Finally…THE ANSWER!!
From: “Smith, Dianne” Dianne.Smith@mpls.frb.org
There have been so many puzzling questions since November 1. We were back in the hospital 6 different times for a total of 39 days by January 12. Considering how far out we were from transplant, this seemed unreasonable. Even the ‘doctors’ that were seeing us, in the hospital or in clinic, were perplexed. They just didn’t have a clue what to look at or what kinds of test to perform to get to the bottom of it. They just kept giving Jenny antibiotics until the fever was gone and sent us home again and again.
Here is a list of questions that we either asked the doctors, they asked each other or they asked us: What is causing all of these infections in Jenny’s body? The doctors said that they are “coming from within”!? Why is Jenny’s skin so dry, she’s losing layers of skin constantly, in spite of the greasy creams we are dousing her with? Why doesn’t Jenny’s body make red blood cells or platelets yet? Why is Jenny so nauseous? What doesn’t Jenny’s stomach empty in 4 hours? Why does Jenny’s stomach take 8 and a half hours to empty? Why can’t Jenny eat anything for more than 3 weeks? Why is Jenny getting so weak and so thin?
The answer to all of these questions is: Graft versus Host Disease in the stomach, bowel and skin.
Finally, on January 18, we saw Dr. Stella Davies in clinic. Dr. Davies is an extremely bright doctor, very well-versed in bone marrow transplants. In other words, she’s just the person we need. In spite of the fact that Dr. Davies’ patients are cancer kids, she has taken Jenny’s case. We no longer are “a ship lost at sea!”
Dr. Davies spent less than 10 minutes examining Jenny in clinic on the 18th and she suggested a skin biopsy. Within 24 hours, we had our answer. GVHD is something everyone dreads while recovering from a bone marrow transplant. The only thing worse than getting GVHD; is getting it and not knowing it for 10 weeks. (Apparently, it is quite difficult to diagnose.)
Jenny is back on steroids and cyclosporine for an 8 week regimen. The purpose of these meds is to suppress the donor’s T-cells because they still see Jenny’s organs and cells as foreign. Jenny has been on the meds for 3 weeks now. She’s eating, getting stronger, feeling well most of the time; not so weak and tired all of the time. It has been a complete turnaround in this past 3 weeks. Everyone in clinic tells her how worried they were for her for the past 2 months and also how terrific she looks now. We are all so pleased with her progress.
Jenny does not care to even speak to her original primary doctor. He just dropped the ball too many times and she always suffered for it. It’s good to be beyond those frustrations and loose ends. Hopefully from this point on, things will steadily get better.
We thank God for Dr. Stella Davies and Jenny’s brave, beautiful spirit, dozens of times every day. We are starting to feel re-energized and know that now we can endure this treatment to a successful engraftment and a long, healthy life for Jenny.
Please keep us all in your prayers.
Love,
The Smiths
Steve, Dianne, Jenny and Jason
