I was just on my way out of the conference room, finished with a meeting at the large medical supply company where I had been working as a computer programmer for the past 7 years. When I look back on it now, I see the events as if I were not in my body. I see myself, wearing a grey sweater, I see the secretary weaving her way through the carpeted cubicles, looking to intercept me. She had my husband on the phone, she said, he had been trying to reach me and please, she was asking me, would I follow her back to her desk where I could take the call?
I did have time to register the fact that this was not normal. Why would he have me chased down like that at work? I didn’t have the capacity at that time to fully understand how this phone call was to mark the end of our peaceful bliss as a family.
She handed me the phone and he started to choke out some words. He was calling from the pediatrician’s office with our two daughters, Haley (age 5) and Tessa (age 2). He couldn’t talk. He was sobbing. I had not, in almost 10 years of knowing this man, seen him cry. I couldn’t hear what he was saying. I couldn’t make sense of what was going on. He gave up trying to communicate with me, he handed the phone over to the doctor who told me that I was to get myself straight to Yale Children’s Hospital. Our daughter Haley had Leukemia.
One of the small details of that conversation with the doctor remains with me to this day. I asked her “Is this a possibility?” to which she replied, “It is a certainty.” Hope… despair.
There is so much more to this story, days and weeks and months spent living in the hospital. A surgery to place a port in her chest so that chemotherapy could be administered to her tiny little body. Her hair falling out. Sleeping in the hospital bed. Sneaking my toddler in to sleep with us because she couldn’t bear to be separated from her sister. Playing games and doing crafts with the social workers. Learning new jargon: AML, CBC with differential, Graft v. Host, ANC, Neutropenia, Blast count, bone marrow aspiration. Learning to hang our every prayer on blood counts. Reading, re-reading medical trial materials to make decisions for her treatment. Travelling to Boston for a Bone Marrow Transplant. And mostly, being literally brought to my knees, time and time again, begging God to let her stay. Pleading. Telling him, I cannot be here without her.
In September of that same year, she had a successful bone marrow transplant. The team at Dana Farber was making plans for us to take her to the Ronald McDonald house as a transition to going home! There was so much more work to do to keep her healthy, but we were overjoyed that she was cancer-free. Two days before our planned discharge, she was treated with a powerful antibiotic that was relatively new on the scene. She had an allergic reaction to the drug, which has since been banned for use on children. They quickly discontinued the antibiotic, but it was too late for Haley. She simply could not recover.
We had to say goodbye to our beloved daughter, the one who first opened us to joy that knew no bounds, on October 6, 1999.
Of course the age-old expression rings in everyone’s ears “Time heals all wounds.” For me, it would be more accurate to say that “With time, one becomes more proficient at behaving in ways that hide the wounds.”
But time, most importantly, is one thing researchers need to learn more about children’s cancers. Another thing they need is money. In time, there will be more moms and dads and grandparents and siblings getting phone calls that stop their hearts. Right now, someone is getting that phone call. If I could turn back the clock to hold my baby one more time, I would do it and I would re-live through all of the horror just for the sake of being with her for even one minute again. It’s not in my power to do that. The only thing within my power is to offer myself fully to the next family. To pray for their children, their medical teams, and to support the researchers financially so that my prayers are in some way backed-up with a solid action.
My friend, Dr. Katie Baker, is hosting her 2nd annual St. Baldrick’s fundraiser to help conquer kids’ cancers.
The event is at her Pediatric office in Trumbull (the Golf Digest building) on Saturday, April 14 between 2-5pm. I went last year with my family and I couldn’t believe how UPLIFTING the whole event was. There was a spirit of joy and fun in watching the volunteers get their heads shaved in support of their loved-ones! They raised over $44,000 last year!
When you go to this website, http://www.stbaldricks.org/events/bakerpediatrics, and you click on “shavees”, or “teams” I bet you will see somebody you know! Imagine being a kid and having the courage to shave your head? My nephew, Shea Grant is going to be shaved, my friends Chas B, and Allison Yao are taking part too!
From the bottom of my heart, I thank you for taking your precious time to read my story, and for your consideration in donating even a small amount to this fundraiser. The thank you comes from me, and also from the thousands of parents who will certainly benefit from our generosity in years to come.
With boundless love and gratitude, Melissa
