Rhys was just like any other child. When he would run, he sounded like he was struggling with his breath which made me think he had asthma. I contacted his doctor on a Monday about it and she prescribed antihistamines to see if this was the case. Within a day or two, we noticed vein-like bruising on his chest that turned into a two-cent size lump. We took him to the doctor and they said it was probably due to coughing and to keep eye on him. Two more days passed, and watching our 1 1/2-year-old with no energy, laid out on the sofa, and with no interest in playing made us so concerned.
That Saturday, we contacted or local south doctor but when we mentioned the word “cough”, they didn’t want to see him due to covid and prescribed an antibiotic. By Monday, he had weakened even more and was starting to walk funny with one leg twisted in and with a limp. We took him to the doctor again and was sent straight to A&E. Where he was isolated due to covid and kept overnight. I wasn’t able to stay due to covid restrictions and the one parent rule. and I was also considered high risk since I was 7 months pregnant.
On that Tuesday morning, he was rushed to ICU Crumlin Children’s Hospital where everything was done so fast. While there, Rhys weakened more and started to develop a rash on his back, face, and chest. He also lost all movement in his body from the neck down and was extremely swollen from fluids. This was when we were told that it was a form of cancer and more tests were done to figure out what kind. By that evening we were sat down and shown Rhys’ scans while the oncologist explained that our little man had 4 tumors, 3 on his spin, and one large mass constricting his windpipe. He started chemo started straight away.
Rhys’ diagnosis has changed our family life. I was always the person that said it’s just a cough and he’ll be fine it’s just a runny nose but now I second guess everything. I think as a person it’s changed me most to stop thinking “it will never happen to me.”
My son Nicholas was diagnosed in 2013 with Non-Hodgkins Lymphoma. He didn’t have any odd symptoms but complained of his stomach hurting. He did also have unexplained fevers. They said it was viral or a stomachache bug… who would have ever thought it would be cancer.
Nicholas had a total of 8-months of chemotherapy and major surgery to remove the tumor. He also endured many spinal taps and lumbar puncture. It was just so much for a small child to go through.
Cancer changed our lives in so many ways physically, emotionally, mentally, and just know never to take life for granted every moment is a memory.
He is in remission for 6 years. We want to inspire others by showing our survivor!
Chloe is smart, sassy, and very intuitive. She loves unicorns and sponge bob square pants. She loves her french bulldog, Olaf. She LOVES to swim and go to the beach.
One spring day, I was changing Chloe out of a bathing suit and saw a lump in her groin. It was hard and didn’t move easily. As a registered nurse, I knew it wasn’t a hernia, however that is what it appeared to be at first glance. She got an ultrasound which showed an enlarged lymph node and we were told to watch it for any changes or getting larger. It continued to get larger so we were referred to a surgeon who subsequently removed all of the mass and the pathology came back as B cell Lymphoblastic Lymphoma.
She had a port placement, lumbar punctures with intrathecal chemo infusion, and bone marrow biopsies. She will be receiving weekly chemo and lab draws.
Chloe also was born with a short leg, so we have had our challenges with that. As of now, she wears a lift in her shoe. She was supposed to undergo major surgery to lengthen first her femur and then 1 year later reconstruct her knee and tibia. But now that she has cancer we have to put that surgery on hold for 3 years. She loves to dance but we couldn’t enroll her in dance classes. She has never once felt sorry for herself or asked “why me?” She’s a very strong girl.
In the spring of 2014, Taliyah stopped being able to breathe through the nose, had headaches, and sleep apnea. She was diagnosed with Rhabdomyosarcoma on April 8, 2014. She completed 42 rounds of chemo, 6 weeks of radiation, over 50 blood/platelet transfusions, and five surgeries before going into remission. In March of this year, she hit the 5-year cancer-free mark!
Cancer changed every aspect of our life. From the jobs (I had to quit), my oldest child dropping out of college to help, my second oldest was a senior and I missed most of the special moments that year, I missed my youngest first day of kindergarten and first football game – to name a few. Both I and my husband have PTSD to this day. My other children are still dealing with anxiety. Taliyah goes to counseling for her own anxieties and fear of cancer returning.
Taliyah has stayed involved in the childhood cancer community. She has organized toy drives, lemonade stands, and gift card donations. She volunteers with Pink Heals Solano which visits cancer patients of all ages.
In December 2018, Brody was diagnosed with a very rare peripheral t cell lymphoma. The symptoms started on our Thanksgiving trip to Destin. While in the car, he threw up. He only threw up once and had no other symptoms so we thought that he just was motion sickness. A week later on our vacation to Mexico Brody got sick twice off and on. Once back to the states, he tested positive for the flu. Brody continued to be tired. He was coming home from school and going straight to bed.
Then on December 14th, after becoming sick at my company Christmas party, we immediately brought Brody to the ER. Thankfully we saw the doctor we did that night as she decided to conduct multiple blood tests that showed he had extremely high calcium levels. She let us know she thought there was a possibility that it was cancer and they were transferring us immediately to Atlanta’s Children’s Hospital where it was confirmed he had cancer.
We transferred his care to Nashville where we learned the underlying reason for the rare form of cancer appearing is due to a rare genetic disorder called ataxia-telangiectasia (AT). Basically it is a combination of every horrible disease you can think of cerebral palsy, muscular dystrophy, and immune disorder. It is a disease that will continuously progress to the point where later in life he will need a wheelchair and could possibly not live to adulthood.
Brody completed 6 rounds of chop e chemo, which he tolerated very well. With clear scans at the end of May, Brody underwent his first bone marrow transplant. The hope was that Brody would gain someone else’s immune system so the cancer will not return and also fix the immune disorder caused by AT. The results showed the cells did not graft as they should.
In October 2019 the cancer returned shortly after returning from his make a wish trip. He then went through 4 more rounds of chemo before his second bone marrow transplant in March of 2020. He actually received his cells the day COVID was announced as a global pandemic. The cells did graft however in June the aggressive cancer returned, even with a new immune system.
At this point, there is no cure for his cancer and we decided to take Brody home and enjoy every moment we have left.
Jake is brilliant! He’s in mostly honors classes and works so hard academically. He’s a sports fanatic. He played baseball, football and basketball before his diagnosis and he hopes to return to it soon, in the meantime he’s happy to cheer on his favorite team, the New England Patriots. Recently Matthew Slater sent Jake a video message and it was the highlight of Jake’s year! He also plays the guitar beautifully and is starting to write his own music. He’s passionate about everything and just really enjoys life.
Jake had a lump on his neck with no other symptoms. His lump was treated as an infection but it wasn’t going away with antibiotics. I insisted on a biopsy. We found out 2 days after his surgery that he had lymphoma.
He just completed a 9-week chemo regimen. His doctor is at Mass General in Boston, a little over 2 hours from our house. My husband is also in treatment for stage 4 colon cancer. It has been very difficult going to all appointments and they sometimes fall on the same day so I am not always able to go with my husband. It’s very difficult.
With two family members going through chemo for the past 3 months it is very tough. We have two other children that constantly worry about their dad and big brother.
I’m so proud of Jake. He was my go-to-guy helping me with his younger sister, brother, and his dad. He even can unhook my husband’s chemo machine, he learned at 11 and is so careful and does a great job. I thought when he got sick that he might fall apart. I thought because he knew what he would face it would be so hard on him from the beginning. Jake told me he wasn’t afraid. And even when his hair fell out and he gained a lot of weight from the steroids he never complained. He still tells me hes not afraid. Hes unbelievably strong.
