Weekend Update July 22

Happy Birthday Johnnie Redmond!!

Family Fun  Emma wraps up rowing today (weather cooperating with no lighting) and leaves for a two week YMCA overnight camp tomorrow.  She went last year and had an absolute blast.  Some of her close buds are going and she is also looking forward to meeting people who come from all over the world.  Joe continues to work 6 days a week but is still able to sneak in some beach time and lots of friend time.  Along with Jim the kids and I have had a blast watching and tearing apart Americas Got Talent (not to mention the Republican National Convention :)

Health Update The last few months have been particularly challenging.  But as I constantly remind myself every day is a gift.  Here is a quick synopsis...

Disease Status  My leukemia recurred again a couple months ago. Since then I've been really struggling.  Two months ago the % of leukemia in my white blood cells was as high as 70%.  Yesterday's labs revealed there is currently no leukemia in my blood.  Now this lack of leukemia in my blood stream is a moment in time and could change at any time.  However for me to have 0% leukemia in my blood is nothing short of a miracle.  

Infections/Bacteria.  Over the last couple months I've had two pretty bad infections that required hospitalization. Fortunately the infections have been successfully treated with antibiotics and at this point are no longer active. If the infections come back I could be in big trouble.  Every couple of days cultures are taken of my blood to see if the bacteria grows into an infection in a petri dish - since starting the antibiotics the bacteria has not grown back into infections.   

Physical Strength  Currently my heart is not functioning at full tilt (due to the chemo), I am dehydrated and weak from deconditioning.  My heart races when I stand/walk resulting in my being able to walk short distances around the hospital or home (wherever I happen to be).  I am only going to the clinic in terms of outings and using a wheelchair to get around.  Fortunately I am literally getting better every day - for example today I am walking about double the distance as yesterday without needing to sit down. Also my  appetite is much improved

Prognosis and Next Steps:  I will most likely be getting chemo again next week to try and keep the leukemia out of my bloodstream.  Once we see how I am doing we will determine if I continue to get chemo every 6 weeks or so, enter a clinical trial, look at another transplant or something else.  All of these treatment options have pros/cons and, at Dr Avigan's suggestion, we are waiting until after the chemo treatment to see what our best course of treatment is and have a deeper discussion of the pros and cons of each option.  

One day at a time and today/yesterday is a very good day!

Thanks for checking in

Love Maureen