Avery was diagnosed with ALL in April of 2020 when she just turned 6 years old.
At first, she complained of neck pain for a couple of days. Then she complained of leg pain. We called her doctor and she told us since no fever just to monitor for now. Due to covid and the shutdown, they didn’t want to bring any unnecessary doctor visits.
She then started to have a low-grade fever and feel more fatigue. Again, we called her doctor and her doctor again told us to monitor and not bring her in for an exam since it’s only a low-grade fever. Each day, her pain would move around. One day it would be her leg then the next day her arm and the next would be her hand. It just constantly jumped around.
After a week of low-grade fever and random pain in her body, she started to have a high-grade fever. Again, we called her doctor through zoom due to covid. They told me to monitor her again and call back if her high-grade fever lasted more than a week. It did and she was in a lot of pain night and day. The next day we called her doctor again, and that time Avery was screaming in excruciating pain during our zoom conference with her doctor. Finally, they told us to bring her to urgent care right away.
Once we brought her to urgent care, her pain faded. The doctor at urgent did a flu test, chest x-ray, and throat swab to rule out any flu or strep throat. I was hoping it was positive but it wasn’t. Then, they decided to draw a blood culture to rule out any bacterial infection and told us to bring her in for a covid test the next morning. The next morning we brought her into another clinic for a covid swab and right after we got home, her urgent care doctor called us and told us to pack our stuff and bring her to the nearest hospital right away. She told me to write down her blood count numbers.
As soon as the doctor told me to write down the blood count numbers, in my mind, I already know this must be really really bad. As I hurriedly grabbed a pencil and paper and write it down as the doctor told me her numbers over the phone, when she said white blood cell 570,000, I knew this must be blood cancer. I brought her to our nearest hospital. As soon as I got there, I cried as I parked my car. I knew it was leukemia and I can’t believe my little girl who was only 6 years old has cancer.
She has been through port placement, 3 dialysis, blood transfusion, 8 bone marrow biopsy/aspiration, x-ray, MRI, echocardiogram, car t therapy, chemotherapy, 50 plus days in-patient, numerous needle pokes to draw blood, and finger pricks. We have help from family members to watch our younger one when we have to take her out of state for any new treatments or any hospital visit due to covid restrictions.
She used to cry a lot during the first month of diagnosis and staying at the hospital getting all those needles and tubes poked into her little body. Over time, she got stronger and cried less and whined less which made it a lot easier not just for the nurse and doctors who are treating her but also for me.
Before her diagnosis, I was scared she got covid and wished it was just the flu she caught. After diagnosis, I wished she caught the covid and not leukemia. However, two weeks into treatment, we received even worst news. Her leukemia is so rare that it’s more aggressive and harder to treat with a poor prognosis…I wish it was the most common type and easier to treat with a great prognosis type of leukemia.
Eli loves to play soccer, even though he has many setbacks. He loves to watch the Houston Dynamo and the Astros.
Eli was diagnosed with T-Cell Acute Lymphoblastic Leukemia on February 5th of 2019. He had severe stomach pain for almost a year prior to being diagnosed. We went to many doctors and specialists but nobody could figure out what was causing his pain and were told that he must have irritable bowel syndrome.
Eli stayed in the hospital for the first year after diagnosis because of many infections. He had 21 blood transfusions and is now in iron overload. He is having two MRIs done to evaluate the damage. He has had many lumbar punctures throughout these three years. He is still taking chemo and needs physical therapy again. Eli also uses a walker or wheelchair and braces for neuropathy and drop foot.
Cancer changes everything and affects everyone around you. My other kids were not able to see me for most of the first year of Eli’s treatment. They had to stay with their grandparents and then when Eli was finally released from the hospital he was never able to return home to his apartment.
In spite of the many struggles, Eli enjoys entertaining people and is loved by so many!
Zayna is very sweet and kind. She is creative and loving. She loves her family and cousins. Zayna enjoys basketball and art and also loves baking. She enjoys playing board games with her family and spending time with her 2-year-old brother.
Zayna was diagnosed with Acute Lymphoblastic Leukemia several days before her 13th birthday. We thought she had an ear infection and she was on antibiotics – four days later she woke up with a swollen neck and face. We thought she needed a stronger antibiotic so we took her to the ER and that is when we found out she actually had Leukemia and had a mass growing on her chest.
During treatment, the entire left side of her body was paralyzed. She stayed in a rehabilitation hospital for 3 months, away from her siblings. She relearned how to walk and is now in the maintenance phase of her treatment protocol and back to her old self.
Cancer has changed us. We appreciate every day and just being able to be together – Zayna’s siblings were not allowed in the hospital when she was admitted and they sometimes went weeks without seeing each other, which was very hard for all of us.
Zayna loves doing things for others. Every time she would make a craft or art in the hospital she would make something for her siblings or cousins. Family is very important to her and we are grateful that we can all be together again.
Aubree is super smart and so funny. She is a silly girl who loves to make faces and make people laugh. Dancing is her favorite and she loves music. Her favorite shows and characters are Sesame Street, Daniel Tiger, Peppa Pig, The Grinch, Shrek, Frozen, and Moana. Aubree loves to play outside and go to the park. She loves animals, especially her Saint Bernard, Gus.
Aubree was diagnosed with B-Cell Acute Lymphoblastic Leukemia on Christmas Eve of 2021. Before her diagnosis, Aubree kept getting colds, one after the other. In hindsight, she had decreased appetite, was pale, and had bruising (which we assumed were normal toddler bruises) that seemed to take a long time to heal. She also had a low pain tolerance and was sleeping a lot and not playing as much.
Cancer has changed so much about our lives. Everything revolves around treatments and appointments and our income has dropped. We also have to be very careful about what Aubree is exposed to. Aubree’s baby brother was living with his mom for his first few months and is now finally able to live with Aubree and his dad too. The bond these siblings have is so sweet, they just adore one another.
Wyatt has a very outgoing and happy personality. He reminds me of my 94-year-old grandpa. He is very social and loves music and dancing. He also loves firetrucks, Blippi, and Spiderman. His favorite song is This Little Light Of Mine.
Wyatt was diagnosed with Acute Lymphoblastic Leukemia in September of 2021. Wyatt was a really active toddler and then all of a sudden, he stopped playing as much, didn’t have much of an appetite and he was getting random fevers. I noticed him having stomach issues so I took him to an on-call pediatrician and they told me he was fine. I looked at the doctor and told her I wanted an x-ray done on his stomach because something wasn’t right. The x-ray showed he was constipated but I still felt uneasy. I asked the doctor if this could be leukemia and she just said “no, those kids are much sicker than your son”. Three days later we rushed Wyatt to the ER and he had to be airlifted to Lurie’s Children’s Hospital due to his hemoglobin being 2.1. He was diagnosed with Leukemia in the ICU around 4 am.
The day after Wyatt was diagnosed he had the surgery to put his port in, a bone marrow biopsy, and a lumbar puncture. He has been through 5 phases of treatment and will be ending frontline treatment in May. My five-year-old daughter really struggles with this change. Being her age and having to see her brother go through treatment and having mommy and daddy put that extra care into him. Additionally, when his counts are low we pretty much stay home and play it safe to keep him from getting sick.
As a mom of two children, one being healthy and one having cancer I struggle with a lot of guilt. While I need to stay on top of Wyatt’s treatment and medications…also comfort him during it all, I sometimes feel like I’m failing my five-year-old. I know there is no way to prepare yourself for this part of parenthood. My daughter will ask why we leave sometimes and she can’t go with us. Her dad and I try to make sure we do special things for her to feel as loved as she is.
Hadley was in kindergarten and complained of leg and foot pain, and then started limping. We took her to the pediatrician and it was dismissed as growing pains. After a second visit, an x-ray and blood work both came back as normal, though she had a few markers of inflammation, and her doctor referred us to see a rheumatologist… with a 3 month wait until our appointment. One day Hadley’s school called to say she fell at lunch time and couldn’t walk. We took her to the emergency room and found out she had Acute Lymphoblastic Leukemia. She was otherwise a healthy kid, so being diagnosed with cancer came as a huge shock.
Hadley has handled the physical side of treatment very well, but the mental side is a different story and there have been many emotional challenges.
Going through cancer during a pandemic has made an already difficult situation absolutely horrific at times. Hospital policies like only one parent being allowed and no sibling visits were so damaging to our family.
Childhood cancer is a whole family diagnosis. We’ve struggled with the side effects of steroid rage, intense food cravings, complete loss of control at the hospital and clinic, severe anxiety, painful and scary experiences, and dealing with the trauma related to treatment. Children need to feel safe to thrive and enjoy their childhoods. Cancer robs them of that, and as a parent there is nothing worse than having to repeatedly bring your child back to the place of their trauma.
Hadley’s nearing the end of her 2.5 year long treatment, and will soon ring the bell. Then she’ll take her last chemo pill, but it won’t be over then. She’ll return to the clinic for more blood draws over the next 5 years to check for late effects of treatment and signs of relapse, meaning this fear will weigh on our shoulders until she’s 13 years old.
