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.