Michael spotted in downtown Burlingame

Michael, Kristen, Betsy, Hilary and Lisa discuss bone marrow transplant drives for Bonnie in downtown Burlingame. Click here for more photos.

Preliminary Plan: Summer in Minnesota?

This weekend, Bonnie, her doctors, and family spent a lot of time evaluating options. The preliminary plan is to go to The University of Minnesota in mid-June for an initial meeting, then return there in July for a cord blood transplant. Minnesota is one of the world's largest cord blood transplant centers as they have performed more than 750 cord blood transplants. They also have the most experience with "pooled" cord blood transplants -- pooling two different cord blood samples -- which is typically required for adult patients in order to get enough blood volume. This plan is based on a weekend's worth of discussions with her physicians (the thinking may change) and is dependent on getting her back into remission in the next few weeks.

The National Bone Marrow registry site is a great resource, and here is the specific link for more information about cord blood transplants. If you do some in-depth research on this site, remember that Bonnie has A.L.L. (adult), this would be an unrelated cord blood transpant, and within a few weeks Bonnie should be in her 2nd remission. (Hint: there's some pretty encouraging data on this subset).

I know everyone's natural reaction is to mount a large bone marrow donor drive. This is always the right thing to do, as the more donors, the better the odds for future patients with leukemia. It's also a good outlet for Bonnie's friends and families who want to take action, and do whatever it takes to get her back to health. So, "the committee" is getting together to organize a drive -- details later.

Recognize, however, that a bone marrow match being found in a present-day drive is the equivalent of winning the lottery. People do win lotteries, however, so stay tuned for details on how you can help. In the meantime, here is more information about how to become a donor:

National Marrow Donor Program

On the good luck front, I'm glad Bonnie will be visiting Minnesota during the summer and not the winter! She should be around her home in Burlingame for most of June, which I am sure she, her friends and family will enjoy, and then will likely head to sunny Minnesota in July. That's the initial plan for now, at least.

My best to Bonnie and all her family.

Friday night update: No matches

If you have a lucky penny, rabbit's foot, or anything that brings good luck, Bonnie could use it at the moment. Her sister was "typed" for bone marrow compatibility and she is not a match. On a preliminary basis, there isn't a match in the National Bone Marrow Registry either.

As a reminder, there was a one in four chance that Bonnie's sister would match, and an 80% chance she would find a match in the national registry. Bonnie's having a little bad luck as the odds should have been in her favor.

So what does this mean? The first priority remains getting Bonnie back into remission. Then, if no match is found for a bone marrow transplant, the next course of action is to do a transplant using umbilical cord blood. The good news about this path is that the immune system in "cord blood" is much less developed, meaning it's more adaptable to Bonnie's immune system, so the requirements for matching are not nearly as rigorous. There have been very positive results for children with cord blood transplants, but for adults it is still a bit experimental.

I talked to Bonnie on the cell today, and she sounds well. She is, however, having a course of more aggressive chemotherapy tonight which will likely leave her pretty wiped this weekend. My sense is that her physicians want to be a little more aggressive about eradicating the cancer cells, given that there may be a little longer time required to sort out the future transplant options.

Might be a good time to send Bonnie a card, letter or email. Put a four-leaf clover in the envelope for her, too.

Day 14 Bone Marrow Biopsy Results: Good

Bonnie got the results of her bone marrow biopsy results yesterday, and they were positive. The tests showed a 90% reduction in her cancer cells, which means she will continue on the current chemotherapy regime over the next two weeks. The goal is to get Bonnie back into remission at the end of one month of chemotherapy, and she's currently on track. If the results had not been as good, there would likely have been an increase in the chemotherapy dosages, but this isn't required, which is very good.

A few of Bonnie's friends visited her yesterday for a head-shaving ceremony. Bonnie prefers to shave her head, rather than letting it fall out in tufts as the chemo kills her body's fast-growing cells. No, none of Bonnie's friends shaved their heads, too, as a demonstration of empathy. Photos later.

Saturday night update: Kids visit

Kristen (my wife and Bonnie's attending physician) was working this weekend at UCSF, so I am relatively up-to-date.

Both kids visited today, as well as Bonnie's Mom and Dad. Devon and Isabel were there for about 45 minutes and like any almost four and almost two year-old, sat on the bed and played with the controls. Bed up, bed down. Bed flat, bed bent. (This occupies about thirty minutes.) Bonnie, Isabel and Devon shared a blueberry muffin while the bed went up-down, back and forth. (On Thursday the routine was the same, except the three shared a popsicle.)

Bonnie gets tired easily, so the 45 minutes with the kids is just the right length visit. Kristen took a little time off from 11-Long to go to the patient reunion party for everyone who has had a succesful bone marrow transplant at UCSF. Very hopeful, uplifting event, which included a seventy-four year-old woman who underwent a successful transplant a few years ago. If she can do it, Bonnie certainly can!

Pop Quiz: How well do you know Bonnie?

Devon and Isabel were able to visit Bonnie today, and all went well. The kids were excited to see Bonnie, and didn't put up too much of a fuss when they had to leave. Bonnie's parents were in, as well.

Pop quiz time: When Bonnie was on her own at the end of the day, she reflected: "When I get done with this leukemia thing I'm going to:

a.) "Disneyland."
b.) "Never work again, and spend all my time with my kids."
c.) "Go on a cooking binge."
d.) "Get another belly-button ring."
e.) None of the above.

How well do you know Bonnie? Post your answer by hitting the "comment" button below.

Wednesday night update: Better today

Bonnie feeling a little bit better than yesterday. Limit on kid visits is lifted tomorrow, so Devon and Isabel should be able to visit Bonnie for the first time since the day before Mother's Day. Bonnie's parents are in town and have been visiting daily.

"Run for Bonnie" meeting -- from Charlene

I'm excited by the response to the Nike Marathon "Run for Bonnie" effort. Several of you sound a little nervous about the commitment but seem dedicated, which is great. As a reminder, here is the link for information about the Nike Marathon:

Nike Marathon

Let's get together next Wednesday at 10:30 at Peet's on Burlingame Ave.(map) to discuss training concerns, group runs, fundraising efforts, etc.

If you can't make it but want the "minutes", let me know and I'll get them to you. Questions? Click here to contact me via email.

Cheers,
Charlie

Tuesday night visit to Bonnie (from Alicia)

We got to see the Beautiful Bonnie this evening….And a beautiful sight she was….

Trish Bugg, Kelly Bligh and I went to see our buddy this evening… She was so INCREDIBLE! We dropped in on the girl, with popsicles in hand, to give her lots of love and say hello. She looked beautiful… we woke her from her afternoon nap, only to be greeted with a smile from ear to ear. The girl loves having visitors. Because of all the steroids, watching TV, reading books, etc. are all taxing… she loved just sitting and listening to our crazy stories. We had her laughing a lot… she has an amazing attitude. What a brave girl she is…. You would never know she isn’t feeling her best…she never complains… she is a real HERO. We love you Bonnie and you made our night… actually, you made our week.

We will see you soon…. Very soon…..

We love you….

Alicia

New photos of Michael and the girls

Michael, Isabel and Devon visited our house last night (Saturday 5/14) for dinner. Michael just made the 120 lb. limit for the backyard space trolley.


To see more photos, click on the thumbnail photos on the right margin of this page.

Run for Bonnie -- Note from Charlene Hays

As you all think of supporting Bonnie in her fight against Leukemia, you might also think of running or walking the Nike Women's Marathon and 1/2 marathon October 23 (feel free to do the whole 26.2- I myself will be doing the half!). I am coordinating a team to run in honor of Bonnie (anybody have a good team name suggestion?). If you, your spouse, or your friends would like to participate, please click here to register, then forward your registration to me so that I can put you on our list. Although it is called the Nike Women's Marathon, men are also encouraged to participate.

We will keep a log of training miles to tally at the end (how many hundreds of miles will the team cover?), as well as a total of funds raised for the Leukemia and Lymphoma Society. Although this is not a Team in Training group, I would encourage all participants to raise/donate funds to help find a cure. We will have a team run once a week (day and time to be determined).

To learn more, or for help planning your training, see the following:

Nike Marathon
Oprah's Half Marathon Training Guide
Hal Higdon's Marathon Training Guide
Runner's World Training Guide

Please feel free to email me with any questions.

Best,
Charlie

How to contact Bonnie

Bonnie Tonneson (Patient)
UCSF Medical Center
Room 1164, Long Hospital
505 Parnassus Avenue
SF, CA 94143
415 353 8472 (direct line in room)
415 602 3847 (cell)
415 353 1851 (fax at hospital)
btonneson@yahoo.com

You can also send a note to Bonnie via UCSF by clicking here, and your printed message will be delivered to Bonnie within 24 hours.

Note from Mike: 5/13

All:

It is with a very sad and heavy heart that I inform you all that Bonnie has had a relapse, and her Leukemia has come back in full force.

As of last Thursday, 05/05/05, we received the results of a bone marrow biopsy and they showed clear evidence of Leukemia, meaning that the current protocol did not work for Bonnie. We now must embark on the much more aggressive (and risky) path of a bone marrow/stem-cell transplant.

Bonnie had made it 21 months in remission. She was on track, looked great, and had even started working part-time and working out. Her numbers came down a bit in early April, and based on a seemingly similar episode from six months ago, the hypothesis was that she was very sensitive to the chemo and simply needed a break from her meds. After a couple weeks off of chemo the numbers came back only slightly. Then, on a trip to Boulder, a massage resulted in petechiae and obvious bruising -- reminiscent of her symptoms leading up to the original diagnosis at the end of July '03. That prompted the bone marrow biopsy last Thursday and the subsequent conclusion that she had relapsed with ALL (Acute Lymphatic Leukemia).

Bonnie began chemotherapy Monday night and will undergo a 28-day regimen identical to that of Aug '03 -- with the same objective of getting back into remission. Then she'll be home for 2-3 weeks to recover. She will go into a holding pattern of mini consolidation chemo rounds until a donor is found.

The parallel activity is finding a perfect match donor. Her sister Karen will be tested shortly. In addition, there will be an exhaustive search of several international bone marrow donor registries. Ten genetic markers must line up perfectly in order to proceed. Virtually all 10 markers correlate highly with ethnicity, so it will be extremely likely that a perfect match, if found, will come from a donor whose ancestry is Ashkenazi (Eastern European) Jew. The very good news here is that Ashkenazi Jews are quite statistically over-represented among the more than 8+ million registered donor pool. Her doctors think there is a "very good chance" of finding a perfect match in fairly short order -- as little as 4-6 weeks.

Once the match is found she will be prepped for the transplant via massive chemo (10x strength of previous rounds) and a total body irradiation. The objective is to eliminate her bone marrow in its entirety. She will start from a clean slate and will inherit all of the attributes of the donor's immune system.

Post transplant, the first 100 days will be especially critical. The first 30 days will be spent in the hospital. The ensuing 70 are usually spent at home; but in light of the risk of viral infections from Isabel and Devon, we will likely find an apartment in SF for Bonnie. She will literally be chaperoned 24/7 for the entire 70 days -- by volunteer family members and friends. The chaperones will monitor her condition, accompany her to daily clinic visits, and record vital signs, as well as her intake of medicines and food. This period is especially crucial: one, because of possible infection which can be life-threatening until her new immune systems start to function for her (~6 mos. post-transplant), and two, because of graft vs. host (GVH) reactions, wherein Bon's newly inherited immune system attacks the unrecognizable organs and chemistry of its new body/host (i.e. Bonnie's body vs. the familiar chemistry of the donor). The delicate balance of controlling such attacks v. letting the new immune system grow, mature and acclimate is managed by the doctors via judiciously administering immuno--suppressant drugs. The 6 months thereafter are also crucial, albeit with somewhat less daily imminent risk.
It will also involve continued close monitoring and frequent tests and drug adjustments.

In summary, we face a solid year of very intense, relentless, and potentially life-threatening GVH situations. As Dr. Linker stated it: Bonnie is in for the fight of her life and, in fact, this time she is fighting for her life, as only 1/3 of all 2nd remission ALL patients survive and are cured. Not surprisingly, Bonnie is focused on being cured -- she'll take those odds and beat them.

So how is Bonnie taking all of this? With continued strength and focus. In typical Bonnie style, she initially described her feelings as being "not scared, not depressed, but just pissed at this awful inconvenience of having to start over". That said, of course it is scary, and it is confusing on so many levels. So again, we focus on the path to a cure, and managing our daily activities for Bonnie and for our kids.

Isabel and Devon are doing well. Isabel is trying to process what little we have told her so far. It is amazing what a 3.5 year old can infer. Our full time nanny(and family member) Bobbi Jo, continues to be a dynamo and a second Mom to both of them. Both our girls continue to make us smile and laugh even in the face of all of this. They make us so proud and grateful every single day.

And again, our family is moving forward with the humbling and overwhelming support and help of local friends. Here a week has gone by and I am just getting word out to this group via email, yet our friends have already mobilized around Bonnie and our family. Meals started coming Monday, and are oversubscribed out 4 months. Play dates for the kids have been organized. A weblog has been built, a website is in the works. Family is scheduled to be here at our house for the next month and more. Chaperone offers have been made. Daily visitors to Bonnie are numerous. And a blood drive is in the works....It is just amazing. And it speaks volumes about Bonnie.

Bon is in good spirits and is taking some calls and emails at the hospital. UCSF now has a shared computer on the floor with broadband so she is on her btonneson@yahoo.com account intermittently. I know she would love to hear from you. When she has the energy, she welcomes your calls to her direct line in her room: 415 353 8472. If you call and do not get an answer, it likely means she either can't take your call or has turned off the phone. For letters, see the address below. For care packages, the rules are as before: no fresh foods, candies, flowers, or stuffed animals. For now she wants visitors, but it is best to call in advance and wear running shoes. Bonnie is on a mission to walk 3 miles/day around the ward, which is 12 laps -- so be prepared to be dragged out with her and her medicine pole. This will likely change as the chemo treatments catch up to her; I'll let you know.

For info on what you can do to help -- please see the attached "How To Help.doc" file, which is also reproduced below on this weblog. This is but a portion of what has been organized thus far for Bonnie and us. It covers, meals, play dates, blood and platelet donations, hospital visits, contact information, how to help Leukemia research, etc. More on the process of being tested for a bone marrow match will follow shortly.

To our friends who have already rallied around us, we thank you sincerely. We are so grateful and humbled.

To all, please know that despite this setback, we continue to fight to win vs. this disease, and feel blessed to have so many wonderful people fighting with us.

Best,
Mike

Mike Tonneson
334 Pepper Avenue
Burlingame, CA 94010
650 343 3718 (home)
650 219 7911 (Mike cell)
650 697 4800 x111 (Mike work)
mt@arcadiacomponents.com

Saw Bonnie today: Looks well

Hospital, Day #6.

Bonnie was a little groggy from the meds -- she complains she has "ADHD" due to them. (For those who cringe at acronyms, I think ADHD is Attention Deficit with Hyperactivity Disorder.)

Unfortunately, the kids were not able to visit today. (Update from Chief Medical Officer: the kids can probably visit on May 16th.) Bonnie misses her kids and was disappointed she had to leave for the hospital the day before Mother's Day.

Michael will be sending out a blast email tomorrow letting friends and family know how they can help -- I think most of it is represented on the following posts. Bonnie and he were doing a mail merge of their email address books today. Ah, technology.

How to Help Mike, Bonnie, Isabel and Devon

Thank you for your interest in helping Bonnie and her family. They are overwhelmed by the support coming from friends, family and the community at large.

There are many ways you can help. Bonnie's friends have submitted the following "How to Help" posts. Find an area that meets your time and talents and contact the appropriate facilitator. The main areas are:

• Meal and food delivery
• Blood & platelet donation
• Playdates & weekend activities
• Visiting or writing Bonnie
• Supporting Leukemia & Lymphoma research

Read the posts below to see how you can help. Thanks!

How to Help: Meal Delivery

Meals for Bonnie’s husband (Mike) and daughters (Isabel, age 4 & Devon, 2) are greatly appreciated and are being delivered every Monday, Wednesday and Friday.

We have targeted specific groups for meal delivery over the next few months -- see the schedule below. If you fit into one of these groups, contact that month’s coordinator via email to be included in that month’s schedule.

If, however, you do not fit into a particular targeted group, but still want to contribute, please contact Hilary Somorjai at hil5000@yahoo.com and she will fit you into a schedule.

• Little Wonders Wednesday Morning Class: JUNE Meals. Please contact Denee Berliner at deneetorrano@yahoo.com.
• BMC Board of Directors (past & present): JULY Meals. Contact Betsy Berman at berman@hamlin.org.
• Gazelle Creative Learning School: AUGUST Meals. Contact Devon Gold at darrenanddevon@comcast.net.
• Little Wonders Board of Directors (past and present): SEPTEMBER Meals. Contact Lisa Kearns at aklk@mindspring.com.

Additionally, a food delivery service is being used to cook for the family on a semi-regular basis. If you prefer to contribute money to help defray the costs of this service, please send your check to Lisa Kearns at 320 Bridge Road, Hillsborough, CA 94010.

How to Help: Donating blood & platelets

Bonnie requires many blood and platelet transfusions. She has type A+ blood. Unfortunately, she cannot receive O+ blood, as she has had bad reactions to it in the past. Here's how you can help:

• Anyone, irrespective of blood type, can donate platelets to Bonnie.
  
• If you do have type A+ blood, you can make a “directed donation” of your blood to Bonnie. The procedure is simple and costs you nothing. However, you need to make the donation at UCSF Medical Center in San Francisco.

For more information on how to donate platelets or blood, please contact Lisa Kearns at aklk@mindspring.com. You can also visit the UCSF Donation website.

You can also find out about how to register with the National Marrow Donor Program by clicking here.

How to help: Playdates & Weekend Activities

It is incredibly important to Bonnie that the girls stay busy and in touch with their friends.

If you would like to set up a weekday playdate with the Tonneson kids, please contact Alicia Sanguinetti at aliciadelgrande@sbcglobal.net.

If you would like to include the Tonneson girls (and Mike) in some of your weekend plans, please contact Kelly Bligh at kellyabligh@yahoo.com.

How to contact or visit Bonnie

Bonnie is a patient at UCSF Medical Center in SF. If you want to send mail to Bonnie, the address is:

Bonnie Tonneson
UCSF hospital – 11 Long
505 Parnassus Ave
SF, CA 94143
(Write “Patient Mail” in the lower right
corner of the envelope.)

Letters, books, magazines, DVDs, and CDs are appreciated. Bonnie especially likes to read through cookbooks and other books that have short chapters. No fresh flowers (silk = o.k.) or food can be sent to her room.

You can also write Bonnie a note through the hospital website and it will be delivered to Bonnie within one business day (M-F). Click here to send a note.

Bonnie can receive visitors, but it is sometimes exhausting for her. It is really important that you call her to pre-arrange a visit (Bonnie's cel: 415 602-3847; Hospital switchboard: 415 353-1664). Her energy level fluctuates from hour to hour depending on what medication she has received, so flexibility is important. If you are unsure about whether you should visit or not, it probably makes sense to go the cards, letter and "care package" route, as Bonnie will know you care, but can still get some rest.

How to help: Support Leukemia Research

Charlie Hays is putting together a team of women (and men!!) to run (or walk!) in support of Bonnie at the SF Nike marathon and half-marathon in October 2005. If you are interested in joining and training with the team, please contact Charlie at charlene_hays@yahoo.com

First day of chemo, still doing well

Hospital day #5.

On a day when you might expect to find Bonnie nauseous and vomiting, she was neither, and looked even better than yesterday. She had a lumbar puncture (spinal tap) -- to test for signs of leukemia in the spinal fluid -- and the procedure went well, too. She also had a bone marrow biopsy. She kept herself distracted by talking on the phone to Michael.

Bonnie is on steroids, and in a sure sign that she is not nauseous, she ate a whole box of Snackables. Two bowls of cereal for breakfast, too. She also discovered UCSF now has a concierge service which delivered her a latte from across the street.

Tomorrow the nanny is bringing Isabel and Devon up to visit Bonnie. Should be a good day.

Send an online greeting to Bonnie!

Click here, and your message will be delivered to Bonnie.

All goes well

Bonnie was admitted this past Saturday at UCSF in San Francisco. She has had fevers, but generally is well. She had a central line put in for IV drugs, and tonight she starts her chemotherapy. This will continue for the next four weeks.

There was a meeting of Bonnie and Michael's friends in Burlingame. Second-hand reports are that there was an agenda, action items, and an overwhelmingly take-charge attitude focused on feeding Michael and the kids, providing kid-care above and beyond the full-time Nanny, and making sure Michael has enough time and breaks for his startup and just feeling human.

In the small world department, Kristen Hege, wife of Gib Biddle (a Tuck classmate of Michael) and neighbor in Burlingame, is the attending physician taking care of Bonnie for the next two weeks. She also helps ensure the medical accuracy of these reports, as Gib was appointed "Chief Blogging Officer" by Bonnie's task force.

We'll keep you posted!

Bad News: Relapse

After two years of chemotherapy treatments, good health, and beginning to return to normal life, Bonnie developed bruising and a slight fever while on a business trip to Boulder. We hoped it might be abnormal blood levels caused by medication, but on Thursday of last week we discovered the reality: Relapse.

What does this mean? It means that Bonnie's original course of chemotherapy wasn't able to eradicate the leukemia, that it has returned, and that we need to go through the whole process again. (As a reminder, for those who are curious to research leukemia, Bonnie has A.L.L. or Acute Lymphoblastic Leukemia.)

On Saturday, Bonnie was admitted to the hospital for about a month. She will undergo chemotherapy designed to get her back into remission. After this, instead of doing the same chemotherapy regime she did over the last few years, she will likely undergo a bone marrow transplant.

Bonnie has a sister, and there is a 25% chance that she is a match for a bone marrow transplant. If she is not a match, there is a 80% chance she can find a match through the national registry. We'll cross that bridge when we get to it -- for now we are focused on getting her back into remission.

You can learn more about the National Marrow Donor Program by clicking here.

The one photo I have of Bonnie!

Got a few good pics of you and Bonnie? The Tonneson family? Click here, attach a photo, and it will magically appear on the right margin of this Blog. (The subject of the email will be the headline for the photo, and any text you include will be a comment under it.) Sometimes technology actually works! (Hit your refresh button a few times if you actually want to see it work in real-time.)

Anyway, this is a picture of Bonnie and Isabel from a few years ago:



If you prefer to send a photo the (relatively) old-fashioned way, just send a photo to gbiddle616@aol.com and I will post it to the site.

Bonnie bracelet for "Team in Training" event

This is Gib wearing a "Team in Training" wristband for Bonnie, after a Half Iron-Man fundraiser for The Leukemia and Lymphoma Society. He raised $13K for future research.

If you've made it this far...

...hit the "comment" button to post a message for Bonnie, Michael or the "Chief Blogging Officer"!