Survivorship 14 years after a brain tumor diagnosis is a blessing. While life continues and many days seem “normal”, holding your toddler while being told that he has a 40% survival rate is a devastating memory one can never shake. We were strong those months in the hospital, but to this day, the smell of the hand soap, the specific ring tone of the phone, or beeping of machines can transform me to a time of fear and uncertainty.
People know the trauma of the treatment and the fear of the unknown. One aspect that often gets left out is the huge impact this has on one years later. Our son, who is now 16, has significant hearing loss, receives special education services, and his growth has been significantly impacted. Often those on the outside think that once treatment is done, the hardest part is over. As my son could tell you, there are many challenges that come after treatment.
The greatest thing we have learned from cancer is that there is hope. Our son’s attitude and presence each day is a blessing. He exudes hope, and he works ten times harder than most to achieve the same simple aspects of life, but he never gives up. He has learned to walk three times, he has learned to cope and adapt to his hearing loss, and he has found ways to deal with the educational challenges. Some of our greatest hope is the improvements and advancement in treatments since his medulloblastoma diagnosis so many years ago. Survival rates are improving. Less invasive treatments are available. There is hope for a cure in the future, and we are so thankful for the research being poured into this area.