Update #3

August 9th, 2017

Anna update #3

All,

We wanted to circle back and check in since our last update in March. Life has definitely been more stable and routine for Anna since then. Once school was out, Anna began a regular schedule of dialysis Monday/Wednesday/Friday. She is working with homebound tutors to complete coursework, found a part-time job working after care of a day camp, and is “working” hard to complete an enormous summer “bucket list” of activities.  But by far the highlight of her summer was working for a week in Lake Geneva, Wisconsin as a counselor for kids with special needs. She continues to demonstrate strength and perseverance with a truly dedicated goal of living the life of a typical kid.

With that said, Anna continues to be faced with many challenges. We are all living life on a day by day (or some days hour by hour) basis in terms of addressing the various curveballs thrown at her. Some are related to a weakened immune system, some to being in kidney failure and the dialysis process, and many due to the side affects of the multiple medications she is on. 

Although Anna’s rheumatologic condition continues to lack a concrete pattern or diagnosis, we have begun the kidney transplant process.  Technically Anna would be considered “ineligible” at this point – but the process is long and complicated so we have begun the initial steps.

The process includes both being listed on the United Network for Organ Sharing (UNOS) as well as pursuing a living donor. Neither Doug nor I share the same blood type as Anna (she is B+), so unfortunately we are not candidates. This summer has included frequent trips to the hospital to meet with a variety of specialists as we further pursue this option for her- hopefully- in the not so distant future.

Many thanks for the continued support our friends and family continue to provide – it is so very much appreciated by us all - Beth, Doug, Anna & Sloane