Allo Transplant Day 0 Through Day +4

An update from Craig:

Karin has asked me to write a brief blog to update readers about her progress. I am here in the room with her, but she is too weak to write now and knows that people are concerned and awaiting an update. I will write honestly and openly.

Last Thursday Karin received 11 million stem cells intravenously over the course of an hour that had been collected from her sister the day before. Her family was by her side. Karin did great and glowed while receiving the cells. It was very peaceful and she slept through some of the transplant. Holding the bag of Kristen’s stem cells that will kill the cancer was a surreal and indelible moment.

While we all rejoiced in the milestone of the stem cells being transplanted, the reality is that the most difficult part of the process has just begun. The days since have been a drug-induced blur. A number of related/unrelated side effects have cropped up, making this past week very difficult. She’s currently receiving many antibiotics and many pain meds to combat the discomfort and pain, so it’s difficult to know what has been causing what.

In addition to rebuilding herself on a cellular level, Karin is working hard to overcome:

-an infected and swollen ulcer in the back of her mouth and soft tissue inflammation and infection of her cheek and jaw

-an infected catheter line from the June 9^th surgery where she receives medication and gives blood. The Infectious Disease team and Head and Neck team are carefully monitoring and culturing these sites. They are very swollen and tender. It is likely that the catheter will need to come out tomorrow morning. Another surgical procedure will be necessary to put a new catheter on the other side of her chest.

-bladder urgency, spasms, lack of control, and possible infection. The IV fluids make her urinate nearly every hour, which is very painful. Yesterday she began receiving constant intravenous pain medication and a button that allows her to self-medicate to reduce the pain faster than by calling for a nurse to bring relief.

-fluid retention of 10 pounds

-total loss of appetite

-daily nausea, vomiting, and shaking chills

-extreme fatigue

-a lot of poking and prodding to figure out what is going on

-blood counts near 0. She has received red blood cell transfusions the past 3 days. Yesterday she had a severe allergic reaction to a platelet transfusion. Despite pre-meds, her body became very itchy, covered in hives, itchy throat and coughing, and lots of swelling. She later received a different bag of platelets and with further precautions and monitoring, did not have an adverse reaction.

-beginning of hair loss

-a fever tonight

Other than that, she feels great. Dr. Sauter says that while many of these symptoms are not necessarily common, he is not overly concerned. This kind of thing can happen as a result of the lead-in chemotherapy, from the immunosuppressant medication, or from the temporary absence of an immune system. He thinks that time and antibiotics will heal these problems. Karin has been good at vocalizing her concerns and asking for help as needed.

Karin’s daily highlights include the sunlight coming through her window in the morning, looking at photographs and gifts of original artwork decorating the room, watching/dozing through movies, and crossing off days in red ink on the calendar. Oh, and long visits by me, she adds.

Karin’s blood counts are expected to start coming in at some point early next week. At that point, these infections should start to work themselves out and she’ll slowly regain some strength and appetite. Until then, I hope that she’s able to sleep through as much of these days as possible and keep the pain tolerable.

Karin has appreciated the many messages and prayers and she hopes everyone will understand her inability to respond. Even if you don’t hear back from her or me, please know that your words and encouragement have meant the world to us. Many thanks.