Bonnie Recovery

Bonnie is in the Hospital again

Bonnie is in the New Hanover Regional Hospital, diagnosed with Graft vs. Host Disease.  Bonnie was unable to hold down any food, even Ensure, for the last 5 days.  On Saturday Bonnie developed a rash on her legs, tummy, chest and back, and a fever.  She has been suffering with diarrhea for ten days.  These symptoms are consistent with the GvHD diagnosis. 

Bonnie is scheduled to be transferred to University of North Carolina Chapel Hill Hospital, a Bone Marrow Transplant center, tomorrow for some biopsies to confirm the GvHD diagnosis and to get appropriate treatment.

Bonnie continues to be her Bonnie self.  She saw her grandson's Zac and Luc tonight and her daughter Jennifer.  Zac got her a Valentines card and a white fuzzy teddy bear that sat on Bonnie's lap for most of the night.  We will survive.

/Daniel for BanD.

Progress - UNC Chapel Hill Hosptial

Bonnie is making progress at University of North Carolina at Chapel Hill Hospital.

She is getting intravenous fluids and steroids which are making her more comfortable.  She is undergoing all of the tests the doctors can conceive: blood cultures, a skin biopsy, chest x-rays, electrocardiograms, ultra-sound exams of her stomach and intestines. 

Friday she will have an endoscopy and colonoscopy and biopsies of her intestines and stomach.  In the meantime she is more herself with the addition of fluids.

We will know if Bonnie has Graft versus Host Disease in a few days.  In any case, we are pretty confident that it will all work out.   

/Daniel for BanD

Kidneys again?

Bons apparently is not passing water.  I am off to the hospital to see about her blood chemistry and kidney function.  We have been through this before so we can do it again if we must.  /D  for BanD

Birthday Present

I ran into Bonnie's doctor as I was entering the hospital.  He told me that the skin biopsy done on Thursday suggests that Bonnie has a "grade III Graft vs. Host Disease".  He speculated that she would pass urine later in the day as an ultrasound showed that she had about 180cc in her bladder.   

Bonnie and I went for a walk around the floor to see if we could "encourage" her to produce some urine.  No such luck.

I went out and got Bonnie a couple of violet pillow cases and new halogen incandescent light to make Bonnie's hospital room feel a little more like home.

Today was my birthday.  Bonnie and I enjoyed a delicious dinner of Vietnamese Chicken Pho Soup by a low incandescent light. The basil, lime and cilantro flavors stimulated Bonnie's appetite and the soup did it's magic:  Bonnie produced 250cc of beautiful urine.  I think it was the best birthday present I have ever recevied.   

Since Bonnie is over 60 and received a slightly mismatched transplant the chances were between 60 - 80% that she would develop Graft vs. Host Disease.  We shall see how effective the drug trial Bonnie is participating in is at dealing with her GvHD.  In any event, we have faced more dire conditions and longer odds before. 

Thank you for your prayers.

/Daniel for BanD

Severe Graft vs. Host Disease

It appears that Bonnie has Grade III or "severe" Graft vs. Host Disease.  Her rash remains active and on most of her body, her gut is getting a bit better in that she can hold down tea and soup and tiny bits of desserts.  Her eyes are swollen.  She is being Bonnie and we are going for walks.  She is getting a couple of units of red blood now.   

The studies I read are that about 50% of people who get chronic graft vs host disease go into long term remissions with proper treatments and only 30% die of it.  We are in the most promising drug trial and being treated by leaders in the field of GvHD.   Our "odds" today are much, much better than we have faced in 4.5 years.  God will see us through.  Your prayers are most welcome.

I am off to see Bonnie at University of North Carolina at Chapel Hill Hospital now.

The good news is that Bonnie has a high speed wireless connection in her room.

Gee, you would think places like Stanford or Harvard / Dana Farber would have led the technological enabling of patients, but it is in fact UNC CH which is the first hospital to enable patients to stay connected to their friends and family via e-mail and the internet.

Do feel free to send Bonnie your news and views and pictures of your kids, grandkids, dogs, cats and/or latest remodeling projects.  Bonnie loves to hear from you. 

Let's move the conversation away from the worn-out groove of "how are you feeling" etc. as we are both much more interested in what is new and cool with you.  We are bored to tears with our "news" - except things like Zachary reading and Jennifer having her sonogram on Friday on our soon to be with us "Abagail" Jean Pollard.  Bonnie and I still call Abagail, by our "project name" for her which is Grace.

We are so looking forward to May and the arrival of our fourth grandchild.  Unless you present photographic evidence to the contrary, we are going to claim that we have the best looking and smartest kids and grandkids in the Western World.

We will have some more good news to share in the next post. 

/Daniel  for BanD

Bonnie's GvHD relenting a bit

Bonnie is doing a bit better as the drugs and iv fluids are beginning to deal with her skin rash, stomach and intestinal issues.

Bonnie was so dehydrated that she has "gained" 20 lbs over four days.  It appears that the swelling in Bonnie's eyes was caused by an allergic reaction to one of the heavy duty drugs she is receiving.  By the time I left tonight the swelling in her eyes and face was almost completely gone.  Bonnie feels a bit better.  She is collaborating really well with her nurses.  They say she is one of the best patients they have cared for. 

Tomorrow I am going to the hospital early to get the results of Bonnie's biopsies and a briefing from her GvHD doctor.  We are unclear about the regime going forward and Bonnie prognosis.  In any case, we hope to have Bonnie out of the hospital by the end of the week. 

/Daniel for BanD

Feelig better now

These days are sunny in Chapel Hill.  I'm eating and drinking now/  Mostly I'm feeling life in my body again.  I got some 2 pound hand weights to use in bed

Danniel has written about most of what is happened  I'm  writing to say that I am ok and enjoying life.  (I even had some chocolate today!)

love to you, B

Out of the woods - but still in the hospital

Bonnie is probably out of the woods in terms of this episode of Chronic Graft vs. Host disease, though she is still in the hospital dealing with the remaining symptoms (liver function, skin rash, diarrhea - nausea, high blood sugar, low platelets) and getting healthy enough to travel home and take care of her self. 

By the end of the week we should know the proper course of treatment, nutrition, exercise and complimentary medicine practices to help Bonnie recover her life as fully as humanly possible.   

Where we had once had hoped we would be completely out of the woods and on to a normal life 200 days after Bonnie's Bone Marrow Transplant - now - with the advent of her episode of Severe Chronic Graft vs. Host Disease we are probably facing another 1.5 - 2 years of precautions on food, and the need for very clean environments, limited human contact and travel etc.

Bonnie continues to be amazing in her patience while being stuck into yet another hospital for two weeks. She is attached to an infusion pole with THREE pumps pushing saline solutions with anti-biotics, anti-fungals, and cortisone, and liquid food and insulin and benydrl.  The infusion pumps are working 24/7. 

Bonnie gained 25 lbs. in 4 days (fluids) and then lost 20 lbs in 3 days as they got her drugs and fluids adjusted.  She just went with the "flow".  Bonnie has to wear a mask when she goes off for MRI scans and colonoscopies and endoscopies or just to walk down the hall for exercise.  She has to drag a 50 lb. machine to the bath room, with a nasty case of diarrhea that has hung around for 6 weeks and nausea that has been around for 3 months or more. 

We love to sit and chat and look at photos of our grandkids and create plans for the future.  But of late I am simply flat.  I am tired.  "Living" for two weeks in a motel and hanging out in a hospital watching my sweet Bonnie struggle with the side effects of her Bone Marrow Transplant is wearing on the soul.

Please do pray for our Bonnie to recover fully and quickly and to have the strength to finish this marathon to disease free survival. 

/Daniel  for BanD

Bonnie being transferred to BWH in Boston tomorow

Bonnie is being transferred to Brigham and Womens Hospital in Boston.  We have gotten excellent care at UNC Chapel Hill hospital but they were talking about having Bonnie stay another two weeks as she can not always hold down her pills. 

Bonnie wants to see if we can continue to be on the anti-Graft vs. Host Drug trial at Dana Farber and she asked if she could go "home".  The doctor here and at Dana Farber and the social worker here arranged the transfer home via Medivac airplane tomorrow and so she will be back in Boston at BWH for Ash Wednesday.

Bonnie says "This is not how I planned to spend Ash Wednesday... but that is how it is.  I enjoyed seeing Lollie Lloyd, who lives in Chapel Hill now.  And I appreciated the visit from Susan Langle and BK Hipsher who drove from Boston to see me yesterday."

"I send my love and thanks to all who are keeping me in their thoughts and prayers"

B dictates to D for BanD

We apologize for not posting recently

We apologize for not posting for awhile.  We have been preoccupied and apart for the last week.  Bonnie was moved by a Medivac jet last Wednesday from the Hospital at the University of North Carolina at Chapel Hill, back to Boston's Brigham and Women's Hospital.  I had to go back to Oak Island to close up the beach house, and to pack out 5 suitcases of computers and clothes and to fetch Bonnie's walker.  While I was there I arranged to have the beach house made wheelchair accessible and to get it replumbed and completely repainted inside before the rental season starts this spring.

In order to beat the snow and make SURE I was back to get Bonnie out of Brigham and Women's Hospital, I flew back from North Carolina yesterday.  I had to leave our Odyssey in long term parking at the Myrtle Beach SC airport.