Born with Leukemia

I remember after finding out I was pregnant I would go back and forth between hoping it was a boy and hoping it was a girl.  I hoped he/she had blonde hair and green eyes.  I hoped she would be a girly girl.  I hoped he would be sporty.  I hoped a million and one things.  Above all else though, I hoped my baby was healthy. 

I think every mother just wants a healthy baby.  Eye color, hair color, gender, none of that matter the second you lay eyes on your new baby.  In a glance, your heart swells full of love that is impossible to describe and impossible to comprehend.  All that matters is that first cry that lets you know your baby is breathing.  All that matters is that moment with the doctor when you know your baby is healthy.

What if that moment never comes though?  You're already in love.  You know your baby is beautiful.  But what if she isn't healthy?  What if the moment you're supposed to be on cloud nine, the doctor's prognosis sends you crashing back to earth?

Today's guest blogger is Beth from Molly Merchant.  Beth story is one of courage among mothers.  And her daughter's story is one of hope.

Born with Leukemia



Leukemia? In my baby girl?


By the time the hematologist came to my hospital room that cold, bright morning in March, I thought that I had heard it all. In the past 24 hours, I had heard about heart defects, fluid around the heart, a swollen liver and spleen, Down Syndrome, and numbers, figures and terms that I could barely comprehend.


The hematologist pulled a chair next to my bed and kindly introduced himself. I was a captive audience for this man. I could barely move since my emergency C-section the day before. Percocet was numbing the pain in my belly and my reflexes.


“Your daughter has leukemia,” he gently told me.


I sat propped in my bed, numb and scared. All I could do was blink and with each blink, tears spilled from my eyes.


And this man, so compassionate, told me how sorry he was. He told me how much he admired parents like me who dealt with cancer in their children.


Admired parents like me? I hadn’t even been a parent for 24 hours. I hadn’t even held my daughter and only saw her briefly from across the room before she was rushed to the NICU.


And now this. Leukemia? In my baby girl?


The drugs looked yellow, frightening, and poisonous


My husband and I soon learned that our daughter had TMD (Transient Myeloproliferative Disorder), a form of leukemia that affects babies with Down Syndrome. The enlarged liver and spleen were by-products of this cancer. The heart defects and pericardial fluid were part of a complex medical puzzle that neonatologists, nurses, and dozens of other specialists monitored closely. Talk of “blasts, counts, and 02 sats” quickly became a part of our daily vocabulary.


Our daughter’s home was in the NICU for the first weeks of her life. And at three weeks of age, she received chemotherapy. The chemo drugs were only one course of a very mild treatment (compared to other chemo drugs). We were told this time and again by the hematologists and other specialists. I know this was supposed to be reassuring, but it wasn’t. It was all incredibly scary.


The drugs looked yellow, frightening, and poisonous to me, like an IV drip of Lysol for my baby girl.


Our questions and concerns were many. Would the chemo work? Would we have to do another treatment? Would she lose her hair? What next? And we had these questions in addition to the many surrounding the open heart surgery, which was looming somewhere in the distance. And of course we wondered about Down Syndrome and what her quality of life would be IF she made it through all these medical issues.

Erin (right) who was born with leukemia and her little sister.

Our little girl was a fighter


She was released from the NICU at six weeks of age. Our visits to various doctors were frequent. We saw the hematologist twice a week, where they closely monitored her blood counts and felt her liver and spleen for any changes.


It was very touchy those first few months. One visit we would be cautiously optimistic and the next, more chemo appeared imminent. An outpatient visit for a procedure turned into an overnight stay.


Her immune system was compromised and she couldn’t go anywhere but to doctor appointments. We couldn’t take her to visit family, friends, the store, or to a play date.


We kept her on a routine. We let her rest. We watched her closely and loved her more and more each day.


At six months of age, she had successful open heart surgery.


Our little girl was a fighter. She was tougher than anyone I had ever met.


And our questions were answered in time. She never needed another round of chemo. We were incredibly lucky that the initial treatment worked. Her blood counts began to normalize and her liver and spleen went back to their almost normal size. She never lost her thick, gorgeous hair. Our visits to the hematologist became fewer and farther between as she got older. When we got to the point when she only needed to see the hematologist every few months, we were thrilled.


And we still go to the hematologists, but only once a year. Once a child with TMD makes it past the age of five and has survived the leukemia, reoccurrence is extremely rare.


And her quality of life?


It’s great! She’s a thriving, healthy, happy 7 year old girl. She loves school, loves her friends, and loves the life she fought so hard to keep at the beginning.




Beth blogs at Molly Merchant, where she talks about her favorite topic – gifts. She shares ideas for the tangible, and her appreciation for the intangible.

I can't imagine anything worse than knowing that before my baby was even born, he was being taken away from me by a disease that is treatable.  Every day progress is being made to find a cure and more treatments for leukemia.  And every day parents, including parents who have been so for less than 24 hours, are learning their children might not survive this disease. 
 
Give these babies and children a chance to fight and to live.  With your help we can find a cure for leukemia and no other parent will have to face that moment of fear that their baby might not even come home from the hospital.  Please donate to the Leukemia and Lymphoma Society by clicking on the donate button at the top of my sidebar.  Every dollar helps.  Beth, Erin and their family give me hope.  Give some back to them.