Bonnie Recovery

Hospital AGAIN with a flare up of her Graft vs. Host Disease

Bonnie is back in the hospital again with a "flare up" of her Graft vs. Host Disease.  Dana Farber Cancer Institutes Pathologists reviewed the slides of the biopsies of Bonnie's colon, stomach and skin done at UNC-CH hospital 4 weeks ago and confirmed their diagnosis of "Stage 4 / Life Threatening GvHD" 

The doctors are splitting hairs over whether this is a case of "late acute" or "chronic" GvHD.  I am not sure what practical difference this makes;  In either case Bonnie's diarrhea was so severe she got dangerously low on Potassium and Calcium, which are vital to her neurotransmitters and heart function.  She also needed two units of red blood and medications to keep her from throwing up  Ensure and even clear water. 

Bonnie home again, though she can barely walk.

The good news is that Bonnie is home in our Cambridge MA apartment.  The bad news is that her legs muscles have atrophied so badly she can barely walk and she could not get up two small steps to the front of our house.  She collapsed on the second step.  I had to literally lift her entire body weight up the second step. 

Bonnie is of good spirits.  Dr. Stone came to her room today to look in on her.  He told her that her blood numbers were very good and that she was successfully beating the Leukemia.  And that her Graft vs. Host Disease was par for the course.  Everyone with a Bone Marrow Transplant got some flavor of this disease.  Some lighter than others, but everyone gets it.

Bonnie on the upswing again.

Hurray, Bonnie is on the upswing again. 

I Bonnie's physical therapist, Annie, that Bonnie seemed much stronger.  Annie smiled.  Later she told us she thought "Now, how much stronger can Bonnie have gotten in two days?"

After working with Bonnie on pushing up, hand over hand, to sit up in the bed on her own,  and working to swing her legs down and getting ready to be helped out of bed, Annie told us that she was amazed at how much strength and mobility Bonnie had gained in two days. 

200 Days after Bonnie's Bone Marrow Transplant

Today is the 200th day since Bonnie's Bone Marrow Transplant.  It is a major milestone and a good time to take stock and to give thanks.

We have been at the challenge to recover from Myelodysplasia Syndrome and Acute Myelogenous Leukemia - with less than a 20 percent chance to survive one year - for over four and a half years now. 

Bonnie was fortunate find a one in ten million "close enough" match for her very unusual tissue type for a Bone Marrow Transplant and to survive two rounds of intensive "induction" chemotherapy.  After four years and four rounds of chemotherapy that basically failed, Bonnie barely qualified for a Bone Marrow Transplant - which was given as a last hope therapy.  Bonnie was given about a 15 percent chance of engrafting due to the amount of Leukemic cells still in her bone marrow, her age and the slight mismatch of tissue type with her BMT donor.   In the end, Bonnie successfully engrafted.

We were supposed to be out of the woods 200 days after her Bone Marrow Transplant.  Yet, we are still deep in the woods of twice weekly clinic visits and monthly or twice month hospital admissions - and endless infusions and transfusions.  Truth told, Bonnie continues to have life-threatening conditions going on with her biology.

R rated report - mature content

This is an R rated report - mature content. 

This has been a hard week for Bonnie.  She has had to go to the Dana Farber Cancer Institute clinic several times for blood draws, doctors exams, and infusions of more and different drugs and electrolytes.

She has had diarrhea and increasing difficulty walking.  We have to go the bathroom together at all times of the nights.  It looks like we are doing a bunny walk as I hold her up in front of me to walk.  I sing "You put your left foot in and you left foot out, and you do the hokey pokey, that is what it is all about" while keeping Bonnie upright and headed in the right direction. 

Sometimes we do not making it to the bathroom in time as the drugs give Bonnie runny stool.   We have maintained a good sense of humor about our midnight express runs, and that I have to clean up when we are too slow. 

Bonnie Enlists in "Baby Bootcamp"

Bonnie has enlisted in the toughest boot camp in the region.  It is designed to provide physical therapy to make patients physically fit through custom-tailored exercises and strength training and occupational therapy.

Bonnie lost her ability to walk on her own due swelling in her ankles after her Tuesday Gamma gobulin infusion, which was designed to prevent some other issues with her blood.  This, coupled with her thighs having atrophed due to disuse and the effects of Prednisone, Bonnie was going backwards on the mobility scale pretty quickly.

Pneumonia drives Bonnie to ICU at BWH

Bonnie awakened this morning at Youville Rehabilitation Hospital feeling a bit disoriented and had difficulty taking her medicines.  After a bit the nurse checked Bonnie's oxygen saturation levels in her blood and found it to be low and Bonnie was running a low grade fever of about 101. 

They decided to send her to Brigham and Women's Emergency Room for further tests and care.  When I arrived to BWH's ER Bonnie was breathing with the aid of tight-fitting oxygen mask and looking a bit wan.  She was happy to see me and told me of her adventure and how it all seemed like a bad dream.  I held her and kissed her head and I re-arranged her gown and bed clothes so she could get warm again. 

The unsinkable Dr. J.

As for Dr. J.   She has done it yet again - fooling all of the doctors and nurses expectations.

The 6th floor (BMT floor) did not want to accept her citing some rule that she was near their borderline of oxygen consumption and they did not want to have to observe her closely.  In point of fact, Bonnie was doing fine on a 50/50 oxygen / room air mask with a trickle of oxygen being feed into it and was comfortably within the 6th floors guidelines - but this was during airing of 2 NCAA championship games.  So you can imagine where Bonnie got sent. 

Bonnie had to wait for the shift change on the 3rd floor Medical ICU circa 6PM.  By the time I got her room at Youville cleared out and back to her circa 9PM she was off of the oxygen mask and on those tiny clear tubes in her nostrils.   

By the time we spoke this morning she was off of the oxygen and breathing room air on her own and very alert and upbeat.  Far more so than her poor husband.  Of course I have not had a transplant with 30 year old male stem cells. 

God sure has a sense of humor.

Well, God sure has a sense of humor.  I promised to be dancing with Bonnie by the light of the infusion machine and it was almost so, but not quite. 

We had settled into our cozy hospital room at BWH, with two beds, and just before I kissed Bonnie good night, I said I am here for emotional and spiritual support.  Let's let the nurses be your medical and bathroom support tonight.  She laughed and agreed. 

Bonnie had drifted off to sleep and I was tossing and turning.  Hospital beds do not have a "sleep number".   By the light of the infusion machine I saw Bonnie's hand raise.  I guess she rang the silent nurse call button.  I asked if she needed help.  She said yes, she needed to get to the toilet.   I asked if she needed me to help now or should we wait for the nurse.  She said let's wait five minutes and see if the nurse comes.

Heart to heart with the Doctor in Chief.

Bonnie and Dr. Cutler had a heart to heart talk this morning in Bonnie's room at BWH. 

Dr. Cutler says Bonnie is getting "better", she is not dying.  He told her she is in for one month of grueling rehabilitation at Youville, and many months at home.  And he says Bonnie may not feel well for a month or more.   Bonnie was equally candid about her condition and concerns.  They respect each other's candor and each was listening beneath the words spoken.

Bonnie told Dr. Cutler that she is up for the rehabilitation route.   Bonnie has never been slow to figure out the better of two options. 

I am off to clear out yet another hospital room. 

Please let Bonnie get acclimatized to her new setting for a day or so before calling or visiting.  Let's not emphasize her condition or the weeks ahead.  Imagine there is a "no rubbernecking" sign above her head.   Please keep your choice of subjects to what is new and good in your world. 

Stories of your grandchildren, children, gardens, house remodeling -- the beauty of the spring are most welcome!!

Bonnie is back at Baby Boot Camp

Bonnie graduated from Brigham and Women's Hospital and the Bone Marrow Transplant floor to Youville Rehabilitation Center - or what we call the Baby Boot Camp.  She is likely to be there for about a month or until she can walk and get up out a chair and do routine things again.

This morning her son, Ron, sent her a training jersey from his Leukemia and Lymphoma  Society bicycle fund raising rides.  He rode 100 miles in a recent ride and is up to 500 miles of training and fund raising rides this month.  Bonnie is going to wear Ron's cycling jersey to the gym when she does her rehabilitation work in the coming weeks. To say that Bonnie was thrilled to receive Ron's Saturday delivery FedEx with his jersey, note and pictures is an understatement.  Bonnie has the jersey and Ron's 100 ride medallion in plain sight.