Return to Stanford

Sometimes it feels like Bill is a ping pong ball bouncing back and forth between doctors and hospitals. Since the last post in July, he has been on an oral chemo-type drug on an out-patient basis at UCSF. Unfortunately this clinical trial has failed to get him into remission, which has been the goal needed to get to bone marrow transplant. His doctor there sent him back to Stanford for a consultation with the transplant doctor, and after meeting with us he reluctantly agreed to move forward even though Billy is not in remission. It is not an ideal situation, but given the fact that a donor is ready to go and nothing has worked so far Billy is determined to take this next step. He has appointments at Stanford this week, UCSF next week and then will enter Stanford for the procedure in October. First will be chemo to clear the bone marrow, followed by stem cells from the donor. He will be in the hospital for about a month and then followed very closely as an out-patient. We are ready for something positive to happen to turn this journey around! Keep up the prayers! In the meantime, Billy has continued to keep in the loop at work, join fellow marathoners on Saturdays at San Jose Fit (walked a mile last week!) and enjoy some time away at the lake. Tonight he is at the Giants game with Robert enjoying a 7-1 win over the Rockies :) To be this active while in the grasp of this disease has astounded his doctors and no doubt helped fortify his determination to beat this. There are so many good things on the horizon for us and our families that we can't wait to get this behind us. Hang in there with us and we'll keep you posted on Bill's progress. Lisa

UCSF Bound

Lately it seems we are battling it out in a boxing ring vs running a marathon, with the rounds scored cancer 2 Billy 0. We got the disappointing news last Friday that the most recent chemo failed to get Billy into remission. It was especially hard because he had been feeling so good and his blood counts were all slowly but steadily improving. But no matter how many times he gets knocked down he gets right back up. Dr. Madeiros recommended participating in a clinical trial at UCSF. It is out-patient, oral chemo that also targets the flit3 reactor which resides on Billy's cancer cells and has made things so troublesome. So good-bye Stanford, hello Helen Diller Family Cancer Center. We requested continued oversight by Madeiros and he agreed to collaborate with our "new" hemotology/oncologist. Bill travels to UCSF on Wednesday for a diagnostic work-up to ensure he meets all the clinical trial criteria. In the meantime he will continue to get labs done locally to monitor his platelets and hemoglobin counts. Needless to say he was really bummed about missing the W2W and hosting the after-party yesterday, but will be back in full force next year. Thank you to everyone who ran thinking about him. So, we are extremely hopeful that "third time will be the charm" for Bill's struggle against this horrible disease. For those of you who may want to consider becoming a bone marrow/stem cell donor, please see the info below related to an upcoming drive at Palo Alto Medical Foundation. Date: Friday, August 17, 2012 Time: 10:00 a.m. – 2:00 p.m. Where : Palo Alto Medical Foundation 795 El Camino Real Jamplis Building 3rd Floor Hearst Education Conference Rooms B & C Palo Alto, Ca Registry Requirements: Be between the ages of 18-60 years old. Be in general good health. Be willing to donate to any patient needing a transplant.

Pit Stop

Thank you to those of you who have been waiting so patiently for an update. We have just been in a holding pattern the last couple of weeks to see how Bill's body reacted to the most recent round of chemo. He unfortunately experienced more negative side effects this time around and had to go for over a week on IV nutrition (no food allowed), had a blood infection and just up and down with problems. He stabilized this week and was discharged Thursday. He will get his blood checked every couple of days at Dominican to see if he needs a transfusion or platelets. Today everything was OK so that was positive. He is doing well at home and had an old buddy from SoCal drive up to spend time with him which he thoroughly enjoyed. He can't be out in the sun due to his medications or in public without a respirator so is relaxing at home. His daughter Brenna took him for a drive by the beach today so he did get a chance to get out. Next step is a bone marrow transplant as soon as his body shows he is in remission. Four donors have been identified as potential matches across the country so we are hopeful this can happen soon. Until then just need to keep him healthy. As always, please keep Billy in your prayers. This journey still has a long road ahead. Lisa

Waiting game

Good news all around this week. Billy's bone marrow biopsy came back "empty", which means the chemo has done it's job so far. Now he is getting shots of Nupogen to jump start cell regeneration. We are in a waiting period to see what those cells look like. PRAY FOR HEALTHY CELLS! His stomach problems seem to have settled down as well. He has not been allowed to eat anything except ice chips for about the last week; is getting his nutrition through an IV. They are letting him have clear liquid beginning today. Hopefully soon he can progress back to a regular diet because we all know how Billy likes to eat good,flavorable and spicy food. He enjoyed a Father's Day FaceTime session with his son Brady and visit from Brenna today. Brady is working 7 days a week these days and couldn't make the trip out from Las Vegas. He had a visit yesterday from his friend Kim Broderick who made him a personalized card that really brought a smile to his face. A friend from southern California came up last weekend and tomorrow his old boss from that area is also coming up. Lots of love and support is very evident! His dad, Bill,and mom, Barb, hope to make the trip from Redding as soon as they can. Sister Shannon is hopefully coming back up soon as well. Bill has been working as he can, watching the NBA finals (go OKC),the Giants and golf. Lots of sports to keep him busy! His friend Robert comes all the time and between the two of them they keep the Stanford staff cracking up. Keep good thoughts coming our way. If you have any interest in becoming a bone marrow donor (Bill will need a transplant once he's in remission) go to www.bethematch.com. It is very easy - they send you a kit to swab some cheek cells and an envelope to send them back. Unfortunately his sis was not a match so now they will search this national registry. Lisa

One Step Forward, Two Steps Back

I don't run marathons, and can only imagine the stress and challenge such an ordeal places upon one's body. Wanting to stop but yet knowing you want the adrenaline rush as you cross the finish line. Knowing that through perseverance, and against all odds, you accomplished your goal. All of this is very applicable in Billy's "marathon" against leukemia. His body was put through very harsh conditions during the most recent round of chemotherapy, and complications almost forced him to have emergency surgery to remove ischemic portions of his colon and bowel. The surgeons decided his body was not stable enough, so trying to settle things down with new medications and liquid diet. He is feeling better but still waiting for results. They haven't been able to pinpoint the cause yet, but think a blood infection may be the culprit. It just seems so never ending - hopefully now that the chemo cycle is finished his poor body can return to some semblance of normalcy. Bill appreciates all the prayers, good thoughts and visits. His sister Shannon is here for a few days and a tremendous help and support. It really brightens his day so thank you all very much. Lisa

Hello Plan B........

Just when you think you have it all figured out life throws you a curveball. We showed up at Stanford's ITA (Infusion Treatment Area) on Tuesday to receive Billy's first Out-patient dose of re-induction chemo only to be informed by his hematology-oncologist that his bloodwork had not reached the parameters necessary to qualify for OP treatment. They wanted to admit him right then to begin In-patient treatment, but we were in such shock they allowed us to return home for a last evening before enduring another 4-6 weeks back in the hospital. We received a call that a room was ready around 5pm yesterday so packed up and headed back over the hill. Finally settled in around midnight and were greeted this morning by many of the same nurses he had before. His favorite, Maureen O'Hare, who has been an oncology nurse at Stanford for 34 years came in and you'd thought two best friends were re-uniting! Although not happy that Billy's condition had relapsed and required re-induction, all were genuinely caring and very supportive that this is not atypical and is the best thing for him. And Bill and I completely agree. He had been getting more and more tired at home and has persistent headaches. After less than 24 hours of IV hydration he already looks much better and had a neuro-oncology consult re: the headaches. Thankfully nothing to worry about - more than likely the result of the 3 lumbar puntures he has had and should dissipate. Tonight he is receiving his first round of IP chemo; this time around it is a conventional chemo regimen (not a clinical research trial), plus an added pill that specifically targets a "receptor" called Flip-3 that is on Billy's cancer cells. Kind of like a heat-seeking missile. He has 4 days of IV chemo along with 7 days of this pill. Then we wait one week and on day 13 he has a bone marrow biopsy to see if he is clear of white blood cells. Then the usual waiting game to see if his body generates new healthy cells. Remission is the goal; then he can get a bone marrow transplant. He is still in the early stages of this marathon and it is a couple steps forward then a few back, but never halting. At the finish line there is a new journey awaiting us......Billy proposed during his time at home and so now there's a wedding to plan! But first things first - getting him healthy is the focus for now. Bills new room number is F072. Same address for cards, just different room. Similar to last time around, no flowers allowed and only healthy visitors please :) Lisa

Choices

This week involved muliple trips to Stanford for one test or another. Two CT scans and one MRI have shown no need to worry extensively over Bill's headaches. Just to be safe, though, his oncologist has referred him to a neurology oncologist next week. Bill did not like the lethargy Vicodin caused so alleviates them as much as he can with Tylenol and laying down. He also had a bone marrow biopsy, lumbar puncture and bloodwork in preparation of his upcoming new regimen of cheotherapy, which begins next Tuesday if everything looks ok white cell count wise. Billy has chosen the Out-Patient option so he can be at home during the treatment course. Some days it consists of just a pill, others an injection and then twice over the 8 day cycle period an infusion at the hospital. If all goes as planned he will finish the first cycle on June 6th. Then he Weill have his bone marrow tested on day 14 and 28. If everything looks like it is working he will repeat the process. It will once again test our patience but we are very optimistic this will do the trick to reach remission bill went into work for a few hours on Thursday - first time in 2 months and it really boosted his morale. He hopes to go to San Jose fit tomorrow to see his runners and get a little walking in. Keep all the good wishes coming!

Roadblocks

Hello everyone, We received good news and not so good news at yesterday's medical appointments. The good news is Billy's labs all look good and his fatigue is a normal part of recovering from chemo. He gained a pound a day between Monday and Friday so his weight is steadily climbing. "Coach Bill" is at San Jose Fit this morning inspiring both new and veteran runners to get off the couch and move into a healthier lifestyle! The not so great news is that the chemotherapy he had while in the hospital was not successful at getting him into a remission status (defined as < 5% cancer cells). So he will have to endure more chemo of a different drug combination with the hope this time it will work. He has a choice of a more conventional type as an Inpatient at Stanford (30-45 days) or a brand new clinical research trial drug combination as an Out-Patient. This new trial was just approved for use at Stanford this week so his doctor is pretty excited about it. We would have to travel to Palo Alto every day during the 9 day cycles and Bill would have to be super cautious about preventing infections (wear a respirator outside the house) but being able to do this at home is very tempting. We are weighing the pros and cons of each over the weekend. Lots of medical appts next week in preparation for the re-induction. Either way, once Bill gets into remission the plan is for a bone marrow transplant to keep him cancer free. This will be a long journey and your love and support are much needed and appreciated. Lisa

Home At Last

Billy has been home for a week and it has been uneventful, which in our world is good news. He was discharged rather abruptly last Monday after the most recent bone marrow biopsy came back "inconclusive". We saw the local hematologist/oncologist yesterday who originally referred Bill to Stanford. Bloodwork showed his platelet count to be good and everything stable. He has gained about 10 pounds since he came home, enjoying all the spicy foods he loves and could not get while hospitalized. He sees his Stanford doc on Friday where we hope to learn what the next steps are, which could be consolidation chemo as an out-patient or bone marrow transplant. It is hard to be patient but one thing we have learned about cancer treatment is patience. Through all of this Bill has continued to work and set his goals high. There were definitely a few tears shed by the nursing staff when he left Stanford. They said he had such positive energy during his 45 days there he inspired them! Bill is hoping to join his coaching staff at San Jose Fit on an upcoming Saturday morning, so all you running buddies don't be surprised to see his trademark flashy fluorescent jacket and matching running shoes soon! Lisa

Staying Positive

OK so now we are into month #2 of this journey..... trying to stay focused on a 100% positive recovery even though the latest bone marrow results were not what we had hoped for. Billy's body continues to produce those damn purple cancer cells despite aggressive chemotherapy, so round 2 is underway. Same schedule as before, 5 days of twice per day chemo along with antibiotics and other medicines to prevent side effects. He feels good, tho, and as long as his hemoglobin stays above 25 he gets to ride the brand new stationary bike they brought to his room yesterday. You would have thought it was Christmas he was so excited! Walking the halls dragging an IV pole and wearing a respirator is not Bill's idea of exercise. Those of you who know him know biking lags just a bit behind running as a passion. He also has been sleeping better, thank goodness, and this morning grand rounds were not until 8:30 so we both slept in. A team of no less than 7 doctors arrived, reviewed his case, laughed at all Billy's jokes and assured us what he is going through is not uncommon with this kind of cancer. We continue to feel very confident in the treatment and staff. Spent a leisurely morning watching the Giants-Mets game (Huff at 2nd base - are you serious??!!) and relaxing afternoon. Saturday is traditionally our "date night" so I'm going to run over to P.F.Changs in the Stanford Shopping Center, bring back some dinner then we'll settle in to watch a movie. About as good as it gets considering the circumstances! Billy had some great visits and phone calls this week - you all play a bigger part than you know in helping keep his spirits up; thanks so much Lisa

Dealing With Detours

Hi everyone. Thanks for checking in with all the positive thoughts. We feel blessed to have so many great friends and family cheering Billy on to the finish line. Had a little detour this week. Following the most recent round of chemo our hope was that the bone marrow biopsy would show no cancer cells. Unfortunately this was not the case and so they will do a repreat biopsy next week. If purple cells remain more chemo may be needed and the process he has just gone through repeated. If the cells have been sucessfully eradicated then we wait about two weeks for his body to replenish itself with healthy cells before the doctors will consider discharge. In the meantime it is a day to day regimen of antibiotics, platelets, short walks and rest. Needless to say all the doctors and nurses love Billy, his sense of humor and positive outlook. He has been visited personally by the head chef (who used to work in the White House) and plans to get on a first name basis with the hospital CEO. He continues to work by holding conference calls from bed and last week registered for Wharf to Wharf; I have no doubt he will find a way to race! Truly an inspiration to us all. Lisa

PacingThrough The Race - In-Patient Treatment Mile Marker 6.5

It has been a little over a week now and things are beginning to settle into somewhat of a routine.  Bill no longer feels like such a pin cushion; a PIC line was placed so blood work can be done and IVs given without sticking him. He handled his bone marrow biopsy like a trooper which is good because these will occur fairly frequently during his treatment.  For the time being masks are not required which makes visiting much more pleasant.  He had a visit this morning from the lead research physician overseeing his clinical trial who said from all indications his body is handling the chemotherapy regimen as expected.  Today is day three.  He first gets an injection of Neupogen, a drug which helps counteract the immunosuppressive effect of chemotherapy.  Then an hour of chemo, break for four hours and then another two hours of chemo.  This will occur five days on, two days off.  So far he has felt a little fatigued but no nausea or other unanticipated side effects.  Yesterday he even strolled his IV down to the atrium in the cancer center where a concert was taking place.  I have a feeling soon he will be playing his ukelele right along side the other musicians! He has family/friends staying with him around the clock and the team at Stanford are very accommodating.  His daughter Brenna had to head back to the University of Arizona but son Brady is able to stay awhile longer.  He and Bill are hanging out watching basketball this afternoon. 

When we arrived last Saturday we were told to plan for at least a one month stay.  Well one down and only three to go!  This is a day to day journey and, like running a marathon, must be paced slowly but without ever losing site of the finish line.  As long as things continue to be OK at the end of each day we feel more and more positive about the long-term outcome.  All of your love, support, prayers and good thoughts are definitely making a difference so keep 'em coming!   Lisa

Sending Items to Billy

You can send cards to Stanford Hospitals & Clinics F Ground Unit MC 5615 WILLIAM GRIFFITHS 300 Pasteur Drive Stanford CA 94305 Hopefully Bill himself will be authoring these posts himself soon. Love to everyone - Lisa

The Starting Line

The marathon has begun. It will be Billy's biggest challenge yet but with everyone's love, support and prayers he will cross the finish line a winner.  Even tho this is not quite a race he signed up for, he has the same amount of determination many of you have seen out on the trail. So how did we get here?  Billy had not felt well for the last couple of weeks. Tired, feverish with a sore throat and no appetite. Went to the ER on 3/12 where he was given a 7 day dose of antibiotics. He thought he felt a little better and enjoyed a brief visit home with Brenna. Since he was not getting a lot better he revisited the ER on Sunday the 22nd. Was told he had a sinus infection and pharyngitis and given a stronger antibiotic. This did not produce the desired results and he actually seemed even more tired with continued symptoms. We started thinking perhaps he had mono. When I came home from work on Wednesday I noticed his eyes looked jaundiced and he seemed more short of breath. He had developed a rash and was still very tired. I took him back to the ER and insisted they run a full spectrum of tests. The doctor came in delivered the news of blood cancer. After the initial shock wore off we focused on "the plan" ahead. First a blood smear to determine what type of leukemia and plans to transfer th Stanford asap.  Smear came back acute myeloid leukemia. We arrived at Stanford last night and truly feel we are in excellent hands. Very impressed with all the doctors and nurses so far.  Lots of blood work, tests, transfusion etc has not left much time for rest but this should all settle down a bit once they do a bone marrow biopsy tomorrow and know exactly what type of AML he has. What we do know is he will be here for at least a month during the "induction" phase of chemotherapy. Brady & Brenna are headed home and everyone else, both family & family, have been wonderful. We will use this blog to update everyone frequently. Billy sleeps slot so don't be discouraged if your phone calls go unanswered. He is not allowed to have flowers or visitors who have any sign of illness like a cold or cough. This blog site is a great way to get your get well wishes communicated. Bills in room F030 of the Petersen