Let’s Play The Waiting Game!

While waiting to hear more about Jeff’s tests, we received a very nice letter from Gift of Life announcing that a swab drive we ran in 2014 recently produced a match for a 62-year-old man with leukemia!  This was exciting news!  We also heard from Barby Pilpel from Gift of Life to let us know she is thinking of us and sending virtual hugs.

We’re getting a lot of virtual hugs and prayers from our friends and family.  They, like us, are ready to hear something.  We’ve heard that Dr. Porter’s office is working on setting up an appointment (double or triple booked because Jeff is supposed to be seen within two weeks of the bone marrow biopsy).  And we saw that results for two tests were posted on the Penn Medicine portal. 

The chimerism test shows that 74% of Jeff’s blood is produced by Nicole’s marrow instead of the 100% that he enjoyed for 9.5 years.  And he is negative for both of the FLT3 mutations for which targeted therapy is available.  Of course, this knowledge leaves us wanting more. 

We attended the Leukemia & Lymphoma Society’s National Virtual Blood Cancer Conference today to get ourselves back in the game – learning about new therapies for blood cancers and new studies on AML.  Jeff fell asleep and missed the discussions on sex during treatment and managing fatigue.  Oh, well.  The sessions were helpful to me.

One screen shared at the conference showed the impact the many new treatments have had on blood cancers and survivorship.  At the bottom of the list were MDS - “minimal impact”, and AML - “no impact”.  Geez.  L&LS is trying to Beat AML so there are many clinical trials going on which do not exclude people with low blood counts as had been the case in the past. Fingers crossed.

The Waiting Game consists of creating questions for which we do not have answers.  Jeff’s questions included:

1. If I have another bone marrow transplant can I make sure that it is done on a different date than my birthday or transplant anniversary so that I can have three birthdays?
2. Can I get chicken pox three times?
3. Since Amy can’t come to the hospital and take my dirty laundry away, do I have to wear only hospital gowns?

Amy’s questions included:

1. Is the new azacitidine tablet approved on September 1^st, an option for Jeff?  (Remember the belly-burning injections of Vidaza?)
2. Can his treatment be done without the use of Daunorubicin (the likely culprit in his kidney issues)?
3. Which will be recommended for Jeff, traditional therapies similar to what he’d had before or might there be a suitable clinical trial?  

Thank you to all who are playing – and praying - The Waiting Game with us. Ain’t it fun?