Waiting to Turn the Corner

Finally.

After all these months of saying I would write a little something every few days, I've finally accomplished that goal. It's only been 3 days since my last post. I'm quite proud of myself even if it took me almost a year to accomplish the goal. I can't promise that it will happen again, so we'll have to just enjoy the moment.

Same old same old.

Truthfully, it seems like we've been doing the same thing for the last several weeks. He has some good days and some bad. On good days Ray gets up and walks 2-3 times, spends 2-3 hours in the chair, drinks a little, takes a bite or two of things and participates in a conversation or two. On bad days he refuses to get up and walk, has nausea and usually throws up his oral medications, sleeps most of the time, refuses anything to eat or drink, and pill-taking is a chore.

He has a little problem with confusion at times and on bad days it can be a challenge.

They're still giving him the same medications. He's getting three major anti-fungal IV meds, three major IV anti-biotics, and IV anti-fungals, as well as potassium, magnesium, IgG, tacrolimus (an anti-rejection drug), and other odds and ends drugs through the IV. They have stopped the steroids to help give the white blood cells a chance to help the lungs recover.

His condition seems to be somewhat in limbo at present. As the Dr. put it, we’re waiting for him to turn a corner. We’re waiting for his chest x-ray, nausea, appetite, or confusion to improve so we can know that he is on his way back. Unfortunately they say that in their experience, the longer it takes to turn the corner, the less likely it is for it to happen. But Ray hasn’t given up yet and neither have we. The doctors still say there’s nothing he can’t overcome, but they are concerned there is so much to for him to overcome. We’ve decided to just leave it in Heavenly Father’s hands because it’s all up to Him anyway.

So Meanwhile…

We’re camped out here at LDS Hospital in East 851. I have a window sill filled with fruit and snacks, a laptop computer, and a new tablet with all the movies, books, music, and pictures I need. I have my best friend beside me, and the love and concern of countless neighbors, friends, family and caregivers. I feel surrounded by the love and support of so many. I know we’re not alone on this journey.

May you all feel the love and warmth of those around you as we do. Good night all.

My How Time Flies

I was planning on updating this every couple of days so once again I was surprised to see over a week had past since my last post.

Tonight will be just a short update because it's already 8:30 p.m. I've been to work today already so I'm a little tired.

Ray seems to have really good days where he walks like crazy, sits up in a chair for several hours, and talks up a storm. Then he has days where he sleeps all day and is quite confused when stirred. One of the nurses said it seems like Ray has two speeds: fast forward and stop. I tend to agree.

We're still waiting for final cultures from the lungs. They did find a type of mold in one of the cultures. Crazy huh. They did say that the medications he's currently recieving will cover the mold. I think we all need to be grateful for our immune systems.

Our children, Chad, Wendy,and Adam, are becoming more frequent visitors which is a treat for Ray and me. We love our family. Our children make us proud.

Best wishes to all of you!

Oops

Hello Everyone!

As you may have noticed, there was no narrative included with my last post. I guess I decided to leave it to you to fill in the details. Actually, the truth is that I wrote for an hour and a half on that post but the hospital internet went down and when it came back up the post had disappeared. I didn’t get any sympathy from my younger son even when I explained that I had hit the save draft button several times while typing. So I will write this in my word processer and copy and paste.

The World’s Best Caregivers

As of this coming Saturday, November 6, Ray will have been in a hospital setting for 13 consecutive weeks. In the last 14 months Ray has spent 25 weeks in the hospital. The majority of those weeks (21 weeks) have been on East 8 in the LDS Hospital.

The staff on East 8 have become our second family as you can well imagine after spending so much time here. Last week, when Ray returned from a CT scan, he remarked, “Everyone knows me here. They were all calling my name and waving at me. It took me forever to get back to my room.”

I guess I realized how involved the staff are with his care when one of his caregivers, during his last transfer, said, “Oh is he leaving? I will really miss him.” And I could tell she meant it.

Downs and Ups

Last week was a little rough. Ray continues to refuse to eat more than a bite or two of meals Sometimes he says it doesn’t taste good. Other times he complains of stomach pain. So they scoped his stomach on Tuesday to see if they could find any answers. The biopsies showed some GVHD stage 1-2 of a possible 4. But we are just going to monitor for a while since treatment involves more steroids.

The CT scans of his lungs showed some nodules that were getting bigger so they did a scope of his lungs on Friday. They added an extra anti-biotic to his medication regime a couple of days ago but the pulmonologist said it would take at least 7days and possibly 14 days before they would be able to see any fungal growth. The main reason for the cultures is to make sure the medications they are using are the best medications to treat the germs in the lungs.

He had a pretty rough weekend which I think was mostly due to the culmination of the anesthetics used for the scopes—he’s never handled anesthesia very well. He had a cough from the scope and was extremely nauseated. But he did manage to enjoy a visit from his sister, Candy, and his brother, Von, who came up from Arizona to see him.

He seemed to be doing better Sunday night so I went to work on Monday. But during the day Monday, the BMT Dr. called me at work and said that the chest x-ray showed fluid in the sack around his lungs (pleural effusion). So they were going to do an ultra-sound on his lungs and then try to drain the fluid from the sacks. I headed up to the hospital after work only to find him sitting at the side of the bed involved in a lively conversation with his sister and our neighbor. Since he wasn’t in any pain or having difficulty breathing, I knew the effusion couldn’t be very bad.

A Little Improvement Goes A Long Way

The last couple of days he has been doing a lot better. He engages in conversations and seems physically stronger. He’s been walking farther each day and sits in the chair or at the side of the bed several times during the day. This is quite a change from the previous week when he was so exhausted that he wasn’t getting out of bed at all and could only say one word when someone would ask a question.

I’ve enjoyed having conversations with him the last few days. Sometimes he gets some of the facts mixed up but he’s telling jokes and using familiar phrases.

Time To Say Goodnight

It’s now 12:30 a.m. I guess I’d better wrap things up and head to the hotel to bed. I’ve been staying up in the big city (Salt Lake) since Monday. I ran home this afternoon to get some things and when I arrived at the hospital tonight , Ray had a shiner. I guess he had a fight with the bathroom floor and it looked like the floor won. They had him back in bed with Band-Aids all over the left side of his face. I added some ice to the growing black eye and he’s been asleep ever since. I imagine he’ll be pretty sore in the morning. Poor thing.

We’ve been grateful for visits and calls from family and friends. I know that Ray has been the beneficiary of your many prayers. Please forgive us for not keeping as close of contact as we/you would like. It’s been difficult for Ray to answer calls and emails because his energy has been so low. Just know that we love and appreciate all your love and concern for us and you are in our thoughts and prayers as well. Love to all.

Nineteen Weeks and More

Musical Hospitals

Amazing How Time Flies

When I realized that it was August 22 when I last posted, I was shocked. I knew it had been a while but I didn't think it had been that long. Sorry to any of you who were trying to keep updated.

We are presently on the bone marrow transplant floor in LDS hospital in room E851. No, we have not been here since August 6. We have played "musical hospitals" though. It's been a challenge to keep up with where Ray is located from day to day--kind of like a Where's Waldo? book. I have not been very good about keeping up with the exact dates but let me see if I can give you an overview.

As Ray continued to gain his strength back in Aug, we decided the best thing for him would be a rehabilitation center that could concentrate on physical therapy to help him get more strength back so he could return home. Due to his rapid progress he was overqualified for the acute rehab center we wanted to send him to. Then, due to insurance issues he was not accepted to our 2nd choice. They finally found an Long Term Acute Care (LTAC) center that the insurance would accept.

The Move

So on Wed, Aug 31, Ray transferred to Promise LTAC which was located in Salt Lake Regional Hospital--the old Holy Cross hospital located on South Temple and 10th East. They still have the original chapel with gorgeous stained glass windows that was built in the early 1900's. His room had a huge window with a southern view over the Salt Lake Valley. Sunsets were stunning and it was interesting to watch the lightening and cloud formations when storms traveled across the valley.

The LTAC was in the process of moving to a new facility and on Wed, September 14, they moved Ray to their new facility located on the 4th floor at LDS hospital. This was very confusing since the care center wasn't affiliated with IHC. They were just renting space from the LDS hospital. But it made it convenient for visiting doctors. It was a beautiful new facility with large rooms. But I was disappointed in the quality of care. Being a nurse makes it hard to put up with sub-standard care.

Even though we were hoping that Ray's strength would improve, it seemed to do just the opposite. Within two-and-a-half weeks he was so weak and ill that we thought for sure he would be leaving us soon. After his visit with Ray Friday, Sept 16, my brother-in-law remarked Ray wouldn't be around much longer without divine intervention. I know of several people who fasted that Sunday in Ray's behalf. On Monday he had a scope. I was extremely concerned that the prep for the scope would be too much for him to handle. And it would have been if it hadn't been for me insisting on getting certain labs back before the procedure and the quick intervention measures taken by our friends at the bone marrow clinic. They sent him back to the LTAC, but at Wednesday's BMT clinic appt., I put my foot down and they transferred him back to BMT floor at LDS hospital (East 8). That was move #4.

He's Back

So again he received another "tune up." Over the next few days they gave him several units of blood and platelets, adjusted his meds, and re-balanced his electrolytes. Because of the vigilant care of the doctors and nurses, his familiarity with his surroundings, the love and compassion of his care givers, and, I'm sure, the numerous prayers in his behalf from all of you, within a few days he was like a new person. It was hard to believe he had been so deathly ill just a few day before.

We weren't eager to move anywhere else for the next while hoping to give his body time to really recuperate so he could come home. But within 8 days he had regained so much strength and was doing so well that we decided to check into getting him into the acute rehab program at IMC so he could learn to do stairs and get a little more cognitive stimulation.

On the Road Again

They accepted Ray at IMC rehab, so Tues, Oct 4th we made move #5 to the beautiful new Intermountain Medical Center on 5300 South and 300 West. They had him on the 12th floor--another large room with a big window facing West with a great view of the Oquirrh mountains and gorgeous sunsets. They started therapy on Wed and when I went to see him that night I could already tell he was improving. He had good conversations with people and he was able to walk further and do more things for himself each day. The only problem was that his appetite was worsening. Each day he would eat a little less and by Sat night he had stopped eating. Sun night and Mon morning he started with pretty intense diarrhea, so when I showed up to Mon afternoon to accompany him to his BMT clinic visit, rehab strongly hinted that he probably would be staying at LDS hospital after his clinic visit.

So he was admitted to LDS hospital Mon, Oct 10 and that's where we are today. He has been in a hospital or care center for the last 10 weeks. This makes his longest hospital stay since his bone marrow transplant last January, which lasted 6 weeks.

Transplant Updates

Today marks 270 days since transplant. Ray continues to hang in there even though it's a day to day process. They continue to say the transplant was a success as Ray continues to be cancer free. But he's faced many hurdles. The doctors and PAs alike say that most people don't survive all the hurdles Ray has been through and then add, "but Ray keeps coming back." They've told us that so far everything that's a problem right now is not a deal breaker, but feel that if one of his problems worsens or he has one more set back it probably do him in. They say as long as he wants to fight, they're still in it with him.

He continues to have signs of GVHD with possible liver and eye involvement. The CMV was all over his gut three weeks ago. The fungal infection in his lungs continues to wax and wain from week to week. They finally got him down to low dose steroids hoping that his immune system will help a little in the fight against the fungal and viral infections.

He is still extremely weak, staying in bed and sleeping most of the day. He fell on this morning's journey to the bathroom because his legs just gave out. His blood counts continue to be low most likely due to the strong medications needed to keep the infections in check. He has days where he get confused or his short-term memory is shot. Nausea now seems to be around more.

His attitude is wonderful. He continues to say he's fine almost every time someone asks him how he is. He doesn't complain of much and is usually willing to try to do whatever his care givers ask. When I ask him how he is, he replies, "I'm doing fine, really."

The Rollercoaster

So we continue on this roller coaster ride. A while back I was hoping that the ride would end and Ray and I could get off so everything could calm down. But it seems that is not going to be the case yet. So we'll make sure our seat belts are still fastened and keep on keeping on.

Thanks again to you all for your love and prayers. We have felt your strength throughout our journey. We wish the best to you and your family.

We send you our love,

Ray and Chris

We Are Here, We Are Here, We Are Here!

Yes, Everyone, The Youngs Do Exist!

Quite possible you might think the Youngs have disappeared from off the face of the earth. This would be very understandable because we have made very little contact with the world outside of the Bone Marrow Transplant realm. But we are, in fact, alive and moving forward on our journey. And just like the Whos in Whoville--we are here!

Once again we are at LDS Hospital. Ray is in for a "tune up" as they told him. He came in Saturday, Aug 6. with painful, red, and swollen legs and feet, as well as a low-grade fever and an abnormal chest x-ray. Cellulitis and pneumonia were the admitting diagnoses. A bronchoscopy (lung scope) showed two different fungi were growing in the lungs. It's amazing what can happen when your immune system is a little under the weather.

Transplant Updates

Ray is now at day 216 post transplant. There have been a lot of ups and downs along the way. The two main obstacles are the cyclo-meglo virus (CMV) and graft vs host disease (GVHD). Both of these can cause major problems if left unchecked, so they do weekly blood tests to check for the CMV, and extensive questioning about his stomach symptoms at our weekly clinic visits to rule out GVHD flare ups. Sometimes the blood tests are positive so they start an additional IV medication until the tests are negative. Sometimes his stomach symptoms indicate a GVHD flare so they give him more steroids to calm things down. We don't seem to make it too many weeks without one or the other acting up.

The steroids suppress the immune system even further, so he's caught some unusual bugs over the last few month's as well--c diff and roto-virus to name a couple. He can't seem taper down to less than 40 mg of Prednisone daily (a normal dose being 5 mg daily) without having a GVHD flare, but they are trying to taper him down as fast as they can right now because of the lung infections. So we have our fingers crossed.

The steroids have also taken a toll on his muscles. His arms and legs almost seem to be skin and bones. The muscles that have taken the biggest toll are those he uses to stand up. It's amazing that a medication can cause such havoc. He exercises leg muscles several times a day to try and keep up his lower-body strength, but it's an uphill battle. They always remark at how much strength he has in his upper body though.

All-in-all, they say he still has a good chance of licking this cancer. They also say he is doing good for all the hurdles he's had to over come. They said he would probably realistically be receiving treatment of some sort for the next 7-8 years.

GVHD a Blessing?

In the last couple of weeks I've talked to a couple of people affected by multiple meyloma and bone marrow transplants. The one said she had had a MUD (matched, unrelated donor) transplant 6 years ago and had made friends with several others going through transplant at the same time. She said 5 of her friends never had any GVHD symptoms, and they have all passed on. She said she was still dealing with some of the side effects of GVHD but she was sure she still alive because of it.

Another lady said her sister had a bone marrow transplant and at first they were so grateful that she didn't have any GVHD symptoms. She now says she realizes they were praying for the wrong thing. She understands now that some GVHD is wanted because it can turn to GVM (graft vs meyloma) which is what eventually cures the cancer. Her sister passed away at 100 days.

Grateful For Life

So for now, we are counting our blessings. We are grateful that Ray's life has been extended. We are grateful for GVHD that can bring about a cure for his cancer. We are grateful for modern medicine and drugs that combat infection. We are grateful for kind and caring healthcare professionals who keep on top of tests and treatments. We are grateful for doctors who made it their passion to fight bone marrow cancer.

But most of all we are grateful for wonderful family, friends, and neighbors who never tire in providing care and concern as we continue on this journey. We send our love to you all. And we send an extra special love to our AMAZING children.

God bless you all.

It's Amazing How Disruptive a Little Bug Can Be

Not Quite Over

Ray's now been in the hospital 17 days. Amazing that it's taken that long to recuperate from a infestation of a microscopic organism. I'm so grateful that people have made it their life's work to study and kill bacteria otherwise Ray probably wouldn't be here.

He finally seems to be back to his old self. They keep postponing the date of his discharge mainly due to a national shortage of the antibiotic he is on. Today they said they had only seven doses left--a 2 day supply since he gets an IV dose every 6 hours. The pharmacy here has been calling all over the state to try and track down enough for his treatment. There has been some talk about changing the medication to an oral dose but that would mean 6 pills every 6 hours. There is concern as to if his stomach can handle it. The talk is to try the oral medication Monday and send him home Tues if his system can handle it. That would mean he's been in the hospital almost three weeks. It's wild to think he's been here almost half as long as he was here for his transplant.

Transplant News

Today I asked the doctor a question many people have asked me, "Does it look like the transplant worked?" She responded that we are coming up on day 100 where they do testing to see the state of his myeloma. The tests will give us information on his progress so stay tuned.

Meanwhile, Ray's blood counts stay stable which is a good sign. They have gone down from what they were before he got sick, but they are well above levels where a transfusion would be necessary, so he's holding his own. The doctor did say that this infection was a major assault on his new immune system so they will use steroids longer to try to keep the baby immune system from being overwhelmed.

So Here We Be

We've had several adventures during the past 17 days--fevers, delirium, ulcers, cheek swelling, ICU visits, chest pain, MRIs, colonoscopies, EKGs, wild dreams, and so forth. I guess we'll have many things to talk about for years to come.

Tomorrow we will celebrate 31 years of marriage. It, too, has been quite the adventure. It's amazing all that has happened over the years. I'm grateful for the opportunity to have spent 31 years with an amazing man. I'm also grateful to be able to celebrate a 31st anniversary with Ray, the love of my life.

Some People Will Do Anything to Keep From Being Bored

I don't know for sure what it means when it takes a return hospital stay to find time to write on this blog, but that is exactly what happened. Ray was admitted to LDS Hospital Thursday, March 31, with a fever that registered 104 on our home thermometer. Crazy huh!

The Events

I got up at 5:30 Thursday morning thinking I would slip in a couple of hours of work. I heard Ray get up but I didn't think too much about it only that it was strange he hadn't gone into the bathroom. I found him in his office 20 minutes later. He looked like he had fallen asleep on his chair but he didn't respond to me calling his name. When I touched him I could tell he had a high fever so I took his temp (104), called the hospital to tell them we were coming up, and called my son-in-law to come help me get Ray into the car. We were on the way to our current adventure.

They did blood cultures the minute we got him up to the 8th floor and then started anti-biotics. He was pretty out of it most of the day and tried to get out of bed several times, pulling on IV's and oxygen tubes. He responded to questions with grunting. Our son, Adam, came up and spent what turned out to be a very long, hard night with Ray.

Friday Ray seemed a little more oriented to what was going on. He knew he was in the hospital and when asked if he knew why he was there, he'd reply, "Fever?" He continued to run fevers all day ranging from 102-104. They kept him on IV tylenol and also kept adding more types of anti-biotics to his IV. They said until they identified the bug in his blood stream they would use the kitchen sink approach and keep throwing anti-biotics at him hoping that one would stop the bug from growing. Our daughter, Wendy, came and spent another long night with Ray.

At some point during the night, Ray started bleeding. At 8am Saturday morning, Wendy called me and said they were transferring Ray to the ICU. In a way I was relieved because I knew Ray needed one on one nursing care and we, as a family, were getting exhausted trying to assist with his intense care.

While in the ICU, they scoped him and found the bleeding was coming from an ulcer. Also, the micro results came back identifying the bug as listeria. They told us listeria has an affinity for the brain and sometimes the heart, but is very susceptible to penicillin. Therefore it is considered a nasty bug that is highly responsive to anti-biotic treatment. The infectious disease doctor asked a lot of specific questions about Ray's diet explaining that he most likely ingested the bug. Also, she said because of it's affinity for the brain, they have to take into consideration that he might have some meningitis because of his unresponsiveness Thursday and part of Friday. So that means a four-week round of IV anti-biotics. They said they could transition those to be received at home but there was no indication of when he might leave the hospital.

Chad, our oldest son, came up to spend the day with Ray in the ICU and Adam pulled the night duty again. My kids are amazing. I have no idea what I would do without them.

So Sunday afternoon Ray left the ICU and returned to the 8th floor, back to the room he started in, which was great because we had left his phone charger in the room. And sure enough the phone charger was plugged into the wall where we left it. I guess the nursing staff took it seriously when I said save his room, we'll be back.

Today is Tuesday. We continue with the IV anti-biotics although Ray has thrown another blip in the road. Today, after breakfast his right cheek started swelling intensely, just below the ear. They first suspected an allergy to penicillin especially when they started a new dose around noon and the swelling started again. Both swellings coincided directly with the time he ate. They did an MRI and changed the anti-biotics. He just finished some jello and a drink and the swelling started again. So he's once again the mystery of the day! They're thinking maybe a blocked saliva gland but no one can say for sure.

A Glimmer of Normal

When Ray returned from radiology today he started teasing the nurse. That's the first I've seen him act like himself since last Wednesday. He asked a doctor about the doctor's recent vacation--something they had talked about when he was here for transplant. Ray told us about his funny dream which made his cheek swell up.

Every day a little improvement. Yea!

It's About Time

Returning Home

After a fun-filled 45 days and 44 nights (as the travel industry would say), Ray came home from the hospital. That was Thursday, February 24. It's now March 6. The hospital seemed like forever to me but not to Ray. Now I'm the one saying where does the time go?

It was a little hectic trying to coordinate things before Ray came home. Carpets needed cleaning. Rooms needed some re-arranging. The house needed an overall mini-sterilization. I had commitments at work that I couldn't change. But thanks to my family and a very generous sister-in-law, we were able to get things together for the return of our beloved husband, father, and brother, Ray.

So Good to be Home

That heading says it all. It's soooo good to be home. There were several times in the hospital that I told Ray, "I just want to take you home."

It reminded me of one of my favorite stories when I was a child, Heidi. In the book (and movie) Heidi stays with a little girl that is ill and all Heidi can think about is taking this girl back to her mountain home where she lives with her grandfather. She is positive the mountain air will make the girl better. Sure enough, the girl comes to visit and gains enough strength to be able to walk again. And Heidi says over and over, "I knew it would make you well. I just knew it."

Coming home has been healing for both of us. We are grateful to have survived that tremendous ordeal, incredible journey, strenuous mountain climbing, or whatever it should be called, bone marrow transplant and hospital stay. We are grateful to be together. And we are grateful for Ray's gradual return of health and strength.

Transplant Updates

We are now at day 46 (they gage everything by the post transplant day number.) Ray has updated his blog with several of the things that are happening now--IVs, pills, Dr. appointments, lab draws, etc. I feel like I do almost as much nursing here as I do at work--and sometimes a little more with a 24/7 shift at home. Ray was worried at first that I might not remember all the pills and medications. I wondered what he thought I did at work. The medication schedules, IV administrations, injections, blood pressures, and so on are no biggie. It helps me to keep my nursing skills up since I'm not working as much right now. I guess it also gives Ray an opportunity to see what I've been doing the last 30 years.

Ray still continues to fight GVHD (graft verses host disease). Even though GVHD is common post transplant, it is also the #1 cause of fatality post transplant, so it's not to be taken lightly. This was the main reason for the extra 2 week hospital stay. They (and I) were a little nervous that Ray's total body rash came back (the first sign of GVHD) four days after leaving the hospital, since he was still on the highest dose of prednisone deemed safe (200 mg/day as opposed to a normal 5mg/day dose when needed). And prednisone is the treatment for GVHD.

In the hospital he was receiving almost all of his medications through the IV. Now he is talking all but two of the 17 different medications by mouth (during the course of the day he receives 33 doses of these different medications). Since oral absorption is different than IV, we are still trying to adjust drug levels in his body. The trickiest drugs are the anti-rejection drugs. They have changed one of his drug's dose 4 times over the last 10 days. They are hoping that the GVHD flared a little because he wasn't at a therapeutic level on this anti-rejection med. It seems like that might be the case because the level is going up and his rashes are going down. Good!

Settling In

We're getting used to this new routine of being home. Being around each other 24/7 takes a little adjustment especially if we're both tired. I think he over exerts at times and he's just glad to be free. But I'm grateful for that kind of adjustment. Besides, we get to go out on little outings and I get an occasional trip to the store. I'm glad that the doctor said to keep trips to an hour because it keeps me from spending too much.

It is nice to think that the chemo treatments should be behind us. He's still not out of the woods so to speak. There probably will be some more rough road ahead. But for now, I'm going to enjoy being together without beepers, tethering IVs, bothersome coughs, or constant interruption. It's nice to be home together.

Little by Little....

The 40 day thing.

If you read Ray's post today, you learned that he has now been in the hospital 40 days and 40 nights. He said it's hard to believe it has been that long. I say has it only been 40 days?

I've been here at the hospital for a portion of each of those 40 days. Most of the days I've traveled from home to be here--an hour and a half round trip. Some of the days I have come here from my work in Provo, making close to a three hour driving trip those days. A couple of times I've made two trips to the hospital in one day. I estimate that I've spent over 72 hours in my car (the equivalent of three complete days.) I'm sorry to say that I don't have much to show for those 72 hours like listening to 30 books or finishing the New Testament reading, etc. But I do have a car that is filled with two overnight bags, juice bottles, water bottles, an extra coat, two pair of shoes, a change of clothing, Ray's dirty laundry, a See's Candy box, gas receipts, and, of course, garbage. I sometimes feel like I'm living out of my car like some homeless person. I guess I'll call my Explorer my home away from home.

Seriously though, Ray has been great. On his visit today, the PA remarked how amazingly patient Ray has been through all of this. He's right.

He's Back

For the past week, Ray has been acting more and more like his old self. He seems to have more energy and no longer seems continually exhausted. His sense of humor is back in full force and he has fun joking with the nurses. He's also teaching occasional grammar lessons when needed to the staff (sound familiar?)

He has a mini office set up in his room with two bedside tables in the corner to hold his computer and printer, and a chair. There's also an exercise bike and another chair for watching TV or visitors in another corner. There's a recliner in the other corner and the hospital bed is in the center. He putters around during the day, working on the computer for a while, then goes for a walk, watches TV, or rides a bike. He's becoming an exercise fanatic riding the bike for 40 min yesterday while watching a DVD. Sweet.

It's soooo good to see him looking and acting better.

Transplant Updates

He continues on high doses of steroids for his GVHD and he seems to be tolerating them pretty well. He just finished his second meal that actually had some solids in it. He had Rice Crispies for lunch and rice for dinner. For someone who was allowed ice chips only to wet his mouth for over 9 days, this is a huge improvement. His system seems to be tolerating the new diet well so tomorrow they may let him add some protein. Yum.

He still is getting complete nutrition through his IV as well as several other meds. They say if he progresses his diet to eat enough to sustain himself without any setbacks, he'll probably go home by the end of the week.

So we're progressing. The main thing is that there is, indeed, progression. The blood counts continue to be good. The new bone marrow cells are doing what they're programed to do. So we'll continue on our road to healing, little by little.

Hello Again

Number 1 Blogger Back on Board

So you've probably seen that Ray has surfaced enough to blog again. Yea! Since I have been way overwhelmed this week with inside-of and outside-of hospital duties, I was glad to see he was able to post and keep everyone updated.

I worked a couple of days this week, attended some work related meetings, arranged to meet with doctors and nurses as they discussed and made major changes to Ray's treatment, tried to be available for Ray during his diagnostic procedures, as well as doing my usual care-giving duty: seeing to the comfort and care of my #1 patient. By the end of the week I felt pretty exhausted and overwhelmed.

Last night as I got ready to leave, Ray asked, "Are you going to stay up here?" Skipping a 50 minute drive home alone in the dark sounded so good that I drove down the hill and was checked into the Marriott in less than 10 minutes. I felt like I was in heaven. The beds were so comfortable and it was dark, warm, and quite. I slept so long that I missed the hospital Sacrament Meeting this morning. I also got a late check-out so I could return to take a Sunday early afternoon nap. A little extra sleep and a touch of spoiling can go a long way. Guess I better not get used to it.

The Jury Is In

Well, as you have probably figured out or read by now, they have diagnosed Ray with graft verses host disease.

The good news is 1) They are calling it mild--grade I or II. 2) The steroids seem to be helping with the symptoms. 3) They feel they caught it early so the treatment seems to be working. 4) He's feeling a lot better!

The not so good news 1) He has to take large amounts of medications with some possible scary side effects. 2) The length of time that he has to take the anti-rejection drugs with their not-so-fun side effects has just doubled. 3) The overall recovery time will be increased.

I didn't take this diagnosis lying down. I guess this might have been one time that I wished I didn't know so much. I was a little feisty, making them hold off treatment until they explained completely why they had come to their conclusion. I actually told Ray to refuse treatment until we had a chance to sit down and talk things over with the doctor. I think I might have caused a little stir among the care-giving personnel. But I knew this change in treatment could have major effects on Ray and quality of life. So I wanted them to be sure. It wasn't until today when I had a chance to talk with Dr. Peterson, the medical director of the BMT program, that I was finally able to feel a little more comfortable about the direction of treatment.

Transplant Updates

It has now been an entire week since Ray has had anything other than ice chips to eat or drink. It's been over two weeks since he's had a meal of any substance. He says he really doesn't feel hungry but today food is starting to sound good to him. It's strange to think he hasn't eaten anything for that long and amazing to think that they have figured out how to nourish his body through the blood stream.

He was officially taken off isolation for Influenza A yesterday. What a difference to see the entire face of the staff here instead of just their eyes, ears, and hair--the only parts that were visible with a mask on. We got to change rooms to a positive pressure room which is closer to things. I lost my private bathroom though. But Ray gets to take walks in the halls now. And he is the one putting on the yellow gown, mask and gloves instead of the care-givers.

Ray looks and seems to feel a lot better. He is quite weak but his spirits are up (as you can tell from his blog.) He was a lot more patient with the events of this week than I was. I guess that's why it's good to have two in a marriage--one can be sane when the other one isn't.

Our love goes out to all of you as you participate in our journey. May you receive the blessings you need and deserve.

Now You Have It....Now You Don't

Another Waiting Game

Well, I'm not sure what to say--Ray would comment, "That's a first!" They have finally decided to do a scope to see if they can get a definitive answer on whether his multiple, evasive symptoms are caused by GVHD (graft-verses-host-disease.) Sometimes just looking at the gut will give them enough information. If not, then they do a biopsy.

We're not exactly sure when the scope will take place because it even though it was decided today it was time to scope, they will have to wait to contact the gastroenterologist sometime tomorrow and see when he can work it into his schedule--that could be morning, noon, or evening.

Meanwhile they have taken Ray off all food and water. This is for a couple of reasons. 1) So he'll have nothing on his stomach when they give him the anesthesia tomorrow and 2) If it is GVHD they don't let him eat or drink anything to completely rest the gut.

So we wait to find out when the scope will be and we wait to find out the results from the scope.

Graft Verses Host Disease

GVHD is where the donor (graft) cells start attacking the receiver (host) cells. It's called acute if it occurs in the first 100 days after transplant. It can be said that it is an unwanted complication. Symptoms include diarrhea, skin rashes and unusual pigmentation, red skin, fever, dry eyes and mouth. Since Ray has had some of these symptoms since he was first admitted, it's hard to determine for sure if it truly is GVHD. They say the scope is the best way to tell what's going on so we're having a scope.

They treat GVHD with high doses of steroids and keep the patient without anything to eat or drink for a week or two to repair the gut. Then they back off on the steroids and slowly introduce water, liquids, and then solids back into the diet.

The Ups and Downs

Last night was the first night since Jan 28th that Ray was alone during the night. It was good to have him well enough to be able to leave alone for a few hours. It's now become hard to leave him alone after spending so much time together.

As you've seen from Ray's recent blog, the new stem cells are producing nicely. His white blood cells are within normal limits. The PA came in last Thurs saying he could probably go home Sunday (today) because his counts were great. I was shocked. After how sick he had been they actually were thinking about sending him home.

We were exhausted from the hospital so our home was no where near ready for Ray to come home to. I panicked a little the next day when they brought the discharge planner in to start setting things up. But when he got another fever Fri, they said said he bought himself a little more time in the hospital.

Now they're talking about possible GVHD and an additional 2-3 weeks in the hospital, I wouldn't mind going back to the Sunday discharge. Oh well. We'll just stay on the ride and hang on.

What a Difference a Day Makes

Intense vs INTENSE

I would have to say that the last 9 days were some of the most intense I've ever experience. I'm not quite sure why, but I've decided to share a few of the things that have been going on here. Maybe it's to prove to myself that it, in fact, was INTENSE.

The nausea has been Ray's constant companion. He's recieved up to 4 different nausea medications several times in a day.

He’s still receiving his nutrition through the IV. The nausea eased up a bit a couple days ago, but he has no desire to eat yet. He started eating a little Tuesday (500 calories) and had about the same today. He’ll still be on the TPN until he eats his normal calorie intake two days in a row.

He’s had a 104.6 fever two different times so we’ve had to cover him with ice packs until they came down. I changed the ice packs all night long one night and my daughter did the same thing another night that she was here. His fevers were over 101 for 5 days in a row. He had the chills so bad at times that his whole body would just shake uncontrollably.

One of the most annoying things throughout this recovery time has been a cough. They're not sure if it is flu related or from transplant or fluid retention. But whatever the cause, he has several coughing spell during the day and night which have interrupted sleep and worsened the headaches and nausea.

He developed an irregular heartbeat and has been on constant monitoring (telemetry) the last four days to make sure all is OK there.

For the last 8 days my children and I have been taking turns to make sure that someone was here with Ray at all times. I have not included everything that has happened this last while, but I'm sure I've probably written more than enough for whoever reads this.

Is this the Same Guy?

Last night (Wed 2-2-11) my son, Chad, stayed with his dad so I could go home after a 36 hour stent and sleep in my own bed. Ray had been asleep most of the day Wednesday because of another rough night.

I returned today to find a goodlooking man, sitting up in his bed, smiling and visiting with my son. He had just finished some Cheerios and orange juice and was talking about taking a shower. He had already seen the PA and told me that she had said that his counts were great and that they needed to start getting him ready for his discharge in the next few days. Was I in the right room? Was this the same person that I had been with the day before?

The lab results were wonderful. WBCs were 4.2 today and ANC was 3.2. That's higher than they've been since this all started a year ago. The Hct went up to 31.3 and platelets were 145. So those new stem cells (now bone marrow cells) are working hard. Yippee.

Progress

Today was day 15. They said BMT patients usually feel better about day 15. They were right. The cardiologist came in today and said he thought Ray's heart was fine so they discontinued his monitoring. They've started giving him more of his medications in pill form, so his infusions have been cut way down. The desire to eat comes and goes along with occasional nausea, but that is a big improvement from two days ago. The cough is still a problem but seems to be de-intensifying.

I don't think his discharge from the hospital will be in the next few days. But it will come soon. There is a little light at the end of the tunnel.

Home away from Home

A New Twist on Camping

I've been camped out at LDS hospital room E840 for the last three nights. It's not too bad. They've brought me blankets, slippers, and pillows--10 to be exact. (I am a pillow hound at home.) I sleep on a recliner that lays almost flat like a bed. It's right next to a window sill where I put my water and personal items. There's a little-used bathroom across the hall that makes it seem like I have a private bath, and a blanket warmer. The only problem is my roommate is up about every two hours in the night. At least it is warm and lighted when I have to get up in the night--not like real camping.

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A Few More Cell Everyday

The blood cell counts are starting to increase. They kept going down for over a week. Then they stayed on the bottom for about three day. Ray's had a total of 7 transfusions over the last few days: 4 units of blood and 3 units of platelets. But the last three days have shown little increases. Yippee!

For those of you with inquiring minds, today's labs were HCT 29: norm 41-53, WBC 0.8: norm 3.6-10.6, Platelets 37: norm 150-400, and the all important ANC (absolute nertrophil count) 0.1: norm 1.8-6.8.

His neutrophil count now officially registers on the lab results 0.1 or 100. I asked the doctor if the neutrophils could come from anywhere else but the new bone marrow cells and she said no. So the transplanted stem cells are starting to become blood-cell producing bone marrow cells.

Not All a Bed of Roses

Ray continues to fight nausea, diarrhea, coughing fits, and headaches. His eyelids are bruised and he had a little bleeding in his eyes because of the pressure from coughing and the low platelet count which hinders proper blood clotting. His fever has been under 101 for 24 hrs now so his bright red skin is starting to tone down. That made a new development more obvious. He has a rash over most of his body. They think the most likely reason is acute graft vs host disease and they took a skin biopsy today to get a more definite diagnosis.

Meanwhile yesterday and today they gave him diuretics to decrease his fluids because most of the umpteen meds he is receiving are mixed with a cup or more of fluid. So tonight he is breathing better and the cough has settled down. We're grateful for little improvements.

Tonight's order is for restful, deep sleep.

Home Sweet Home

Tonight, before I went down to the hospital cafeteria for dinner, Ray and I were trying to pick a DVD to watch. I left him with instructions to decide what he would like to see while I left to eat. When I returned Ray said, "I decided to wait until you got home and let you pick the movie."

I took some pictures today of our home away from home. Tomorrow I hope to be able to figure out how to get them from my phone to this blog.

Good night all.

Day 10--We're into double digits!

The Roller Coaster.

Today (Sat, Jan 29) is day 10 post transplant. We continue to be on a roller coaster ride. Temp goes up and down (but it never goes much below 100). Nausea continues with some times being more intense than others. The headaches come and go. And a cough has returned, causing havoc with the nausea and headache. Tonight, once again, he is packed in ice trying to lower his 104.5 degree temp. The consensus is that the flu has returned. Actually, they figure that since he has no immune system the flu never went away. They think the anti-flu med kept it at bay. But since they stopped it 2 days ago the symptoms have become more intense. They do say that graft-verses-host disease can cause some of his symptoms but they're not certain that is actually what is happening. So we'll take the flu medication again and wait and see.

We Have Nuetrophils

Yesterday the doctor said that the morning labs showed 18 neutrophils. Granted the normal number of neutrophils is around 55, but when you're at 0, anything is an improvement. The doctor cautiously said that could be a sign of some bone marrow recovery. When we showed her the stuffed neutrophil that our son, Chad, had sent us she said, "I was wrong. He has 19 neutrophils."

Today the doctor said that he had a 0.3 WBC count (normal is 3.6-10, but again we'll take the 0.3 over 0.0 anytime) and that 30% were monocytes (normal being 0-12%). She said that typically the monocytes show up first so the above normal amount could possibly be another sign of the bone marrow recovering. Again this was said with caution.

A Night in the Hospital

It has been about 5 1/2 years since I spent a night in the hospital. Last night I had the opportunity to see how much had changed since my last overnight experience in a hospital (which was actually here at LDSH). Guess what?! Not much has changed. Things finally settled down about midnight, so we were just starting to sleep when the aid came in to take vital signs at 12:30am. Again we we're about asleep and the nurse came in at 2 am to hang a med. So I did some clock watching until about 4:30 when the nurse brought in another med. I think then I might have dozed off and on--in between giving Ray drinks of water and applying ice packs--until they came in at 6:30 to get ready for shift change. The rest of the morning is a blur. But thanks to a loving daughter, I was able to leave this afternoon for 5 hours to shower and take a nap.

Driving home late at night and going to bed alone these last 18 days since Ray has been in the hospital has been a challenge. I could tell he wanted me to stay last night but he didn't put any pressure for on me to stay. It was nice to spend a night together again even under the circumstances. The two times he took my hand during the night and smiled at me more than made up for any amount of lost sleep.

Stay the Course

So we continue on, trying to keep flu symptoms and medication side effects tolerable until the bone marrow starts its major recovery. The doctor said as soon as Ray gets some white blood cells, they will start healing the sores in his alimentary system as well as combat the flu virus, giving him some major relief from these symptoms. A properly functioning human body is amazing.

The care here is wonderful. The caregivers--aides, techs, nurses, and doctors alike--are attentive, knowledgeable, eager to help, great team players, and compassionate. I can feel they are all working to help Ray achieve the best possible outcome with the least amount of discomfort as possible.

The compassion shown by the PA, Ali, today was touching. We met her several weeks ago on one of Ray's chemo hospital stays but we haven't seen her since then. She sat down on Ray's bed today and told him how sorry she was that it has been so rough. She told him to hang in there and promised him things would get better. Then she said firmly to Ray, "So promise me you'll hang in there, okay?" With that kind of a request, he couldn't say no.

So I pass that on to all of you. "Promise me you'll hang in there, okay?"

Our love to you all.

Good or Bad--No In-betweens

Last night about 9:30, Ray got up and after a few minutes he decided he felt well enough to shower. Then he sat in the chair and had some cookies and milk. Trust him to have milk and cookies as soon as he felt like eating.

Right now I'm sitting here in Ray's hospital room listening to one of the 5 IV pumps alarm-a frequent sound since the pump alarms go off whenever an infusion is complete. It's shift change so responding to a call light takes a little longer. I'm counting 7 IVs running right now. It's an art to just figure out what line is going in where.

Ray felt pretty good this morning--even said he did some work on the computer. This afternoon and evening have been a little rough. I guess he's going to be an "all or nothing" type. Either he'll feel good or bad with no in-between.

He proved my theory this evening. He spiked a fever of 104.8. That got the nurses jumping. Soon he was covered in ice bags. The nausea returned. His cough--which had all but disappeared--went out of control and he turned bright red all over. So now, two hours later and thanks to modern medicine, the fever is down to 100.6, the cough has gone, the nausea calmed down, and he has started to relax. Maybe he will get some sleep tonight.

Again, no one can say for sure what is going on. They continue to say this is the rough part of the transplant. At least that means they can't find anything bad going on. They say sometimes patients get fevers when the new cells are en-grafting. That's a good sign. But high fevers are not preferred. Again Ray has given the fever thing his all.

Well, it looks like he finally is getting some sleep. Yea! The other day he told one of the nurses to just put him to sleep and wake him up when it was all over. The nurse said he had heard that before. All in all, Ray's a trooper. His spirits are up most of the time and he's constantly looking for the positive.

We continue to be amazed by the outpouring of love and concern from all. We're grateful for great ward members, good friends, and wonderful families. Our love to you all!

An interesting side light:

Our nurse today said that one of her nursing instructors told them in class a few weeks ago that a lot of the donors have been from Germany. She said she thought there was some kind of government requirement for Germans to join the bone marrow registry. Interesting. Ray already figured, through the little information we received about the donor, that he wasn't from the USA and that he had been in Europe sometime between 1980 and 1996. What if the donor is from Germany and related to Ray? (Ray's grandfather was German and came to America when he was 10) Hmmm............

Third and final post for the day!

Day 8

Today is Ray's second complete day of not eating due to extreme nausea. He's still suffering with headaches. The doctor and the PA say this is the rough time for bone marrow transplant patients. They are careful to not say this is normal, saying everyone is different. They don't like to give any time frames either. I think the phrase I've heard the most over the past 10 months is, "We'll just wait and see what happens." But they are very attentive and concerned about Ray. After listening to how he felt today, they changed some meds to see if that would help alleviate his headaches. They also ordered lab tests to make sure no infections are developing and a CT scan of the brain to make sure there was nothing going on there to contribute to his headaches.

After questioning almost everyone I've seen today, I have concluded that it is not uncommon for BMT patients to experience what Ray is experiencing. The consensus is that patients start feeling better when they start making their own blood cells meaning the new bone marrow engrafts and starts producing cells. The earliest that happens is day 12 but usually the turn around, so to speak, is day 15--still a week away. The nausea can last a couple of days up to several weeks depending on what's causing it. Side effects from the 2nd cheomo Ray recieved have been known to linger for months. Since there are so many variables, they never try to predict what is going to happen with a patient.

So, meanwhile, Ray's counts are dropping. He received platelets yesterday and blood and platelets today. They are giving him nutrition through the IV (TPN--total parenteral nutrition), as well as multiple antibiotics and numerous anti-nausea meds. Ray still tested positive for influenza A so the headaches and nausea could also be due to the flu or to meds or to chemo. Take your pick.

I've been here everyday so far. Ray has often commented that he's glad for the company. He really is isolated. They won't let him leave the room until he tests negative for the flu. He says he likes me to talk to the nurses and help him keep the meds they've given him straight. I did manage to get a few hours in at work this week, but it's hard to concentrate with everything that's happening here. LDSH has become my second home. I have my computer, a book to read, some snacks, and Ray. What else do I need?

My children are my biggest blessings. The physical and emotional support they offer us is amazing. I don't know what I'd do without them.

Thanks to all of you for your prayers, love, and concern. The Lord is watching over us.

I hope to keep you posted on things here.

Love, Chris

Transplant Updates

Overview:

Ray received chemo for seven days to kill off bone marrow, preparatory for his stem cell transplant. As far as we can tell, the chemo problems for those seven days were pretty minimal. He did, however, contract influenza A (the flu) and experienced upper respiratory symptoms, some nausea, and headaches throughout the week. They started him on some anti-flu medication (Tamiflu) and some extra antibiotics. He also had a sore neck from the central line placement which contributed to some headachiness as well.

(See Ray's blog for more info on the transplant schedule and the transplant. raylyoung.com)

Days 1-7

The first few days after transplant he did pretty well even with occasional bouts with nausea. He started to be feverish in the early mornings but was up and about. He was still having occasional headaches which were hard to get under control, and upper respiratory symptoms--stuffy nose, cough, etc. They started him on major anti-rejection drugs, one of which they have been giving to him continuously through the IV 24/7 since day T-1 (Tacrolimus or Prograf).

These last few days the nausea has intensified as well as the headaches. He's had several fevers with last night's registering at 102. They're always concerned about infection since his immune system has been totally annihilated by the chemo and the anti-rejection drugs. It seems like every hour they are bringing in some IV med--anti-biotics, anti-fungals, anti-rejection drugs, anti-emetics (anti-nausea), analgesics (anti-pain), etc. (Just for fun I thought I'd list the meds he's getting regularly. You can skip over this part if you're bored.

Daptomycin, Amphotericin, Acyclovir, Tacrolimus, Methotrexate, Midrol, Murinol,

Compazine, Aloxi, Benadryl, Zygerid, Tamiflu, Ativan, Protonix, Actigall, Primaxin, Caspofungin, Potassium, Magnesium, Benadril)

I guess after receiving all those drugs, who wouldn't be nauseated.

Trying this out

I guess there's going to be a new blogger in town. Since my number one blogger is down for a little while, I thought I try to write a little to keep interested friends and family updated.

I apologize in advance. I'm not a desktop publisher or a computer wiz. So plain and simple is what you get.

Since I am in the medical field (I'm a Registered Nurse to be exact) you will probably get a little different twist on the transplant updates. As I've often told Ray, you can't take the nurse (or mom for that matter) out of me. I think I was born a nurse having a doctor for a father and a doctor's daughter for a mother. The mom part was instilled in me when I started, at age 9, helping out with my little brother, Mark. So there you have it.

Well, we're on an adventure so to speak, and it will be interesting to see where it leads us.

Thanks to so many for your love and concern.

P.S. My title is the nick-name my mom and dad gave me when I was tiny.