Karen Boudreaux - Photo Album
My daughter Lucy was diagnosed with pre-B Acute Lymphoblastic Leukemia (ALL) 9/4/12, 3 weeks before her 2nd birthday (the first day she’d get released from the hospital since diagnosis.
She was very sick when diagnosed and needed multiple blood and platelet transfusions. We were taken up to the PICU and the next morning she was put in a coma for 6 days. After the heavy treatments during her first month of Induction and the time in the hospital, she lost most of her mobility. She went through months of Physical Therapy starting with learning to sit up and roll over again, and eventually taking her “first steps” for a second time. She couldn’t go to daycare for almost a year, and then often missed for weeks at a time for another year if her blood counts were too low for her to be exposed to any potential other diseases while her body couldn’t find anything off. Every time she got a fever of 100.4 (not terribly uncommon for kids) we’d have to stay in the hospital for at least 48 hours. I was still working at the time and My husband was just a couple years in to getting his small business off the ground. We were exhausted but survived because we knew we had no other option. Beyond the original diagnosis, she had a life-threatening response to one of her chemos that put us back in the PICU a second time. It was horrible. She was also tested a separate time to rule out an uncurable secondary cancer the chemo can cause, but luckily, she was clear. It’s hard to share 26 months of treatment in a limited space, but we had tracked her treatment for her Beads of Courage program which gives kids with life-threatening illnesses beads to track all they’ve been through so that they can have a physical representation of how far they’ve come. Here are some of those statistics from our totals when she finished treatment. All in all, she was in treatment 793 days, had 419 days of taking at least one chemo, 193 days of isolation or neutropenia, we had 11 hospital stays (2 in PICU) and 52 nights in the hospital (8 in PICU). She had 18 spinal taps, 17 trips to the ER, 6 bone marrow biopsies, and 38 blood product (blood, platelets, IVIG) infusions.
We share her story openly, not to bring anyone down but to show how far Lucy has come. If you meet her now, she is a happy and healthy girl who you would never know was ever sick. There have been HUGE improvements in treatment because of groups like Hope on Wheels and their dedication to fund safer treatments and ideally one day a cure. We are well aware of the the advances made in the past couple decades. Her diagnosis would have been a guaranteed death sentence. With the advances that have been made and research done, Lucy was given 92% odds of survival for diagnosis at her age. We still worry about potential long-term effects or secondary cancers, and we worry about the other kids we met in treatment or any future kids who will get diagnosed. We hope better and safer treatments will be discovered soon. Programs like Hyndai Hope on Wheels, and all who support them, are greatly appreciated by my family and certainly all those touched by these horrible illnesses.