Gall bladder surgery = success

Here is a report from Michelle Ebersman, today's Burlingame-based “guest blogger”:

I just spoke to Bonnie. Her gall bladder surgery went well and she is at home recuperating. She doesn't have much of a voice because she had general anesthesia and she was intubated with a tube down her throat during surgery. She plans on spending the next 2 or 3 days at home resting.

-M.

Thanks so much for the update, Michelle.

Gall Bladder Surgery Day

Yesterday, Bonnie had another blood work-up, and her neutrophils were 6,000 and her total white count was 8,000 which is basically "high normal" which means she's got better counts than most of us. Ah, the wonders of medicine and "growth factors."

Given that all her counts look great, she should have her gall bladder taken out today. This will be done laproscopically and there's an outside chance that one of the incisions will be through her belly-button piercing. How cool is that?!

Good luck, Bonnie!

PS. As a reminder, next Tuesday Bonnie, her Dad and Michael head to MN for her intake meeting. They should return a day or so later.

Team in Training Fundraising Opportunities

I've blogged for blood, bone marrow, photos, hats, guest bloggers, and it's high time I blogged for dollars, too!

The Leukemia and Lymphoma Society has a program called "Team in Training" which provides participants coaching and training for endurance events in exchange for fundraising by all participants. I did my first half-Ironman with Team in Training and it's a great program. You learn alot about leukemia, but even more, you become increasingly motivated to raise more money and to make darn sure you cross the finish line as you think about and connect with leukemia patients -- honorees -- and help to find a cure.

The Society gives a very high percentage of its dollars to fund research, and there have been plenty of success stories. Gleevec, for instance, is a recent drug funded, in part, by the Leukemia and Lymphoma Society that helps patients with A.L.L. who have the Philadelphia positive chromosome. To give you perspective on this, it was a big sigh of relief two years ago to learn Bonnie was Philadelphia negative -- being Philadelphia positive was a very poor indicator. Two years later, with the success of Gleevec, it's actually encouraging to be Philadelphia positive as Gleevec works so well with this patient subset.

Anyway, Pablo Fuentes used to work for a friend of Bonnie Tonneson -- Andrew Rosenfeld -- and he will be doing the Maui Marathon later this summer and Bonnie will be his honoree. You can check out his site (and make a donation!) by clicking here. You can also email Pablo for more information by clicking here and he will send you a nice packet about himself and the Society (it's worth reading). Here's the link:

Pablo Fuentes' Team In Training Page

It's official: Remission!

Bonnie did receive the written results from the hematopathologist: the bone marrow biopsy from last Tuesday shows remission. (I think a WOOHOO! is appropriate here.)

Also, this Wednesday is the day that she has her gall bladder removed via laproscopic surgery. It should be a simple procedure to remove a non-essential, golf-ball sized organ. This is being done in advance of her bone marrow transplant, as they want to make sure Bonnie doesn't have any gall stone problems post-transplant. (She's had some gall stone problems (belly pain) a few times which seems to be a side-effect of the chemotherapy treatments.)

Thanks for visiting! You're visitor #...

If you recall, visitor 1,000 took a "healthy, happy Bonnie" instead of the lavish gifts and prizes I offered him. I'll assume visitor 2,000 seeks the same. (I'm out of swank schwag.)

Beachside Greetings...

I am collecting lots of photos for Bonnie's Photo Poster. Here's a cute picture I received recently, along with a note from Racky Friedman:

Here is a pic of the Friedman family-- Rick, Adam, Emily and Racky-- from our recent trip to Kauai. Emily wanted to send Bonnie a "heart" - she said it was her heart's love...

Thanks, Friedman family. If you haven't sent me a photo of you, your family, or any photos you might have of Mike, Bonnie, or their family, it's not too late. Just click on the link on the top right margin of this page where it says, "Send a Photo to Bonnie."

Bonnie Tuckie Brunch

This post via my Blackberry. Here I sit on the front lawn of Michael and Bonnie's house with fellow Tuck classmates of Michael and mine -- Karen Blodgett, Ann Marie Nemanich, and Lisa Segre Fuchs. Jack Fuchs, Kristen Hege and a pack of kids are here, as well. Gorgeous brunch that deserved to be photographed (but I forgot).

At the moment, I'm concerned about whether Bonnie's scalp is getting sunburned, which is the extent of any medical worries on this brilliantly sunny day. (No final results from the hematopathologist, as yet.)

For photos, see below, or click here to see Karen Blodgett's photos on Kodak's EasyShare site.

Photos from Bonnie's Tuckie brunch

Here are a few photos from brunch on Sunday at Michael and Bonnie's house:

It's a little hard to see, but one of the photos is of their kitchen cabinets, which are filled with labels like "PLATES", "SPOONS", "CUPS". Ann Marie suggested the labels were to help Michael find his way around the kitchen, but it turns out Isabel is an early reader, so there are labels all over the house with the names of objects on them.

I got a kick out of lifting up the toilet seat to see the word "TOILET" scrawled on masking tape on the under-side of the seat.

Bonnie's "Welcome Home" mural

I finally had a chance to take a photo of the mural that was on display when Bonnie returned home to Burlingame two weeks ago. Here's the full mural:




And here's a close-up photo of one section of it:

Waiting on Pins and Needles

OK, I confess. I'm waiting on pins and needles for the results of Bonnie's bone marrow biopsy to confirm her remission -- no news yet. The only news I have heard is that Bonnie's friends have found her a private charter out and back to MN for her initial meeting in early July. (Sadly, my jet is not available ;).

I do know that Bonnie is active about town -- she keeps dropping things off at our house -- and she's planning yet another meal. I'll let you know when the results of her biopsy come in.

Good (preliminary) news: Remission

Today is the day that Bonnie visited UCSF for a blood work-up and bone marrow biopsy. Here is a note from Kristen Hege (my wife and one of Bonnie's physicians at UCSF):

I just got a message from Bonnie and Mike. The preliminary read on Bonnie's bone marrow biopsy looks good -- it shows remission. Bonnie is still a little anemic, but white cells are coming up and platelets are normal. This is not definitive news-- it will take a couple of days before being signed out by a hematopathologist -- but it sounds good, so far.

I'll keep you posted on the results as they come in later this week, but so far, so good. (I'll do a few "Woohoos!" when the final report comes in.)

Monday night update

I can't offer much tonight except that when I got back from a long weekend trip to Portland, Oregon I found my Yahoo! email box crammed with photos for "Bonnie's Photo Project" and my real-life mailbox filled with mail that included a CD from Bonnie. On the disk, written with a Sharpie marker, were the words, "Hot Mama..aka..Sexy Bitch-- Enjoy, Bon."

These seemed like pictures worth looking at! So I turned on my computer, fired up my photo software, but couldn't get anything to work, then slowly realized it was a music cd that Bonnie had "ripped" for me and Kristen. The music was great -- lots of women vocalists-- and I could recognize Shawn Colvin and now know from Allison Lipnick that "Round of Blues" is a favorite of Bonnies so she must be in good spirits.

Bonnie goes in to clinic tomorrow for her blood tests and also has a bone marrow biopsy to discover whether she is in remission. Fingers crossed! Results will follow in a few days.

Thanks for all the pics!

But I'm still not satisfied! There's still time for more, so send a photo to gbiddle616@yahoo.com or click here to send a photo.

Guest bloggers wanted

I am looking for highly-skilled "guest bloggers" for Bonnie's Blog, given I will be doing a bit of travel over the next few months. If you're interested, and possess any of these attributes, please contact me:

- can you turn on a computer?
- are you on speaking terms with either Michael or Bonnie?
- can you spell "leukemia"?
- can you type and send an email to a top-secret email address that I specify?
- do you promise never, ever to blog while operating heavy machinery?
- did you know that "blog" stands for (we)b log? (You do now).
- can you get excited about 2,000 visitors (and accept grief from your media empire friends)?

Well, if you answered "Yes" to even one of the above questions, you're more qualified than I -- send me an email by clicking here. I'd love some help!

Are You Missing from Bonnie's Photo Poster?

See that big old question mark? That could be you! Please take a moment to send a photo of you and/or your family, along with any photos you have of Michael, Bonnie and their kids for "Bonnie's Photo Poster." You can send them to me at gbiddle616@yahoo.com, or simply click here and attach a (horizontal format) photo. There's plenty of room for photos as each poster accomodates 88 pictures.

For more details about this project, click here, or on the "Send a Photo To Bonnie" button in the right-hand margin of this page.

For those who have already sent me photos, your kids and families are beautiful! Do Michael and Bonnie have any funny-looking friends (besides me, my gap-toothed kids, and my wife with no hair)?

Just hit 1,500 visits!

It's 10:22 on Wednesday night and I visited "Bonnie's Blog" to make sure everything is up and running, and I noticed that I was visitor number 1,500. So, I'm bestowing upon myself lavish gifts and prizes -- maybe a "BTK: Our Hero" hat?!

Visitor number 1,000 never stepped forward. Langley Steinert, a Tuck classmate of Michael, was visitor 1,001 and in lieu of the many hats, bags, t-shirts, and generally swank schwag I offered him, Langley accepted "a happy, healthy Bonnie (and Mike)" instead.

1,500 hits! That's more than two times the number of homeruns Barry Bonds has hit! If you're still with me after that lame segue, I noticed that Bonnie and Barry Bonds have similar recovery schedules this week. Here's the quote right out of Barry's online journal: "This week, I will be getting off the antibiotics and have another blood test." Hum, that's suspiciously like the week ahead for Bonnie. And did I mention that Bonnie is on steroids?

Note to self: Don't write posts after 10:30 at night. Note to you: All's well with Bonnie.

Bonnie's first visit to Clinic = Good

Bonnie visited the UCSF clinic Tuesday. Her neutrophils are up to 1000, platelets are great, her red cells are good, and her white cells are sluggish -- which is expected at this point.

She's had symptoms of gall stones for a while -- episodes of belly pain -- and they've decided to take out her gall bladder before her upcoming transplant. It's not worth the risk of an infection, and the gall bladder isn't needed. Current plan is to take the gall bladder out on the 29th of June at UCSF.

Her bone marrow biopsy is scheduled for next Tuesday. This is when we will discover if she is indeed in remission. Then she'll head off to Minnesota on the 5th of July for an intake meeting, zip back to Burlingame, then start her transplant in Minneapolis about a week after her initial meeting.

She sounds well -- passing on cooking tips to me and scheduling future brunches. Sounds like her Dad is now in town, too.

Send your photos to Bonnie!

Send a photo to Bonnie by clicking here. (You can also email a photo to gbiddle616@yahoo.com.) Here's the scoop...

Bonnie is happily at home now, but over the summer, she'll be spending more time in hospitals. I'd like to find a simple way to bring a little bit of home and us into her hospital room.

Let's build a "Bonnie Photo Posters" -- a 20 by 30 inch poster that includes photos of Bonnie, Michael, Isabel, Devon, as well as photos of other family members, friends, favorite places, pets, whatever. Each poster is made up of 88 horizontal photos, and can be easily rolled up and mailed to Minneapolis, and carried from one hospital room to the next.

A "Bonnie Photo Poster" creates an effect something like this. (I can't reproduce a full-size poster on the web, and in a real version there's little white space.):




Think of it as a giant "Get Well" card --it would be great if you would be a part of it. Please gather digital photos of you and your family. Or, photos of you with Bonnie, Michael or her family. Or, favorite places from their or your lives -- you get the idea.

What do you do with the photos? Send them to this email address: gbiddle616@yahoo.com. Or, you can simply click here and attach a favorite photo to the email. It's that easy.

So, go ahead, find your family's holiday card from last year, a picture of Bonnie when she was in second grade, a photo of Michael from Tuck, or use your mobile phone to take a picture of yourself to become a part of "Bonnie's Photo Poster." (Horizontal formats please!)

Don't be shy! Send as many photos as you please. Cheese!

Mike's Mom and Dad in town

I suspect it was pretty quiet this weekend in Burlingame over at Pepper Lane, as I didn't hear any loud music or police sirens. Michael's Mom and Dad were in town, along with a college roommate. Here they are in their new "BKT: Our Hero" hats. (If you'd like a hat, contact Betsy Berman, by clicking here.)

Alicia's story: from the SF Chronicle

All last week, a story ran in the SF Chronicle about a 23 year-old copy editor for the paper who was recently diagnosed with a rare Sarcoma.

Sarcoma is a very slow-growing cancer, but because it's so slow it's very difficult to treat. Most cancer treatments, like chemotherapy, for instance, target fast-growing cancer cells, and in the case of Sarcoma, this strategy doesn't work.

The story is written by Alicia herself, and it's in real-time, with her last update over the Memorial Day weekend. It's quite riveting, and gives an inside look at dealing with cancer that's both very sobering and hopeful: Alicia's Story .

East Coast Bone Marrow Donation Drive

The Talmud states, "He who saves one life, it is as if he had saved the entire world." Here are two chances, in both Boston and New York for people of Eastern European Jewish ethnicity to contribute to a bone marrow donation drive for Bonnie:

Sunday, Jun 12, 2005
10:00 AM - 1:00 PM
Congregation Or Atid
97 Concord Road (Rte 126)
Wayland, MA 01778
978.440.8717

Sunday, Jun 12, 2005
9:00 AM - 2:00 PM
The Old Westbury Hebrew Congregation
21 Old Westbury Road
Old Westbury, NY 11568
516.455.9408

If you can't make either, here's the link to a "do-it-at-home-kit" via Gift of Life. Thanks.

Bonnie Back in Burlingame!

Here are Michael and Bonnie modeling swank new "BKT: Our Hero" hats that Betsy Berman and others had made for her. If you'd like a hat, contact Betsy by email by clicking here. More details on hat sales -- a fundraising effort -- later.

Apparently, the sign on Bonnie's door was AMAZING. As Betsy said, "There were so many messages and words of love. It was an incredible sight."

Bonnie's Homecoming: 3p.m. today

If you missed the big news last night at 7p.m., click here for more details. Otherwise, here's a note from Lisa Kearns, who has big plans today, given Bonnie's anticipated homecoming:

I am thrilled to report that Bonnie is coming home tomorrow (Friday)!! When I spoke with her tonight, she's targeting a 2pm departure from UCSF, arriving in Burlingame close to 3pm!!

Here's my idea: I will go to her house tomorrow by 10am and cover the garage doors with butcher paper. I will write a big "Welcome Home Bonnie!" in the middle of the paper, and then leave some pens behind so that you (and all those that you forward this email on to) can stop by the house sometime PRIOR to 3pm and write your own welcome home message on the paper as well. Bring the kids -- I'll leave washable ink markers, and they can help "decorate" the sign with their drawings, handprints, etc. I think that it would be wonderful for her to pull up in the car to a message from our community...

Hilary Somorjai will be stopping by between 11 and 12 to decorate their picket fence with helium balloons, as well -- should be a happy-looking yard!

Looking forward to having "our hero" home for a while...Thanks for your anticipated help with this project!!

Best to all of you,

Lisa Kearns
cell: 245-5983

At 11a.m. this morning, Bonnie was on-schedule for a 3p.m. arrival in Burrrrlingame. Bonus points to anyone who can send me photos!

Please forward this post on to anyone that you think might be interested in writing a note to Bonnie by clicking on the email button below.

Leukemia site nominated for a "Webby"

This medical resource site, "People Living With Cancer," was created by the American Society of Clinical Oncologists (ASCO) and was nominated for a "Webby" -- an award which honors the top websites each year. The Webby's are considered to be pretty cool so it's a big deal for a straight-laced organization like ASCO to get nominated.

Anyway, here is the link to the section that details A.L.L. (Bonnie's leukemia type). I also added the site to the right-margin of this page, to add to the growing list of links for cancer resources that are already there.

For purveyors of cool here is a link to all of the Webby winners. At the awards ceremony, Al Gore received a lifetime achievement for his contribution to the Internet (no kidding). His five word speech, "Do Not Recount the Vote."

Unfortunately, the ASCO site didn't win, but check out Rtm86.com for best personal site, or "Words At Play" (for best home page).

Save a Life This Sunday

I talked with a friend in NYC, Dan Stone, who happens to be on the board of directors for the local Leukemia and Lymphoma Society. He was glad to hear that we were working with Gift of Life. His sister, Barbara, was one of the long-odds cases where Gift of Life produced a last-minute match for a bone marrow transplant. Barbara's donor miraculously ended up being her best friend from college.

Dan also told me that recently Gift of Life helped a Long Island woman named Ruth Spector find a donor, and that she is now thriving. As he said to me, "The efforts of everyone really can pay off. While the matches are miracles, they are not rare."

Anyway, I reached out to him, looking to spread the word about the drive on the East Coast. If you have friends or family of Eastern-European Jewish ancestry who live in the New York or Boston area, please let them know about the following Gift of Life donation drives this coming Sunday:

- Boston (Wayland); Sunday June 12: 10a.m.-1p.m.
- New York (Old Westbury); Sunday June 12: 9a.m.-2p.m.

Click here for more information about either of these events.

I expect both events to top the 232 donors that attended last Sunday in San Francisco! And if you can't make it, please click here for a "do-it-at-home" bone marrow screening kit.

PLEASE PASS THIS MESSAGE ALONG TO EAST COAST FRIENDS & FAMILY BY CLICKING ON THE EMAIL ENVELOPE BELOW & ADDING YOUR OWN MESSAGE. THANKS!

Big News From Bonnie

It's 7:00PM on Thursday evening, and Bonnie's neutrophil count is:

Which means, tomorrow, she's headed:

That's right! Bonnie's neutrophil count is now 620 (more than the 500 hurdle!). UCSF is loading her up with magnesium, blood, and platelets, then shipping her home to sunny Burlingame (with a few Septra pills to take over the weekend). She'll probably be cooking (and eating) over the weekend, then she'll have a drop-in at the hospital clinic on Tuesday. Woohoo!

Get your geek on!

Here's a chance to express your "inner geek." "Bonnie's Blog" now has R.S.S. which stands for "Really Simple Syndication." What does this mean? It means instead of visiting the site daily to check for updates, you can set up a home page like "My Yahoo!" to automatically let you know when there have been updates to the site.

If you use "My Yahoo!," for instance, just click on the "Add to My Yahoo!" button towards the bottom of the right-hand margin of this page. Your "My Yahoo!" page will now show the headline for each new post that appears on "Bonnie's Blog." The site also has RSS "feeds" for MSN, and a few of the other major news readers, as well.

For a little more help with RSS, and how you can use it, click here for a pretty good layperson's description of RSS. Leave a comment if you have problems, or need help.

PS. I am not a geek!

Dinner w/Bonnie (from Blogger Blodge)

Here is a note from Karen Blodgett, who visited Bonnie on Wednesday evening, along with Ann Marie Nemanich (both classmates of Mike from Tuck):

Just came back from having dinner with Bonnie. Ann Marie came along, too. We brought burgers and fries from a local joint (Bonnie's choice). I know she won't be offended if I mention that she ate more than any of us - she chowed it all down!!! Bonnie was having a great day today - she looks wonderful, the energy and laugh is back in her voice and the sparkle is in her eyes, and she even went walking for the first time in a while.

While we were there her Doctor stopped by - Bonnie later told us he's new this week - he's obviously amused by her and says she doesn't even seem sick. Also called her a "VIP" patient and was teasing her quite a bit about this, and when she mentioned the walk today he said "What walk - you were moving so fast you didn't even have time for me!" Winning over those around her, as usual.

By the way, Ann Marie and I loved this Doctor because he let us drink the beer we'd brought along and failed to hide...! Don't worry, though, Bonnie only drank her Evian. (Tip for future visitors... this is the only water that tastes good to her right now, and she drinks at least a large bottle per day.)

Devon visited today - Isabel still has her viral cough, so isn't allowed. They had their usual fun of snuggling in bed together, playing with stickers and surgical masks, and going down the hall to jump on the chairs in the patient lounge.

Bonnie should be home by early next week - the counts are looking good. We heard the Doctor say so himself!

That's all for now,

Blodge

So, make sure you conceal your beers carefully, and bring plenty of water for Bonnie. Thanks, Karen, for writing.

Spread the Word: East Coast Bone Marrow Donation Drives for Bonnie Tonneson

Bonnie is looking for friends and family to attend East Coast donation drives to help her find a match for a bone marrow transplant required to cure her leukemia. The following East Coast "Gift of Life" drives are coming up shortly, and are focused on registering donors of Eastern European Jewish ethnicity:

- Boston (Wayland); Sunday June 12: 10a.m.-1p.m.
- New York (Old Westbury); Sunday June 12: 9a.m.-2p.m.

Click here for more information about either of these events. If you can't make these events, however, you can also:

- click here for a do-it-at-home kit through "Gift of Life," or
- learn how to join the National Bone Marrow Registry.

Last, if you're nervous about the screening or donation process, check out this link, demystifying screening & donation, or click here for Mike Berman's first-hand account of last weekend's bone marrow drive in San Francisco. (Mike was one of 232 donors.)

PLEASE PASS THIS MESSAGE ALONG TO EAST COAST FRIENDS & FAMILY BY CLICKING ON THE EMAIL ENVELOPE BELOW & ADDING YOUR OWN MESSAGE. THANKS!

1,000 visitors who care about Bonnie!

Congratulations! You may be visitor number 1,000 to "Bonnie's Blog." That's a lot of people who care about Bonnie! And this doesn't count the first three weeks of May, as we didn't start counting until ten days ago.

In celebration, leave a comment for Bonnie by clicking on the word "COMMENTS" just below this post! (She'll be able to see them there.)

PS. If you want to see exactly which number visitor you are, scan to the very bottom of this page and look at the number in the middle. And, yes, for you Internet aficionados, these are not unique visitors but rather the total number of visits to the site. If you're really interested, click here for more site metrics.

And let me know if you are number 1000 by clicking here
to send me an email. Fabulous gifts and prizes await!

Medical editing (and a neutrophil update: 130!)

A few of you might occasionally notice some changes after the fact to posts. This happened when I first wrote about the concept of neutrophil count. At the time, Bonnie's count was 20 and I carefully detailed that a "normal" count is 48,000. ("Wow!" I thought to myself, "Bonnie's got a long way to go!" as I typed the number.)

My wife (and medical editor) looked at that post and said "Where the heck did you get that number?" "From you," I answered. Turns out she had said "four to eight thousand," which sounds a lot like "forty-eight thousand" when you've got seven and nine year-old daughters rocking out to Avril Lavigne in the backseat of a car.

Anyway, Bonnie's neutrophil count today is 130, which is a nice jump up from the previous 20, and it's well on its way to the 500 count required to get her off antibiotics, and to eventually send her home.

If you'd like a (carefully edited) explanation of neutrophils and how you can watch this count to see when Bonnie will head home to Burlingame, click here.

PS. My Mom, in her first job out of college, sent 12 "dozen" men to a construction work site. Turns out they needed 12 (bull)dozer men. 144 men on site, and not one of them could operate a bulldozer. True story.

Donor story: quick, painless & all kids accounted for...

I have a first-hand account from Mike Berman who attended the "Gift Of Life" bone marrow donation drive last Sunday in San Francisco for Bonnie:

Traveling to the festival in the Yerba Buena Gardens this past weekend in San Francisco left me somewhat nervous about an unfamiliar medical procedure and really nervous about losing one or more of my children accompanying me. Upon our arrival, we asked the chain-smoking information booth attendee where the "Gift of Life" group was. His puzzled look and lack of familiarity with the map left me unsure as to exactly what type of information he was there to provide - he certainly demonstrated no discernible knowledge about the general festival purpose, people or geography.

Luckily, we soon ran into the Krieger family, a very welcome sight, in front of the booth. Charlie, who has a huge crush on Tracy, the mother Krieger, hid his face in my leg to avoid blushing in front of the object of his affection. Sarah encouraged Tracy to sing and I scrambled to review the clipboard that someone shoved into my hands.

I quickly wrote everything that I knew or felt like inventing about my medical history (I don’t really seem 6’2” but as long as no one was measuring . . . ) and sat down at one of the crowded tables. As a heavily-accented woman attempted to explain the steps that would produce another entry into the bone marrow donor bank, the Israeli rock band stepped up their Hebraic assault on my ears. (Funny, I am now becoming a crotchedy old man in two languages.) Due to the noise, my poor grandmotherly volunteer was forced to pantomime rubbing long Q-tips in various parts of her mouth. To someone not familiar with the process, it appeared the volunteer was playing charades, attempting to have me guess a movie about a chopstick tonsillectomy.

But the process was quick, easy and painless, leaving my hypochondriac nature without any ammunition. I taped up my swab samples to the card, sealed my envelope and said a prayer for Bonnie as I left the booth. Oh, and I returned home with the same number of kids with which I started the day.

Hilary, one of the coordinators for the drive, reports that there were 232 donors added to the bone marrow transplant registry that day. Betsy Berman (another coordinator) confirms that, yes, all her kids made it home with her husband that night.

Four messages from Bonnie

Bonnie is well, with four messages for friends and family:

1.) I'm bored. Bring projects! (Did anyone not do their taxes yet?)
2.) Come visit! (Just arrange it in advance.)
3.) Bring food! (I can't open another tin of hospital food. But please, no fresh fruits or vegetables.)
4.) Send messages! (I love it when the hospital delivers a big pile of messages each day!)

So, if you haven't sent a hospital message to Bonnie, click here.

By the way, Bonnie's neutrophil count is about the same as yesterday. (Click here if you want to learn more about "neutrophils.")

Random missive

Here's a hi-tech good luck cheer:

If you want to create your own, click here.

One month update: Getting There

Bonnie entered UCSF about a month ago when her leukemia relapsed. There were a few days of additional testing, then she began her chemotherapy on Tuesday, May 3rd, with the expectation she would be in the hospital about a month. Fourteen days after her chemotherapy began, there was initial testing that demonstrated the level of cancer cells in her blood had decreased -- a good sign.

Later, Bonnie had additional chemotherapy designed to "deepen" her remission when it became clear that a bone marrow transplant might take longer than expected to initiate due to lack of a match. Because of this additional chemo, Bonnie's stay in the hospital is a little longer than expected.

Because of the chemotherapy Bonnie's immune system is compromised. At this point Bonnie's physicians monitor her neutrophils -- her white blood cells-- and wait until they return to a level which can withstand everyday bacteria and infections. Today, Bonnie's neutrophil count is 20 and the minimum threshhold for discharge is 500. (A normal neutrophil count is between 4,000 and 8,000.) By watching her neutrophil count daily, we'll get a pretty good sense of when she will be heading home to Burlingame.

Once her neutrophil counts are back to 500, there will be a few additional days where, one-by-one, the various antibiotics that Bonnie is currently on, will be withdrawn. Once she is off these antibiotics, and hasn't presented any infections, she'll be cleared to go home. The current best guess for Bonnie's arrival in Burlingame is sometime this weekend.

Once Bonnie is home, we will wait about a week for her blood counts to stabilize, then she will have another bone marrow biopsy to see if she is in remission.

Bonnie is well. It's great that she hasn't had any infections over the last month (aside from her initial infection). Her most common complaint is that she is bored, and, of course, she's eager to go home.

"Save a Life This Sunday"

By now you likely know that Bonnie Tonneson is battling a relapse of leukemia, and a donor match is required to save her life. Jewish donor matches are urgently needed.

There is a bone marrow donation drive TODAY in San Francisco:

Sunday, June 5
10:00 AM - 6:00 PM
Israel in the Gardens, JFCS booth
Yerba Buena Gardens Festival
760 Howard Street (map)
San Francisco, CA 94103
415.449.1200

All that is required is a simple, painless, cheek swab test to determine if you might be a potential match for Bonnie.

Demystifying Bone Marrow Screening & Donation

I've received lots of emails from people who are nervous about the marrow donation process. There seems to be a conventional wisdom that the process is "scary," and while people are willing to go through the process for Bonnie, they're anxious about doing it for someone else.

I'm a "medical wimp" (who's married to a physician) and I encourage you to think of it as a two-step process. The first step is easy, and the second step is worth the effort, given the likelihood that you are saving someone's life:

Step 1: The screening process -- determining your HLA type -- is straightforward. "Gift of Life" uses a cotton swab to get a small sample of cells from inside your cheek. The National Marrow Donor Program takes a small blood sample.

Step 2: If your initial HLA type matches with Bonnie (or with someone else who needs a marrow donation), you will be contacted, and an additional screening is performed via blood sample. If you are a match, there are two ways the donation takes place:

1.) Peripheral Blood Stem Cell donation (PBSC). Today, the vast majority of donations happen via this technique. An IV is hooked up to your arm and stem cells are filtered out by a machine. This is very similar to platelet donation or dialysis.

2.) Bone Marrow Donation. This donation type was the prevalent technique in the past, but is used much less frequently today. Bone marrow is harvested from the pelvic bone using a needle and local anesthetic.

For both harvesting techniques, above, you are in and out of the hospital on the same day.

I've received a lot of nice emails publicizing "Save a Life This Sunday" for tomorrow's bone marrow donation drive in San Francisco (click here for details).

Spread the word: Upcoming marrow donation drives for Bonnie Tonneson

Bonnie is looking for friends and family to attend upcoming bone marrow donation drives to help her find a match for a bone marrow transplant required to cure her leukemia.

The following three "Gift of Life" drives are coming up shortly, and are focused on registering donors of Eastern European Jewish ethnicity:

- SF; Sunday June 5: 10a.m.-6p.m.
- Boston (Wayland); Sunday June 12: 10a.m.-1p.m.
- New York (Old Westbury); Sunday June 12: 9a.m.-2p.m.

Click here for more information. If you can't make any of these events, you can click here for a "do-it-at-home" kit. If you think it's unlikely that you're a match with Bonnie, you can also join the National Bone Marrow Registry by clicking here.

PLEASE PASS THIS MESSAGE ALONG TO FRIENDS & FAMILY BY CLICKING ON THE EMAIL ENVELOPE BELOW & ADDING YOUR OWN MESSAGE. THANKS!

Q & A with Mike

Q: I can't get Bonnie by phone. What is the best way to communicate with her?

A: Click here to send a message through the UCSF site. Your message will be printed out and delivered to her that day. This approach is most appropriate for now.

Q: Our child's cord blood is not in the National Registry, but instead is in a private cord blood registry bank. Should I get this blood tested? Can I donate part of that blood?

A: No, it does not make sense at this time. The likelihood of a match is very low, would not be of incremental benefit to Bonnie (in light of the other 20 potential matches found in the National Registry), and would require/deplete all of the cord blood from your child's sample.

Q: I'm not in SF, Boston, or NY, but want to donate marrow. What do I do?

A: If you have Eastern European Jewish ancestry, you can click here to have a "do-it-at-home" screening kit sent to you by "Gift of Life." Otherwise, you can click here to join the National Marrow Donor Registry, and be screened at a local hospital.

Note from Mike: 6/3 - Good News

All:

Some good news. The search of the national database of cord-blood donors has yielded approximately 20 potential matches for Bonnie on the required four markers for an umbilical cord blood transplant. We should be able to find a suitable donor from among these. More testing to follow. Will keep you informed.

In the meantime, as we have learned, nothing is a certainty in any of this. So, we are continuing to move forward with the live-donor testing in the coming weeks.

As a reminder, the following three "Gift of Life" drives are coming up very shortly, and are focused on registering donors of Eastern European Jewish ancestry:

- SF; Sunday June 5: 10a.m.-6p.m.
- Boston (Wayland); Sunday June 12: 10a.m.-1p.m.
- New York (Old Westbury); Sunday June 12: 9a.m.-2p.m.

Click here for more information about all three of the drives, above.

There has been a huge outpouring of support on the bone marrow donor drive front. Lots of folks are contacting their local temples to get the word out for higher participation in the local drives above, and are also making individual donations via local hospitals (click here) and/or the do-it-at-home donations that Gift Of Life provides for people of Eastern European Jewish ancestry (click here). (You may be asked for more information about Bonnie: her full name is Bonnie Kramer Tonneson, her physician is Dr. Charles Linker, and his fax number is: (415) 353-2467.)

More info to come as we get it. Thank you for your continued help and support. We are so grateful.

Best,

Mike

Great "Gift of Life" marrow donation story

From the "Gift of Life" site:

The Gift of Life Bone Marrow Foundation was established in 1991 as a donor recruitment organization to help save the life of New Jersey leukemia patient Jay Feinberg. Between 1991-1995, the organization launched an extensive campaign to recruit donors of Eastern-European Jewish ethnicity throughout North America and abroad.

Over the course of four years, nearly 60,000 donors were registered with the National Marrow Donor Program in the United States, as well as other national registries in Canada, Israel and South Africa. In 1995, the very last donor tested turned out to be Jay's match, and he was transplanted in Seattle at the Fred Hutchinson Cancer Research Center.

So, if you are a potential match of Bonnie, and are in San Francisco this weekend, or in the Boston or New York area the following weekend, click here for more details:

Gift of Life Donation Drives (SF, NY, Boston)

It would be nice to repeat Jay Feinberg's story.

I'm not in SF or NY but want to donate...

A number of people have contacted Michael or Bonnie, asking "I'd like to sign up for bone marrow donation, but don't live in San Francisco, New York, or Boston. How can I help?" There are two ways:

1.) If you are of Eastern European Jewish ethnicity (and can't make it to SF (6/5), NY (6/12), or Boston (6/12)), "Gift of Life" does have an online registration process, and with a donation of $18, will provide the materials for an in-home swab test. Here is the link:

Online registration and donations with "Gift of Life"

2.) Anyone can join the National Marrow Donor Program. For more information on how to join, here is the link:

How to Join the Registry

Of course, if you are in SF, Boston or NY over the next two weekends, and are a possible match for Bonnie, you can click here to learn more.

Good news: Matches for cord blood transplant

Bonnie appears to have potential matches for an umbilical-cord transplant. There are about 20 four-out-of-six HLA matches, which should yield a good candidate for transplant. It's still important, nonetheless, to motivate potential donors for bone marrow transplant.

If you haven't checked it out already, here is the link for some upcoming donation drives in Boston, New York and San Francisco. There's a premium for friends and family with Eastern European Jewish ancestry, as this sub-group presents the best potential match for Bonnie.

Note from Mike Tonneson: 6/1/05

Bonnie's Status:

• No donor matches found
• Will likely go to Minneapolis for chord-blood transplant
• Local donor drives in SF, NYC, Boston areas next two weekends.

All:

We have found out a lot of new info in the last 3-4 days. I will try to be brief.

Bonnie's sister is not a match.

Further, the results of the search process among the 8 million registered donors in the National Marrow Donor Registry did not yield even one match of 6 out of the first 6 markers, but rather a handful of almost-matches that UCSF will continue to pursue.

In all likelihood, we will be seeking the one remaining potential course of treatment: an umbilical chord-blood transplant. A search of that database is currently being conducted. The database is only 30,000 donors. However, the chances of finding a match are very good, as only four markers are required for this procedure (v. 10 markers for the live-donor approach). Fewer are acceptable because of the following: with live-donor the biggest threat is graft v. host disease wherein the donor's immune system does not recognize Bonnie's organs, cells, etc. so can potentially attack them. With newborn blood, the immune system would be very immature so would not have had a chance to develop the "ability" to know what to attack.

Assuming a match is found in the cord-blood registry in the coming days, we are likely headed to Minneapolis (University of Minn., Fairview Hospital), which is the worldwide leading/pioneering center of excellence for chord-blood transplants. It will mean roughly 120 days there. ....More on this in the coming days as we get more results and the decision on treatment and venue gets made.

Separately, and in parallel, we are encouraging friends and family of Eastern European Jewish ethnic ancestry to part pâté in a donor drive. As you might have inferred, this is the on-in-a-million backup approach now, but one that is clearly worth pursuing in light of the rapidly evolving situation we face. Time is of the essence, so while we will not be organizing a separate drive for Bonnie per se, we will be piggy-backing three previously scheduled drives that were organized in the name of others specifically in need of an Eastern European Jewish donor.

Please recognize that the likelihood of an individual participating, getting testing, and then matching both Bonnie ***and*** the person for whom the targeted drive was originally organized is so infinitesimally small as to not even be an issue at all. So, there is no need to be concerned with trying to designate yourself as a donor for Bonnie only.

Instead, we are encouraging friends and family of Eastern European Jewish ancestry to simply get tested if they can, and thereby get registered in the National Registry. The process is simply a cheek swab-- which will provide the data on the first six markers. Were they to match Bonnie, you would then later be asked to provide a blood sample to check for the incremental four markers for the total ten-marker match. If all ten match, the process of actually donating one's bone marrow (or more accurately, one's bone marrow stem cells that circulate in one's bloodstream) involves a non-invasive procedure very much analogous to donating platelets at a blood donor center.

These three drives are as follows:

City, Date and Time for bone marrow registration

• San Francisco; Sunday June 5: 10a.m-6p.m.
• Boston (Wayland); Sunday June 12: 10a.m.-1p.m.
• New York (Old Westbury); Sunday June 12: 9a.m.-2p.m

Click here for more information about all three of the drives, above.

Thanks, in advance, for any help you can provide on this front -- including donating as applicable, but also in terms of passing this note -- or the link to this blog address (www.bonnietonneson.blogspot.com) -- on to others who know Bonnie, as well.

....More to come in the next few days. Thank you so much for your continued support on so many fronts.

Sincerely,

Mike

NOTE: You can send this post to a friend by clicking on the email envelope, below. Please send it to friends of Bonnie or friends of yours of Eastern European Jewish ethnic ancestry. They may be the miracle match!

Kristen Hege's "sympathy" haircut

Charlie, "The Burlingame Barber" stopped by and saw Bonnie again on Tuesday night, and apparently Bonnie's head is now absolutely clean-shaven. One of Kristen's physicians, Kristen Hege, got this "sympathy cut." (Apparently, Charlie has a few openings on her schedule if you're interested in a free haircut.)

Cord blood transplant 101

I'm sure Bonnie and Michael have been navigating the learning curve for umbilical cord blood transplants. Here are some things I learned:

- There have been about 4000 cord blood transplants in this country, the majority of which have been for children. Umbilical cord blood is collected from the umbilical cord at the time of delivery and is a rich source of hematopoietic stem cells - the cells that give rise to all of the cells in the blood as well as the immune system. A number of different blood banks around the country and the world have now established large banks of frozen cord bloods that can be used to perform stem cell transplants. There is an increasing body of positive data, initally in children, and more recently in adults.
- Adults were not early candidates for cord blood transplants because the total number of stem cells in a single cord blood collection is low (about 10-fold lower than a typical stem cell collection in an adult). Children, with smaller body weights, were better candidates for the initial studies as they did not need as many stem cells to repopulate their smaller bone marrows. The fact that Bonnie is a relatively petite adult is in her favor here.
- In the last few years, transplant centers have "pooled" the stem cells from two different umbilical cords in order to get the volume of stem cells required for heavier adults, with positive results. Pooling cord blood presents more risk of graft v. host disease but may improve engraftment. (See below to understand these concepts better).

The advantages of umbilical cord transplants are:

- an easier match. For umbilical cord blood transplants only 4 of 6 HLA markers need to match, v. 6 of 6 for unrelated bone marrow transplants from the national registry.
- less risk of graft v. host disease. This is a common and potentially serious complication of bone marrow transplants, where the newly developing immune cells "the graft" attack the patient's body as foreign "the host". Most commonly the immune cells attack the skin, the gut, and the liver and require that the patient be treated with additional immune suppressant drugs to alleviate the symptoms. This is less prevalent with cord blood transplants, as the immune cells are more "immunologically naive," meaning that they haven't been exposed to all of the immune stimuli that an adult immune system has seen and, therefore, are less reactive.
- much less risk from CMV. CMV is a common virus that most people carry (like chicken pox). While CMV doesn't cause any problems in healthy adults it can cause serious infections in patients undergoing transplants (given that their immune systems are weakened) if either the patient or the donor carry CMV (ie. are CMV+). Bonnie is CMV-negative (a nice piece of good luck for her) and the CMV virus is much less prevalent in cord blood.

The downside to umbilical cord transplants is:

- slower "engraftment". This is the process where the new stem cells grow and mature into the patient's new immune system (the old immune system is ablated by the chemotherapy and radiation given prior to the bone marrow transplant). With cord blood transplants, this process takes longer, which means the patient has a compromised immune system for a longer time, making them more susceptible to infections during the first 100 days following the transplant.

Overall, the positive news for me is that there is increasingly positive data that suggests that the results of cord blood transplants in adults (even those performed with less than perfect matches) are now comparable to the results from the more common fully matched unrelated bone marrow transplants.

Here is a good reference within the National Marrow Donor Program, for those who are ready for "Umbilical Cord Transplants: 202":

NMDP Patient Fact Sheet: Umbilical Cord Transplants

Bonnie's head-shaving party

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Here's a photo from early last week, along with a note from Charlie:

Isn't she beautiful? We did offer to shave our heads, but Bonnie didn't take us up on it!

- Charlie

To see more photos from of the "head-shaving party", click here.