Here’s what’s up:
- Azacitidine and venetaclax have worked! Praise God! And with no crazy side effects!! My latest bone marrow biopsy has shown the cancer to be lower than ever. I’ve started another round to see if we can get to zero cancer cells in the marrow. My next biopsy will be in a couple weeks.
- Thank you for your prayers for a healthy time during my low blood counts. For the first time I didn’t end up in the hospital!!
- The Boston plan has fallen through. They have had to review their protocol on the dual marrow kidney transplant program to exclude people with myeloid cancers after a tragic outcome.
- Next steps are uncertain… I’m in a good window cancer-wise for a bone marrow transplant, but first my oncologist wants me to get a different dialysis access. My femoral catheter is a high infection risk, and a graft or fistula would be much better (especially since I won’t be getting off dialysis any time soon). The fact that they’re willing to do the transplant on dialysis is quite miraculous. They’ve never done one here, so I feel very fortunate they are willing. You may wonder, why not go somewhere that specializes in these? Well… there’s no such place, unfortunately. Hospitals have done a couple as one offs, but no one in the country has done even 15 of these. Unfortunately, what with the current pandemic going on, bone marrow transplants are getting postponed. Dr. Hall reckons I’ve got at best a year before the cancer comes raging back, more resistant to chemo. He’s told me to think long and hard as to whether I even want the transplant. People with my variant of MDS (3;3) don’t have great odds… roughly 1/3 die during transplant, 1/3 die within a few months due to graft versus host disease or lack of engraftment or relapse, and only 1/3 go on to live beyond that. One good year starts to sound pretty appealing.
In other news…
So long dialysis center!!!! We’re starting training to do dialysis at home tomorrow! The timing could not be better. I will no longer have to spend 12 hours a week in a room full of people who’s health is… well… not so hot. Of course, I’m one of those less-than-healthy people, but in these uncertain times it’s best if we don’t all hang out together.
We were fortunate enough to go spend some time with family on the farm! What a great time!! I feel so lucky to be related to these people. They don’t get any better than this.
We’ve now been homeschooling for a week, and I’m surprised to say I’m enjoying it. The kiddos are doing great and staying in good spirits. We’re doing what we can to get some good outdoor time as well, and to continue their tae kwon do with a live stream class, and Awana by sending in videos to their teachers.
Today we also got to go explore around Indian Lake. Despite the mud, it was a wonderful hike. The different personalities in the family really came to light… Mike, Cliff and David walking ahead purposefully and diligently, stopping only to let the rest of us catch up. Liam and I brought up the rear looking at leaves, sticks, rocks, bark, mud, birds, grass and talking off and on along the way. James went from person to person live streaming his every thought.
A big highlight since my last post was a weekend getaway I took with my sisters to a little air b & b outside Chicago. We laughed so much my abs hurt. There was tasty food, art stations with music, poetry writing, interpretive dancing, costume designing… but most of all hilarious commentary at all times.
Even though I don’t pee much what with kidney failure, I do still make use of the bathroom for other fun activities, such as giving Marian her first haircut, bathroom-ballet, and pretending to be a supermodel with my sister.
- That my kidneys would be miraculously healed! The Drs say they’re fried, but I know God could make them new with just a word… or a thought. I long for Him to be willing!
- That I could get a transplant soon, and not die.
Thank you SO much for following along and being willing to pray, even if it’s just once as you read through the list… God answered my previous posted prayer requests with a “yes” to it all! I’m indebted to you all. I do have one final request to make of all you healthy people. With covid-19 spreading about, blood drives are being canceled and there is now a blood shortage across the US. Would you be willing to go to the Red Cross and donate blood or plasma? Sadly, though the supply is going down, the demand is ever present… I especially like the taste of A+.