After removing the brain tumor Dakota could not walk, talk, swallow, hold his head up, move his limbs or track with his eyes.
Dakota was diagnosed with high risk medulloblastoma, a malignant brain tumor, June 2018 when he was 4 years old. His treatment plan included removing the tumor, 30 rounds of proton radiation in Jacksonville FL, and 6 rounds of high intensity chemotherapy at MUSC. After his tumor resection he unfortunately developed posterior fossa syndrome. He initially could not walk, talk, swallow, hold his head up, move his limbs or track with his eyes. Our once sweet, loving little boy now had emotional liability and had horrible mood swings filled with uncontrollable rage. We went to Florida for radiation 5 weeks after surgery and stayed there for 6 weeks. He learned to talk and walk again while we were there. Baby brother Jackson was born while we were in Florida for treatment. His pregnancy was high risk due to their sister being stillborn just days prior to her due date the year before. Having a newborn in the midst of treatment has been incredibly difficult. Dakota now has separation and severe social anxiety, emotional regulation problems and at times can be very difficult to manage. We have not been able to have anyone watch him since. I have not been able to work since he was diagnosed and Dad has taken off numerous days to assist with the kids which has essentially cut our income in half. In spite of it all, Dakota improves everyday in some way or another. He still has balance and coordination issues that recently resulted in a broken arm. He is primarily gtube fed because he still gets nauseous anytime he tries to eat. He does most things typical 5 year olds do now. His sweet, funny personality has returned and he has the most infectious laugh to go with it! He completed his treatment plan at the end of February and has no evidence of disease! We keep a busy schedule 5 days a week going to PT, OT, speech/feeding therapy and psych appointments. We try to somehow make life feel as normal as possible in the midst of all that. He is homeschooled and attends a co-op once a week with Mom and Cub Scouts with Dad. Baby brother Jackson has been the greatest blessing through all of this madness. He is Dakota's best friend and has been all of our light in the darkness. Jackson is a loving, adventurous guy that wants nothing more than to be just like his super hero big brother Dakota.
Thank you for taking the time to assist our family. Your generosity means more to us than we could ever express. Cancer brings an enormous emotional and financial burden but you have taken a huge weight off of our shoulders knowing that our boys will have an amazing Christmas.