Lincoln’s B-Cell Acute Lymphoblastic Leukemia (ALL) Diagnosis
We’ve all heard the phrase “every parent’s worst nightmare”. It’s often spoken in hushed disbelief surrounding moments of trauma. Every parent fears ever being told that their child has cancer. It’s a fear we all have, but no one ever expects it to actually happen to them. I didn’t, either…until it did.
Did you know that your child is MUCH more likely to be diagnosed with cancer than he/she is to win the lottery? It’s true. Odds of winning one of the most popular lotteries in the U.S. are 1 in 176 MILLION. However, one out of every 285 children in the U.S. will be diagnosed with cancer before they turn 20.
Since our boys were born at 23 weeks, 6 days gestation, we’d already had our fair share of difficult medical conversations before Lincoln was diagnosed. We were frequent visitors to practically every department at the children’s specialty hospital. Ironically, anytime we were at the hospital going through something difficult, Josh and I would walk past the Oncology department and think—or sometimes say out loud, “Things could always be worse!” Even so, we never expected to be told one of our boys had leukemia.
Here is my Facebook post where I announced to our friends and family that Lincoln had cancer:
“They say a picture is worth a thousand words, but here are a whole bunch more:
To say the past few days haven’t gone as planned for us would be the understatement of the century. Josh and I had a couples’ massage date all booked for yesterday to help us relieve some stress. Instead of going on that date, we found ourselves back at Primary Children’s Hospital with Lincoln. The short version of the story is that Lincoln has been diagnosed with leukemia.
If you’re reading this news for the first time, then you probably feel a lot like we did at first…utterly and completely shocked. It had been a long month and a half for us, with Lincoln on his third antibiotic to clear up ear infections. He’d been miserable, we’d all lost a LOT of sleep, and things still didn’t seem to be greatly improving. He also had a sore on his bum that was getting worse. The boys had their three-year wellness exams scheduled for Thursday, so we were looking forward to hopefully getting Link’s sore taken care of and having him finally be on the mend. After looking at Link’s bad abscess and seeing how miserable and pale he was, our pediatrician thought it’d be best for the surgical team at Primary Children’s to take a look at him. Josh and I weren’t surprised by that, especially considering Link’s complicated history and how bad the abscess was.
Hindsight is 20/20, and we see all of the signs clearly now, but cancer wasn’t even on our radar when we checked in to the ER. We were worried about Lincoln’s pain, fevers, and especially possible sepsis. Then the doctor blindsided us by telling us that his bloodwork showed several red flags consistent with leukemia. More tests confirmed our worst nightmare.
We found out what type of leukemia he has yesterday. He’s been diagnosed with B-cell Acute Lymphoblastic Leukemia (ALL). It’s the most common type of childhood cancer. It’s the “best” diagnosis out of several bad ones; it’s still cancer, after all. Depending on some more factors we’ll find out over the next month, the survival rate is anywhere from 88-98%. Right now, Link’s considered a “Standard Risk” patient.
Since we got up to our Oncology room, Lincoln’s received two blood transfusions and three platelet transfusions. They’re going to be taking him into surgery any minute to place a port, get an echo, and do a lumbar puncture. The surgery will take about two hours; then it usually takes him awhile to wake up and get back to the room. Then he’ll start chemo later today. His treatment plan will last for about 2-1/2 years.
TL;DR: Lincoln has cancer. This sucks. Life isn’t fair. BUT Lincoln is strong. He’s the strongest little dude we’ve ever met. The Lord is on our side, and we have faith that things will go well. Please pray for us. ❤️🙏❤️”
I posted that on January 25, 2020—two days after Josh and I had been told that Lincoln had cancer. Almost as shocking as it was to hear his diagnosis, sometimes it’s hard to believe that Lincoln is now 100% done with his treatment! We got through it! We all survived! When you hear that your child is going to be going through treatment and getting chemotherapy for OVER TWO YEARS, it’s hard not to feel defeated just as the fight is beginning. However, with faith, perseverance, and patience, eventually we stepped out of the dark and into the light again.
I’ve always felt a strong pull towards trying to help people. Now that I’ve been through “every parent’s worst nightmare”, I simply HAVE to try to help other parents who are still in the trenches. I HAVE to spread awareness and advocate for these precious children who deserve so much more.
One thing Josh and I learned is that even though ALL is the most common type of childhood cancer, it’s still very rare. Most pediatricians only encounter a child being diagnosed with cancer 1-3 times in their entire career. This means that even if you have an excellent pediatrician (which we did/do), it’s unlikely that he/she has a lot of experience witnessing the signs of leukemia. That’s why it’s so important for YOU to know the signs of childhood cancer.
Every child is different and manifests different symptoms in varying degrees, but here are some common signs and symptoms of childhood leukemia: - Fatigue* - Weakness* - Feeling cold - Feeling dizzy or lightheaded - Shortness of breath - Paler skin* - Infections* - Fever* - Easy bruising and bleeding - Petechia (tiny red spots on the skin)* - Frequent or severe nosebleeds - Bleeding gums - Bone or joint pain, especially in the legs - Swelling of the abdomen - Loss of appetite and weight loss* - Swollen lymph nodes* - Coughing or trouble breathing - Swelling of the face and arms - Headaches, seizures, vomiting* - Rashes or gum problems *Denotes symptoms that Lincoln had prior to his diagnosis (He probably had more than these, but since he was/is mostly nonverbal, these are the only ones we KNOW he had.)
I don’t want to be an alarmist. MOST of the time if your child is experiencing some of these symptoms, it’s NOT because he/she has cancer. However, if he/she has several of these symptoms for a prolonged period of time—especially if you “just feel that something’s off” or “just have a gut feeling”—take your child to the hospital. Insist that they get a Complete Blood Count (CBC). Follow your gut.
Words will never be able to describe our gratitude for Lincoln reaching remission and having such a favorable survival prognosis. Though this childhood cancer “club” isn’t one I’d want for anyone, if you’ve found this blog because your child was recently diagnosed, know that you’re not alone. Know that others have walked the same path and come out victorious on the other side. Know that the next several years of your life will be some of the hardest of your life, but also know that you WILL also experience moments of profound gratitude. You’ll see the good in people. You’ll meet some of the most amazing people on this earth. You’ll feel more love than you probably ever have before. You’ll witness miracles.
