Our family has been very busy trying to prepare for Josh’s upcoming transplant! God has been preparing our hearts and the children’s. We praise and thank him for the blessings we see along this bumpy journey.
We had the opportunity to host a team from Germany that ‘happen’ to be doing a tour in the western part of states helping Fanconi Anemia (FA) patients screen for mouth cancers, as FA patients are more susceptible to head, mouth and throat cancers. It was a researcher named Ralf, his assistant named Lisa, and a dental student named Mona. They joined us for dinner and stayed the night at our home. We had the chance to ask them lots of questions. We were also touched by their story of how they ended up doing what they do. Ralf had two young daughters that he sadly lost to FA. They were all very friendly and we enjoyed getting to know them and the different yet similar way of life in Germany. Noah was surprised that they also use cell phones like us! Talking to them really helped us get an idea of what we’re fighting against and what to expect. This disease is brutal and has taken the lives of many in their youth. The man in charge of the team lost his daughter very young after a transplant.
The team took a look at Josh’s mouth and said he looks very good! Praise God! We hope it stays that way even after bone marrow transplant (BMT)! They also looked at his numbers for hemoglobin, blood cells and platelets; and they were concerned about how they are steadily decreasing. It’s good that Josh is having a BMT soon. The biggest concern is that his MDS may quickly turn into Acute Myeloid Leukemia (AML). AML is much more difficult to treat and is deadly. Prayers for Josh’s disease not to progress are much appreciated!!!
We are waiting to hear back from OHSU on Josh’s donor in order to confirm the date for his BMT. Josh’s doctor put in a request that asked his donor to give some of his actual bone marrow and not just stem cells. So we are praying that God would move his heart to say yes! We pray and wait…