Clark's Brothers Gather for Test

Pick Me, Pick Me! Clark's five "full" brothers gathered from North Dakota, Sioux Falls and Watertown to begin the testing process as a Bone Marrow Donor. As their brother Clark waits in Utah for his own bone marrow to begin functioning and producing white blood cells, red blood cells, and platelets, these five boys left their jobs and school to be at Brown Clinic in Watertown this morning, to have their blood drawn and shipped to the University of Utah in Salt Lake City. Clark is at risk of needing a bone marrow transplant in the near future. Currently he goes to the hospital two to three times a week for blood transfusions while they also try adjusting medications in hopes that his own body will soon take over and begin functioning properly. Meanwhile, because of the time involved in testing for a donor for a near perfect match, we are moving forward with the testing so the donor can be named. You see, in my child bearing years Jim and I only planned on having six children. When Jim and I got married, I already had a son (Ryan) from a previous marriage. Our first child together was a beautiful little girl (Kristin) and then to follow came four more boys (Clark, Myls, Wyatt, and Fletcher). In time, I pouted and begged Jim to let me have just one more baby (even though we had agreed on six) in hopes to have another girl. He finally gave in but little did we know at that time, that I was already pregnant with Bjorn. Well you know the rest of the story. I didn't want Bjorn to be alone with the 3 year gap between him and Fletcher so it was easy to convince Jim that we should try just one more time for a girl, but this time we got Huxley. Eight was enough! Today I give much thanks for all these boys and understand now the purpose. The best bone marrow donors come from same sex gender and "full" sibling. Clark hasn't been very lucky with many things but IS lucky to have five chances for a perfect match within in own brothers. Of course Ryan who is a half brother, and Kristin & I are not of the same gender we wouldn't qualify. The youngest and most healthy boy is who they will hope first to be a match and work up from there. Guess that puts those last two little boys I begged for on the top of the list. If the transplant takes place, the donor will need to go to Utah for approximately 2 weeks. First Clark will be put in the hospital where he will receive chemo and or radiation for a week before, to kill off the abnormal blood cells. The donor will undergo a surgery where long needles are drilled in the hip and suck out one to two quart of bone marrow and blood. Usually about 20 entries are needed. He will be hospitalized over night but necessary to stay in the area for follow up. Once the bone marrow is harvested from the donor, Clark will be waiting to receive it by infusion by a port placed near his heart. No incisions are necessary for Clark or the donor. Clark's stay will be four to eight weeks if all goes as planned. It is expected that Clark will be very sick during that time until the new bone marrow graphs and takes over. The donor will feel like he has a broken bone in the area of harvest and will replace his own bone marrow in about four weeks. Our family would request from family, friends, and blog followers, specific prayers that the transplant will not be needed. For today, I stood with tears in my eyes as I watched my five sons step up and have their blood drawn knowing that any one of them could be the one to be the donor. Which one will it be?

This is Huxley, he is 14 years old. He is the youngest and healthy so chances are good he is it!

This is Bjorn, he is 16 years old. He is the one I was already pregnant with while the begging was going on for one more baby. Could it be him?

This is Fletcher, he is 19 years old and lives and works in Sioux Falls, South Dakota. Is it him?

This is Wyatt, he is 20 years old and works in North Dakota. Is it him?

This is Myls, he is 22 years old and works in North Dakota. Or, is it him?

Questions

This is just a small post for those of u who have questions for me. i know alot of u do so ask away. dont be afraid. u can ask anything big or small. it will also help me to post more.

I bet ur all thinking "It's about time"

well here i am, miracle man, superman, survivor, brother, and son to all of u. i am not good with thinking of things to write so i will try my best. I know alot of u have been asking me to post something, so here it goes. Its been nice being out of the hospital now for the past 2 weeks. i have been shopping alot...lol...for video games and new clothes cause none of my old clothes fit. I am still down 30 pounds. I dont recall somethings that happened to me in the hospital so i too am very grateful for this blog to remind me of the adventure. So what i am doin is writing all u for thanks to be there for me and to be such a big support for me in ur prayers, fasting, and whatever else people have done. I started at the very beginning of the blog and i will read through everything...comments and all posts. Then once i get through i will post again with more memory of my "Hotel" HAHA i mean hospital stay.

Therapy

Clark is getting an early wake up call everyday. Home health comes on Monday, Wednesday, and Friday. Susan draws blood, checks his incision, takes vitals, and makes sure everything else is going well. They run labs on the blood to keep close tabs on his liver levels as well as his red cell, white cell, and platelet counts. Then the transplant team will call if they see anything out of alignment and either adjust his meds or order an infusion. Physical therapy comes every Tuesday and Thursday. Ian is usually here for 45 minutes unless Clark isn't feeling up for the task. If his blood or platelets are low, so is his strength and energy.Clark's weight continues to fluctuate a lot. His appetite is good but he still can't eat a lot in one sitting. I think the commercials in the hospital really worked as they were supposed to because the foods he's craving are mostly from restaurants. He's had Chick Fillet, Arby's, Domino's, Applebee's. Ligia, you're probably cringing right now. We've also been enjoying fresh juices almost everyday thanks to the juicer from Karla! We love it! Also thanks to Janeanne for the BBQ sauce all the way from North Dakota. With out that he might not get quite as much down. He puts it on everything.
Macaroni and cheese with hot dogs. To my credit, one of the first nights home from the hospital I asked Clark what meals he's craving and this was one. He also wanted Tater Tot Hotdish, Chicken Pot Pie, and Chicken Almond Ding. Mostly comfort foods from growing up. At least this is better than what the bishop fed him the other night. He came over with a plate of food from their FHE activity. Bishop opened the bun and there was no burger inside! We all had a good laugh. You can bet he was out the door and came back with armfuls of food. We are thankful for all the thoughtful visitors we've had. They have brought food, treats, services, and conversation. Thank you!

Clinic

Clark had his first post transplant clinic today. It is pretty much just a check up to make sure everything is going well. We were able to combine several trips into one. First he received platelets which is a couple hour ordeal. Yesterday he got a phone call that his liver levels were showing signs of rejection so he also had to have a liver biopsy. Dr. Hutson said the liver looks healthy, it isn't enlarged, and the blood is flowing through it well so that was good news. Clark, and the rest of us, also learned that they removed his gal bladder during the transplant surgery. Who knew? I guess it's somewhat standard so that he doesn't have problems with it down the road. Then, finally, off to clinic. They were pleased with the healing of his incision and everything else looked great. We will be back next week.So after the long day at the hospital we headed home. All of this must have caught up with Clark because he was not feeling well at all. He was in a lot of pain from the biopsy and could barely walk. He was able to relax somewhat on the drive home but was still nauseated and uncomfortable. When we got home, I pulled McLane out of the car and looked up at Clark who was just standing beside the car, waiting. I noticed the blank stare on his face and asked if he was OK. With his head hanging, he managed to slowly shake his head back and forth. I quickly stood in front of him and told him that he could lean over on me if he needed to. Immediately, his body fell limp over my shoulder. Now what? I looked around and thankfully saw my neighbor's garage door opening. I yelled to her for help and she went to get Kellen. We got Clark inside and he started to come to. I don't know how long he was out but he doesn't remember anything from getting out of the car until he got inside. We laid him in his recliner and got his feet up. He started to feel better as the night went on. This was probably the scariest time I've had with his since he's been here. Hopefully it was just a combination of a long day, little to eat, a lot of pain, and it won't happen again.

Huntsman Center

What a day! Clark and I were both a little nervous for this meeting with the Bone Marrow Transplant team at the Huntsman Center. Yet another Institution Clark can add to his list. We know there is a 98% chance he will have to have the Bone Marrow Transplant - BMT, but we're riding on the other 2%. I was busy taking notes so I could pass the info on to all of you so if this isn't the most coherent, that's why. I have about five pages of hen scratching to sort through.

We were just getting onto the Belt Route when Clark's phone rang. We were nervous enough already but when Alaina said that Clark's liver enzymes were elevated which is a sign that the body is rejecting the liver we didn't know what to think. They want him to come in tomorrow and have a liver biopsy to see what's going on. So, as hard as it was, we put that in the BACK of our minds so we could absorb everything else we were about to talk about.
Walking through the Huntsman Center, we couldn't help but notice the many people with smooth, shiny skin atop their heads. The chemo and loosing hair has been one of Clark's biggest worries with the BMT. We also saw Kellen's grandma, Grandma Davis, who volunteers there pushing a treat cart. One of her friends has been waiting for a liver since about June and just died last week because she didn't get one in time.

Once in the office we met first with a social worker. Both hospitals have been very good about providing emotional support. She talked with Clark and asked him all about how he's doing and what needs he may have. She asked if this whole experience has affected him spiritually. Clark answered, "It has pretty much changed me 100%." As Bruce later said, "If this has helped his spiritually then it's all been worth it." She also asked what he is looking forward to when this is all over. He answered, "Going back to work, Christmas, and Alaska."

Even though it isn't for sure that Clark will have the transplant, they are typing us siblings because it takes about two weeks to run all the tests. There is a 25% chance that a full blood sibling is a match. Because gender doesn't matter, they drew two vials of blood from me while I was in there today. They will take the youngest and healthiest match which would make me the last choice but you never know. I know we would all gladly be the donor if it was needed.

Dr Boyer explained that the virus that attacked Clark's liver triggered and immune response that went crazy and attacked the marrow. This is a known but rare case. Dr. Boyer said he has never personally been involved in a BMT of someone who had a liver transplant, although it is in the literature. They are calling Clark's condition severe acute aplastic anemia. When looking at a chart of Clark's levels, they saw that he did have a response to meds awhile back but they have continued to drop since. This gave them hope that by increasing his dose, they may get another response. He said that Clark is on a weak dose compared to what they use. This may also be the cause of his elevated liver enzymes. The question is . . . how much time and effort do they put into giving the immunosuppression to do it's job as an alternative to transplant?

IF Clark needs the transplant, he would first undergo a harsh dose of chemo for 5-7 days. This will kill all the immune cells to create a clean slate for the healthy stem cells to rebuild. This news was somewhat relieving and Clark responded, "Ah I can be sick for a week." This is an extremely isolating time because of his low immune system. Ok, I'm not going to write this as if it's Clark anymore. Law of Attraction right! The recipient will receive the new stem cells through a line just like an infusion. So the hardest part is really the chemo and being isolated. Post transplant, the patient needs to stay within 45 minutes of the hospital for 100 days, including the 4-6 weeks in the hospital. More anti rejection meds are required but unlike the liver meds, these can be weened completely, usually one year post transplant. This creates a new immune system from the donor. Allergies are part of the immune cells and sometimes transferred. Thankfully there are little or none of those in our family. The immune system can go overboard and attack the recipient, even with a perfect match. This is called Graph vs. Host Virus - GVH. Usually it attacks the skin, live, and intestinal track. Because the liver is in danger with GVH, it makes Clark's case a little more tricky. The large amount of drugs the recipient receives need to be metabolized by the liver so they need to make sure Clark's liver would be up for the task. Dr. Boyer said, "This is about as complicated as it can get, if you can imagine that." Clark and I both chuckled a little and Clark said, "Ya! I can imagine that!"

For the donor: The donor will need to be in Utah for about two weeks during this time for clearance and the procedure. It is a surgical procedure where the donor is under general anesthesia. They are face down and about 20 draws of marrow are taken from the hip bone through the back. They stay in the hospital over night, have pain for about a week, maybe some anemia, and they're on their way. No long term effects.

Clark is the first person from South Dakota to put a pin in the map.

Overall, we left feeling better than when we went in. We thought we would have a date for a transplant when we left but instead we have hope that one won't be needed at all. Again, it would be a miracle but now it doesn't seem like a far stretch medically. I pray that Clark's immune system will respond to the meds and his marrow will start to function as it was designed. I know Heavenly Father has the power to do this. I'm thankful for the trial of faith I've had and know that this is only another testimony builder. Let's grow together. If we unite in prayer once again I know we will see a miracle.

Infusions

Since Clark's discharge, he has been going back to the hospital almost every other day for infusions. Home health comes to the house to draw blood every Mon, Wed, and Fri morning. Usually by that same afternoon, we receive a phone call that Clark needs to head immediately to the hospital because his levels are too low. Once she said that he wasn't even to shave because his platelets were so low. These infusions take several hours, and for one reason or another, they have taken even longer for Clark. Once they were training a new nurse, another time someone else had a reaction.
Probably the longest one of all was when we were out and about having a great day. We went to Kate's and Clark got a hair cut and saw his dogs. Then we went to RC Willey and he picked out his chair, which he has slept in about every night since. His chair became his bed and his bed became a table. Then we were at the mall to pick out a hat when the phone rang. Alaina said we were to come straight to the hospital and even though the Infusion Clinic was soon closing, the staff was being held for Clark. We arrived at the hospital at about 3:45 and walked out after 1:00AM. He received two units of packed red blood. The orders were for three but it was taking way too long. Thankfully the kids were so good and attracted much attention from the nurses. Exhausted, I walked out to get the car warmed up and pulled to the front door. I strapped both kids in, turned the key, and nothing. The car wouldn't even turn over. Both babies were now crying because they were so tired. At this point I just laughed. I thought, "What else?" Thankfully it was just a dead battery and security was able to jump us.I could be caught up on the blog with all the hours I've spent in waiting rooms at the hospital. But of course my hands are full juggling two kids instead of a computer. I've even become friends with the receptionist. She took Willow for a walk and we are exchanging recipes. I'm addicted to recipes if you don't know. I'll let you know how they turn out. Even though it's hard at times, I never mind all this. I will do anything it takes to help Clark improve. Each day I'm praying that his bone marrow will kick in and we will not get the call to come for infusions. This is just one more test of our faith. I feel that so many were joined together in prayer and fasting during the scary times a few months ago and now we have eased back. I think our prayers need to be just as pleading for Clark now. Pleading that he will not have to go through a bone marrow transplant. That will be yet another miracle, I know, but I have faith it can happen.

On The Mend

As mom said, "It must be a beautiful sight to look around and see Clark laying there." And it is. The first couple days he was here it was nice to hear him in his room, singing along with his music, and see him when he'd fallen asleep in my recliner upstairs for several hours. It has been great to have him here with us and doing so well. It didn't take Willow long to adjust to our live-in guest either. She loves to check on him first thing in the morning and always asks if he feels better. The very first night he was here she played XBox with him and now has a permanent seat in front of his TV in her panda chair. We get a good laugh out of her because of how she says Clark's name. Willow has always been a great talker but she says her c's and k's like t's. So Clark's name comes out "Tart". To make it even funnier, somehow she scrambled her sounds a little more and now she adds an f to the beginning and calls him, "Untle Fart"! Ah, that's great!Home health comes out every Monday, Wednesday, and Friday. They draw labs, change his dressing and monitor his wound, clean and flush his pic line, and make sure that he's he's doing well overall. Clark is sharp on his meds and procedures, even catching the nurses many times. I do his dressing change on the days Home Health doesn't come. I was nervous at first but am getting better with it. His wound is healing very well and very fast. We can notice considerable differences each time we change his dressing. He has gained a few pounds already and increases his strength and energy everyday. He can do stairs much better and faster and I rarely have to help him. He still gets short of breath at times but keeps working hard. He isn't doing physical therapy right now but is up and moving around more than he was in the hospital.

Clark continues to read the blog. He keeps up with all of your comments and often has read them before I do. He'll ask, "Did you see so-and-so's comment? It was really good," or "That was a great quote." He mentioned that he's going to put a post up one of these days so - Stay Posted! I've encouraged him to write as much of his experiences down as possible while they're still fresh, for the sake of preserving history. He is a little discouraged because his meds give him attention tremors. He shakes when he types or writes which is frustrating for him. He understands the value of getting it out on paper in his own words so I know it will come when he's inspired.

Discharge

The big day we have all been waiting for finally arrived. I hurried to the hospital knowing that Clark would be anxious and nervous about this day. When I arrived he was still waiting for the pharmacist to come with all his meds and a short orientation on each of them.. In the meantime we packed up the rest of his things and straightened his room a bit. Dr. Box and his team stopped by for any last questions and well wishes. I listened to Dr. Box's words very carefully as he said that at Clark's next visit with the bone marrow transplant team, they would discus "IF and when" he would need the transplant. Given his levels, it would be a miracle if he didn't need a transplant but I have seen a few of those over the past months.Only a few hours later than expected, we were ready to leave. But not without taking a trip through all the units Clark had stayed in in the hospital. First was the SICU. I pushed Clark through the doors in a wheelchair but he said that the nurses said that the next time they see him he better be walking. So we stopped the chair and he stood up, walked a few steps, then stopped. We were right outside HIS room when he was in isolation. Clark endured a lot in that room, and now in his place was another man, tube down his throat, cords, tubes, and machines everywhere, loving family at his side. Clark couldn't take the sight and broke down crying, unable even to talk. He said how hard it was for him to see these people and know that that was him only a short time ago.Terri was the first of his former nurses to come running and give Clark a hug. Dave was also there and they both congratulated him, wished him well, and asked him to stop by again. Next we walked through Intermediate care. He wasn't there for long but all the staff remembered him. Last we hit the 5th floor where Clark hoped to see Dallas but he wasn't working.

Earlier, Clark had turned away his lunch because we thought we would be leaving much sooner than we did. Now almost 3:00 we were all hungry and still at the hospital. Clark loves broccoli cheese soup and the hospital makes a pretty tasty bowl of it. Clark asked for it everyday but they never had it. When he looked at the menu of the lunch he sent away, wouldn't you know, broccoli cheese soup. So Clark's first meal after discharge was right in the cafeteria to get a bowl of broccoli cheese soup. Eric and Kate, who were kind enough to watch my kids this whole time, joined us.Finally it was time for Clark to go home. We were blessed with a beautiful November day of sunshine and warm temperatures, although the sun hurt Clark's eyes for some reason. They said he could take the wheelchair out but we graciously refused as the sight we have all been anticipating is to see him WALK out of the hospital doors . . . and he did. Again some emotions came to the surface when he was surprised by his ride home, his own car. Eric and Kate repaired some damage that had been done in an accident just weeks before Clark went in and this was the first he saw it. As he walked toward his car he said, "Ah that looks good!", then buried his head in Eric's shoulder.I looked around at all the people who probably wondered what the big deal was as we videoed and took pictures. They had no idea that this frail, thin, young man had just escaped death and what a miracle that he is alive, walking, and going home. Looking at him you would not call him strong but he has fought harder than most of us ever will, and still has much of a fight ahead. It felt good to drive away from the hospital, this time with Clark riding shotgun.As we drove, Clark commented that he was a little nervous to ride in a car and that everyone seemed to be going so fast. It felt strange for him to see all the cars and people rushing about their day. He talked several times about how anxious he was to go back to work. We made a quick stop at Best Buy to get a game. I offered to get it but Clark wanted to go in. He was a little self-conscious about how he looked with his thin hair and mask and wondered what others must think of him. He said that others would probably look at him as he used to look at people with masks. Again, perspective was gained. We also stopped by the bishop's shop on our way. He was very excited to see Clark and said that he would get him right in to give a talk in church. Last but not least, we went to see his dogs. They were as excited as he was and jumped up on him whining. We visited with the Larson's for a bit before going home.
I'm thankful to have Clark in my home and grateful that I can care for him during his recovery. It was an exciting day, a little bitter-sweet though given the unknown projection for the bone marrow transplant. Clark said he can go though anything it takes, as long as he's alive in the end.

Overwhelmed with Information

(Monday's post a day late. Yes Clark was discharged Tuesday. That one is still to come.)

I can hardly believe that tomorrow is the day. It actually didn't hit me until Clark called and asked if I could be at the hospital at 3:00 today to go through discharge instructions. When I walked into Clark's room he was already talking to a guy and filling out paper work to try to get on financial aid. He said that Clark's bill is at $1,300,000 and charges are still coming in. Plus, a bone marrow transplant costs $500,000, given there are no complications that is. So the scare is that he will exceed his $2 million lifetime max. Also, long-term, his 15 different meds will cost about $100 - $200 each month. We are hoping that he will qualify for some assistance so that money doesn't have to be a stress for him on top of everything else he is dealing with.

The transplant team stopped in to check up on him. Dr. Box said that he is scheduled to come back on Nov 10 for the marrow biopsy results and to meet with their team. He said that Clark's bone marrow has failed, probably as a result of the original condition that killed his liver. His bone marrow is not producing any of the three blood components - white or red blood cells, or platelets. He has been receiving transfusions and injections to keep these levels up and will continue to receive them as needed. No other organs appear to be under attack at this time but they will be watchful for that in the future. One of the ladies was especially excited to see Clark. She said, "It's so awesome to see how good he looks, last time I saw him was in intensive care." He's come a long way since then. Dr. Sussman has called Clark's condition HHV6 and said that it is a rare virus that attacked the liver and he has only seen one other patient with it in 12 years.

Clark is worried about some of the side effects. When he learned that Dr. Box had a liver transplant he knew that he was the perfect person to ask. Clark asked about sun exposure. Dr. Box explained that Clark's medications cause his cells to have a hay day in the sun, leading to skin cancer. He will need to wear a high SPF sunscreen or long sleeves and a hat whenever outside. He will also need to see a dermatologist 3-4 times a year for examinations at first. It will taper off but he should never go less than twice a year.

Then he asked Dr. Box if he also lost all his hair. Dr. Box looked right at Clark and answered, "Oh you are way sicker! You are about as sick as anybody we take care of that survives!" He explained that Clark's body was shutting down and they were trying to keep him nourished. So this along with the amount of infection, and the amount of meds, his body just had all it could do to stay alive and wasn't focused on his hair. Dr. Box assured him it would grow back and even said that one of the side effects that most people see as a negative is that it makes you grow hair. Great! Because of this med he will also have to pay close attention to his gum health. He was instructed to work the gums and get them well stimulated and cleaned twice daily with a soft bristled brush. He was told to be careful not to make them bleed and not even to floss while his immune system is so low. He should have a dental check every six months and optometrist once a year.

Clark will have a Home Health nurse coming out to help Monday, Wednesday, and Friday. They will draw labs and fax in results, as well as maintain his wound. It is critical that his labs are drawn and his meds are taken at the same time everyday. Labs will be drawn 30 minutes before he takes his meds so they will show his levels with the lowest amount of meds in his system. He will need to go back to the hospital for clinics every Wednesday. One of the things they will do there is monitor levels to detect rejection. The liver is an incredibly hearty organ and manages rejection well as long as they catch it and give steroids to correct it. If he was rejecting he would not feel any different until late stages so close and regular labs are really the only way to tell. He is taking 15 different meds, some of which will be tapered off. The hospital will give one months worth of supplies and meds at discharge, then it will come on mail order.

His incision continues to heal well. It is coming closer and closer together. As it does, Clark is getting sensation back in those areas. He said it hurts a little bit but mostly feels strange. He has noticed a huge change in his posture. He says he is hunchback but this is normal as the incision is stretching the skin from over his shoulders and back to pull the incision together. He was encouraged to stretch little by little and eventually get to where he can lay completely arched on an exercise ball.

Some of his other discharge instructions included no driving for about 3 months, not to lift over 5 pounds, to avoid crowds of people including church and to wear a mask when out or if visitors come over, and to gain weight. Clark check out of the hospital at 137 which is about 40 pounds less than his normal weight. For the rest of his life he needs to avoid sick birds and sick cats. He is never to change a litter box or even a baby's diaper. I told him he better let his wife know that before she says "I do." He is not to handle dirt, like gardening, at all this year but after that should always wear gloves. He needs to avoid buffets because the food is left out and open and many people come in contact with it.

We are all thankful that Clark has made it this far. Many of the doctors and nurses have told him that if he were older or in poor health previously he would never have made it. We are also nervous about what is to come with the bone marrow transplant. Dr. Box's closing council for Clark and everyone was that "too much reading on the Internet will have you dead and buried in a year. Just live your life." I think prayers are needed for Clark now just as much as ever.