VinsBalticBlueS2

First I wanted to say thanks to those of you who have posted support messages and sent me emails.

I wanted to give everyone an update.

Lot's of new information and diagnoses.

Cooper does not actually have acute leukemia caused by cancer. However he does had what is known as chronic lympocytic leukemia. We have found many unique and alarming pieces of information in the last week.

Apparently Cooper was born with an extremely rare genetic disorder known as Mosaic Trisomy(we are waiting to find out which chromosome is involved). Related to this disorder Cooper was born with numerous slight deformities. Many of these were diagnosed and if needed were surgically corrected within the last 5 years. Other abnormalities we just left alone because they were not problematic individually. However last week we learned that Cooper was also born with many internal malformations.. ie. liver, kidneys, intestine, esophagous, and heart. He was also oddly enough born without a gallbladder.

Due to the seriousness of the Leukemia diagnosis, and the very rare occurance of a missing gallbladder the doctors reviewed his complete medical file and started to put the pieces together. We are now busy meeting with doctors, completing more tests and planning surgeries that will correct existing dangers, and hopefully head off future potential problems. There is hope that correcting issues in his liver and kidneys(if possible) will in turn curtail the bone marrows production of the lymphocytes. I don't really understand it all yet. But essentially, we're looking at all of our options and will aggressively fight the dangers.

In the meantime, Cooper is still smiling, still essentially oblivious to the realities of all this. He's sitting here next to me actually watching the original Star Wars... his fav movie.

Thanks again for all of your well wishes & prayers.

I will occasionally update you as more information comes. In addition I'm going to get up here on Rennlist from time to time to divert from the stress of this. In fact.. I got my dash cover from Rob at the 928 leather shop and will be tackling the installation of the new dash once it's back from the local interior shop! Hope I don't screw that up too bad!

Best,

Tim

Pcar944

Thanks for the update. I'm just so sorry you guys are having to go through this. Hang in there and know that your online porsche community is rooting for you.

And we're waiting to see pics of that leather dash as well. I just noticed the first little spider of a crack appearing around one of the vents on my '86.

-mike
___________
1986 944 Red
1988 944 Blue

Rock

Thats our little champion. Still smiling, still fighting strong. What a good kid!

Best wishes to your family, and our little hero Cooper!

75ohm

Thanks for the update - we are carrying him with us.

V2Rocket

IIRC from biology, the gall bladder isn't a completely necessary organ unless you eat treebark and similar stuff. As for the other internals, I hope everything works out alright. He's a strong kid and with some guidance can pull through this, and he'll be a better person for it.

VinsBalticBlueS2

Thanks V2. Not having a Gallbladder indeed isn't a big deal(although extremely rare). It's the 'reason' that he was born without a gallbladder that's the concern. He received extra chomosomal information while forming in the womb. Being born without a gallbladder was just one of the quirks that resulted. The defects in his heart and intestine will all require corrective surgery of varying degrees of complexity. In addition he will most likely face a liver transplant in the coming years. The key will be pulling through the surgeries with flying colors, and then being strong enough for the transplant.

Best,

Tim

VinsBalticBlueS2

Meant to say that being born without a gallbladder is extremely rare... Not having one is very common obviously because people get them removed all the time. Oops.

jaje

Tim,

My family sends all our hopes and prayers for your son. I have a 5 year old boy and always worry about him.

Joel

SD Porsche Fan

Wow, it seems like you guys are going through a diagnostic roller coaster. My thoughts and prayers are with all of you. Keep us updated.

500

What a nice looking son you have there Tim.

Although it is daunting to think about all the challenges that lie ahead, at least there are many actions/procedures which can be taken and I really wish for the best for you and your son.

I have a six-year-old son and can only imagine what a challenge this must be.

iamgod

my son will be 5 this year we'll pray for at bedtime tonight...goodluck, godbless

Tom R.

The weekend my buddy had his colon taken out I upholstered the seats I bought for the firebird.

When doing that job I learned why people knit. It was excellent therapy for me, and hopefully will be excellent therapy for you. Just dont put too much thought into the job, let it flow. The whole idea is to take your mind away from anything that needs thought.

Good luck with the little man. As the proud parent of a beutiful four year old girl, I look forward in a dozen or so years to telling him about my collection of shovels, my big back yard, and....

Dynamite 76

My thoughts are with you, family and Cooper

azbanks

Hey Tim,

Two years ago my son Nathan was diagnosed with mild/moderate autism. He was three at the time. I suddenly realized how many ideas I had about what a normal and happy life he would have. I learned about those ideas because they vanished when Nathan was diagnosed and my heart stopped. Autism is bad and can be really bad but it is not leukemia. They are both recoverable. Cooper looks like a strong kid. My heart and prayers go to you, Cooper and your whole family. If I can offer you any encouragement, it has been almost two years and my son has almost completely recovered. He is going into a normal kindergarten class next year and the school psychologist at his new school didn't believe he had autism. I pray Cooper recovers as quickly and as well. I'll PM you some info later that I've learned in dealing with autism.

KLR

My prayers are with you and your son as well. I can imagine that it's not much of a silver lining, but the CLL diagnosis is a very good break vs. an AML diagnosis.