This is the heartfelt message that Kristin sent to her friends and family about her decision to transition to hospice care on March 16, 2026.


By now you have heard from either me or Mike that we have decided that I am going to transition to home hospice. I was officially accepted as a patient yesterday. I want to explain more about why and what this means.

As you know, I have a severe immune deficiency that has been worsening since my late teens. I both have neutropenia (not enough bacterial and fungal fighting white blood cells— treated by daily injections of neupogen) and an antibody deficiency (aka IgG subclass deficiency. Treated by weekly infusions of antibodies donated from other people’s plasma). These have caused me to get many infections which have worsened over the years. I am up to around 26-27 hospitalizations in the last 9 years for bad infections, have had numerous surgical procedures (including pulling all my teeth) and have also been on cumulatively years of IV antibiotics as an outpatient. I have now had infections in my brain, lungs, heart, bones, ears, sinuses, other organs, etc. 

It has never been easy but has gotten progressively harder. I had to stop working in 2018 and have had losses with every infection— whether it was my hearing, my teeth, my ability to work, having the energy to do things with the kids etc. 

This year has been particularly hard. I had RSV last Christmas which caused damage to my lungs and put me on months of steroids which caused my weight to skyrocket. I was on IV antibiotics right after for a bad sinus infection. Then over the summer I had an admission for a uterine infection followed by repeated rounds of IV and oral antibiotics because it kept recurring. This fall I had viral meningitis which led to admissions for the infection as well as to treat new issues like confusion, seizures and speech difficulty. I was on three weeks of IV antibiotics again in December for another bad sinus infection and have had many rounds of oral antibiotics as well. On top of this I am experiencing a change in my bone marrow called myelofibrosis— which can be caused by a slow growing cancer or other factors like autoimmune disease. Myelofibrosis  causes your bone marrow to be scarred and have way too many cells in it which is the case on all my recent bone marrow biopsies. We aren’t sure of the origin of my myelofibrosis, but between this and the neupogen, I have extremely bad bone pain and require substantial pain medications around the clock. Today, I am unable to drive and spend most of my time in a recliner or bed. I no longer am having success preventing infections  with medications and insurance has cut off coverage for some of them because of this.

I can feel that my body is shutting down slowly and I feel that regardless of what I choose— comfort care or continuing aggressive treatment— we will have the same outcome. Managing my medical care is a full time job and I’m no longer able to remember to do it all. Given that half of our household is now disabled (with Miles’ autism and developmental issues) it has also been very hard on Mike and our family to manage everything everyone needs.

We have come to the decision that I will be happier and comfortable if we turn our focus to quality of life and good management of my pain, anxiety, nausea and other hard symptoms. Making this decision has given me an enormous amount of mental relief and peace, and has lifted such a weight from me. I have pushed myself very very hard for my children and it has been so hard but worth it, but now is the time to care for them in a different way. To give them time with me, to make memories and to make sure they are held, feel safe and feel as ready as possible for the changes ahead. This is something I also want to give your children and our whole family, to the best of my ability. I am hoping for years of time living a more peaceful life

But it could be shorter. Some people thrive on hospice and I am hoping I will be one of them.

What hospice looks like is that I will be at home and a nurse, social worker, chaplain, doctors and volunteers will visit regularly. They will control my pain at home. They will support all of us (including you if desired) with counseling and memory making activities with me and kids. They will provide equipment like a hospital bed in our living room that will make life physically easier for me. If I travel they will make sure I have everything I need to feel comfortable, even if it means hooking me up with a local hospice company while I am gone. We have a number that we can call 24-7 (kids included, you all included) for support, medical care, counseling or really any support we need.

I know this is a shock to many. It was very hard for me and Mike at first when we started discussing this after Christmas. Whatever you are feeling, it’s reasonable and normal to have reactions to this type of news. It’s a hard thing and I hate to be causing anyone worry, grief or distress. That is one of my greatest concerns in all of this. But I know that this is what I need and our family needs, and it has the potential to be something very safe, reassuring, positive and therapeutic. I ideally will never leave my family again to go to the ER and hospital which will be an amazing relief.

I am working on the best way to keep you all updated as well as my friends but in the meantime do not be afraid to reach out to me. 

I definitely have more things to think about and probably share along the way about updates and plans but this is what I know so far. This isn’t a secret— the kids know and it has actually brought the a lot of peace since we have started openly sharing our feelings and plans— and although it’s hard for everyone you can feel free to share this email or info with anyone who you think should know or can personally support you.

I love every one of our family members— parents, siblings, kids, extended family— and am so blessed to have you all. I believe together we can get through this.

Love,

Kristin