Hometown Hero

When I woke Clark up this morning to start his IV he said, "I had a dream that I went back to Watertown and they had a parade and everything for me. I was famous! Everyone wanted to see my scar." I told him it's not too far off from the truth.

This is an article from Pizza Ranch's Newsletter. Click on the image to enlarge.

In and Out

No, not the burger. Although they are mighty tasty and we have enjoyed them once since they started popping up in Utah. Rather, in and out of the hospital. Clark was discharged from the U on Tuesday and readmitted to the Huntsman on Thursday. We should start saying that Clark is having visits home instead of visits to the hospital. Between American Fork, the U, and Huntsman, he really spends more time there than he does here.

He was admitted because his levels were at an all time low. Clark knew something was up by the way he was feeling. He was supposed to have an infusion on Monday but was in the hospital and they didn't do it for some reason. So when he went for his infusion on Thursday at American Fork he was really feeling it. He barely made it in. He got light headed and was seeing stars as he walked through the doors. The threshold they usually want his platelet count in is 10-20 and Clark's was at 3. His hematocrit was 10 and they want that at 24. While at the Huntsman, they wanted "tank him up" with blood and platelets to get his counts back at a healthy level. They said they will aggressively get his platelets up and bring the bleeding down. He was being infused around the clock the whole time he was there. They said that they will "keep him here as long as they feel it's unsafe to be outside and he's not needing daily transfusions." They originally estimated his stay to be 3 days but he was discharged the very next day.

Clark had blood in his urine once in the last few days and while there they also found an organism in his urine. It is contagious so staff had to gown up and they made sure he was using his own bathroom at home. He is being treated for that with an IV antibiotic three times a day.
We have heard what a nice facility the Huntsman Cancer Institute is and we were not disappointed. The rooms had more of a hotel feel than a hospital feel. They were big, had a pull out couch for two to sleep on, a desk area, closets, big bathroom, and even the colors were cozy and warm. You order your food off The Point Bistro menu and it's brought to you by "room service" whenever you want it. Clark said it was too bad that he didn't have a room like that to stay in when he was in the hospital for months on end. Even though they were nice, he was glad that he only had a one night stay.

C-dif

Clark is still in the hospital. There was talk of releasing him yesterday but he had a 104 fever so they decided to keep and monitor him longer. He was also experiencing pain in his side which they thought might be a reaction to the antibiotics and the CMV working its way out. Another stool sample showed an infection called C-dif (I think? I wasn't there for this conversation). For this he needs to take a pill three times a day for a week and shouldn't have anymore problems with it. As much as he hates it, looks like it was a good thing he was in the hospital to catch these things. Plans are for him to come home tomorrow.

Some have asked if it's nice to have our house back to ourselves for a bit. Honestly, no. We like having Clark here and actually miss that he's gone. I'm sure Hemi does too. For the whole first day she paced the house whining. Willow always asks where he is. "Oh, he's at the hopisal? He's getting blood?" I have pulled four loads of laundry from him room though. It's nice to know he's being taken care of, even if he does choose to eat Ramen or Pasta Roni over a homemade meal.

That being said . . . My confessions . . . We have eaten salmon and drank grapefruit juice while he's been gone! MMmmmm! One he hates, the other he loves but can't have. Both would make me feel guilty enjoying them in front of him.

"Home Sweet Home"

This was what Clark said as he walked into his hospital room last night. Ya, that's right. He was admitted to the U. As you may recall he was supposed to go the hospital on Thursday to remove the blockage in his bile duct. They called on Wednesday and said that they would wait until after the upcoming BMT. The drainage tube would just create an easy passageway for infection and bacteria. This along with his even lower immune system during the BMT, not a great combination. So he was thrilled not to have to stay in the hospital and went to the Jazz vs. Calvs game instead!

On Friday they called Clark, wanting him to come in for blood on Saturday at Huntsman. Clark asked if there was anyway he could get it that day at American Fork. Of course that was fine. Sometimes they just don't think of the inconvenience it is to drive up there. Just before getting hooked up for blood, his phone rang again. This time it was GI at the hospital. Results from his colonoscopy biopsy were in and he has a virus that needs immediate treatment. They wanted him to come in ASAP but it takes a couple hours to get blood, home to pack and eat, and an hour drive. We arrived at the hospital at 9:00PM. Admitting didn't have any orders and didn't know where to send us. Great! After much searching, a few phone calls, and an hours wait, Clark had a room.

He is on the 5th floor, just next door to where he was months ago. Yoko, one of our favorite nurses from before, was his nurse last night. She remembered him too. Clark said it felt weird to be in that room and able to move around. He recalled memories or his first shower and that "dang ol' enema." Clark weighed in at 140 lbs, which is the same weight he was discharged at two months ago.
So the diagnosis? Clark has CMV colitis. It is a virus, similar to Epstein Barr or Mono in that many "normal" people get it, have mild symptoms, get over it, and never even know they had it. On the other hand, it can wreak havoc in immunocompromised people. It can show up in many areas like the eyes, colon - as in Clark's case, and what is a major concern - the transplanted organ. It is also the type of virus that once you have it you always have it and it can flare up at anytime. He will receive a 14 day course of IV antibiotic medication but is only expected to be in the hospital for 2-3 days. We know how quickly all of this can change and hope for the best.

Bye, Bye Bentley

Anyone who knows Clark, knows that he LOVES his dogs. He got Hemi three years ago and Bentley shortly after. Both dogs are always by Clark's side, in his bed, on the road, and everywhere in between. It was a hard decision, but Clark decided to sell Bentley as it was best for both of them. Clark could no longer care for both dogs and give Bentley the time and attention he needed. He was on KSL for only a few days before his new family came to get him. They have already emailed us that they are very happy with Bentley and said he is a great fit for their family.

On The Road Again

At his last visit, Clark asked Dr. Hutson if he could start driving again. A smile came across his face when Hutson answered, "Well, I don't see why not." Clark said, "It's been over six months since I've driven. It'll be like I'm 16 again!" A big thanks to Eric and Kate and the Bishop for fixing up and taking such good care of his car.

Clark said he wasn't even going to try to date until he could drive again. Ladies watch out!

Don't tell Mom, but this picture is of Clark driving . . . on the interstate.

The Latest

Even though our updates are coming less often, Clark has had a lot going on lately. We have been at one of the three hospitals he frequents a couple times a week. There are three major conditions he is dealing with right now.

1. He was told last week that a bone marrow transplant is necessary and they are going to move forward with it as soon as he gets insurance. We have been in the application process for Medicaid since October and it is slow moving. We were just told yesterday that he was approved by the medical board, now need approval from the financial board. We need to fax them a lot of information and hopefully he can get approved. It will be such a blessing if he gets on Medicaid. I don't know what he will do without it. When he was discharged from the hospital he was at $1.3 million. Since then he has had MRIs, Ultrasounds, Biopsies, Home health care, prescriptions, and regular infusions. I bet he has already passed the $2 million mark. Anyway, back to the BMT, we don't have a time line because it's dependent on the insurance. They said they will probably use the adult rather than the minor for a donor, meaning Wyatt. They will look at other aspects of their health as well. Clark isn't scared for the BMT. He was somewhat relieved to have an answer and a plan of attack. He is dreading the hospital stay which will be 4-6 weeks if everything goes well.

2. A blockage was found in the liver in an MRI done just before Christmas. He is scheduled for a procedure to remove it on Thursday. They said there are a lot of risks involved in Clark's case. Some are excessive bleeding because of low platelets and infection to the liver. The blockage is in the bile duct, which has caused a bile leak. So they have to insert a drainage tube through his rib cage to drain the bile before they can clear the blockage. Clark was very worried about this procedure but received a comforting blessing last night that all will be well.

3. While at the hospital, they sent him for an urgent colonoscopy, which turned our 1 hour visit into 10. We haven't discussed this on the blog before because it is a little more personal, but Clark has had frank blood in his bowel movements. That's the best I can think to describe it. I can't say he has had blood in his stood because there is no stool with it. Since he has low platelets, there is a lot of bleeding! You get the picture. And just in case you don't . . . Often times it keeps him at home instead of going to church, family gatherings, or other activities. He can always tell when his platelets are low. They were surprised that he was walking and not in any pain. The colonoscopy showed that he has "a continuous area of bleeding ulcerated mucosa with nodularity and stigmata . . . " blah blah blah! Pretty much he has a tumor or ulcer in his colon. In Dr. Hutson's words, "I don't know what the hell this is. I have never seen it before in a liver transplant patient." He has a few ideas of what it could be but will not know what it is or how to treat it until they see the biopsies under a microscope. Worse case scenario, which we have become accustomed to consider, he will have that portion of his colon removed. More on this by Wednesday or Thursday.

Huh, is that all? Yes, for now that is all!

Clark's Favorite Holiday is Christmas

Clark in his new suit with Bishop Sampson

In a phone conversation with Clark, shortly after he got out of the hospital, he became emotional as he expressed to me that Christmas is his favorite holiday and he wouldn't be able to come HOME this year. I replied that my car drives West as easy as it does East, South, and North and that I'd bring our family to him this year rather than him back to South Dakota. I could feel his excitement and relief immediately. Plans started right away with getting schedules for school and jobs cleared. We too were excited that we could all be together again. Due to the bad storm being forecasted our plans for leaving changed slightly. We decided to leave earlier than planned to try beating the snow storm expected in SD. Ryan came home from Minneapolis on Tuesday afternoon, we packed four people per two vehicles along with winter gear, snacks, gifts, meat for Kristin's freezer, and a washer and dryer for Kristin too. Ryan, Bjorn and Myls headed to Sioux Falls to pick Fletcher up once he got off work at Tradehome Shoes about 10:00 PM. Dave, Wyatt, Huxley, and I dropped our Yorkie, Mercedes off with my sister Loy's family to watch while we were away. We met up with the other boys in Sioux Falls and began our long journey just after 11:00 PM. The roads needed to be respected but we knew they weren't as bad as they soon would be once the storm hits. Fletcher drove Ryan's truck following behind me driving Dave's truck. We met up with snow and fog in the Rapid City area so it wasn't as easy seeing the boys behind us. I was moving along pretty good when I got a phone call from Fletcher that they had run out of gas, I didn't even know he wasn't behind me anymore. It wasn't so funny then as it is now, but we went 21 miles into Rapid City and back out with gas for the boys who were stranded. That cost us over an hours traveling time. Reason? They said they were listening to "tunes" and didn't pay attention to the gas gauge. Dave's tank is twice the size of Ryan's so we didn't even think about filling up with gas yet. We sure kept an eye on things better after that. The farther we got from SD the better the roads were. With all the extra drivers we drove the trip straight through, however my trip alone back in August was faster than this trip. It was great to be in Utah with the kids.

The morning and afternoon of Christmas Eve was spent back at the hospital. Dave and I took Clark to an appointment that had been scheduled for an ultrasound on his liver with concern of low blood flow. While there, the doctor ordered an MRI to follow right away that afternoon. We did have time to take Clark out for a nice breakfast between appointments since he had to be fasting for the ultrasound. It was very hard for me to walk back into that hospital. Memories surfaced quickly and I was choked up as I walked along side of Clark this time.

Kristin had made our traditional Christmas Eve supper of Chili and Cornbread, which we totally enjoyed. She is such a great cook. We hung our ornaments on Kristin's tree and told why we chose the ornaments we did, then opened our gifts. Last we made a visit to Bishop Sampson's house about 11:00PM with a gift of appreciation for him from our family.

Clark had told me about the ornament he found online. It was so cute that I had to copy it and emboider him a sweatshirt with it on. It says, "I CONTAIN RECYCLED PARTS". I embroidered sweatshirts for each of the kids that applied to their personalities. Clark has received a lot of comments on his sweatshirt already. We found that Clark's, Kristin's, Dave's, and my ornaments all were associated with Clark's liver transplant.

We took family pictures on Saturday before four of the boys headed back to South Dakota. Dave, Myls, Huxley, and I stayed another day. We were greeted back in South Dakota with a lot of snow, 22 inches at home. The boys moved a lot of snow before we got home. Dave spent the next two days finishing up moving the massive amount of snow in our yard.

Clark called me yesterday with the results from his MRI. Things aren't as good as we hoped as it was determined that one of the arteries going to Clark's liver is blocked and he also has some stones in his liver. Clark has an appointment with his doctor on Wednesday in which we will then learn what the plan will be to correct his condition. Please continue to keep Clark in your prayers. He has a long way to go yet.

The Lord has been good to us and we will forever acknowledge that, however I must admit that I was excited to see 2009 end and a new year begin. My prayer is for 2010 to bring good health and a prosperous life to Clark. Clark spent his New Years Eve with the Singles Ward at a party in their church. May we all set and reach our desired goals. Our prayer proceeds for the donor family to continue finding peace and closure. We continue to remember your generous gift.

Qualifying Donors Named

The names of the boys that match as bone marrow donors for Clark have been announced. Both Wyatt and Bjorn have matching bone marrow for Clark and are willing to do what ever is needed if and when the time comes for a transplant. Clark continues to need transfusions weekly but there is some improvement with the levels. We continue to hope and pray that a BMT will not be needed. Doctors are not in a hurry to make that decision at this time as the blood is the last thing to stabilize after transplants. However, we are hoping a decision will be made some time in February. Bjorn was a bit nervous in even getting his blood drawn for the test but knows he can step it up if needed. Wyatt on the other hand says he is ready anytime. If a BMT is needed, they will do some secondary tests on each of these boys to decided which ONE will donate. We are behind you all the way boys, each one of you.