MUScoop
MUScoop => The Superbar => Topic started by: DegenerateDish on November 08, 2014, 08:34:53 AM
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Last night my 4 year old son was diagnosed with leukemia. We're in a suburban Chicago pediatric hospital now.
I'm a wreck mentally and emotionaly right now.
Does anyone know if we should pull him out of where he's at and go to a place like St. Jude? We want him to have the best treatment on Earth, but I don't know how to make an informed decision right now.
If anyone has knowledge, advice, help, I'd be beyond grateful.
I know I yell/bitch about football on here, but I love this board, thanks guys, God bless.
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My heart breaks for you, Dish. Thoughts to your family. You'll get through this.
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So sorry to hear. Lurie is world class. Start there and if needed they can direct you.
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I'm very sorry to hear. You are included in my prayers.
The good news is that this is the 21st Century and major advances in treatment are available.
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No knowledge/help in terms of your question, but definitely prayers for your son and family. Kids are fighters.
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Thinking of your son and you and your wife.
Prayers of strength and faith that he will live a long, fulfilling life.
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More prayers, Dish. I sincerely wish I could help in some other, more concrete way. But know that you guys have my prayers.
May God fill you and your family with peace; may He bring you to the people most capable of caring for you and your son; and may He guide the doctors and nurses caring for your son.
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Children's hospital in Milwaukee.
I can't begin to imagine how this is impacting your family. Our thoughts are with you.
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Aww Dish I only wish I could be of help in some way other than prayer....
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First of all, thoughts are with you and your family.
Even though you are located in Chicago, please look into Johns Hopkins in Baltimore. It is probably the best overall pediatric center in the country. They just opened a children's wing in 2012 that is beyond belief. 20% of the patients come from out of state, even from foreign countries for treatment.
My friend recently was in the same situation and traveled from South Carolina to have his child treated. I am happy to say, all things worked out for now and doctors feel a full recovery.
He also considered the Mayo Clinic in Minn., but went the distance for the best treatment.
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God Bless!
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Children's in Chicago is fantastic. I think that will be an excellent starting point. If you wanted, you could seek second opinions on treatment courses elsewhere. Hospital rankings aren't the best or very comprehensive, but here's what I've found:
http://health.usnews.com/best-hospitals/pediatric-rankings/cancer
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Prayers, Dish.
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Prayers up for your son and family, Dish.
You might find some helpful resources from the Leukemia and Lymphoma Society:
http://www.lls.org/#/aboutlls/chapters/il/
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Dish, heads up and strong.
Kids are resilient.
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Dish
In our prayers big time. Wish I could help in some way.
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Prayers up, Dish.
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Thank you all so much. I may not know you in person, but We Are Marquette, and I consider you all family.
We're going to wait out which type of leukemia he has, start initial treatment where we are at, and then see where things stand. We're lucky the cure rate is high, just concerned he's at the right place with the best docs.
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Good luck, Dish. My prayers are with your son, as well as with you and the rest of the family.
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Wishing you the best, Dish.
FWIW, US News lists Dana Farber in Boston as the #1 ranked pediatric cancer center, followed by Children's Hospital in Philadelphia and Cincinnati Children's Hospital. And of course places like Mayo and Hopkins are pretty much good at most anything (and ranked 13 and 14 respectively in pediatric oncology).
Any of those choices (and I'm sure many others) would be great, but if you happen to choose Mayo, send me a PM. I work there, and know one of the top pediatric oncologists.
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Whispered a prayer for your son and you and your wife at mass this evening. God speed.
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Dish, I'm sorry that I can't be of help regarding doctors or treatment centers, but you, your son and the rest of your family are very much in my thoughts and prayers tonight and going forward.
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Best to the Dish family. It is a kick in the nads to have your kid diagnosed with cancer. Just know there are many of us who have gone through this, and take comfort knowing you are not alone as the initial news and uncertainty can be overwhelming.
Talked to the family expert and her answer as to the best place for childhood leukemia is the Cleveland Clinic, fwiw. That doesn't mean that you don't have two good choices in Chicago, as this will put stress on you juggling schedules, the up and downs, and work/life. The Ronald McDonald Houses can be a very choice for you during this fight.
Prayers up for your little Warrior!
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Prayers for you and your family. He can and will get through it!!!
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Dish - we are partnered with Fred Hutch Cancer Research Center. Hutch has done magnificent work in hematology. PM me and I can put you in touch with the right people.
http://www.nccn.org/members/profiles/hutchinson.asp
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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
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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.
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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.
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Any chance anyone know any pediatric oncologists at Lurie Hospital in Chicago?
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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.
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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.
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f*ck cancer
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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.
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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.
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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.
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Dish, I tried to PM you, but I'm not great at this so if it didn't go through let me know.
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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.
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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.
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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.
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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.
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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
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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.
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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!
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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.
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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.
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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.
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MUScoop Fundraiser for Dish's kid!
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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
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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.
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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
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Thoughts and prayers with your family!
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Wishing you the best, Dish.
FWIW, US News lists Dana Farber in Boston as the #1 ranked pediatric cancer center, followed by Children's Hospital in Philadelphia and Cincinnati Children's Hospital. And of course places like Mayo and Hopkins are pretty much good at most anything (and ranked 13 and 14 respectively in pediatric oncology).
Any of those choices (and I'm sure many others) would be great, but if you happen to choose Mayo, send me a PM. I work there, and know one of the top pediatric oncologists.
I see that you are going to that hospital in Chi, but Dish, if for some reason you needed to come out to Philly/Children's Hospital of Philadelphia, shout me a holler and you got free lodging at my place if you needed it.
Prayers up. Stay strong.
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Please keep praying and thinking of us. Couple big days ahead and some very complicated decisions to make.
Bless you all.
Brian
Be strong. Make decisions. Trust in God and the miraculous power of western medicine. Just by being where you are you've given your kid the best chance he could have had in human history.
And, I mean this with all the seriousness in the world, if you need a thing that is within my power (and judging from the response anyone on this board, in the MU community, or even within the greater community at large) do not have too much pride to ask. I will move heaven and earth to assist in any way I am able, and I know I'm not the only one.
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So sorry to hear. Lurie is world class. Start there and if needed they can direct you.
Lurie was amazing for both of my friend's run-ins with Leukemia. Top notch everything.
I've been caring for my mother who has stage 4 pancreatic cancer for the past year. It's a rough process but you are going to have to take a deep breath, put on your game face and be the encouragement your kid needs right now. I can only imagine how you are feeling with this being a child of yours.
Keeping you in my thoughts. I have a friend up at Mayo if you feel there is a need to go up there as well. As I am also located in the Chicagoland area, let me know if there is anything I can do--even if it's just grabbing a beer and taking a deep breath.
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A story update was posted on the site ..
http://www.gofundme.com/gzrcnc
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Kinda cool .. hit 200 donations today.
2014 tax year is ending tomorrow .. perfect opportunity to step up ..
http://www.gofundme.com/gzrcnc
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Kinda cool .. hit 200 donations today.
2014 tax year is ending tomorrow .. perfect opportunity to step up ..
http://www.gofundme.com/gzrcnc
I don't mean this as a reason not to give, but I don't think this particular campaign is a "Certified Charity campaign".
http://support.gofundme.com/entries/22573791-Is-my-donation-tax-deductible-
Anyhow, give out of the good of your heart, but don't expect a tax deduction.
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Rock, I think you need to more concern yourself with all that weed you are deducting as medical expenses in Colorado ... 8-)