Connie - Day 14

First I want to thank all of you that have sent cards to Connie this week it has helped her so much.  The words of encouragement and to know people are thinking of her really helped her get through a really rough time, please keep them coming.  We have taped them to her wall at the foot of her bed and I caught her gazing at them yesterday and know they brought her comfort.

Yesterday was day 14 for Connie, two weeks since she received her donor cells.  The doctors had told her she would get worse during these two weeks (day zero – 14) before the transplant would graft and she would begin to recover.  It is hard for me to even find words to describe Connie’s last week.  To say she was horribly, miserably sick is such an understatement.  The doctors and nurses have taken good care of her and done all they could to make her comfortable but it takes the body to do the healing and it all takes time.  The doctors have done an amazing balancing act with treatment and medications, so many medications have side effects that they have to balance the doses lower or higher according to her daily test results and her monitored vital signs through out the day and night.

A common side effect of the Bone Marrow Transplant process is what they call Mucositis.  It is described as;

The injury of the mucosal lining of the mouth and throat and is a common regimen-related toxicity following ablative HSCT regimens. It is usually not life-threatening but is very painful, and prevents eating and drinking. Mucositis is treated with pain medications plus intravenous infusions to prevent dehydration and malnutrition.

  

Unfortunately Connie has had a very sever case of Mucositis, her face and neck are very swollen.  Connie describes it as “looking lie a Chipmunk, that has the mumps, that had there 4 wisdom teeth pulled”. (as you can tell she still has her sense of humor)  Her mouth is so swollen she is not able to close her lips that have become raw and painful as well as everything inside of her mouth and throat.  Yesterday was the first time she was able to swallow without chocking; she managed 1 bit of jello and 4 bites of a Frapachino.  She has been on IV feedings, antibiotics and pain medication.  A few days ago they moved her from morphine to something stronger, I did not even know they had anything stronger, but it helps the pain be manageable.  Of course part of the treatment to help the healing process, is for Connie to swish and gargle many times a day with a baking soda, saline solution.  Thank goodness for the pain meds.  Of course all this has made it very difficult for Connie to talk and hard to understand when she tries, as you can imagine this frustrates Connie. 

 

So the doctors say ‘most of the transplant patient’s’ cell counts start coming up between day 15 – 21.  Today is day 15 and I am praying it will be soon.  Once her counts start to come up she should feel better and her Mucositis should heal.  So to me, that means, this should be as bad as it gets and the turning point is near.

Connie commented on her view from her hospital room, it overlooks the canal that runs behind Husky stadium.  She enjoys seeing the rowing teams go by, boats out for a cruise and people walking along the path by the water.  She is looking forward to all the little things she wants to do this summer, all those things we take for granted in everyday life.

Thank you all for your kindness and caring for Connie.  Each of you help her get through each day with her amazing strength and courage.  God Bless you all.

Linda (on behalf of Connie & Ron)