In mid-December 2011, Tyler (10 years old and in 5th grade) came down with a cold. On Saturday, December 17, he developed a fever, and on Monday, December 19, when the fever didn't break, I made an appointment with his pediatrician. He was diagnosed with a sinus infection and an ear infection, and was prescribed antibiotics. By Wednesday, he didn't seem to be getting any better and still had a fever, so I made another doctor's appointment. The pediatrician checked him out and felt that he may have contracted a virus (not treatable with the antibiotics) on top of the infections and we would just need to let it run its course.
Over Christmas, Tyler didn't seem to be getting any better. He was still running a fever and sleeping almost all day and night. This was really scary for us because Tyler was always a happy, energetic child. He loves playing games, making jokes, socializing, and just lighting up a room. So we were really upset on Christmas when he woke early to open his gifts and didn't have the energy or the want to play with anything. He slept all day. By the 28th of December, he was on the antibiotics for a full week and his fever was hitting 104°. I took him back to the pediatrician, and they tested him for strep and it was negative. They had also drawn blood to test for mono and other viruses, told us to alternate Tylenol and Motrin for the fever and they would call with the results.
On Thursday, December 29, we received a call that Tyler's blood tests were back and we had to go to Hershey for more tests.
When we got to Hershey, we were introduced to Dr. Freiberg and Dr. Huang (Dr. Mikey). They explained to us that Tyler was neutropenic (his white blood counts had dropped to a level that he could not fight infection or illness), and that there was a possibility he was fighting a virus but there was also a possibility that he may have leukemia. They continued to explain that they would give him an IV to draw blood for tests and that Tyler would need to stay in the hospital so that he could be put on IV antibiotics until his blood counts returned to a safe level.
So on December 29, we were admitted to Penn State Hershey Children's Hospital.
On December 30, Dr. Freiberg and Dr. Mikey came to us with Tyler's test results, and Tyler was diagnosed with Acute Lymphoblastic Leukemia (ALL).
A bone marrow test was done and it was confirmed the Tyler had Pre-B ALL. The most common and most treatable form of ALL, Thank GOD. They told us he would need to receive chemo treatments, spinal taps, and other medications for the next 3 years with the first few months being the most intense. The doctors assured us that today's treatments have improved immensely and that Tyler had an 80-90% chance of a complete recovery.
Shortly after Tyler's diagnosis, we were introduced to Greg Baiocchi (our social worker), and he gave us information on an organization called the Four Diamonds Fund. He told us about The Millard Family and how they had lost their son to cancer. They had created the fund in his honor to support the families of children with life threatening illnesses so that their treatment would not become a financial burden and the families may focus on their child and his/her health.
During Tyler's stay at The Children's Hospital we were introduced to so many wonderful people. There were "child life specialists" that would check in on Tyler to see if there was anything they could get him to keep him comfortable and occupied. A child life specialist would also attend his procedures with him to occupy him with games, books, or music to keep his mind off of what was happening. Anything to keep him comfortable.
There was a day during his first stay, and we were in his room and there was a knock at the door. Tina, the "music therapist," came in. She asked if Tyler enjoyed music and if he would like to make some music with her. Within minutes the atmosphere completely changed, we were singing, making music, and actually laughing. She completely uplifted our spirits (at a time when we really needed it). It was something I'll never forget.
I learned later that all of this was possible because of the Four Diamonds.
On January 8 we were discharged with Tyler looking and feeling better than he had in weeks but with a very long road ahead of us, we had a lot of support from family, friends, and the Four Diamonds.
On Febuary 2 after a scheduled bone marrow test, one month after the start of treatment, Tyler was in remission! Although in remission they cannot be sure that there are not any cancer cells hiding so treatment continues.
A year and a half later, several hospital stays (scheduled and unscheduled), countless chemo treatments and spinal taps, a few blood transfusions, physical and occupational therapy, an ambulance ride, several ER visits, and many medications since, we still have never seen a medical bill. The Four Diamonds covers all his medical costs not covered by his insurance. I don't know how I would have done it.
In February 2013, we attended our first THON. It was absolutely an AMAZING experience. Words cannot describe our feelings, seeing all of the students gathered together dedicating 46 hours to the fight against childhood cancer, to raise money to help families like ours.
THON and The Four Diamonds have touched our lives and we can never thank you enough! You have helped fund the research that increased the survival rate. You have helped fund the child life specialists, music therapists, and social workers that have brought us comfort and made difficult times easier to handle. You helped fund the new hospital to provide better care for the children and bring more comfort to the families during their stay. You have also given us the ability to focus on giving Tyler the best care without worrying how we were ever going to pay for it.
We are very thankful for each and every one of you, and we are so very excited to meet the new SHC family members and celebrate THON again with you!
Our favorite memories of THON include:
The start of THON, when the lights come on and everyone stands. The color, the atmosphere, the emotion, the crowd. Just AMAZING!
The last four hours and the reveal. An emotional time. And to see the reward of the students time and effort. What you do is incredible!
Tyler is an amazing kid. He is thoughtful and caring, he loves joking around and making people laugh, he plays basketball and loves to ride his scooter. Our family enjoys the outdoors and camping and since Tyler's diagnosis and treatment, we have made it a family priority to support the Four Diamonds in any way we can, not only to give back but to help ensure that future families can receive the same support that we did, and to help fund the research in hopes that the cure will be found.