Update #5

December 27th, 2017

We are happy to start off this update by saying we are now in the 12^th week of Peritoneal Dialysis and life has really been much more “relatively stable” for Anna. Switching to the daily dialysis has been a much gentler process for her body.  As a result she has had been allowed more freedom in her diet and fluid restrictions, has had better blood pressure (which results in less medication) and overall more stable labs. With the exception of scheduled medical appointments, Anna (and Beth) have returned to school (and work) on a much more consistent schedule.  Anna does have to be connected to the dialysis machine nightly for nine hours and the process of both starting and ending the treatment is extensive.  However, as with most things, it has become somewhat routine in our daily lives.

As things have become more stable, Anna’s nephrology team has begun discussing the possibility of transplant occurring sooner than expected, with March being a realistic time frame. There are MANY factors that still need to be determined before the transplant can actually take place, including monitoring her undiagnosed rheumatological condition--but we are all hopeful about moving in that direction.

Unfortunately these last few weeks have been a bit more rocky – which is especially frustrating as we were all enjoying a bit of a “break” from the challenges of Anna living with such a serious disease.  On December 16^th, Anna was rushed to the ER with severe back and abdominal pain. Tests indicated that she had passed a kidney stone. Luckily she was released after just one day as an in-patient.  And just this week, on Christmas day, Anna spent another day in the ER, eventually being diagnosed with Influenza A.  Although she was released that night, she was back in the ER and admitted the following day for severe hives.

As for Anna on the personal side, she continues to be focused on living the life of a typical Junior – staying involved in her extracurricular activities, spending time with friends, preparing for the ACT, and working hard to maintain her GPA. 

And finally for some fun news. …Anna’s dialysis nurses had referred her to take part in a "Make a Wish" this fall. As part of the process we learned that Make a Wish has been focusing on changing their “image” from granting wishes to children with terminal illness to including those with life threatening diseases.  After months of waiting, Anna found out last week that she will have to opportunity to attend the Grammy’s on January 28^th!  To make things even more “exciting” - this year marks the 60^th anniversary of the Grammy’s and Anna (and the other kids attending this year) equate to the 60th wish that the Grammy’s have granted. The four of us will be spending six days in NYC with many exciting opportunities including red carpet interviews, one on one time with musicians, TV/radio appearances - and other surprises we aren’t privy to yet. Although this is a bit out of Anna’s (and our) comfort zone (as she is not typically comfortable with attention given to her and her illness), it has really been fun to have something unique and special to be making plans for and looking forward to.

The four of us wish everyone a very happy holiday season and of course – health and happiness in the New Year!

Much love,

Beth, Doug, Anna & Sloane