Saturday, June 26, 2010

In Memoriam

Eugene “Gene” Valles

Dear College of Education Faculty, Staff, and Retired Faculty,

It is with great sadness that I inform you of the passing of Dr. Gene Valles early Wednesday morning, June 23, 2010.

Dr. Valles received his BA in Special Education with a K-12 teaching credential from the University of New Mexico (UNM) in 1976, an MA Degree in Special Education with an emphasis in Learning Disabilities and Bilingual Special Education in 1981 from UNM, an Education Administration license from UNM in 1991, and a doctorate from UNM in Special Education/Learning Disabilities in 1992. He was an Army Veteran who prior to coming to SDSU in 1993, worked as a public school teacher in special education for 17 years, working at the elementary, middle, and high school levels.

Dr. Valles had over 30 years of teaching experience in special education working as a classroom teacher and teacher trainer. He joined the faculty of the Department of Special Education in 1993, and accepted a permanent appointment in 1996. Dr. Valles worked as a Program Coordinator of the Bilingual Special Education teacher preparation program at SDSU from 1993-1998. He also served as Practicum Coordinator and Program Coordinator for the Mild/Moderate Intern Credential Program. He later served as Department Chair of the Special Education Department.

Dr. Valles was the consummate professional who was committed to his passion for teaching. He was an expert teacher who had a direct impact on the professional preparation of countless educators and dedicated his professional life to improving instructional practices that led to better outcomes for individuals with disabilities. He presented at many regional, state, national, and international professional conferences. His passion was preparing teachers to best serve students with disabilities, particularly students from culturally and linguistically diverse backgrounds. In 2007, Dr. Valles collaborated with colleagues from the Department of Policy Studies in Language and Cross Cultural Education in writing and securing U.S. Department of Education grant funding for the ALAS program that resulted in the training of fully credentialed teachers in both bilingual and special education.

Dr. Valles loved life and his gentle and loving spirit touched all who had the pleasure of knowing him. He enjoyed sailing and gardening with his wife Gail, spending time with friends, and felt most at home at their New Mexico farm, No Cattle Company.

Dr. Valles is survived by his father, Manuel Pacheco Valles, age 97, sisters Emilia Morales, Maria Tovar, Teresa Delgado, and Victoria Mora-Valles and many, many nieces and nephews and his wife, Gail Moriarty, and her family.

A private service for Dr. Valles will be held at his farm in New Mexico. In addition, a celebration of his life will take place on SDSU's campus on:

Date: Wednesday, July 14th. 2010
Time: 3:30 p.m.
Location: Parma Payne Goodall Alumni Center
San Diego State University
55th Street and Hardy Avenue
San Diego, CA 92182
Parking available at no charge: Parking Structure 5
(adjacent to the Alumni Center; enter from 55th Street)

In lieu of flowers, the immediate family requests that contributions in Gene's memory be sent to:

Checks payable to: Campanile Foundation
Reference: Gene Valles Memorial Scholarship
The Campanile Foundation
San Diego State University
5500 Campanile Drive
San Diego, CA 92182-8030

Or:

Donations to the Leukemia & Lymphoma Society
at http://www.leukemia-lymphoma.org
or by calling (888) 773-9958

You may send notes of sympathy to Gene’s family to:

Contact Jose Luis Alvarado at alvarado@mail.sdsu.edu for more information.

The College extends its condolences to Dr. Valles' family during this difficult time.

Respectfully,


Ric A. Hovda
Professor and Dean
College of Education
San Diego State University

Thursday, June 24, 2010

Celebrating Gene: New Mexico Style

We have been able to pull the preliminary details together to have a memorial celebration for Gene at No Cattle Company this Sunday, June 27. A deacon will lead a Catholic service with communion at the San Juan Mission Church right there in front of the farm. After that we can gather down at the farm and continue a Gene-style remembrance, helping to send his spirit soaring from the place he loved most on earth. Since potluck seems to be the style of farm parties, if we could continue that tradition, that would be appreciated.

The church service will begin at 3 PM. The farm celebration/memorial will continue immediately afterwards and go until….. Most of you know how to get to No Cattle, but if it is your first visit, or you’ve not been there in awhile, the physical address is 2290 Hwy 61, San Juan NM 88057. You can contact Patty Dana for further information and directions, questions, suggestions on places to stay; her cell is 505-980-0578.

The plans for the San Diego Memorial are not yet in place other than knowing it needs to be in the next few weeks. Several of you have shared calendar constraints and I’m glad to know those so continue to share them. A weekday late afternoon-evening might work best and I’m open to any suggestions on a location. I know that Gene touched the lives of a lot of his students and I’d want time to get the word out to them.

GeneCentral is not going away in the near future. As I’ve told several of you, my recovery will take time and I will need to tap into all of your many offers of support over time.

Wednesday, June 23, 2010

A Life Well Lived: July 13, 1949- June 23, 2010

To all of you who have been a part of the web of energy, love, prayer and healing,

Gene passed away at 4:00 AM this morning, June 23. We were blessed with nurse angels who helped us with the transition and both my sister Esther and Gene's sister Emilia were there with us. I'm sorry that some of you are reading this in an email or blog, but bad news travels fast as they say, so perhaps you've already heard. At this point, only five hours later, I know only that I am exhausted and that there are already paperwork processes to be completed. Gene's wishes were to be cremated and to keep it simple. I would like to have a service in New Mexico, where his heart and family reside, hopefully a mass at the little church right in front of the farm, and a celebration at the farm. We would also plan a memorial service in San Diego for the friends and colleagues, shortly after that. Right now we are trying to make it happen for this coming Sunday, but not at all sure that will work. Thinking weekend for most folks is best but all those things are up in the air. Will keep you posted as details develop.

I am so sorry for all of our losses. Gene and I talked about one of the many lessons of this experience is how much love we live with, take for granted, don't always express, and even, in Gene's case, was sometimes hard to believe was even possible. Your love has sustained us, and Gene is now pure love, though the human form is preferred by us while in our human state.

Gene fought so hard and at one point expressed sorrow for the people he was disappointing because he wasn't going to make it. I did my best to assure him that we all saw him as a hero, a warrior, who endured more than can even be imagined. The last two months were torture and the last two weeks he struggled to die and struggled to stay alive and finally gathered the strength to die. Only his suffering being relieved makes his passing the least bit tolerable.

I look forward to hugs and talks, and stories of Gene, with as many of you as possible, in the very near future. Knowing that we are sharing this sadness as well as the joy of having known and loved Gene, provides comfort for us all. Thank you for sharing this difficult journey. With love and gratitude,
Gail

Tuesday, June 22, 2010

Fighting On For Today

Gene said this morning when I updated him that he wants to continue the fight. At least that's what I think he said and he is cooperating more with therapy. The man, I've always suspected, has Pancho Villa's blood running in his veins and I think now, Geronimo as well. He has an additional complication today in that his picc line that delivers all life support has pulled out a bit. His liver numbers remain exceedingly high. Esther and I are going to visit the San Diego Hospice inpatient facility this afternoon. Hope remains on that thread.

Monday, June 21, 2010

Gene’s Update: Summer Solstice

Given that I am of Irish and Swedish descent, I do have some pagan blood running through me, and this day is usually among one of my personal favorite “holidays”, Midsommar in Sweden. Since we are back in the Bone Marrow Transplant unit, just a few doors down from our last room, we still have an ocean view. The typical June Gloom in San Diego parted at the coast and the sun came through for a few hours while we napped.

We are back on 3 North not because of any improvement but because one doctor was kind enough to tell us that if Gene were to be re-intubated, he would not likely come off the ventilator. So, not wanting to die that way, the decision was made easier to go to “DNR” status, and once that is official, you are not an ICU candidate. No middle ground, the ICU doc said, either “full-code” (all aggressive measures to save your life) or not ICU. He also told me when I asked for some hope that he didn’t deal in hope, just the data. Inter-hospital politics allowed us to remain for a few more days. We spent a 17 day/night nightmare there I think. The last 5 or so I stayed with him all night. It is so so not peaceful. At least on 3 North, Gene is in the hands of tender, loving nurses and staff with whom we’ve built relationship over these nearly six months. He is really still an ICU-needs patient and the staff struggles to meet all his needs.

Nothing has changed significantly since he came off the ventilator on June 4 or 5. I look for small signs that his lung function is improving, like him not “de-sating” ( oxygen saturation in blood dropping) when he is moved, or coughs, or the decrease in the amount of time that he needs both the high-flow nasal canula oxygen at 30 liters plus the “non-rebreather” oxygen mask, and that has improved. He can get by most of the day on just the wind-storm of nasal canula, nights are really rough. Really rough. That is when he asks repeatedly to die, to end it all. His “life” is really hell. He has been bedridden so long that he no longer has much muscle function. He can lift his hands and wiggle his feet and breathe. Most of his life energy goes into breathing, with 100% oxygen being blown into his nose. His liver function is quite compromised and he is very jaundiced. He has “skin breakdown”, blistering, other skin tears, over most of his back, and all of the area from the waist down. His “life” consists of being cleaned which is excruciating with all the skin problems, sleeping in exhaustion from that, being pricked three times a day for the prednisone-induced diabetes and then most of those finger pricks being followed by insulin shots in the stomach. Severe stomach cramps precede bloody bowels that are probably graft versus host disease in his gut or cytomegalovirus. Cleaned again. They did insert a feeding tube maybe 5 or 7 days ago, he seems to be tolerating it, though maybe that is causing the bloody bowels, they don’t know. The word they use a lot is idiopathic which is medicalese for “we don’t know what causes this”. He gets respiratory therapy 4 times a day, just a nebulizer, and has rejected speech therapy to help him swallow for the last 5 days or so, and has rejected being moved in any way to reduce bed sores. They had a high tech bed for awhile for his skin but he didn’t sleep well being moved all the time, and there are concerns about the hydraulics and the oxygen-rich environment. His numbers don’t change much. Lungs and liver are very compromised, damaged, gut is inflamed, skin, well the nurses say they’ve seen worse, but he is seen by a wound care nurse daily, except weekends, when it is a very bad time to be in need of medical support.

He sleeps in the day and is awake most of the night. I’ve been spending the last 7 or 8 or I can’t remember nights with him, trying to comfort and meet his needs that even in ICU were only met if they were extreme. At my point of greatest exhaustion, daybreak, he is most interested in talking and I just am so beyond that I can’t. But I can push my cot right up next to his bed and rub his tummy, like a baby and that shows on the monitor that it drops his heart rate. He is on a good painkiller, Fentanyl, which leaves him pretty cognitively intact but mostly sleepy…..except in the middle of the night. In the night he begs to die, but in the few hours that we can talk somewhat clearly during the day, he is not as sure, asking me what I think.

The ICU team was all for hospice and give it up, the oncology docs believe that because he has been strong enough to survive this long that he has a chance of making it through this valley of death. I am desperately torn. I have had hospice consults the last two days. I think if there is no change in the next few days, and if Gene wants to give up the fight, then I will begin facilitating that process. We both pray for some sign that things are going up or down and it all remains the same. He actually no longer has energy to pray aloud. He has been anointed three times, the most recently by a Catholic priest, Msr. Sheheen, I guess it is no longer called Last Rites but it was comforting for Gene, as was his visit with an Episcopal priest, Chris Chase, who used to be my mom’s priest in Tenn.

The visit while still in ICU, from his nieces, Christina and Bobbie and sister, Emilia, also felt supportive to him and definitely to me. My sister Esther covers the home front and hospital respite for me. Friends continue to provide whatever support can be offered given where we are…..food and errands, Breezy care.

I told Gene two weeks ago that he did not have to hang on for me, that it was between him and God. And that has provided me some solace, but yesterday I realized that it is not really completely truthful to say that it is “in God’s hands” because he is basically on life support, except for breathing. If the nutrition and infection control medications were removed…..then it would be completely in God’s hands. And the doctor told me that could be hours, days or weeks till an end. So, no answers.

Because his liver is not working well, the Fentanyl builds up and he has become less and less responsive, making it harder and harder to discern his wishes…..though in the middle of the night he makes them loud and clear. It does not seem likely that he could come home, though that is what he wants, given how acute his situation is. I’m still trying to get a grasp of what the interface of hospice and hospital “comfort care” is. Although there is a hospice facility, I cannot imagine the trauma of moving him, and he has so many loved caregivers at the hospital. But once we sign on a Hospice company, it may mean that after a time he needs to be moved. In any event, he would remain on oxygen and pain medication.

And, the prayers and hoped for miracle could come at any time…..he is just suffering so so much, how much longer can he be asked to live like this if there is no change? The thin thread of hope and the thin thread of life are still intact. And already, the daylight begins getting shorter. We have been crossing this valley of the shadow of death for so long.

Thursday, June 17, 2010

Hi Gene and Gail

Given that I don't want to bug Gail or Gene, here's a short video greeting. Love you guys. JLA

video

Saturday, June 12, 2010

Guardedly Optimistic

June 12 Already.

I wasn't going to post, but it is an upward trending two days and I started writing this in an email and decided to send it out to all. It is in God's hands, I've come to that peace, and I also know that the appeal process is working.

I am exhausted beyond belief but have more strength than Gene right now so I'm not in conservation mode despite what everyone tells me, it is all for Gene.

If we can get him to a resting place, I will rest a bit as well.

Yesterday he told me he wanted to give up, didn’t think he could make it through the day. He was spiritually and emotionally broken, and exhausted beyond imagination. After a week off the ventilator he is still not strong enough to be cleared to swallow on his own which means the nurse (not even me) is in control of every little ice chip and if he coughs one, that’s it. And that sucks so huge. Many docs and nurses, chaplain and social worker, came in yesterday to tell him that it was not time to give up. That he is on a plateau and given where he was a week ago, that is huge. And, importantly, that they will tell him if it is time to switch to comfort care only. Gene asked his oncologist how to get hospice started and Dr. Mason told him that he could not sign hospice papers because everything he has is treatable and not terminal. They started him on prozac. I spent the night at the hospital with him, an even more difficult task in icu as there is not option to put a cot in the room so I was in the very uncomfortable chair that I'd previously complained about. (One of the many lessons….things can always be worse, don’t complain but be thankful for what is. Thought I knew that one, but guess not.) But I could talk to him and hold his hand when they woke him every few hours and he told me this morning that helped tremendously. My sister is there now and she said he is doing better in all ways, numbers are good, they are going to start some very limited physical therapy, and hopefully be able to get him on a "bi-pap" machine for nights and naps to give him some rest as breathing is consuming all of his energy. Docs hope to see results of new drug working on Monday. I am taking valium so it could be the drugs talking or blocking but yesterday as he was telling me it was the end, I was looking at him stronger, talking more, ventilator wounds healing....looking better than he had in weeks, and I just didn't believe it.

The climb out of this pit will be long and arduous and we could still slip and fall, but I am, to use another doc's words, "guardedly optimistic" and so so tired.

Prayers are for cmv virus to be cured, liver to improve and strengthen, GvH Disease to be addressed by new drugs, skin to heal on his torso, and Gene's spirit to be supported. And strength from somewhere left inside me to be accessible to me, or more given.

I think Gene’s sister Emilia and neice Christina are due in town on Sunday, which will be a perfect time for more family support…..don’t want my lifeline Esther to burn out and she is doing frontline work and home support. Keep the prayers coming, and thank you for them. I got to kiss Gene on the lips yesterday. Everyday is a gift, no matter how difficult.

Thursday, June 10, 2010

June 9, 2010

To breathe, to drink

Gene was “extubated” (taken off the breathing tube), on Saturday afternoon, not long after his family left to return to NM. His time on the ventilator was made more difficult because of his challenged liver. Usually a patient would remain sedated until shortly before coming off the vent, but because Gene couldn’t really metabolize the sedative (propofil- made famous by Micheal Jackson), he spent six hours one day, then 12 then almost 24 sort of non-sedated, but still intubated, while he cleared enough to follow directions. Fortunately, he doesn’t remember any of it. Originally he said he would never do that again, but has since changed his mind and said he would be re-intubated if necessary. Which is a good thing, otherwise they would not really keep him in ICU and he needs to be there.

There is progress with his lungs, though it is baby steps. He still needs significant oxygen support and respiratory therapy every four hours. His liver has remained pretty much the same, jaundiced, sluggish. He is alert, and when he can be on the nasal oxygen alone, without the addition of the mask, we can talk a bit. He is very, very weak. He is receiving therapy to learn how to swallow and it is painfully slow….the therapist can’t give us any timeline at all when he might be cleared to have a drink of water. He was able to swallow spoons of “thickened water” today, but all he can have is those teeny sponges on a stick (if you’ve ever had one coming out of surgery) to suck on for moisture. He said he was hungry but his stomach wouldn’t tolerate the feeding tube, wouldn’t process what was put in, so he is just on IV nutrition. He doesn’t remember his family’s visit. Fortunately for his dad, Gene became more and more responsive each day he was here, and when MP left he told me that Gene would get better. And Gene has gotten stronger, and we have been able to communicate with each other, and that is a blessing and a gift.

He has “significant” Graft versus Host Disease (GvHD) in his liver, and possibly his skin. They don’t think at this point GvH is what is causing the lung problems. His skin is just blistered all over and he lays on cotton pads to absorb the weeping. The main drug they have for fighting that effect, where the new donor cells see his organs as foreign and attack, is the drug that caused him two rounds of kidney failure. They have been using steroids to suppress it, but it is not really working and has lots of other unwanted consequences. So they came up with another set of medications, with Sirolimus (Rapamune) as the anti-GvH drug, to go along with all the prayers that we hope will save him. The ICU docs really don’t talk to me at all, and the nurses are very guarded. I have much less information about his condition than I did on the Transplant Unit. And the truth is, his transplant doctors just do not know what is causing all of the many problems, or as they say, “transplant-related toxicities”. However, neither the transplant doctors nor the ICU doctors are ready to give up, and Gene is fighting to the end.

One of my greatest struggles this week, besides seeing Gene so debilitated and feeling so helpless, is what does “the end” mean, between remaking an immune system and all the aggressive life-saving measures that an ICU can use? How do you know when enough is enough? How do you carve out a piece of peace?

Patty and Jim left yesterday, but continue to bear the incredible emotional burden we’ve shared these five months. I am so fortunate, and so grateful that they could be my family through this, and so glad they can return to pick up their lives at last. My sister Esther is here with me now, maintaining a lifeline to home. She always finds a positive way to look at some aspect of these non-stop assaults Gene is enduring, and that helps keeps a bit of sanity afloat.

So, the good news: He is off the ventilator and breathing on his own with significant but non-invasive support. His only real pain, he says, is when they have to move him every few hours, and when they have to clean his skin. He told me that he is not really suffering that much. He can talk, and now swallow under therapist supervision. He seems more alert, and stronger than he was when in came in to the ICU eight days ago. He has good spirit and wants to continue to fight. We can still communicate our love for each other. He has a tremendous network of prayer and love. His mouth is healed enough that he smiled today.

We will both emerge from this as changed beings, though it is not clear when or what that may look like.

Wednesday, June 2, 2010

Gene’s Update: Wed. June 2, 2010 Day +40 (I think)

Help Us Keep Hope Alive

Gene is fighting so hard. He has had such an unbelievably brutal struggle. We’ve enlisted even more modern western medical technology with yesterday’s admission to ICU. Gene and I made the decision to put him on a ventilator after several days of difficulty keeping his blood oxygenated. That necessitates heavy sedation, so they say he can hear, but not respond. He’s fighting a pneumonia, which they cannot determine the cause of. He is retaining, once again, a lot of fluid. He’s been subjected to invasive and external tests, scans, probes and pokes. He still has the hemolysis syndrome where his platelets and red blood cells become damaged, which build up in his blood and back up in his liver and gall bladder. His liver and his lungs are currently his most challenged organs.

It is hard to see him all hooked up, and many times my hope fails and the darkness and fear intrude. I visualize the web of love and support and light that exists for him from all of you and I try to imagine that energy, all the prayers, encircling him. We’ve been blessed with miracles on this journey, please help us pray for a few more: For the hemolysis to resolve, for his liver to withstand the onslaught and clear, for his lungs to persevere and for Gene’s will to live to remain positive and strong. And then there’s me…..thank you for your prayers for strength. It comes in surges. I dip into despair, but then find some strength, some energy to continue….as if I had a choice.

Gene’s family is arriving to cheer him on. Three of his sisters will be here today, and they’re bringing his Dad, MP, age 97. It will be very hard on MP, and his hearing aid is broken again, making it even more difficult to help him understand what is going on. But it is better for him to be here than not, and hopefully it will provide a boost for Gene. I’ve made it clear to Gene, I hope, that they are not here because we’re giving up, but because he needs a reminder of what he is fighting for.

Yesterday, in the midst of what felt like the worst day of my life (a criterion that keeps evolving), the transplant nurse brought over a letter from his donor. I’ve been so absorbed with all of this, thinking that later, Gene and I would compose a letter together once he’s home, that we’d not even communicated our gratitude to her yet. The results of his marrow biopsy are all in and official: the transplant was a success in terms of engrafting, growing new cells, and his marrow is already 100% her DNA. And, there is no evidence of the chromosomal abnormalities that made his leukemia so hard to treat. I keep reminding him, he no longer has leukemia; he just has to survive the treatment.

The donor search process requires that we remain anonymous to each other for a year, but I want to share her words with all of you:

Please forward this to my donation recipient.

Hi,

I just wanted to say that it was an honor to donate and give you life well deserved. I wanted to let you know that I pray for you every day. I hope you are doing well and recover very soon. May the Lord be with you always and protect you and heal you.

Your friend,

Your Donor

Thank you for your continuing prayers for miracles, for healing and for strength.