Outpatient Chemo! Gene stays home till transplant (hopefully)!
We went in this morning for blood and updates. No transfusion needed today. Neutrophils are up to 0.3 (although they could be leukemic cells, doc said they still do the job for now). On Monday they will start a new drug, dacogen, which is intended to keep his leukemia “at bay” until the transplant, which hopefully will be end of April-early May. So the protocol for this drug is 5 days a month outpatient, once a month. Although they don’t really expect this drug to put his cancer into remission, it is not out of the realm of possibility. Dr. Miller said that with the in-depth genetic analysis that they now have identifying so many different sub-types of leukemia, they don’t yet know which types may respond to newer drugs. So, a way to be hopeful, visualize the next miracle. If Gene is in remission when he receives the transplant, the outcomes are better. Dr. Miller emphasized that the identified donor is still a “potential donor” until they have been fully screened. But they are moving forward as if transplant will happen in 4-6 weeks.
I asked him if they’d decided if the transplant would be myeloablative (wipe out the marrow, total body irradiation-best possible outcome) or non-myloablative (no total body irradiation, not as damaging to the recipient, but less favorable outcomes). He said they had not yet decided, it would depend on if they think he could tolerate the myloablative at the time.
So this week, we’ll be going to the hospital from about 8:00 AM to 4:00 PM for bloodwork and chemo, then home. After that, if we avoid infection or complications, staying home until transplant, or another treatment four weeks from this one. I am hopeful that after this chemo Gene will get some energy back, because he has been at a pretty low energy level for about two weeks now, sleeping a lot, not wanting to walk or do much. Good excuse of course: lots of good basketball to nap in front of!
When I asked specifically about the decline that I see, doc said that considering his condition he was doing pretty well, and it was not outside the normal range of what we’d expect to see from someone whose leukemia has not responded to treatment. So, I guess I’m supposed to be reassured by that. He has been sleeping well, and lots of naps. We’ve got a chocolate calorie shake going. His official hospital weight is 122, with his jeans on. So that is officially less than me….
Several of you have asked about visits and you are welcome to visit us at home….but let’s just take one more day of rest, and then see how he is doing with the chemo. I’m on break for the next two weeks, so once we aren’t spending the day in the hospital, visits will be great. And even next week, if Gene is tolerating the chemo well, which they expect him to, we can do evening visits. I’ll still have my cell on, 858-337-5358, and the home phone is 858-292-5358.
So overall, a positive place to be, home, with good hope on the horizon!
Gail
Saturday, March 27, 2010
Friday, March 26, 2010
Still Standing: Poem by Michael
Dear Friends,
Below is an inspirational poem that Michael wrote for Gene:
Still Standing
Life is sometimes so fast and so busy
Watching the world go by, it can make you dizzy
Like looking out the window of a high speed train
Sometimes not able to see, to feel, to be, it’s a shame
But we go on, too busy, too tired, not taking the time
Working, hurrying, and in a rush to meet each deadline
Not thinking, not feeling, we need a good rest
And then without notice or warning, we may face a big test
All of the sudden the train comes to a stop
And all that we think and we are familiar with, is not
At first confusion, questions and concern, control has been lost
It is replaced with an eerie stillness, coldness, like a thick frost
The next days are filled with tests, meetings and disbelief
With listening, considering options, and learning about this thief
But through it all, slowly, quietly, almost undetectable at first
A calming, a energy, comes a determination to weather the worst
Now it’s time to measure, to prepare, to find your resolve
Because it is you not it, that will determine how this will evolve
You rise, you gather, you brace because you know this will be demanding
But as this cloud rolls over you know it is you not it that will be left…..still standing
A FRIEND
Below is an inspirational poem that Michael wrote for Gene:
Still Standing
Life is sometimes so fast and so busy
Watching the world go by, it can make you dizzy
Like looking out the window of a high speed train
Sometimes not able to see, to feel, to be, it’s a shame
But we go on, too busy, too tired, not taking the time
Working, hurrying, and in a rush to meet each deadline
Not thinking, not feeling, we need a good rest
And then without notice or warning, we may face a big test
All of the sudden the train comes to a stop
And all that we think and we are familiar with, is not
At first confusion, questions and concern, control has been lost
It is replaced with an eerie stillness, coldness, like a thick frost
The next days are filled with tests, meetings and disbelief
With listening, considering options, and learning about this thief
But through it all, slowly, quietly, almost undetectable at first
A calming, a energy, comes a determination to weather the worst
Now it’s time to measure, to prepare, to find your resolve
Because it is you not it, that will determine how this will evolve
You rise, you gather, you brace because you know this will be demanding
But as this cloud rolls over you know it is you not it that will be left…..still standing
A FRIEND
Thursday, March 25, 2010
Gene’s update: 3-25-10
Miracles and prayers answered: A Donor has been found!
The phone has been ringing, and we have been resisting. When we got a call from the transplant nurse at Scripps, I was almost afraid to pick it up. She called to inform us that they had located a donor! She cried with me, and said it was herfavorite part of her job. It really is quite a miracle, because Gene was an especially difficult match. They had hoped for an “8 out of 10” match, the lowest they can go in matching the 10 HLA markers. They found a “9 out of 10 match”. What we know is that it is a 36 year-old woman. We do not know if it is domestic or international. And in keeping with the Donor Registry procedures, we will remain anonymous to each other for at least 12 months, and after that only by mutual agreement. We know that this person has gone for the blood testing and has agreed to be a donor. They are hoping to set up the transplant in the next 4 – 6 weeks. Part of the time must include getting Gene in a bit better shape to receive the transplant, not including the “conditioning” regimen that he must undergo prior to the actual transplant.
This is such incredible news, as Gene’s condition would not have allowed a tremendous amount of time to go by. Interestingly, it is not a result directly of the Donor Drive at SDSU 2 days ago, nor of the efforts underway to organize one in Grant County and Albuquerque, but I believe it is the energy that went into that drive, that helped locate this donor, and the work, some tremendous work, has been done for the next person in need. You may remember reading that on any given day there are 3,500 people searching the registry, hoping to find a donor. I also believe that it is a result of all the incredible prayer and energy that has been directed our way. Thank you can’t begin to express our appreciation.
As amazing as this news is, and we are still absorbing it, the battle is far from over. The transplant is still 4-6 weeks away and Gene’s leukemia is in resurgence. Ideally, a transplant would not be performed unless he was in remission, and the potential for a favorable outcome is greater if he is in remission, but this is the only hope, and it keeps our hope alive.
For TeamGeneGC and TeamGeneUNM/ABQ, don’t stop the efforts to sign on donors, please. For one thing, all along the effort has been to increase minority representation in the Donor Registry, with Gene possibly benefiting. It looks like he will benefit from the efforts and energy that went into getting the word out somewhere, so keep the energy going. Also, this young woman is human, and anything could happen. She still has not had the final physical check out, and it still weeks away, so something still could come in the way of this donor working for us….but it looks so promising, that they gave us the word, and I am sharing that word with you.
The timing of this news could not have been more crucial. Although Gene is confident, that all will be okay, I have more information, and as a result, more doubts. I had been struggling to maintain my hope, and this news is a powerful message for me, about faith.
I hadn’t even had a chance to publicly acknowledge all of the hard work and effort that went into the SDSU Donor Drive. For those of you who know Nadine, Susan and Lori, you know they are an amazing team who’ve accomplished so much when their energies are combined, and the successful drive is yet another reminder. Gene and I are so incredibly grateful to them and to all of you who worked, and are still working, to get the word out. I am not sure if the apparent location of a donor changes anything about the online drive, I hope not, and continue to spread the word! As I said before, I truly believe that this was part of the energy field of prayers and effort and energy….Gene found a donor because of your work….the timing speaks to that for us. Please keep the effort, energy and prayers in force.
The transplant process and the year following it are daunting, to say the least. We still have the mountain to climb, but the donor is the ticket we need to start the journey. As I said, we are still processing the emotion, trying to understand the gift we’ve been given, trying to acknowledge the support and help you’ve offered.
Our time at home has been more emotional than I had anticipated, as was leaving the hospital. Yesterday we were just exhausted, and glad for the food in the freezer! Today we are both feeling a bit better. Gene’s temps have been staying below the fever level, today lower than the day we got home. Gene is pretty sick, and being in our home routine kind of draws attention to that in a way that the hospital did not. But this time is also a gift, and although there have been tears, of sadness, and of joy, it is a special time. The news makes facing what we will be told on Saturday so much easier.
So, we need miracles, and they are happening, as a result of the incredible network of support that we have. Thank you, thank you, thank you….stay with us!
¡Gracias a Dios!
Wednesday, March 24, 2010
Bone Marrow Drive Update
The following update was authored by Nadine Bezuk:
Thanks to everyone who participated in yesterday’s Bone Marrow Registry Drive. We set a new SDSU record, with 90 people joining the registry. Not everyone could be accommodated, because of the high demand.
But there’s another option—you still can participate! If you were unable to participate on Tuesday, March 23, you may do so online.
Go to bethematch.org
When asked to provide a “Promo Code”,
please enter: Gene
On this site, you’ll complete a form and request a kit to swab the inside of your cheek. If you enter the code above, it will be sent to your home at no cost to you. This only takes a few minutes of your time.
If you have any questions, please contact the San Diego Blood Bank - Stem Cell Donor Center at 619-400-8268.
Thanks for supporting SDSU Special Education Professor Gene Valles and others needing bone marrow transplants.
We are HOME, en la casa!
We are on "three-day leave", as Gene calls it. Arrived home yesterday about 5 PM and we don't have to go back to the hospital until Saturday morning. At that time we will meet with the doctor to discuss the next treatment options.
The other really good news is that the Bone Marrow Drive at SDSU yesterday was a resounding success, in terms of numbers. The Blood Bank says they typically expect to get about 30 in-person donors at an event, and yesterday they got 97 new donors, before they ran out of swab kits! They gave out the online donor info to the remaining folks who came, hopefully those potential donors will follow through. If you have any questions about how the online donor part works, please contact me: gail.moriarty@me.com. In talking with folks I've found lots of confusion about how that works, so please don't hesitate to ask, so you can also spread the word. The online donor drive is on until the middle of May. The flyer with Gene's picture has the info. If you'd like a pdf of that to send out to your contacts, again, just let me know. Thank you, thank you, thank you, to Susan Nickerson, Nadine Bezuk and Lori Albers who were the organizers with tremendous energy behind the drive. The total number is probably higher, with the online contributions.
It is very clear that Gene's leukemia is resurging. He is very ill. The leaving of the hospital and the homecoming were both very emotional experiences. We are both hopeful that this little hiatus allows us to renew in whatever ways we can, the energy needed for the fight.
Friday, March 19, 2010
Thursday, March 18, 2010
Gene's Update 3-22-10
We were so excited about Gene coming home today. Last night he spiked a fever of just over 100.5. He thinks that is just the resurgence of the leukemia cells. Doctors need to be sure it is not the sign of a serious infection. So today he had a CT Scan, a skin biopsy, and no discharge papers. His doctors are aware of his mental health needs, and are in support of him going home for what Gene calls “3 Day Leave”, but not today. As Dr. Miller said today, donor match or not, a serious fungal infection makes a transplant purely academic. They don’t know or necessarily think it is, but are being cautious. Although I feared something might come in the way of this break, I didn’t really expect it….so it feels like a sucker punch. Maybe tomorrow…..and maybe not. Serious emotional roller coaster ride today, serious disappointment. Sorry, just had to share it. We’ll sleep it off, and see what tomorrow brings.
Gene's Update 3-21-10
Gene’s update: The first day of spring
Moment to moment, one day at a time. I began feeling better Wednesday but so unsure about my contagion factor that I just decided to show up at the hospital and wait to see his doctor. Dr. Mason was great, and gave me about 45 minutes of his time, to ask all the questions I’d prepared and then some, as well as look down my throat and say that, with a mask, I could see Gene. It had been five days since I’d seen him. It felt like there was a definite decline on several fronts, physical, emotional, spiritual. Doctors and nurses saw it and commented as well. Dr. Mason told me that he recognized that we needed to get Gene home whether his numbers were there or not. The decision was made to have a bone marrow biopsy on Thursday to see why his neutrophil number was still stalled at 0.1, and to see if, perhaps, there were still leukemic cells and that was the reason for the stall.
I was able to hold Gene’s hand through the biopsy. They gave him a good cocktail of Adavan and Morphine and he had a talented third year fellow who made it almost painless (well, the cocktail helped for sure), and then at the end, showed us the tool, the marrow, the other liquid they extracted. Gene thought it was pretty cool, and I was amazed at my ability to not pass out.
After the biopsy, we relaxed together. I’m rarely there midday so it was different. One number that has continued to go up for Gene is his platelet count….so I was able to give him a light massage, something I couldn’t do when his platelets were low for fear of bruising. He told me he felt better just because some action was taken.
On Friday he was really tired, like I’d not seen before. He told me that he thought that he still had cancer, or that his cancer had come back. He certainly looks like someone with cancer, and his weight is down to 125. When he told me all the reasons, temp. spikes in the evening, return of night sweats, fatigue and malaise….I didn’t want to believe it, but what I’d seen over the past few days seemed to confirm it and his reasons made sense. The next morning, the results of the biopsy confirmed that indeed, Gene still has leukemic cells. So two rounds of chemo were not able to put him into remission. The small good news was that his marrow is “stable”. Dr. Mason had told me on Wednesday that we were in new territory and that it was moving a bit more towards the art of medicine, and less of the science, as there are no standards of treatment, no algorithm, for what to do now. They’ve told us all along that it is a difficult cancer, and he reiterated that his “complex cytogenics trumped all”, that would be the same thing they called chromosomal abnormalities at the beginning of all this, and what makes it so difficult to treat.
So, of course, the news was devastating. It seems like every time we’ve come to a fork in the road, it hasn’t gone our way. This coming Wednesday, at their team meeting, the doctors will “pow-wow” as to what should be the next course of action, and he said we would be involved in that decision. The two main choices seem to be giving him another round of chemo with a different, and possibly stronger drug, as his leukemia seems to be resistant to the ones they used, even though those are the standard of treatment. Or, they could give him a regime that would include chemo five days a month, every month, that probably would not eliminate the leukemia but would “hold the line”, to keep him as healthy as possible while we wait for a donor and transplant. Dr. Mason reminded me again that a transplant is the only thing that could save his life. So, as much of a gut punch as this is, we are so grateful for the work that Nadine and Susan and Lori have done, the plans for the donor drive on the SDSU campus this Tuesday, focusing on minority students, as it provides some hope at this otherwise dark moment. Also, over in Grant County, New Mexico, where Gene’s genes are most likely to be found (I think, at least), Sharlene and Joe and Patty and Jerry are working on a story for the local paper, including the on-line part of the drive, and using some of the information and steps that Susan and Nadine laid out for having a donor drive, are trying to organize one in Grant County. More hope. Thank you all so, so much for the energy put into this, for Gene, and for all the others who may benefit from increased participation in the donor bank.
In the midst of all this bad news, Gene’s niece Cindy and husband Jesse (who is older than me so when he calls me “Tia”, I love it, but have to think twice!), came to town to see Gene, and spent the night with me, so I had family support going through this rough weekend. At Jesse’s request I found a few things for him to help with around the house…kind of hard to do as Jim and Patty had left me in such great shape. Cindy worked on the nasturtiam jungle that was once my rose garden and freed my favorite rose from the shadows. So, their presence, company and friendship was yet another gift. They were having so much fun telling life stories at the hospital that they didn’t leave for the drive back to Phoenix until almost 8, and made it home safely.
So as much despair as I was feeling yesterday, today feels completely different. We were told today that he is going home tomorrow, Monday, for “about a week”, and then will return for the five-day chemo, and then return home again (assuming we can avoid the danger of infection while he is an outpatient, or any other complications that might require him to be re-hospitalized). We will need to go into the hospital everyday for a blood draw and analysis, anywhere from 1 to 3 to 6 hours at the hospital, but then back home. So tonight I am happy and excited that Gene is coming home. He’ll get to sleep for many undisturbed hours. Except for reporting to the hospital, we plan to just cocoon for a few days, sleep, watch movies (Wendy’s movies!), eat food that, while meeting neutropenic guidelines, doesn’t have to be chilled, frozen, microwaved…..we can have real meals.
Kim and Susan came over this afternoon and we had a cleaning session…..sorry you missed it Linda, you were at work and it wasn’t much of a party, just a “get it done.” (There will be more opportunities!) I’m so grateful for their help, the house is “disinfected” and “de-Breezy-ed” (as much as possible with her still here!), Susan vacuumed everything and Kim prettied up the yard…it looks great. They definitely rose to the friendship bar that Patty and Jim set, not that they hadn’t already;-) .
This evening we began “un-doing” Gene’s room. All of the employees comment on how homey it is. One assistant suggested we start a show, “Pimp My Room”. OK idea except very few people get to spend 67 days in the hospital. We have our request in for another ocean view room when we return and given what a favorite patient Gene is, we have a good feeling about that detail working out! We are taking all the cards and visit hearts and creating a scrapbook (at Marie’s suggestion!)….the cards have been so uplifting, so filled with love and care and concern and chuckles that it will be inspiring to look back on them. They’ve told us we should be out by noon tomorrow. I’m actually a bit anxious that something might happen to keep his return home from taking place. And although it is not the return in remission that we’d hoped for and imagined, he is still going to be home. And my hope, and I know it is that of the doctors as well, is that this next week will give Gene the rest and renewal he needs to continue the fight for his life. And so we will take what we can get, moment by moment, and hope for the healing power of home.
And Gene says, it might be time for the Curandera, in case anyone knows one…..
Moment to moment, one day at a time. I began feeling better Wednesday but so unsure about my contagion factor that I just decided to show up at the hospital and wait to see his doctor. Dr. Mason was great, and gave me about 45 minutes of his time, to ask all the questions I’d prepared and then some, as well as look down my throat and say that, with a mask, I could see Gene. It had been five days since I’d seen him. It felt like there was a definite decline on several fronts, physical, emotional, spiritual. Doctors and nurses saw it and commented as well. Dr. Mason told me that he recognized that we needed to get Gene home whether his numbers were there or not. The decision was made to have a bone marrow biopsy on Thursday to see why his neutrophil number was still stalled at 0.1, and to see if, perhaps, there were still leukemic cells and that was the reason for the stall.
I was able to hold Gene’s hand through the biopsy. They gave him a good cocktail of Adavan and Morphine and he had a talented third year fellow who made it almost painless (well, the cocktail helped for sure), and then at the end, showed us the tool, the marrow, the other liquid they extracted. Gene thought it was pretty cool, and I was amazed at my ability to not pass out.
After the biopsy, we relaxed together. I’m rarely there midday so it was different. One number that has continued to go up for Gene is his platelet count….so I was able to give him a light massage, something I couldn’t do when his platelets were low for fear of bruising. He told me he felt better just because some action was taken.
On Friday he was really tired, like I’d not seen before. He told me that he thought that he still had cancer, or that his cancer had come back. He certainly looks like someone with cancer, and his weight is down to 125. When he told me all the reasons, temp. spikes in the evening, return of night sweats, fatigue and malaise….I didn’t want to believe it, but what I’d seen over the past few days seemed to confirm it and his reasons made sense. The next morning, the results of the biopsy confirmed that indeed, Gene still has leukemic cells. So two rounds of chemo were not able to put him into remission. The small good news was that his marrow is “stable”. Dr. Mason had told me on Wednesday that we were in new territory and that it was moving a bit more towards the art of medicine, and less of the science, as there are no standards of treatment, no algorithm, for what to do now. They’ve told us all along that it is a difficult cancer, and he reiterated that his “complex cytogenics trumped all”, that would be the same thing they called chromosomal abnormalities at the beginning of all this, and what makes it so difficult to treat.
So, of course, the news was devastating. It seems like every time we’ve come to a fork in the road, it hasn’t gone our way. This coming Wednesday, at their team meeting, the doctors will “pow-wow” as to what should be the next course of action, and he said we would be involved in that decision. The two main choices seem to be giving him another round of chemo with a different, and possibly stronger drug, as his leukemia seems to be resistant to the ones they used, even though those are the standard of treatment. Or, they could give him a regime that would include chemo five days a month, every month, that probably would not eliminate the leukemia but would “hold the line”, to keep him as healthy as possible while we wait for a donor and transplant. Dr. Mason reminded me again that a transplant is the only thing that could save his life. So, as much of a gut punch as this is, we are so grateful for the work that Nadine and Susan and Lori have done, the plans for the donor drive on the SDSU campus this Tuesday, focusing on minority students, as it provides some hope at this otherwise dark moment. Also, over in Grant County, New Mexico, where Gene’s genes are most likely to be found (I think, at least), Sharlene and Joe and Patty and Jerry are working on a story for the local paper, including the on-line part of the drive, and using some of the information and steps that Susan and Nadine laid out for having a donor drive, are trying to organize one in Grant County. More hope. Thank you all so, so much for the energy put into this, for Gene, and for all the others who may benefit from increased participation in the donor bank.
In the midst of all this bad news, Gene’s niece Cindy and husband Jesse (who is older than me so when he calls me “Tia”, I love it, but have to think twice!), came to town to see Gene, and spent the night with me, so I had family support going through this rough weekend. At Jesse’s request I found a few things for him to help with around the house…kind of hard to do as Jim and Patty had left me in such great shape. Cindy worked on the nasturtiam jungle that was once my rose garden and freed my favorite rose from the shadows. So, their presence, company and friendship was yet another gift. They were having so much fun telling life stories at the hospital that they didn’t leave for the drive back to Phoenix until almost 8, and made it home safely.
So as much despair as I was feeling yesterday, today feels completely different. We were told today that he is going home tomorrow, Monday, for “about a week”, and then will return for the five-day chemo, and then return home again (assuming we can avoid the danger of infection while he is an outpatient, or any other complications that might require him to be re-hospitalized). We will need to go into the hospital everyday for a blood draw and analysis, anywhere from 1 to 3 to 6 hours at the hospital, but then back home. So tonight I am happy and excited that Gene is coming home. He’ll get to sleep for many undisturbed hours. Except for reporting to the hospital, we plan to just cocoon for a few days, sleep, watch movies (Wendy’s movies!), eat food that, while meeting neutropenic guidelines, doesn’t have to be chilled, frozen, microwaved…..we can have real meals.
Kim and Susan came over this afternoon and we had a cleaning session…..sorry you missed it Linda, you were at work and it wasn’t much of a party, just a “get it done.” (There will be more opportunities!) I’m so grateful for their help, the house is “disinfected” and “de-Breezy-ed” (as much as possible with her still here!), Susan vacuumed everything and Kim prettied up the yard…it looks great. They definitely rose to the friendship bar that Patty and Jim set, not that they hadn’t already;-) .
This evening we began “un-doing” Gene’s room. All of the employees comment on how homey it is. One assistant suggested we start a show, “Pimp My Room”. OK idea except very few people get to spend 67 days in the hospital. We have our request in for another ocean view room when we return and given what a favorite patient Gene is, we have a good feeling about that detail working out! We are taking all the cards and visit hearts and creating a scrapbook (at Marie’s suggestion!)….the cards have been so uplifting, so filled with love and care and concern and chuckles that it will be inspiring to look back on them. They’ve told us we should be out by noon tomorrow. I’m actually a bit anxious that something might happen to keep his return home from taking place. And although it is not the return in remission that we’d hoped for and imagined, he is still going to be home. And my hope, and I know it is that of the doctors as well, is that this next week will give Gene the rest and renewal he needs to continue the fight for his life. And so we will take what we can get, moment by moment, and hope for the healing power of home.
And Gene says, it might be time for the Curandera, in case anyone knows one…..
Visitors from New Mexico
Last week two of Gene's long time, good friends from New Mexico drove out to spend a few days with him. The visits, laughs and walks were just what the "doctor ordered" and brought a bright spot to Gene's days. Here are photos of his friends:
Joe Vincell with Gene
Jerry Boswell with Gene
Gene's Update 3-22-10
We were so excited about Gene coming home today. Last night he spiked a fever of just over 100.5. He thinks that is just the resurgence of the leukemia cells. Doctors need to be sure it is not the sign of a serious infection. So today he had a CT Scan, a skin biopsy, and no discharge papers. His doctors are aware of his mental health needs, and are in support of him going home for what Gene calls “3 Day Leave”, but not today. As Dr. Miller said today, donor match or not, a serious fungal infection makes a transplant purely academic. They don’t know or necessarily think it is, but are being cautious. Although I feared something might come in the way of this break, I didn’t really expect it….so it feels like a sucker punch. Maybe tomorrow…..and maybe not. Serious emotional roller coaster ride today, serious disappointment. Sorry, just had to share it. We’ll sleep it off, and see what tomorrow brings.
Monday, March 15, 2010
SDSU Bone Marrow Drive
We need your help!
SDSU colleagues and friends of Special Education Professor Gene Valles will be holding a bone marrow registry drive on Tuesday March 23, 2010 and we would like to request you take 15 minutes to stop by and volunteer to be a potential donor.
With only 27% of the donor registry represented by minority populations, he and his family are hoping that all of you will consider becoming donors, especially if you are Latino, African-American, Pacific Islander and Native American.
Being screened for the registry is painless, takes less than 15 minutes, and only involves swabbing your cheek. Donating is also much less difficult or painful than you may believe or have heard. 3 out of 4 marrow donors do so via a simple blood donation method that is painless. We have attached a few documents that explain the registry and donation methods to help answer any questions or concerns you may have. You also may use the URL links below to view these documents and some videos including call for donors by Shaquille O’Neal
Please help find Gene and others a bone marrow match and the opportunity to beat deadly diseases.
Thank you
Shaquille O'Neal has just partnered with Be The Match. Click here to view video
Myths Vs Facts Info Sheet: Click here to download pdf file
Link to an educational video about Joining and Donating: Click here for video
SDSU colleagues and friends of Special Education Professor Gene Valles will be holding a bone marrow registry drive on Tuesday March 23, 2010 and we would like to request you take 15 minutes to stop by and volunteer to be a potential donor.
Tuesday, March 23, 2010
10:00AM– 4:00 PM
SDSU Aztec Center
Free Speech Steps
10:00AM– 4:00 PM
SDSU Aztec Center
Free Speech Steps
With only 27% of the donor registry represented by minority populations, he and his family are hoping that all of you will consider becoming donors, especially if you are Latino, African-American, Pacific Islander and Native American.
Being screened for the registry is painless, takes less than 15 minutes, and only involves swabbing your cheek. Donating is also much less difficult or painful than you may believe or have heard. 3 out of 4 marrow donors do so via a simple blood donation method that is painless. We have attached a few documents that explain the registry and donation methods to help answer any questions or concerns you may have. You also may use the URL links below to view these documents and some videos including call for donors by Shaquille O’Neal
Please help find Gene and others a bone marrow match and the opportunity to beat deadly diseases.
Thank you
Shaquille O'Neal has just partnered with Be The Match. Click here to view video
Myths Vs Facts Info Sheet: Click here to download pdf file
Link to an educational video about Joining and Donating: Click here for video
Update 3-15-10
Sunday: Some neutrophils! Still not as many as needed, but some. For the last five days his counts have been 0.1, 0.1, 0.2, 0.1, 0.1. They warned us that they could go down even after they come up and that is what is happening, so we are trying not to be discouraged after being so very encouraged. Other good news is that his platelet count is up and continuing to go up, platelets help blood clot, so that is very positive.
It was a busy week. We got the first official non-zero number on Wednesday, after about 30 days of 0. We were all so excited, though Gene tried to keep his excitement in check, saying that it could go down. On the 0.2 day, doc told him that at 0.5 they could talk about going home. So even though the low range of normal is around 4.0, we don’t have that far to go. Wednesday night two of Gene’s long, long-time buddies (3rd grade?) arrived for a visit, so that added to the excitement. Jerry and Joe stayed with us and spend quite a bit of time with Gene, including walking the track. They left to go back to NM on Saturday. On Friday I began to get sick….not sure what, old-fashioned tonsillitis (still have ‘em) or a sinus infection. Despite Patty and Jim’s excellent care I still managed to let myself get run down. So Patty and Jim went last night to have dinner with Gene, and say good-bye, and tonight Gene is stuck with hospital food for dinner. I haven’t been since Thursday and can’t go until I’m feeling better. Not good timing as we hope he is about to come home, but hopefully I’ll be feeling better each day. I had more energy and less of the symptoms today so I hope I am on the mend. Will stay home from work tomorrow to be sure, and call my doc if necessary.
But the toughest part of all was Patty and Jim leaving today. It was a sweet sorrow, they’ve shown me such an incredible level of love and caring. They’ve done a million things for me, for Gene, but the top of the list just has to be the sharing of the emotional challenges, sharing the fear, the grief, the worry, the small steps toward recovery, and with Patty around, always included is sharing the laughter. I know they will still be sharing the roller-coaster ride from a distance, and we are just so grateful that they could be here for as long as they were.
I feel like there is so much unacknowledged gratitude that we’ve accumulated. All of your messages of caring and concern, the incredible “Dinner Delivery” gifts, Kathleen’s cookies!, music and food, work on the Donor Drive, and all manner of tangible and intangible support. Thank you for hanging with us.
Some of the best news, besides the neutrophils, is the status of the Donor Drive that is being organized by Susan and Nadine at SDSU. As soon as I have the electronic link I’ll send it. That should be any day now, as the flyer with Gene’s photo is printed. It is scheduled for Tuesday, March 23, at SDSU, and there will also be an online drive that can include anyone anywhere in the country. So as soon as I have that info, I’ll send it out, so you can pass it on to anyone, everyone you know. The donor bank is 73% Caucasian and only 9% Latino, so that is the group we hope will step up and volunteer to become donors. Ethnicity does matter in this case.
Monday: Gene’s count is still 0.1, and he is discouraged. The doc on duty now is the one I like the best, the one in charge of the program. They are all good, and all knowledgeable, but Dr. Mason has the most comforting manner. He did tell Gene today that a bone marrow biopsy was in his near future, not today, but this week, so they could see what “the factory” is doing. It is day 61. Can you even imagine? We were so encouraged last week when the numbers went up….and then stopped. I keep thinking about the what and why’s….maybe he had too much excitement last week, maybe he shouldn’t be taking those long walks, pushing himself…maybe he needs to start eating more meat….maybe, what if….
And I’m sicker today than I was all weekend. I have a doc’s app’t. this afternoon. Maybe it is strep and they can give me antibiotics….first time I ever wanted that! Susan is checking in on me, Patty left the freezer and fridge well stocked, so I’m okay….just can’t go see Gene, have to offer empathy over the phone. He says it is good to take a visitor break and maybe nap…maybe that will help.
It is incredibly beautiful spring weather here in SD….far from the storms that were happening as we started this journey. Now it is flowers and green and sunshine and warm. Just not weather for being sick….so, here’s hoping that healthy cells will bloom and Gene will soon be sitting right where I am now, looking at flowers and birds, at home.
gail
It was a busy week. We got the first official non-zero number on Wednesday, after about 30 days of 0. We were all so excited, though Gene tried to keep his excitement in check, saying that it could go down. On the 0.2 day, doc told him that at 0.5 they could talk about going home. So even though the low range of normal is around 4.0, we don’t have that far to go. Wednesday night two of Gene’s long, long-time buddies (3rd grade?) arrived for a visit, so that added to the excitement. Jerry and Joe stayed with us and spend quite a bit of time with Gene, including walking the track. They left to go back to NM on Saturday. On Friday I began to get sick….not sure what, old-fashioned tonsillitis (still have ‘em) or a sinus infection. Despite Patty and Jim’s excellent care I still managed to let myself get run down. So Patty and Jim went last night to have dinner with Gene, and say good-bye, and tonight Gene is stuck with hospital food for dinner. I haven’t been since Thursday and can’t go until I’m feeling better. Not good timing as we hope he is about to come home, but hopefully I’ll be feeling better each day. I had more energy and less of the symptoms today so I hope I am on the mend. Will stay home from work tomorrow to be sure, and call my doc if necessary.
But the toughest part of all was Patty and Jim leaving today. It was a sweet sorrow, they’ve shown me such an incredible level of love and caring. They’ve done a million things for me, for Gene, but the top of the list just has to be the sharing of the emotional challenges, sharing the fear, the grief, the worry, the small steps toward recovery, and with Patty around, always included is sharing the laughter. I know they will still be sharing the roller-coaster ride from a distance, and we are just so grateful that they could be here for as long as they were.
I feel like there is so much unacknowledged gratitude that we’ve accumulated. All of your messages of caring and concern, the incredible “Dinner Delivery” gifts, Kathleen’s cookies!, music and food, work on the Donor Drive, and all manner of tangible and intangible support. Thank you for hanging with us.
Some of the best news, besides the neutrophils, is the status of the Donor Drive that is being organized by Susan and Nadine at SDSU. As soon as I have the electronic link I’ll send it. That should be any day now, as the flyer with Gene’s photo is printed. It is scheduled for Tuesday, March 23, at SDSU, and there will also be an online drive that can include anyone anywhere in the country. So as soon as I have that info, I’ll send it out, so you can pass it on to anyone, everyone you know. The donor bank is 73% Caucasian and only 9% Latino, so that is the group we hope will step up and volunteer to become donors. Ethnicity does matter in this case.
Monday: Gene’s count is still 0.1, and he is discouraged. The doc on duty now is the one I like the best, the one in charge of the program. They are all good, and all knowledgeable, but Dr. Mason has the most comforting manner. He did tell Gene today that a bone marrow biopsy was in his near future, not today, but this week, so they could see what “the factory” is doing. It is day 61. Can you even imagine? We were so encouraged last week when the numbers went up….and then stopped. I keep thinking about the what and why’s….maybe he had too much excitement last week, maybe he shouldn’t be taking those long walks, pushing himself…maybe he needs to start eating more meat….maybe, what if….
And I’m sicker today than I was all weekend. I have a doc’s app’t. this afternoon. Maybe it is strep and they can give me antibiotics….first time I ever wanted that! Susan is checking in on me, Patty left the freezer and fridge well stocked, so I’m okay….just can’t go see Gene, have to offer empathy over the phone. He says it is good to take a visitor break and maybe nap…maybe that will help.
It is incredibly beautiful spring weather here in SD….far from the storms that were happening as we started this journey. Now it is flowers and green and sunshine and warm. Just not weather for being sick….so, here’s hoping that healthy cells will bloom and Gene will soon be sitting right where I am now, looking at flowers and birds, at home.
gail
Monday, March 8, 2010
Day 55
Gene’s update: Day 55
What can we say? How lucky we are that Gene hasn’t had any complications during this long wait for him to grow his own white (and red) blood cells; how lucky we are for all the love and attention that continues to surround us; how lucky we are for such good care in such a nice hospital, with such a great view; how humbled we are by how many people out there are praying for Gene, sending positive healing energy our way……any other good ideas for how to keep Gene’s spirits up, feel free to send along!
He actually is doing great, considering. But boy oh boy, are we both tired of this hospital routine and so badly want to go home.
Among the other highlights: If you haven’t been on the blogspot, (http://www.genecentral.blogspot.com) there are some cool pics taken by Patty. Doc let Gene go outside for a walk, I think he has had four now, during the day. He walks the track over by the labyrinth at a good clip for about 30 minutes. He has really good energy, and our hope is that the sunlight and fresh air will help him grow those neutrophils. Doc did start talking some discouraging stuff around mid-week….talking aplastic anemia, empty marrow….floating the possibility that maybe he wouldn’t grow cells…..that the treatment, being a bone marrow transplant, would be the same. And we’re thinking….will he ever go home? But he also said that having given him two rounds of chemo back to back with no chance for his marrow to recover, it was not unusual for it to take so long. So a little window into the fact that medicine is both art and science and sometimes they just don’t know. It is more comforting, though, to have the illusion that they do know it all.
Then on Saturday as we were leaving for our walk, Doc called us over to tell us that they looked at a blood sample under the microscope and that there were “some” neutrophils. We got really excited. Then on Sunday they did it again under the microscope and there were no neutrophils……random sample of blood…..who knows. One number is going up (percent neutrophils), they say it isn’t as important, as the number they are looking for (absolute neutrophils), but right now its sounding like good news to us.
Gene had his remaining thin and wispy hair shaved off….or more accurately, the CNA shaved it…he actually looks younger. He’s got quite the hat collection going, comical and functional.
Patty and Jim are leaving at the end of this week. They have been here for two months! They have a college student to check in on, a garden to plant, parents to check in with, and their own lives to resume. They are doing it all right to the end…..I know I will pick up the pieces of my life and resume taking care of myself, but we have been so blessed. They have helped in more ways than can be named. They have helped me transition to this new life….and held my hand through the process. Hopefully, Gene will be home soon and that will make things easier.
And one more really important thing: Friends from SDSU, Susan and Nadine, are working on organizing a Bone Marrow Donor Drive at SDSU with Gene as the “Poster Boy”, literally. Although you cannot donate directly to Gene, during the drive there will be opportunities to get tested, it is as simple as a cheek swab. Susan reports that they (Blood Bank folks who organize it for the Bone Marrow Registry) seem to be encouraging folks to really use all means of networking (facebook, etc, etc) so that even people who can’t make it to the drive can contact an email address and get sent a kit. We are not sure yet if that is only for people in the SD region, but we will put the word out as soon as we know. It may or may not benefit Gene directly, but our hope is that we can recruit some students and others whose HLA type may match Gene’s more directly as ethnicity does matter, and he does not yet have a donor. And even if it does not benefit Gene, it is a worldwide registry, so it will benefit someone, or many others. So, we’ll be keeping you posted on that. I keep thinking that somewhere in Grant County (or Deming) there is someone who shares some of the same Genes as Gene! But maybe, hopefully even, right here in San Diego County.
Once again, I hope that our next update has the coming home news….in the meantime, pray for neutrophils, pray for a donor.
Visitors Welcome!
The timing is good for Gene to have visitors.
Afternoons are best, except for 4:30 to 5:00.
Afternoons are best, except for 4:30 to 5:00.
Saturday, March 6, 2010
Thursday, March 4, 2010
Wednesday, March 3, 2010
The Great Escape
On Tuesday Gene, Jim and I went outside for a great walk around the track. Gene had us huffing and puffing for 30 minutes! We had to leave a cell phone number at the nurses station but no one called us back, so we hope to be able to do it again today. The weather has been perfect for walking, around 61°.I have a few photos of the walking labyrinth that I will try to post next time. Patty
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