“Many parents’ worst fear is something terrible happening to their child. Thankfully, most parents never have to actually face those made up, worst case scenarios. Unfortunately, as a young mother, I had to face the worst word possible, ‘cancer.’ When our son Luke was 18 months old, he was acting different and I noticed he had many random bruises. He was acting very ‘off.’ Tired, lethargic, and clingy. I was super afraid. So, I did what any crazy, hypochondriac first-time mom would do, and Googled his symptoms. The first WebMD diagnosis which came up was leukemia. The second I read the symptoms, I knew this was exactly what he had. I immediately called his pediatrician and made an appointment for the next day. My husband was coaching a basketball game two hours away, so my son’s sitter went with me. At the appointment, the doctor just thought it was anemia and told us to get his blood drawn. It would be a week before we got results. We both didn’t like this answer, so instead we went straight to the children’s ER. They drew his blood, and like a blur an hour later I was told the worst news ever: ‘Your baby boy has leukemia, a blood cancer.’ When they told me he had cancer, I was just in shock. I didn’t cry, I didn’t do anything. I felt like I was not crazy for thinking the worse case scenario for once.
We were immediately transferred in an ambulance to Shand’s Children’s Hospital. I had to call my husband and tell him his only baby had cancer over the phone while he was two hours away. I remember him wailing and crying like I’ve never heard before. It was the most traumatic part of the whole experience. Then when we got to the PICU the doctors told us Luke also had a nine centimeter mass on his heart and it was blocking his airway. I still remember how scared I was when the first drop of chemo went into his little IV in his tiny 18-month-old arm. I was so confused and scared and didn’t understand any of the medical words they were telling us. The doctors and nurses were very comforting and helpful, we just had no clue how long or what to expect. They tried to take it one day at a time and not overwhelm us with the future we had ahead of ourselves.
We were so scared the first time they put him to sleep and didn’t know how he would do under anesthesia. I remember praying and fasting like I never had in my whole life. I remember being in the PICU and feeling like we could literally touch God, He was so close. When we got the results his 29 day bone marrow aspiration had no leukemia cells detected, I thought we would get to go home and be normal again. After 29 days of hardcore chemo, they do a bone marrow aspiration and check if the leukemia is gone (85% of the time it is in remission after 29 days). Think of it like shocking a pool to clean it, but then having to maintain it. This is how leukemia is. You have to get rid of it at first, and then suppress the bone marrow with chemo for three years until it learns how to make healthy cells again.
Then, we found out leukemia has a 3.5 year treatment. Then a month into treatment, Luke got a blood clot and had to get a very delicate surgery to break up the clot. I had to give him shots twice a day in his belly for over a year. We found his blood clot when we were staying at the Ronald McDonald House and were about to go on a Valentine’s Day date. My mom was supposed to come stay with him and we noticed his leg looked swollen and bruised behind his leg where his PICC line was. We cancelled our date, took him to the ER, and low and behold it was a big clot in the back of his leg. They had never done that delicate of a surgery on a 19-month-old. The youngest patient to get this surgery was 13.
There are so many memories of Luke’s hard first year of treatment. I remember him getting his port placed and watching them stick a one inch needle into my baby’s chest, and trying to pretend like it was fun and not scary. I remember the many, many weeks of sleeping in the hospital, constantly hearing beeps and waking up to check if he was okay. I remember praising God when they told me the chemo melted his mass on his chest away. I remember when he stopped walking for a month because of the month-long high doses of steroids. I remember how fat his cheeks got, and how he only wanted to eat cheese for a few months.
I remember him having adrenal failure and having to be weaned off steroids. I remember Luke having dance parties with his night nurses, and how he charmed all the nurses and doctors. Luke used to watch Disney movies all day every day, and he loved watching Monsters University. There’s a dance scene at a frat house in the movie, and Luke used to get so excited and dance with the nurses every time it came on. It was so cute with his little IV pole and bald head dancing. I remember living in the Ronald McDonald House for four months, and how scared we were to move back home. I remember having 4-6 week delays where his counts were so low he couldn’t receive chemo, and had to be in isolation to protect him from getting sick. I remember him having anaphylactic shock, and thinking he died right in my arms. One day, in outpatient clinic, Luke was getting chemo and an antibiotic infused, when one of the nurses pushed the medicine too fast in his port and it caused an anaphylactic reaction. He passed out, turned white, and his blood pressured plummeted instantly. It was the scariest moment ever. They got an EpiPen and stabbed him in the leg with it and he started coming to. We were rushed down to the ER to make sure he was okay. Another crazy, scary moment in our journey.
I remember his beautiful blonde hair falling out. We let his hair fall out naturally, never shaved his head totally, because he didn’t lose all of it, just most of it. I remember my father-in-law randomly passing away in the midst of all this chaos. I remember Luke getting so many lumbar punctures, blood and platelet transfusions. I’ve lost count. I remember having to hold him down and force yucky medicine in his mouth many times a day. I remember the hundreds, maybe even thousands, of people who sent us cards, gifts, money, and messages they were praying for us. I remember having to quit my job. I remember missing tons of family and church functions because we couldn’t risk getting sick. I remember all the times I’ve stayed up all night worried sick and every time God taking care of what I worried about. I remember having to reschedule vacations because we were supposed to be done with the hardest part of treatment in 6-9 months, and Luke took 14 months. I never felt hopeless, I felt lonely, but this was because everyone else moved on with their lives, while ‘cancer’ consumed our lives for four years. It was hard, but my mom was a big support and helped us a lot.
Luke finally finished his leukemia treatment on June 16, 2019! He rang the bell and has been off all chemo and medications for a year and a half, but we still have to go monthly to get his blood counts checked. The ‘scanxiety’ every month is still so hard. We pray and hope for the best each month, and deep down still have a never-ending fear this terrible disease could return. Luke graduated kindergarten last May, and we’re so proud of all his accomplishments and how much he has overcame! He is a true warrior! Luke knows he was very sick as a baby, but now he’s six, and he doesn’t remember the HARD HARD days, just that he is still very immunocompromised and his immune system is still so low from the four years of chemo he can’t go to school this year. He is bummed he can’t be a normal kid.
We are so grateful to have our little boy with us. Many along the same journey have unfortunately lost their children, and we never want to take his health or life for granted. God has been so good to us. Throughout all the fear and unknowns, God has been our anchor. He has brought joy to our lives only He could bring. I don’t wish an experience like this on ANYONE, but I do wish everyone could experience the closeness of God during a trial. No one is immune to trials, so whenever God chooses to allow a storm in your life, ‘Turn your eyes upon Jesus. Look full in His wonderful face, and the things of this world will grow strangely dim, in the light of His glory and grace.'”
This story was submitted to Love What Matters by Lauren Lambert. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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