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
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
posted by gbiddle616 at Friday, May 13, 2005
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