Monday, October 31, 2005

Mike at Friedman's Annual Photo Carving Contest

Happy Halloween From Mike!

Sunday, October 30, 2005

Bonnie Feeling Better: Note from Mike

Bonnie Feeling Better; Getting Stronger

Not a lot to add to Katy's wonderful synopsis of her visit, Bonnie's progress, and Bonnie's daily routine. Her days are full wrt medications and clinic visits; she is feeling weak -- but stronger each day; we are by no means out of the woods in any way, shape, or form; and we still have a long road ahead of us.

...But, having said all of that, holy smokes, have we passed a big hurdle. And we are all feeling pretty good about it. Engraftment is good.

Some notes on Bonnie. Isabel, Devon, and I had a great 6-day visit with Bonnie last week and returned this past Monday. Bonnie struggles with the to-be-expected side effects and issues, including fairly significant atrophy from being bed-ridden for over 75 days. However, just seeing her outside of the hospital was uplifting; the effect on the girls was palpable. It changes the entire demeanor of the visit when a hospital visit is not involved. And, as expected, Bonnie continues to be a rock, and is just so damned inspiring to see and hear. Given all she has been through, she just looks amazing (no bias here); it is uncanny.

...Family meals together, hours of unscheduled time with Mommy, walks in the park, a field trip to an Apple Orchard. Without hospital rooms. Without IV poles. It was an amazing visit.

Of course Bonnie continues, and will continue, her clinic visits for another 6 weeks, or more. But, if all tracks the way it is currently tracking, she will be able to come home in Mid- to late-December.

Isabel, Devon, and I are now prepping for our next 6-day trip to Minneapolis on Wednesday of this week. We are all really looking forward to it. (Promise to be better about more photos this visit -- by clearing out my two now-full photo memory cards in advance).

First chord's a charm. (Just a late bloomer).

Mike

Wednesday, October 26, 2005

Bonnie update: Note from Katy K.

  Posted by Picasa

I'm Katy (Beierle) Klinkenberg (that's me in the photo above), a friend and classmate of Bonnie's at Dartmouth. I just returned home from Minneapolis, where I spent ten days living with Bonnie as her caregiver. As many have remarked before me, she has a wonderful attitude, and I think it sits on top of a clear vision about winning this fight. It was remarkable to see her improvement during the 10 days I was there.

When I first arrived -- October 13 -- she had just been released from the hospital, and her parents, Dale and George, were there caring for her. At that time Bonnie was still quite weak, having little muscle or fat as a result of her treatments -- she shuffled as she walked, easily stumbled, and liked to have someone walking at her side to grab onto when needed. She could barely get up from a squat or get out of a car without help, and she preferred not to carry her bags. She was giving herself transfusions in the morning and evening, and was spending 4-8 hours a day at the clinic getting various transfusions there. Right around that time Lauren and Glen Segal came to Minneapolis from California to see Bonnie, and spent quite a bit of time with us; and Kristin came for a day on her way to Indianapolis.

By the time I left, October 23, Bonnie had returned to her characteristic stride, and although slow and measured, she had gone for a number of walks of over half an hour. She climbed two flights of stairs without much difficulty, and in the past two days she's visited the gym in her building to use their elliptical machines. She had a great day last week where she really wanted to go shopping, and had no trouble getting in and out of cars and shops (fueled by her love of shopping, no doubt) as we toured around Minneapolis. Her transfusions and pills were taking much less time than before; she'd had a day off from the clinic when Isabel, Devon and Mike arrived, and had Saturday and Sunday off while they were there.

Last week she was asked at the clinic, how do you feel on a scale of 1-10? She replied that physically she was a 10 (on Tuesday -- the shopping day) and emotionally a 9.

I'll give you an idea of what her life is like now that she's out of the hospital: she wakes up around 7:30, has milk, medication and a self-administered transfusion. Usually she has an appointment around 8:30, and is there for 2-4 hours. They take her blood for various tests, and we would talk, eat breakfast and knit, waiting for results. Transfusions were next; she would be hooked up to her "pole" in a room that usually had five other patients undergoing similar treatment. One other patient was often Betsy, who had been Bonnie's neighbor in the hospital -- it was a boost to see her and her family there. After clinic, Bonnie and I usually had a big hunger attack (one of Bonnie's several new tendencies that I somehow sympathetically picked up), and we'd race for lunch. Twice this was Burger King, which Bon was craving, along with citrus fruits, especially mandarin oranges. Then out for a walk, usually by one of the beautiful lakes, or an errand, and back to the apartment for a nap. Dinners were in, since it was too cold by evening for Bonnie to be outside; and we'd settle in for a long evening of medications and transfusions along with knitting, story-telling and general girl-time before turning in. During those times it was easy to forget that Bonnie wasn't her regular healthy self, laughing and recounting funny episodes, as if we were in a college dorm again.

I would be remiss in not telling a bit about Isabel, Devon and Mike's visit last weekend. The girls were so happy to see their mommy, and didn't hesitate to go to her for reading stories, comfort from falls, and all the things that mommies need to be needed for. Devon sang a sweet little song of her own invention about mommy and daddy. Isabel decorated our apartment with lovely crayon drawings. Mike is a super-dad... it's hard to explain how he does everything he does (ask him about how he pushes the girls in their stroller in the airport, with all the luggage and car seats carefully balanced on a luggage cart, pulled behind him... I was awestruck).

Watching Bonnie heal day-to-day was truly heartening to see. Her friend Lisa Yohalem arrived from Seattle on Saturday night and is there until Sunday the 30th -- Bonnie's in great hands.

By the way, the best way to reach her now is by mail (she is not checking email and doesn't regularly receive faxes):

Bonnie Tonneson
2900 Thomas Ave. S. #2121
Minneapolis, MN 55416

--Katy

Gib's note: For more photos of Katy and Bonnie, click here.

Monday, October 24, 2005

Nike Marathon Report: from Charlie Hays

 
 Posted by Picasa

The run was amazing and inspiring, touching and overwhelming- so many women, so many survivors. The weather was perfect. We had a great group, and we all finished the half marathon (for you non-runners, that's 13.1 miles). From left to right in the photo is Tom Shields (Louisa got injured, so Tom stepped in- and got me to the finish line!), Betsy Berman, myself, Eve Saltman, Andrea O'Riordan, and Cindy Rose Quackenbush. Tamara Latorre ran in honor of Bonnie as well, though we did not see her on race day, and Ingrid DeMoor ran the Napa Classic on Sunday for Bonnie.

It was awesome to have people in the crowd yelling "GO BONNIE!" when they spotted the "bumper stickers" on our bums. In all, the event raised over $14 million for cancer research-wow!

And one more time...GO BONNIE!!!

Enquiring minds...

...want to know the latest from Bonnie. So, here's the latest from Michelle Ebersman:
Hi Gib,

Yes, I did speak to Bonnie today. She had a great visit with Mike and the girls. They left today.

Bonnie is still tired and mighty cold but is doing well. She worked out an elliptical trainer for 18 minutes today.

The next big medical event is a bone marrow biopsy on November 11th- day 60. The former teacher part of me couldn't help but remark that Nov 11 was the day WWI ended so that is a good day and good things will happen. I am not sure Bonnie bought that. Bonnie knows her white blood count which has been going up and down but they won't know what is inside the bone marrow until the biopsy.

Fingers and toes crossed...

Michelle

Thanks, Michelle, for the update.

Sunday, October 23, 2005

10,000 Visits!

Go Bonnie! We've just hit:

1One Digit / 0K

...visits! That's 10,000 people who care about Bonnie!

Continued good health to Bonnie and thanks for being here!

Gib

Saturday, October 22, 2005

Bonnie update: Note from Charlie

I got a call from Bonnie this afternoon, wishing us all luck in the run tomorrow. She is working on walking all the way around the lake, and thankful for all the benches. She says she is more fatigued than any other post-hospital experience, which is not surprising given what her body has been through. That and lying around in the hospital for 75 days!

Her hair is growing back in, and is white. Bonnie wants to see what it will look like, and then will probably return it, albiet chemically, to it's more natural color. Maybe we should vote on a color- I think she looks lovely in lavender!

Mike and the girls are healthy again and visiting. The girls are enjoying seeing Bonnie outside the hospital, and have been playing in the park near the lake. They will return home Monday, spend Halloween here, and then return to Minneapolis November 2.

Bonnie remains upbeat and optimistic, looking forward to returning home in December- date TBD. She has an inside source in Hollywood giving her the scoop on
TomKat and the Kutchers, but if anyone has any good local gossip, she'd love to hear it! Although she has voicemail in the apartment, the voice you will hear is an automated one. Don't be deterred, leave her a message at 612-929-0629.

Charlie

Gib's note: Charlene Hays is doing the Nike Half-Marathon tomorrow as a leukemia fundraiser. Photos and a race report later.

Bonnie Kramer Tonneson t-shirts

 
 Posted by Picasa

Many people have requested the fabulous t-shirts worn by Bonnie's friends at the benefit auction. They are available for $22 each, and all proceeds will go to the Tonneson's. 100% cotton, they run a bit on the small side, so order accordingly. Please email Charlie Hays at charlene_hays@yahoo.com to reserve yours today! Or, just click here to send Charlie an email directly.

Click on the photo above to see an enlargement of the t-shirt, scroll down the page for more photos, or if you haven't seen them yet, click here to see more photos from the party a few weeks ago.

BTK "Kicking The Cancer 2005" t-shirts

 

Click on the photo above to see an enlargement.

Here's Charlie sporting her fine "BTK: Kickin' the Cancer: 2005 Tour" t-shirt. Posted by Picasa

This t-shirt could be yours!

 

Click on the photo to see a close-up! Posted by Picasa

Wednesday, October 19, 2005

Bonnie Update: From Dr. Kristen Hege


I was lucky enough to swing through Minneapolis on a business trip to
Indianapolis this weekend. I wasn't exactly sure where Indianapolis was, but
figured I could probably get there through Minneapolis, which turned out to be
the case.

When I arrived at Bonnie's apartment Sat night I had 3 immediate reactions: 1)Bonnie looked a lot better than I expected, 2) the apartment was definitely inhabited by a transplant patient as evidenced by the 12x18 inch weekly pill box, the crate of pill bottles, and the refrigerator half filled with saline bottles and infusional medications, and 3) the place was a sauna.

Knowing how undergoing a BMT has a way of changing one's physical appearance I really expected Bonnie to look the worse for wear, but the same classy, smiling Bonnie was staring back at me. One residual silver lining from all of the skin rashes Bonnie had in the hospital is diffuse hyperpigmentation of her skin, in other words a "suntan". This makes her look relaxed and healthy. She did comment that every time she rubs her skin with a washcloth in the shower the washcloth turns brown so the suntan is slowly rubbing off.

She doesn't have much body fat (did she ever?) so she gets cold easily. As a result she keeps the apartment at about 85oF. It didn't take me long to figure out why her friend Katie was always wearing a tank top. When the heat got unbearable we would escape into the guest room, shut the door and sit by the open window for a few minutes.

On Sunday morning Bonnie self-administered her daily dose of IV gangyclovir (the new medicine started to control the HSV6 infection) using a pressurized infusion ball. Then Katie, Bonnie and I headed to clinic for her daily visit. I must admit, I was impressed that they have clinic open 7 days a week. At UCSF we only have clinic Mo-Fr (chalk one up for the Univ of Minn). On the other hand their waiting room doesn't have an expansive view of the GG bridge, Marin headlands, and SF bay (chalk one up for UCSF). While in the waiting room we ran into a nice guy in his 30s whose wife was in clinic. She had an unrelated BMT for CML and was Bonnie's next door neighbor for much of her inpatient stay. She also has 2 small children and therefore a lot in common with Bonnie. She was having a lot of trouble tolerating any kind of food by mouth and was still receiving full IV nutrition and was too weak to really walk. By comparison it made Bonnie look like a track star.

We spent about 2 hours in clinic waiting for labs and a visit by Dr. Weisdorf. No electrolytes or blood transfusions were needed so we got out in record time(most clinic visits are 4 to 5 hours). Her WBC count was dropping after stopping her growth factor shot a few days earlier, but not so low that she needed another shot. Her liver and kidney tests were normal. Her blood sugar was a bit high, but Dr. Weisdorf commented that it was just a sign that her body was responding to a great stress and that this would correct itself over time. We spent awhile talking about the HHV6 infection and its possible role in suppressing the engraftment of the first 2 cords. They don't monitor for this infection routinely post transplant so they don't really know what the prevalence is, but they have found it now in at least 3 patients with delayed engraftment, suggesting that it might be playing a role. Her blood levels of virus had increased slightly in the past few weeks prompting the initiation of the new anti-viral, gancyclovir, which Bonnie administers at home by IV infusion twice daily. This drug is a double edged sword. It could either improve her blood counts by controlling the virus or lower them by suppressing her bone marrow . . . Time will tell.

After clinic we headed back to the apartment for a lunch of grilled cheese sandwiches and then went out for a walk around the lake outside her apartment. Bonnie would walk for about 10 minutes, then sit and rest on a bench, walk some more, rest; she was able to keep going This way for about an hour. After the walk she was ready for a nap, but only slept for an hour or so. She did comment on how easily she tires, but then her friend Katie reminded her that just a week ago she could only walk for 10 minutes, period, so she's making great progress.

All in all, speaking as someone who takes care of a lot of transplant patients, Bonnie is doing really well at the moment. Now that the initial scare from the slow engraftment seems to mostly be behind her, her current status is very encouraging. There's no active GVHD, she's eating well, her weight is stable, there's no evidence of infection other than a bit of ongoing HHV6, and the transfusion requirements and electrolyte problems are pretty routine. It remains unclear when she will return to SF, but her doctor had to admit that she wasn't exactly going back to a medical backwater, so she's negotiating for early December.

For now the days go by with a kind of medical monotony . . . Sleep, medications, eat, clinic, transfusions,eat, walk, sleep, eat, more medications, sleep and repeat, punctuated by visits from family and friends. It kind of reminds me a bit of the movie "Into the Void" about the incredible tale of survival of a mountain climber with a badly broken leg who crawled down the mountain to safety after sliding over a cliff and falling into a crevasse. He measured his progress over successive 20 minute/50 yard increments over and over for 5 days, focusing at any given moment on the achievable goal of just continuing to move forward for another 20 minutes. Eventually, against all odds, he dragged himself and his broken leg off that mountain.

Kristen

Gib's Note: For photos from Kristen's visit, click here.

Tuesday, October 18, 2005

Satellite view of Bonnie's apartment

Click here for a satellite view of Bonnie's apartment and a view of Lake Calhoun in downtown Minneapolis.

And, as a reminder, if you would like to send a note or package to Bonnie, her address is:

Bonnie Tonneson
Calhoun Beach Club
2900 Thomas Avenue South #2121
Minneapolis, MN 55416

612.929.0629 is the phone number of Bonnie's apartment.

Monday, October 17, 2005

Kristen's photos from Minneapolis



(Click on the photo above to see a larger version.)

Kristen visited Bonnie in MN this past weekend and took my digital camera with her. Here are a few photos of Kristen, Bonnie, Katie (Bonnie's roommate from Dartmouth) and another friend who hails from Palo Alto (and for whom I need a little name help).

If anyone visits MN, bring shorts and t-shirts, as Bonnie likes to keep her apartment at 85 degrees. Note Bonnie's walking-across-the-street-clothes which include long underwear, jacket, hat, skarf, and gloves. Local temperature is 70 degrees -- the most common complaint from bone marrow transplant patients is "I feel cold all the time" given they have little body fat.

If you know the name of Bonnie's Palo Alto pal, you can click here to email me with this vital tidbit. If you'd like to see more full-size photos, just click here.

More MN Photos from Kristen


Here are a few more photos from Kristen. You can see the pillbox, from which Bonnie takes about 20 pills/day, and the refrigerator, which is filled with medical supplies, too. Bonnie's apartment looks over a lake, which has ducks swimming in it. Kristen, Katie and Bonnie took a walk along the lake; it's 50 yards of walking, followed by a five minute pit-stop for Bonnie.

Click here, if you'd like to see full-size photos, or click on any of the snapshots at the right side of the page.

Saturday, October 15, 2005

Kristen off to visit Bonnie in MN



Given that Michael is homebound with Isabel and Devon in Burlingame, Kristen Hege decided to combine a site visit in Illinois with a visit to Bonnie in Minneapolis tomorrow (Sunday). She is taking with her this ancient Chinese character painting that a bone marrow transplant patient of hers in SF painted for Bonnie.

Apparently, this was a common "get well card" a few millenia ago. The translation is "Set your mind at ease. Set free your heart." The red characters in the bottom right are dragon-blood red, and in ancient Chinese culture there is no differentiation of mind and heart so freeing both of disease and worry is important.

I am looking forward to a posting and photos from Kristen soon. For those who don't know her she is confident with all medical technology, but there's no telling whether she will manage a photo and posting from her newly-purchased Treo. I suspect I'll get a long-hand report and photos of her thumbs upon her return, but we'll see, won't we?

Thursday, October 13, 2005

Bone Marrow Biopsy results= Positive

Here is a note from Michelle Ebersman with the results of Bonnie's most recent bone marrow biopsy:

Hi All,

Bonnie's counts continue to grow!

She is hypocellular; she has few cells, but she has pre-cursors for all the cells that she needs. Her cells are 100% boy and there are absolutely no traces of the third cord (second transplant). The boy beat out the girls (the first transplant had one boy and one girl cord and the second transplant had one girl cord).

Unfortunately, Bonnie's herpes has come back. Yesterday they started her on a new anti-viral to combat the herpes. She said it is a very strong drug and she told me the name but I have already forgotten it. (My apologies to the medical gurus who might be reading this.) It may stop the growth of her cells for now but it will also hopefully wipe out the last road-block.

Mike is still sick so Bonnie moved back his trip until next Wednesday.

Bonnie sounds tired, but good. She spent 9 hours at clinic yesterday and 7 hours today. She needed 2 bags of platelets that the hospital needed to get from the Red Cross b/c the hospital didn't have any. While they were waiting for the platelets, Bonnie and her folks went to the Patagonia store to buy some cold weather clothing. It was her first time in a store in over 2 months and she said it felt "darn gooood". I can only imagine!

-Michelle

Probably the first time in the Tonneson household that the boys beat out the girls. (Certainly never happens in my household.) Kristen is visiting Bonnie on Sunday, so I will have a full report plus pictures early next week.

Monday, October 10, 2005

Bonnie's new phone number: from Michelle

Hey Gib,

Bonnie just called and asked me to get her phone number at the apartment on the blog :

612.929.0629

Most importantly, Bonnie's white count continues to climb!!

She has been out of the hospital 24 hours and has had 2 low-grade fevers, which has reminded her how precarious her situation is.

It is 30 degrees in the morning and Bonnie is "freezing". She has very little body fat and is unable to regulate her body temp yet. Apparently, it is standard Minnesota landlord practice not to turn building heat on until October 15th, which isn't helping Bonnie out. Just a few more days...

Today she had a Bone Marrow Biospy. It is Day 21 after her second transplant so they want to see if there are cells in there. I asked if it was a medical impossibility for there not to be some sort of engraftment if her white blood cells are continuing to rise and she agreed that it is just about certain there has been engraftment. But she will still no doubt feel better when she has the medical proof from the biopsy.
She spent 4 hours at clinic today getting an IV of various electrolytes and will continue to spend 4 hours a day there in the near-future.

The most surprising thing for Bonnie is how tired she is. She thought that she would be out and about town now that she is out of the hospital but she said when she is not at clinic, all she wants to do is sleep. She wasn't expecting to be so tired from "living life".

Mike is under the weather so his trip with the girls may get pushed back a few days. They are scheduled to arrive this Wednesday.

It was so great to hear Bonnie's voice. She sounded tired, but strong. She continues to carry on and inspire.

Michelle

9,000 Visits...

Who would have thunk we'd hit 9,000 visits on about the same day Bonnie was able to leave the hospital -- off to her swank apartment across the street -- on about day 60 of her initial transplant.

9One Digit / 0O 0K+E leroy pen

Thanks for visiting! If you haven't been here recently, lots of news, so read on.

Saturday, October 08, 2005

Bonnie's cheeks hurt -- from Charlie Hays

Hi All:

I spoke to Bonnie yesterday after reading Mike's post,
and through all the laughing and the tears, she told
me her cheeks hurt from smiling! She has really been
kept in the dark the past few weeks, since she had
asked her doctors not to tell her what her white cell
counts were. A nurse let it slip that she had been
trending, and Bonnie was able to put two and two
together and figure out that this was much bigger
news. She's quite familiar with all the tests and why
they would do them, so even though they didn't tell
her, she knew what the DNA test was looking for.
(Smart girl- nothing gets past her!)

She is, needless to say, on cloud nine, and eagerly
awaiting the arrival of Mike and the girls. She had
promised Isabel that she would be at the apartment for
the next visit, and is relieved that she can live up
to that! Far from being cautiously optimistic, she is
exhuberantly so, and has given the green light for the
rest of us, too, so raise a glass to Bonnie- YOU GO,
GIRL!!!

Cheers,
Charlie

Friday, October 07, 2005

Bonnie's new address: From Racky Friedman

Hey Gib,

Thanks for the update, amazing news is right! I just spoke with Bonnie and she sounded great. She was so excited to tell her parents this morning that they would be taking her to the apartment tomorrow. Seventy plus days in the hospital has left her pretty tired, so she is looking forward to getting out and starting some physical therapy. She is happy to be leaving the hospital and moving into the next "phase." She knows there may be a few bumps in the road ahead, but is ready to roll right over them. Being the fighter she is, I have no doubt.

She wanted to let everyone know her new address:

Bonnie Tonneson
c/o Calhoun Beach Club
2900 Thomas Avenue South #2121
Minneapolis, MN 55416

You can call her on her cell as they don't have a phone hooked up yet.

Best,
Racky

More amazing news from Bonnie!!


October 7, 2005-- from Suzanne Melvin (aka Susi Asmar)

That Bonnie considers me her “good luck charm” is nothing short of an honor. I left Minneapolis this morning, and called Bonnie from the apartment to say good-bye before I left, when she gave me the incredible news that she would be able to go “home” (apartment) either today or tomorrow. Her parents arrived last night, and it took all of my control not to spill the good news that her numbers were so good, she’d be out any day.

I spent a week with Bonnie, who being a competitive type of girl, was I think slightly pleased that if she at least had to be in hospital so long, she might as well break all records and earn the inauspicious title of “longest to engraft”. Read: longest stay, and no doubt, most beloved patient.

Turns out, the cord taking charge in her body is the boy from the first transplant. I told her, go figure, boys have a funny way of taking longer, and maybe he even needed some coaxing from cord #3 (a girl, who woke him up).

Being one of Bonnie’s oldest (not in age, thank you) friends, we found it quite amusing to occupy our time by googling our old classmates from grade school. Good thing we were only 12 and 13, since it turns out, we had crushes on a few of the same boys. Any older, our friendship may not have lasted 26 years!

Going home this weekend is a big change from last weekend, where Bonnie struggled with high, spiked fevers and headaches. Having been given a hall pass and wanting to get out, we had been roaming the halls of both 4B and 4A (pediatric unit). Turns out there were a few cases of meningitis in the pediatric unit, so the doctors wanted to rule out immediately any chance of Bonnie having gotten it. Trying to avoid any further misery, they decided to do the lumbar puncture (spinal tap) using a more modern approach involving x-rays, etc. The whole point was to avoid being poked twice, but the doctors hit bone the first puncture and had to go down three vertebrae and try again. 12 CC’s of nice clear spinal fluid was later confirmed through tests that there were no signs of meningitis.

When she was feeling better, we roamed the hall (now just 4B), Bonnie dragging her friend, the pole, while I read the latest gossip from smutty magazines like People. Turns out Bonnie is so well informed on Hollywood gossip, I couldn’t wait to call my friends at night and relay some of this information.

Bonnie requested I photograph her tummy, which she proudly refers to as her FOURTH pregnancy, and post it on the blog…

Mike and the girls (who have been sick, and Devon is was just treated for strep throat) are coming out this Wednesday, and no doubt, will celebrate appropriately.

Please keep sending your notes, as those really get her through some days, and your radiant energy to her cells, which she continues to talk to every night. I now know that “culture day” at the hospital has nothing to do with The Arts.

GO BONNIE!! Xoxoxo

-Suzanne Melvin aka Susi Asmar

Gib's note: To see large-sized versions of the photos click here, or on any of the photos on the right margin of this page.

Amazing news from Mike!

Engraftment is Here; Hospital Discharge is Imminent.

Well, it looks like I have the green light on breaking my cone of silence. Bonnie got definitive word this morning that the cord transplant from back on August 4th has staged a late comeback and has now full engrafted. She will be discharged from the hospital either today, or, more likely, tomorrow, Saturday.

We started seeing evidence of engraftment over two weeks ago, while Isabel, Devon, and I were visiting. In fact, the (white blood cell count) numbers, started coming up sharply only two days after the (Sept. 19) second transplant However, those same numbers would spike up and then come back down somewhat the following day. This was further complicated by the following question: Who and what is cooking in there. There were now four potential sources of white blood cells inside of Bonnie: Bonnie's old immune system, plus the two cords from Aug 4, plus the new cord from Sept 19. Bonnie was an unlikely source, given the super-high-dose chemo and TBI(Total Body Irradiation) she had received prior to the first transplant. It was far too early for cord # 3 to have engrafted already , and they had already ruled out cords #1 and #2, as having failed to engraft given the time delay.

...But the numbers kept creeping up -- enough so that they let Bonnie out for a walk in the park (with a mask on) on the last day of our visit (Sept 26). Photos were posted. That was the first time Bonnie had been out of the Leukemia ward in 57 days.

This has been such a rollercoaster, that Bonnie requested that the team of doctors stop reporting the daily white blood cell counts to her each morning. We have been let down so many times, that she did not want to have to keep processing this info each day and obsessing over it. All agreed that we wait until there was a definitive trend-line before we starting reviewing day-by-day numbers again. Bonnie asked that I do the same with respect to my communications via the blog, etc., so as not drag all our friends and family through the same daily roller coaster, only to be let down by another false positive test result.

Well, that weak trend turned into a strong trend. And the numbers have now been relatively high and climbing for well over a week. You may recall that Cord #2 was a boy, and the DNA test results we got this morning confirm that he is the one cooking in there; 100% of the cells show a male genetic marker, indicating that he beat out the competition and has engrafted. Her counts are high enough now that she is completely non-neutropenic and therefore, ready for discharge. That will likely happen tomorrow morning.

Bonnie now holds the record for the longest period between transplant and engraftment. We will get more definitive confirmation on Monday with an additional bone marrow biopsy, but for now, there is nothing quite so telling as an immune system that is actively generating
normal white blood cells.

We are all walking on air right now, as you can imagine. What she now faces is a transition to being an outpatient, wherein for the next 70 days (estimated duration to be confirmed Monday) she will be living in an apartment in Minneapolis with a rotating chaperone, and will go the clinic each day. This would potentially put her home in SF around early December (subject to further testing on Monday and beyond). But for now, a huge milestone we can all celebrate.

...More to follow.

Mike

Thursday, October 06, 2005

Day 17 update from Michelle Ebersman

Hi Gib:

I spoke to Bonnie yesterday and she still had fevers. Her physicians did a spinal tap to rule out spinal menangitis because there were cases of that on the pediatric ward and Bonnie had walked through there -- now that she has a hall pass! The tests were negative and they still don't know what is causing the fevers. So, the peds ward is off-limits, for now.

Bonnie was taking it all in stride. She was more interested in discussing TomCat's (Tom Cruise and Katie Holmes) pregnancy and whether they are real or just a huge publicity stunt.

Michelle

Monday, October 03, 2005

Day 14 update from Michelle Ebersman

Here is a quick note from Michelle, who spoke with Bonnie recently:

Hi Gib,

I spoke to Bonnie at length on Saturday afternoon and she sounded terrific. However, on Saturday night she broke out in a fever and she still has it. As of noon PST today (when I spoke to her last), they still didn't know the cause of the fever and Bonnie feels beaten up.

For those celebrating Rosh Hashonah, please say an extra prayer for Bonnie. We tend to wish each other a "happy and healthy New Year". Give a big shout-out to Bonnie for a healthy New Year.

Michelle

Thanks, Michelle, for keeping us posted.