October 10th, 2009. This was a day that changed our lives forever and one that our family will never forget. That was the day our sweet 5 year old and otherwise healthy son was diagnosed with Stage IV Wilms’ Tumor. Our days of t-ball games, kindergarten field trips, and normal family activities were replaced by long hospital stays, watching our son undergo multiple surgeries, chemotherapy and radiation treatments, and just overwhelming feelings of fear and anxiety.
The night Alex was diagnosed he was taken via ambulance to the local Children’s Hospital which became our home away from home. Initially, Alex went through 6 months of chemotherapy treatment, 15 days of radiation, multiple surgeries, and countless visits to the clinic and emergency room. Having to watch your child go through such an invasive treatment is unbearably difficult. My husband and I tried to control whatever we could but as parents you feel so helpless and alone.
At 5, he battled the disease quietly being the shy guy that he is; he didn’t really like to talk about it much. He hated going to the clinic, he hated having to skip meals for surgeries or scans or radiation, he hated losing his hair, he hated every single thing about the disease. He never really got used to everything like the nurses and doctors said he would, he had a lot of anxiety with every visit big or small, but he got through it and we got through it with him. In April of 2010, we learned that Alex was considered to be in remission which was one of the most joyous and amazing feelings we have ever experienced. We slowly came out of shock and other than the routine scans and clinic appointments, we felt as though we were starting to get our lives back together. While things never really were the same, we slowly adjusted to life with our new normal.
In February 2012, however, life came to a screeching halt yet again as we learned Alex had relapsed just shy of his 2 year remission milestone. We were devastated perhaps even more this time around as we knew what would be in store for Alex and our family. We looked for the positive and found some comfort in that we knew what to expect and eventually became even more determined to beat his cancer a second time. But like all things with cancer treatment, there are constant curveballs and unexpected punches to the gut that are thrown at you. During the surgery to remove the newly grown tumor along Alex’s IVC and aorta, Alex had unexpected blood loss; This loss of blood to his lower extremities would ultimately leave our son partially paralyzed from the waist down. So while we thought we were prepared to battle again, we quickly learned we had no idea what was in store for us. Not only did Alex have to endure intense chemotherapy and additional radiation treatments, but he had to do this while also going through inpatient rehabilitation for his paralysis. He spent 3 months in the rehab hospital and would literally alternate between 1 hospital for rehab and then transported next door to the Children’s hospital for chemo. Alex went in for surgery on that February morning in 2012, thinking we would be home in a few days…little did we all know that a few days would turn into months and instead of walking out as he walked in, looking forward to running and playing when he was feeling well; that he would instead be wheeling out in a wheelchair and our world as we knew it would yet again be turned upside down. Alex’s cancer would never go into remission again and he would continue to relapse with each treatment we tried. Over the almost 7 years he fought, Alex endured an unimaginable amount of treatments: 18+ surgeries/procedures; countless rounds of chemotherapy, immunotherapies and clinical trials; paralysis from the waist down as well as a second and separate paralysis in his right hand; countless radiation and cryo-ablation treatments; and countless scans, pokes, and hospital admissions. We spent many birthdays and holidays on the oncology unit. Throughout it all Alex remained sweet, somewhat shy, yet very determined.
Alex lived his life to the fullest and didn’t let much slow him down. He had great compassion for others, he was a loving son and protective older brother. He was spiritual and had amazing faith and trust in God. Alex was incredibly humble and while he didn’t always enjoy the spotlight, he LOVED Alex’s Army events and was proud of what our Army does to fight this dreadful disease. You would always see him at our Walk N Roll 5K smiling and pushing away in his wheelchair or out on the Golf Course for our Driving for a Cure event hitting balls and talking to the golfers. He loved meeting the bands in our Battle of the Bands event and delivering care packages – though he only got to do it the one time – to other patients at the hospital. He had a heart of GOLD and was an inspiration to all who knew him.
Over the years, our family had frequent discussions of faith, of hope – when all else seemed hopeless, of finding strength in God when we are too weak, of death, of heaven, of cancer, of fairness, of being different, of struggles in life, you name it – we talked about it. There are no words to describe how it feels as a parent to have to watch your child endure so much pain and heartache in their little innocent lives. The natural tendency as a parent is to want to fix everything, to shield and protect them from pain, danger, and heartache. Through all of this, one of the things we have learned time and time again is that we are not in control. The only comfort and joy we have been able to find, and finding this has been amazing, but it is in knowing that there IS a greater purpose for us all. While this life is nothing that I would have imagined or picked for us; we have seen so much goodness come out of this pain, we have seen firsthand how God works in His own perfect timing and ours eyes have been opened to the beautiful promises He has given to us. While we may not understand why our family has had to endure this trial, we find comfort in knowing there is a reason and that reason is for good and for a greater purpose. Our sweet Alex passed away at the age of 12 years old on June 5th, 2016 with his Mom & Dad holding his hands and by his side. Alex is the inspiration behind Alex’s Army and we are committed to helping find a cure for all Children battling Childhood Cancers.
With Faith, Hope, and Love Always,
Jenni & Derek Green