Leah is a tomboy at heart. She loves dinosaurs, coloring, and playing in the dirt. She also loves cuddling up and watching movies with mom and dad.
In August of 2021, Leah was taken to Vanderbilt children’s hospital where she was diagnosed with Acute Lymphoblastic Leukemia. Leading up to her diagnosis, she had fevers, cough, pale skin, and had been sleeping all day. Her treatments include bone marrow biopsies, port-a-cath placement, and chemotherapy.
I have 3 boys, Mark (22yrs) Matthew (17yrs) Michael (14yrs). Mark & Matthew love baseball and are big Astros fans, they love to joke around, watch comedies and just sit around watching funny YouTube videos. If they’re not playing video games they’re trying to build a robot or take things apart and put them back together.
Matthew was diagnosed with Acute Lymphoblastic Leukemia on the Memorial Day weekend of 2019. What was supposed to be the start of a great summer vacation turned out to be the worst memorial weekend ever. In February 2019 Matthew had been complaining about being tired all of the time and had frequent headaches. He was scheduled to take a few important exams that month so I blamed it on that, He was worried and stressed about the tests. Spring break came along and I literally had to drag him outside, still complaining about headaches, tiredness, and his legs hurting (which I blamed on him growing). I made an appointment and all his pediatrician said was that he had the “kissing disease” and that he would be ok within a few weeks. I could tell he wasn’t himself but I just blamed it on stress from being a freshman in high school and growing pains. That went on from February to May, off and on till he collapsed on me on Memorial Day. I should’ve asked more questions about the so-called “kissing disease” or asked for more lab work but I thought it was just all normal.
We are blessed to say that Matthew is now in maintenance and doing well. He’s had countless chemo treatments, lumbar punctures, bone marrow biopsies, and many long hospital stays. We have ongoing financial stress, Covid didn’t help and all we can do is try to meet those financial needs on a daily basis.
Matthew is a fighter, He lost 60 bs the first year that he was diagnosed, lost his smile, the sparkle in his eye; he had to use a walker and wheelchair to move around. He worked hard through physical therapy to regain his strength and worked hard to gain his weight back – slowly his smile and sparkle in his eyes started showing up again.
On June 27th, 2018, our three-and-a-half-year-old son, Noah, began falling and complaining of pain in his left leg. He also was having severe stomach pain and labored breathing. Three days later, we went to the ER and were admitted for testing and observation. All of his tests and labs came back normal. For the next four weeks, we were back and forth at different doctors trying to figure out why Noah continued to have difficulty walking, labored breathing, severe abdominal pain, intermittent fevers, nose bleeds, and the need to sleep all the time. One Sunday afternoon, as Noah was once again with a low-grade fever and wanting to nap, I asked him what was wrong. He responded with, “Mommy, I am very sick. You have to help me.”
Finally, Noah’s second GI panel came back abnormal showing that he had bacterial overgrowth. This led us to a GI specialist who ran blood work on Baby Noah. The next day, July 24th, 2018, our GI specialist called and said all of Noah’s labs were abnormal. She said there was no way his labs could be this abnormal and that she thought the test was skewed. I asked her if he could have some form of cancer and she said, “If these labs are correct, then I am very concerned for his health.” She sent us to the ER to be retested. Before I called my husband at work, I looked up every abnormal lab that she had mentioned. His platelets were at 9,000, his neutrophils were at zero, and his white and red blood cell counts were low. Every abnormal lab I looked up said “leukemia.”
That night, in the ER, as we waited for our results, we heard the doctor outside the door take a deep breath and say “OK” as he opened our door. Before he could even speak, we asked him if Noah had leukemia and he said everything was pointing in that direction. He said it could still be a virus, but that a hematologist would be down to see us. Twenty minutes later, Dr. Spiller came into our room. We asked her what kind of leukemia Noah had and she said it appeared he had Acute Lymphoblastic Leukemia. Everything was confirmed the next day, July 25th at 3:00 pm.
We never realized how hard our journey with leukemia would be. We were in shock to know our baby had leukemia and then devastated when he became high risk to relapse due to an elevated MRD on day 8. Noah had instant complications. From hypertension to tachycardia, to pericardial effusion, and a staph infection in which his port was removed and a PICC line was placed, everything was spiraling out of control. Noah even had a reaction to the plasma in the platelets which landed him in PICU. Noah’s journey was difficult from the beginning. He ended up losing 15% of his body weight on steroids and needed a feeding tube for three and a half months. He also developed severe neuropathy in which Noah was bedridden and could only move his eyes. He was unable to walk for two and a half months. At one point, he was the sickest child on the oncology floor and one of the hematologists called him the “mystery ALL child.” If it could happen, it was happening to Noah. Every day was a new crisis.
Our lives are forever changed. We no longer worry about the things we used to because they never really mattered anyway. We enjoy the simple things more and appreciate each day we have together.
April was diagnosed with leukemia on September 16, 2021, just 4 days before she turned 6 months old. April had a couple of days with low-grade fever so we thought she might be teething. We waited until the 3rd day to talk to the family physician. By then I noticed she had a few tiny bruises on her leg and buttocks. The family physician told us to bring April to the emergency room right away. We didn’t know at the time but I think he knew what was going on with April. In the emergency room, they did blood work (CBC), and shortly after the doctor came in to deliver the news.
Childhood cancer is something not being mentioned or talked about enough. The struggles we face are not only financially but a lot emotionally. Because of the treatment, April has to be inpatient quite a lot thus we have only one parent working. Then the pandemic hospital won’t allow more than one caregiver. We also have an older toddler at home, so it’s a struggle.
The moment we got the diagnosis our world just turned upside down. We were living in a one-bedroom plus den apartment but now we have to get a bigger place because we need to have a cleanroom for April and to have a separate play area for her brother for infection control purposes. We don’t go to family get-togethers. April has not seen the grandparents since diagnosis until just recently.
April is a happy toddler. She waves at everyone she meets whether in the elevator or on the street. She loves to dance and sing.
Madelynn is a happy, sweet girl. She loves arts and crafts, making books, reading, taking hikes. I think her little sister makes her laugh the most!
Maddy was diagnosed with cancer just a few weeks after she turned four in August 2019. She’s been through so many treatments -IV chemo, IT chemo with sedation, daily oral chemo for 1.5 years, surgery, PICC line placement, and PICC line failure. At this moment we are not facing struggles due to treatment but we definitely have during this long journey!
As parents we are constantly on edge, fearing the worst, and analyzing any symptom she may have. We are still pretty quarantined and very limited in the things we feel are safe for us to do.
Kellan loves to learn and is always curious. He is VERY ticklish so that will guarantee to get a giggle out of him. He loves geography and is very knowledgeable about our states/capitals and countries of the world. Currently, he loves watching the Amazing Race. He likes solving clues and missions.
Kellan was diagnosed with Pre-B ALL in April 2019. He was 4 years old. He failed to reach MRD negative after the first month of treatment and switched to the very high-risk treatment protocol.
Before his diagnosis, Kellan complained about knee pain for about a year, and the doctor attributed it to growing pains. He had nosebleeds as well. A few weeks before the diagnosis, we noticed fatigue, petechia, and swollen lymph nodes.
During treatment, there were periods when he couldn’t walk or felt pain when walking. Although he can get around independently now, I feel his gait is slower and he tends to drag his feet. He’s still using two feet on each step when going downstairs.
This has turned our life upside down. We had to take it day by day. We couldn’t plan for anything because things could change in a split second. It affected all aspects of our lives particularly employment which we need to keep to pay for bills.
On a positive note, the diagnosis forced us to cherish the little moments more than ever and try to live every day to the fullest.
