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!


Lisabug said...

Thanks for the update on the court hearing! I was pretty anxious to hear about it. I'm sorry you had to deal with two cold-hearted attorneys. I had to listen to a couple of those the other day when my friend's 3 little girls were taken from her. Heartbreaking when cold-hearted people have so much power! I really hope that this board sees how dumb it is to NOT cover Clark's BMT and that they give the word and it's done!!!
Meantime, I'm working with a group of 5 to try to start raising money for Clark.
Good luck and God bless you, your family, and Clark!!!

Susie (Althoff) Stroup said...

I commend you for being able to keep the mama bear in you under control. I don't know if I could have held such composure.. this is your baby's life they are talking so smug & arrogantly about. I would have wanted to scream "HE IS NOT A NUMBER, HE IS NOT A STATISTIC ON YOUR 10 TREES WORTH OF PAPER YOU LUGGED IN HERE, HE IS SITTING RIGHT HERE, LOOK AT HIM AND TELL ME HE IS NOT WORTH SAVING!" My guess is, to do a job like that you have to put a price tag on your heart. Hope the fancy house & car are worth it.

We're praying for you Clark. Hang in there. One way or another, the BMT will happen!!

Ligia said...

I almost want to start writing letters to Glenn Beck. Would I have your permission to do so on Clark's behalf? I know you guys went on KSL. I guess I figure if we make a big deal on Clark's behalf, they can't ignore his case and I really want to do something to help. If not, I understand. But I love writing. It doesn't hurt to make attempts right? Let me know if I have your permission. :o) You are all in my prayers.

The House that James Built said...

cant believe there is a debate on whether or not to TRY and save ones life. amazing. stay strong super clark!! agree- glad thoes db's aren't lulu's docs!!

NFT said...

Your recap would have made Paul Harvey proud! I hope you all hear very good news very soon.

Emily Joyner
National Foundation for Transplants

Anita said...

I was surprised his doctors didn't stay the entire time. We are all praying for you Clark - we feel like we have adopted you - if you want to divorce us you can :) Love you lots, your friends at the American Red Cross.

Mills said...

Love the Paul Harvey spin on it. What a day that must have been. I can't believe some of those doctors. I too would not want them near my hospital bed.
Someone commented...
Do these doctors/lawyers get so caught up in the politics and rules of it all that they do not see the the people behind their patient records.
You are all in my prayers......

Anonymous said...

I think it's great that you are trying to protect the physicians. I won't Dr. Hyland is an evil man and I don't know how he sleeps at night!

Andrea said...

Keeping him in my thoughts and prayers. Looking for that miracle for him and your family.