Monthly Archive: January 2017

standard

Joy

3.01.2017 Posted in Uncategorized 3 Comments

This post is a few days overdue thanks to a wide spread nasty stomach virus (that started with Lucy!) and some sad news, but the Lucy news is all GOOD! In fact, the news is great. With every blood draw and bone marrow biopsy comes some anxiety, and this one was big.  Dr. M’s words have echoed in my head for months “I’ll feel good about the leukemia after she makes one year”. We are thrilled to report that Lucy’s bone marrow is free and clear of disease and is 100% donor cells! Thank you God! The other one year post transplant tests results were also good. Lucy visited the opthalmologist for the first time (Dr. B said this is due to the radiation she received) and her eyes are healthy, no glasses neccessary! Her EKG and echiocardiogram were also completely normal. Some of the chemotherapy drugs Lucy received over the past three years are known to cause heart damage in the long term, so she will likely repeat these tests annually for some time. Dr. M thinks Lucy’s risk is low, which is always good to hear. One full year, officially in remission feels really good; we continue to pray she is cured.

Lucy felt a little crummy during our Christmas festivities, which was sort of a flashback to last year, but we were still so joyful and overwhelmingly grateful to be all together, not in a hospital, this Christmas. We are very sorry to the nine family members Lucy took down with her stomach bug, but it is kind of a sweet testament to how much she loves to play with her uncles/aunts and vice versa! Right guys? Is it sweet/funny yet?

  
Lucy did not like the drops to dilate her eyes, but she loved these shades. She left them on all day. 

   
Cool as a cucumber during her EKG and Echo

  Were calling this “the stomach flu of 2016″. Here lies patient zero, recovering.

   The girls were feeling better in no time, had a blast playing together with new toys all week. 
 Happy New Year!! (It’s sparkling apple juice, which Lucy hated)

Our sad news is that our sweet little friend Mariel passed away on Friday, 12/30 after a two year battle against an aggressive, relentless leukemia. She was four years old. Her parents fought tirelessly to give her the absolute best treatment and she endured every treatment option available, many experimental. Her story is the saddest part of medical advancement. Thanks to her brave parents, I’m certain her journey/experiences will mean lives saved in the future but it doesn’t make her loss of life any less devastating. In the words of her mother “Our baby’s suffering came to an end at 11:55 am today. She was in our arms until the end.” They shared this beautiful photo of Mariel, such joy on her sweet face. Our prayers are with her parents, Vincent and Meredith and little sister Scarlett.