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
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
posted by gbiddle616 at Thursday, July 21, 2005
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