Sunday update on Bonnie from Cindy Lefkoff

Dear Gib,

It is Sunday, July 29, and I spoke with Bonnie this morning for an hour. She asked me to post this email on the blog so that people know what is going on. I know that when her Leukemia first returned at the end of May, she told Mike that she was afraid that this blog would end up chronicling her death. Of course, we all respect that wish, but at the same time she appreciates that everyone who cares for her so dearly wants to know what's going on. So here is what I know:

Bonnie's got a fungal lung infection infection which is a type of pneumonia. As you can imagine, this does not bode well, and it is also not unusual for someone in Bonnie's condition.

While this is horrible, Mike says that a fungal infection will not impede her white count from coming back. If the antifungal medicine can hold it at bay, and her immune system can kick in, her body may be able to fight this. This is a very big IF. (Gib's note: Bonnie is at Day 26 from beginning of chemo therapy and you typically expect white blood counts to return sometime between Day 21 and Day 30.)

No fever in several days now. This is a good thing. This may be the result of the super strong antifungal she's on.

They did a bronchoscopy and a CT scan Thursday afternoon, and they have not been able to figure out exactly what type of infection this is.

Bonnie's on and off of morphine & methodone (?!?!) (she's been on one or the other since Monday evening). She is in a great deal of pain right now from the pressure of the swelling in her lungs. I think that the painkillers are helping a bit, but as she said this morning, "These things make me so loopy, I sound like I'm drunk!" Still got her sense of humor.

Talking with her is quite tricky. She has moments of lucidity, and she has moments of pain, exhaustion and confusion. For the most part, I haven't talked to her in quite some time. Then, this morning, she called me and I couldn't get her off! I loved it, of course, but a lot of it I couldn't understand. Then, the Bonnie I know and love would start up again with detailed information of friends' names, travel schedules and job descriptions. She also went into detail as to the "family conference" she had with the girls yesterday. There is no question that she is fighting so hard, but that she is also realistic about the odds.

She has made it very clear that she does not want visitors at all. It's just too much for her. She's either in pain, out of it, asleep or holding out for a brief glimpse of the girls. She's also not taking any phone calls as I'm sure many of you have noticed. I just send text messages and emails now and then that say "I love you." Not sure it helps her, but in some weird way, it helps me. That said, I know that when she has these moments of clarity she loves to read these things. She has said that for the most part, it's just too painful to talk.

I hope that this helps all of you a little bit. At this point, I am praying for Bonnie to find some peace and not be in pain. I am not saying in any way that I am giving up hope, I am just saying that it tears me apart to know that my beloved Bonnie is suffering. Many of her relatives are on their way in to town right now, and Bonnie is looking forward to seeing all of them. She also spoke in detail today of her plans for their family trip later this summer. She wants to have "Camp Tonneson," and I can't wait to have that happen.

Much love to you all,

Cindy Lou Hoo
(aka Cindy Lefkoff)
Boulder, CO

Saturday July 28 10 a.m. update from Alicia

Hello there ....

Last night Bonnie called me... I hadn't heard from her in days...and i hadn't seen her since last Sunday. Anyway, she sounded great, wanted to talk...... I asked her if I could spend the night at the hospital with her and she said, "sure, if you want to...." I told her that if she was going to give me an in, I was going to be there.... so.... I asked again and she said come on up!

I arrived Friday night at 1030 and I was VERY pleasantly surprised by her spirit,beauty, grace, attitude... and most importantly, her lack of pain. Her pain had subsided a bit, thank God. She was lucid and coherent.....We talked for hours... I gave her a back massage and foot massage... she loves to be touched.... she was really amazing. It was so incredible to see her and I told her that i was going to be the envy of all her friends... cuz i got to see her. :) I told her how much everyone misses her and wants to see her. She barely remembers this past horrible week. The nurse that came in this morning (Saturday) had taken care of her Tuesday/Wednesday/Thursday and couldn't believe it was the same person. She told me that earlier in the week Bonnie was suffering so much pain and having hallucinations, etc....

In any case, she is still pain...don't get me wrong. It just isn't as severe as it was. Her right arm is still numb... they think that something is pushing on a nerve... And she is short of breath, etc. Her one lung is completely infected... they STILL don't know what it is, so the Dr. came in this am and said that they are just going to keep treating it with anti-fungal, anti-biotics, etc..... they don't want to do a biopsy right now because of the risk of infection.

Lots of family is coming in today.. her uncle from Southern California is a pulmonary specialist and her aunt is an internist. Aunt Hope from Texas is coming in tomorrow... Sunday. The kids are visiting her today around noon... she is so excited to see them.

She loves loves loves getting text messages. So if any of you want to, text her.....

Let's keep praying for a miracle for our Bonnie... they need to clear those lungs and then she needs to get into remission... they don't know her white blood count yet. And.. she decided to hold off on the bone marrow biopsy for a bit....

Anyway, that is all I know.....

Love to you all..

Alicia

Update on July 25 from Stacey Keare

Hi:

Our family has been in the backcountry of Yosemite this week-- without phone and Internet access, but I find myself at a PC for the first time since Monday.

Here is an update from Stacey Keare from Wednesday:

Hi Gib . . It's Stacey Keare, Bonnie's friend from High School. I went to see Bonnie yesterday and ran into Mike in the hall as well. Don't know if you know that she is fighting an increasingly bad fungal infection in her lungs and is scheduled for a bronchoscopy today. She is in pain and is also worried about the danger of this being/turning into pneumonia. You may want to post something just to let people know that she has encountered a "curve ball" as she called it. This seemed to happen when she had her transplant but this one is particularly worrisome . . I think her friends/family would probably like to know. Thanks. Stacey

I've checked my various emails for updates and haven't seen any others. If you have seen Bonnie since Wednesday and want to share how she's doing, I'd appreciate it. Just send an email by clicking on the link in the right column.
Gib

Bonnie, Isabel and Devon

at Isabel's 6th Bday, about three weeks ago:

Isabel's 6th Bday Cake...

Bonnie, Mike, Isabel and Devon...

(Blogger) Gib and his girls...

...Kelsey (11) and Britney (9):

Bonnie dancing at Isabel's bday...

Pretty clear why Kristen (my wife and physician) thought she looked to0 healthy to return to the hospital.

Bonnie, Isabel and Devon

At Isabel's 6th Birthday -- about three weeks ago.

Photos from Isabel's 6th birthday

These photos are from about three weeks ago -- just before Bonnie went into the hospital. To see the photos click here.

Update on Bonnie from Michelle Ebersman

Hi All,

Both Wednesday and Thursday evenings Bonnie called me just to chat. She was lucid and the conversations were almost like the good old days. Last night she mentioned that she had a slight fever but then moved on to other topics. I was planning to go see her tomorrow (Saturday) morning with some girlfriends and today I got a text that essentially said she was having a bad day, has a major infection, and asked if I minded postponing my visit. She also said she was too tired to talk today. A few hours later I received an email from Bonnie and she was on her way down for her second cat-scan of the day. This has been a pretty rotten day for her. Keep the faxes/UC emails coming in to her. They are an easy way for her to feel in touch with the outside world but she can read them at her leisure.

Michelle

PS. from Gib: To contact Bonnie via the UC email system, click here. Or, you can go to www.ucsfhealth.org/adult/contact/patient.html. You can also send a fax to (415) 353 1851 (just put Bonnie Tonneson: 11-Long on the fax).

Another way to contact Bonnie

You can do all your work online by clicking here. UCSF will print your message to Bonnie and hand-deliver it to her.

Leukemia in the age of Wikipedia

I don't think it was prevalent when I first started this blog two years ago, but for those who seek basic information about leukemia, Wikipedia is a handy reference. As a reminder, Bonnie has A.L.L. for which there is a pretty cogent definition in the Wikipedia entry. Click
here to read all about it.

The rumour mill (that would be me) is saying that Bonnie has a few friends (including Isabel, Devon and Michael) in her room today celebrating her 40th birthday so it's not too late to send best wishes via email or fax. Here is a handy link to send her an email.

Kristen saw her last night and said she looks good. Surgery to remove her appendicitis was the right call as she instantly felt and looked better. The appendicitis did put a halt to her chemo treatments. Today would be the day of maximum toxicity -- two weeks after she began chemo to get her back into remission -- and it's a good sign that she looks and feels pretty good. It's now a waiting game. In about ten days we'll see if the chemo has induced remission.

Kristen did spend a bit of time talking to the nurses on 11-Long and it turns out that Bonnie was the third case of acute appendicitis this year among leukemia patients so this scenario wasn't quite as unusual as either of us thought.

I picked up my daughter, Kelsey, at Michael's house last night. Kelsey (11) spends an hour each afternoon with Isabel (6) helping her to read. Saw Mike and he's definitely well-fed and well-supported. He and the girls were eating poached salmon with a fancy fish sauce. Many thanks to all in the community who are helping out with food, playdates, and good cheer.

Happy Bday Bonnie!

How to fax Bonnie

Apparently, at the moment, faxes are a preferred way for Bonnie to receive well-wishes, so here is Bonnie's fax number: 415 353 1851.

I know with relative certainty, however, that Bonnie does read her email from time to time. Her email address is btonneson@yahoo.com, or you can click here to send her an email.

And for those who text, you can send Bonnie an SMS message to her cell (you need to know this on your own as I won't blog it here for fear of all the low-interest loan offers Bonnie will get). Despite the fact that Bonnie is now on the backside of 40, she is a relatively seasoned "texter." I got a text message from her on Friday, "let k kno that i gt appendicitis surg? n option?" (Kristen is my wife and one of Kristen's physicians.)

Appendix removed for Bonnie's 40th B-day

Here is an update on Bonnie from Katy Klinkenberg, a Dartmouth pal.

I just spent three days with Bonnie at UCSF Medical Center, and she once again amazed me. Upon arrival I expected to find her flat on her back but instead found her walking down the hall in her pretty orange PJ’s, towing her friend the pole. This was Thursday the 12th. Some of her energy had come back after a rough couple of days as her chemo course ended, and she was chatty and happy. She tired easily and felt weak, but her spirits were up. Friday was much the same and she was busy working on her projects from her hospital bed, getting things in order for Devon, Isabel, Mike and others.

On Saturday, though, things took a turn for the worse. She felt a growing pain in her right abdomen and, following a CT scan later that day, was found to have developed acute appendicitis. She was told it was a result of her chemo. The question at that point was, should she have her appendix removed and risk infection of the surgical site and/or bleeding, or try to control the appendicitis with heavy doses of antibiotics, with the potential that her appendix could burst? In the middle of all this, Devon and Isabel came for a visit, which Bonnie had very much been looking forward to. Her doctors went with the antibiotics option for less than 24 hours to see if she would improve. She did not, and today (her 40th birthday, no less) she had laporascopic surgery to remove her appendix. She was waking up when I talked to Mike this evening, and he said she was doing OK. He’d been there since Saturday afternoon.

Her biopsy scheduled for tomorrow has been canceled, since the purpose of it was to determine if she should continue chemo or not. Instead her doctors have decided that she will not have more chemo during this stay because of the toll it has taken on her. She’ll have a biopsy in 7-10 days, to determine if the leukemia has returned.

What you can do:

** Wish her happy birthday! Her 40th birthday was yesterday, Sunday the 15th. Bonnie would love to have faxes (we asked her this evening what medium she likes best). I saw how much she appreciates receiving messages from her friends and loved ones.

** Keep her in your thoughts and prayers. The next couple of weeks are critical ones for her going into remission.

Best,

Katy Klinkenberg, Bonnie’s friend from Dartmouth days

Update on Bonnie from Michelle Ebersman

I spoke to Bonnie today and she sounded really good. She joked around and wanted news from "the outside world". It was the best I have heard her sound since she started her stay in the hospital. However, she said that starting tomorrow she is going to feel much worse and will continue to feel worse for 10 more days. She is going to start feeling the chemo- a delayed reaction- tomorrow. That is not to say that she hasn't been feeling it over the past week. They will do a biopsy on Day 15 ( I believe today is Day 9....Mike will confirm all of this I am sure) to see if there is still leukemia. If there is, and if her organs can tolerate it, they will start all over again with the chemo. If it is gone (pray, pray, pray for that), then they will nurse her back to stronger health and send her home. I hope this information is helpful to those that keep asking and will tide people over until Mike posts a blog.

Best,
Michelle Ebersman

How to Help (from Bonnie's friends)

The Tonneson family is grateful for the support, concern, and care that friends, family, and the greater community have provided them during this time. It is clear that Bonnie has touched the lives of hundreds and hundreds of people; she is an incredibly special and strong person and so many of us have been changed for the better just by knowing her. With this in mind, it is our hope that this post will help facilitate all efforts to assist the Tonneson family over the coming months.

There are many ways that you can help the Tonnesons. This post has been prepared to facilitate your efforts to contribute. Please find an area that meets your time and talents and contact the appropriate facilitator.

Medical Updates and Information

Information on Bonnie's progress in the hospital can be found here. This blog will be updated periodically with information about Bonnie and how she is doing.

Please refer to this blog for the most up-to-date information on Bonnie's progress and, if possible, refrain from passing along information that you might hear from other sources. One of the most important things all of us can do at this time is to keep disinformation to a minimum, especially for the sake of the girls. What might be said on the phone, in a parking lot, or in a park might be overheard or misunderstood by children who play with the Tonneson girls. Unfortunately, there has already been an instance of this type of thing happening and we want to be sure that it does not happen while Bonnie is in the hospital.

Meals/Food Delivery

Meals for Bonnie's husband, Mike, and daughters Isabel (age 6) and Devon (age 4) are greatly appreciated and are being delivered every Tuesday and Thursday. Sign-ups are available by clicking here.

An alternative method used by the Tonnesons are the meals ready to cook at home or stow in the freezer available through the company "Sous Kitchen". If you'd like to give the Tonnesons a Sous Kitchen gift certificate, they can use it when they pick up ready-made meals. You can get one of any denomination by calling Sous Kitchen at 1-650-508-0800 or by clicking here(www.souskitchen.com). They will then email you a gift certificate code. When you get this email, forward it to Erin Crocker by clicking
here or by sending an email to: emcbride@alumni-gsb.stanford.edu. Erin will then keep track of all the codes and make sure they are used by the Tonnesons.

Donating Blood and Platelets

Bonnie needs many blood and platelet transfusions. She has type O+ blood. If you do have type O+ 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 the UCSF Blood Donor Center at the UCSF campus on Parnassus Ave in Cole Valley in SF. You can call the main number for directions and info: 415 353 1809. Their hours are 8:00a-7:00p weekdays, and 9:00a-4:00p Saturdays. There is no appointment necessary for whole blood. For platelets, you will need to donate whole blood first (no appointment), and then they will screen for a match with Bonnie, at which point you would schedule a subsequent platelet appointment. Once again, when donating, make sure to ask that you're giving a DIRECTED DONATION to Bonnie Tonneson. For more information on how to do this, please contact Devon Gold by clicking
here or sending an email to darrenanddevon@comcast.net.

Playdates

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 playdate (on-going or otherwise) with your children and the Tonneson children, please contact Alicia Sanguinetti at aliciadelgrande@sbcglobal.net or by clicking
here to send an email directly.

Weekend Activities

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 or click
here.

Contacting Bonnie in the Hospital

Bonnie is a patient at UCSF Medical Center in San Francisco. She can receive snail mail and loves to hear from friends. The address at UCSF is:

Bonnie Tonneson
UCSF Hospital
505 Parnassus Ave
San Francisco, CA 94143.
(Please write "Patient Mail" in the lower right corner of the envelope.)

You can also write Bonnie a note through the hospital website and it will be delivered to Bonnie within one business day, Monday through Friday. The link is here

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

Participate in a Prayer Circle

Kristin Donato and Mireille McKee are working together to create an ongoing prayer circle to support Bonnie. Details are not yet set, but if you are interested in participating, please contact Mireille McKee at director@littlewonders.org or by clicking here.

Write a Wish for Bonnie

Kristin Donato is also pulling together a "What I Love About Bonnie" book. Please take a minute to write out a favorite story or memory or thing that you love about Bonnie. Send those cards to 1145 Oxford Circle, Burlingame, CA 94010 so that Kristin can compile them in a book for Bonnie.

Donate to a Rummage Sale

Janae Corley writes: "Many of our neighbors are actively involved with the Leukemia & Lymphoma Society's Team In Training program to raise money to fight blood cancer. The Hacienda Neighborhood is coordinating a neighborhood garage sale on July 21st to further our goal of raising $10,000 for the society. There are three ways people can help:

1. If you live near The Carey School, join the garage sale. We will provide advertising and signage. You get to clean out the garage and support a great cause. At the end of the sale, you can forward us a check written out to the Leukemia & Lymphoma Society which is 100% tax deductible.

2. Donate items to the sale. We will be happy to take donations of your previously loved treasures for the sale. In this case, we will not be able to provide a tax deductible receipt but we will be very thankful for your contributions. Donations can be dropped off on Friday, July 20th at 2013 La Salle Drive in San Mateo.

3. Make a donation to the society. Donations are always welcome! And of course, donations are tax deductible."

For more information, please contact Janae Corley at janae@iwipromotions.com or by clicking here.

For More Information about Leukemia

Please see the Leukemia and Lymphoma Society's website located at www.leukemia.org or by clicking here.

Note from Mike early July 2007

All:

It's been a very, very long time since I have written to this broad audience of family and friends. That's largely because everything was tracking well and life was getting back to normal.

Unfortunately, that calm has ended. We found out late last week that Bonnie had relapsed and the Leukemia is back in full force.

Like the previous two times, Bonnie once again self-diagnosed; she knows her body that well. One suspicious bruise at the base of her neck was enough to put her on high alert. Four days and one bone marrow biopsy later, it was confirmed that the Leukemia had returned.

She is now facing Leukemia for the 3rd time in 4 years. Her options are few and the odds, candidly, are grim.

Bonnie is actually in quite good spirits. She has taken a very sober look at where she is and what all of this means. Per usual she has turned her focus on Isabel and Devon, and getting ready for whatever all of this brings. Her strength, grace, focus and poise is just mesmerizing.

Bonnie has decided not to chase a silver bullet at some hospital out of town and never come home. She wants to stay home with the girls. She has been buying some time ...over the last week, and likely one more ...via red blood cell and platelet transfusions. She has decided to attempt a re-induction therapy one more time --hoping to go into remission and get perhaps an extra month at the other end. Today she and I were talking about going on a trip somewhere, just our family, somewhere on the water, when she gets out of the hospital. She wants the girls' last memory of her to be a happy one and Bonnie has always been happiest on the water.

We have fast-tracked Isabel's 6th birthday party for this coming Sunday evening and Bonnie is focused on "getting her life in order". It's somewhat mind-numbing to see her film a video for the girls one moment, make future arrangements for Devon RE: kindergarten admissions the next, and then turn around and make lists of long-term to-do's for me. All this in the face of a major fight.

In the mean time, our local friends again have taken on Bonnie's condition as a rallying cry. Committees have been formed. Dinners sent. Play dates for Isabel and Devon hosted. Rides arranged/given. Somehow, this Wed, Betsy, Lisa, and Hilary (with 2 days notice) pulled off an elegant 40th birthday luncheon for Bonnie which was simply amazing....It is like witnessing an Amish community barn-raising, where people selflessly become part of a well-oiled machine for the benefit of someone else. We are humbled and honored.

I know Bonnie would love to hear from, and possibly see, many of you. ...She will be back at UCSF toward the end of next week and will have her cell phone (415 602 3847) and access to fax (which I will send later). Please, though, wait to call her until she is there. She is so overwhelmed right now trying to "get done what needs to get done." For now, for the next week, email is best (btonneson@yahoo.com)or you can click here to send an email directly.

Many of you have asked what you can do. Right now, above all, we need your prayers ...1) that Bonnie will survive this next round of chemo and 2) that it will successfully put her back in remission. You have always been there for us
...and we especially need you now in this regard.

God bless,

Mike