30 Days For Wade continues and we are more than half way through with the campaign! This week's #JoinTheFightFriday features young Wesley Zooberg and his families fight with neuroblastoma treatment. This is a very special Join the Fight Friday because the Zooberg's are one of the Wade's Army sponsored families for the proceeds earned from the new KaPoW Wade's Army uniforms!
Wesley is approaching his 5th and last cycle of high dose chemo therapy on April 23rd. Wesley's mother, Amber has shared their full story below. We wish Wesley and the Zooberg's luck before this last treatment, and we will continue to support the family in their time of need.
Show your support for Wesley by purchasing your Wade's Army uniform found in the Wade's Army shop. Do not end your efforts there, be sure to like and share this story to recruit others into Wes's fight!
Walk With Wesley by Amber Zooberg
Wesley was diagnosed with stage 4 neuroblastoma, a type of cancer in children that arises from nerve tissue outside of the central nervous system. This usually occurs in the adrenal gland on top of the kidney, but it can be found anywhere along the spine. It is the most common solid tumor that affects children and accounts for about 15 percent of deaths due to childhood cancer. Despite how common this cancer is, I had never heard of it until Wesley was diagnosed and our world immediately changed.
On January 14th, Wesley woke up from his nap with a low-grade fever that continued for the next week, I thought he had a little virus since he had no other major symptoms. As Wesley became more irritable and we noticed a significant decrease in his appetite, we decided to take him to the Urgent Care and were told he was teething. Over the course of the next week, the fever continued and he had become increasingly cranky wanting to be carried everywhere. My husband, Peter, and I thought this was a reaction to Elsa, our newborn baby, but we decided to call the doctor anyway and we took him to our regular pediatrician on January 27th.
After 13 days, our baby was skinny, his abdomen distended and he belly was hard. Even with our son visibly changing, the diagnosis was that he was just teething. I called attention to his protruding belly button and change in behavior. The doctor felt his belly and said maybe he had an umbilical hernia but it was a small one and would go away. He finally agreed to a urine test for my peace of mind and found bilirubin in his urine. Thankfully, this prompted more tests. Later that evening, the doctor called and said Wesley's blood tests showed high levels of inflammation and that he needed to have a scan.
After much back and forth, trying to get him scheduled for a morning scan, they decided to admit him to the hospital that night. Peter took him to the Children's Hospital where they ended up doing a scan late at night. Without a radiologist on staff to read they scan, all they could tell us was that Wesley had a large mass on his liver. The next morning the official report revealed that he had a 15cm mass attached to his adrenal gland on his kidney that was most likely neuroblastoma.
Over the next few days Wesley had several scans which found another small mass near his trachea. He was in the PICU for a few days due to high blood pressure, a typical side effect of the tumor on the adrenal gland. On January 29th we had our first biopsy, bone marrow sample, and a central venous catheter placed. January 30th, we were given the diagnosis and told we needed to start chemo immediately. Wesley has Stage IV, high risk neuroblastoma, nmyc amplified tumor and bad histology.
So far, Wesley has completed 4 rounds of his 5 scheduled treatments and is responding well with minimal side effects. Scans confirm a great response to current treatment. The primary abdominal mass has shrunk by 83% and the other mass by his trachea has shrunk by 97%. We go back on April 23rd for Wesley’s 5th and last cycle of high dose chemo. At that point he will also have a hearing test to check for hearing loss from the chemo. We are thrilled with the results so far but worried about the treatment to come. In a way, chemo will be the easiest part of this journey. We still have the major resection surgery, transplants, radiation and antibody therapy.
The transplants will have to be performed at Duke Medical Center because our insurance considers a transplant at our local hospital out of network. We will have to manage accommodations/visitation in and around Durham, NC for approximately 6 weeks. Peter works for a small company so FMLA is not an option for us and I own my own business providing therapy to autistic children so if I don’t see clients, there is no income. If either takes an extended leave of absence, we will most likely lose our jobs. We will do whatever it takes to give Wesley the best care and figure out how one of us can be with him while he’s going through treatment so that he is not frightened. But the reality is we also have three other young children and managing and providing for our family for the next 12 months of treatment will be hard to manage financially.
Most days, I feel like things have normalized for us, but then I sit to write about it and realize how stressful this really is. It's the little things that add up. I don't have a problem dealing with the appointments, or the extra work/time this requires. It's the changes in Wesley that upset me most. It's like I've gotten him back but I haven't. The weeks before he was diagnosed he was fussy, lethargic, and just not my happy baby.
It's clear to me that he feels better now than he did. He's laughing and playing again, but his happy mood changes in seconds. He has become obsessed with controlling everything. I feel like my baby has been stolen from me and replaced by this monster called cancer. Easter was spent getting chemo, Peter and my anniversary will be spent apart while Wesley's inpatient for chemo cycle 5, and Wesley's second birthday will most likely be spent in the hospital for surgery/recovery. I hate all the moments he's missing out on and dread the long month or more stay at Duke this summer, but then I remind myself that this is so Wesley can live and have more moments later.
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Former collegiate lacrosse defensive midfielder, 4-year letter winner and 3-year team captain. Coached strength and conditioning collegiately with Georgetown University football, Men's and Women's lacrosse and Women's Crew, as well with the University of Texas at Austin's football program. Apprenticed under Raphael Ruiz of 1-FortyFour-1 studying proper implementation of science based, performance driven training systems. Head coached CrossFit Dupont's program for two years in Washington D.C. Received a Master's in Health Promotion Management from Marymount University in 2010, and has been a coach for Power Athlete since October, 2012.
Latest posts by Tex McQuilkin (see all)
- Action Days on Capitol Hill - May 12, 2017
- INTERNATIONAL CLINICAL TRIAL PROVIDES TARGETED THERAPY TOCHILDREN WITH NEUROBLASTOMA - March 31, 2017
- What your donations have accomplished - September 16, 2016