Leo is the sweetest little guy! He loves his brother Charlie, playing outside, being together as a family, eating fruit, and he LOVES hockey and baseball. I never thought a child could legitimately love sports until my kids came along, He is very stubborn and willful and also sensitive. He’s a homebody and gets overstimulated easily. He reallllllly loves me, his mom.
In August of last year, Leo started behaving differently. He was extremely clingy and crabby and wasn’t sleeping at all. He would wake up 8-10 times a night. In mid-August, he had a stomach virus. The morning after, he woke up and I noticed that his diaper looked dark. Later that afternoon afternoon I noticed a clot of blood in his diaper. Then I remembered a few times that day where he sort of bent over grabbing his stomach. I called our pediatrician and the nurse didn’t sound overly concerned. She sent us to urgent care and assured me it was most likely a UTI. After our visit to urgent care when all of the tests were negative, we followed up with our pediatrician who was confused by his symptoms. He thoroughly examined him and recommended that we see a pediatric urologist. I called to set up the appointment which we had to wait three weeks for. In the meantime, we went on vacation where Leo’s symptoms continued. When we got back, it was Labor Day weekend and we had friends in town staying at our house. He woke up on Saturday morning and was acting horribly wrong. He was laying limply on the couch, and I was looking him over when I felt a large, hard mass on the left side of his abdomen. My heart dropped and I called our pediatrician immediately. He advised us to head to Children’s Hospital of Wisconsin. When we arrived at the ER, I told the nurse that my son had blood in his urine for the past several weeks and that we had noticed a large mass on his abdomen. We were immediately shown to a room, passing a long line of holiday-weekend families. Within an hour he had an ultrasound, and before we knew it we were speaking with an oncologist about the mass they found on our son’s kidney that was most likely a Wilms Tumor. We were admitted that day and two days later Leo underwent a radical nephrectomy to remove the tumor, his entire left kidney, the surrounding lymph nodes and blood vessels which tested positive for cancer, and his adrenal gland which was also overrun with cancer. Unfortunately, the tumor (which was taking up 1/3 of his abdominal cavity) ruptured during the surgery, spilling cancer cells into his abdominal cavity. Later that week we received his official diagnosis; Stage III favorable blastemal-type Wilms Tumor.
Leo has had: 2 surgeries (Nephrectomy, port placement and port removal scheduled for 4/2), 14 inpatient hospital stays, 32 outpatient days in the hospital, 24 chemo infusions, 6 days of radiation,10 sedations, 6 morphine infusions, 25 rounds of IV antibiotics/antivirals
42 IV pokes/port accesses, 4 ER trips, 10 NG tube placements, 2 catheter placements, 2 CT scans, 2 MRIs, 2 x-rays, 2 ultrasounds, 2 EKGs, and 2 echocardiograms.
It’s difficult to describe the struggles we’ve faced as a family during treatment. So much of the last 6 months has been a blur. Our older son Charlie has struggled with sadness and confusion. He didn’t understand why life changed so much dramatically overnight. Now that we are rounding out our treatments, we’ve noticed some insecurities that he’s developed. Thankfully, he and Leo have an awesome relationship, but I know he doesn’t understand why Leo has gotten so much attention over the last 6 months. I hate that this has become his new normal and I see the need for him to heal from this difficult time. He has taken the back seat to Leo many times out of pure necessity.
I guess the hardest part about this for my husband and I has been the reality of what a cancer diagnosis means. Before cancer, I used to hear about families facing tragedies and it was just so unimaginable to me. Now, the previously unimaginable is something I think about daily. For a long time we didn’t know how Leo would do with treatment, and it was so painful to think or even talk about the future at all. I’d casually mention something that would be fun to do in the summer, and then I’d get a pit in my stomach because reality would hit that those days as a family aren’t promised to us. It has been devastating to watch families with our same diagnosis face relapse or worse, lose their children. The other aspect that has been difficult is the knowledge of the risks of the treatments he has received. As much as I know that the chemo and radiation are what give him the best shot at beating this wretched disease, it has been extremely emotionally taxing on my husband and I to fill him with poison that has caused so many terrible side effects. One of the hardest parts was when he lost his hair, eyelashes and eyebrows. That made it all seem so scary and real.
All of that said, this experience has clarified our priorities more than ever before. We have prioritized time together as a family and have strengthened our marriage. We’ve become a better team. We’ve learned to say “no” to outside commitments that interfere with what’s best for our marriage and children. Perhaps most importantly, we’ve really learned to live day-by-day. A childhood cancer diagnosis was always my worst nightmare (literally!!), and then it happened and my nightmare became a reality. What I learned through that experience is that God always gives you sufficient grace for that day’s troubles. In the mist of total anguish and devastation, there was also a sense of peace that truly surpassed all understanding. We were faced with the terrifying possibility of losing a child, and I really learned to NOT worry about the future. I know that God will give us the grace to get through whatever the future holds for us. I definitely still have times of fear and even despair. I’m human! But at the end of the day I feel like this experience has truly renewed my faith.
Hope session by Angie Moon | Instagram