Thursday, April 29, 2010

Miracles Are In Progress

When life is great we often over look the things in this world that are true miracles. Only the hand of the Lord could make them possible. Like the lyrics to the song that is playing tells us of a few of those miracles. When we are in earnest need of a miracle such as we are experiencing in Clark's case. It will be a miracle if Doctors will be able to convince Medicaid into approval of Clark's BMT which is in urgent need. That miracle is in progress! Clark received a letter from Medicaid that they will have a hearing with his Doctors on May 13, 2010 at 1:00 PM MST. I feel its a miracle that the third hearing with Medicaid, which originally was expected to be set for a month or more, has now been cut in half. Prayers are being answered. When we have done all we can, the Lord will allow us to stand still, while He puts his arm forth.

Doctrine and Covenants 123:17 reads, ". . . let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed."

Ordinary Miracle by Sarah McLachlan

It's not that usual when everything is beautiful
It's just another ordinary miracle today
The sky knows when it's time to snow
You don't need to teach a seed to grow
It's just another ordinary miracle today
Life is like a gift they say
Wrapped up for you everyday
Open up and find a way
To give some of your own
Isn't it remarkable?
Like every time a raindrop falls
It's just another ordinary miracle today
Birds in winter have their fling
And always make it home by spring
It's just another ordinary miracle today
When you wake up everyday
Please don't throw your dreams away
Hold them close to your heart
Cause we are all a part
Of the ordinary miracle
Ordinary miracle
Do you want to see a miracle?
Its seems so exceptional

Things just work out after all

It's just another ordinary miracle today
The sun comes up and shines so bright
It disappears again at night
It's just another ordinary miracle today
It's just another ordinary miracle today

Wednesday, April 28, 2010

Someone Needs You!

So many people have asked what they can do to help. When Clark had his Liver Transplant we asked people to begin donating blood, and you did. It has had a tremendous impact in personal lives as well as to the Red Cross across the Nation. Please continue to do so. Now as we research and feel the desperation of Clark needing a Bone Marrow Transplant we again learn of a need for donors. This is a time when you can give life without loosing your own. We are so thankful in our case, that Clark has two brothers that both match. But what if they didn't? What if we were looking for someone like you? There are many Clark Kimble families who need you. Please consider becoming a bone marrow donor!

PS Check out the little boy's shirt at the beginning of the video.

Sunday, April 25, 2010

Home again, Home again, Jiggity Jig!

Clark was able to come home from the hospital yesterday. In good spirits, he told Bruce and Illa that all he has is E coli this time. "Oh, is that all?!" He does have Acenetobactor virus too, although serious, he has had that one before. Doctors aren't too worried about either because they caught them quickly but he needs to receive two different IV antibodies to fight them. The schedule is a little rough. He receives them at 6AM, noon, 6PM, and midnight for 2 weeks. It takes about 15 minutes to hook everything up, an hour for them to run, and another 10 minutes to disconnect. Makes for a long night. He has a slight loss of appetite and makes several trips to the bathroom from all the extra fluids but is feeling well overall. While in the hospital he enjoyed watching the Jazz game with Logan, Aaron, and Grayden.

Speaking of appetite . . . A favorite from childhood are peanut butter and cheese sandwiches which Clark has been eating at home lately. He also requested one from the Huntsman for lunch one day. They asked, "What kind of cheese would you like?" and brought it right up. I took a shake down to Clark this morning with lots of good stuff in it - banana, strawberries, orange juice, carrot juice, lots of spinach, omega oils, honey, and vanilla. When he asked me what kind of shake it was, I thought it was because he didn't like it. Instead he said it was really good.

One of the viruses that Clark has is very serious. I was worried about the babies but the doctors said that people with healthy immune systems should be ok. He warned to use extra good hygiene, be careful and clean in the bathroom, and to avoid sick people because both are at risk. They said that regular hand soap is best and antibacterial soap is not recommended because it also kills the good bacteria. He also said to wash cans and jugs that we bring home from the grocery store. Clark said it would be easier to go raw! He can't do any gardening, needs to avoid crowds, and cannot use public pools or hot tubs ever!

Nurse Kristin is back and as good as ever. The doctors wanted to make sure I came to the hospital so they could show me how to run the IVs. Clark and I both told them that we had done it before so they didn't go through any instructions. Clark's meds were delivered to the house and when he opened the box to find an IV pole, we knew we were in trouble. The IVs before were little pressurized bulbs and all you had to do was hook them up and they ran themselves. These ones are real IVs with tubes, and clamps, and regulators, and I don't even know what the other parts are for or even called. Clark and I read the instructions very carefully and several times. We figured something out that works and Clark is still alive but I'm anxious for Susan to come on Monday. So far I've pulled the tube from the IV bag and antibodies went spilling down my arms and back, we release the trapped air from the tube by running some into an empty pop can, and drained the antibodies completely when some blood backed into the tubing. Scary! He's probably more at risk with his life in my hands than with the viruses.
That's a lot of IV's in his fridge.

Saturday, April 24, 2010

40 Day Fast

As many of you know, Medicaid denied Clark a bone marrow transplant twice. Their only reasoning is that it's too risky. It is true that it is very risky in Clark's particular situation but without the BMT his condition is fatal. The doctors plan to have a hearing to appeal their decision but this will not be for another month.

Clark desperately needs a Bone Marrow Transplant. As I write this he is in the Huntsman Center again. He has and will contract anything and everything he comes across and it is wreaking havoc on his system. He continues to be infused with 2-4 units of blood products weekly. In the meantime, he is sick! He sleeps all day, gets petechiae rashes, severe headaches, bacteria and viruses, has low or no appetite, and aches and pains which have all become a way of life for him. But with the BMT it wouldn't have to be.

The scripture in Doctrine and Covenants 123:17 comes to mind, ". . . let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed." There isn't much that we can do at this time. But we can pray, and we can fast. I'm not asking you to fast for 40 days. Rather, during this time, at least one person will be fasting each day, creating a continuous 40 days of fasting for Clark. We ask that you pray that Clark will receive the treatment he needs and have a full recovery.

The first day of the fast will be this Sunday, April 25th. The fast will continue for 40 days, ending on Thursday, June 3rd.

Ether 12:12 For if there be no faith among the children of men, God can do no miracle among them; wherefore, he showed not himself until after their faith.

Thursday, April 22, 2010


Dr. Parker had a conference call with Medicaid yesterday. I'm not sure on the details of the conversation but I know that they denied the BMT again! The doctors are going to push this into a hearing but that will not take place for another month. As urgent as this is, Medicaid is backed up and cannot get to this any sooner. In the meantime, Dr. Boyer and Dr. Parker are in close contact with each other and are exploring other avenues to get going with the transplant. They are moving forward with as much treatment and preliminary testing, such as organ functions, performance status and labs, that they can do in preparation for the BMT so that when they get the word go, they can GO! From there, things will move forward very quickly. First and foremost, Clark needs to get over these viruses and bacteria he keeps getting. They cannot start anything until he is rid of them.

Clark was admitted to the Huntsman again yesterday because his blood test came back positive for a bacteria. He has one in his lungs which is an older one, and another in his blood which is new. Clark doesn't have a fever and feels well. At first they were unsure of what exact organism it was but knew that it was class Gram-negative which is concerning. They suspected it could have been from the plasma infusion. This is the most frequent complication with plasma transfusions as plasma cannot be stored at a cold temperature. It must be stored at room temperature but is supposed to be used within a certain time frame to avoid bacterias from developing. Well, more testing was done and results came back which identified the organism as E coli. It is not from plasma and he could have come in contact with this anywhere. They said it is easily treated with a 14 day antibiotic.

Last but not least, there were also signs of the Acinetobacter virus again. They will look into this more to determine if he does have it or not and decide treatment or discharge from there. Acinetobacter is a tough virus so we're hoping he doesn't have it!

Wednesday, April 21, 2010

Red Cross Luncheon

Each year the Red Cross holds a luncheon to show appreciation for businesses, organizations, or groups who host blood drives. This year they asked Clark to be their poster child and to speak at the luncheon. He humbly declined but nominated me to speak for him.

When we arrived, there were many who were anxious to meet Clark and shake his hand. Anita, of the Red Cross, warned me that her entire office has become very attached to Clark and feels as though they know him personally through the blog.

There were about 70 people there. A couple Eagle scouts were recognized for blood drives they had organized as their project. Another man was recognized for having recently donated his 14th gallon of blood! That's a goal I hope I can reach!

Both Anita and David Sickich spoke prior to me and they were emotional so it was a tough place for me to start. I tried to keep it short and sweet as I knew people needed to get back to work and such. I told a bit about Clark's history, his liver transplant, and now need for a BMT. I said that he has been dubbed a superhero but it is people like them who give the superheros out there their power. There were a few crying eyes and I know many were touched by Clark's story.

Afterward, a man came up to me and handed me a business card. He was emotional and his words were few and choked. He said that he wants me to send him Clark's story and he will try to get him nominated for Thursday's Hero. I'm not familiar with this but all you Sportsbeat Sunday watchers will know that this is a BYU program where they recognize real heroes and they get to meet the team and it is sometimes on TV.

Overall this was a great experience and a good opportunity. I know that Clark would trade all of this for good health in a heartbeat so the most we can do is share his story and hopefully some good will come of it.
Clark, Anita and Brittany from the Red Cross, and Kristin

Saturday, April 17, 2010

Medical Record Novel

Many have asked how many units of blood Clark has received in all. It's such a large number that we cannot even estimate what how much it is. The hospital doesn't have one place where they have this number either but said it would be in his medical records, which Clark called to request. A packet arrived in the mail, about three inches thick, and a bill for $104. My mom had it copied and bound for $25 and was up until 2AM reading through it. She said that much of it was in medical terms and over her head but still very interesting to read. She learned some things that she didn't know before. Things the doctors didn't come right out and tell us. Or maybe they did tell us but in a more gentle way than the candid truth recorded in the records. The transplant alone takes up 10 pages. One of the things we learned that while we celebrated and danced at news of a successful transplant finished, the doctors recorded in his chart that he was returned to SICU in critical condition.


Clark was at a routine appointment at the Huntsman when one of the nurses came in and told Clark that Medicaid had denied the Bone Marrow Transplant. Both Clark and the doctor were surprised by this. The letter that came in the mail said that statistics show a 75% survival rate for the first year and a 55% survival rate for the first 3 years. I guess they didn't like those statistics. We don't either!

The question we have is who are they to judge the risk involved. They aren't doctors. And they certainly don't know Clark. Dr. Sussman said to Clark, "Do you know how I know that you're a survivor? . . . Because you survived the Acinetobacter virus." And he survived this at his lowest I might add. This same virus is going around among the troops in Afghanistan right now and there are many dieing from it.

If it's a matter of cost, it can't be much cheaper to pay for the $11,000 worth of infusions he receives weekly. Clark receives the most infusions of anyone at American Fork hospital. It's also not cheap to cover the cost of the expensive pills he has take now to eliminate the built up levels of iron in his system. When you receive blood, your body uses all it's components but the iron has no place to go. A normal healthy person uses their blood over 120 days. A normal infusion will last 60 days. And then there's Clark. He is going through blood within a week. Also not cheap to pay for the regular hospital stays, antibodies, and treatment he has each time he contracts a new virus or bacteria.

So what do we do now? Three of Clark's doctors plan to make an appeal and get them to accept the procedure. They have never had to do this before but are confident that Medicaid will change their minds. Clark told the Bishop about this, he talked to the Stake President, and if they have to they will take it all the way up to President Monson. There is a possibility that the church can negotiate with the Huntsman Center for a reduced price and then cover the cost. We have also talked about writing letters to congressmen, news stations, and even Oprah.

My mom, Wyatt, Loy, and Blake drove out to Utah in hopes of attending the hearing. Unfortunately it was postponed until next week but it was good to see them anyway. We had a fun and busy time with them and hope they will be making the trip again very soon for the BMT. My mom plans to bring Wyatt out, then stay during the few weeks he's needed out here in preparation for the transplant.

Receiving the BMT is Clark's only hope right now. Yes, it is risky but without it there is a 0% survival rate. The doctors have now said that he URGENTLY needs the BMT.

Mom's sister Loy and her husband own their own semi. Being the serving sister Loy is, she told mom she'd get them to Utah in their semi so mom would have no cost and they could make money in doing so. Loy was able to get freight to haul to Green River, Wyoming on their way out. Then Loy found freight to haul back to Minnesota which they picked that up right in Orem, Utah, just 15 miles from my home.

This is Blake, Loy's son. He was the main driver and the only one with a CDL but Loy took the while he slept. While Blake drove, Wyatt took shotgun, while Loy drove, mom took shotgun. Mom said it was one of the most wonderful and fun trips she has been on. It was comfortable and easy to get sleep in the nice rig they drive.

Mom and Wyatt on their trip to Utah in VanDyke's Semi. We hoped the Bone Marrow Transplant would be accpeted and that Wyatt would be admitted into the hopsital to begin the BMT. Instead they cut their trip short and headed back to South Dakota to work so they didn't use their "time off" up before its needed later.