Monday, June 20, 2011

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 9th 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.


  1. Praying for you and knowing that you are a strong and beautiful woman who can do this (even thought I don't know you other than reading this blog!). keep strong and remember why you are fighting. Hugs and Prayers to you and your family.

  2. Thank you so much for taking time to update us...I don't know about anyone else, but I've been checking several times a day anxiously awaiting an update. Karin is in my thoughts often. Thank you for sharing your life with strangers like me.

  3. Thank you for posting. Karin has been in my thoughts so much. I am so pulling for her. This HAS to work. I am so sorry she has to go through this. I am so sorry you and your family have to go through this. I am well-acquainted with cancer. My mom died of multiple melanoma at 69, my dad had blader cancer and my husband's dad died of lung, esophogeal and liver cancer at 64. Cancer sucks and my husband and I contribute a couple of hundred dollars every year to Stand Up to Cancer. I crochet afghans which I sell at craft shows to benefit pet rescue. I would love to send Karin an afghan that she and you and Sammy could cuddle up with this winter. Just tell me where to send it, andwhat's Karin's favorite color.

  4. Continuing to keep you in my prayers!

  5. Karin-
    You are definetly my new "awe" person. You are beautiful, smart, funny, strong....the list goes on and on. I hope that all the thoughts and prayers behind you-help to keep you strong. Your a true inspiration...someone I will never forget! Thank you for sharing. It's been so valuable to my life.
    p.s. give a shout out to Saint Raphael...he is the angel of Healing!!

  6. Karin,

    I'm praying for you and your wonderful family.


  7. Craig - thank you for taking the time for the update...soooo many thoughts and prayers being sent your way...Much Love - Karen Jacobs

  8. i've been praying for you guys, great to hear an update - what an immense journey!

  9. Thank you for the update--I too have been looking for them every day--like some kind of crazy stalker who needs to know how my "alter ego" is doing.

    I am still 100% willing to come to Sloan Kettering covered in a smiley faced mask and head to toe in antibacterial gel just to say HI to the other Karin Diamond, who is way braver than I would be!

    just say the word--I am known for being pretty funny and totally irreverent and I am in NYC so it would not be a journey at all.
    Keeping you in my thought, the other Karin Diamond

  10. Craig, Thank you so much for posting this... I cant hardly imagine all you guys are going through now... I just want to let you know that I think about you guys all the time...

    Remember Karin, believe in the power of the cookie... "it is not in your character to give up"

  11. Craig & Kar - thank you for updating everyone on the progress. Kar - We are all rooting for you and sending positive health vibes your way at every moment. Continue to rest up and heal and you'll be back on your feet in no time. We all love you. XOXO.

  12. I am thinking of you and send you my best whishes. Gerður in Iceland.

  13. A sunbeam to warm you,
    A moonbeam to charm you,
    A sheltering angel, so nothing can harm you.
    ~Irish Blessing

    may you rise again, stronger and more radiant than ever. we think of you daily and pray for you every moment. you rock, karin!! keep up the great fight and i hope your symptoms begin to improve quickly.

    Tiffany Mazzeo

  14. Karin, you are such an amazing person with one heck of a support team behind you. What beautiful smiles you all have!! Love the masks. Know that even though you and I don't talk anymore, I think about you nearly every day and send good recovery vibes out to the universe. This will all be worth it soon! Craig, thanks for the update. You are obviously a good match for the CEO of Diamond, Inc!!

  15. Sending positive positive thoughts :-) Tracey London

  16. Much love and prayers to both of you!

  17. Sending prayers your way. Thank you for the update. You are one good man. Sending love to you, and this wonderful, brave little girl-fighting so hard to get her strength and health back. Keeping you all in our hearts. Love Irene

  18. Hi again Karin, my sister in Hodgkin's. It's Pegah again. I just wanted to say: It gets better. I'm not going to say soon... because while you are there in the hospital, it feels like a day is a week long. And there will come a point when you will be thinking up extremely colorful curses for the people who wake you up at 12am, 2am, 4am, and 6am. Food will turn into an obstacle that you must somehow overcome. The hats on the toilet will become your enemies. You will start using the TV to distinguish week days from weekends. You might lash out at your husband, mom, dad, sister, or any person in your room because you don't feel good and they aren't fixing it...

    I know this because I've been there. I got an auto stem cell transplant: went into the hospital on December 5, 2010 and got out January 5, 2011. I just got back home from Houston after my 6 month scans. Still all clear. Thank you God!

    I know I don't need to tell you it was all worth it: every pain, lost hour of sleep, and loss of freedom. Just roll with the punches, my sister in battle. Because the spoils of our war, they are just SO worth it.

    You are in my prayer and thoughts. My mom (who is completely technology illiterate) asks about you every week. Much love and support coming to you from Keller, Texas.

    Pegah Babaei
    6 months cancer free.

  19. Best wishes and many prayers Karin, from Las Vegas..

  20. Oh Karin! Just reading your blog brings back memories of my allo with my sisters stem cells.. seems like all your symptoms and problems are ones I dealt with.. it was 2 years ago, and once you get out of the hospital, it gets SOO much easier. I still have problems with eating things that are spicy because my mouth had so many sores during transplant, but its ok. Im praying for you! Kara Lee

  21. Any more newer news??

  22. Karin God has given us inner abilites to heal. It seems like you have faith in God so in the bible in 3john 1:2 says Beloved, I pray that you may prosper in all things and be in health , just as your soul prospers. Karin medication, drugs, chemo, toxins what whatever they want to call them are poison to the body and cannot heal the body they cause side effects, pain, they need to tell you the truth but then they make no money. i care so i am taking the time to write to you.