Thursday, May 27, 2010

Re Re Re Re Admitted

We have all been on the edge of our seats with nerves putting cramps in our stomachs and flutters in our hearts as we anxiously await an answer. I held my breath as I listen to the message left on Clark's phone from the Huntsman Center. Just another update. Due to the length of Dr. H's spewing, the disadvantage of Clark's doctor's having to leave the hearing early, and that one of his key doctors wasn't there, the judge asked the doctors to write a letter on Clark's behalf. She called the Huntsman yesterday to let them know that she had received the letters and would make her decision as soon as possible. There's only a few hours left in today's work day, government offices are not in on Fridays, and Monday is a holiday. So if we don't hear in the next couple hours, we're looking at middle of next week. That's THREE WEEKS! I do feel that her asking for the letters is to Clark's advantage because they will be the freshest on her mind. The coordinator at the Huntsman said they were very compelling letters so maybe they will play on emotion more than medical numbers and figures. We have asked for a copy of the letters and are wanting to read them ourselves. Clark has won the hearts of the staff at all three hospitals he frequents and they have told me that they are also anxiously awaiting an answer.

When I took Clark up to the Huntsman yesterday to have his eye checked out I didn't think I'd be coming home without him again. Ha, I just realized I'm letting you know he was readmitted and didn't even have time to tell you he was released. He made it three days this time. He was discharged on Sunday afternoon and readmitted Wednesday afternoon. I took him up for an appointment and was wandering the halls with the kids while he went back. After an hour or so I saw two nurses pushing someone out in a wheelchair. He was hunched over in the chair, all wrapped up in a blanket and hooked up to IVs. I thought, "Oh, that poor guy is not doing too well." My heart fell into my stomach when I realized it was Clark.

He has been waking with a fever every morning which goes away after a few hours but because of his condition and that it is reoccurring they want to check it out. His eye has also been causing him a lot of pain which leads to head aches, and is still very blurry. They will call in a specialist to look into what is causing this issue. Hopefully nothing serious but in his state it's always better to be safe than sorry. He is at the Huntsman, which makes being hospitalized a little easier on him. He can even order peanut butter and cheese sandwiches if he wants.

Wednesday, May 26, 2010

Some wear their heart on their sleeve.
I wear mine on my chest, engraved in scar tissue in the shape of a wishbone.

I wish for good health.
I wish for a restored immune system.
I wish for a mortal future with a family of my own.
I wish for a bone marrow transplant.
I wish for a miracle.
I wish for life.

I wish for blessings to be poured upon everyone
who loves me, cares for me,
and prays for a miracle for me.

Thank you!

Clark Kimble
May 26, 2010
(Written by Clark's aunt in his voice)

No Word Yet

What a long day! Waiting by the phone every minute of the entire day, finally giving up. I'm hoping no news is good news. I have no answers. I don't know why we didn't hear anything and I don't know when we will - only hoping it will be today. Government office??? Wyatt and I are anxious to get on the road. We will post something as soon as we hear. Thank you for your support and all I can offer right now is to wait with us. It has been hard but stay beside us please.

Monday, May 24, 2010

Hear Our Prayers

Tonight the wind doth blow so hard in South Dakota. As if a storm is about to come in. Its the chatter of our prayers being carried to your door Lord! Whether it be voices loud, or whispers silent, they flow a steady stream to you tonight. As night closed in on the day and then windows to heaven seemed to close, we pray thou heard our final prayers and pleas this eve. I know prayers are thundering from most everywhere, from South Dakota, Minnesota, Nebraska, Iowa, Louisiana, South Carolina, Washington, Georgia, Kansas, Wyoming, Nevada, and Utah just to name a few. But prayers no where else can be spoken so earnestly loud, then from a darkened room in Utah, where a young man lay, wanting life more than anything else. Please hear his prayer. He is my son and your son Lord, please grant the bone marrow transplant. Though his father is gone yet his spirit lives, I know he is praying tonight from near your throne. Hear his grandparents and many other relatives that have gone on before, I know we all agree. Please oh Lord, let it be. And Lord would it be asking too much, if not only to give him a long and healthy life. But could he run, return to work, have children and a good wife?
Please silent the winds, calm the storms, bring light into the morn. Give us peace when we awake, settle our minds, rest our weary eyes, and our trembling lips. Remove the doubt, build up our spirits and prepare us for the decision we will hear from Judge Quinn. Might there be no question to the procedure or outcome of Clark Kimble's need. Please let Clark rest tonight, let him build up strength to once again fight and undergo another tremendous transplant. Let him live long and be an example and a servant for thee. In The Name of Jesus Christ, Amen.

Thursday, May 20, 2010

Tuesday = D Day

Clark is still being hospitalized at The U. He has been there one week today, but was only out for 24 hours before that and was checked right back into the same room. The burst blood vessel in his eye was caused from having too much blood from transfusions. They are giving him two units of platelets each day to dilute it and that should help his eye heal. Because of his blurred vision he cannot see the TV, computer, read a book, or even to text on his phone. He said that all he does is ask for Diloted (pain med), and when that wears off he asks for Benadryl which knocks him out, then he asks for more pain meds so he can continue sleeping. Because the viruses that he has are so dangerous, his door is constantly closed. Nothing that comes into the room comes out. Even his meals are brought on disposable trays. He would have to completely gown up including mask and booties to leave the room so he doesn't. It's also easier to just stay in bed now that they've inserted a catheter to administer antibiotics directly into his bladder in hopes to target the virus. They put the antibiotic in, clamp the tube, and he has to hold it in for 1 hour 3 times a day. Clark said it doesn't hurt but feels like he has to pee all the time.

Clark can have visitors and has enjoyed those who have come. Thank you! His room is now covered with glow-in-the-dark constellations and he has such things as play-dough and coloring books to help pass the time. He also enjoys the outside meals that have been brought in. Hospital food gets old FAST. You make his stay a little more bearable, as well as lift our worries. We cannot be there everyday so it's comforting to know that others are visiting.

Thursday's court session has been heavy on my mind. It was hard to sit in the room and not be able to say anything. It was empowering to hear Dr Boyer defend Clark, yet sickening to listen to Dr H's arguments against him. While talking to the attorney outside after the hearing, he said that many people had told him to prepare himself to even be in the same room as Dr H. No one had one good thing to say about Dr H, but no one had one bad thing to say about Judge Q. I believe her decision will be fair. It was obvious to see that Dr H had spent countless hours of reading and learning Clark's complicated case, as well as many more hours researching to find studies and statistics in his own favor. I can't imagine investing that much of my life to prove that someone else doesn't deserve a chance to live theirs. Dr Hudson said that he is also fighting with Dr H for approval for a liver transplant. Another life denied. Loy got to talking to a couple in the ER waiting room and learned that he had a kidney transplant. There must be some hereditary condition because his mother and sister also needed kidney transplants but died because Medicaid denied them. DIED!

His doctors talked to Judge Q yesterday about the status of his case. She said she needs more time and will make a decision on Tuesday. We hoped it would be sooner but at least we know that much so we aren't on the edge of our seats every minute of everyday until then. The doctors want to keep Clark in the hospital until then so that if the decision is YES, they will immediately start preparing Clark for the BMT. Wyatt and my mom will also hit the road toward Utah as soon as we hear the good news. We are all hopeful. They can also keep working more aggressively to get him better and keep him that way.

We have done all we can do up to this point. Now we need to keep praying with all our faith that Heavenly Father's hand continues to be at work in Clark's life as well as ours, and that He will direct us in the paths we should go. After fasting for Clark last weekend, I was left with the overall impression that this is true and I need to put my ultimate trust in Heavenly Father.

Tuesday, May 18, 2010

The "Rest of the Story"

"Hello Americans, I'm Paul Harvey. You know what the news is, in a minute, you're going to hear
... the rest of the story."

Clark walked into the court room in hopes of getting a BMT soon!

I wish Paul Harvey was alive today and could have covered the 2 1/2 hour Medicaid hearing but I'll do my best to recap it. It took place at the Utah Department of Health Building in Salt Lake City. A huge building and covered under security upon entry. Clark, Kristin, Loy and I attended. Clark's two doctors (Dr. Boyer and Dr. Parker) along with the University Hospital's attorney were also there. Medicaid was represented by two doctors in which I will refer to as Dr. H and Dr. M. The Judge was a lady, Judge Q. Also in attendance was the stenographer. After being sworn in, Judge Q asked who wanted to begin. Very arrogantly, Dr. H said he would take 2 hours himself, shocked by the answer, Drs Boyer and Parker said they had clinics to get back to at 3:00 PM. Judge Q gave Dr. Boyer the floor first. He explained Clark's condition and their previous treatment attempts. Transplants are so successful that they are usually the preferred and standard treatment but with Clark's history they wanted to try an alternative treatment, which they did for 5-6 months with no response. His bone marrow biopsies show no normal elements and display complete failure. His liver function, and all other organ functions including lung and heart meet and exceed Medicaid's criteria as well as their own criteria for a BMT. Clark has a high performance status of 90% which is quite good! "My assessment is that Clark is an excellent candidate for a matched sibling transplant which will restore normal marrow function." Dr. Parker added his comments. Judge Q asked them brief questions such as if Clark has any other health issues that would complicate his survival rate. To this Dr Boyer responded that he has no major organ dysfunction and a high performance status and that there is nothing to indicate that he would have any better or worse chance of survival than any other patient.

Now the floor was given to Dr. H. With a stack of papers a couple inches thick at his finger tips and each page heavily highlighted and marked with stickers, and additional folders filled with papers in the corner of the table at least 8 more inches high, he began with a monotone voice and a long boring story. His words were accompanied by a smirk on his face, his body language was cold, and his manner was less than any bum would acquire. He requested a recess numerous times to leave the room to either communicate with Dr. M or to make copies of missing documents he thought he had already taken care of. He appeared as a fool, stumbling to pronounce medical terms that he read from his files. His presentation was filled with negative statistics of past cases as near to Clark's as possible. He included skewed statistics such as lumping Clark into a study of people 16 and older. The judge caught this and asked how much older. Now Dr. H had to clarify that it was 16-67. I don't think Clark at 24 needs to be compared to a 67 year old. He rambled and rambled and rambled, finding the rest of us in the room (including Judge Q) quite bored. At one point Judge Q asked him to summarize rather than read all his information. I feel it was his tactic to make it long enough that Clark's doctors would have to leave. Well, Dr. Boyer was getting fidgety due to time, and finally spoke out to get the Judge's attention that he wanted to say something before he had to leave. Dr. H rudely and loudly said, "I believe this is my time to speak", in which the Judge over ruled and gave Dr. Boyer the floor. Dr. Boyer's paper was filled with notes he had taken to present a rebuttal to much incorrect information Dr. H had just stated. Dr. Boyer ended by saying Clark has 12 to 18 months to live without the BMT, and the sooner we do it the better. Dr. Parker gave his closing statements. Dr. Boyer and Dr. Parker then left, leaving only the University's Attorney to represent Clark. After a brief recess we were back in session. Clark was sitting in the back of the court room beside me. He was very uncomfortable and not feeling well. He was squirming etc, which caught Judge Q's attention. She interrupted Dr. H to ask me if I needed to take Clark out and make him comfortable! She then looked at Dr. H and asked him if there was a bed or couch Clark could lay on until court had finished. Just as expected, he abruptly responded, "NO". So I took Clark to my car where he rested for about another hour till we got done. After Dr. H had finally finished reading which appeared as a medical journal, Judge Q gave Dr. M a chance to comment. He began by saying "First of all I would like to praise Dr H for the beautiful job he did of presenting this case." I believe there were several silent snickers in the room at that comment... (hahaha) He finished by saying "It would be great to see a miracle for this nice young boy. I don't think this is it." Talk about two cold hearted Drs. I wouldn't want either of them at my bedside. Judge Q asked them, "with the two prior denials, how many Drs are on the board that made those decisions?" Dr. H and M looked at each other, shrugged their shoulders, and then Dr. H answered 4, Dr. M answer 8, humm, wouldn't there be a single answer? I feel Judge Q was asking very fair questions to each party and that her questions were on Clark's behalf. Then she gave the attorney a chance to make a closing statement, he responded. "I'm not a medical doctor so I can't defend or disagree with much of which Dr. H has read, and I agree with Dr. M that we do need a miracle. It's nice when we are given the chance to do something to help a miracle happen." I got shivers and began to cry. What a powerful way to end!

During a recess, Judge Q asked the stenographer how long it will take her to get the transcripts ready? She said this will be complicated due to all the medical terms Dr. H read so it will take her a little longer than normal. Judge Q sternly asked her to make it a priority and do it ASAP. Once Judge Q gets the transcripts, she will make a decision. She then has a board she will present her decision to and if they agree and say yes, then that is final. If Judge Q says yes, but the board says no, then she can appeal with them to come to an agreement. They have a "reasonable" amount of time to make this decision so who knows how long that is? Meanwhile we anxiously wait and pray.

Clark is still in the hospital. They feel they finally have his fever under control. They would get it down and it would immediately return. He was at one point on four antibiotics. He has fluid on his lungs so is currently on oxygen too. A blood vessel broke behind his right eye so his vision is blurred and in red tones, perhaps that was due to his high fever. He is sore and aches all over. He does have a virus in his blood they are treating. Poor boy doesn't have ANY white blood cells so he can't fight off anything he comes in contact with. He is in a pressurized room with the door constantly shut. Visitors, nurses, doctors, and anyone entering his room need to be gowned up. Warnings are on his door of no immune system so everyone needs to take a lot of precautions to protect Clark right now. Drs. assured the Judge that with his BMT his body would be able to fight these things off again. They also said that due to the fact that we have an identical sibling donor, that the risks for Clark would be much less. Please let that MIRACLE begin soon! ...good day!

Thursday, May 13, 2010

Hurry Up and Wait

Due to the fact that we have been in the ER with Clark for five plus hours and know many are anxiously waiting for news, we are giving a brief update. . . . the hearing today went well. It was difficult to hear, and stirred up much emotion but we ultimately feel it went in Clark's favor. No decision was made today. The judge understands the urgency of the case and requested that everything be done ASAP and be made a priority. We hope for a decision by early next week. More details on the hearing later. Believe me, much more!

Clark didn't feel well all day today and even stepped out of the hearing early. The hearing took a total of 2 1/2 hours so we made Clark as comfortable as possible in the car until it ended. We then went straight from the hearing to the ER at the U. He had a 107 fever (anything over 100.4 is considered emergency for him), abdominal pain, shortness of breath, hives, and nausea. He was given Tylenol which broke the fever, saline, pain meds, and two doses of antibodies. He will be admitted again, just over 24 hours from being discharged.
Continue to pray for him and especially for those who have the authority to make the decision on his life. Thank you for your concern and know that we are also praying for each of you.

Work a Miracle for Clark!

Clark's Medicaid hearing will be today, May 13, 2010 at 1 PM MST. We will post the out come as soon as possible. I received a call from the Bone Marrow Coordinator yesterday on my way to Utah. She said that if the hearing goes in our favor, that they need to begin procedures ASAP. She was wondering if I had brought Wyatt to Utah with me? I said I hadn't but we could get him out right away. She said Clark is 100% ready and the next step is getting Wyatt's pre-testing done. He will need several tests done to be sure his health is protected as well. We are SO blessed that Clark has a sibling donor. There are so many less risks because of the donor being a sibling. We are praying the decision of the Judge is in our favor today.

My sister Loy, my father Joe Larson, and dad's caregiver Wishbone, made the trip to Utah with me. Keep in mind my dad is 100 years old. The trip went well with the exception of the weather. We drove in horrible winter conditions from Hot Springs SD to Rock Springs Wyoming. Many hours of low visibility, slush and/or ice. Traveling at speeds of 40 to 50 mph that entire distance slowed our traveling time down but we all managed to keep our spirits high. My father played his harmonica much of the way and we sang with him, the songs we knew. Our first stop was to the hospital where Clark was just being discharged so we were able to take him home. He was under a lot of medications that had him somewhat mellow, but he was certainly happy and surprised to see his grandpa. Since Clark has been unable to come to SD on many occasions and especially had missed grandpa's 100th birthday party back in August, we felt honored that he could make this long trip to see Clark instead. My sister Cheryl gives the following prayer which will give us strength to endure today. Thank you Cheryl

Work a Miracle for Clark!

This is my prayer for you today, Clark. I pray that you will be blessed to be invigorated in spirit and hope and strengthened and healed in every fiber of your being.

Dear Heavenly Father:

As the time for Clark's Hearing fast approaches, I thank Thee for the miracle regarding its rescheduling and for sustaining Clark in the meantime.

I plead with Thee to hear the prayers and behold the fasting of so many who earnestly seek Thy continued miracles and deliverance's in Clark's life. Be at Clark's Hearing tomorrow, Dear Father. Unleash Thy great powers in Clark's behalf and please work a miracle in the mind and heart of the judge who will be hearing Clark's case. Bless him or her to be overwhelmed with a sense of urgency and the spirit of charitable compassion. Give him or her peace that the bone marrow transplant is the just and right and reasonable choice and help him or her to rule accordingly in favor of Clark's receiving the bone marrow transplant.

Work a miracle within the minds and hearts of Clark's medical team. Make them warriors, fully dressed and capable for battle, armed with faith and truth and power from heaven. Let their advocacy be influential and persuasive and blessed by Thy Holy Spirit. Give them tongues of fire and righteous might and inspiration. Go before them and be at their side. Surround them with Thine inspiration and compassion and truth. Bless them for saving Clark's life thus far, and please grant unto them opportunity to continue to minister needed procedures, surgeries, and treatments that will or may be necessary for preserving Clark's life and restoring him to full health and vigor.

Let the spirit of gratitude be expressed to Medicaid for the many thousands of dollars they have spent thus far and will continue to spend for Clark's treatments in the future. Please let Medicaid feel appreciated and thanked for all that they have provided thus far to Clark. However, Father, since they hold the key to whether or not Clark will receive the urgently needed bone marrow transplant, and since Clark needs this surgery in order to live, tomorrow could become somewhat of a war zone. Therefore, Dear Lord, despite Medicaid's past benevolence, we petition Thee, Dear Lord, to thwart their denials of paying for Clark's much needed bone marrow transplant. Work a miracle in the minds and hearts of those representing Medicaid, that they will not have a tongue to utter discouragement or to withstand the statistics, faith, expertise, testimonies and pleas of the doctors and those who represent them. Confound the minds and intents of Clark's enemies, O Lord. Confuse their arguments and make them appear as fools. Remove their flooring from under their feet and cause them to stumble and fall, like drunken men.

Work a miracle now upon Clark's spirit to restore him to full hope and faith. Bless his weary body that it will be able to find and hold strength beyond normal means and be able to undergo a bone marrow transplant with success and lasting healing.

Please bless Kristin as Clark's faithful and faith-filled care giver, and please provide needed blessings to her and her family. Please bless the doctors and team of medical experts who have operated on and attended Clark in these past 11 months. Please bless Rhonda and Clark's entire family for their faith and prayers and support and love. Please bless all others who have felt concern and/or expressed it via any and all means: prayers, fasting, temple worship, blog maintenance and support, financial donations, blood drives, letter-writing, and all other feelings and acts of love. Please especially bless Wyatt Kimble as the willing bone marrow donor and the unknown soul who unselfishly donated his or her liver for Clark's liver transplant. Please always bless that person and his/her family for this sacrifice.

Bless Clark mightily, I pray, Dear Lord, with the strength of spirit and mind and body to go forward with faith each day of his life. Bless him to have The Holy Spirit as his companion. Speak peace and comfort and hope to him, and grant him life. Watch over and be with him, as Thou hast in the past. Help Clark to reach out to Thee with real intent, granting back unto Thee whatever life Thou dost grant unto him.

Work a miracle in all these ways, I pray, in the name of Jesus Christ, Amen.
Sent with love on the wings of faith and prayer, Cheryl 5/12/10

Another Hospital Stay

At this point, Clark hates going to the hospital. He will often hold back telling the Dr's certain symptoms if he thinks they will tell him he needs to come in. Clark has been in severe pain for the past week. He developed a blood clot in his arm at the site of his picc so they removed it and put it in his other arm. It felt better for a day but then pain started in that arm also. I asked him if it felt like the first arm did to know if it was a blood clot or maybe something else. He said, "It feels like a knife is stabbed all the way through my arm, and just staying in there. It was only stabbing half way through in the other arm."

After days of minimal movement and symptoms not improving, I suggested, then insisted that we go to the ER. Clark declined. Bishop Sampson came over to help me convince him . . . or carry him out of needed. I couldn't do that by myself. Clark felt fevered to the touch and said he would go in if he saw the numbers on the thermometer. He has been told that anytime he has a fever over 100.4 it is considered emergency. Clark's temp was 103.1. He threw a bag together, the bishop gave him a blessing, and we left. One part that stood out to me in the blessing is that he said that Clark has more trials to go through here, but he will be blessed with strength and desire to go through them. At first I was disappointed to hear that he will have more trials but I think the key word is "HERE". Also, the strength and desire are much needed right now.
We went to American Fork Emergency hoping they could solve it there without having to go up north. We weren't so lucky. They gave him saline, a dose of antibodies, some pain meds, and sent us to the U. Clark was admitted at 4:00AM and soon after I headed home.

He was in the hospital until Wednesday. He said they didn't do much with him the whole time he was there. He continued to receive antibodies, infusions, and pain meds. They removed his picc and have to just wait for the blood clots to go away. I asked how he can get blood clots when his platelets are so low. There are other components of the blood, like proteins, that can also cause clots. They cannot give him blood thinners for obvious reasons.Mom, Loy, and two unexpected visitors - Grandpa and Wishbone, made the long trip out battling a winter storm and driving through the night. They picked Clark up on their way through. While at the hospital they saw many of people from our long stay over the summer including Marie, Susan, Dr. Schwartz, and Dr. Hudson.

Friday, May 7, 2010

Super Clark on KSL

Man denied transplant because of insurance cap policy
May 6th, 2010 @ 6:14pm By John Daley

SARATOGA SPRINGS -- Friends and family are getting organized to help a man from Saratoga Springs who is afflicted with a rare disease.

His situation is complicated by the fact he's maxed out on his lifetime insurance coverage, and he isn't sure Medicaid will cover much-needed bone marrow treatment.

Many employers place a cap on lifetime insurance coverage. But what happens if you get sick and your costs exceed that number?

Clark Kimble had a good job, with insurance, with a cell tower construction company. Then last summer he came down with a rare virus and needed a life-saving liver transplant and multiple surgeries.

The cost exceeded his lifetime insurance limit.

"Humana, you know, they've been great, but there's a $2 million lifetime max with my transplants," Kimble said. "I've had 18 surgeries, all the transfusions."

Humana couldn't officially discuss Kimble's case, but said, "Depending on the product an employer purchases from Humana, an insurance policy may have a maximum lifetime benefit."

Now on Medicaid, Kimble needs a bone marrow transplant. He says he's been denied twice by Medicaid because it's considered a risky procedure.

"There's no price on life, is what I keep saying. That's what everyone says. But it's like, how can they say you're 24, you have a life ahead of you still. It's very frustrating," Kimble said.

The state agency that determines eligibility says Kimble missed a deadline to apply for social security disability, which is needed to pay for further treatment.

"He has until the end of the month that he can go visit social security, apply for the disability benefit and provide verification," said Dave Lewis, communications director of the Utah Department of Workforce Services. "We can reopen the case, no loss in coverage."

In the meantime, family and friends are rallying around the guy they call Super Clark, putting up a blog, raising money and urging Medicaid to cover the bone marrow procedure.

Kimble's sister Kristin Purles said, "We get e-mails and comments on the blog and texts and phone calls regularly saying how much he has changed people's lives, and they don't even know him personally."

Federal health reform will get rid of that lifetime limit. Kimble and his family are appealing Medicaid's decision. They say his whole medical team will be making the case on his behalf for the bone marrow transplant at a hearing next week.

Thursday, May 6, 2010

Super Clark in the News - KSL 6:00 PM MST

KSL is doing story on Clark and his situation tonight on KSL Channel 5. KSL will run the story on the 6:00 evening news. Don't miss it. If you don't have access to the channel, we'll post some video for all to see. Thanks for the support.

Wednesday, May 5, 2010

Pain, Pain Go Away . . .

. . . Come again NEVER!

This has been a tough week for Clark. He said he has been in the most pain he's had since he got out of the hospital. His incision has been hurting a lot, he's recovering from the bone marrow biopsy, and he has severe pain in his arm at the site of his line. Any one of these would be tough to deal with but all three together is unmanageable. But like a super hero, Clark is managing . . . without pain meds. For the first time, I saw Clark break down. He cried and told me that he's sick of this lifestyle and hates that he can't do anything or go anywhere without getting diseases. I told him that anyone would be fed up with it by now, especially when there's no end in sight. It has to be a lot to deal with.

We spent the day between the Huntsman and the U today. His doctors are doing all the preliminary testing they can to prepare for the BMT. Last week he had an echo, EKG, Pulmonary function test, and a bone marrow biopsy. They want to keep all their information up to date as they are building a case for the Medicaid trial so he often meets with his doctors for updates. Today they took an ultrasound of his picc line and found a blood clot which is causing all the pain and numbness. They removed the line and put it in the other arm. Hopefully he will find some relief.

Clark receiving his IVs in the car on our drive up to the Huntsman. Once again, our very high tech medical equipment and techniques are at work.

Keeping the kids entertained for hours on end can be a challenge. We were thankful to find books and toys in one waiting room.

The site of Clark's previous picc line. It is discolored, swollen, and hard to the touch. As well as so painful that Clark cannot use or even move his arm, and it often causes him to be nauseated.

All better! And so pretty!

Sunday, May 2, 2010

B-E A-G-G-R-E-S-S-I-V-E!

"Be aggressive
Got to be aggressive
B-E A-G-G-R-E-S-S-I-V-E"

This cheer that I used to do back in the day (yes I was a cheerleader once upon a time) has come to my mind every time I hung up the phone today, talking with one more person about what we can do, and that has been a lot of times. Many people are on the move, on the phone, and on the net trying to get this tree shakin'. We cannot sit idly by and do nothing. Clark got a letter in the mail that said his hearing for the Medicaid appeal is scheduled for May 13. This is already an answer to prayer as we were originally told it would be a whole month away. In the meantime, letters have been written to send to congressmen, TV and radio stations, and many others. Good Morning America has a Living the Dream contest to which many entries were submitted on Clark's behalf. KSFY and KeloLand in South Dakota, Bill Gephardt and KSL of Utah, and many congressmen already have or plan to be notified. Hopefully this gets some attention, and some action.

A powerful, beautiful letter was written by a member of Clark's singles ward. Please click here to read it, and if you choose to, you can also print it and send it to whomever you think could help.

To Senator Orrin G. Hatch: