Alice was diagnosed in October of 2016 with Medulloblastoma. She was having extreme headaches and an MRI revealed a brain tumor.
She has had a brain tumor resection, radiation, chemotherapy, and years of follow-up OT, PT, and specialist appointments. Her surgery caused some brain damage and she has some speech and balance issues.
We are celebrating her being a senior in high school and making it through these last 5 years. In just a year and a half, she will be considered a long-term survivor!
Ely was diagnosed with Medulloblastoma in September of 2014. Before his diagnosis, he was experiencing neck pain waking him from sleep, vomiting, and hallucinations.
He has had full resection of the tumor, a shunt placement, completed full brain and spine radiation for 6 weeks, and then high-dose chemotherapy. He cannot play contact sports due to the shunt placed in his brain as a result of damage from the tumor.
A cancer diagnosis, as many families know, changes the course of your life forever. He will have many long-term side effects. We are slowly adjusting to a “normal” life now that he isn’t in active treatment.
Ely is a superhero enduring things no child should have to go through. We are so thankful for the many organizations and people that helped us along the way.
Our little boy, Juan Pablo, the youngest of four had just turned two. His light ashy brown hair was sticking straight up, he was beginning to say a couple of words and loved to carry his sippy cup everywhere he went. During his wellness pediatric check-up in October of 2018, I asked his pediatrician to check Juan Pablo’s iron levels due to his lack of eating veggies. After a tiny finger poke, the iron levels were low, and she decided it was best to have a complete blood count. The next day, I received a concerned call from the doctor because Juan Pablo’s platelet levels were very low. Immediately the following morning we were seeing a hematologist at Children’s Hospital. After thorough blood work, it was thought that he could have Immune Thrombocytopenia (ITP), a disorder that can lead to easy or excessive bruising and bleeding. This condition in children sometimes resolves itself within a few months. Since Juan Pablo was not showing any symptoms other than some bruising, he was being seen monthly to continue to be monitored. On Saturday, February 16, 2019, Juan
Pablo woke up with a slight fever. As the day went on his fever rose, and he began to look very weak. He was rushed to the Children’s ER. Juan Pablo’s temperature was 104.1. He had been diagnosed with strep. Because he looked so weak, they gave him two steroid shots and sent us home with antibiotics.
Juan Pablo did get a little better with the amoxicillin but as soon as the medicine was over, he started to get sick again. Week after week he started to eat less. One day he woke up with a stomach bug, vomiting, and unable to hold anything down. Days later, he began to complain about walking. He would constantly wake up in the middle of the night complaining about his hips and wanting to be held almost all day long.
Less than a month later, he was back at Urgent Care with a cause for his symptoms of a virus. Despite caring for him over the long weekend, giving him Tylenol every 5-6 hours, pushing down Pedialyte and Pediasure with a syringe into his mouth, the days were rough. He was uncomfortable, had no appetite, and was clearly in pain.
Monday came, and we were back at the pediatrician’s office. Her straight face said it all. She knew it was serious and suggested that Juan Pablo have the bone marrow biopsy. The biopsy was performed on Tuesday. On Wednesday the doctor confirmed that our beloved son Juan Pablo (our Pablito) of only two years old had cancer. He was diagnosed with Acute Myeloid Leukemia (AML) on March 13, 2019. (AML is acute myeloid leukemia (AML), a rare form of cancer that affects the bone marrow and blood.) Plans were made to have Juan Pablo admitted to the hospital immediately. From not knowing an ounce about leukemia or cancer, we put on our parent-student hats to be the best advocates we could possibly be for our son. On we went, with a needle in our baby’s hand, step-by-step moving from the clinic side to the inpatient hospital side.
Juan Pablo’s AML treatment in the best-case scenario would consist of five rounds of chemotherapy, two inductions and three intensifications, and last 6-8 months. The following day he had his central venous line placed, his first lumbar puncture, and first chemo. Each round would wipe his bad and good blood cells and consisted of long hospital stays — 4-5 weeks. He received 14 blood and 20 platelet transfusions, four lumbar punctures, echocardiograms, many tests, countless blood draws, oral medication fights, CT scans, MRI scans, sustained not needing a nutrition g-tube, eye and nasal exams, weekly dressing changes, endured appendicitis, mucositis, TPN nutrition, eye sensitivity for four days of darkness and a total of 153 days and nights in the hospital. Juan Pablo did amazingly well with the treatment. His team was amazed that after the very first round of chemo, induction one, he was in remission. His test results showed 0.000 cancer cells! He overcame and fought cancer hard but still had to go through the full five rounds of chemo. He fought like a champion kid, like a kid with God on his side, like a kid who could do anything. He truly is our hero. Despite the hospital pole, he still ran the hallways, played in the playroom, converted his hospital room to our home full of toys, snacks, and cartoons running on TV. He captivated the nurses’ hearts with his flirty dimples and loud play. Like Dr. Halyko would say, “he’s rocking it!”. On November 12, 2019, we walked out of the H.O.T. unit with large smiles on our faces.
After nine long months, in December of 2019, Juan Pablo finally had his central venous lines removed. “Yeah, no more tubbies!” we would celebrate. On December 31, 2019, we rang the bell for the end of treatment celebration. A perfect day to ring in the new year and the bell. Of course, it was difficult, but he sure made it easy on us. He’s our amazing son who changed us, who made us appreciate all the little things, to be better, to be aware of childhood cancer, to appreciate the innocence and love of children through sickness or health, to give more of us, and to live every moment with kindness and love. In his little two- and three-year-old self, he has opened the hearts of many to prayer and to God. Today. Juan Pablo is a healthy and vibrant four-year-old. He’s a blessing who inspires us every day.
Because of him, our devastation transformed into inspiration and we try to do our little part to help the childhood cancer community through Juan Pablo’s Inspire Awesomeness.
Madilyn or Maddie was diagnosed 5 days after her first birthday. We had her party 3 days after her actual birthday, and the next day discovered she had a “mass.” We weren’t told officially it was cancer until the 5th day after we noticed the mass. She stopped crawling, stopped using her hands to feed herself, leaned to one side, stopped supporting her head, was whining and sleeping all day/night.
Maddie had an external shunt placed in her head to remove excess CSF fluid buildup that was causing pressure in her brain. Then, she had a tumor removal surgery. Followed by a permanent shunt surgery. Her next major surgery was to place a sub q port in her chest to administer chemo. Her most recent surgery was to remove that port due to infection. This coming week she will undergo surgery again for a new sub q port.
She’s had multiple MRIs, CT scans, a lumbar puncture and probably close to 100 needle pricks. Maddie has received chemo at this time.
We are from Michigan but moved to Tennesse for treatment. My other daughter will be 3 in January but is in Michigan with my mother. The girls only FaceTime when we have the chance throughout the week. Because I’m a single mother, I’ve also had to move back in with my mother (once we return home).
Maddie cannot speak like other children her age and cannot walk. Others her age are walking or beginning to take their first steps. They can also say a handful of words. She is a little off-balance, and when active requires a helmet to protect her head if a fall occurs.
Damian loves to dance! He loves being able to play with his brother. He never complained about what was going on and has always been willing to go to his doctor visit, even if it meant pokes and medicines which we hated.
Damian was diagnosed in April of 2019 after several doctor visits for symptoms and 2 ER visits. Damian started with occasional vomiting which later became more frequent with headaches. He had no other symptoms and that made it difficult to diagnose with one visit to his pediatrician.
He had an 8-hour brain surgery to remove his tumor. He completed 30 radiation treatments where he had to be put to sleep with anesthesia. He had multiple hospital admissions for fever. He had to complete 4 cycles of chemotherapy where he had to be hospitalized each time.
The biggest struggle is we couldn’t not focus on our other children at home during Damian’s illness. Our kids have been very patient with us while we care for Damian. We want to have more adventures together rather than buy stuff. We don’t take health for granted and appreciate each healthy day.
We are so proud and amazed at Damian’s strength and courage throughout his journey. He is the youngest of our family and he has taught us so much. We all look up to him.
In the summer of 2017, Jaiden was complaining of headaches during martial arts. He woke up with vomiting and headaches for several days before we got imaging that confirmed Medulloblastoma.
Jaiden has had seven months of chemotherapy along with several surgeries. He now suffers from double vision, left-sided weakness and balance issues. He also has some hearing loss as a result of chemo.
Cancer has changed us but it also brought us closer together.
