My two youngest sons are getting married this summer. Thomas is marrying Katie on July 28 in the LDS Draper temple and Chris is marrying Lexi in the Sacramento LDS temple on September 1st. It’s a wonderful time for our family and a mother’s dream come true.
But then Gracie got sick. She’s my daughter’s oldest daughter and is just two and a half. It was nothing short of a miracle that Dr. Mohammed was able to diagnose HLH so early. It’s rare and often fatal, but treatable with steriods and Chemo Therapy.
The first big question her doctors must answer is how did she get it. If it was an overreaction to an infection, she should do well with standard chemo and steriods and powerful antibiotics.
But if it’s genetic, it can happen without any infectious stimulous. And HLH will flare over and over until she either gets a bone marrow transplant or dies. But bone marrow transplants have only a 63% survival expectancy.
For now, she started out responding well. The doctors soon backed down her steriods and tried doing chemo just once a week instead of twice.
But she had another flair with her temperature soaring even with the steroids. The macrophages in her blood that are supposed to fight bacteria or viruses turn against her and begin devouring healthy cells.
We won’t know for 5 more weeks whether it’s genetic or not. In the meantime, I’m begging and pleading with anyone and everyone to register for matching bone marrow on bethematch.org.
If you’re under age 44 or younger, they send you a kit and you swab the inside of your cheek and send it back in the provided vial. You have only about a .25 chance of matching with someone, but if you do, I understand that it’s similar to donating blood. It’s not taken surgically.
For now, she’s getting blood transfusions between chemo treatments. So if you’d like to donate blood in her honor, that would be a kind and generous gesture also.
Here’s the link https://bethematch.org You may have to cut and paste it.
Please, please share this post on your social media if you haven’t already, and thank you from the bottom of my heart to all of you who have been so generous and concerned!
The purple and green on her hand is marker she colored on her hand over the place where her IV had been before she had her PICC line. The PICC line is in her arm and takes meds to a large vein near her heart so that the strong Chemo drugs don’t burn out an IV vein, and so they can easily draw blood for myriad tests each day.