I’d like for you to meet Evan.
Evan is now seven years old. When we started this page he was just four. With a diagnois so poor we unsure how this would turn out, a fact that is still true today.
The child of a single mother, Evan is adored by his mom, Aunt's, Grandparents and Cousins. His dark eyes shine with mischief and a zest for all the wonders of life, and he is a nervous little ball of boy energy. His wide, toothy smile and inquisitive nature touch the heartstrings of anyone blessed enough to be around him. He’s all boy, and all things that are awesome about a child. As many of you know, times are hard for a single mother, and Evan’s mom lives with her sister and his little cousin as she struggles to make ends meet. You’d never know the hardship by looking at Evan’s bright, bubbly, happy personality.
In September 2014 Evan was diagnosed with Neroblastoma stage 4 High Risk. Evan has so much going for him joys of childhood, the trials and angst of the teen years, the future of growing up and one day starting a family of his own. The lazy, crazy days of summer were waning fast in August 2014, and school began. Life was pretty simple for Evan: playing with his cousins and family, going to school, playing with friends, spending time with his grandparents and being spoiled rotten. Then one day, he began to walk with a limp and complained that his hip hurt. Tests revealed high inflammation levels; doctors gave him Tylenol and told his mother to keep an eye on his condition. Instead of getting better, the pain got worse. A MRI found fluid in his hip, so he was sent home with Tylenol to cope with the pain. Again, the pain got worse and Evan was admitted to a hospital. The inflammation levels had doubled, and an oncologist who looked at the MRI found irregularities in the bone marrow. The oncologist thought it could be a bone infection, and ordered another MRI.
The results were devastating. The oncologist said it might be cancer.
On Saturday, September 20, an ultrasound was done. An hour after the ultrasound was completed, the little family got the worst news they could possibly hear: in addition to the irregularity in the bone marrow, there was a mass on one of Evan’s kidneys intwined with the spleen. A CT scan and it confirmed the absolute worst-case scenario.
Evan has stage 4 neuroblastoma, a rare form of genetically-caused nerve tissue cancer that is only diagnosed in 650 cases per year in the US. There is a tumor affecting his kidneys and spleen intertwined that it can not even be biopsied. It is deep in his bone marrow and is freely developing inside his tiny body. Because of Evan’s age and the stage of the cancer, Evan is essentially terminal.
Chemo started on 9/29/14 and in October 2014 he went to Minneapolis, MN for a bone marrow harvest followed by a transplant in the spring of 2015 . It's been up's and downs. Radiation and chemo, imuno therapy. A brain bleed in May of 2016 with remission after. After a quick trip to Oklahoma to visit the cousin's and a dig at Salt Plains for salt crystals. Another MRI found 3 tumors with in his head. The largest is the cause of the bleed. Tremors effected the left hand, Evan's large tumor affected the motor function part of his brain, causing loss of use in the left hand and leg.
Radiation and chemo were ordered now Evan is considered "relaped" His Make a Wish Trip was pushed forward for the small family to attend Disney World before Evan started the rounds of treatment. Spring became summer and summer was full of fun, exploding watermelon's, mento's coke fountains and Cousin's from Oklahoma. Then fall, finishing up radiation moving on to chemo. More scans and bone marrow biopsy's. Tumors still there, but the leasion on the right leg is gone. The largest of the tumors is smaller. Fall means school and Evan is excited to see his friends from Tri Valley.
Time keeps moving for our family, the news we had been waiting six months for. We are going to Memorial Sloan Kettering Cancer Center In New York City. The comunity support is amazing. Tri Valley, Crooks, Colton coming together to support Evan and his Mom, Amy.
Arriving in NYC January 2nd 2017 a full week of tests and appointments. Working to adjust to the new life style we know is important for Evan. Learning a new routine so different then we have known for the last two plus years. The two smallest tumors are almost unfindable - almost but they are there. The largest was removed January 13th, a couple of nights in the PICU and then to room on Peds. Two nights, meeting the nurses on the floor. Morgan, Caroline, Rosemary and Megan. Totally the best ever !
Back to the RMH (Ronald McDonald House) more scans and appointments. Today Amy catches Evan's left eye twitching. Nero confirms it's a seizure - scans again and waiting. The brings us to where we are now. The waiting room of MSKCC.
In some ways waiting is what we do best, waiting for treatment, waiting for a cure. Wanting more time with Evan, who is amazing.
Update on Evan, was recently NED and remission as of May 2016, During the same month before the remission was anounced he encountered a brain bleed. Causing loss of function in his right hand. (has recoved use) At the time no cause could be found for the bleed. We now know what caused the bleed, one of three tumors in the brain. At this time further tests are being done and a plan of action is being formuated by his Oncology Team. Currently Evan is suffering spasms in the right hand and is starting medication to halt that issue. Within a few days Evan is heading out on the adventure of Disney, Sea World and Universal Studio's this is his Make a Wish Trip. Once back the new plan will be set in motion for his treatment. What will happen we do not know. At this time we don't have guess, we take each day as it comes and look forward with optitmism to the next.
Amy is no longer working at this time so she does spend all her time in care of Evan. Clinic, hospital and labs do take up much time during a week. Money raised does go local transportation costs, treats for Evan, day to day living expenses and family outings making those memories we find so prescious and rare. Evan is now 6 years old and will continue fighting, a battle that has almost gone on for 2 years.
Please spare prayers for Evan, his mom and all of us. Our heads are spinning as we try to cope with everything that has happened.
Thank you so very much, and God bless. We appreciate it all.
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