Monday, November 30, 2009

It's Good to be Back

We (Dale & Hillary) arrived at the hospital this afternoon and were thrilled to see Kevin again. He's had a few tough days this last week which have made him very tired. We missed the doctors today so hopefully we will get more information tomorrow.

(Channeling his inner Zac Efron)

Our good friends Rod & Diana were in the area and stopped by for a visit. Even though it was Diana's Birthday they chose to come to the hospital and spend some time with us. Kevin slept most of the time but Dale & I were able to have a nice visit. He was kind enough to open his eyes for the picture though.

Sunday, November 29, 2009

Heading Back to San Fransisco

Dale & Hillary enjoyed a lovely Sunday surrounded by friends and family at the Paso Robles 1st ward. It was so nice to have a Linger Longer today so we could say HI to people we haven't talked to in months.

We are anxious to get back to Kevin so we will be leaving for San Fransisco tomorrow. We don't know how long we will be gone or if Kevin will be coming home or becoming a more permanent resident like our friend Dennis.  We will let you know once we get settled back in and talk to the doctors. Candice was able to spend a couple of days with Kevin and meet the doctors but we have little information at this time. Dr. Wolf did say that his IGM level is at 150 which is a "normal" persons level. Not the 9,000, or 5,500 like before. This means they have a good handle on the cancer. Things are continuing to look up but we still have a lot of work ahead of us.

Thank you all so much for your love and continued prayers. Kevin misses everyone so much, especially the children, and can't wait for a happy reunion!

Thursday, November 26, 2009

Happy Thanksgiving

It was hard for us to be away from Kevin for Thanksgiving and just wasn't the same. Uncle Rick has been here on the hill taking care of Grammy and things around the house while we were gone. He stepped up to the plate this year and made our Thanksgiving dinner happen.

 (The turkey was beautiful and tasted even better than it looks!)

(Gravy is usually Kevin's Thanksgiving contribution so there was a question if we'd actually be able to make it without him, luckily Dale rescued us)

(Grammy admiring our lovely feast)

Unfortunately Kevin's hospital Thanksgiving dinner was not as delicious as ours but Kevin's physical therapist's daughter who is a talented musician brought her 8 string acoustic guitar and played along with a CD of her music group. He really enjoyed the concert but the best part was that the concert was down on the 11th floor were his "partner in crime" Dennis is. Kevin & Dennis were finally able to visit and I am so bummed that I wasn't there to get pictures. What a wonderful Thanksgiving surprise!

Speaking of Dennis I was thrilled to read this post on Dennis' blog this morning...
GOOD NEWS TODAY!  Yes, the biopsy results were finally in today and showed that Dennis' liver was healthy.  This was a big hurdle to overcome, as no further treatment could be done if his liver was not healthy enough.  Dennis was also "released" from ICU today and back to his old floor.  We know its not going to be an easy road ahead and the doctors have told Dennis he needs to get stronger - ie, eat, walk, exercise the lungs, etc - We are optimistic that at least there is hope for further treatment ahead.  Thanks to all for your prayers, good vibes, thoughts, etc.  We are truly thankful this Thanksgiving for all our friends and family - we love you and wish you and all your loved ones a very Happy Thanksgiving.

We have so much to be Thankful for this year! Our biggest blessings are YOU our amazing family and friends who have continued to support and sustain us throughout our daily hurdles through your love and prayers. You have blessed our lives in every way and we will be eternally grateful to you all for that. We love you and wish you and your families joy and peace this holiday season.

Wednesday, November 25, 2009

We have the greatest friends!

Even though we are keeping ourselves VERY busy while back at home it is extremely hard to be so far away from Kevin for such a long time. Kevin now has pneumonia which is coming when you are in the hospital a long time and your have a low immune system. He feels OK but it's in his lungs. so they are taking every precaution. Because of this new development he had to go for more X-Rays today, oh goody his favorite thing. Yesterday our good friends, the Ashby's, from Family Camp  went to visit Kevin and this is what she said about it...

It was great to be able to spend some time with your Dad yesterday.  He enjoyed some real food for the first time in who knows how long!  I brought him a Ciabatta Sandwich, Salad, Chocolate Chip Cookie and Smoothie from Bellini's and he happy exclaimed, " I love food!"  He was able to eat some of it and keep it down all day. 

(Kevin is SO glad to be off of the renal diet[for his kidneys] , which means NO SALT! Can you tell?)

I was there while the physical therapist took him for a walk which seemed like torture for him and I know he pushed himself extra because I was there.  He was able to get on the scale and weighed 190!  This new weight loss program is ridiculous!!  He had several long and painful back spasms while I was there.  

(The physical therapist Heidi taking Kevin for a walk)

It was so hard to watch him suffer.  We enjoyed great conversation and talking about how much his friends love him and how he has felt their love and prayers bolster him up in his time of need.  He cried as we talked about them.  He talked about how much he missed Dale and you, and he was grateful for all the time that you were both able to spend with him but knew it was important for you to be home to take care of everything. 
Ben and I came back later in the evening with my step dad, Wayne Boyce.  After a nice visit Ben and Wayne administered to Kevin and gave him his 11th priesthood blessing.  Here are a few things that I can remember that Ben said in the blessing:
- Heavenly Father is delighted with him every time he asks for a priesthood blessing and that Kevin should delight in receiving them and that it is a demonstration of his faith.
- Kevin's righteous desires would be granted in the Lord's time and that He is here helping and comforting every moment as he suffers even as Job suffered.  That Kevin is learning patience and compassion and love.
- That his back spasms would calm and that he would be able to relax.  That through being able to eat food that the nutrients would help heal his body.  That one day he will be whole.  Ben blessed the doctor's that they would be guided by the spirit to know how to treat this rare cancer and learn from Kevin and know how to help others. 
- The veil would be thinned at this time and in the many quiet moments when Kevin is alone he would have many spiritual experiences and great times of learning as the Lord would reveal and answer the questions of his heart and teach him through the spirit. 
 - He was blessed that his bones would heal and that would receive great strength.  That would need to dig deep within himself to get through this trial.  Kevin was reminded that this was a trial of his faith and those around him would help him get through it.  And even though his family wasn't there that his family had him close in their hearts and in his mind and heart and to draw upon that for strength.
- The blessing was closed reminding him of how much his Father in Heaven loved him and would help him and is helping him. 

(Wayne, Ben & Kevin after Blessing #11)
After the blessing Ben asked Kevin how it felt to receive so many priesthood blessings in such a short amount of time. Kevin told a great story from his youth of when David O. Mackay came to his ward and shared with the priesthood brethren to give priesthood blessings to their family members often.  That it was part of the divine right of having the priesthood and administering even as the Savior would.  It was a great teaching moment between Ben and Kevin.  I think that Ben and Kevin are kindred spirits and they understand each other.  :) 

(The beautiful and talented baker Leslie, love those brownies!)
We visited for about a half hour more.  We could tell Kevin was tired and the nurse came to give him more pain meds for his spasms which were getting shorter.  We know that the Lord is blessing Kevin.  Although Kevin's body may seem weak right now, his spirit is stronger than ever.  The Lord is guiding the Doctors and Kevin is being comforted. 
We love your family so much!
Love, Leslie

Monday, November 23, 2009

Good to be home

It was so hard to leave Kevin in San Fransisco but we are really glad to be home. Lots to do!

It was wonderful to see everyone at church yesterday. We spoke with Kevin after church to pass on all of the love and well wishes. Elder John Dalton of the Seventy visited our ward yesterday and we were invited to meet with him before church. We had a wonderful, uplifting visit and were able to share so many of our blessings and miracles with him. He was also able to call and speak with Kevin as well. As it turns out they are kindred spirits. They grew up in the same area (Orange County), Elder Dalton knew Kevin's father Lynn Richards, they both served missions in Germany and more specifically Bavaria. It was a truly inspired visit and completely made our day.

Kevin was able to get up and walk almost to the door of his room yesterday before he started having back spasms. His recovery from the kyphplasty will take a little longer than normal because of all Kevin's pre-existing problems but will end up being a wonderful thing.  Today Kevin was taken for yet another CAT scan (you'd think they'd have enough scans by now) to look at his lungs.  He had a fever the other day and with cancer patience a CAT scan is mandatory procedure.  He was not to happy about it and was in pain afterwords.

Kevin misses everyone SO much and is looking forward to coming home, whenever that may be, but until then knows he is in the right place at the right time and receiving excellent care.

Thank you for all your continued prayers and help in so many other ways.  Dennis had his liver biopsy today and they are hoping to have the results tomorrow.  I will let you know as soon as I hear anything.

Friday, November 20, 2009

Kyphoplasty was a success!

Got a call this morning at 7:30am that Kevin was 1st on the O.R.'s list for surgery's. WHAT? Last night it was we are hoping to squeeze him in but it might not happen tomorrow and this morning he's 1st on the list. How amazing, wonders never cease!

The kyphplasty procedure went great but the recovery was longer than expected. He got back to his room around 2pm and spent the rest of the day resting and watching old episodes of Psych.

and giving Yvonne (from Ireland) a hard time!
We will see if he is feeling up to getting out of bed tomorrow.

I was able to get down to visit Dennis & Marie today. Dennis is doing better but still needs lots of prayers. Monday he is having a liver biopsy to determine if a transplant is still a possibility. We need him to be healthy enough for the transplant, it could significantly lengthen his life just like Kevin's would do for him.

Thursday, November 19, 2009


Kevin will NOT be coming home Saturday.  

Because his fractured vertebra cause him so much pain Dr. Martin does not feel comfortable releasing him to go home. (Dale & Hillary love Dr. Martin) He recommended that Kevin see an Orthopedic surgeon to see if surgery would relieve some of his pain. The surgery is kyphoplasty and they are hoping to do it tomorrow. He will receive anesthesia then they inflate a little balloon to put his vertebra back where it is supposed to be then they fill it with a cement like substance. This should relieve a LOT of pressure and is a minor surgery. The surgeons who will do the procedure are shocked at how much pain Kevin has been living with. (He isn't a complainer and has a high threshold for pain so this should have been done sooner but luckily it will happen before he gets released) Kevin is on the O.R. emergency list for surgery tomorrow but there is a chance it wont happen until Monday. If he has surgery tomorrow he will not have chemo. If he doesn't have surgery he will receive his chemo as scheduled. Dr. Martin thinks it's more important that he gets the surgery first and delay the chemo a day if necessary.

Dale & Hillary will be going home Saturday to take care of a few things and are looking forward to church on Sunday. We miss everyone!

After returning from getting a port put into Kevin's chest he was to wiped out to get off the gurney and into bed. He needed a little help from the blue slider...
and Lindsey, Gabriel, and even Dr. Martin stepped in to help. Such service!

The Latest and The Lost Blog Post

Kevin was thrilled that today was his last day of radiation. It has made him sore and stiff but in the long run should help the hip pain a lot. He is scheduled to receive his last chemo treatment in this round today. If all goes well he is hoping to go home (with Dale & Hillary) Saturday. Dale & Hillary have there reservations and are turning that, like everything else, over to the Lord.

Right now Kevin is having a minor surgery to put a "port" into his chest. They want to take out his PICC line and replace it with a port. The port will be used to draw blood, receive chemo and get IV fluids through. This should be more comfortable for Kevin and sounds like it will be easier for his treatments in the long run.

Kevin had a nice visit with Dan & Joan Murphy today. They are Dennis Lozano's brother and sister in-law's and part of our new extended family, just like Dennis and Marie! We are so thankful for the Lozano's in our life and grateful that they are well taken care of by the Murphy's. Update on Dennis: I talked to Marie this afternoon and things are beginning to look up, finally. He is regaining his mental cognition but his numbers have not improved. Thank you for all the extra prayers that are being sent their way. Kevin is so grateful and constantly worried about his good friend Dennis. He is hoping to be allowed to visit before we leave.

We are not sure if we ever blogged about the Paso Robles First Ward Primary Program. Shame on us! For the children...
When Kevin first learned that he had cancer he was extremely concerned that he might miss the primary program. He loves the children so much. His favorite part of Sundays was when he could sneak into primary or the nursery and see the kids.  The possibility of missing the program weighed heavy on his mind for many weeks. He continued to decline so rapidly that he asked the Stake Presidency for a priesthood blessing to specifically bless him to be able to attend.

When I (Hillary) left for church at 8:25am (church starts at 9am) Kevin had just woke up. He wanted breakfast and then to get ready but this takes a lot longer than it used to these days. I was doubtful that he'd make it under such a time crunch but were there's a will there's a way. As the opening song was being sung by the congregation they arrived. He was set up in the 3rd overflow section, way in the back, to stay as far away from germs as possible. From the stand I (and the children) could see he was their!
FOR THE CHILDREN: He wants you to know how proud he is of all of you! "Your talks were wonderful, and you sounded likes angels when you sang. I love you all so much and miss you everyday. Thank you for your cards and pictures they always lift my spirits!" (Bishop Richards) My mom later told me he was so glad to be there he started crying in the parking lot and didn't stop till they got home. It meant so much for him to be there in your presence and feel of your tender, sweet and strong spirits. He will never forget this primary program EVER! 

Wednesday, November 18, 2009

It's been to long, lots to catch up on picture wise

The large cream building in the back is the hospital and the black glass building in front is where Dr. Wolf & Dr. Martin's Cancer Clinic is.
We have been blessed with the worlds best nurses!

The other day Svitlana stopped by and we had a nice visit.

Then JoAnn surprised us with a visit too :)

We were happy to see the familiar faces of Alyson who is a sweetheart and laughs easily, which is like candy to a baby for Kevin

and Lindsey who was apart of the Dennis and Kevin fast friendship. Lindsey loves to tease Kevin and always brightens up our day!
They take such excellent care of Kevin and we are so grateful for all they do for us. They are on the front lines of health care and know how to get things done.

Kevin wants to be cool like Colby so he's growing out his hair 
(while he still has some)
Who's really in-charge?
(Dr. Martin & Dr. Blakely)

Tuesday, November 17, 2009

Who could ask for anything more?

     This weeks' attending oncologist Dr. Martin, whom we met yesterday told us it is definitely only IGM Multiple Myeloma!  He told us in the 15 years he's been doing this Kevin is the only second case he's seen...  Dr. Martin just came in with the latest plan.  Yesterday was day 8 of the first round.  After Friday's day 11 he will be off days 12 - 28 and then start over again with day 1, 4, 8, and 11.  He may even be released to go home Saturday depending on how he handles Friday's chemo.  They were going to keep him until we got approved for Medi-Cal so the treatments would stay on schedule.  He will have at least 2 more rounds before they start the really heavy duty chemo.  Then they will to start him on a new much more aggressive chemo plan to attack the very aggressive cancer.  It's called PACE.  You can google it.  It's an inpatient treatment.  Four days IV then two to three weeks recovery in the hospital because he will be neutrapinic, meaning he will have no immune system and be at great risk for infection.  This will be in preparation for his stem cell transplant.  Then remission!
     Okay!  Now for the miracles!  Sunday evening after Hillary & I got back to our hotel we were told that because they were overbooked they couldn't extend our stay as we had requested a few days before.  We went to bed wondering what to do, but decided not to worry about it until morning.  At the front desk next in the AM they searched for a room for us at another Marriott.  They offered us a room at the Residence Inn near the SF airport for only $5 more that includes breakfast, a kitchen and sofa!  It's fabulous!  No bridge, easy drive.  Down side no Trader Joe next door.  Oh well we will deal with that!  Small miracle!
     Last evening I received a call from our fabulous attorney, Martha, informing us that not only were we going to qualify for Medi-Cal by the end of the month, but it would be retroactive back to the first of September!  That is huge!  Miracle of Miracles!  HUGE! We still have some work to do on our end but we are on it!
     We feel so blessed.  We are so blessed.  So many people have been helping to make everything happen.  We are so grateful.  Now we need you to pray some miracles for our friend Dennis Lozano, Kevin's room mate on his first stay at UCSF.  He is not doing well and going down hill.  If it is Heavenly Father's will Dennis beat this, now is the time for the needed miracle.  They don't know why he is getting worse and not better.  Please pray for his team of doctors.  Pray for Dennis that he will not give up and be accepting of God's will.  Pray for his beautiful wife Marie and their children and grandchildren that they may have the peace and comfort of the spirit.  Thank you all so much!  Love, Dale

Monday, November 16, 2009

Catching up with Dr. Wolf

Yesterday Dr. Wolf surprised us with a short visit. We were so glad because it had been a week since Dale & Hillary had an opportunity to speak directly to a doctor.

Dr. Wolf's change in diagnosis was right and wrong. Kevin apparently has Waldenstrom Macroglobulinemia AND Multiple Myeloma! Our special boy. The symptoms and treatments are similar which is why is it hard to diagnose. Waldenstrom's is more about the cancer in the blood and the Myeloma part is the tumors, fractures, and lesions.   

Good News: The chemo drugs are still working! His numbers are not coming back up which is a good sign and something that they are continually watching. He will get the chemo drug Velcade Monday and the Cytoxan and Velcade Friday. The Doc doesn't want to send us home until he knows we will get continuous treatment because of the aggressive nature of Kevin's cancer. Which means until we get approved for Medi-Cal but we are looking at another week for sure. We are so close but there are a few legal things that are being worked out.  Our Attorney has been hard at work getting answers to the questions no one from social services has been able to answer for us. She has been taking care of business and really helping to push things forward.

The plan: Is still to get Kevin healthy enough to have a transplant of his own stem cells down the road. It sounded like if all things go well somewhere around 6 months out. Of course, considering the last 2 months we know better than to plan on best case scenario but for a positive ending whenever it may come.

Today's nurses accents consist of North Carolina, Ireland and exotic San Diego :-D

Sunday, November 15, 2009

Friday the 13th

It's 2am, all's quiet and peacefull in the halls but a nightly nuisance comes to visit. Not a nurse, not the doctor but last night's dinner, ewwww.

The morning was bright and held much promise for a good day until I was awakened by breakfast. I quickly downed my cheerios and juice in anticipation of an easy day preparing for chemotherapy that night. Little did I know that behind the scenes the hospital had determined today was going to be a dooozy.

Before my breakfast was gone they sent Shin the Barbarian he had a physical therapy badge on but I could tell he wanted more. I've been here a week and a half with no physical therapy but today, today of all days a PT shows up. After a grueling half hour of PT that would have wore out a healthy 70 year old. Arms, legs, weights, up, down, no water breaks, no bathroom breaks, relentless. Then Shin says "now we're going for a run." So we grabbed the walker, belted me up, and out the door and around the corner we inched. Only to be stopped in our tracks by a gurney with my name on it. PT over, Shin disappointed the torture was over warned "I'll be back!"

Unbeknownst to be me I was summoned to X ray. Sounds simple enough but do to the compression fractures in my spine, cracked ribs, pain in the hip from lesions, and exhaustion from PT I knew it would be painful, long and tiring. And it was! I must say however the X ray technicians did their best not to cause additional pain or damage. When I returned I found Dale and Hillary waiting (as usual) for me to get back.

Lunch: Tilapia, I like fish, I love fish but without even opening it I knew there was trouble lurking underneath that lid. I peaked, I puked :-(

The day before I had done 2 hours of prep work to set up the radiation for a lesion on my right hip so that today's treatment would be an easy 15 minutes. HAH I arrived at radiation to hear that a new doctor had accidentally messed up all of the laser and CT guided settings. Meaning the 2 hour prep work I had excruciatingly suffered through the day before would have to be re-done. They assured me that after the prep work they would do my treatment so I would not have to come back again today. They were true to their promise and gave me the treatment, finally. They asked if I was cold and I replied "those aren't shivers but spasms." Which were on my left side fortunately, so they could continue working on my right hip. After a short prayer and a few deep breaths they were able to finish the radiation treatment.

I was thrilled to get back to my room around 5pm but was to nauseous from pain for my dinner at 6pm.  Melting into bed anticipating that all that was left was chemo later that night. I had forgotten about my pre-chemo regimen which started about 7pm with drips, bags, pills and always checking those vitals. Who would have thought that chemo would be the easiest part of my day? At 9 I got my chemo drugs and settled in for a nice, peaceful, long rest. Ironically no visitor at 2am, yah, it waited until 3:30am, darn-it.

Friday the 13th, I'm not superstitious...
(Dictated by Kevin to Hillary)

Friday, November 13, 2009


   I understand that this ordeal is an opportunity for growth and learning.  From the beginning I've known I would grow in faith and hope and patience.  The first two are easy the last, not so much.  I'm learning how to accept service and generosity from others.  What I didn't expect is that I'm being taught how to give and serve by you!
     Last night in the beautiful blessing that Ben gave to Kevin, one of the things he told him was that angels were all around us.  Angels here on earth and angels from heaven.  The angels here on earth are all of you!  You, our friends, family and even strangers who have heard story and come to our aid are those angels.  Our own earthly guardian angels!  Every prayer you offer is heard and answered and brings us daily blessings. People ask us how we can be so strong and upbeat most of the time.  It's not us, it's you and your prayers and service and help.  Those prayers sustain and strengthen us.
     As I've been thinking and pondering I've looked back and remembered when I had the opportunity to pray for and serve some of you.  I've wondered, did I pray enough, did I do enough?  Probably not.  Many times when learning of someone's trials I've spent more time thinking about what to do than doing anything.  Sometimes I've wanted to do something and fear of saying or doing the wrong thing has kept me from doing anything at all.
     As I have received continual prayers and service from you, you are teaching me how to serve.  Everything you do for us is huge to us.  Every prayer is powerful and meaningful.  Every card so thoughtful.  Every e-mail, every act of service and so many offers to do anything!.  It's all so meaningful.  I am learning how to be a better servant of the Lord through all of you.  Even in the act of receiving so much I am being taught in a very personal way what the pure love of Christ really is.  You didn't know you were teaching me as you were giving to me.  You all have been such good examples to me. 
     I know as you continue to pray for and serve us your love for us increases, just as our love for you deepens as we receive that service.  We feel a strong bond with all of you.  We are not alone.  We are in this together.  We will all learn and grow from this.  I feel and hope that this bond between us eternal.  Why shouldn't it be? It has to be!
     Even with eternity I could never really thank all of you enough.  But I must keep trying!  We love you and we pray for you each and every day as well.  Dale

Thursday, November 12, 2009

Kevin gets Tattoos

This morning at 8:30am Kevin was taken down to radiology to fill out paperwork and answer questions. There was a discrepancy with what Kevin thought the plan was and what they said so they contacted the Doc and sent him back to his room.

Around 2pm they had everything sorted out and came to take him back. They put him into a CT machine to pin point the spot the radiation is needed. It's a long, grueling process. Then they gave him 4 small dot tattoos in the exact locations for the radiation. (He has not yet received radiation.) Tomorrow should be his first day and the duration is unknown at this time.

While he was getting tatted up Dale and Hillary visited the Oakland Temple. As you can see it was a sunny gorgeous day here.
It's been a while and with the new side effect of the chemo it was time for another priesthood blessing. #10 since this all started and what a beautiful blessing it was. Reminding us of the Saviors love and the healing power of the Atonement. Reassuring all of us that Kevin will be made whole and that his body will be able to sustain the many drugs he is receiving.

Long time Family Camp friend Ben (in the back) and Steve made a special late night trip to the city for Kevin.

I caught Ben & Kevin in a tender moment

Dale & Hillary were able to visit Kevin's old roommate and pal Dennis down on the 11th floor.  Dennis has taken up residence in the hospital.  He has been there for around 61 days with little sign of going home. He has a different but very rare cancer & is currently without an immune system. I know we have asked for so many specific prayers from you and each time you have come through for us but Kevin would really consider it a personal favor if you would say a little prayer that Dennis Lazano's blood counts will come up. We love him and his family so much, thank you.

Wednesday, November 11, 2009

Ohhhh Helloooo (Think Mrs. Doubtfire)

Kevin is waving Hello to you all! He has a lot of time of his hands to ponder and appreciate all the prayers offered on his behalf. The new chemo drug Cytoxan has made Kevin feel very sick and tired all the time which is taxing but the good news is that the preliminary reports show that it is working!!!

Tomorrow morning Kevin gets to go in for a little radiation therapy for the hot spot on his hip. He gets another dose of Velcade and Cytoxan on Friday and they are talking about sending him home early next week with plans to come back to Dr. Wolf's clinic here regularly. (We haven't talked to Dr. Wolf about this so I don't know how regularly, maybe twice a week.)

It's hard to tell in this picture but some of the streets here are SO steep! Dale & I (Hillary) walked up this one that is so steep here at the top the sidewalk turns into stairs.

It was worth the shin splitting walk to see the classic San Fransisco style homes along it.
(and YES it's 3 flights of stairs to their front door)

Tuesday, November 10, 2009

Progress Report

I've been waiting to update the blog until we talk to a doctor but we haven't seen the oncologist today.  Dr. Lowell Lo (yes you read that right Lowell Lo) who was one of Kevin's kidney doctors in our last visit was back today. Kidney's are doing well and for now he does not need any dialysis. Because of the trauma and time laps  he has permanently lost a little kidney function but all in all they are doing well.

Today Kevin had his last plasmapheresis treatment (for a while) and enjoyed a gelato with the process. Such service. We also ran into our old friend Dr. Burgess who Kevin had a nice visit with.

He's received more cryos and fresh frozen plasma so it's been a traumatic day for Kevin.  He's tired and has been nauseated most of the day.

Kevin's favorite hobbie these days is teasing the staff about their accents. He's had Svitlana from Uzbekistan, Nicole from Boston, JoAnn from Mississippi, Lawrence from the Philippines, Dr. Lo from Hong Kong. It keeps him busy!

On a lighter note: My mom and I (Hillary) have enjoyed taking walks and getting to know the area. We love looking at the different architecture of the old buildings and having little adventures.

The enclosed carousel in Golden Gate Park

It's a beautiful carousel!
Today we found a local beautification garden project that was adorable and charming to stroll through.
We have also been exploring the town of Emeryville, (where we are staying) the birthplace of Pixar

Kevin enjoying Monday night football, some things never change!

Monday, November 9, 2009

MRI Pains

Yesterday was supposed to be a quiet day but they decided to send Kevin for another MRI to check the mass on his ribs and what fractures he has sustained. The MRI table is flat which is extremely frustrating  and painful when you have fractured vertebra. No pheresis yesterday so that was a little break.

Dale and I (Hillary) left the hospital earlier than normal last night to have a homemade meal and fun night of talking, something we are all very good at. Then all the really fun began. They decided to give Kevin a transfusion of blood just before midnight. Then another transfusion, 1 bag, of "fresh frozen plasma" before 1am.  Then another transfusion of cryo-participate before 2am. Talk about fun! Apparently a lot of other things happened too but Kevin can't remember it all. Needless to say he's a little tired but still found the strength to give himself a manicure because feeling pretty helps!

Today the MRI results showed multiple compression fractures in his vertebra and lesions on the bones, ouchy. This has Dr. Wolf rethinking this whole case. We all know Kevin's a one of a kind guy so of course his cancer would be as well. Tomorrow we should have a good visit with the Doc and see what he's come up with.

Today we are praying that Doctor Wolf will be able to figure out the best diagnosis/treatment plan for Kevin, that the drugs will work quickly, and that we will get everything done in order to qualify for Medi-Cal  this month.

Saturday, November 7, 2009

Change in Diagnosis

Interestingly enough Dr. Wolf has decided that Kevin doesn't have Multiple Myeloma but a similar cancer with overlapping symptoms called Waldenström Macroglobulinemia. Both having to do with the overproduction of the IgM protein. He is going to start him on treatments of Velcade and Cytoxan.

Kevin's nephrologist  (kidney doc) didn't think he needed dialysis today but is going to keep an eye on things in case it is necessary come Monday. However he did have a second session with the plasmapheresis machine today. He is transported down to the 11th floor (from the 14th) to the pheresis/dialysis room is, which looks like this.

Because of the limited space we are only allowed in 1 at a time for 2 minutes every hour! Today Kevin lucked out and got the slightly bigger single room.

All finished and ready to head back up to his room. (Notice the large bad filled with yellowish fluid at the back of the machine, that is Kevin's bad plasma)

Friday, November 6, 2009

Settling in

Kevin arrived to UCSF Medical Center in San Fransisco late last night via ambulance and has been poked and prodded ever since. He has spent almost all of today back down in 11 Long where the plasmapheresis and dialysis machines are. Dale & Hillary arrived just after 5pm and met him on the 11th floor.

While Kevin was finishing his pheresis, Dale and Hillary were able to stop in and see our old friend Dennis and finally meet his sweet wife Marie.

 Dennis putting on a brave face to take a picture for Kevin. Dennis' skinnier and has less hair since the last time he was on the blog but is trying to stay positive through his own hard trials. We also ran into an old nurse of Kevin & Dennis' who remembered how much fun these 2 guys had together.
We feel really good that Kevin is back in San Fran were the many "big wig" docs can put there heads together and come up with a treatment plan that Kevin can stick too.

Thursday, November 5, 2009

Transfer Approved

We just found out the Kevin's transfer to UCSF Medical Center was approved!

We don't have an estimated time of departure yet.  The case manager at UCSF and the case manager at Twin Cities have a lot of paperwork to fill out  and things to communicate to each other.  It will most likely happen later on today or tonight. Dale and I (Hillary) will be following him up either tonight or tomorrow morning. We were packed and ready to go as of last night just to make sure we were ready. Darrell is going to stay at home to take care of things on this end. My mom's brother Rick is also coming to help take care of Grammy's needs.

We thank you all for your continued support and many prayers which are being answered as fast as your are sending them! We feel the comfort of the spirit continually which gives us strength to be prepared for today's chaos. San Fransisco here we come....again.

We are looking forward to visiting with Dennis (Kevin's roommate) who is still in the hospital!

Wednesday, November 4, 2009

We need another miracle

  Still waiting for the IGM results and a visit from Dr. Bonis.   I believe Kevin needs to be transferred to UCSF and that if we had insurance we'd already be there.  If the IGM results are bad enough then it might merit the trip.  Dr. Bonis is the one who will have to beg and plead with UCSF to take him. He will get the help of a case manager here to secure a place for Kevin.  Please pray mightily for Dr. Bonis to be able to make this next miracle happen.  Kevin's sodium levels are still too low so he's off IV fluids and limited to a few ounces to drink every hour.  The kidney doctor says dialysis now without the plasma exchange could open a whole new can of worms, so he's holding off on that.  We don't need anymore worms!   We've experienced too many miracles and promises through blessings to lose him now.  I believe the next miracle is on the horizon.  Your prayers make them happen.  We can't express enough how powerful your prayers have been in our daily lives.  Thank you so much.  Your prayers have given us the strength and faith to look forward to the future and make it through the day.  I also now have an attorney working to help us get approved for Medi-Cal, so say a prayer for her as well.  She happens to be the sister of a very close friend, who happened to be referred to us through two other attorneys.  Things always fit right into place just when we need it most!  I love you all,  Dale

Tuesday, November 3, 2009

Always Waiting...

No real new news today :( I found out this morning when I got to the hospital that the IGM test takes 3 to 5 days to come back. SERIOUSLY! So we waited all day again to see the doctor. I let Dr. Bonis' office know that the test was going to take longer than he anticipated thinking maybe he could help speed things up.  We got the impression that he was not going to make it to the hospital today. Dr. Jorio, the hospitalist (who we like) informed us that she was expecting the results tomorrow. This number will determine if he is "critical" enough to transfer back to San Fransisco. 

His sodium is still low and they are giving him something for potassium. I'm not sure if this one is high or low. (Sorry to many things to remember) He slept all day with little consciousness. He keeps asking if it's time to go home. Poor guy

To all our readers in the Paso Robles First Ward please remember Bill & Jean Hunt in your prayers. Bill has been in the hospital the last few days as well. I was able to visit briefly with Jean today.  It's so hard to just sit by and watch so remember her too. Thank you and love you all.

Monday, November 2, 2009

What can I say?

We may have to go back to UCSF soon. They are testing his IGM levels to see how high they are, which will help determine if UCSF will let us come back.  If this county had a plasmapheresis machine this wouldn't be necessary. If we had insurance we could get back to UCSF no problems. We would have been back after the last trip to Twin Cities ER but until Medical comes through this will be our main problem.. 
We are continuing to push with every means possible Medical but we all know how fast government works. His condition is poor today which leads us to believe that his IGM levels are high enough to make another "emergency" transfer to UCSF. We won't know for sure until tomorrow and then the transfer will take time if it even happens.
We are very frustrated with Twin Cities and would like to go back to UCSF. Kevin received Aredia in the ER again last night. You can only have it once a month and Twin Cities gave him Aredia 2 weeks ago. Can anyone say oops or maybe we should have read his file first? We are back to waiting and trying to stay on top of his doctors to make sure they are doing their jobs right. Tomorrow we should know more...hopefully.

Sunday, November 1, 2009

We just couldn't stay away

Kevin took his first new chemo drug Thalidomide Friday night. He has to take it at night because it causes drowsiness. He slept better that night than the few before it, which was nice but he was still drowsy all day Saturday.  Which means he didn't eat much the entire day and nothing for dinner at all.  When we gave him his chemo he promptly threw it up. He hadn't been feeling nauseous but we assume it was because he didn't have any food in him. Even without the second chemo pill he slept ALL DAY Sunday. This time he is coherent and hydrated but obviously getting worse. He was to weak to get to the car so we called an ambulance and within 15 short minutes our good friend Ken Smith and his Firefighting friends were "on the scene."

Ken Smith hard at work checking his (high) blood pressure
After a few directions the Ambulance & Cal Fire also arrived
(It's a lot of people in our little living room)

 Loading him up and away we go.

In many ways we are ahead of the game but we are still in the learning stage of all of this. We are at the hospital now (Sunday night) and I am sure he will be admitted in a while.  Once we get to a regular room basically all the nurses and staff know us and take great care of us all.  I will give you an update once we talk to Dr. Bonis and figure out what our next move will be.