One day out of the blue, Isabella complained about a stomach ache. I took her to the pediatrician and she had some tests. They confirmed she had a huge mass in her left kidney. The same day she was admitted to Joe DiMaggio Children’s Hospital. The next day, she had a lot of tests in preparation for surgery to remove her left kidney. A week after she started with radiation and chemotherapy. Before that she was not complaining of anything and didn’t show any symptom that make us worry about her health.
We received confirmation a few days after surgery it was Wilms Tumor stage IV. They started the protocol recommended for that and the first two chemotherapy rounds were very tough. She started feeling week and not normal at all. Then the major problem was her immune system, which was too low during all the treatment. She couldn’t have play dates, visit public places, attend kindergarten, etc. We managed by staying home or at the hospital and trying to do the best everyday.
This changed our lives since the moment we heard the words, “Your daughter has cancer.” The sentence nobody wants to hear. Nothing would be the same and now we needed to learn to live with that.
We are so grateful everyday. Isabella is now happy and has energy to do activities a healthy kid would do. She went back to school and attended first grade. She is also doing extra school activities she couldn’t participate in more than a year ago. She is currently in remission but needs to have a lot of follow up appointments with several specialists and tests every three months.
Emma is super sassy, a crazy goof ball, and absolutely wonderful. Tickles make her laugh, funny faces. She loves Mickey and all things frozen, Moana or anything Disney really. She loves music especially nursery rhymes and Disney songs. Bubbles is one of her favorite things and puppies! She’s a huge animal fan.
Emma was diagnosed on February of 2018 with Wills Tumor. Emma was completely normal with no symptoms of any kind. The only thing that was noticeable was that her tummy was more pudgy and stuck out. Other than that she didn’t have fevers nor any change in appetite or character.
She went through surgery just two days after we found out that she had a tumor in her right kidney. Then she under went 19 weeks of chemotherapy. Just in general it was hard to see our sweet toddler go through so much pain and exhaustion.
Cancer has changed us. We appreciate more, love more and laugh more. We value time together even more. We take time to do things, living in the now and being hopeful for the future.
Emma is the strongest person I’ve ever met, through everything she’s maintained a smile on her face and a positive attitude. People that meet her can’t even tell she was sick of exhausted because of treatment. She is full of life and energy!
Ezra is such a goofball. He’s shy with people he doesn’t know well, but he is always making us laugh. He’s very smart, and he picks things up really quickly. He loves superheroes and Lightning McQueen. He loves playing Avengers with his brothers. His brothers love to play lego and duplo with him, and they love building together. Ezra loves reading, painting, and playing tag. He is that age when he wants to be independent, and he gets mad if he can’t do something by himself (whether it’s because we won’t let him or because he can’t physically do it yet).
Ezra started puking one Friday night in July, which wasn’t that unusual because kids pick up things like tummy bugs occasionally. But for whatever reason, mother’s intuition maybe, I had already decided to take him to urgent care in the morning. I can’t really explain why, but I just felt like we had to go. Saturday morning, Ezra was actually feeling a bit better, and he was playing with his big sister and wrestling on the bed. He fell backward and rolled a weird direction, and it looked like he had a lump on his tummy. I laid him down on the bed and pressed on his belly, and one side definitely felt firmer than the other. I called his pediatrician, and the nurse I spoke to reassured me he was most likely just constipated and that I was feeling poop in his gut. She told me I could bring him in if it would give me peace of mind. I had already decided I wanted him seen asap.
When we went in, the doctor immediately sent us to the local children’s hospital emergency room where they did ultrasounds and x-rays. They found a large mass on his kidney. Six days later, his kidney and tumor were removed. A few days later, he had his first of many chemotherapy treatments, and we were able to go home after twelve long days in the hospital.
That summer he definitely hadn’t been sleeping or eating well at all. Looking back, we know now what we were seeing were symptoms of the large tumor in his tummy.
He had a complete nephrectomy (kidney removal), and he had 19 rounds of chemo. He has scans every three months, and blood-work and other labs every 6 months. The stress and trauma his diagnosis has caused our family has been hard on us all. The financial strain, the stress of our marriage and being able to spend time focusing on our other kids, and the constant worry of relapse have all been struggles for us as well.
Just a few days into summer vacation in 2017, Hana woke in the middle of the night, with right abdominal pain. We assumed her appendix, but after an ultrasound, she was diagnosed with Wilms tumor- CANCER.
She started chemotherapy immediately. This continued weekly for 12 weeks. She did not enjoy this, but her strength and bravery prevailed. After those 12 weeks, she had surgery and more chemotherapy. In November 2017, she completed treatment.
Hana’s diagnosis has helped us to live each day to the fullest. It has made our family closer. As it approaches one year since Hana’s diagnosis, it is hard to forget everything she’s been through this past year. We look forward to a fun summer this year.
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.
My daughter is a PRINCESS and a force of nature. She is fearless!
Mollie was diagnosed with cancer after taking her to the ER for what we thought was appendicitis. She had fever, vomiting, and abdominal pain. An initial cat scan revealed an 18cm mass on her right kidney. It was bleeding. It probably ruptured as a result of either gymnastics or playing on her slip and slide.
We were transported by ambulance to Children’s Hospital of Alabama. There we were met by members of oncology and surgery. She was given a blood transfusion and two days later she had a port surgically placed to start chemo. She was diagnosed with Sarge 4 Wilm’s Tumor in her right kidney. She endured 24 weeks of chemo, 6 radiation treatments, and lost her right kidney.
Mollie has tremendous medical anxiety that has gotten worse. The worst thing for her I think was her hair falling out. She had beautiful long light blond hair. A beautiful princess. It took a lit for her to get her confidence back.
As a family, everything has changed. I am much more protective and Mollie is much slower to warm up to people. My husband and I have decided to keep our circle small.
