Leo is so happy, always! He loves toy cars and any ball. He adores his three older sisters. And is his mommy’s boy for sure!
When Leo was a month old and his stomach ballooned out and was very hard. We took him to the pediatrician who immediately sent us to the hospital. He was diagnosed with Neuroblastoma on September 8, 2017. Leo has had two rounds of chemo.
The stress of everything caused a lot of tension between us as parents and we split up for a while. We have moved twice. My daughter was homeschooled her 4th grade year. I (mom) have separation anxiety from my kids and I’m constantly worried that something is out to get them. Dad lost his job because of the missed days and the stress he was trying to deal with. We have now settled and are rebuilding our family, while trying to continue the fight against childhood cancer.
On July 12, 2017 our lives changed forever. Our sweet smart beautiful 19 month old daughter, Leila was rushed to the emergency room after a visit at an after hours pediatrician, for what we were told a couple days earlier was constipation. We were admitted that night and were told she has cancer, stage 4 Neuroblastoma. This terrible disease already had spread to her liver but thankfully had not spread to her bone marrow or bones.
After 23 days and all kinds of testing including one round of chemo, we were able to finally go home. Being at home is always short lived though. We now have a second home, our little room on the oncology floor of Arnold Palmer Hospital and for the past year we have shared our time between our two homes.
Leila has had 5 rounds of chemo, a tumor resection, 2 stem cell transplants, 12 rounds of radiation and just completed 5 rounds of inpatient immunotherapy. She has one month of Accutane. Once she completes that she will still do 2 years of DFMO which is a clinical trial for relapse prevention.
Bonifacio Ethan an easy going kid and very laid back. He enjoys fast & iconic cars, 80’s music, playing guitar, watching movies, and drawing cars. He’s a swimmer & in track. He’s a senior and plans on going to CCS or Lawrence Tech for Transportation Design.
Ethan was diagnosed with Neuroblastoma in 2005 two months shy of his 4th birthday. One night, while he was sleeping, he turned over onto his belly and cried in his sleep for about 15-30 seconds then he would stop. This went on multiple times throughout the night. I rubbed his belly to help with the pain and I felt a hard windy lump. As soon as the doctor’s office opened I called to make an appointment. The nurse said that he’s probably just constipated but I insisted on bringing him in.
I took him to the appointment and when the doctor was assessing him I could tell that something was not right. She brought in another physician for a second opinion. They also felt the lump but unsure what it was. They had us go to the ER immediately and called ahead for the ER physician to expect us.
From there, after the CT scan, multiple doctors came in and told us Ethan had cancer and needed to be admitted and have surgery. The following day he had surgery where they removed a grapefruit sized tumor that grew on top of his adrenal gland located on top of his kidney. They were able to save his kidney but the tumor spread to his lymph nodes making its way to his lung. Miraculously, after several hours they were able to remove the whole tumor and affected lymph nodes.
This type of tumor is aggressive but since they were able to remove it completely his prognosis improved and didn’t require chemo and radiation at that time. His treatment was watching and waiting with frequent tests for 5 years awaiting for the tumor cells to proliferate. Fortunately, to this day he is still in remission.
Kelly has a full spirt and always tries to do everything with a smile on her face. She has gotten used to the hospital lifestyle, but also still knows how to be a silly 1 year old learning to walk. She loves her Bubba, which is our dog. She loves loves to be outside with animals. Playing with toys and going for walks. She is talking more and more everyday. She has the best eyes in the world!
Kelly was diagnosed this June 2018 after we found a tumor on her chest. She has stage 4 advanced Neuroblastoma. This is a very aggressive cancer with a very aggressive treatment plan. We still have a long road ahead of us. Kelly just finished round 4 and is staying tough for a 13 month old baby girl.
Kelly has had line placements twice, she’s had a stem cell collection procedure. She has had 4 rounds of chemo with 4 more to go, the last two being very hard with a long stay and surgery to come soon. Radiation is after that for a month and more therapy for 5 months with week stays once a month.
This has been hard on us but we are getting through it. I quit my job as a teacher to take care of Kelly full time. Dad is a big help when he is not working. Our dog is staying with grandparents and comes to see us every so often. We moved to Nashville away from most of our family and friends 4 years ago. It has been difficult trying to get through most weeks on our own. Family comes in town as much as the possibly can.
Kelly has already gone through more in one year of life then most people go through in a lifetime. She is the bravest, strongest little girl. She is momma and daddy’s Hero! I wish I could change all this for her but I can’t so I want to help her get through it the best way I can!
