dr Downing and the FAC has made it even more outstanding. When we would be discharged from the hospital 10 years ago, I would need to make several trips to the car to unload our suitcases and medical supplies, then come back and get Carson, stop at the gas station and grocery store with a sick child on our way back to housing. Now I can call a concierge to go fill my gas tank and get my groceries, the valet to bring my car to the entrance of the hospital, a ready runner volunteer to bring me a wagon and wheelchair and help load and unload suitcases and supplies. If I need to run errands I can call Helping hands to watch my child, and in the cafeteria, I get help from the Kay Kafe volunteers who carry trays and help you navigate in the cafeteria.
Did you know St Jude has a prom, kindergarten graduation, Survivors day and Day of Remembrance for bereaved families every year. They have a school with one on one teachers, along with starting a preschool this year. St Jude has a music therapist who taught Carson to play keyboard and recorded his heartbeat to music. A child life specialist who helped Carson create syringe paintings for his family as Christmas gifts along with creating a cherished thumbprint charm for me. St Jude has a dentist and eye doctor at the hospital for checkups and problems. St Jude is consistently rated in the top 100 companies to work for. St Jude CEO Dr Downing invites families to have coffee and chat with him every month. The patients and staff all eat together in the cafeteria. It costs St Jude about $2.4 million dollars a day to run and it now has 7 affiliate clinics throughout the United states to help more patients, and oh by the way- patient families pay nothing!
St Jude is outstanding, but unfortunately Carson's cancer wasn't responding and spread to his lungs and liver. Carson wanted to take a six-week trip across the country visiting national parks. Our incredible oncologist at St Jude created a new protocol just for Carson so he could make the trip. The chemo had never been given to a child before, but St Jude made it happen in two days, which would normally take months to years to be approved at most hospitals. Our QOL team helped make our "Trip of a Lifetime" possible by setting us up with supplies, chemo, and blood draws and checkups along the way. They were in constant contact with us throughout our trip and took care of all our needs while we were on the road.
We had traveled five weeks with our five boys and had the best family time ever! But then on August 11th, 2016, I woke up and found Carson unresponsive. We started CPR and called 911 but after 90 minutes of CPR the ER doctor told us he had to call it. We asked to pray as a family first, and during our prayers Carson's heartbeat started again and he stabilized. The ER doctor said it was miraculous and Carson was a real fighter. At that time each of my boys and husband talked to Carson. I was the last to talk to Carson. I thanked him for fighting so hard to come back to us. I told him I loved him, but that it was okay to go to Heaven and be with Jesus. At that moment his heartbeat stopped, and he was gone. As you can imagine, it was devastating, and we needed our QOL team more than ever. They consoled us and stayed by our side to help expedite all the arrangements to get Carson home. I never want anyone to experience the heartache and grief of losing a child. I miss my son so much and I am going to continue to fight to end childhood cancer so other parents and families don't experience the pain of losing a child. While St Jude couldn't save Carson, they gave him ten more years, and the best quality of life possible, and they continue to support our family through the most difficult time of our lives. Because of my work with the St Jude Dream home, I learned that Carson had started seeing angels again before he relapsed, and it gave me great peace to know angels were with him during his difficult journey. It also explains why he never complained, and would often say "It's not that bad, it could be so much worse"
St. Jude is actively finding better, more successful treatments for kids with cancer and sharing those findings with hospitals all over the world. So much so, that overall 80% of kids with cancer are surviving.
But my son was in the 20% who did not survive! Your support also helps to care for grieving families so that they can survive after such a devastating loss. And now your support is helping us to reach out beyond the walls of St. Jude to help other hospitals around the globe to care for sick children and grieving families everywhere.
" Give thanks for the healthy kids in your life, and give to those who aren't"
Your support of St Jude is helping us to make a difference. Thank you.
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