December 23, 2013 is a day, as a parent, we will never forget. It is a time of year filled with holiday cheer, but unfortunately we received a present no parent wants to receive for Christmas. Tyler, 11 at the time, was diagnosed with CANCER!!! Rhabdomyosarcoma to be exact. Rhabdo is a soft tissue tumor that can develop anywhere in the body, but for Tyler, it was in his left cheek.
For the months leading up to December 23rd, we had countless doctor’s appointments with urgent care visits, pediatricians, orthodontists, dentists, oral surgeons, ENT, neurologist and ER visits. Not just one trip to each, but multiple until we received the diagnosis. It all started with severe headaches we thought were associated with the new braces that were put on his teeth. The headaches continued for a month, then he lost feeling in the left area of his left chin.
After several trips and discussions with the orthodontist, we decided to remove ½ of the braces. Upon doing that, his headache pain diminished a little but the numbness spread up the left side of his face to his forehead. The second ½ of the braces were removed and the pain subsided but the numbness remained and continued to spread across the left side of his face underneath his eye.
A trip back to the pediatrician and a referral to an oral surgeon lead to an appointment for an MRI for further investigation. The initial MRI indicated something but was inconclusive so we were referred to a neurosurgeon where another MRI was scheduled. By this time, external signs of something not being right were evident. Tyler now had some slight swelling in his face as well as double vision in his left eye.
The day of the second MRI, December 23, 2013, was when Tyler’s world changed forever. A very large mass was detected in his head. This mass was pushing on 7 of the 12 cranial nerves which was causing the pain, swelling, and loss of vision and now movement of his left eye.
While being whisked away to the Aflac Cancer Center, we now had to try and digest the fact that our son has cancer. With a million questions and emotions racing through our heads, we tried to settle in for what was going to be one big life adjustment.
Tyler had a biopsy performed to determine the nature of the mass. The results were not conclusive as to what the exact type was but the facts that the mass was malignant were. After a few more days of testing, it was determined that Tyler’s type of cancer was Rhabdomyosarcoma.
Although Tyler has completed his 8 cycles of chemotherapy treatments and 30 days of radiation, he still has outward signs of the tumor and will have follow-up visits for the rest of his life. Due to the location of the tumor, they were not able to surgically remove it. Thankfully, because of chemo and radiation, the size of the tumor was reduced to 1/3 of the original size. The feeling slowly returned to the left side of his face, but he still has no feeling around his left eye socket. Since he has no feeling, the tear ducts do not know to moisten the eye, so we decided to sew 2/3 of his eye shut for protection. He does have vision out of the eye, but it definitely is not as strong as it used to be. He wears an eye patch because of it being sewn shut, but also because it is sensitive to light. He does wear that eye patch like a rock star and completely owns it.
We are so proud of the way he has handled everything that has been thrown at him over the last three and a half years. He is an amazing survivor and can teach us all a thing or two about courage, faith and strength. As his parents, we already knew this, but due to the tumor and his fearless fight, he has become a well-known in our community. People know who he is and he is an advocate for finding a cure for childhood cancer. You know the old saying, “It takes a village”. Well it has no truer meaning for a family going through cancer treatment. While the family member with cancer receives the actual treatment, it truly is the entire family that experiences it. We can truly say that there is no way that we, as a family, could endure the hardships, emotions, treatments, etc. without the support from our new family members through the hospital, support organizations and friends and neighbors in the community.
We ask our village to help us find a cure for childhood cancer. The money generated by the CURE’s Kids Conquer Cancer initiative will help fund specific research projects aimed at improving treatment protocols and survival for difficult to cure pediatric cancers.
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