My son Maximiliano (Max or Maxito) was diagnosed at 18 months old on June 4, 2020. He was a happy little toddler jumping around before then so this diagnosis was more than a shock to us.
Three days after his pediatrician saw him at his 18-month check-up and gave us a clean bill of health (despite some concerns with bruising, rash -petechia, and expanded tummy that I had as a mom) he woke up with bleeding gums and I called the pediatrician’s office, scheduled a zoom appointment. The attending partner talked to us and I showed her the pictures and described the symptoms I had described previously to her partner. She immediately sent us to get blood work done and we received a call with the results within one hour.
We spent the first month after diagnosis at the hospital. He had multiple lumbar punctures so far as part of his treatment. He also has had chemo, 2 bone marrow biopsies, PICC line placement, and port placement.
Mental and financial struggles are the top two we face as a family at the time. Additionally, unable to have others support us when we are inpatient due to the pandemic.
Max is teaching us to be brave and he makes us stronger than we ever thought we could be.
On June 21, 2019, my sweet, goofy little boy, Samuel, turned 3 years old and we had a big celebration. We threw Samuel a beautiful birthday party surrounded by family and friends at a local farm. The kids played, fed the farm animals, went on pony and tractor rides, and ate pizza and cake. It was a day Samuel still remembers and talks about, he has such a bright mind for a 3-year-old. He has always been so bright, even as a baby, saying words like “tickle” at 10 months old. I’ve always called him Mr. Harvard, my big boy has always been so smart.
Samuel spent the summer days after his birthday at school, while Joe and I worked. He’s always loved school and we always have loved his teachers, they are truly beautiful humans. The summer was full of fun, water play, and outdoor activities. Weeks leading up to Samuel’s cancer diagnosis, I noticed he had been extremely tired. My initial thought was that he must have worn himself out at school playing in the sun. He started to come home with bruises on his legs and every time I’d ask him what happened he’d say he was pushed at school. Samuel then started to have a low-grade fever, I said to myself “man toddlers are always getting sick” and thought nothing of it. Then I worried more when he started telling me his stomach hurt, this was on and off for two weeks. I even asked his teachers if he had said anything at school but he hadn’t. So I chalked it up to constipation. At the time I had been packing for our first family trip to Disney World and had hoped Samuel’s “cold and constipation” would resolve by our planned trip on August 13th.
On August 6, 2019, Samuel’s teacher called me at work and told me that he just wasn’t acting himself. I left work early to pick him up and take him to the doctor. I thought maybe he needed antibiotics for his “cold” and wanted to make he got them before our trip. I took him to our pediatrician, whom I absolutely adore. I told her about the low-grade fever, the stomach aches, the bruising, and the overall tiredness. She gave him an exam, felt his belly, and then told me to go to the room next door for an abdominal x-ray. She said she’d call me later with the x-ray results. I left with an uneasy feeling. When we got home I started googling and my heart sunk…all the symptoms Samuel was experiencing sounded like leukemia. But no, no, no that’s just silly to even think that, remember don’t be “Dr. Google”, maybe it’s an infection, it’s got to be something else. Joe left for work that evening. I got both boys in the bathtub.
7 pm…the phone rings. Dr. Pola tells me that I needed to take Samuel to Advocate Children’s Hospital in Park Ridge. My heart sinks, she tells me that there is a specialist there she wants Samuel to see. She tells me the X-ray confirms his spleen is enlarged. I remember her saying “don’t worry just make sure you get to the hospital to get his spleen checked out and I’m going to call them and let them know you’re on your way.” Ok so my thought, there’s an infection in his spleen, that’s got to be it. That explains the low-grade fevers and the stomach aches right? I call a friend to come to watch Luke, and Joe met me at the hospital.
In the ER we are visited by many doctors over the next couple of hours, all asking us to tell them the same story over and over. Repeating all the symptoms. They keep asking me about the low-grade fever, the stomach aches, the bruising, and the overall tiredness. The low-grade fever, the stomach aches, the bruising, and the overall tiredness… low-grade fever, the stomach aches, the bruising, and the overall tiredness. My heart is sinking lower and lower, my thoughts are racing, yet everything felt like the world was slowing down…I utter in my head…” this isn’t normal…is this leukemia…was google right…why are they asking me the same thing…no, no no that couldn’t be…Samuel is big and healthy…”
12 am…I fell to my knees…the ER doctor has confirmed my worst nightmare. Did I really hear her say “I’m so sorry your son has CANCER.”?
Samuel failed induction and his risk category changed to Very High Risk, which meant stronger chemotherapy and longer hospital stays. Our struggle is that we do not have much family support. It’s mainly just us and help from one set of grandparents, who are older and grandpa is battling cancer himself. For parents of a child with cancer, all you want to know is will he live? Will he make it? Can he be cured? Will he live a long and healthy life? And when the doctor tells you they aren’t able to answer that question with 100% certainty it is the hardest thing to accept. There is so much heartache.
Samuel is STRONG, he is beautiful, smart, and a WARRIOR. Samuel was made for greatness and he will overcome. His smile lights up the room, he’s so sweet and always reminds us that he loves us.
Breya is a beautiful young lady who is always smiling and enjoys life! She has a sweet spirit. She loves basketball and has committed to play basketball at Liberty University. She is currently a senior at Charlotte Christian School and will graduate in June 2021.
Breya was an extremely healthy athlete who began to experience shortness of breath and fatigue when practicing and playing in basketball games. She also experienced random wrist, knee, and neck pain that occurred for a few days and then disappeared. She also began to experience headaches as well. For this reason, we brought her to the doctor and she was diagnosed with possible exercise-induced asthma and a possible sinus infection. On 1/16/20 during a basketball game, Breya couldn’t catch her breath and almost passed out, so we brought her to the ER. She was transferred to Levine Children’s Hospital and diagnosed the following morning with Pre-B ALL.
This has been a journey for Breya and the rest of the family, but God is good and has us all in His hands and we trust Him completely in and through it all!
Phoebe was diagnosed with ALL in August 2018, one week before her second birthday. A couple of days before Phoebe’s diagnosis she was fussy and not herself at all. Then the next day, she woke up with a low fever and her symptoms just started progressing rapidly. She went from looking a little off when walking to a limp, to refusing to walk by mid-afternoon. I took her to urgent care that evening and they found petechiae and sent us to the emergency department at our local hospital. After more tests, they transferred us to the Children’s Hospital of Philadelphia in the middle of the night, where she was admitted to oncology. In hindsight, Phoebe had been taking longer naps and had some odd bruising, but nothing that could have ever made us realize what she was going through. It felt as if Phoebe went from a happy- joyful toddler to fighting for her life overnight.
We have had to be extra careful to avoid germ exposure, which has meant that Phoebe has missed out on many of the experiences kids her age enjoy – for instance, at times she has stayed home from nursery school and she has not been able to do things like taking ballet lessons with her friends. We have had to avoid crowds, say no to events and vacations, and holiday celebrations because of possible germ exposures.
Phoebe’s health has been a source of stress and anxiety for all of us, but Talya, Phoebe’s older sister, has been most impacted as she has not always been able to participate in the activities she would like to do to protect Phoebe from germs. Now, with COVID-19 and Phoebe still having a weak immune system, her sister was not able to attend camp and could have to stay home from school to protect her sister. Our family life has had to put Phoebe’s health and safety ahead of all other needs and concerns. We do the best we can to support one another, but it has been challenging.
The worst is behind us, but the path forward will require lots of monitoring for Phoebe, therapies, and tests to see if the treatment left lasting damage to her physically or will create learning and memory problems as she approaches school age, and healing for our family.
My son was diagnosed with ALL in August of 2017. Before he was diagnosed, he cried, had lots of pain, and passed out. I took him to the ER and they initially told me it was a breath-holding spell. Once they took blood work they discovered he was critically low on white blood cells, platelets, and red blood cells. They also found blasts in his blood, all typical signs of leukemia.
He has gone through 22 lumbar punctures, neuropathy from vincristine, and lots of oral chemo pills. We try to keep things as normal as possible but it’s hard. Tripp has an older sister that has been amazing through these past few years allowing us to focus on him.
He finished treatment in October of 2020 and we couldn’t be more happy!
Alexa is amazing, she’s very resilient and strong. She’s not sacred any more of any of her procedures. She has learned to accept her illness. She likes to play in the park with her little cousin. She loves playing with her dolls. If you see her you wouldn’t believe that she has gone through so many difficult times in her little life.
Alexa was diagnosed with Acute Lymphoblastic Leukemia on May 3rd, 2019. Just before she was diagnosed her white blood cells and platelets were low and she had an odd diaper rash.
Alexa has received chemotherapy, blood and platelet transfusions, lumbar punctures, antibiotics, oral chemotherapy, dressing changes, and many hospitalizations. She has been in the ICU three times. This journey has been the toughest and roughest experience of our lives. The isolation, fear, and negative thoughts and feelings were overwhelming but also got us closer to God and as family.
This illness can break you or make you stronger. We made the decision to become stronger and help our little Alexa to fight this beast (cancer) with no fear and with a lot of faith and hope.
