It was the week of his 7th birthday and Gideon had been spiking a fever everyday around 4:30 and then the next day it was gone with no meds. He was diagnosed with strep and given antibiotics. By the end of the week, there was no change. He had a Ninja Warrior Birthday Party scheduled and we guiltily decided to still have the party since his only symptom was this weird fever. He had a great time, but was worn out.
The next morning we went to see the pediatrician who noticed some swollen lymph nodes & dark circles under his eyes. We also shared that he had not participated in PE one day because his legs hurt (Which is weird because the Fisher boys LOVE Phys Ed.) He sent us for blood work at the hospital so that we could get the results faster and didn’t say much about what he was looking for.
We were heading out of town that day to spend a long weekend with grandparents. That evening after a late start we were almost to the border of PA when the pediatrician called and told us that we should turn around and go to the Hershey Medical Center to get checked because it looked like Gideon possibly had Leukemia. So we made our phone calls to grandparents, explained what was happening to our kids, and turned around. Sometime around midnight on the day after Gideon’s 7th birthday we heard the words that stopped time, “Your son has leukemia.” The room just froze while we caught our breath….then it seems as though we dove head first into a word of spinal taps, bone marrow aspirations, chemotherapy, ports, neuropathy, hair loss, steroids, blood counts, and hospital stays.
Through each phase of treatment (which we were told would be about 3½ years) we were given possible outcomes. Most kids have no cancer cells at Day 8. If not clear by then, they typically have no cancer cells at day 29. Gideon was not clear either of those dates, in fact he took 5 months until he was clear. This is why he was placed in the High Risk category. Despite this we were fortunate to have only “minor” side effects through treatment. He had severe weight gain with the first round of steroids which completely changed his appearance and made his smile disappear. This is also when he developed his love of chips and salsa. He lost his hair twice during treatment, and missed about ½ of his second grade school year. His worst side effect was neuropathy which at its worst he was in a wheelchair because it hurt to just “be’ let alone walk. After the first year, treatment became easier and he became more active….playing more soccer, trying out basketball. We’ve actually watched him become stronger and more active in spurts over the last few years. On September 18 of this year, Gideon had his final chemo treatment at clinic and rang the bell. (He was probably more excited about the puppy we promised he could get after treatment. His name is Chemo.)
Even though our own faith in God gave us strength, we could not have survived this as well as we did without Four Diamonds and THON.
In those first few days we didn’t even think about expenses. We were learning about leukemia and it’s treatment (including reading a textbook on Childhood Leukemia, given to all parents). Someone that first night had told us about Four Diamonds and that it provided financial support to families, but we truly had no idea how much. A few days later we met our social worker, Miss Heather who told us that Four Diamonds covers expenses after our health insurance, gives vouchers towards food and gas during our trips back and forth to the hospital. Now we live 10 minutes from the hospital and I remember thinking that there are families who have to travel more and could use that support more. When I said that, Miss Heather just smiled and said, “Oh you’re going to need that yourself.” She was right, even with living 10 mins away, the back and forth took its toll.
Besides financial help, Four Diamonds provided emotional support as well. There was Child Life who helped Gideon to feel like he was a normal kid with crafts or BINGO games with Miss Jen. Music therapy helped him keep moving and staying positive. (He LOVED seeing them, even if it was just passing in the halls.) His favorite part was when they made a mixtape and dance moves for his last in-patient chemo treatment. (This part of treatment meant that Gideon was hospitalized one week and then home the next, for about 8 weeks.) We all had to learn the moves.
The social workers, nutritionists, and the Clinic staff were all there to cheer Gideon on and keep him moving forward as well. They all made the hospital NOT a scary place to be. He felt loved and supported.
In addition to financial and emotional support, Four Diamonds funds research that has already lead to more effective treatments and will eventually lead to cures.
When we started this journey we didn’t understand what Four Diamonds was. 3½ years later we hear stories of families in other parts of the world/country that have had to move to be near treatment, or to get a job with better insurance. NOW we know the blessings of Four Diamonds. We were able to focus on Gideon’s treatment, keeping our family connected and intact during the craziness of our new normal life.
Another dimension of Four Diamonds is the involvement and support from THON. Besides the obvious financial support that THON provides to Four Diamonds, there is also the fact that there are thousands of college students willing to give time and to work SO hard to make someone else’s kid feel special. And words cannot describe the feeling when it’s your own kid on the receiving end. Our family was matched with the most amazing org imaginable (not that we are biased), Club XC. This group has been simply amazing. They’ve organized picnics for their 4 families to get together with them. They’ve checked in on us through texts, phone calls, and skyping. Our first time meeting with the group was when Gideon was early in treatment and had to be in the hospital. A group came to visit and stayed to sing and talk and laugh with someone they have never met before. They brought him a Penn State soccer ball that he spent countless hours dribbling all around the hospital hallways while dragging his IV pole behind. For his first THON, Gideon’s ANC was super low, we were planning to sneak in to just “see” what THON looked like from the nosebleed section, and maybe meet with some of the team outside of BJC. Instead we heard from them that there was a space near them that wasn’t crowded at all, so we tried it armed with hand sanitizer and masks. I still can’t fathom that there really was this open little area where he could be near the action and feel part of it without REALLY being surrounded or in contact with everyone there. Then his second THON he couldn’t come because of Mumps (?) so what would a normal group of college students do? A group of them stood in line at BJC for most of the day to save seats for Club XC, then when others could take their places they drove 2+ hours to come to “Gid-Thon” (I think that’s what they called it.) We watched THON on our TV and they brought all kinds of goodies and just hung out with our family for a few hours, before driving back and standing in line to get back in to the BJC. It was so amazingly thoughtful and completely unexpected. We’ve met together at our home where they were forced to play soccer in January weather. We met at Chocolate World. There are so many ways that Club XC and Thon has supported our family from pre-THON activities to goofy videos and cards. All of it with the intention of providing support and a place for a “sick” kid to just be a kid.
Despite receiving a diagnosis we’d rather not have had, we have been blessed to be connected with Club XC, THON, and Four Diamonds. They are all part of the collateral beauty of our cancer diagnosis.
THON and Four Diamonds is making a difference in countless families’ lives (there are 300+ families on active treatment now). They are helping families endure what is probably the hardest thing they’ve ever encountered. They are working together for one purpose: to make a difference in someone else’s life. Besides the hope it provides to families like ours, that no one else will have to go through this, it’s also hope for the world we live in. Just imagine what these students (YOU) are capable of once they (YOU) are set loose in the world. It is simply amazing.
YOU all need to know that through 4 Diamonds/THON, you are making a difference. You are a part of something BIG, something life changing. You are supporting families and saving lives. And for that all we can say is THANK YOU AND GOD BLESS YOU.