Bonnie Recovery

All Systems Go

I saw Dr. Cutler after a LONG day of pre-transplant tests including twenty-five vials of blood for testing and getting some radio-active isotopes infused for testing my heart.  We are all systems go for me to enter the hospital on Aug 22^nd to begin the transplant process. 

The other good news is that he approved me to travel to NC for Zac’s birthday, a week at Camp Zac (an ocean condo with a pool, not ours), and ten days at our ocean front place.  We leave with joy this Thursday morning.  When I asked about swimming in the pool, he said inside a pool would be the best way to play with a five year old who will be a “cesspool” of germs; the chlorinated water will be my best protection.

My leukemia count is not ideal for a transplant, but I continue to be very “hypocellular” with only 30% cells in my marrow.   All other things being equal, transplants do better when there is plenty of “space” for them in the marrow.  I’ll have plenty of space for those little guys, and I do mean guys.  Have I told you that my blood will not only change from O+ to A+, but my chromosomes will be XY?

My blood count (before they removed 25 vials from me) was good today, much improved from a week ago. I am just about at the 500 neutrophils that mark my escape from neutropenia (I was about 490 today).  Total white count is still poky, but more than 70% of it is now neutrophils.  My platelets are a strong normal (260) and red blood is near normal.  Cutler thinks that the assessment of leukemia in my marrow is “incongruent” with my recovering blood counts; it just doesn’t make sense he said.  Daniel and I hope that this means that the cells the pathologist thinks are leukemia are just the “strange” looking cells I had before the strong remission I got in 2002.

Tomorrow is packing day.  We’ll try to get a new posting with some fun pictures we’ve taken while Sally Rosenthal was here.  Sally can attest to Daniel’s expertise with his new latte machine.

We are very very happy to be proceeding.  I am surprised to be cleared for transplant.  On Tuesday of last week I had not only a high fever, but a high leukemia count in my bloodstream.  Maybe it was my marrow cleaning house of cells that weren't maturing.  Well, well, well, you can never tell.

Today would have been my sister’s 70^th birthday.  I miss her a lot and thank her everyday for opening the door to church for me.  She was a brave and loving woman.

B for BanD

Bonnie Running "Camp Zac" by the sea

Well Bonnie is running "Camp Zac" by the sea 24 hours a day.  She will provide the details of the camp schedule and activities, but suffice it to say that Zachary and Lucas are having a ball, and Bonnie is eating, sleeping and drinking grandkids as they are in residence with us here in North Carolina.

We cleaned up our apartment in Cambridge and packed up for North Carolina and were on the road within a day of Bonnie's last doctor's appointment.  We packed everything we would need to run a successful "Camp Zac" for the grandkids including a couple of Ikea blue shopping bags full of the baby toys that Jackson has outgrown, now that he is a soccer boy.   We made the drive over two days in 17 hours and picked the boys up at their pre-school.  Bonnie's face hurt from smiling so hard.  Her eyes were twinkling and sparkling as brightly as I have ever seen them.

Zac's birthday at the ice skating rink was a joy.  Seeing a dozen or so boys and girls around 5 years old and the young parents and siblings that came in tow was a pleasure.  Bonnie will provide details and tales of her time with her boys here.

The point is that she is being the GrandBee and getting lots of exercise chasing down her boys and swimming in the pool.  We will post some pictures that warm our hearts.  I think it was worth all of the effort and risk Bonnie undertook over the last 4 months to get to Zac's 5th birthday. 

We are blessed.

/Daniel for BanD

NO PHONE again!

Tonight I accidentally dropped my phone into some water and now it is out of commission again! Though we still have insurance on our phones, it will take days to get it replaced and working again. Yuch. Until further notice, please reach me on Daniel’s phone: 650-248-9299. 

Despite this mishap and hassle, we feel so blessed to be here. We are having a great time here at Camp Zac. We’ve moved from the condo with pool we rented to our beach house. Jen took today off work and was here on all weekend as well as today with the boys and us. My son Ron came from LA for the weekend. I continue to be strong in taking care of the boys, but I need a nap everyday.

Here are pictures of some of our Condo Camp Zac activities. Tomorrow Zac gets his first skate boarding lessons. I’ll post skateboarding and beach pictures later. Camp Zac is very busy, but we have lots of ice cream with chocolate sauce to keep us strong.

Reading and Writing

It’s a “Zachary-free” day at the beach. I slept till 11 without a little boy coming in at 7 whispering to me, “GrandBee, let’s watch cartoons.” I’m out on the porch watching the sea and its waves lapping the sand. I can see eleven people out for their morning stroll or sitting watching the waves from their beach chairs. We have a great umbrella set up near the surf, but I seldom feel the need to move closer than the porch. The Corp of Engineer’s dune, created in 2001 to preserve the beach’s turtle sanctuary, has grown several feet over the years and now the sea oats have firmly taken charge of the terrain marked by picketed fences on each side of the dune. This is the first year the stalks of oats, some of them more than four feet, are sticking up above the crest of the dunes. The stalks aren’t blocking our sea view but we are seeing the sea through the veil of sea oat stalks. 

Phone turned on

I won’t have my Treo 650 until next week.  I transferred Jennifer’s old Sprint phone to my number; I am available at 650-324-3816 again.  It is more difficult for me to call you because I have none of my numbers stored in the phone.
B

Drove Straight Through

At 2pm on Sunday we decided to spend Sunday night at the beach and drive early in the morning and as far as we could on Monday.  We left the beach at 11am and arrived in Cambridgea about 4am.  The drive was great including a couple hours at Ikea for dinner and picking up a few things. 

I check in the hospital in the morning (Wed) at 7 and go straight to intervention radiology for insertion of central line sometime after 7:30.  We are heading off to our favorite Mexican restaurant for my last restraurant meal for the next 200 days or so. 

Daniel's phone is currently not working; until further notice reach us via my temporary phone: 650-324-3816.  YES, we know I'm headed for the hospital and all that brings when our communications start to fail.  I'm grateful to have the broadband working at home.  I tried unsuccessfully for an hour to get an Earthlink dial up to use in the hospital; can you tell I"m frustrated?  I"v asked my nurse care coordinator to try to get me assigned to room 615, the floor above 515 where I got broadband from Children's hospital next door.   I take my utter frustration at this moment to come from a fit of anxiety about what happens next.  It is time for me to turn my attention to non worldly communications. 

I still intend to post that Camp Zac wrap up tonight.

Love to you, Bonnie for BanD

Becoming a Perfect Host

Today Bonnie restarted her work to become a perfect host.   No this is not something Martha Stewart can help her with. 

Modern medicine says to become a perfect host Bonnie needs a fifth round of chemotherapy.  hmmmmmm do you think that the way we practice "modern medicine" today will be considered an oxymoron in a decade or two?   just a thought.   

So Bonnie started her first of four days of chemotherapy today. 

The idea is to reduce the "leukemic load" in her bone marrow and to reduce her immunity so the new donor stem cells will have a chance to "move in" and "feel at home" in Bonnie's bone marrow when they are introduced on the 30th of August.  It will go something like this.  Oh hello, Stem Cells meet Bonnie Johnson, your new host,  Bonnie Johnson meet your hope for life, your new guest Stem Cells from some good Samaritan, the only known match in the world for your almost unique HLA type.

So here is what Bonnie had to do today to work on becoming a perfect host...

Fever - And Joy,

Bonnie had a fever for about 24 hours that peaked at about 102.  Bonnie was mostly asleep when I arrived after being awakened by doctors and nurses most of the night and morning, all working to reduce her fevers.

Bonnie and I had a few quiet hours with the afternoon light coming into the room, to the steady tick tick of the chemotherapy drugs being pulsed into Bonnie's chest.  This time it is Fludarabine and then the Busulfan.  FluBu is a magical synergistic medicine that addresses the problem of how to conserve low toxicity while maintaining antileukemic efficacy.  Here are two relevant, facinating articles, at least they are facinating to us.     http://www.bloodjournal.org/cgi/content/full/104/3/603        and  http://www.bloodjournal.org/cgi/content/abstract/104/3/857

This afternoon we saw Bonnie's bone marrow transplant doctor.  To Bonnie's relief the bone transplant is going forward, fever or no fever.  Furthermore, it has to go forward, on schedule.  It is Bonnie's last and best chance for long term survival.

I brought Bonnie fresh organic green tea.  Small joys.  To ready the new, cellophane wrapped tea box to be cleared to go into Bonnie's room I had to swipe the tea box with wet sheets of antibiotic, anti-fungal, and more anti-anti;  The chemicals are sufficiently caustic to require medical gloves to handle.

Concurrently, I am having difficulty in getting Buildings and Grounds to take care of the standing water in our laundry room every time there is a big rain.  Further there is mold and mildew growing on the basement walls beneath the master  bedroom windows in the on-campus apartment that we rent from the school.

Bonnie and I had a good afternoon just hanging out in the safety of Bonnie's room, Bonnie's attention waxing and waning.    The chemo is not a picnic even when there is no fever or fear.

After a few hours of experiments in Bonnie's latest hospital room, I found a wireless network I can hop on, though unreliably.  We shall see if I can have a stable wireless broadband connection for the Queen of Broadband tomorrow.

When Bonnie looked like she was ready for much needed sleep, I went on home.

This evening by cellphone Bonnie told me her fever was down under 99, followed by our usual dance; How are you and what needs to happen next and any funny hospital stories or observations about our doctors. Then we get to the important stuff: tue exchange of reports on Zac and Luc and Jackson.  I spent the morning with Jackson and Debrah.  Bonnie spoke with Jennifer at some depth.

What a trip our grandkids are: to say nothing of their parents.  Bonnie and I laugh and grin at the rich lives each of our boys is living today; Lucas took his first steps, on this the eve of his 10th month birthday!! and ....

Rough Time of Late - Transplant tonight

Bonnie has been having a rough time for the last 72 hours with fevers, nausea, diarrehea, double vision and some disorientation.  She apologizes for not posting or being much available by telephone.   The doctors think the double vision and speech difficulties are a function of a particularly virulent anti-biotic and a possible synergy with the chemotherapy and anti-immune drugs she had infused into her system over the previous 4 to 6 days.

Bonnie got a bit more sleep last night and sounded a slightly better this morning. 

Her transplant is tonight at 8:30PM. 

Please let Bonnie sleep today and use her e-mail rather than her cellphone. 

Thank you for your love and support.

/Daniel for BanD

Stumbling into the Promised Land

As we celebrated Bonnie's "new birthday" (transplant day 1), we laughed that we have finally "stumbled into the promised land";  We have been working for about 9 months to get to Bonnie's Bone Marrow Transplant.  Any mental images we may have had of us racing across a cleanly marked finish line and bursting a tape with cheering crowds and cameras flashing like at the end of the Boston Marathon were replaced with the realities of more delays and drug-induced fog.

No clear finish lines, or racing with the wind in our hair;  No we rumbled, we bumbled and we stumbled out of the last round of chemotherapy headlong into Bonnie's first day with her new stem cells flowing in her veins.  We pray that the new little cells are looking for -- and finding -- new spaces in her bone marrow in which to take up residence.  Live long and prosper:  multiple and divide little stem cells.

Given the last nine months, who could be surprised when Bonnie's scheduled 8:30 PM transplant came off 13 hours late;  The transplant material had not yet been received by Dana Farber Cancer Institute by 9:30 PM Tuesday night.  Yikes.

Bonnie has been saturated with drug after drug for a week to make this precise appointment.   Most of the day she had been hooked up to the infusion machine getting drug cocktails and every anti-this and anti-that known... but when it came time to pour in the stem cells - they were nowhere to be found. 

Did the courier miss his plane?  Did the courier get into an accident on his way to Dana Farber this evening?

When it rains ... Ernesto is sitting on our beach houses near Wilmington, NC

When it rains....

Bonnie called to tell me that our beach houses on Oak Island, North Carolina (near Southport and Wilmington NC) are in the bullseye of Ernesto right now.

Bonnie laughs.  What will be, will be.  No tropical storm can darken Bonnie's new birthday. 

/Daniel for BanD