Weekend Update (long overdue!!) Sat/Sun June 27/28

I cannot believe my last post was Memorial Day!  Life has settled into a comfortable routine. Overall I am incredibly blessed to be feeling so good.  My stamina is returning, my color is good, and my weight is up (weird that I would ever say that was a good thing but 4+ months in the hospital, my diet restrictions and the long lingering after affects of the chemo took their toll on my appetite!).  The remaining after effects from the treatment (fatigue, some lingering stomach gymnastics, neuropothy (tingling) in my legs and feet swelling to egg plant size some evenings) are not alarming to my medical team and most likely tied to the medication (still on about 7 meds tied to the leukemia recovery + 3 vitamins) .  The stomach troubles could be mild graft vs. host which can be quite nasty but all my lab work shows my organs are in great shape and my blood work and post-transplant biopsy show no signs of the leukemia's return.  Go new immune system!!

In the past month we had some major milestones - much of them tied to Joseph's senior year.  Joe went to prom with his best friend Megan.  Megan's Mom Karen and I hosted the kids for pictures ar Karen's house - about an hour before the kids were to arrive and just as I was putting a dip in the oven, the power went out.  Thankfully all the girls had finished their makeup and updos - can you imagine??  Graduation followed that Friday and the ceremony was absolutely beautiful (see Joseph and Emma in the photo).  The skies cooperated for the outdoor event and it was a wonderful send off to a great High School career for Joseph.

Emma's school year lingered on until last week but she has managed to cram a lot of living into the week she had between school and her overnight camp.  She had an end of year pool party, a trip to Canobie (local amusement park) plus a couple days in Boston - one day spent on the freedom trail.  We've tried to do the Freedom Trail numerous times but always seem to end up at either Starbucks or Pizzeria Regina (neither of which were visited by the founding fathers).  Her girl scout troop was not so easily distracted and managed to stick with the program.  This morning we dropped Emma off for a two week camp in an Island off Lake Winipisauke in New Hampshire.  She barely remembered to say goodbye which bodes well for how excited she is for camp.

I still visit the clinic frequently for monitoring but have been able to participate in some of the above life moments.   It doesn't take much to tire me out and I am trying to be respectful of my body and minds need for rest as part of the recovery process.  Jim and I were talking last night about how far I've come given the scary starting point with all of this - once again, Thanks to God, all of you, my medical team and amazing family.

The next big milestone is 'day 100' - this is 100 days post transplant - during these first 100 days my risk of complications related to the transplant are at their highest.  In addition most infections happen during the first 100 days when my immune system is at its weakest.  Getting through these 100 days with no serious complications (well there was the fluid in the lungs that sent me to the emergency room but that was treated in short order and my Mom was here to help me through it) and no serious infections is huge.  The official 100th day is July 2nd.

After that I will continue to go into the clinic for monitoring as we need to stay vigilant should longer term complications arise (such as chronic graft vs. host).  There is no magical day when I am considered 'cured' but I sure am doing damn well.  Will keep you posted and will try and be more consistent with the posts!

Thanks for checking in...

With Love
Maureen