posted March 30, 2012 10:46 PM            

I received an outpouring of support for my son's hospitalization, and I am writing to show gratitude for the care and support that has been bestowed.

This thread is to honor everyone, but especially those who have taken the time to write to me.

What Happened

I have a chronically ill 16 year old son named Mitchell. He was in the hospital for two days last week for what was a routine surgical procedure. And then he contracted a bacterial infection called Clostridium Difficile (aka C Diff). We went back to the ER, and then the ICU and then regular transplant ward. We were in the hospital a further five nights. During this time, Mitchell was obviously rather sick, being both a renal and liver transplant patient and also a patient of seven other medical specialties. Meanwhile, I didn't miss a single day of work, traveling three hours a day to and fro from New Haven, CT to New York City (80 miles by train each way) everyday. But this isn't about me, and I am well equipped to handle such aggravation.

We have arrived home now. However, this is not the end. The Acute Issue is over. The Chronic Issue persists and is as complicated as ever. There isn't such a thing as recovery. There is no getting better. The Chronic Issues can only get a lot worse until they are eventually addressed.

The History

Mitchell has a very rare autosomal recessive disease that affects his kidneys, his liver, his spleen, his portal veins, his esophagus, his stomach, his bile ducts, his endocrine organs, and by extension, his lungs, his heart and his brain.

Mitchell had a successful living donor kidney transplant as a nine month old baby, and my wife donated her right kidney. Both of Mitchell's kidneys were vestigial organs and were removed in a nephrectomy. He also had manyother surgeries. As a baby, he had more than 100 grammal seizures. A transplanted kidney is supposed to last 5 years, and that is considered a success. Mitchell has already beaten the odds three times over, and his kidney still remains functional although chronically deteriorating at a slow pace.

My wife and I are highly unusual genetic carriers of not only the same recessive genetic disease, but the exact same precise genetic marker in chromosome number 6. If you remember your biology, there are 22 pairs of somatic chromosomes (aka non-sex chromosomes or autsomes) and two sets of sex chromosomes, for a total of 46 chromosomes. The incidence of this occurence in a Caucasian of Western Europen descent is 1-in-110,000 and the incidence for a East Asian is 1-in-150,000. That does not mean that the disease is the sum of the two probabilities, but that is how rare that two people of completely different ethnicities from opposite sides of the Earth have the same precise genetic marker. The incidence of the disease in North America is about 1-in-50,000 births.

Mitchell is our second child. We lost our eldest daughter to the same disease through a live birth but a death soon after, and we lost our younger daugher to a still birth after having being afflicted in utero. It was not a miscarriage. She was still born. Our youngest child, a son, is fully health, being neither affected nor a genetic carrier.

The Prognosis

Mitchell needs: (1) a liver transplant, (2) a kidney transplant, (3) a bone marrow transplant,(4) shunts to divert blood flow to reduce portal hypertension and reduce splenomegaly (enlarged spleen, which is very dangerous).

Bone marrow is technically not an organ transplant, so he needs two organs and has been placed on the national cadaver donor list. The waiting period could be anywhere between one month to three years. Thankfully, Mitchell is not direly sick, and his liver and kidney as is are projected to last at least a year or two, if not possibly five years.

However, that is the backup plan. The prefered strategy is a living donor transplant program, which definitely means one of my kidneys and a liver lobe from either myself or my wife. Naturally, I would prefer to donate both in one go and not involve my wife again. Of course, involving both parents can mean the risk of three deaths. Not to be morbid, but the probability of death is much higher in a liver donor than a liver recipient (in the order of 10% to 20%). Keep in mind that I ave a 7 year old son as well, and I am the family breadwinner. In case you didn't know, humans can lead regular lives with about 25% kidney function and the human liver regenerates within weeks.

Who Mitchell Is

Mitchell is a happy and highly successful teenager, and you would never know that he is chronically ill unless he were to lift his shirt, in which case you would see surgical scars all over his body.

Mitchell is a highly motivated fellow who is a High School Sophmore with a 3.9 GPA. He is an accomplished orchestra violinist and also a pianist. He is an equestrian rider. He is a state spelling bee champion, a graphic artist, a web site developer, a computer software beta tester, an artist, a music composer, and an avid reader. He is fluent in Spanish, French and Chinese, and he also speaks some Russian and Arabic.

[Photos deleted]

What Mitchell Wants

Like all in my family, I am proud to say that Mitchell kicks butt and takes no prisoners. He is a strong minded individual and the toughest SOB I have met physically and mentally. Nobody I have ever known even in my military days was as tough as Mitchell. He has Code Blue twice and has no fear of dying. He says that he has met God a number of times and I believe him because I have seen him on the verge of being pronouced dead, but he has never failed to come back.

Mitchell primarily likes good wishes and prayer. He wants no sympathy. In his mind, there is no time to be sorry about anything. Just time to live life to the fullest, transcend all obstacles and overcome all challenges, for strength comes through his faith in God.

posted March 31, 2012 01:24 AM            

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Passion, Lust, Desire. Check out my journal

posted March 31, 2012 05:25 AM            

I didnīt know about that, but I know you`re a strong family, and you`ll stay strong.
I`m sure even in all of this you are protected.

posted March 31, 2012 07:53 AM            

quote:

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Originally posted by lalalinda:
What a handsome young man.
We're all here for you YTA, Thanks for sharing
sending positive thoughts your way Mitchell, hope you feel better soon.

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Ian--if you want to meet the Mod of Mods--it is Lalalinda in my humble opinion.

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Passion, Lust, Desire. Check out my journal

posted March 31, 2012 07:57 AM            

Thanks so much for telling us all about what Mitchell and your family are going through. I hope that the prayers from our little community here contribute to Mitchell's healing and your safety through organ donations.

Your son is beautiful and looks very kind and intelligent! This is such a touching story...will keep on praying for you all through hard times.

!

posted March 31, 2012 08:21 AM            

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Passion, Lust, Desire. Check out my journal

posted March 31, 2012 09:16 AM            

Mitchell is certainly a hero and blessing to you and others.

posted March 31, 2012 12:29 PM            

quote:

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Originally posted by juniperb:
God Bless you and your lovely family.

Mitchell is certainly a hero and blessing to you and others.

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Well said Juni

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Passion, Lust, Desire. Check out my journal

posted March 31, 2012 12:43 PM            

The kid spent this morning, his first day home from the hospital, catching up with school and all homework. It's crazy that he wants to cover a week of school and music in one weekend, but that's him. He wants piano lesson this evening and orchestra tomorrow. He's wearing me out. . I just enjoyed cooking for him and getting all his medication sorted out, and his note cards prepared for his tests next week. At least he's going to the movies tomorrow with his beaus. Life moves on.