Leukemia Help

[keefe]

I pulled this from the internal dot org website at Hutch. Look into NCCN centers. But as I say, get in touch and I'll connect you with some folks at Hutch/SCCA who can provide perspective. God bless.

http://www.nccn.org/about/pdf/USNews-Ad-2011-Print.pdf

[hairy worthen]

I am Praying that you and your family get through this. There are a few posters that I always read when I see their post, you are one of those. I hope muscoop and football can be at least be some escape for you and hoping things work out.

[ChicosBailBonds]

All the best DISH to you and your little one.  Prayers up.

PM me if you wish...my wife and I have been attached to several Children's Hospitals here in So. Cal. with my daughter's diagnosis...you are in good hands.  These hospitals are amazing.

[DegenerateDish]

Any chance anyone know any pediatric oncologists at Lurie Hospital in Chicago?

[jficke13]

Prayers up.

I live in Milwaukee. If you do decide to go to Children's in Milwaukee, let me know anything I can do to be of assistance and I will from a hot meal to a place to crash.

[Coleman]

I would 2nd Lurie's in Chicago. World Class. Brand new facilities. I have had friends and family members who have had to send their kids there (not cancer - so can't speak to any specific doctors) and they can't stop talking about what a great place it has been for them. I live in the city of Chicago, let me know if there is anything I can do.

Prayers for you and your family.

[Henry Sugar]

f*ck cancer

[MU Chi_IL]

Hey Dish - I sent you a PM, I am very familiar with Lurie and the staff.  If you are up for it, give me a ring.

[CTWarrior]

My thoughts and prayers are with you and your family MUDish.

FWIW, one of my best friends from my time at MU is now a professor and cancer researcher at the University of Colorado in Boulder.  Like others in this thread, he says Lurie's Children's Hospital of Chicago is the best in the area.  He also says though he obviously doesn't know the particulars of your son's case, the good news that most childhood leukemias have become very treatable.  So have faith.  Best of luck.

[keefe]

Any chance anyone know any pediatric oncologists at Lurie Hospital in Chicago?

Dish

I brought this up after a meeting today with a colleague from Hutch who said he has collaborated extensively in leukemia research with a pediatric oncologist at University of Chicago. You can speak with my colleague and he can refer you to the doc at UC. My colleague did say that you have two critical deliverables: Get a second opinion immediately and start reviewing family history. Obviously, there is a lot of genetic detail not relevant here but he suggested the challenge will be in identifying sub-variants.   

[jficke13]

Dish, I tried to PM you, but I'm not great at this so if it didn't go through let me know.

[DegenerateDish]

Dish

I brought this up after a meeting today with a colleague from Hutch who said he has collaborated extensively in leukemia research with a pediatric oncologist at University of Chicago. You can speak with my colleague and he can refer you to the doc at UC. My colleague did say that you have two critical deliverables: Get a second opinion immediately and start reviewing family history. Obviously, there is a lot of genetic detail not relevant here but he suggested the challenge will be in identifying sub-variants.   

Thank you Keefe, I'm beyond grateful. We were at Lutheran General in Park Ridge, and just never got the warm fuzzies we felt we needed. Things were constantly delayed, orders weren't being placed, it almost seemed like God was telling us to go to Lurie, which we ended up doing early this evening before he would have had a poke put in, spinal tap done, and bone marrow biopsy. So we are in the process of getting a second opinion. My family history is pretty clean. My cousin had IPT (I think that's what it is) and my wife's aunt had breast cancer, but no other cancer's known.

To everyone on here...your thoughts/PM's/messages in here...all have been beyond overwhelming. If I said "thank you" a thousand times, it would not be enough. My son got diagnosed with AML, which was a real kick to the stomach (ALL is the more common cancer and has a higher survival rate), but we're fighting the fight and will prevail. Rough day ahead tomorrow as treatment starts, but as Coach Wojo would put it "win each day".

Assuming I've got ten cents to my name after this is over, I'm buying beers for you guys.

Oh, and the Bears are an unimaginable disaster. I'm glad I missed it, but sounds like the Pack should have won something like 70-7, and deservedly so. The Bears absolutely suck, from Phillips down to the practice squad.

[wadesworld]

Thank you Keefe, I'm beyond grateful. We were at Lutheran General in Park Ridge, and just never got the warm fuzzies we felt we needed. Things were constantly delayed, orders weren't being placed, it almost seemed like God was telling us to go to Lurie, which we ended up doing early this evening before he would have had a poke put in, spinal tap done, and bone marrow biopsy. So we are in the process of getting a second opinion. My family history is pretty clean. My cousin had IPT (I think that's what it is) and my wife's aunt had breast cancer, but no other cancer's known.

To everyone on here...your thoughts/PM's/messages in here...all have been beyond overwhelming. If I said "thank you" a thousand times, it would not be enough. My son got diagnosed with AML, which was a real kick to the stomach (ALL is the more common cancer and has a higher survival rate), but we're fighting the fight and will prevail. Rough day ahead tomorrow as treatment starts, but as Coach Wojo would put it "win each day".

Assuming I've got ten cents to my name after this is over, I'm buying beers for you guys.

Oh, and the Bears are an unimaginable disaster. I'm glad I missed it, but sounds like the Pack should have won something like 70-7, and deservedly so. The Bears absolutely suck, from Phillips down to the practice squad.

Kick some ass.

[StillAWarrior]

Assuming I've got ten cents to my name after this is over, I'm buying beers for you guys.

I think I can speak for all of us:  you're not buying a damn thing.  Your money is no good if we go out together.

/Continued prayers.

[hairy worthen]

I think I can speak for all of us:  you're not buying a damn thing.  Your money is no good if we go out together.

/Continued prayers.

I'm buying a round for dish.

[Coleman]

Assuming I've got ten cents to my name after this is over, I'm buying beers for you guys.

Dish, I don't know your situation, and don't need to know, but would you be amenable to Scoop helping out financially, in the way we contribute to Al's Run? Not sure how that would work, but we have thousands of Scoopers, and if we were each able to pitch in a few dollars, it could add up...

If you don't need or want direct help, we could set up a Scoop donation to the American Cancer Society or The Leukemia & Lymphoma Society in honor of you and your son.

Just some ideas

[StillWarriors]

Thank you Keefe, I'm beyond grateful. We were at Lutheran General in Park Ridge, and just never got the warm fuzzies we felt we needed. Things were constantly delayed, orders weren't being placed, it almost seemed like God was telling us to go to Lurie, which we ended up doing early this evening before he would have had a poke put in, spinal tap done, and bone marrow biopsy. So we are in the process of getting a second opinion. My family history is pretty clean. My cousin had IPT (I think that's what it is) and my wife's aunt had breast cancer, but no other cancer's known.

To everyone on here...your thoughts/PM's/messages in here...all have been beyond overwhelming. If I said "thank you" a thousand times, it would not be enough. My son got diagnosed with AML, which was a real kick to the stomach (ALL is the more common cancer and has a higher survival rate), but we're fighting the fight and will prevail. Rough day ahead tomorrow as treatment starts, but as Coach Wojo would put it "win each day".

Assuming I've got ten cents to my name after this is over, I'm buying beers for you guys.

Really glad to hear you ended up at Lurie. My nephew had major non-cancer related surgery there with a great outcome, and he felt like a star with the way he was treated by the staff. That place blew me away. Sincerely sending prayers for strength and peace of mind for you, your son and family. Hope your family is comforted by the care, love and support of others as mine has been during a family member's recent fight against cancer. One day at a time, and yes, fight to win each one!

As you process all this and get your arms around it, I'd highly recommend you consider at some point developing a Care Page for your son so you can keep friends and family informed as to his treatment and progress (which is exhausting if you have to respond to individual calls, emails etc...), and also enables others to reach out and support you and your family. This was an invaluable tool for our family and friends, and enabled a community of support to reach out in an efficient and effective way. If you are not familiar with Care Pages, please feel free to reach out to me through a direct message and I'll track down info for you on how to set it up. Obviously you have a ton going on right now; this is for whenever you get a chance to regroup a bit and get settled. Wishing all the best for your family.

[Coleman]

I'd highly recommend you consider at some point developing a Care Page for your son so you can keep friends and family informed as to his treatment and progress (which is exhausting if you have to respond to individual calls, emails etc...), and also enables others to reach out and support you and your family. This was an invaluable tool for our family and friends, and enabled a community of support to reach out in an efficient and effective way. If you are not familiar with Care Pages, please feel free to reach out to me through a direct message and I'll track down info for you on how to set it up. Obviously you have a ton going on right now; this is for whenever you get a chance to regroup a bit and get settled. Wishing all the best for your family.

Looks like you answered my question as to how supporting Dish would work Thanks!

[JWags85]

Really glad to hear you ended up at Lurie. My nephew had major non-cancer related surgery there with a great outcome, and he felt like a star with the way he was treated by the staff. That place blew me away. Sincerely sending prayers for strength and peace of mind for you, your son and family. Hope your family is comforted by the care, love and support of others as mine has been during a family member's recent fight against cancer. One day at a time, and yes, fight to win each one!

I play soccer with a couple nurses from Lurie and they are some of the absolute best people I know.  To hear them talk about their jobs is like nothing I've heard from other nurses I know.  I think one of them actually works a lot in the oncology department.  I can let you know her name if you guys end up there, Dish.  Either way, I echo what everyone has said.  Its a beautiful facility (as beautiful as hospitals can be) and its as good as it gets.  You're in good hands from doctors to the nurses who are gonna try to make your little dude smile every day.  F*ck Cancer indeed.

[StillWarriors]

Looks like you answered my question as to how supporting Dish would work Thanks!

The Care Page is more of an emotional type of support system. I believe there are other mechanisms (Go Fund Me) for financial support. I'm sure Dish can let us know on that as things become clearer.

[keefe]

Thank you Keefe, I'm beyond grateful. We were at Lutheran General in Park Ridge, and just never got the warm fuzzies we felt we needed. Things were constantly delayed, orders weren't being placed, it almost seemed like God was telling us to go to Lurie, which we ended up doing early this evening before he would have had a poke put in, spinal tap done, and bone marrow biopsy. So we are in the process of getting a second opinion. My family history is pretty clean. My cousin had IPT (I think that's what it is) and my wife's aunt had breast cancer, but no other cancer's known.

To everyone on here...your thoughts/PM's/messages in here...all have been beyond overwhelming. If I said "thank you" a thousand times, it would not be enough. My son got diagnosed with AML, which was a real kick to the stomach (ALL is the more common cancer and has a higher survival rate), but we're fighting the fight and will prevail. Rough day ahead tomorrow as treatment starts, but as Coach Wojo would put it "win each day".

Assuming I've got ten cents to my name after this is over, I'm buying beers for you guys.

Oh, and the Bears are an unimaginable disaster. I'm glad I missed it, but sounds like the Pack should have won something like 70-7, and deservedly so. The Bears absolutely suck, from Phillips down to the practice squad.

Just finished a meeting at Hutch with my colleague. He has worked extensively with Dr. Kenan Onel who is a world class pediatric oncologist at the University of Chicago. Dr. Onel and my colleague have collaborated in genomic studies for years and are currently partnered on a major investigation into AML. Let me know if you want to connect with Dr Onel as he really does have his brain wrapped around AML.

[🏀]

MUScoop Fundraiser for Dish's kid!

[ChicosBailBonds]

The Care Page is more of an emotional type of support system. I believe there are other mechanisms (Go Fund Me) for financial support. I'm sure Dish can let us know on that as things become clearer.

Before acting on this advice,  I'd love to have an accountant or someone of expertise opine on this. I've heard there could be a few considerations before one goes down this path.   Sorry, being anal but I want to make sure Dish is making an informed decision with all the appropriate data.  I think the idea is great and have contributed to those types of campaigns on a number of occasions, just not sure what the ramifications are for the family (if any).

Thanks

[Goose]

If looking to raise money I recommend Go Fund Me big time. When my BIL died this summer his family raised a ton of money from countless people. It is easily shared on Facebook and they literally received money from around the country.

[DegenerateDish]

Chicos was right to advise to look into it. There's no tax issues, since it's a gift, but gofundme does take about 8%. All that said, my sister in law did a go fund me page for my son, it can be found here http://www.gofundme.com/gzrcnc or under #bradleystrong.

Thank you all so much again for everything. It's been a hellacious couple days, feels like a game of Russian roulette, one thing turns out positive, but there's four more horrific chances still.

If you're friends with me on Facebook, we lucked out with Jimmy Butler and Doug McDermott visiting us yesterday. Butler said he's working towards his graduate degree soon.

Please keep praying and thinking of us. Couple big days ahead and some very complicated decisions to make.

Bless you all.

Brian