Well, tomorrow Jim will have been gone from our presence for 4 months and we are 11 days until Christmas. It is definitely a hard time of year for us. We basically are taking it one day at a time. Some days are better than others. We are missing Jim more than ever but are overwhelmed by the love and good wishes of others. We are decorated, shopped and enjoying listening to Christmas music and feeling the sweet spirit associated with Christmas. We are basking in the memories of Christmas past when our Jim was with us. We know he is with us now but miss his presence greatly. We are sad Jim's sister Nedra and her son Michael are going to Cabo for Christmas. Ever since my kids have been little, Nedra and Michael and Jim's Mom would sleep over at our house and share Christmas with us. We always looked forward to it. Jim's mom passed several years ago and Nedra and Michael have decided traveling is more fun on Christmas so here we are. We will miss them. We discussed going to a snowy cabin or even going with Nedra to Cabo for Christmas but decided that it would be hard no matter where we were so we might as well stay home. There is a safety and a comfort being here. Our Nephew Allen and his wife will be staying overnight so that will be a fun bonus for Christmas. I think we might just make it through this season.

Today I am Thankful for those dear friends and loved ones that make us feel loved and ease our burdens. We are so grateful for those that boost us up when we feel down and give us the courage and strength to handle our hardships. It helps so much to know we are not alone and loved. We love you.

Brendan's First Big Dance: He went with Jessica to WSU's Homecoming Dance. How cute are they. They were nice enough to come by the house so Sarah and I could Ooooh and Ahhhhhhh and take pictures. Jim was smiling down I am sure.

It has been over 3 weeks since Jim's passing. It is weird, because to me it feels like it was just yesterday we lost him. I think we all have a protective mechanism in us that somehow makes us want to believe he is still alive. I know in my mind that he has passed to the other side but part of me still wants to believe he will still walk through the door. Not rational, but real. I have decided that grieving is not rational and that is ok. I have also noticed that my brain is not very sharp right now. I think it is using all of it's energy just to keep me going. I have had people ask me if we are more in a routine now or somehow more used to the idea. The answer is no. As much as we try to do the normal family activities there is a huge hole in our lives. I doubt very much that that hole will ever go away. Maybe we will just get used to it. Also, regular activities somehow lose their meaning when you lose that person you are so connected to.

People wonder how the children are doing. It is a hard question to answer because on the outside they seem like they are doing fine. They are tough cookies and have had to deal with a lot these past months. They go to school every day, are involved in various activities, do their homework, practice their lessons and go on with their routines. They are strong and stubborn like their Mom and Dad. I worry though that we are all just carrying on and then in about 6 months we are all going to crash. I guess that is ok though. There are no rules as to how we are supposed to work through this process.

One thing I have noticed though is that Jim's death has reinforced our bond as a family. We know that nothing is more important than being together again. We have felt Jim's influence over us. We are a united front. The kids and I have bonded more deeply and everyone has every one's back. I notice small miracles happen everyday. Spencer who used to not have alot of patience with Nathan is now going out of his way to make sure that he includes his younger brother in everything. He mentioned to Nathan the other day that he and Brendan were going to take Nate to Father's and Son's and how much fun they were going to have. That does a mother's heart good. I have also noticed miracles of myself having more patience with my children in ways that I did not have patience before. One of the kid's told me that when faced with decisions they hear Jim's voice (not literally) in their head guide them. I guess losing Jim has changed our perspective in alot of ways. The things that you thought were important before, the annoying habits, the imperfections all are just not as important in the big scheme of things. I know that is Jim watching over and influencing his family. Nothing is more important to him than his family.

Today I Am Thankful for Heavenly Father's Plan and that our family knows it and has faith in it. What a wonderful gift.

Tomorrow it will be 2 weeks since Jim's passing. The funeral services and graveside services were amazing and brought such peace to us. It was very hard to come home from St. George. The kid's and I just wanted to stay there. The house there is full of Jim. When he was first diagnosed with cancer and so sick he was more determined then ever to finish the basement in that house. He would sit in a chair and hammer or do the electric. It was like he was building this legacy for his kids. He was.

Monday, the 23rd was Jim's birthday. So, on our way out of town we stopped and got 48 balloons (Jim's age) and let them go at the cemetery. We watched the balloons go into the sky until we could see them no more. It was very cool.

People ask how we are doing and the only way I can describe it is that it is very strange. It is not like we are walking around crying all the time but actually more like we are robots. Everyone says we are so strong. It is not being strong, it is being numb. You know you are supposed to go on with your life. So you fill your life with mundane and meaningless tasks to stay busy and not give in to the grief that you know is imminent. It is also weird because you don't know who you are or what your role is anymore. When you lose that person that is such a huge part of your life, who you are and what your role is all changes. I took the kids to dinner last night thinking it was a Friday night and we should do something as a family. One kid talked continuously, one was angry and ornery and two sat and ate their dinner and said nothing. It was boring and not fun at all. I realized that Jim was the one that was always the center of everything. He was the one who brought the fun and excitement into everything. It is going to take all of us some time to figure out what we are supposed to do now. Someone told me yesterday that it took her 4 years after she lost her spouse before she thought that she was going to be ok. Someone mentioned a couple of times the other day about me being a "single mom" now. I kept cringing when I heard it. I thought, "I am not a single mom. I have a husband. My kids have a father." I keep telling my kids. We are going to take this one day at a time. It's all we can do.

When I thought about what I was thankful for, I thought, "I am thankful for nothing. Everything sucks." But, then I thought about all of the people who have carried me through the last 6 months and who are carrying me now. So, TODAY I AM THANKFUL FOR all those wonderful people who care for us, pray for us, grieve with us and love us.

Today I AM THANKFUL that I had 24 wonderful years with this amazing man.

Jim Still In The ICU

Jim is still in the ICU. His pneumonia is improving but he is still having graft vs. host symptoms, and is very week. While transferring him from the chair to the bed today he passed out. His blood pressure is dropping when he stands again but I think it is due to the amount of fluids that are being taken off during dialysis. It seams it is one extreme or the other. He is either fluid overloaded or dehydrated. They are doing dialysis daily though because they are trying to keep his lungs dry. He has mostly slept yesterday and today. He says he feels very tired and weak. He is still very mentally aware and in good spirits. Although he is weak, as soon as Physical Therapy comes in, he is doing what he can to walk down the hall. He knows he needs to do it to get stronger. Today the man is walking down the hall with a therapist on each side, me pushing the wheelchair behind (just in case), pushing his walker, shaking like crazy and turning white as a ghost as he is ready to pass out. He still would not stop until we made him sit down. He keeps trekking through. He would have made a great Pioneer.

Today my heart is full and my emotions close to the surface. My brother Dave's wife is having a baby boy as I blog. I can't help but think of the irony as one soul is fighting to come to this world, one is also fighting to stay here. I feel full of love for this man who under no circumstances is throwing in the towel. He is the epitome of what it means to be strong and courageous. He is a great example to all around him of being steadfast and faithful. I truly hope my new nephew will get the opportunity to know and love his amazing Uncle Jim.

Today I AM THANKFUL FOR another new fresh spirit coming to bless our family. We Love You Dave and Cindy.

Jim Update

Jim is still in the ICU but improving. They took out his breathing tube yesterday so he was very happy about that. He is just on an oxygen mask now. He will hopefully be transferred back up to the bonemarrow floor in a day or two.

Tomorrow puts Jim in the hospital 1 week. So to date Jim has spent 14 weeks in the hospital since the beginning of March. Yikes.

Now we just need to make sure he continues to not bleed and get his graft vs. host under control. The doctors have decided that the walnut size mass in his lungs is most likely fungus or mold. Jim's brother Bob is convinced it is just a hairball.

Despite Jim's weakness, he is doing the work in order to get stronger. He made two laps around the unit today. Go Jim Go. It is going to take some time to get him stronger. Spencer looked at his legs the other day and said "Dad, you have Barbie Legs." He does indeed.

Today I AM THANKFUL to see no breathing tube, Jim sitting in a chair and walking the unit. He is a "MANIMAL."

Back in the Hospital

We were home for a week and now we are back. Friday, Jim came back in for a flare-up of graft vs host disease (tummy symptoms). We thought it would be a quick fix. Early Saturday morning Jim was coughing up large amounts of blood. Good thing we were in the hospital. By Saturday afternoon Jim was moved to the ICU. Early Sunday morning Jim was intubated and placed on a ventilator. Poor guy. This is Jim's third pulmonary hemmorage and a reminder of his RSV days. He is stable and doing fine on the ventilator. We are hopeful that he will be extubated in the next couple of days.

This definately has been a rough 5 months. Even when Jim has been home it hasn't been great. To make this short, here are Jim's many issues right now.

Pulmonary Hemmorage - Keeping placelets high and on ventilator for support. Unknown as to why he keeps bleeding.

Unknown walnut shaped cavity in lungs - possibly fungus or mold - on medication to treat.

CMV in Lungs - Is on a trial medication for this

Kidney failuire - Dialysis at least 3 times a week. Special kidney diet. (Hopefully kidneys will recover)

Graft Vs. Host Disease - Several lesions in stomach, intestines, colon, etc - Increase in steroids to treat.

Congestive Heart Failure - Medications and special diet

Anti A blood- Jim's B+ blood still attacking Evan's A+ blood. Conversion still not complete. Just takes time, but causes alot of problems with blood breakdown. Needs blood products frequently.

Left Foot Drop - Cannot control his left foot. Makes it difficult to walk. Physical Therapy working with him.

Weakness - Physical Therapy working with him

Weight Loss - Lost 40 lbs during last 2 week hospital stay

I am sure there are more issues than I am remembering but these are the main ones. Despite how long the list and how bad it sounds, Jim is hanging in there. The staff on the bonemarrow floor call him the Energizer Bunny because he "takes a lickin and keeps on tickin." He just keeps on fighting. The ICU staff get nervous when he comes down because he has been here so much and gets so sick but I remind them that it is ok because Jim definately has nine lives. He has for sure used a few of them in the last 5 months, but he has some left.

Today I AM THANKFUL that Jim is such a tough cookie. He just takes whatever comes his way and keeps fighting the fight.

Jim Update

OK so here is the latest.

Jim got out of the hospital on July 4th. We had two good family gatherings and then Jim was back in the hospital 4 days later with another pulmonary hemorrhage and CMV in the lungs again. I actually think that he never really got better from the last episode but the medicine put it at bay enough to make him look and feel better. So, the doctors have decided that that medication was not working and now he is on a trial drug. He is currently in the ICU so that he can get breathing support, but he is doing much better from Thursday when he came in. At home he was going to get dialysis every other day, but here in the hospital they have been doing it every day. They are getting about 3 liters off him every day. He is also getting plasma exchange while he is here. Hopefully he will be able to go back up to the bonemarrow floor soon. As soon as he gets off of this by-pap machine (breathing support) he will be able to transfer back to bonemarrow. He was definitely hating life on Thursday, but today he is feeling much better and even joking with the nurses.

So, we don't know how long this hospitalization will be. We did figure out though that since his transplant hospitalization the first week in March he has spent 11 and 1/2 non consecutive in the hospital. Fun huh.

Today I AM THANKFUL he is doing better.

Still Here

Last night I went home and got much needed sleep. You could probably tell by last nights blog that I pretty much was at my end. Nedra (Jim's sister) came to spend the evening with Jim. She ended up spending the entire night because he was pretty anxious. I came back this morning and since I have been here, he has been sleeping really well. He got one dialysis treatment yesterday and is getting it again today as well. He tolerates it ok but it wipes him out. The dialysis people told me that 1 dialysis treatment is comparable to running a 5 k. They are planning on another treatment as well tomorrow. Run Jim Run!

As far as the blood attacking itself goes, they are going to do plasma exchange everyday for 5 days and hope this fixes the problem. The plasma exchange uses the same machine he used when he harvested his bone marrow. It takes his blood out, cleans it up and then puts it back. Too bad they don't have one machine that will do the dialysis and plasma exchange at the same time. Wouldn't that be nice. So, he is getting his blood pulled out and put back in twice today. They are just finishing up his dialysis now and then the plasma exchange people come.

The pneumonia in his lungs seems to be ok. They are treating it with IV drugs and he gets breathing treatments. He pretty much just uses a nasal cannula or a tent mask. So, hopefully we are doing ok there.

Today, I AM THANKFUL for great kids who are hanging in there and taking care of each other. I called the other night to check on them and they had been swimming all day and were b-b-qing at 10:00 at night. I thought that was hysterical. Hey, if that's what helps them cope, it is cool with me.

Have no idea what day post transplant it is or even what day it is for that matter.

So here is the scoop. CANCER SUCKS! Back in the hospital. Friday, Jim was feeling great, Saturday not so good, Sunday darn right crumby. Was having difficulty breathing. Called several times during the day on Saturday and was told only to bring him in if he had a fever. So, of course 11:00 Sunday night spiked a fever. I am terribly night blind so Spencer drove Jim and I to LDS hospital that night. No sleep Sunday night! So we thought he probably had some sort of infection (which he does) but found out on Monday that he had a Pulmonary Hemorrhage (bleeding in the lungs). We don't know which came first the infection or the hemorrhage. So, Monday afternoon after a lung biopsy Jim got to go back to his favorite place (not) the ICU. Keep in mind that the last time he was there he was on a ventilator for two weeks and nearly died. Needless to say he has Post Traumatic Stress from being there last time. So, Monday night neither of us got any sleep. Poor guy! He was so anxious! They decided to keep him another night in the ICU to watch him before sending him back up to the bone marrow floor. We got a little sleep last night. So, today we wake up and hear that he is in kidney failure. So Jim got another Central Line placed and dialysis. Jim is coping pretty well, but made a comment today something like "and this is going to be my life." We certainly hope not. We have been told the first year after transplant is hell (and it is). We just hope it gets better. We definitely have had some glimpses of better. I feel like it is a tease. He has a great few days and then the bottom falls out again. Last week was a glimpse of normal. I worked a couple of days, had a good couple of clinic days for Jim, planted some flowers, felt some normalcy. I even thought that I could leave Jim for an hour on Sunday and go to church. (I haven't been since February) Then here we go. The dialysis hopefully is just for a short time so they can get to the bottom of what is causing his kidney failure. They know some of his drugs are hard on his kidneys, but he can't go without the drugs as this point. So, anyway that is it in a nutshell.

I am planning on going home tonight and getting some sleep. Haven't been home since
Sunday.

Today I AM THANKFUL that I get to get the *@*%& out of this hospital. (Poor Jim doesn't get to go).

Day 96 Post Bone Marrow Transplant

OK, I know I suck at blogging. I guess you can figure no news is good news. Yes we are out of the hospital. It seams that most of Jim's problems were due to the digoxin toxicity. Within a few days after pulling him off the meds he got remarkably better and was discharged home. He is still weak but is able to get himself up and down much better and we have had "no passing out." That right there alone is huge. We are at the bone marrow clinic today for our weekly visit. He is getting 2 units of blood. I thought that might be the case as he was feeling a little under the weather the last few days. Yes, you do need blood. His labs are all looking better. His kidneys did take a hit during all this mess, so we are just watching them closely and seeing a kidney doctor. Also, his blood is still attacking itself so they are going to start Rituxin treatments to try and counteract this. If you remember, he received Rituxin treatments before to treat the lymphoma. His own lymphatic system did not like Rituxin before so we will see if Evan's lymphatic system likes it a little better. We can hope. So, now we get to come to LDS hospital 2 times a week. Still better than living here.

All in all, the process is slow, but as you can see we are approaching 100 days post transplant. That is a good place to be. It does not put Jim out of the woods, but clearly that is a milestone you want to reach. We finally are seeing some progress. Jim is able to come downstairs now and hangs out on the couch with his family. We are also able to have family dinner again which is huge to us. So, we keep hanging in there.

Today, I AM THANKFUL for progress.

82 Post Transplant - 2 weeks in hospital

Yes, we are still here. The last few days have been pretty frustrating. It seams as though Jim has been going down hill instead of getting better. He is a ton weaker than he was last week and his mental status has been diminished. The last couple of days I have been worried. We found out yesterday that one of his medications (Digoxin) was at toxic levels. About Double what it should be. It is such a serious thing that all health care professionals know about "Digoxin Toxicity." I don't know how long his levels have been this high but it is possible that many of the issues he has been having could be due to this. I am certain that the diminished mental capacity is due to the high level. The drug stays in your system for quite a while so now we wait to see what happens as his levels go down. Today I think he appears to be less shaky and his brain seams to be processing a little better. He was not so lethargic today and ate much better. So, hopefully that is the culprit and things will be getting better. For now, we just hang in there.

Today I AM THANKFUL FOR small improvements.

80 Days Post Transplant - Jim still in hospital

Yes, Jim is still here at the hospital. It appears that this so called "Tune Up" is turning out to be a little more like an overhaul. What the docs were thinking would be a few days is now almost 2 weeks. We still don't really have any answers. He totally swelled up the other day and they thought he had a clot around his IV line. It turns out that there was not a clot but the veins are just narrowing and collapsing because of all of the lines he has had. So, they removed that line and put another one in on the other side. The lines go directly to his heart and are lines that can stay in a while. When he was being fluid overloaded his blood pressure changes seem to have been better, but now that they have decreased the fluids he is still having the wild pressure swings along with the dizzy spells. The kidney specialists have looked at his kidneys and there is kidney damage but the docs think that they will heal themselves. Jim has been getting physical therapy every day but most of it is done in the bed because of his weakness and blood pressure changes. The CMV is gone in his blood but he is still having stomach pain. He again received 2 units of blood and platelets yesterday.

So basically IDK (I Don't Know) seams to be the answer for everything. Other than the blood conversion, we don't know why everything is so wacky. He is a mystery. I think that the docs think that all of this is just going to take time and hope allot will resolve itself. I have no idea how much longer he will be here. From my point of view he does not seem any better than he was two weeks ago. I am not saying that the hospitalization was a waste though. They have been able to run alot of tests to make sure vital organs are ok, they have been able to give him blood and platelets when needed and watch his labs. I just wish we could have a little more definitive answers. You know, the crystal ball would be good. So, we watch and wait.

I still have this lingering cold. One day I will feel ok and the next I will be back in bed. I was supposed to work on Friday and I called in sick because I spent the entire day in bed on Thursday. I was coughing up a lung and sounded terrible. Yesterday I felt lousy again. So, I did not come around Jim. Brendan came and spent the day with his Dad. I did however rally the kids together to do some long awaited yard work. One thing Jim always took alot of pride in was our yard. I am not saying it is anything special but he always kept it clean and well kept. This is a man who would get on his hands and knees and dig out the dandelions one at a time. Because of the weird season this year and Jim issues we have been slow to clean it up. Now I have to preface and say that I know that any of our Friends, neighbors, family or church members would have come and helped us. We already had friends trim our big oak trees and get our sprinklers going, but I wanted my kids to take pride in it. I am not teaching them anything if they watch everyone swoop in and do everything while they sit and watch TV. I had to say that because I know that some friends after reading this blog will get after me for not getting help. Anyway, the whole purpose of telling this is to tell you how proud of my kids I am. Yesterday we mowed, trimmed, fertilized, weeded, and prepared and planted a garden. The best part was that everyone worked together and it was done with very little attitude and bickering. Those of you with teenagers or kids at all know that that is a rare happening. As I was pulling away from the house today, I looked at my yard and thought how proud Jim will be of his kids. There was no hand removing dandelions but it is clean and done. Yea!

Today I AM THANKFUL that it is a beautiful sunny day.

75 Days Post Transplant - Jim still in Hospital

Friday night I stayed the night with Jim. On Saturday I realized I wasn't feeling so well. So, after realizing I had a cold I stayed away from the hospital for two days. That was brutal not to be able to come and be with him. Thankfully he had some family members and friends visit him so he wasn't completely alone. Truth be told he probably was glad to have a break from the task master that I am. So, today with mask on I am back. So first order of business, get that man a shower. As funny as that seams, when you don't have any strength or energy getting a shower can wipe you out for the day. Even simple things like eating a meal. He dreads eating because he knows it will take a whole hour to eat and then he is exhausted. He is definitely getting some strength back though.

So, here is where we are at. Blood is still trying to convert. The cardiologists have looked at his heart and the heart looks good. I always knew he had a good heart. (Ha Ha). Kidneys are still having issues so those specialists are looking into that. They have pumped him full of fluids which have made him swollen but still are not getting to the kidneys. Blood pressure is doing better. He is not having the dizzy and fainting spells as much. The steroids have wasted much of his muscle tone, so he is still very weak. So pretty much the doctors think that this is still all related to the blood conversion {or lack of } medications and the CMV virus. They are pretty much giving him the support he needs to get through this. He has received multiple blood transfusions since he has been here. Also physical therapy is working with him to build his strength back up. Surprisingly enough he is still maintaining his good spirits most of the time. I don't think he is too depressed or frustrated. He still has hope in the process and knows that this is just one more hurdle he needs to get past. We don't believe that any of these issues are life threatening at this time, so that is good. We still don't know how long Jim will be here in the hospital. I know they want to have a handle on everything and make sure all of his major organs are ok before they send him home. It is possible he could be home as early as the end of this week. I hope but I also don't want them to send him home too soon and a mess. So, we will see what happens.

The kids are doing fine. This is the last week of school. Yea! I love it when my kids are home. Things are definitely more chaotic with them home all day but there is also that since of carefreeness (if that is even a word) that comes with summer. We lose all structure at our house. I think that is what summer is about. For me that is probably good, because I am a very OCD structure loving freak of a person. It helps me relax and let go a little. I have to say that by the end of the summer I always hate to see my kids go back to school but ready for structure in my life again. I guess it is all about balance.

Today, I AM THANKFUL that I can get back to being with my sweetheart.

Day 70 Post Transplant

Well, Tuesdays appointment did not go so well. I was able to help Jim down both flights of stairs at home and he did pretty well. When we got to the clinic they told us that he needed two units of blood again and also platelets. They decided because of all of the unresolved things going on that it would be best to hospitalize him and give him a "tune up." There are just a bunch of little things going on. Here are the issues, blood pressure issues (up and down all day), passing out several times a day, high blood sugars, weakness, CMV (virus in gut) and basically all of his labs are in the toilet. The doctors think that alot may be medication related and his CMV virus causing alot of this. They are also very concerned about safety. His platelets have been so low and with him so scary on his feet that if he fell he could bleed to death. So, right now they are changing some medications, monitoring his labs, managing is blood sugars, intensely looking at his heart function, and making sure his kidney and liver functions are ok. He also is getting blood and platelets when he needs it. They are also going to give him some intense physical therapy. We are thinking that this will be a short stay. Although I am sad he is not home, it is actually a relief for me. I have been feeling like his health was spinning out of control and that he was not making any progress. I was pulling my hair out to try and figure out what to do to fix him. Obviously I am not a doctor and do not have a lab in my house. So, this is good. I do have to do the hospital commute, but I actually have been able to get a few good nights of sleep which was something I didn't get when he was home. So, hopefully they can fix this stuff and get him home soon so he can progress.

Today I AM THANKFUL that school is almost out. Tuesday after we admitted Jim I went to Nates Shakespeare, Wednesday Sarah's Spartones concert and tonight more Shakespeare. Whoo Hooo! I Love my Kids.

Day 67 Post Transplant

This last week has been a challenge. Last Tuesday we went to the clinic and it was a very rough day. We woke up in the morning and Jim kept passing out. He was so week, I kid you not, 4 people (2 men and 2 women)had to carry him to the car. Realize that means an indoor flight of stairs and an outdoor flight of stairs. Jim is a large man so that was a chore. When we got to LDS Bonemarrow clinic, they almost admitted him. His blood counts were very off and his platelets were dangerously low. He got 2 units of blood and platelets. The MD thinks that because his brothers blood type is A+ and Jim's was b+ that Jim's blood is trying to convert over. Apparently he is 90% converted but there is a part of Jim's B+ blood that is attacking the A+ blood. This is not a rejection of the transplant but just a hurdle to get through. Also the medicine that they are giving him for the CMV infection is depleting his platelets. Also his white count is low. So, Wednesday he felt a little better now that he had some blood. We are just watching him very closely now and went to the hospital for blood draws on Thursday and Sunday. He needed a white blood count stimulator (shot) on Thursday and Sunday. On Sunday his platelets were even lower than on Tuesday and he needed more platelets. Today he feels pretty bad again so I am expecting that he will need more blood tomorrow. Hopefully we can forgo the carrying to the car part. The MD told Jim that he is a work in progress. She told him that this will be a tough time, but they will get him through it. I think on these transplants they are used to things coming up and just putting out fires as they come.

On Sunday Sarah had a talk in church, Nate was being introduced for graduating from primary and I couldn't go to church because I had to take Jim to the hospital for a blood draw. These kids are troopers. I heard Sarah's talk was fabulous. I told the kids I was so proud of them doing all of these things even when their parents can't come. Spencer said "Parents, we have parents?" It definitely is taking a village right now to raise my kids. Sunday afternoon the bishop came over and Jim sat at the side of the bed and ordained Nathan a deacon. It took all of his strength to sit there and place his hands on Nathan's head but it was a very special experience.

Tomorrow, we have a clinic appointment at LDS Hospital so we will see where we are at.

Today, I AM THANKFUL FOR special friends that I can call and say "Help me carry my large husband to the car, or friends that come running when I say "I am having a melt down" or friends that show up with dinner when we are delayed at the clinic until 8:30 at night. We don't even have to ask. Most of the time I don't even know what we need. So it is nice when friends and family are in tune enough to know what we need before I even know we need it. (Does that even make sense?) Love you guys!

60 Days Post Bonemarrow Transplant

Things are pretty much still the same. Jim has been home 1 month tomorrow and we don't see a lot of progress. Jim mostly remains in our room. He has been down to our family room twice since he has been home. He generally feels pretty crappy. We continue to go to the clinic at LDS Hospital once or twice a week. That is a huge ordeal because his mobility and energy is very limited. It takes at least 15-20 minutes to get him from our room and down the stairs to the car. Once we get to the hospital it is quite a comical routine. I drive to the front, run in and get a wheelchair, help him into it, wheel him to the lobby, go back out to the car, park it across the street, walk back across the street, then we are off to his many appointments. You don't realize what people go through that are mobility challenged, handicapped or as my son Brendan puts it handicapable. Its not very convenient and things take twice as long. At one of our appointments last week Jim needed to use the rest room. It was not a standard appointment so we were not aware of the facilities. We were directed to the hall. Keep in mind Jim is in a wheelchair. We can not find a handicap accessible restroom. We see a men's room and a women's restroom. What to do, what to do. Well, I do what needs to happen. I enter the men's restroom with my husband. We take care of business and I am just happy no one has come in. Just as I am wheeling him to the sink to wash his hands, a man walks in. I apologize and explain that we are just finishing. The man is friendly and states "no problem." He then proceeds to the urinal and relieves himself right in front of me. At that point I know I have hit the bottom. Funny!

We found out last week that Jim has a virus that has reactivated. About 80% of people have CMV virus in their blood. It is not a problem with a healthy immune system. Jim and his brother who gave the stem cells both had it dormant in their blood. Now because he is on steroids for the graft vs host, the CMV has activated. He has it in his blood and in his gut. So that could also be contributing to alot of his issues.

We wheeled into the clinic last week and helped Jim into a chair. He has to wear a filtration mask so it is obvious he has had a transplant. There is a brother/sisterhood at the clinic. A woman was sitting in a chair. No mask but obvious her hair was not fully in. She asked Jim how far out of transplant he was and he stated 50 something days. She watched him struggle from the wheelchair to the regular chair. It is pretty rough on him. She stated that she was a year and a half out. She looks at Jim and says "Can I just tell you, the first year just sucks." It actually was good to hear because it took the pressure off. Jim was frustrated that he had been home 3 weeks but did not feel any progress. So now we just know, it is a very sloooooooooooow process.

We made it through mine, Sarah's and Nates birthdays. Also through Mother's day. I have not been back to work yet, but I have a shift scheduled for Friday. Jim's sister Nedra is going to come and take care of Jim. I am nervous to leave him. I know Nedra will do fine, I am just used to taking care of him. I know it will be good for me to work a shift once a week though.

Today I AM THANKFUL FOR continued health and mental strength to carry on. I asked Jim what he was thankful for and he also agreed that he was thankful for my mental health.

45 Days Post Transplant

We are still hanging in there. Jim said today that he has been home for almost 2 weeks. He is frustrated because he does not feel any better than he did in the hospital. He is still having blood pressure issues and likes to try to pass out alot. Physical Therapy comes 2 times a week. The clinic visit on Tuesday went fine. The pulmonologist met with Jim to follow-up on his RSV. Jim was telling him how weak he was. The Pulmonologist said "Jim, did I tell you that most bonemarrow patients that get RSV are dead?" He is a funny man and reminds us this every time he sees Jim. I think he is in awe that Jim made it through the RSV. He told us that 80% of bonemarrow patients that get RSV die. It is a good reminder because it puts things into perspective. I think he is pretty much saying "chill, you are alive." I just wish Jim could see some progress. He still just feels lousy. Some days he can walk down the hall a couple of times and some days all he can do is use the bathroom and brush his teeth. Obviously he is weak because of the transplant and RSV but the steroids I guess can make it worse. I know some of the meds must be contributing to the weakness and how he feels but how do you know which of the 25 different prescriptions are doing it? Plus he needs all the meds to stay alive right now. So, I guess that is how we look at it. Progress is being alive. He occasionally will have a moment where he feels ok. He calls that "when all the planets are aligned."

My life right now is pretty much taking care of Jim. I have not been to work for 2 months. I actually have a shift scheduled in two weeks and I am actually looking forward to it. I am able to accomplish things at home but cannot leave him alone. That can make me a little stir crazy. Friday night a friend arranged a "girls night" and one of the husbands had a "boys night" with Jim. We saw a chick flick and got ice cream and it is amazing how renewing that can be. Just getting out and having a little girl talk was great. Jim's "boys night" consisted of watching the Jazz game together while Jim layed in bed. Jim loved it. I am sure he is pretty sick of me. He feels like crap and I am the one telling him "do your leg exercises or you won't get stronger, drink more water or I will have to give you more IV fluids, it's time to take a shower, you need to walk more, are you dizzy, take your pills, are you ok, don't get up alone, no you can't lay in bed, you have to sit in your chair, are you passing out again and etc." I joked with him yesterday that he was going to divorce me when all of this was done. He didn't think it was as funny as I did.

The kids are also pitching in. I can't leave Sarah and Nate totally alone with Jim in case he falls or something but they will sit with him. Sarah is also getting proficient in giving IV medication. She has for as long as I can remember wanted to be a veterinarian. She is very interested in Medicine. So, anytime I have something medical she might like, I teach her. She is not squeamish at all. A few months ago she removed the staples from Brendans head after I showed her. Now she knows how to hook up Jim's IV meds, flush the lines and do line care. It is nice because when I went to the movie I started an IV medication and while I was gone she stopped it and flushed the line. She is only 13, but I trust her way more with this kind of stuff then I do the boys. I think it is good for the kids to do some of this kind of stuff for Jim because it keeps them close with him. They can't do the same kind of bonding activities that they did before with him because of his limitations. Sarah and I both have a birthday coming up and the only thing we wanted was to have a day together. So Saturday, Spencer is going to have a bonding day with his dad. I didn't want it to be a negative thing for Spencer like he was stuck home "babysitting" his dad. I don't want the kids to feel like their dad is a burden. Spencer was very cute about it when I asked him. I told him it was a Father and Son" day and I would get whatever food they wanted. Spencer was in our room this morning and told Jim that they "get" to hang out together on Saturday and that he was going to bring up the Play Station so they could play Crash Team Racing together. I know that Jim was happy that Spencer acted like he wanted to spend his Saturday with Jim rather than dreading it. It will be good for them. The kids all are finding their own way in regards to their Dad. They all handle it different. Some of them won't leave him alone and some avoid him completely because they are afraid they will contaminate him somehow and kill him. Some talk his ears off and some sit quietly beside him doing homework. Others simply drop by the room and provide the necessary care. No matter how they act or what they do though, it is obvious they all adore their dad.

Today I AM THANKFUL FOR the bright moments that touch my heart and make everything worth it.

Day 39 Post Transplant

We are getting the hang of Jim being home. I can't believe how tired I have been. I think my body thinks it is time to crash. I have been pretty stressed out staying home with Jim. I have been trying to figure out what is so stressful. Before I was going to the hospital every day and not getting anything else done. It is not like he requires that much care. I have decided that the stress is just change. When he was in the hospital I was just there for him. Now I am responsible for his care 100% of the time. I think some of the stress just comes from knowing that. I am also a very structured and organized person. When Jim was in the hospital I just had to go with the flow. There was no structure. Now that I am home, I think I am craving some kind of routine. I am not good at chaos. It is getting better though. Today I woke up with energy and motivation to do some things. I just have to keep telling myself that my role is to take care of him and whatever else I get done is bonus. That helps. The more he is home the more it is coming together.

Jim has some good days and some bad ones. Yesterday he felt pretty good. He still pretty much just showers and then spends the day sitting in the lazy boy. When he gets up to use the bathroom he will take an upstairs tour to build his strength back up. Today I am giving him extra IV fluids because he is feeling dizzy again. He is drinking, but can't seem to stay hydrated.

Tomorrow we have his appointment at the bonemarrow clinic. It always seams to be an all day affair based on his labs and what he needs that day. Hopefully we will only have 2 appointments this week. It actually might feel good to take a drive and get out of the house. He will also have physical therapy 2 days this week.

Today WE ARE THANKFUL FOR incredible support. I don't think we could have ever done this without it.

Day 36 Post Transplant

WHAT A WELCOME!






WELCOME HOME DAD!



We came home Tuesday night. The driveway was lined with flags and there was a Welcome Home sign on the garage and the front door was decorated. When I left the house Tuesday morning to go to the hospital the flags were out, but no signs. I knew someone not following the blog would think that Jim had passed away. Sure enough, later several neighbors told me that they had received calls from other neighbors inquiring about Jim. He is a loved man, that is for sure.

Wednesday was pretty hectic. We had to have home health come out and deliver supplies and give us info. It was a "figure out day" for both Jim and me. Jim had to figure out how to get to the toilet, how to get up from the toilet, how to adjust to a house full of loud teenagers and how to walk without falling down. I however had to figure out how to get Jim to the toilet, how to get Jim up from the toilet, (sorry for the toilet humor) how to keep Jim from falling down (pushing him face first on the bed works) and how to manage 26 prescription medications. Both of us pretty much have not been home for 6 weeks so it will take some adjusting.

Thursday, Jim had to go to the bonemarrow clinic at LDS Hospital. He will have to go 2-3 times a week for a while. Our appointment was at 9:40 which means we needed to leave around 8:40. Jim is still very weak so things take a long time. By the time he ate, walked to the bathroom, showered and dressed he was done for the day. However, we still had to get him down our inside and outside stairs, drive to the clinic and get inside. I was a little nervous about that considering his weakness, lightheadedness and the fact he had already almost passed out that morning and almost fell the night before (thus getting pushed face first into the bed). Our good friend Todd came and helped me get Jim to the car. A very sloooooooow process. When we got to LDS Hospital, Jim tried to walk from the front entrance and almost passed out again. We got a wheelchair to get him inside. Once inside, he was insisting he should walk and then almost passed out again getting to the elevator. So, bottom line, Jim's blood pressure was 64/49, thus the almost passing out. They did not have me checking blood pressures at home, so I was not aware of his low pressures. They gave him 2 Liters of fluid and adjusted his blood pressure medicine. We got home yesterday about 5:00. Another very long day.

Today went a little smoother. Needless to say, now I am checking Jim's blood pressure quite frequently. I am also giving him IV fluids and IV magnesium at home. We have our own little medical clinic going here. The fluids are starting to help the dizziness. Physical Therapy came today and Jim walked around a little bit inside the house. He toured the hall and Nathan's bedroom and our bedroom. We probably won't tackle the stairs again until our next clinic appointment on Tuesday. Hopefully by then he will be a little stronger and not so dizzy. It seams like slow progress for Jim, but I am just happy he is moving forward considering he was just "circling the drain" as one nurse put it just 2 weeks ago.

So as I am sitting here blogging, I am talking out loud. Believe it or not, Jim has not been a sproulsprout's blog follower. But, as he hears me blogging out loud he seams to think it very important that I tell you that now he has figured the toilet thing out by himself. He actually had no choice, because the other night I was apparently pretty tired, dropped him off at the toilet and told him to call me when finished. Apparently I was pretty sound asleep. He called and no answer several times. He decided that now was the time as good as any to go SOLO. It's a good thing too or he would still be there.

So, anyway sorry about all of the toilet talk but by now I would think you would be used to it.

Today I AM THANKFUL that Jim can get up from the toilet. Hallelujah.


SCARY JIM IN THE ICU. HOW FAR WE HAVE COME. PS. THE FOLLOWING PICTURE IS NOT FOR THE SQUEAMISH. SCROLL DOWN AT YOUR OWN RISK. HARD TO BELIEVE HE LOOKED THIS BAD. HE CAN'T EVEN STAND TO LOOK AT IT.

Day 33 Post Transplant - 42 Days in Hospital - Going Home!

GOING HOME TODAY! YEA! I'll keep you posted.

Today I AM THANKFUL FOR HOMECOMINGS!

Day 29 Post Transplant - 38 days in hospital

We are doing well. Jim is getting stronger every day. They put him on steroids for his graft vs. host disease and that seams to have also increased his energy. He actually ate 650 calories yesterday and was up walking twice. If all continues to go well I think we will be able to get him home this next week. He will be on home health and have physical therapy and need to go to the clinic three times a week but none the less, he will be home. Yea! Keep your fingers crossed.

The kids and I are busy in the evenings getting the house ready for Jim. Because he will be immunocompromised for quite some time, we are cleaning, painting, changing filters and even are getting new carpet. (Good excuse for new carpet, huh?} I just couldn't see cleaning that deep but bringing him home to 20 year old carpet. That had got to be harboring some yucky stuff. So, we will be spic and span around here. The doctors told us just to plan on some hospitalizations after for various infections, but we want to prevent as much as we can. Last transplant I went through Lysol like I go through milk. Time to stock up again.

Today I AM THANKFUL FOR my good health and energy to carry out all of this preparation.

Day 26 Post Transplant - 35 Days in Hospital

Quick Update:

Jim is doing well. Blood counts are good. He is still pretty weak since he spent 2 weeks in bed in the ICU. Physical Therapy is starting to work pretty hard with him so we can get him home. He is not eating well at all. He has no appetite and has some stomach issues. They are not sure if it is medication related or Graft Vs. Host Disease. They start him tomorrow on the Marijuana pills again hoping that they will stimulate his appetite. It worked before so we will see. Bottom line, before he comes home he needs to (1) Be stronger and more active (2) Be eating and tolerating food (3)Have stomach issues (? Graft vs. Host}resolved or treated. These sound like they could take a while but I notice an increase in energy each day. I don't think we will get him home this week, but I would not be surprised if he gets to come home next week. Anyway, I am not frustrated because He is alive and I see progress each day. It may be baby steps but as long as we are moving forward I am good.

Today I AM THANKFUL that I finally got my Suburban out of the shop. Yea!

Day 23 Post Transplant - 32 Days in Hopital

Jim is still doing well. Got here today and he was just snoozing with conference playing on his TV. He is still pretty tired but we try to get him up a couple of times a day so that we can help him increase his strength.

It is very strange for our family this weekend. For at least the last 10 years we have headed to St. George for Easter weekend. It has always been a wonderful family time for us to enjoy being together and enjoy the outdoors. This was Jim's family home since he was 16 so it is rich with memories and heritage. It is always wonderful to go there because it feels like home away from home. So we feel a great loss not being down there this weekend. I guess it just feels strange anyway with Jim in the Hospital and no real plans. I guess our plans are to get him better and get him home soon.

Today I Am Thankful for spring flowers popping up everywhere reminding me that there are new beginnings.

Day 22 Post Transplant - 31 days in Hospital

Jim is back up on the bonemarrow floor and doing well. He is still very weak and tired but other than that, everything looks pretty good. He is obviously still recovering from his respiratory illness. The doctors told me that his counts look great and if he hadn't gotten RSV he would be home by now. They said it is possible he could go home this next week. The plan now is to get him eating and watch for graft vs. host. So, hopefully no more surprises and he can get out of here.


YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA YEA

Day 20 Post Transplant - 29 days in Hospital

HALLELUJAH! HALLELUJAH! Tube is out and Jim can speak. He sounds like a 2 pack a day smoker but regardless he can speak. Yesterday when they pulled it out the first thing he did was take a deep breath and say "Ahhhhhh." It was a sigh of relief. He was like a little kid just learning he could talk and kept trying things with his voice, just because he could. One of the first things he said was "you have alot of control when you can speak." Amazing the things we take for granted. Now he just has a mask with O2 and moist air going in.

Today, Jim has been cruising around the unit. Getting the tube out really gave him a boost in his spirits and some hope of getting better. He is much more lucid now. He said today that the whole experience has been strange because he can only remember some things and he said the whole time he wasn't sure what was reality and what wasn't. He has memories of things that didn't happen and no memory of things that did happen. I asked him if he was more clear headed today and he said "yeah, I was Wacko." (Couldn't agree More!)

The doctors told us today that if Jim continues to make progress, he will be back up on the bonemarrow unit tomorrow. Yea! That was great to hear. A week ago, I did not expect that I would ever hear that.

Speech Therapy will come up today and do a swallow test. After having a tube in your throat for two weeks, your swallow reflex doesn't work very well. So, now he just uses the spit sucker to clear his mouth. Once he can swallow they will begin to let him have some things like water or ice chips. He asked me today how long it has been since he last ate. He said he feels hungry. I told him it had been almost three weeks. I can't imagine going three weeks without eating. He really did not lose any weight though because he gained so much in water weight.

Well, I am a firm believer in Miracles. I have no doubt that this is one. I think that Jim must have more to do on this earth. I kept telling God last week that Jim surely could be more useful here than with him. Maybe I convinced him. (Ha Ha). Regardless of the reason, I am so glad he is still here with me.

Today I AM THANKFUL FOR the opportunity to hear my dear Jim's voice again.

Day 19 Post transplant - 28 days in hospital

Today is a much better day. The ICU doctor told Jim yesterday if he would walk around the unit once (with a walker) he would take out Jim's breathing tube. Today, Jim walked around the unit and waved while walking past the room the doctors were having rounds in. He wanted to make sure they all saw him. So, the tube gets to come out. They are doing a scope (roter rooter)first and then he will walk again at 4:00 and then the tube comes out. It's a little scary because he still is sick and has alot of secretions. I don't want him to have to be reintubated, but I think it will be a nice motivator for Jim. Also, then he won't have to be restrained anymore. He will be able to scratch his own itches.

Labs all look pretty good. In terms of the bonemarrow transplant he is doing well. The doctors suspect he is having a little bit of graft vs. host disease. They scoped him today so that they could rule out an infection causing his stomach distress. A little bit of graft vs. host is not a bad thing. It will actually attack any lymphoma left in his system. But, if he has a flare up of graft vs. host they will have to treat it with steroids. It is very hard to wean bone marrow patients off of the steroids once they are on. He is still being fed through the IV. Yesterday, he wrote on a piece of paper wanting to know when he could have a cookie. Poor guy, hasn't had a drink or even an ice chip in 2 weeks.

Jim is less confused today. He seems to be a little more clear. I don't know exactly what has been causing the confusion. I think it is probably a mix of sickness, medication, sleep deprivation and a little chemo/radiation brain. I am glad to see him clearing. I was getting a little nervous. I am starting to see more and more of "My Jim" and less of "Strange Jim." Don't get me wrong, I would take "Strange Jim" but I have really missed "My Jim." You think it would be nice just to be able to talk to your spouse, have them listen and not be able to give you any guff, but I have really missed the sound of his voice. A couple of times I have called his cell phone even though I knew it was turned off, just to hear the sound of his voice. I can't wait! Yea!

Today I AM THANKFUL FOR progress! Yea!

Day # 17 Post transplant - 26 days in Hospital

Today we are doing well. Slept here last night. Jim had a bronchoscopy this morning to check and make sure his breathing tube was not blocked. They put in a little smaller tube while they were in there. So, he has been pretty drugged up today. It will probably take him a few days to wean him off of the ventilator. He has been having a few belly issues due to the stimulating of the bone marrow so soon and the tube feedings. So, they just kind of watch and wait on those issues. Overall, things are looking decent. I am really getting impatient about getting back up on the bonemarrow floor. ICU really hasn't been my favorite place. I guess it isn't anyone's favorite place. Tuesday, Jim will have been in the hospital for 4 weeks. Two of those weeks have been in ICU. I look forward to him getting stronger and coming home.

Today I AM THANKFUL FOR Hope in the future. Hope gets us through the current days that are not quite so fun.

Day #16 Post Transplant - 25 days in Hospital

Today was a Great Day! Jim finished his RSV treatments - Yea! My mom came to the Hospital this morning to sit with Jim while I helped Sarah get ready for Violin Federation. We picked my mom up at the hospital and headed to the U of U. Sarah did a great job. She was worried about performing today because violin has not really been her focus the last couple of weeks (Hmmm I wonder why). She has still been practicing but just didn't know if the focus was there. I really wanted her to still try though because she has worked so hard. She did a great job and got a superior.

After, we came to the hospital. Sarah and Nate got to see their dad. Nate hadn't seen him since the breathing tube was placed so I didn't know how he would react. He told me "you know, it's not too bad." I think they were both just so happy to see him. I also think that they see beyond the tubes and swelling and just see their Dad. It was great for him. I haven't seen him so alert and smiley for a while. We had recorded Sarah's performance and loaded it on the computer. He watched it twice in a row. He was so proud of her.

Jim seams better today to me. Of course now he is off all of the sedating drugs now that the RSV treatments are done. So now he actually opens his eyes and wants to engage a little. He actually put his glasses on so he could see today. It is so nice to see him alert. He is still weak but I can tell a little stronger than yesterday. Now we are just focusing on getting him stronger and weaning him from the ventilator. It could take a few days. I am anxious because I would like to see him get back up to the bonemarrow floor soon.

Today I AM THANKFUL FOR a beautiful daughter who pushes herself and endures. She is also sweet, faithful, kind, funny, brave, stubborn, smart, friendly and best of all mine.

Day 15 Post Transplant - 24 days in Hospital

I was able to go home last night. Yea! Jim's dear friend Ben came and stayed with him. Jim rested well and was doing well when I came this morning. He is having really high blood pressure again though, so they are having to deal with that. His brother Don and his wife Jane came for a visit today. They live in Kentucky so that was a nice treat. Jim still pretty much sleeps through his visitors. I know that he hears what is going on and occasionally will smile and grin. I think it just takes too much energy to open his eyes and try to communicate for now. He is getting a treatment right now. He is almost done with them. I am not sure if he has 2 or 3 left but we will for sure be done tomorrow. After that, we start to wean him from the ventilator. That could take a couple of days. I am hoping we can be back up on the bonemarrow floor this next week.

Tomorrow, Sarah performs a violin piece at Violin Federation. She has Violin Federation every March. The students get judged and can earn trophy's. She has worked so hard, so I hope she can focus and be able to play. Usually Jim practices with her alot. He worked with her before he went in the hospital. It is a big deal because they work for months perfecting a song. So, hopefully despite goings on in our life she will be able to do well.

Spencer is going to Prom tonight at Roy High School with a cute friend of his. I am so out of the loop, I don't even know what he is wearing. I reminded him about flowers yesterday. Of course he had forgotten, but when I got home last night he had called his friend Blake's mom and she said she would take care of it. I am so lucky that my kids have people that will be their Mommy when their Mommy is taking care of their Daddy. Thank you so much guys! I am so impressed with your love and service.

Today I AM THANKFUL FOR only a few more RSV treatments. Yea!

Day 14 Post transplant - 23 days in Hospital

After reading yesterdays blog, I realize I sounded pretty witchy. I guess just a little protective of my man. Last night went much better. Jim slept through the night pretty good. I had to leave the room for his 10 pm treatment and 6:00 AM treatment. He tolerated them much better with less anxiety.

Jim's brother Bob came to visit Jim yesterday. I feel bad for Bob though because Jim has seen better days. Yesterday was a rough day because of his adventures the night before. He was exhausted yesterday, drugged up and then they tried to drag him down the hall. He did it, but didn't tolerate it too well. That was way too much activity for him.

Today, He is less drugged up, still tired and stood at the bedside and sat in a chair. He is still confused at times. After his 10 pm treatment tonight, he only has 5 more left Yea! Then we look at ventilator removal. Yea Again! Then he will be able to talk to me. Yea! but then again, maybe not yea! After his little outburst the other night I may not want to hear what he has to say. Just Kidding! Bren talked to him on the speaker phone today. Bren told him he heard that Jim had ripped out his tubes. He told Jim that he thought that was pretty "Bad A" and Jim just grinned. Bren said "a little temper tantrum huh dad?" He grinned again and was pretty proud of himself. That's my boy. Still has that fight in him. Just letting us know he still has a voice in all of this. I asked him the other day if he felt like he had any choices anymore. He made a frown and said no. I told him that this is all about his choice. His choice was to fight and all of this other stuff is part of the fight. I said "you didn't think it was going to be this hard though did you? He shook his head. I think when he finishes the treatment and gets the tubes out and sees some progress, he will start to feel better about things. Right now I am sure he just feels stuck. He only sees what he can't do or needs help to do. I just need to keep reminding him that he is fighting for me and the kids. I keep telling him to "keep his eye on the prize." I am sure right now he just looks at me and thinks "you are sooooooo not worth THIS." Ha Ha.

Today I AM THANKFUL that he will probably forget all of this time he has spent in the ICU. (One can hope.)

Day 13 Post Transplant - 22 days in Hospital

Woke up at 2:00 AM and was wide awake. I thought that I would call Jim's sister Nedra who was sitting with Jim. He had his treatment at 10:00 so I knew she would have just been getting back into his room. So, my ears must have been burning because she was debating on whether she should call me. Yesterday I blogged that he was fed up. Well apparently after treatment and before she got in the room, they did not restrain his hands. He had had enough and decided to pull out his breathing tube and feeding tube. So, when she got there they were putting them back in him. This is a big deal because they inflate a balloon at the end so the tubes stay in. Pulling the breathing tube out could have caused much damage. I was very worried about bleeding (because platelets are low) and very worried about damage especially to his vocal chords. They knew right away that his vocal chords were ok because he was screaming at them and demanding they call his wife. Apparently he did not think they were giving him good enough care. We are lucky because there does not appear to be any damage and bleeding was minimal. Nedra said after that he was very agitated and did not sleep any more than 20 minutes. Poor Nedra!

Since I have been here at 9:00 he has done nothing but sleep. Magic! Give him something for his anxiety, put his ventilator settings to help him be comfortable and he will be an angel. I think the staff has been too caught up in ICU protocols and trying to wean him from the ventilator or his anxiety medicine. But, they forget he is a bonemarrow pt and has to breathe through a straw for 2 hours 3 x a day. It is exhausting for him to just exist right now.

So, I am going to rounds today and I think the staff is going to get a "come to Jesus" talk. The bonemarrow doctors were not happy at all and asked me to come. Up on the bonemarrow floor they give you whatever you need to be comfortable, but in the ICU if he says he can't breath they tell him he can it just doesn't feel like it. So, my priority is to convince them that they need to not worry about the protocols but give him "whatever" he needs so that he can get through these 3 more days of treatment. He is not a "protocol" case anyway. If he was agitated enough to pull out his tubes, they are not doing their jobs. Now they are not getting rid of his wife at all. Pity for them. It is interesting, sometimes I think that Jim did not always appreciate my feisty side, but now I know that he not only appreciates it but relies on it. He holds onto me and relies on me like I am his lifeline. I can't imagine how helpless he must feel. He is pretty mad at me though. I think he feels like I abandoned him last night. I told him if I could forgive him for scaring me to death this week, he could forgive me for going home. He smiled.

So, just got back from the meeting. The ICU staff did agree to take Jim off of "Ventilator Protocol" and increase his meds for anxiety. I found out that the tube he pulled out was pretty clogged with the RSV medicine, so it was probably a good idea he pulled it. Also, they are looking into giving him the treatment via pill or IV now that he has had several days worth of treatment. He gets another treatment at 2:00 and has 9 more after that. I really hope that he can get the medicine another way. Then they can begin to wean him off of the ventilator. The bonemarrow doctor told me he is doing so good bonemarrow wise that if he didn't have the RSV he would have been going home.

Jim's brother Bob who has been in Spain on a mission came home last night. He is on his way here to surprise Jim. That will be a fun surprise.

Today I AM THANKFUL FOR a connection with my husband and Heavenly Father that allows me to wake up at 2:00 in the morning when he is in distress. (At least I think I am thankful for that).

Day 12 Post Transplant -21 days in Hospital

Still on the upswing. When I got here to the hospital Jim was pretty ticked. He got a feeding tube today to better regulate his medicine. Our boy is back because he is fed up. I don't blame him and that is perfectly ok as long as he keeps fighting. He has 12 more RSV treatments to go. He gets 3 a day so he should be done on Saturday. After that they will wean him from the ventilator. So, I am hoping if all goes well he can be back up to the bonemarrow floor next week.

The treatments cause him much anxiety so he lays there watching the clock. Poor Guy. They can give him meds to help with the anxiety, but they won't sedate him. He has started writing his needs on a pad of paper. I am saving the sheets to show him later because it looks like something a second grader has written. Pretty cute. His sister is staying with him tonight and my Dad will go in the morning so he doesn't have to be alone. He doesn't like me to go and boy does he lay on the guilt trip. My only saving grace is that he most likely will forget everything that has happened in the ICU. I hope he does anyway.

One thing that makes him happy is hearing his kids talk to him on the speaker phone. I keep telling him to keep his eye on the prize. He listens to their voices intently and beams.

Today I AM THANKFUL FOR people who sit with my husband so I can sleep, friends who deliver groceries to my kids, friends who bring food and friends that show up at my house who clean and do laundry. I am in awe. Boy do I owe alot of service when this thing is all through.

Day #11 Post Transplant (20 days in hospital) Possible Engraftment

Last night after much personal debate, I decided after not being home since Tuesday night that I would go home and see my kids and get some sleep in a bed. I felt like we were on a stable course and he was more aware. Jim's sister sat with him in between treatments from 9 Pm - 2:00 Am and then he went to treatment and my Mom came and sat with him after his treatment from 5:00 Am to 10:00 AM. That eased my mind so much because I just don't want him to be alone and afraid. He likes to have someone there to hold his hand. It kills me he has to be alone during his treatments, but that I can't control but I can control the rest of the time.

Today we are definitely on the upswing. The doctors think he has engrafted which means the new marrow is making cells. That is pretty early. Normally engraftment does not happen until day 14 - 20 and they usually will suppress that to prevent graft vs. host disease, but at this point it is good he is engrafting because that will give him some immunity to fight this RSV off. He still has a breathing tube
and has some ventilator support. He actually stood and walked to the nurses station today. Doesn't sound like much but is HUGE.

Tonight, my brother is going to sit with him between treatments and then our friend Jimmy is going to take the morning shift. I am so glad he is more aware and that there are people willing to sit with him so I can actually sleep. It is also good for my kids to see me come home at night and see them off in the morning. I know these last 5 days have been very hard on them. I am sure when we pulled them out of school on Thursday to see him, they couldn't help but think it might be goodbye. They are amazing kids though. Last night when I got home at 8:00 (now remember I hadn't been home since Tuesday}, they had spent the day cleaning and doing laundry so I wouldn't have to come home to it. I walked in the door at 8:00 PM and they were in the kitchen together making French Toast. Neighbors had invited them to dinner so I guess this was a snack. Anyway, I came home to see them and take care of them but instead I was tucked into bed, Sarah rubbed my back and Nate slept with me. They have had much help from family and friends but it was good to see them pulling together to help.

Today I AM THANKFUL FOR Mom and Nedra who sat here with Jim last night so I could get some sleep, and for my kids who cleaned up so I wouldn't be stressed when I got home. Also, I am thankful for neighbors who thought to call my kids on a Sunday to come over for a "pity party" and some good food.

Just so you know I wasn't being rude when I called it a pity party. When Jim, Camille, and Andee all had cancer we would get together with our families and some friends and have "pity parties." There wasn't any pitying going on just alot of inappropriate cancer jokes, alot of laughing and alot of love. I miss those pity parties. Can't wait for another one.

Day #10 Post transplant

Today has been a fairly good day. I was able to get a couple of hours of solid sleep so I feel much better. I have slept here for 4 nights in a row and they kick me out for 3 hours each time he gets a treatment, so I am trying to decide what to do tonight. I don't feel like I can totally leave him alone because he still gets a little confused.

Today was about the same as yesterday. He is still on the ventilator but gets removed from it while he gets his RSV treatment. Which is actually terrible because he basically has to breath through a straw for 2 hours with no ventilation support. They can't give the treatment through the ventilator but he needs both the ventilator and the treatment. So, they compromise. So during the treatment his respirations, blood pressure, heart rate all go through the roof. On top of that no one can stay in the room so he is alone and anxious during that time. It wears him out. He is however lucid today and stood at the bedside twice. He can't speak with the breathing tube so we are having to come up with all sorts of sign language. Earlier he was getting a treatment and I looked at him through the window. He saw me and I guess signed I love You. I didn't know that one so I thought he was giving me the hangloose sign. (funny). Any chance he gets he holds on to me with a death grip. It is pretty cute. I guess he still likes me.

Anyway, I feel like we are making subtle progress. I guess as long as we are not moving backwards, I am good.

Today I AM THANKFUL for the sweet tender hugs and death grips he has on me.

Day # 9 post transplant - 18 days in hospital

Quick Update - Yesterday was pretty rough. Jim was very out of it. He didn't even know who I was. They did a brain MRI which came back with good results. Blood pressure was very high last night and he was very agitated. I was feeling like it was probably pretty slim for him to pull through this. I spoke with a PA who didn't give me much reassurance. We were all very concerned. In the middle of the night ( I have totally lost track of day or time) I was feeling pretty sad. I cried and prayed for a miracle.

This morning I was laying in the lazyboy next to Jim and I heard him stirring. The nurse told him he was OK and that his wife was here. I looked up and saw him looking for me. When I looked at him I could tell he was still in there behind those eyes. My heart lept. He mouthed (he cant talk because of the breathing tube)"What is going on." I explained everything from the beginning because I didn't know what he knew. I asked him if he was scared and he nodded his head. I told him he was in good hands and that we were all doing everything we could. He probably was a little confused why I was so happy telling him he was sick and had a breathing tube in. I was just so happy he was awake and responding to me. I told him I couldn't be in the room for the 2 hour treatment but that I would be down the hall. He gave me the thumbs up sign. That was the best thing I have seen for days.

We are certainly not out of the woods yet. He has RSV all the way down into his lungs. He still needs ventilation support and the fact he is a bone marrow pt complicates things further. I think he will end up in medical journals because the things they are doing to help him have not been done before. So, he is still very much at risk, and very sick but this is a very positive step in a positive direction and being awake more and alert just gives me more opportunities to tell him how great he is and how much I love him.

Today I Am Thankful For small miracles.

Day 8 - 1 step back

Hey, I just spent 1 hour updating this blog and lost it. Can't find it. Anyway, I will be more specific tomorrow. Right now I am very tired but I will give the run-down tomorrow.

Been a long day. Jim is stable in the ICU. Had to be intubated and ventilated. Receiving RSV treatments. I am staying here with him. Kids are with friends and family. This is a step back but we are still hopefull for his recovery. He is being "strong and of good courage." We are all hanging in there.

Today I AM THANKFUL FOR the strong, loving, BRAVE man that I am so lucky to be married to.

day 6

So, just a quick update on Jim. He is doing ok and is stable. Yesterday was a bit of a rough day. They moved him to the ICU because he was having heart rhythm problems which he has had before. They had to move him there to give him the medicine to fix the rhythm problem.

He started requiring more o2 and so they were concerned about a blood clot in the lungs. They discovered that he does not have a blood clot (good news) but that he has RSV (bad news). I guess alot of us have it but it is dangerous for babies and the immunocompromised. He came in to the hospital with a cough and congestion so I am assuming he brought it with him, but at that time his immune system was able to fight it off. During Radiation was when he started to get the headaches and congestion. Anyway, that makes me feel better, because we have been so careful about visitors.

So, he is still stable in the ICU. They have begun RSV treatments. The doctors are not too freaked out about the RSV because he does not have pneumonia. He is pretty confused and agitated. The MD's think that is medication related. He does not like his O2 mask and is pretty bull-headed about taking it off. He is notty.

His treatments are going to last from 5-10 days so he is going to lose his room on the Bone Marrow unit. That makes me sad. I get to go take everything out today and store it. He can't have his belongings in the room while they are doing the treatments. When he is done, they will give him another room on the unit and then I can make him a "new home away from home."

We are hanging in there!


Today, I AM THANKFUL FOR family!

Day #4

Today is definitely a new day. There is sunshine in the sky and it is beautiful outside. Wow, I slept good last night. I think all of the tiredness caught up and I slept like a baby. Yea! That was my first good nights sleep since this whole thing began.

Nate said that his stomach did not feel so good today. I don't think that he is sick, I really think it is stress. So, he is home. I was on my way out the door at 9:30 to head to the hospital and Sarah texted me that she passed out and then threw up. I went and got her. Again, I don't think she is sick. I think hers was a combination of low blood sugar and stress. So, now she is home. The two of them can sit in my bed together and watch "Animal Planet" {their favorite} and decompress. Poor kids. Grades may not be the best this quarter. Oh Well!

Don't have news on the car yet. I know it is going to be cha-ching though because they have to take it apart just to look at the oil pump and they told me that will take 10 hours. Lucky, my friend loaned me her car so that I have one and Spencer has one.

Jim did get 2 bags of red blood cells today. Doesn't need any platelets yet. He is still not eating. The nurse told me that if he still wasn't eating tomorrow that they would probably give him nutrition through his IV. He has been getting numerous drugs and fluids through his vein, but no nutrition. The MD told us yesterday, not to worry about him eating and that he shouldn't make himself eat if he doesn't feel like it because he would just make himself sick. It is common for most patients to end up getting fed through the IV for a while. He is still miserable and sleeping most of the day. Still has the headaches. No complications though. He is where he is supposed to be at Day #4. I don't know if he would say this, but I am surprised at how relatively quickly the time has actually passed though. Tomorrow he will have been here in the hospital 2 weeks. Hopefully, only 3-4 weeks left here.

Today, I AM THANKFUL FOR sleep and renewal.

Day #3

Sorry, no blog yesterday, but it was one of those days. Thanks Nedra for giving an update. Rough last couple of days.

The last three days have been pretty brutal for Jim. Today was worse than yesterday. No complications but he just feels really bad. He is extremely congested from one of the many meds which we think are causing his bad headaches. Nausea has been worse today and now he is not eating. I guess all of this is expected and will probably last another week or so. Blood counts are lower today and the MD said that Jim will probably need platelets and red blood cell infusions tomorrow. His white blood count is at zero. If he continues to not eat, they will feed him through the IV. I was going to bring the kids today but he didn't want anyone but me. He was kind of in and out of it all day. It is probably good that the kids didn't come because I know it would be hard for them to see. It is hard for me to see. Yesterday, Brendan took the trax train all the way out here and stayed for 20 minutes because I think he just couldn't handle it. But he hugged and kissed his Dad and told him that he loved him.

So, yesterday my day was like one of those scenes out of a bad movie. I had spent Friday night and was leaving the hospital at 2:00 to go to Sarah's violin recital in Ogden. My dear friend was taking her there and my mom was there also. So, I go out to the car and have trouble starting it. I realized I was very low in gas because I didn't fill up the day before so that I could hurry to Jim. So I get it started and I am driving down the street realizing I don't know where a gas station is. I call my Dad. As he is talking me to the station, my "check oil pressure" light flashes and my car stalls of course losing power steering and brakes. Then I am able to restart the car and get to the gas station. I am still fine and still smiling because I know that I will make it to the recital. So, after I fill up in SLC I realize the oil pressure light is still flashing. So, I call my Dad again and decide to stop in North SLC to check the oil. I text Sarah to have her teacher put her last on the program figuring I would put oil in the car and be on my way. So, again my Dad is talking to me on the phone telling me what oil to buy and how to put it in. Meanwhile my cop brother is on duty and is a few blocks away. So, I know he is coming to help me. I am still calm, still smiling and assured that my situation is still fixable. So, the girl clerk and me are checking my oil. It is full. My brother comes and some other guy is helping me. The guy messes with some thing-a-ma-gig and thinks that is my oil pressure problem. I start up the car and the pressure goes up. So, I am up and running and am sure I will make it in time. My brother actually follows me to the freeway and I think I am good. The moment I see my brother turn the corner the pressure starts dropping again. Again, I am on the phone with my dad. Now I am on the highway and I realize there is really a problem. So, do I keep going to make the recital or pull over in Centerville? I have an overwhelming feeling to get off at the exit. The moment I pull off of the exit, my car dies thus again losing power steering and brakes. I am able to make it to the side of the road. Then I get a text from Sarah. "Two more people and then I go Mom". At that point, I sob, because I know I am beaten. I know there is no way to make it in time and I have to text her back and tell her I am not making it. It killed me. I felt so bad for her. I just thought how unfair that her Dad has cancer, is in the hospital and can't be there and now I can't be there. I tried so hard but no matter what I did, it just wasn't happening. It was like one of those bad dreams that you are trying to run but your body moves too slow. I text her back, tell her I am so sorry, that I am proud of her and love her so much, and to have her Nanna record it on her phone. I told her to be brave and do her very best. She later told me that she was about to cry. So, she stood up there, closed her eyes, blocked out everything around her and played her song. I heard she did well. I am so proud of her. What a strong girl. So, my poor Dad gets another call (probably the 10th at least), I call AAA (Thank goodness I renewed my membership)and we wait for the tow truck. I told my kids they had better pray that I didn't fry the engine.

I think the hardest part of the day was that I wasn't able to tell my best friend in this whole world about my day. He only has enough strength right now to concentrate on the moment. He is always the one I talk to, so I felt a little empty. I couldn't help but think for a moment that this is how it would feel if I lost him. "Lost" is how I felt. But, my sweet brother John keeps reminding me that this is only temporary. I know soon that he will start to feel better and I will be able to rant and rave about the happenings of our life and he will actually care.

So, now you know why no blog. Just a little stressed out! I don't know why all of this surprises me because when it rains, it pours. BRING ON THE RAIN! I can say that now, but yesterday I wasn't laughing.

Today, I AM THANKFUL that there is always tomorrow.

Day 1

They call this day 1 because it is the first day after Jim's stem cell transplant even though he gets another bag today. They keep track of the days so they can measure how he is doing. Usually the first hundred days are the most crucial.

Today is Friday and I was going to come a little later since I am spending the night. I thought since I spend all day here and then go home a little fried at night that I would do a little house maintenance this morning. It is also my Dad's b-day and I wanted to stop in and tell him Happy B-day. I was hoping he and Jim could share a b-day. I guess they technically could since he gets another stem cell bag today. Any way, HAPPY B-DAY Daddy. I LOVE YOU!

I called Jim at 8:30 this morning and he didn't sound so good. He said that he woke with an excruciating headache and his stomach hurt. So needless to say, I got in the car and came right away. I know there is really not much I can do but I get a little panicky when I know he is having a hard time and I am not there. I wish he was closer, but LDS Hospital is the only bone marrow transplant unit in Utah. I guess it could be worse, he could be in another state.

So, today may not have any funny moments or alot of laughter, but if there is any we will be sure to find it. In this situation, you have to look for those moments because if you don't you can really get bogged down. I don't think he thinks I am as funny today though as he did yesterday.

So today I think we have hit a low. Not that more lows won't come but today his blood counts are down more and he feels pretty bad. He said that it hurts and takes too much energy to even turn over in bed. They (hosp. staff) are not really sure why the headaches but could be any number of things. They are not really concerned, they just treat the symptoms as they happen. It is pretty normal to feel lousy at this point. They have given him some pretty good pain meds so he has been out of it most of the day. It kills me to see him suffer but I guess though if you look at a silver lining we have to reach the lows before we can go up. So, hopefully the lows won't get much lower or last too long. We are looking forward to the ups.

Today I AM THANKFUL FOR dear friends who are feeding my family, picking up my kids when they are stranded at play practice or violin, picking up my daughter and giving her a "mommy hug" when she needs it, taking my kids for the night, sending us thoughtful notes, gifts, treats, and texts and praying for us. We love you and feel your love. We gain great strength from that.

I feel like I should leave you with a joke, but all I know is dumb blond jokes so I will spare you.

Day 0 - Brother in a Bag

The above video is Jim with Adj. General Tarbet who is the General for The Utah National Guard. He was a great sport. His visit meant alot to Jim. He didn't realize he was coming on "stem cell b-day" when he decided to visit. He probably would have chosen a different day if he knew he was going to have to be a movie star.

This morning Evan came and harvested another bag of stem cells for Jim. Unfortunately, he gets to come back tomorrow and give another bag.

HAPPY B-DAY JIM. At 4:30PM Jim got his first "BROTHER IN A BAG." He will get 2 bags of stem cells today and then another one tomorrow. Jim is pretty tired today. I am sure it is the cummlative effects of all of the radiation and chemo. His blood counts are dropping, which is just exactly what they are supposed to do.

My brother John gave Jim two web cams today and installed them so that the kids and Jim can talk to each other. Yea! What a nice b-day present.

Today I AM THANKFUL for smart people who have come up with these medical miracles.

Party Time:



It's My Party and I'll Sleep If I Want To:

Day -1 (Day of Rest) So they say

YEA! YOU GO EVAN! My teenagers would say "You Rock, Your Bad A, Your Sick, Your Dope, Your Epic, Your an animal. Those are all good things by the way.

Jim is doing well today. Today is his Day of Rest. That just means no toxins are being put in his body. He feels pretty good today. He even walked down the hall and visited Evan while he was harvesting his stem cells. Now Jim is pretty tired.

Evan finished harvesting about 2:30. He looked pretty tired also. Evan has been a real trooper through this thing. I told him thanks for sharing his stem cells and he said "I didn't realize I had a choice." I told him that you always have a choice. We were even told that there have been times when siblings have refused. Needless to say, not very nice siblings, but it has happened. So, THANK YOU EVAN!

After Evan left there was some excitement on the unit. The fire alarm came on and was not going off. I could hear alot of commotion so I looked out into the hallway. Apparently the fire sprinkling system went on in one room. In five minutes time it flooded several rooms and broke through a wall and flooded more. They were carrying patients out of their rooms. Jim is at the end of the hall, so we are lucky. That would ruin everything in the room. We are sooooo lucky.

Tomorrow is Day zero. Jim's new birthday. Sometime tomorrow he gets the cells that Evan is giving him. I told Evan to send his stem cells happy thoughts so they are nice to Jim. I wonder when he will start to look and act like Evan?

Today I AM THANKFUL for brothers that share their stems cells and that Jim's room is in the last pod at the end of the hall.

Day # -2 - Chemo Day 2

Yesterday was a pretty good day. Jim started his Chemo. Today is the last one. Yea! The affects of Chemo usually do not come right away like Radiation. So, I am expecting that in a few days his blood counts will drop more and he probably won't feel so good. But, today is pretty good. We have been laying in his bed doing a cross-word puzzle. Evan will start harvesting his Stem Cells tomorrow. He will have to come in early tomorrow morning to get an IV line placed. I am not sure what kind. So, he will be hooked up to a machine alot of the day. The machine separates the stem cells from his regular blood cells. Jim told Evan he will be in to see him tomorrow.

The primary kids from our church each made a card for Jim. It was really fun bringing him the box of cards today. We put them up on one of his walls. Here are some Words of Wisdom from the mouth of Babes.

"It helps to get a hobby when you are sick."

"I am sorry you are in the Hospital. My Grandpa went there and he died. Hope that doesn't happen to you."

"Bro Sproul pray to get better. We all do. You just have to have faith."

"Here are some of my hobbies you can do like "relacks", "wotch" tv or play a game.

"Brother Sproul you probably should think of fun things to do to be better like racing, playing with your kids, playing football, soccer and doing fun things at the Circus."

"Heavenly Father is watching over you. Jesus will protect you.

Today I THANKFUL FOR the innocence, faith and love of PRIMARY CHILDREN.

Day # -3 Chemo #1

I THINK JIM'S A LITTLE BORED!



Yesterday was a pretty decent day for Jim. He felt a little icky in the morning. Evan did come for a shot this morning and stopped in to see Jim. Jim was really glad to see him.

Sarah and I arrived at the hospital to spend the rest of the day with Jim. He did really well with his last radiation treatment. I don't think that he will miss going there today. By the way, that was a Radiation therapist, not respiratory therapist in the video. He came to take Jim down for Radiation. I make {suggest strongly} Jim walk to the elevator before getting in the wheelchair. That way, we can count that as one of his walks for the day. We thought it would be funny for Jim to push him in the wheelchair. I don't know if he thinks we are as funny as we think we are. I guess as long as we are laughing, that's what matters.

We even played "Catch Phrase" music addition. I wish I had a video of that because Jim had Sarah and I rolling with laughter when he was trying to sing his "Classic Rock" songs. It was fun to laugh and see him laugh. Allen and Brittany {Jim's nephew and his wife} came for a visit and played with us for a while.

Today, is Chemo day. A much higher dose than he typically gets, so I hope he will tolerate it. I know that through the 5-6 weeks here in the hospital, that there will be good days and probably a lot of bad days. As long as there are some good days or good moments, we can tolerate the bad.

Today, I AM THANKFUL FOR Laughter.