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pauldo
Senior Member
Username: pauldo

Post Number: 1137
Registered: 6-2006
Posted on Saturday, April 26, 2014 - 5:25 am:   Edit Post

Some of you are familiar with my nephew Isaac from this post:
http://alembic.com/club/messages/449/168366.html

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.
serialnumber12
Senior Member
Username: serialnumber12

Post Number: 1078
Registered: 12-2004
Posted on Saturday, April 26, 2014 - 5:31 am:   Edit Post

I'm here bro!
rustyg61
Senior Member
Username: rustyg61

Post Number: 1213
Registered: 2-2011
Posted on Saturday, April 26, 2014 - 5:38 am:   Edit Post

Praying for complete & permanent healing for Isaac & for strength for the family to get through this!
artswork99
Moderator
Username: artswork99

Post Number: 1979
Registered: 7-2007
Posted on Saturday, April 26, 2014 - 7:58 am:   Edit Post

((((((((((((((( For you and yours Paul )))))))))))))))
edwin
Senior Member
Username: edwin

Post Number: 1750
Registered: 5-2002
Posted on Saturday, April 26, 2014 - 2:57 pm:   Edit Post

Prayers and healing for Isaac. Such heavy burden for such a young man.
ed_too
Junior
Username: ed_too

Post Number: 20
Registered: 3-2011
Posted on Saturday, April 26, 2014 - 4:36 pm:   Edit Post

My prayers and thoughts are with Isaac and strength for all of you who love and support him.

Ed
pauldo
Senior Member
Username: pauldo

Post Number: 1138
Registered: 6-2006
Posted on Saturday, April 26, 2014 - 9:49 pm:   Edit Post

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
kilowatt
Intermediate Member
Username: kilowatt

Post Number: 135
Registered: 12-2004
Posted on Sunday, April 27, 2014 - 4:45 am:   Edit Post

My thoughts and prayers are with you and your family. Remain strong for Isaac!

Regards,
Pete
sonicus
Senior Member
Username: sonicus

Post Number: 3342
Registered: 5-2009
Posted on Sunday, April 27, 2014 - 7:40 am:   Edit Post

Healing vibes sent <{((((((((
jcdlc72
Advanced Member
Username: jcdlc72

Post Number: 328
Registered: 11-2009
Posted on Sunday, April 27, 2014 - 9:31 am:   Edit Post

Love and prayers for Isaac, from this side of the big pond. Best healing energies!
moongerm
New
Username: moongerm

Post Number: 10
Registered: 8-2013
Posted on Sunday, April 27, 2014 - 1:30 pm:   Edit Post

Prayers, love, and rich healing blessings to Isaac.
smokinbear
Intermediate Member
Username: smokinbear

Post Number: 194
Registered: 11-2008
Posted on Sunday, April 27, 2014 - 2:35 pm:   Edit Post

Nothing but love and good vibes from Colorado!!!!
5sicks
Junior
Username: 5sicks

Post Number: 43
Registered: 8-2010
Posted on Sunday, April 27, 2014 - 2:48 pm:   Edit Post

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.
slawie
Senior Member
Username: slawie

Post Number: 614
Registered: 8-2002
Posted on Sunday, April 27, 2014 - 3:02 pm:   Edit Post

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
flpete1uw
Advanced Member
Username: flpete1uw

Post Number: 296
Registered: 11-2011
Posted on Sunday, April 27, 2014 - 4:38 pm:   Edit Post

Pauldo,
Praying for Peace and healing for Isaac, You and your Family.

Perfect sentiments Slawie.

Pete
davehouck
Moderator
Username: davehouck

Post Number: 11317
Registered: 5-2002
Posted on Sunday, April 27, 2014 - 6:29 pm:   Edit Post

Sending healing energy.
lbpesq
Senior Member
Username: lbpesq

Post Number: 5731
Registered: 7-2004
Posted on Sunday, April 27, 2014 - 7:00 pm:   Edit Post

Good wishes and positive vibes for a full recovery. May Isaac be playing drums for many years to come.

Bill, tgo
dead_head
Junior
Username: dead_head

Post Number: 47
Registered: 12-2013
Posted on Sunday, April 27, 2014 - 9:06 pm:   Edit Post

Prayers and thoughts for Isaac and your family, Paul. Best wishes for a speedy and complete recovery, and comfort to you and yours.

Rob
jacko
Senior Member
Username: jacko

Post Number: 3525
Registered: 10-2002
Posted on Monday, April 28, 2014 - 5:03 am:   Edit Post

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
5a_quilt_top
Advanced Member
Username: 5a_quilt_top

Post Number: 294
Registered: 6-2012
Posted on Monday, April 28, 2014 - 8:58 am:   Edit Post

Positive thoughts and healing vibes sent from AZ.

Isaac has whipped it twice already and he can do it again.
jalevinemd
Senior Member
Username: jalevinemd

Post Number: 934
Registered: 12-2003
Posted on Monday, April 28, 2014 - 9:24 am:   Edit Post

Thinking of you and your family.
edwin
Senior Member
Username: edwin

Post Number: 1752
Registered: 5-2002
Posted on Monday, April 28, 2014 - 12:18 pm:   Edit Post

What Graeme said. It's real.
groovelines
Senior Member
Username: groovelines

Post Number: 766
Registered: 4-2003
Posted on Monday, April 28, 2014 - 7:49 pm:   Edit Post

Paul,

Prayers lifted for Isaac, your brother's family, and you and yours.

Mike
pauldo
Senior Member
Username: pauldo

Post Number: 1141
Registered: 6-2006
Posted on Monday, May 05, 2014 - 4:22 pm:   Edit Post

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.
rustyg61
Senior Member
Username: rustyg61

Post Number: 1219
Registered: 2-2011
Posted on Monday, May 05, 2014 - 6:17 pm:   Edit Post

More prayers sent up for Isaac's healing & for the family to endure the wait for the T cells to be ready.
pauldo
Senior Member
Username: pauldo

Post Number: 1153
Registered: 6-2006
Posted on Thursday, May 15, 2014 - 2:48 pm:   Edit Post

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)
slawie
Senior Member
Username: slawie

Post Number: 626
Registered: 8-2002
Posted on Thursday, May 15, 2014 - 4:12 pm:   Edit Post

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
pauldo
Senior Member
Username: pauldo

Post Number: 1154
Registered: 6-2006
Posted on Friday, May 16, 2014 - 11:36 am:   Edit Post

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
slawie
Senior Member
Username: slawie

Post Number: 627
Registered: 8-2002
Posted on Friday, May 16, 2014 - 7:44 pm:   Edit Post

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
pauldo
Senior Member
Username: pauldo

Post Number: 1159
Registered: 6-2006
Posted on Tuesday, May 20, 2014 - 8:46 am:   Edit Post

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

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.
artswork99
Moderator
Username: artswork99

Post Number: 1984
Registered: 7-2007
Posted on Tuesday, May 20, 2014 - 9:02 am:   Edit Post

Wonderful!
dadabass2001
Senior Member
Username: dadabass2001

Post Number: 1796
Registered: 6-2002
Posted on Tuesday, May 20, 2014 - 1:12 pm:   Edit Post

Excellent update, Pauldo.
I'll continue praying for Issac's recovery.
Mike
slawie
Senior Member
Username: slawie

Post Number: 630
Registered: 8-2002
Posted on Tuesday, May 20, 2014 - 2:44 pm:   Edit Post

That has made my week!
Great news.
Please continue with the updates.
slawie
pace
Senior Member
Username: pace

Post Number: 1015
Registered: 4-2004
Posted on Tuesday, May 20, 2014 - 7:38 pm:   Edit Post

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....
rustyg61
Senior Member
Username: rustyg61

Post Number: 1234
Registered: 2-2011
Posted on Tuesday, May 20, 2014 - 9:28 pm:   Edit Post

Glad the health of a child won out over politics! Thank God he can get the treatment he needs now!
smuprof
Advanced Member
Username: smuprof

Post Number: 235
Registered: 12-2003
Posted on Monday, June 02, 2014 - 7:10 pm:   Edit Post

Paul -

Just found this. More prayers for Issac and your brother's family from Texas.
pauldo
Senior Member
Username: pauldo

Post Number: 1174
Registered: 6-2006
Posted on Monday, June 02, 2014 - 7:20 pm:   Edit Post

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!
moonliner
Advanced Member
Username: moonliner

Post Number: 236
Registered: 12-2004
Posted on Monday, June 02, 2014 - 7:59 pm:   Edit Post

I'm sending thoughts of healing, strength, and love.
peoplechipper
Senior Member
Username: peoplechipper

Post Number: 415
Registered: 2-2009
Posted on Wednesday, June 04, 2014 - 11:39 pm:   Edit Post

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
pauldo
Senior Member
Username: pauldo

Post Number: 1182
Registered: 6-2006
Posted on Tuesday, June 10, 2014 - 12:42 pm:   Edit Post

My brother shared this with me - coolest B-Day message EVER!

Children are sooo much wiser than we give them credit for.

Lydia's B-day message for Isaac


As mentioned before Isaac is still waiting for the schedule at CHOP to be ready for him.
davehouck
Moderator
Username: davehouck

Post Number: 11353
Registered: 5-2002
Posted on Tuesday, June 10, 2014 - 4:37 pm:   Edit Post

That is indeed a cool birthday message.
edwin
Senior Member
Username: edwin

Post Number: 1786
Registered: 5-2002
Posted on Tuesday, June 10, 2014 - 6:55 pm:   Edit Post

What a great birthday letter!
artswork99
Moderator
Username: artswork99

Post Number: 1990
Registered: 7-2007
Posted on Wednesday, June 11, 2014 - 7:47 am:   Edit Post

ditto... beautiful!
pauldo
Senior Member
Username: pauldo

Post Number: 1204
Registered: 6-2006
Posted on Thursday, July 03, 2014 - 3:19 pm:   Edit Post

ISaac went to Philly for preliminary work.
He should be scheduled for the 'real deal' around September.

Here he is at the Philly Zoo:
Isaac at the Philly Zoo
dadabass2001
Senior Member
Username: dadabass2001

Post Number: 1801
Registered: 6-2002
Posted on Thursday, July 03, 2014 - 4:31 pm:   Edit Post

All the best to Issac and your family. My thoughts and prayers are with you all.
Mike
davehouck
Moderator
Username: davehouck

Post Number: 11405
Registered: 5-2002
Posted on Thursday, July 03, 2014 - 4:52 pm:   Edit Post

:-)
peoplechipper
Senior Member
Username: peoplechipper

Post Number: 444
Registered: 2-2009
Posted on Thursday, July 03, 2014 - 11:30 pm:   Edit Post

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
pauldo
Senior Member
Username: pauldo

Post Number: 1230
Registered: 6-2006
Posted on Friday, August 01, 2014 - 8:02 am:   Edit Post

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

Isaac Drumming
tubeperson
Senior Member
Username: tubeperson

Post Number: 483
Registered: 5-2005
Posted on Friday, August 01, 2014 - 8:06 am:   Edit Post

I will be adding to the prayer pool this weekend. He seems at home behind the kit. Bang away young man!
peoplechipper
Senior Member
Username: peoplechipper

Post Number: 462
Registered: 2-2009
Posted on Friday, August 01, 2014 - 10:49 pm:   Edit Post

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
peoplechipper
Senior Member
Username: peoplechipper

Post Number: 463
Registered: 2-2009
Posted on Friday, August 01, 2014 - 10:52 pm:   Edit Post

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
pauldo
Senior Member
Username: pauldo

Post Number: 1243
Registered: 6-2006
Posted on Sunday, August 24, 2014 - 2:54 pm:   Edit Post

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!

The Joy of Drumming
wfmandmusic
Intermediate Member
Username: wfmandmusic

Post Number: 105
Registered: 1-2012
Posted on Sunday, August 24, 2014 - 7:15 pm:   Edit Post

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.
peoplechipper
Senior Member
Username: peoplechipper

Post Number: 475
Registered: 2-2009
Posted on Monday, August 25, 2014 - 12:35 am:   Edit Post

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
pauldo
Senior Member
Username: pauldo

Post Number: 1244
Registered: 6-2006
Posted on Monday, August 25, 2014 - 9:17 am:   Edit Post

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.
davehouck
Moderator
Username: davehouck

Post Number: 11466
Registered: 5-2002
Posted on Monday, August 25, 2014 - 10:15 am:   Edit Post

Thanks for the itinerary. Will send healing energy.

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