- One of you approached Amy and I at Ellie's soccer game and blew our minds by telling us you had not only been seeking answers for us in your professional capacity, but that you had made progress and had a new team of experts interested in our case. We are excited to engage them!
- Another of you just found out about our Project this week when seeing me in one of my limpy-er moments at church. You shared by email your faith, hope, encouragement, and the details of a medical option you have had results with. We are looking into it!
These interactions and others like them allowed us to better handle the challenges of the week: Our application for insurance coverage of IVIG treatment (see our 12/16 entry) was denied this week--we are appealing the decision. We also placed a call to Israel to receive a status update on their trial's pending government approval (see our 12/15 entry). We were surprised to hear that approval had been granted last week, and that the final spots in the study had immediately been filled--we continue to research options for receiving this treatment outside of the trial.
(Amy speaking now)
It really does feel like a roller coaster sometimes. When you are at the top of the coaster after climbing a big hill, you feel like your going to make it, and with a smile on your face your ready for what is ahead. But when the bottom drops out from under you or you turn a sharp corner you weren't expecting, the coaster ride seems a bit extreme.
I was sad last night after hearing the final spots in the Israel stem cell trial had been filled. It had taken me a long time to decide I had the courage to take my little family to this foreign land of unrest. But I was on board. This past Sunday our family, including Sam and Ellie, our extended family, and friends, offered a fast for guidance to our next path for the project, knowing we had many important decisions pending. Seth receive a blessing that offered us hope that things would work out. And so the next two days of denial were difficult. BUT- I do believe that things will work out. And I even have an example. For example, a year and half ago Seth was first in line to for a drug trial for ALS (the drug was called Dexpramipexole). The trial started on the east coast of U.S. and by the time it hit the west the drug supply was gone. We got a call two days before the trial was suppose to start saying that it was cancelled at UW. We quickly called the U of U, who was also apart of the trial and they quickly added us to their trial, only to receive a call the next day that it also was cancelled. Again, we were sad. But two days ago, the results of the Dexpramipexole trial was release and there was no benefits to the drug and it was being pulled from the market. To me this information came right at the right time. The after our many attempts to be apart of this drug trial, and then we were told no. Not once, but twice. We came to terms that this was NOT the right direction for us. Now a year and a half later, we have been told no again. And as we learned from the Israelies, no doesn't really mean no, it just means you have to find another way. So here we go. Finding another way. The right way. And in the end, we will see. Right? Right. Love you all.
(Amy speaking now)
It really does feel like a roller coaster sometimes. When you are at the top of the coaster after climbing a big hill, you feel like your going to make it, and with a smile on your face your ready for what is ahead. But when the bottom drops out from under you or you turn a sharp corner you weren't expecting, the coaster ride seems a bit extreme.
I was sad last night after hearing the final spots in the Israel stem cell trial had been filled. It had taken me a long time to decide I had the courage to take my little family to this foreign land of unrest. But I was on board. This past Sunday our family, including Sam and Ellie, our extended family, and friends, offered a fast for guidance to our next path for the project, knowing we had many important decisions pending. Seth receive a blessing that offered us hope that things would work out. And so the next two days of denial were difficult. BUT- I do believe that things will work out. And I even have an example. For example, a year and half ago Seth was first in line to for a drug trial for ALS (the drug was called Dexpramipexole). The trial started on the east coast of U.S. and by the time it hit the west the drug supply was gone. We got a call two days before the trial was suppose to start saying that it was cancelled at UW. We quickly called the U of U, who was also apart of the trial and they quickly added us to their trial, only to receive a call the next day that it also was cancelled. Again, we were sad. But two days ago, the results of the Dexpramipexole trial was release and there was no benefits to the drug and it was being pulled from the market. To me this information came right at the right time. The after our many attempts to be apart of this drug trial, and then we were told no. Not once, but twice. We came to terms that this was NOT the right direction for us. Now a year and a half later, we have been told no again. And as we learned from the Israelies, no doesn't really mean no, it just means you have to find another way. So here we go. Finding another way. The right way. And in the end, we will see. Right? Right. Love you all.
It's so great to hear an update, even if it is ups and downs. Hang in there, you guys are awesome! xoxo
ReplyDeleteThank you for bringing me up to speed with the journey... Love you so much, Nancy
ReplyDelete