MDS to AML moving fast

[DebS]

Susan,

Doug's brother is his donor. He is a 10/10 match! We are so blessed and grateful about that. He is going through his tests next week at Loyola also.

I feel like I am going on fumes right now. But I know I have to stay strong for everyone!

Best of luck to you. There are so many people on here praying for all of us. I feel like I have to go to bed an hour early just to get everyone in!

Deb

[Susan L]

Hi - I forgot about the match - that is totally fantastic - hope all goes well and lets all get a nice weekend in and do this all again next week. Happy dreams - Susan

[DebS]

Well, we went to Loyola for two days of testing. Barring nothing unusual on the tests, we are headed to transplant!

We will start Day -8 on Sept. 30 and then Day 0 is October 8. We knew this was all coming, but were in a bit ( a lot?) of denial for some time. But I think we have come to our senses and see this is the best and only way to go.

We are in an area where we have lots of friends and family support. That is, of course, huge! People have offered to help and very uncharacteristically of myself, I have accepted. I have passed out jobs to people already. I have never delegated very well, but I am learning!

Doug is doing well. He is transfusion dependent, so that is a pain. But after he gets blood, he feels so much better. During his tests yesterday, every doctor commented on what good shape he is in except for the MDS. His color is usually good, and if you were to look at him, you would not think anything is wrong. That is hard for our friends who sometimes "forget." He is exercising, which is a good thing! Loyola are sticklers about exercise. They are insisting that he get 60 minutes of walking in every day regardless of how he feels. These can be broken up into sections of 20-30 minutes. But the 60 minutes is non-negotiable!!! He is to walk 3 miles a day before he is admitted. We are all for that. We have always exercised and believe that it is important. I am concerned about the strict rule when he is not feeling well, but we will get through it.

Another real shocker to us was that he is basically not supposed to go anywhere for the 100 days! At Moffitt they told us he could go to a restaurant if he brought his own drink, utensils, etc. But at Loyola that is no dice! They are very strict, but then again they have very good results. So once again we are happy to go along with whatever. We are not sure, however, that 80 days in the hotel room might not kill us both They did say that he could go for car rides and walk outside wearing a mask, etc. So it won't be exactly solitary confinement--but it comes close!

Thank you as always for the well wishes. I will try and report our journey as much as I can.

Deb