Alembic Guitars Club
Connecting => Miscellaneous => Topic started by: pauldo on April 26, 2014, 05:25:58 AM
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Some of you are familiar with my nephew Isaac from this post:
http://club.alembic.com/Images/449/168366.html (http://club.alembic.com/index.php?topic=16873)
I don't believe I mentioned in that original post that besides being a brilliant human being Isaac also has Acute Lymphoblastic Leukemia. He has knocked it into remission twice already.
Well the bitch is back and he is facing cancer again for the third time in his short 12 years on earth. Last time the treatments started to take a toll on some of his vital organs.
My heart is weighted with this news and am struggling to raise it up high - to be strong. My brother and his family have a giant support system in place, but it does little to ease the bumps on the road that they travel down . . . again.
We REALLY would appreciate any love, prayers, positive thoughts, good juju, etc. that can be put out for him and his family.
Thanks.
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I'm here bro!
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Praying for complete & permanent healing for Isaac & for strength for the family to get through this!
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((((((((((((((( For you and yours Paul )))))))))))))))
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Prayers and healing for Isaac. Such heavy burden for such a young man.
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My prayers and thoughts are with Isaac and strength for all of you who love and support him.
Ed
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Thanks everyone.
Tough times indeed.
I believe in the power and strength of numbers. I know there are a lot of kind people here and the energy that you all put forth (both seen and unseen) will do nothing but good.
:-D
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My thoughts and prayers are with you and your family. Remain strong for Isaac!
Regards,
Pete
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Healing vibes sent
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Love and prayers for Isaac, from this side of the big pond. Best healing energies!
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Prayers, love, and rich healing blessings to Isaac.
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Nothing but love and good vibes from Colorado!!!!
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My son 32 yo son has lympho-leukemia and is currently in remission only for the docs to find him with Creutzfeldt-Jakob disease which is always fatal with no known treatment. I feel for you and others that suffer with these terrible diseases and their loved ones that can only stand by and watch them deteriorate. We are not supposed to outlive our yunguns.
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Prayers and love go out from my family to your family. Particularly young Isaac.
May you have:
A world of wishes at your command.
God and his angels close to hand.
Friends and family their love impart,
and Alembic brothers' blessings in your heart!
slawie
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Pauldo,
Praying for Peace and healing for Isaac, You and your Family.
Perfect sentiments Slawie.
Pete
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Sending healing energy.
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Good wishes and positive vibes for a full recovery. May Isaac be playing drums for many years to come.
Bill, tgo
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Prayers and thoughts for Isaac and your family, Paul. Best wishes for a speedy and complete recovery, and comfort to you and yours.
Rob
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You have my prayers Paul and so do you Thomas. I know it sometimes feels a bit strange asking strangers for their love but I know from my own experience a year or so ago that reading the messages of love and hope on our forum does help.
graeme
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Positive thoughts and healing vibes sent from AZ.
Isaac has whipped it twice already and he can do it again.
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Thinking of you and your family.
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What Graeme said. It's real.
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Paul,
Prayers lifted for Isaac, your brother's family, and you and yours.
Mike
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Sincere thanks to everyone - we truly appreciate it and believe in the power of many.
Please give up some fresh vibes, thoughts and prayers.
Given that this is Isaac's third time around they have opted for the T-cell modification treatment. . . Kinda scary to this lay man, but potentially superior results.
About 6 weeks before his T-cells are ready.
Will update.
Thank you all.
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More prayers sent up for Isaac's healing & for the family to endure the wait for the T cells to be ready.
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Update:
Isaac's T-Cells are sitting in a freezer at CHOP (Children's Hospital of Philadelphia) untouched awaiting for some suit to change current practices. Apparently Wisconsin's legislators have decided that they can not support treatments out of state (Isaac qualifies for state medical assistance). At this time there is not enough money to keep the ball rolling and CHOP is the facility that is THE place for T-Cell modification treatment.
Please keep the thoughts and prayers coming, not only for this new snafu but also for Isaac and his family - in particular my brother; he is feeling like Atlas right now and seeing him carry this burden frightens me.
(Message edited by pauldo on May 15, 2014)
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Is there any way that a petition to legislators can be started?
Our extended support network may be able to provide some signatures to help the cause.
In the meantime prayers and positive thoughts are being radiated out to Isaac and all those who love him.
slawie
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Slawie,
Thanks for the support.
Right now my brother has a lawyer who is connected and working through appropriate channels that hopefully will reveal a resolution.
Your idea is a sound one. Others have suggested contacting the media and making this more 'public'; however at this time my brother wishes to keep this out of the media and public forum. I respect his families wishes - although getting something like this in the media would certainly put the politicians in a position to react quickly.
thanks again!
P.S. - I understand that this area is public, but I like to think of it more as Family. - love you guys! :-D
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No worries I understand.
I am a member of Change.org. It's a place to put up petitions
That folks can sign.
If it ever comes to the time where the notion of an online petition is required let me know and I will be onto it.
In the mean time all love and respect to your family from my family
slawie
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You guys did good!
Isaac's parents had a hearing scheduled for today to get funding.
Apparently the state decided that it would be OK to allow Isaac to have this treatment - they actually cancelled the hearing before it even started!
I'm guessing the fact that Meg Gaines was their council made them reconsider.
Here is some background on her:
http://www.bravamagazine.com/BRAVAMagazine/0512MegGaines.aspx (http://www.bravamagazine.com/BRAVAMagazine/0512MegGaines.aspx)
Thanks again for the positive thoughts, prayers and good ju-ju!
Isaac's T-cell modification therapy is back on schedule. Will update as it unfolds.
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Wonderful!
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Excellent update, Pauldo.
I'll continue praying for Issac's recovery.
Mike
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That has made my week!
Great news.
Please continue with the updates.
slawie
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Hey Paul, just caught up w this thead, and I hope things are moving forward and towards the positive for Issac... I don't know about Wis. politicians, but in my state, even the worst opponents are steamrolled when it comes to a situation like this.... So... All the best.... My thoughts and prayers are with you and Issac....
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Glad the health of a child won out over politics! Thank God he can get the treatment he needs now!
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Paul -
Just found this. More prayers for Issac and your brother's family from Texas.
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Thanks John,
Quick update; Isaac is still on schedule for the T-cell treatment. There is a 6 week 'process' time before he will be ready for treatment.
Spoke with my brother today and he said that the chemo treatments are kicking Isaac's butt, he can hardly walk upstairs - but true to form for a blessed individual as he; Isaac keeps on smiling (and sleeping a lot).
Thanks again to everyone!
I believe that a community of kind hearts and love can move a mountain!
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I'm sending thoughts of healing, strength, and love.
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Healing vibes for Issac; he's too young to have to go through this...my bandmate (and co-worker's) wife has lung cancer into lymph nodes and maybe the spine as well(she has ankylosing spondylosis so the spine growth may be that)...if the spine is cancer, she's toast, otherwise she may live...I feel so lucky I caught my Melanoma early...Tony
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My brother shared this with me - coolest B-Day message EVER!
Children are sooo much wiser than we give them credit for.
(http://club.alembic.com/Images/449/193631.jpg)
As mentioned before Isaac is still waiting for the schedule at CHOP to be ready for him.
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That is indeed a cool birthday message.
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What a great birthday letter!
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ditto... beautiful!
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ISaac went to Philly for preliminary work.
He should be scheduled for the 'real deal' around September.
Here he is at the Philly Zoo:
(http://club.alembic.com/Images/449/194485.jpg)
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All the best to Issac and your family. My thoughts and prayers are with you all.
Mike
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The best thing is WHEN he beats this he's gonna grow up to be an amazing guy/Dad/whatever...he will have perspective on things that a lot of us wish we had, but gladly don't, if ya know what I mean...Tony
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Latest update:
Isaac is going in for the T-Cell infusion therapy on September 2nd.
My brother revealed to me last weekend, that Isaac is the first child with Downs Syndrome to have this done. I guess we will find out if having an extra chromosone makes a difference.
Meanwhile - Isaac found himself on stage again . . .
:-D
(http://club.alembic.com/Images/449/195902.jpg)
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I will be adding to the prayer pool this weekend. He seems at home behind the kit. Bang away young man!
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He doesn't look like Down's syndrome...he looks like a really young Phil Collins with a shaved head, especially behind the kit...Healing vibes sent! Tony
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He doesn't look like Down's syndrome...he looks like a really young Phil Collins with a shaved head, especially behind the kit...actually, he just looks like a kid being as happy as possible given the circumstances, which we could all learn from...Healing vibes sent! Tony
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Last Tuesday Mt. Horeb had a special 'going to get better' party for Isaac. The community raised an incredible amount of money to help my brother and his family - it warms my heart and makes my eyes teary to be able to observe REAL humanity in action.
Isaac and his mom and dad are in Philly now; they will be there for 6 weeks. Family is gathering to stop in and check on their teenage boys who have the run of the house!
Meanwhile Isaac got behind the drums again.
If he keeps looking so joyful behind that set I might have to switch instruments - obviously there is something good going on there!
(http://club.alembic.com/Images/449/197266.jpg)
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Hey Paul, I'm here in Philly so if your brother and his family need anything please just let me know. I can at least cook them a nice home cooked meal and have them hang out at my house, whatever.
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He looks so joyful playing drums; hopefully he can have a long career spreading that joy from a drum seat...we make fun of drummers but I often think it's from jealousy really; drums are the pulse and the spine at once, bass can also be the pulse( and maybe the blood pressure?!) but if the drums be lacking, it all is lacking...Tony
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Ken - that is very generous, I sent you an e-mail.
Here is the itinerary for Isaac's upcoming events. Throw some well thoughts in the air for the boy!
Monday (today): Isaac starts chemo to reduce his T-cell numbers, to make room for the engineered T-cells. He will have chemo during several days the 1st week, along with a lot of outpatient pre/tests. After Labor day he will have a sedation, bone marrow sampling, and blood work on Tuesday, and will start his re-infusion of engineered T-Cells on Sept 3rd, if things go as planned.
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Thanks for the itinerary. Will send healing energy.
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Video release of Isaac's drumming skills:
https://youtube.com/watch?feature=youtu.be&v=TeP4uK_raog (https://youtube.com/watch?feature=youtu.be&v=TeP4uK_raog)
If anyone has the ability to capture the video from the links and convert them to a wmv/ mov or similar format it would be greatly appreciated.
Thanks - next week Isaac will need a little extra love.
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Isaac's life and the spirit that surrounds him gives more to others than he potentially receives.
This child, this amazing child is a tsunami of Love.
Peace and Prayers to all,
Pete
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Props to everyone who has given the healing thoughts and prayers.
Isaac had his T-cell infusion on Sept. 4th, and so far other than some tiredness he is doing very well!
Thank YOU!
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Good to hear; and thank you!
(Message edited by davehouck on September 14, 2014)
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great news paul.
Graeme
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Wonderful news Paul! Continued prayers for a complete healing!
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Yay!! Hooray!
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That's wonderful news Pauldo. The Prayers will continue for the amazing Isaac! I will now go to sleep with a smile on my face.
Peace my Brother,
Pete
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New year, new challenges; was hoping to not get back to this thread.
Requesting to lean on the good people here again for some positive thoughts, prayers and well wishes.
Isaac is going to have a bone marrow transplant. Fortunately Isaac's dad ( my brother) scored an 8 out 8 for a blood match, I do not fully understand this, but it means that he is a great match for being a donor.
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Sending love and positivity Pauldo.
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Paul I'm praying not only that the marrow transplant goes well, but that Isaac will be completely healed & live a normal life free from all these challenges he has been facing. I believe that God still heals & I'm praying for a miracle for Isaac.
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I was hoping you got back to this thread for a different reason. Okay, well healing thoughts and prayers headed their way.
I will throw a gigantic healing bubble to Isaac!
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Healing energy sent.
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Many healing thoughts and Prayers.
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Healing energy from Vancouver too...crap, kids aren't supposed to go through that much crap; that's supposed to be for adulthood...
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And Healing Energy from Caracas
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Lots of love and healing from Boulder! Xander is thinking about him growing up and playing drums for a long time!
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Sending positive vibes from Britain Paul. Fingers crossed the bone marrow transplant turns out ok.
Graeme
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I will add my prayers to those already sent by our brethren. Praying for full recovery and healing for Isaac.
Mike
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Paul, we'll be with Isaac on our minds, thoughts and hearts. Positive vibes for him from Brazil
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Bumping this.
It has been two years since the bone marrow transplant for Isaac. He is doing GREAT!
Thank YOU!
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Great news, Paul!
Biil, tgo
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Good to hear; thanks for the update!
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Awesome news!
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This thread pre-dates my time here Paul, but I have followed along. This is very good news. :)
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That's great to hear, Paul!
John