Connie - Day 21

This week was one of those good news, bad news kind of weeks.

Good news:

• Connie’s cells have started to come up and they are 100% donor cells. 
• Connie’s Mucositis has started to heal.
• Connie has been able to eat a few more bites of soft foods.

Not so good news:

• Connie was moved into the ICU on Wednesday because of heart A-fib episodes and is now back on heart medication.
• Connie has run high fevers on Thursday & Friday, Tylenol does bring it down.
• Connie is on Oxygen.
• Connie still needs nausea medications.
• Connie has small fungus infections in her lungs
• Ron is spending nights at the hospital (as well as the days), neither is getting any restful sleep.

All in all it has been another rough week for Connie.  The news was good and we were encouraged by test results.  There is a light at the end of the tunnel but it seems to be miles away.  So for now Connie is dealing with many of the side effects of having a Bone Marrow transplant while the donor cells slowly produce her new immune system.  It is a slow process that just takes time and there is no way to make it happen any faster that it wants to.  Connie was pretty out of it today, restless when her fever would spike and sleeping when it was down.  Her heart rhythm was better today then yesterday so they seem to have found the correct dosage of heart meds.  We try to keep a positive attitude that each day will be better, not that everything improves each day but we have signs that the process is working and each ‘baby step’ gets Connie closer to her recovery.

Thanks to everyone for keeping Connie and her family in your thoughts & prayers.

Linda (on behalf of Connie & Ron)

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)

Bone Marrow Transplant Journey

I wanted to bring you up to date on Connie’s AML Journey:

Connie was given her transplant cells on Friday evening, March 4^th (day zero). She checked into UW Medical Center and received her donor cells from 6:15pm to 9:45pm.  She had no reaction to the cells and all went well.  She was feeling pretty good and looking forward to finishing her journey to recovery.

To try to explain all the medications Connie has and is taking and the processes Connie has gone through since February 25^th to prepare her body for transplant is unbelievably complicated.  The doctors tell us a Bone Marrow transplant is the most invasive and serious of any transplants a person can receive.  I have no doubt they are correct.

After Connie received her transplanted cells she was adamant that she continue through this process as an “outpatient” for as long as she possibly could.  To tell you Connie hates staying in the hospital is truly an understatement.  So 24 hours after she received her cells they released her from the hospital but warned her she was going to feel much sicker before she would start to get better.

So each day Connie’s husband took her to Seattle Cancer Care Alliance on Lake Union where she would have blood tests, medications, exams, IVs, etc. As side effects came the doctors added medications and hydration to her treatment.  We are so very thankful for the knowledge and experience of her doctors.  We are so blessed to live where we have access to Fred Hutch and UW, all the trials & research they have done the past 30 years have truly given Connie a second chance at life.

Unfortunately the side effects and complications became serious enough that Connie was admitted to the UW Medical center last night, March 11^th. (day 7).  The doctors say she will probably be in the hospital for a minimum of 10 days.  Connie is still not at the turning point where the donor cells will take over and she will start to feel better.  Connie is bone tired, nauseous, dealing with many side effects and a couple of complications and feels really, really lousy.

I know her friends and family wish they could do something to help Connie.  If you are able, please keep donating blood or plasma, without these donations she and many others would not be able to survive.  Connie is not online or up to reading email but if you could mail her ‘get well’ cards to her home address, Ron will take them to her and we will be sure they are taped to her hospital wall for her to see when she is awake.  She needs all the encouragement and prayers available as this is a very rough spot for her to get through.

I will keep you posted with anything new as the days go by.

Thanks again for your support and prayers during Connie’s illness.

Linda

Transplant Tomorrow - March 4th

Just a very short note to let you know Connie has gotten through her pre-transplant process and is scheduled to receive her donor cells tomorrow March 4^th.  She is tired but has not had any complications or many side effects from the ‘Conditioning/Chemo’ that prepares her body to receive the ‘transplant cells’.

Connie will feel pretty yucky for the next 2 weeks as the drugs continue to work through her system.  Hopefully after that time period she will start the uphill climb to recovery as the donor cells take over and give her a new and healthy immune system. 

The doctors tell us “every person is different”, so we take it one day at a time.  We are trusting in the doctors and their knowledge and we are trusting in the Lord to watch over Connie as she goes through this process.

Your continued prayers, love & friendship mean everything to Connie and her family, God Bless you!

Linda (on behalf of Connie)

Connie & Ron with grandson Connor

(picture taken on February 18, 2011)