Saturday, July 30, 2005

New Visitor Reminders

We are up to about seventy-five visits a day, which means there are some new visitors out there. I want to point out three things, all found in the right-margin of this page:

1.) There is a "To Email Bonnie" button in the right margin of the page, towards the top. Just click on the text and you will find yourself writing an email to Bonnie. Write it, then hit send. (For now, you can just click here to send an email to her.)

2.) Towards the bottom of the right-margin of this page are some small buttons. One of them is "Add to My Yahoo". "My Yahoo" is a personalized home page where you can set up "feeds" from different sites on the web. If you set up a "My Yahoo" page -- go to Yahoo.com -- and click the "Add to My Yahoo" button, you'll always know when there is a new post without having to visit the blog (and remembering its hopelessly complicated url).

3.) You can click on any photos on the right margin, and you will be taken to a site where you can see all the photos in a larger format.

I suppose the fourth thing you should know is that I definitely appreciate anyone clicking the "Comments" button below the post, which allows you to post a comment that I can read. It's a way to start an online conversation -- kind of like someone raising their hand and asking a question at a conference. The "speaker" appreciates this.

Last, you can always email me at gbiddle616@yahoo.com or simply click here and I will post any comments or news that you have about Bonnie, Mike, Isabel or Devon.

Friday, July 29, 2005

Update on Bonnie from Michelle Ebersman

Here is a note from my favorite blogger, Michelle Ebersman:

I spoke to Bonnie and she sounds much better today
than she did yesterday. Yesterday she was really
nauseous but today the nausea was gone so she is back
to being a real trooper. Tomorrow she will have a
break from treatment. She wanted me to pass on her
fax number: 612-273-1158. People need to clearly mark
that it is a patient fax and put her name and room
number (218) on it. She was online earlier but the
hospital internet service is down.

Michelle


Keep those cards and letters coming.

Bon has email; video conferencing coming

Here is a note from Mike:

See others' past blog postings for mailing address and phone number. No cell phones allowed on the Leukemia floor, so if you call her cell, you will simply hear Bonnie's VM instructions to call her room number (612 273 0202).

We got Bonnie up and running with a broadband connection in her hospital room just a few minutes ago. She has a laptop in bed, so email is pretty convenient for her. Email is the preferred communication method for now. Her email address is the same as always: btonneson@yahoo.com.

We have also outfitted her laptop and our home computer with video conferencing (webcam) capabilities (courtesy of the Dartmouth AD clan), so will be conducting daily video-conferences between Bonnie in MN -- and Isabel, Devon, and me in CA. Once we have that up and running I will post some instructions on the blog RE how others can do a videoconference (from their PCs) with Bonnie in her room. The technology has really gotten to the point where it is super simple.

...More to follow.

Mike

Just as soon as Mike mentioned technology was super simple, his post didn't make it on to the blog directly -- despite his best efforts and doing exactly what is required -- so I just "nudged" it to make it appear on the blog.

More ways to help: fundraising

Here is a note from Hilary Somorjai who is coordinating a fundraising effort.
"The committee" is organizing a fundraiser on the Tonneson's behalf on Sept 16 at the Bligh residence. We are trying to get food and alcohol donations plus we want to do a silent auction so if anyone wants to donate something, they can contact the following individuals:

Food: Alicia Sanguinetti
aliciadelgrande@sbcglobal.net or
click here to send an email directly


Alcohol: Charlie Hays
Charlene_hays@yahoo.com, or
click here to send an email directly


Silent Auction items: Hilary Somorjai
hil5000@yahoo.com, or
click here to send an email directly


I will keep you posted, but thanks again for all of your hard work and congrats on the job.

Hilary


I think I can make this event -- looking forward to it.

Another tiny update...

Well, it's day -5, with five days to go before day zero and the advent of Bonnie's new immune system. For most transplant patients, day zero becomes their new birthday. Presumably, Bonnie is having full body radiation treatments and is feeling miserable. In a day or two, she will begin taking aggressive chemotherapy treatments, as well.

I talked with Mike who was back in Burlingame and he sounded well, and will be heading back to MN soon. There were a bunch of his family members in the background. Life goes on.

If you haven't done it, jot off a note or card to Bonnie at:


Bonnie Tonneson
Fairview University Hospital
PCU 4B Room #218
500 Delaware St. SE
Minneapolis, MN 55455

Or, for those who dare to call:

Room phone: 612-273-0202

Thanks so much for the many emails in response to my "Everything You Ever Wanted to Know About Bone Marrow Transplant But Were Afraid to Ask" post. (Click here if you haven't read it.) Super bonus points to those who dared to post a comment -- you're part of the blogosphere now! Michael wasn't surprised when I told him about the traffic spike and email responses. Lots of enquiring minds out there. Go Bonnie!

Thursday, July 28, 2005

Bonnie's new contact info...

Here is a note from Charlene Hays:

I spoke to Bonnie this morning, and she is in good
spirits but says she feels like she's "been thrown
against a wall". She's powering through, though.

Her new contact info, which she said can be put on the
blog, is:

Room phone: 612-273-0202
Address:
Bonnie Tonneson
Fairview University Hospital
PCU 4B Room #218
500 Delaware St. SE
Minneapolis, MN 55455

She hasn't set up her computer yet, and prefers to get
letters in the mail- gives her something to look
forward to. She still cannot have any live plants or
flowers, nor can she have down (don't know why anyone
would send that, but just in case)...

Thanks!
Charlie


I'm sure Bonnie would appreciate notes, cards and letters. Thanks for the post, Charlie.

Wednesday, July 27, 2005

Blogger Michelle checking in...

Michelle Ebersman had fleeting contact with Bonnie today. Here's her report:

I spoke to Bonnie for 5 seconds today as she was
going into surgery to get her catheter put in. She was
amazingly cheerful. She has her room phone and wanted
me to pass it on:

612-273-0202

-Michelle

Thanks, Michelle, for the update.

Tuesday, July 26, 2005

Everything you ever wanted to know...

...about cord blood transplant, but were afraid to ask.

I had the benefit of a 12-hour drive recently with our medical editor, Kristen Hege, and I will now take my best shot at putting Bonnie’s treatment into perspective using layperson’s terms. With luck, it will read like a powerful story of good and evil along with the twists and turns that Spielberg presents in Star Wars. (Darth Vader is Luke’s father?) Or, it could be overwhelmingly boring. You decide.

First, some basic terms. Stem cells are cells that replicate themselves, but also create the basics of the immune system: white blood cells, red blood cells and platelets. White blood cells form a basic tenet of the immune system, red blood cells carry oxygen, and platelets allow clotting when you are cut or bruised. The real key here is “drilling down” into the component pieces of white blood cells: Neutrophils, the basic first line defense against everyday bacteria, lymphocytes, which are comprised of T-cells and B-cells - the soldiers who fight more heavy-duty infections -- and monocytes, the front-line infantry soldiers who signal t-cells to come to the rescue and serve as general garbage collectors in the blood.

Recall, that Bonnie has Acute Lymphoblastic Leukemia, which means that her lymphocytes have gotten out of control, creating a mass of infant lymphocytes in her system which fail to develop into infection-fighting cells, and replicate themselves over and over, essentially clogging up her system to the extent that she is overwhelmed with white blood cells that “crowd” the red blood cells and platelets, and no longer serve as an effective system. Recognize, too, that Bonnie’s immune system "sees" these renegade lymphocyte cells as “self” and thus does not attack them. This is what cancer is all about – renegade cells that grow and replicate themselves incredibly quickly but that the body’s immune system does not “see” as the enemy, thus the cells grow unchecked.

Two years ago, as a first step in irradicating her disease, Bonnie had aggressive chemotherapy which killed the fast-growing leukemia cells – the out of control “infant” lymphocytes. Eighteen months later, however, Bonnie relapsed which means there were still some remnant leukemia cells that managed to replicate themselves, and again, overwhelmed her system. With chemotherapy two months ago, she got back into remission, but at this point, without further treatment, it is a certainty that the leukemia cells will advance again, and this time it will happen in much less time than 18 months. Chemo alone is not an effective strategy for her leukemia cells anymore.

So, beginning tomorrow, Bonnie will have even more aggressive therapy, which is designed to eradicate the leukemia cells, but, as a side effect, will also eliminate her stem cells and the corresponding elements of her immune system. Hence the need for a bone marrow transplant-- she will receive a “new” immune system via transfusion of stem cells from the two new cord blood units. Beginning tomorrow, Bonnie will have total body irradiation, followed by very aggressive chemotherapy treatment. It will be much more aggressive treatment than her past two rounds of chemotherapy and the toxicity of the treatment will kill (almost) all of the leukemia cells (the infant lymphocytes who refused to develop into functioning cells) and (almost) all of her T-cells. (The “almost” phraseology is important to remember later.) The total body irradiation and high levels of chemotherapy will also create a toxic nightmare for Bonnie’s gut, liver and kidneys, as well as other organs, and the net effect is that Bonnie will be miserable – far worse than the last two rounds of chemotherapy.

This brings us to the cord blood transplant. The goal of this transplant is to get a few stem cells from the cord blood to Bonnie’s bone marrow, which will “trigger” replication of the stem cells, and creation of the white blood cells and their legion of functioning lymphocytes (T-cells and B-cells), neutrophils, red blood cells, and platelets. In a sense, this process is a lot like sperm cells finding an egg – it only takes a few stem cells to enter her bone marrow and kick-start the process of developing a new immune system. If this process works – the stem cells find the bone marrow -- you have engraftment, and four to five weeks out, you will see signals of this “new” immune system via blood tests that first show the presence of neutrophils, hence the constant focus on Bonnie’s “neut” counts. Eventually, at week four or five Bonnie’s neutrophil count should climb to 500 or so, which is the criterion for her leaving the hospital. At this point her neutrophils will provide a front line defense against basic bacteria and fungus infections.

Recognize, however, that during these four to five weeks post-transplant, Bonnie will have no immune system. So in this battle of good and evil, you have all sorts of normal bacteria, fungi, and viruses that our systems confront successfully everyday, but Bonnie’s system can not. Bonnie’s physicians in MN will not only manage the toxicity presented to her vital organs (gut, liver, kidneys) but will also be on the lookout for any infections. They will treat Bonnie prophylactically with many antibiotics, but will also add more to her regimen if any infections are discovered.

Now we get to the interesting part – the cord blood transplant. The downside of cord blood transplants is that the stem cells found in cord blood (v. adult stem cells) are very quiescent – it takes a lot more time for the process of replication to begin, and this replication takes much longer. Thus, the window for infection is four or five weeks v. two to three weeks via an adult stem cell transplant. On the positive side these stem cells are not as mature, and are therefore more “flexible” in reacting to a new host and therefore less likely to cause graft-vs-host-disease (more below). The net result is that the odds of engraftment are lower (~ 5-10% chance that the stem cells won't engraft), and the process takes longer, increasing the risk of infection.

So far we have a couple of issues: managing toxicity presented to Bonnie’s organs, watching carefully for signs of infections, and patiently waiting for engraftment to occur. There are a couple of other “battles” being fought, however. Earlier I stressed that (almost) all of Bonnie’s leukemia cells were eliminated, and (almost) all of her t-cells (the heavy duty infection fighters) were eliminated by radiation and chemotherapy.

There are a few remnants of leukemia cells and T-cells, however. The expectation is that T-cells from the cord blood transplant will “see” the leukemia cells, and unlike Bonnie’s current immune system, will clearly label these cells as the enemy, and eliminate them, so beyond “mopping up” these remnant leukemia cells with more aggressive chemotherapy and radiation, the “new” immune system will be the third approach to killing the renegade leukemia cells. Notice, too, that (almost) all of Bonnie’s T-cells were killed. The reality is that there are a few of Bonnie’s T-cells that will survive and they will be fighting the invasion of the new stem cells, as they are clearly foreign invaders. (Think of a last few guerilla fighters hiding behind stone walls taking potshots as the new army arrives.) If these T-cells are effective sharpshooters, there is a risk that none of the new stem cells will get through to the bone marrow and engraftment will not occur. The reason that there are two cord blood units being transplanted is to allow a high enough number of stem cells to hopefully overwhelm the T-cell sharphooters and increase the odds that a few brave stem cells will eventually find Bonnie’s bone marrow and begin the replication process.

The plot thickens when you think of two foreign armies arriving via two separate cord blood transplants. Not only are these two new armies fighting the remnant leukemia cells, fighting Bonnie’s last T-cell sharpshooters, but they are fighting each other, as well. Recall that not only was there a requirement that these two stem cells “match” Bonnie (to avoid total rejection) but they needed to have some degree of match with each other, which is intended to minimize the amount of “fighting” between these two separate “armies.”

This brings me to the last concept, which is called “graft v. host disease.” Simply put, this occurs when the new immune system takes hold and begins to “see” many elements of Bonnie’s body as “foreign” and thus begins an immune response trying to vanquish these seemingly foreign elements. To some degree, this phenomenon is wanted, as it fuels the “death” of the remnant leukemia cells and Bonnie’s remnant T-cells. But too much of this aggressive behavior provokes rashes, diarrhea, and liver damage, and again, makes Bonnie feel miserable. The expectation over time is that the new immune system retrains itself to see Bonnie as “self” but this “wiring” takes time. The net effect is that for at least six months after the transplant (and up to a few years if she actually gets significant graft-vs-host disease), Bonnie will be on immune suppressants that “tone down” this wayward immune response until the new immune system sufficiently retrains itself. Recognize that a positive side effect of cord blood transplant is that given that the new stem cells are relatively immature, they are more adaptable, which means that graft v. host disease is less prevalent with cord blood transplants.

If I dare to give an executive summary, this is it:
-Total body radiation and aggressive chemotherapy will do the best job possible to devastate Bonnie’s leukemia cells, but will also eliminate her stem cells and current immune system.
-Consequently, Bonnie needs a new immune system, which is delivered via stem cells from cord blood that hopefully will find her bone marrow, and will begin a replication process.
-For four to five weeks, Bonnie will have no immune system. Her physicians will monitor for infections carefully, and will do their best to manage the toxicity presented to her vital organs.
-At four to five weeks, Bonnie’s neutrophil count will go up, indicating the existence of a “new” immune system – engraftment will have occurred.
-Her physicians will carefully monitor graft v. host disease. To some degree this phenomenon is wanted as it will help eliminate the remnant leukemia cells. If her new system is overaggressive, however, it will fight other elements of Bonnie’s body and consequently, Bonnie will take immunosuppressants to “mellow” this affect. This will be managed for months to years until Bonnie’s new immune system sufficiently retrains itself to see Bonnie as “self.”

Ok, not as compelling as a Spielberg movie, but I hope you get the gist of this. Send me an email or post a comment below if you managed to get through all of this and found it helpful.

Lance Armstrong's New fight

If anyone hasn't read it, Lance Armstrong's book, "It's Not About the Bike" has become the bible for cancer survivors. I figured a quick note about him would be timely after he recently won his seventh Tour de France and is now moving on to fight cancer -- an even tougher fight.

At one point Lance was downhearted about his testicular cancer, his prospect for survival, and the potential for his return to competitive cycling. His urologist, Jim Reeves, told him about an ancient Chinese belief that when a person is held in the hearts and minds and souls of so many other people, they can do better. Jim Reeves was convinced that Lance would do better because of the outreach and support of so many people.

Today, Lance extends that sentiment to his success in the Tour de France. "There's been a little of that phenomenon -- the outreach and support-- on the roadsides at the Tour. I have to think so because this race is too hard to win once: too many obstacles, too many problems, accidents, illnesses, other guys get better, you get lazy, you have a bad day -- I've just never had too many bad days -- and perhaps that's because I've got this army behind me."

I guess it's just nice to think that in the tradition of the ancient Chinese belief, by worrying about Bonnie, by thinking about her, we can help Bonnie as she begins "Day -7" tomorrow.

Sunday, July 24, 2005

Bonnie, Mike, Isabel and Devon in MN

Kristen talked to Bonnie on Saturday morning. She, Mike, Isabel and Devon were all sitting in a master bed in a hotel across from Bonnie's hospital in Minneapolis. They were sharing a Starbuck's breakfast of bear-claws and croissants and various flavors of coffee and hot chocolate. Bonnie was looking forward to exploring Minneapolis through Tuesday as a family, at which point Mike and the kids will head back to Burlingame for a few days, then return as a family a few days later for the month of August.

All of Bonnie's tests have been successful, so she will be admitted to the hospital next Wednesday. This will be day "negative 7", seven days before her cord blood transplant on the following Wednesday. Beginning this Wednesday, Bonnie will begin total body irradiation, and a few days later, she will begin chemotherapy. This is all part of a pre-transplant regimen designed to irradicate Bonnie's leukemia cells (the cancer) and, as a side effect, will also destroy her immune system, which is the reason she will recieve a stem cell transplant in order to establish a "new" immune system.

On day "Zero" Bonnie will receive two cord blood units via an IV transfusion, and then we will wait four or five weeks to see if her neutrophil count returns to a normal level, at which point she will be discharged from the hospital. Over these first four or five weeks there will be a constant battle of opposing forces. Given that Bonnie will have no immune system, the physicians will monitor her for signs of infection very carefully, and if there is any infection, she will get escalating doses of various antibiotics. The chemotherapy and total body irradiation will also cause toxicity to cells beyond her leukemia cells; her liver and kidney will be challenged, among other organs, and many fast-growing cells beyond the leukemia cells will be damaged -- the cell wall of her intestine, for instance. The net effect is that she will be miserable. More miserable than past rounds of chemotherapy, as this is the "deepest" treatment, especially as this is the first time she has had total body irradiation.

With luck, somewhere between day 28 and day 35, Bonnie's "new" immune system will signal its presence through positive neutrophil counts -- a signal that the new stem cells have given birth to a "new" immune system, with white blood cells that are pumping out neutrophils to guard against basic bacteria and infections.

When her neutrophil count is 500, Bonnie will leave the hospital and go to a nearby apartment building where she will be until day 100, when she will be allowed to return to Burlingame.

Thursday, July 21, 2005

Last Chance for Bonnie's Photo Poster!

For those who aren't aware, we're building a few photo posters of friends and family for Bonnie's hospital room. Here is a sample of some of the photos:




If you haven't sent a photo of you, your family, or any old photos of Michael, Bonnie, Devon or Isabel, this is your last chance! Just send a horizontal format photo to me at gbidle616@yahoo.com, or simply click here and attach a photo.

Over 3,000 visitors!

Well, it's that time again. Time to celebrate 3,000 visitors who care about Bonnie. That's right,

3 of the wrong colornO parking0One Digit / 0

visitors who care about Bonnie.

As for the Internet titans out there who like to give me grief about this seemingly small number, I want to let you all know that I am now VP of Product Management at Netflix, delivering a site to 3,000,000 subscribers. So, if you have any feedback, good or bad, about the site, either "Bonnie's Blog" or Netflix.com, please pass it on to me. You can send me an email at gbiddle@netflix.com, or simply click here. And for those folks who are really cool, I appreciate you leaving a comment by clicking on the word "Comment" below.

Thanks for visiting "Bonnie's Blog."

Note from Mike: 7/21/05

All:

First, an apology. We have been a little overwhelmed, to put it mildly, so it has been quite some time since my last email blast.

For those who have been logging on to "Bonnie's Blog", much of this email will be old news. For those who have not, please do log in to that site going forward, as, due to some of the technical hurdles with keeping people informed via a massive 400-plus-name email list, I will need to rely exclusively on the blog site going forward. (Thank you, blogmaster, Gib Biddle.)

I'll do my best to hit the highlights only.

We had great turnouts in our June drives for bone marrow testing in SF, Boston, and New York, as well as individual tests sent in from all over the country. They did not yield any bone marrow matches for Bonnie. Nonetheless, we truly appreciate the amazing outpouring of support.

It forced our hand with the umbilical cord-blood transplant. But that is OK. We are very bullish on the potential of this new stem-cell technology/protocol.

We have had lots of ups and downs on this front too. We were under the impression that there were 22 potential(4 out of 6 marker) matches and that it would merely be a formality to pick the best two among those for Bonnie.(Two cords will provide more than the requisite number of stem cells for Bonnie's body chemistry and body mass). Instead, we focused on the key criterion for acceptance to the program: that Bonnie be in 100% complete remission coming out of the induction phase of chemo she had just finished at the end of June. All the test results confirmed that, so were quite bullish heading into the initial visit (by Bonnie, Bonnie's Dad, and me) to Minneapolis July 5th and 6th. However, the key finding/result of that meeting was that there was no definitive match(es), and we were yet again in a holding pattern. The two cords of focus were acceptable matches for Bonnie, but were not sufficiently compatible with each other. This was a big letdown, as we were not expecting that to be an issue at all.

However, two alternative cords (of the original 22) were found to be acceptable on all counts. That has now been confirmed and re-confirmed. So, we are in very good shape with respect to the cords and with respect to Bonnie being in remission.

Based on that, Bonnie has been accepted to the program in Minneapolis. The two of us flew there on Sunday, July 17. Bonnie is currently spending a full week undergoing standard pre-admission outpatient testing (EKG, X-ray, CT-scan, Bone Marrow Biopsy, Lumbar Puncture - aka Spinal Tap, etc -- all of which have been normal, including the Bone Marrow Biopsy results which came back an hour ago, Thu afternoon, again confirming she is 100% in remission). She will be admitted inpatient Wed, July 27, and will then spend 7-8 days receiving pre-transplant treatments. These include several days of heavy-dose chemo-therapy (10x stronger than anything she has received to date) and 4 days of total body irradiation. The objective is to wipe the slate blank -- to kill all her bone marrow cells, both good (normal cells) and bad (Leukemia-based). This will enable her to receive and adopt the new immune system from the stem cells in the cord blood.

The transplant is currently scheduled for Thu, Aug 4. The transplant itself will be anything but dramatic, as it will involves a non-invasive procedure consisting of an IV transfusion of something on the order of 4-6 ounces of fluid comprising the cord blood from the two donor cords.

What follows is a 100-day requisite stay which is perfectly analogous to the live-donor procedure I described in a past email. The first 30-45 days will be inpatient. Managing Graft v. Host (GVH) will be the focus, along with avoiding any infection during the initial 21-30 days, during which she will not have any functioning immune system whatsoever. The ensuing 70 days will be outpatient and will include daily visits to the clinic and 24-hour chaperoning by a rotating chaperone (friends and relatives). Bonnie and her chaperone will live in a suite/apt. within a short drive of the hospital.

Meanwhile, I will be taking Isabel and Devon to see Bonnie for a 4-day weekend starting tomorrow, Fri, before Bonnie checks in to the hospital. This will give us a chance to spend a treatment-free testing-free neutropenia-free weekend together. I'll then return with the girls, who will have CA as their home base throughout the Minneapolis protocol -- with the one exception of the last 10 days of August, when the girls, our nanny (and, now, adopted family member, Bobbi Jo), and I will live in Minneapolis. Visits by the girls(as long as they are healthy) will be allowed under the MN protocol -- throughout the entire 4 months; we're tickled pink on that score,
needless to say. In the interim, and for the balance of the 4 month stay, I will go back and forth each week -- to be with Bonnie, and to provide continuity for the girls. (Girls will join me for a few long weekends in Sept and Oct).

...Oh yes, separately, Bonnie had a complication. Bonnie had an inflamed gall bladder, a likely side-effect of the chemo over the last two years. Rather than risk infection post-transplant, the doctors at UCSF opted to have it removed. That procedure was done laparoscopically 3 weeks ago. In and out in one morning. Three days of recovery marked by only mild discomfort. It was done after the completion of chemo at UCSF and before our initial consultation in Minneapolis July 5.

Bonnie will have a laptop in MN, and will be on broadband in her room, so will be reachable via email. More on that and a mailing address once she checks in next Wed.

Meals continue to come 3 days a week. Again thank you so much to those who have helped on this front.

A special thank to so many of you who have helped out on other fronts -- with the girls' playdates and rides, coordinating the donor drives, sending notes and gifts, helping with germ-free travel, etc., etc., etc. I cannot say this enough times -- we truly are humbled. We are staying sane (with a few notable exceptions -- mostly on my part), focused and strong because of the overwhelming support all of you have, and continue to provide us. Thank you so much. We truly appreciate it.

...More info to follow. But, on the blog (http://bonnietonneson.blogspot.com/), rather than via email, from here on out. More frequent and timely updates. Less verbosity. I promise.

Sincerely,
Mike

Wednesday, July 20, 2005

Awaiting bone marrow biopsy results

Not much to report, except Bonnie did have another bone marrow biopsy to confirm that she is in remission. It tends to take a few days to get the results, but this is one of the standard intake tests performed before a patient is admitted to the hospital.

Tuesday, July 19, 2005

Tiny update

Heard from Bonnie, and she had her intake meeting with her physician in Minneapolis. The main issue was for her to decide which research protocol she would follow. One protocol transfers the cord blood through an IV, while a new protocol would inject the cord blood samples into her hip using a hypodermic needle. Bonnie would be the first patient for the new protocol, and I believe there was consensus among her physicians that she would use the "tried and true" approach of doing the transplant via an IV. This will happen in early August, if all goes according to schedule.

Sunday, July 17, 2005

Dire Straits in Minneapolis

OK, now that I've got your attention, I want to let you know that Michael and Bonnie flew to Minneapolis today, and actually went to a Dire Straits concert. Seems they got there, and things were a bit boring, so they looked around and discovered Dire Straits was in town and that they could actually buy tickets. Imagine a kid-free evening and going to a concert together-- how nineties.

Bonnie starts a series of outpatient tests tomorrow (Monday), and Michael is there until Tuesday, at which point he returns to Burlingame, then heads back to MN with Isabel and Devon in-tow on Thursday. Bonnie has Friday, Saturday, and Sunday free, so they will do something together as a family next weekend, and then Bonnie will be admitted on Tuesday (a week from this Tuesday).

Bonnie and Michael are staying in St. Paul as there are no rooms available in Minneapolis. Apparently Minneapolis is full of forty year-old kid-free couples as Dire Straits is a pretty big draw. By late this week, Bonnie's hospital-affiliated apartment should open up, so she'll be able to move into downtown Minneapolis soon.

Sunday A.M.: Bonnie off to the airport

Here's a first -- a blogging chauffeur. Alicia drove Bonnie and Michael to the airport this morning and here is her report:

Good Morning!

I just drove Mike and Bonnie to the airport this morning. I wanted to let everyone know that they were in good spirits… they are so incredibly brave. As usual, Bonnie looked amazing… she always looks so darn CHIC!! We had a good chat in the car and she was fired up to hear about the good article on her blog, with the encouraging and positive results of adults receiving cord blood transplants.

Mike is going to be with her for a few days in Minnesota and then return home on Tuesday or Wednesday. Friday he will take the girls out there to visit their Mom for a long weekend.


More later -- thanks Alicia.

Saturday, July 16, 2005

Good article on Cord Blood Transplant

In about two weeks, Bonnie will receive a transfusion of two cord blood units, which constitutes the cord blood transplant. By clicking here you can read a good layperson's article about cord blood transplants and their effectiveness. It's pretty encouraging.

Many thanks to Dan Stone who has been providing me with a weekly feed of good online news clippings focused on leukemia.

Friday, July 15, 2005

Last chance for the Bonnie Photo Poster



This is it! This is the last chance for photos for the "Bonnie Photo Poster Project." Please send a horizontal format photo to me by clicking here, or sending an email to gbiddle616@yahoo.com. Bonnie heads off to MN this Sunday for a week of outpatient testing, then will enter the hospital for a week of chemo and radiation, and after the transplant will be in the hospital for three months. If you send me a photo, it will be part of the poster collage for Bonnie's hospital room.

Thanks to all who have sent me photos already!

Happy Birthday Bonnie!

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If you can't read this it says, "Happy BDay Bon!" And if you look at the post below, you'll see Bonnie has already received matching cord blood units -- the gift of life -- for her birthday, which is pretty cool. I'm sure, however, Bonnie would appreciate a birthday email before she heads off to Minneapolis this Sunday. Just click here to send her an email. (Bonnie's email address is btonneson@yahoo.com)

Off to Minneapolis this Sunday!

It's official. Bonnie does have two cord blood matches, and they are compatible with each other, as well. Bonnie and Michael will fly to Minneapolis this Sunday, and Bonnie will go through outpatient testing and intake for a week, then will go into the hospital for a week of pre-transplant chemotherapy and total body radiation, then will have the transfusion -- the cord blood transplant-- in early August.

Presumably Michael will be back in Burlingame sometime next week, but then turn around a bit later to take the girls back to Minneapolois. They all plan to be there for the month of August. Bonnie will be free to go after three months.

Tuesday, July 12, 2005

Timing update...

There is preliminary news that Bonnie has two matching (and compatible) cord blood samples. This will be confirmed on Thursday or Friday of this week. If things are a "go" late this week, Bonnie will arrive in MN on the 18th, will begin chemotherapy consolidation after a few days of testing, and will likely have the transplant on the first of August.

Recent cocktail party for Bonnie

One of our guest bloggers, Stacey Keare, recently hosted a cocktail party for Bonnie. By all accounts, there were four, 'count 'em four, wonderful toasts from Michael, and more tears than a Zales family reunion.




Thanks for the photos, Stacey. To see full size photos, simply click on any of the photos on the right margin of this page.

Good luck with the "Bow and Arrow" Test

This is a first-hand account from Marty Blue about a recent bone marrow drive in Wayland, MA. Marty went to Tuck for business school (where Mike went) and is married to Jeff Blue (who was a classmate of Mike and me at Tuck). As Marty was leaving to be tested, one of her three daughters yelled "Good luck with the Bow and Arrow test." Read on for more details:

When Jeff and I received Mike's email about Bonnie needing a Bone Marrow transplant and learned that her best chance to match was with someone of Eastern European Jewish decent we automatically agreed that I should be tested given that's my background. We have been closely following Bonnie's progress and have wished we could do more to help. However, being on the East Coast that has been difficult. It was so nice to be able to do something that could help them, or maybe even somebody else.

Mike quickly followed up with an email on the blood marrow donor drive that was being conducted in Wayland, MA which made the whole progress that much more simple. I contacted many friends to ask if they too would be willing to be tested. I was amazed at how many have already been tested and thus are already in the donor network. For those who could not make it to Wayland, some went ahead and received testing kits via The Gift Of Life web site although from what I have heard this seemed to be slightly more complicated.

The donor drive in Wayland was organized as part of a Bat Mitzvah project. Most synagogues encourage all Bar and Bat Mitzvahs to participate in some type of Community Service around their 13th birthday. This particular project seems to be extremely effective and we hope to co-opt the idea when our eldest has her Bat Mitzvah.

When I arrived I was pleased to see a steady stream of participants. The process was quite simple. Participants are first asked to fill out forms and to read material which describes the process if you are a match. Gift of Life is very careful to make sure that participants understand that if you are willing to be tested that you would be willing to go ahead and donate if you are a match for someone. All materials stress that it is a 'significant commitment' and strive to make donors well informed about what the donor process involves. The goal is to make sure that if someone is a match that they will go forward so as not to give false hope to patients. The second step is to be screened to make sure you are a viable candidate. Examples of someone who would not be viable are those with heart disease or auto immune disorders. The third step is a simple cheek swab with a q-tip(actually 4 cheek swabs). The goal is to get actual cells on the swabs, not saliva.

I was surprised to find out at the screening that the entire donor process is anonymous. Donors are only permitted to know the recipient's age, sex,and diagnosis. However, they also had many stories and photos of donors and recipients together so it seems that at some point if both parties agree that they can meet. The stories of matches were quite inspiring. The Gift of Life Bone Marrow Foundation was founded in 1991 by the family of a leukemia patient. Over 4 years they conducted hundreds of donor drives and eventually found an exact match after more than 60,000 people were tested. We should all keep encouraging everyone we know to be tested. There are drives scheduled in Los Angeles, CA, Palo Alto,CA and Long Island, NY in August and September.

When I returned to work on Monday there was a company wide email that informed employees of a combined blood and bone marrow drive being conducted at Reebok that week. In my 13 years at Reebok I have seen many blood drives, but never a bone marrow drive. It was great to see that more people are being tested every day.

Being tested was also a good opportunity to share with our daughters what the Tonnesons are going through and remind them how fortunate we are (never really works but we keep on trying!) As I left our youngest daughter wished me good luck with my 'bow and arrow' test! Our thoughts and prayers are always with Bonnie and Mike.

Marty Blue


For anyone who is interested, Jeff is of "Southern California Surfer Descent" and thus wasn't eligible for the Gift of Life bone marrow drive. Here's a picture of Marty, Jeff and their three daughters:



Thanks, again, Marty, for the first-hand account, and Jeff, for providing the family photo.

Sunday, July 10, 2005

Big news: additional cord blood match

Here is some news from Michelle Ebersman, which is more encouraging than some of the recent updates:

They found a cord C that matches one of the original 2
cords! If it matches Bonnie (they will find out in a
few days), she will leave for MN a week from Monday.

Bonnie's good friend Stacy Keare had a cocktail party
in honor of Bonnie tonight and she looked happy and
radiant and was all dressed up and surrounded by love--
it was really nice.

Michelle

Thanks Michelle, for passing on this news. Looking forward to pictures from either you or Stacy -- sorry not to be there. My fingers and toes are crossed, now that I am back in sunny Burlingame.

Saturday, July 09, 2005

Next steps and timing for Bonnie

Michelle sent this update today, indicating next steps and timing for Bonnie:

Just one more bit: Bonnie is meeting with her UCSF
docs on Tuesday. At that time they will set a date
for when they will start up with the chemo again if a
donor or compatible cord blood units haven't been found.

Again, I should have a better sense of things by Sunday night. Will keep you posted.

Friday, July 08, 2005

Rolling with the punches

Stacey Keare, a friend of Bonnie, has sent an update which is fairly consistent with Michele Ebersman´s earlier, pre-Minneapolis posting:

Hi Gib. I spoke with Bonnie from Minnesota and the news is not all good. Apparently, there are two cord blood matches for Bonnie but the two cord blood matches are not compatible with each other. Therefore they will have to continue the search and it looks like Bon will have to go back into chemo in San Francisco pending their finding a better match. I don't know how much of a task that is, as yet, but I´m sure we´ll discover soon.

Stacey

Kristen and I return on Saturday evening and Kristen will check in with Bonnie on Sunday night, so I will pass on more news then. Thanks, Stacey, for the update.

Wednesday, July 06, 2005

Nike Half-Marathon fundraiser

Here is an update from Charlene Hays on the Nike Half-Marathon. It´s not too late to join!

Hello all-

Sorry for the lapse in communication- I've been out of
town for the past 3 weeks, and head out tomorrow for
another week.

With 16 weeks until race day, it's time to get serious
about training! I have a 16 week training program for
you even- check out the following link:

Nike Half Training Schedule

The dates on this schedule are for a July race, so
just adjust them for October 23. I think this is a
very manageable schedule- if you have any questions,
please let me know.

It seems that Saturday morning around 8 a.m. is the
preferred day of the week for group runs/walks, and I
would like to start next weekend (I'll be out of town
this weekend). I know it is not the most exciting
run, but Sawyer's Camp Trail is marked at every 1/2
mile, has plenty of parking, and is pretty much flat.
If anyone has any suggestions of other places that fit
that criteria, please let me know. (There is a trail
at the bay also, but at that time of day, the tide is
out and it gets pretty ripe down there).

Team t-shirts are in the works, so look for those
soon. Also, I only have an official race registration
from Louisa so far, and although the deadline is
October 19, the race is expected to sell out, so
please don't wait!! Register online at by clicking here.

Best,
Charlie


My knee is getting back to form, so maybe I will join you all. Kristen is in the background saying "I suppose I might join." Then again, it´s 2 o´clock in the morning and she might say yes to anything.

Tuesday, July 05, 2005

Bonnie flies to MN today

It´s late Tuesday night, and presumably this is the day that Bonnie, Mike and her Dad fly to MN for an intake meeting then return to sunny Burlingame a day or so later. Of course, I can´t be sure as I am sitting in an Internet cafe somewhere in Barcelona. So, if you are in Burlingame and know anything about the health or whereabouts of Bonnie, send me a message at gbiddle616ATaol.com.

For the first time in a long while I find myself suffering at the hands of technology. The keyboard I am using is beer-soaked, poorly lit, and is a European keyboard, to boot, which means a lot of the letters are in bizarre places. This has rendered my typing to four words a minute, and for the life of me, I can´t find the AT-sign to give you my proper email address. Luckily, I am not beer-soaked. Really.

Monday, July 04, 2005

Have faith and stay positive!

I found this comment from a fellow blogger underneath the latest "It's official: Remission!" posting. (Click here to see full posting.) I think it's worth bringing front and center:

I realize this is kind of random, but I found your blog when searching for Leukemia and Team in Training. Bonnie's story is really moving. My wife is a Leukemia survivor (AML, 5 1/2 years). She was diagnosed on her 30th birthday when our daughter was 4 months old. She failed to achieve any remission and had to immediately undergo a bone marrow transplant (fortunately her sister was a match). She was in very bad shape, spent time in ICU, had touch and go moments, but she made it. I guess I'd like to offer Bonnie some hope and encouragement from a complete stranger. She and her family will be in our thoughts.

Have faith and stay positive,


Marshall


You can check out Marshall's blog by clicking here. Thanks, Marshall, for the encouraging words.

Saturday, July 02, 2005

Gall Bladder & Cord blood update

Bonnie sent me a note, "Vicoden is my friend," as "it hurts when I bend." (Hey! This is kind of catchy, can anyone write a song for this?) Bonnie also reported that her gall bladder did have some scarring and there was evidence of large kidney stones passing, so it was the right thing to remove the gall bladder.

Here is a live update from Michelle Ebersman (submitted by me shoreside in Puerto Rico):
I visited Bonnie today. She is doing great although she is sore from the gall bladder surgery. The only setback is that the two cord bloods that match her don't match each other. Her physicians need to find an additional cord blood sample to match one of the existing two samples, or two new samples that match both Bonnie and match each other.

This will likely push back the timing of the transplant-- not good news as she may need to go into a holding pattern with more chemo. Also, they have typed 90% of the samples from recent bone marrow drives and there haven't been any matches -- yet.

-Michelle

Keep those guest blogs coming, Michelle!

Friday, July 01, 2005

Team in Training fundraising opportunity

Below is another fundraising opportunity for The Leukemia & Lymphoma Society and their "Team in Training" Program. This is a friend of mine, Brian Mott, who lives in Marin and is doing the Pac Grove triathlon in September. Brian would love Bonnie to be an honoree of his, though I haven't been able to talk him into a "Go Bonnie!" tattoo on his biceps, or to shave his head with "B" on his scalp, as yet. Here's his pitch:

Greetings!I am once again raising money for The Leukemia & Lymphoma Society as a participant in their Team In Training Pacific Grove Triathlon and I'm asking you to help by making a contribution. This is the third time I've participated in this great cause and I'm hoping to break my last fundraising total of $6,000.

Each donation helps accelerate cures for leukemia, lymphoma and myeloma and brings hope to the patients and families who are on the front lines of the battle against these diseases. My own family was directly affected when my grandfather died of Leukemia before I was 10 and now I've had the opportunity to meet many involved directly and indirectly with the program who are battling the disease. One of these people, of course, is Bonnie Tonneson, who is in her second remission from ALL and is awaiting a cord-blood transplant.

If you are interested in making a donation, you can use the link below to donate online quickly and securely. You will receive a confirmation by email of your donation and I will be notified as soon as you make your donation.

Thank you very much for your support. I realize that many of you have donated in the past and I very much appreciate your generosity in supporting the Leukemia & Lymphoma Society!You can learn more about my efforts and make a donation by clicking here. Thank you once again!

Cheers,

Brian Mott

If you've never given to The Leukemia and Lymphoma Society or have never been involved with "Team in Training" they are both first-rate and definitely deserve your support.