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Gustafson
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10,463 Posts
Short answer: headaches

Long answer: She developed headaches back in late January. At first we and the doctors thought it was just from the fairly mild case of covid that she had just prior since it was a common symptom of that. Turns out with was just a coincidence. The headaches went away briefly, then came back and began worsening frequency and severity, they got really bad like migraines with occasional vomiting, and she'd basically fall fast asleep after them. Quite a few doctor and urgent care visits didn't tell us anything. They'd always check vitals and things like balance, eye function, reflexes, muscle strength, etc since those are usually the first signs of neurological issues or brain tumors. Hers were always fine and still are. Last weekend of March she got worse and we got her in to UofM Children's Hospital ER that Monday. We were already trying to get into the pediatric nuerology department to make sure it was nothing serious, but they have months long waits unless you go to the ER, so it got bad enough that that's what we did. We didn't expect any bombshells, we were basically just trying to rule out anything serious. They did an MRI and unfortunately that MRI revealed a tumor on her brain. From there the news just got progressively worse. Spent the better part of 2 weeks in late March/early April in the hospital with her getting the headaches and vomiting under control, then several surgeries to further help and prep for treatment. She's now halfway through her course of 13 radiation treatments but that's basically just a bandaid; it only works for a little while. Could be weeks, could be months, but it'll be back with a vengeance. It's pretty much all about quality of life and if possible prolonging of life at this point. This is the same type of tumor that killed Neil Armstrong's daughter 60 years ago and treatment has barely changed since then. There are a number of clinical trial drugs and drug combos and various other research studies in the works to try and finally have a breakthrough with it, but so far no luck. And apparently my daughter has an even more rare version of an already rare tumor where hers has spread elsewhere on her brain and spine where normally it stays on the brain stem, so many of those trials likely won't even be available to her because there's less chance of a positive outcome so it'd skew the data. So while her odds were awful from the get-go, they've only gotten worse. So we need a miracle.
I pray there is a miracle for your daughter. 🙏
 

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Short answer: headaches

Long answer: She developed headaches back in late January. At first we and the doctors thought it was just from the fairly mild case of covid that she had just prior since it was a common symptom of that. Turns out with was just a coincidence. The headaches went away briefly, then came back and began worsening frequency and severity, they got really bad like migraines with occasional vomiting, and she'd basically fall fast asleep after them. Quite a few doctor and urgent care visits didn't tell us anything. They'd always check vitals and things like balance, eye function, reflexes, muscle strength, etc since those are usually the first signs of neurological issues or brain tumors. Hers were always fine and still are. Last weekend of March she got worse and we got her in to UofM Children's Hospital ER that Monday. We were already trying to get into the pediatric nuerology department to make sure it was nothing serious, but they have months long waits unless you go to the ER, so it got bad enough that that's what we did. We didn't expect any bombshells, we were basically just trying to rule out anything serious. They did an MRI and unfortunately that MRI revealed a tumor on her brain. From there the news just got progressively worse. Spent the better part of 2 weeks in late March/early April in the hospital with her getting the headaches and vomiting under control, then several surgeries to further help and prep for treatment. She's now halfway through her course of 13 radiation treatments but that's basically just a bandaid; it only works for a little while. Could be weeks, could be months, but it'll be back with a vengeance. It's pretty much all about quality of life and if possible prolonging of life at this point. This is the same type of tumor that killed Neil Armstrong's daughter 60 years ago and treatment has barely changed since then. There are a number of clinical trial drugs and drug combos and various other research studies in the works to try and finally have a breakthrough with it, but so far no luck. And apparently my daughter has an even more rare version of an already rare tumor where hers has spread elsewhere on her brain and spine where normally it stays on the brain stem, so many of those trials likely won't even be available to her because there's less chance of a positive outcome so it'd skew the data. So while her odds were awful from the get-go, they've only gotten worse. So we need a miracle.
I have no words...i feel so awful for you right now.
I'm like you, the only time I've cried since being an adult has been over my children. There's no worse feeling than the helplessness you have...
I wish i could do far more for you, but do you have a way i can donate to you and your family? I know you are missing work, spending more and probably not doing the best job taking care of yourself, is there a go fund me or some such thing for your family? I would love to help you with some expenses, or a room or anything to help alleviate the stress of this time in your life.
 

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Registered
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9,922 Posts
Short answer: headaches

Long answer: She developed headaches back in late January. At first we and the doctors thought it was just from the fairly mild case of covid that she had just prior since it was a common symptom of that. Turns out with was just a coincidence. The headaches went away briefly, then came back and began worsening frequency and severity, they got really bad like migraines with occasional vomiting, and she'd basically fall fast asleep after them. Quite a few doctor and urgent care visits didn't tell us anything. They'd always check vitals and things like balance, eye function, reflexes, muscle strength, etc since those are usually the first signs of neurological issues or brain tumors. Hers were always fine and still are. Last weekend of March she got worse and we got her in to UofM Children's Hospital ER that Monday. We were already trying to get into the pediatric nuerology department to make sure it was nothing serious, but they have months long waits unless you go to the ER, so it got bad enough that that's what we did. We didn't expect any bombshells, we were basically just trying to rule out anything serious. They did an MRI and unfortunately that MRI revealed a tumor on her brain. From there the news just got progressively worse. Spent the better part of 2 weeks in late March/early April in the hospital with her getting the headaches and vomiting under control, then several surgeries to further help and prep for treatment. She's now halfway through her course of 13 radiation treatments but that's basically just a bandaid; it only works for a little while. Could be weeks, could be months, but it'll be back with a vengeance. It's pretty much all about quality of life and if possible prolonging of life at this point. This is the same type of tumor that killed Neil Armstrong's daughter 60 years ago and treatment has barely changed since then. There are a number of clinical trial drugs and drug combos and various other research studies in the works to try and finally have a breakthrough with it, but so far no luck. And apparently my daughter has an even more rare version of an already rare tumor where hers has spread elsewhere on her brain and spine where normally it stays on the brain stem, so many of those trials likely won't even be available to her because there's less chance of a positive outcome so it'd skew the data. So while her odds were awful from the get-go, they've only gotten worse. So we need a miracle.
So sorry to hear of this. We will pray for your daughter and your family in this situation. I will ask my wife to add you to the prayer chain of people at our church to pray for your daughter.
 

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Yooper In Training
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7,552 Posts
Thanks guys, I really appreciate it. Add in a fender bender and smashed up truck on the way to radiation yesterday and things are just freaking wonderful around here.

I didn't mean to steal @greygoose 's thunder though, so congratulations again to him!!
 

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Yooper In Training
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7,552 Posts
Sean,
I parrot what others have said. If there is something you need, shout it out. I know there is nothing we can do on a personal level but if there's something that will make a difference, swallow your pride and let us know.
Thank you Jim and everyone else. I do appreciate it. And I've quickly learned to accept help, it lightens the load on me and my family and people feel better doing anything they can to help in such a horrible situation. At this point I don't need anything. The outpouring of support from everyone(friends, family, employers, strangers, you name it) has been incredible and really has helped a ton in ways I didn't even know were needed. Things are going as well as they can at this point so we're hanging in there. Once she declines again is when it will get really hard but for now I'm trying to ignore that as much as possible and enjoy these good times as a family. Heading on our first camping trip of the season tomorrow since we were unable to do the original one we had planned earlier this month.
 

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Gustafson
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10,463 Posts
Bought my wife Judds tickets for her birthday tomorrow :cautious: Hate to be selfish about such a thing, but it's a real disappointment.
Yeah, that's a shame. She died relatively young.

Are the tickets refundable?
 

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Yooper In Training
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7,552 Posts
x2! HAVE A GREAT TIME!
It was a good one. Short trip and iffy weather on Saturday but we had a good time and made the best of it. Hikes, playground, bonfires, bike rides, grilling, etc. Good way to spend a weekend but I wasn't ready to come back to reality. We would've stayed longer if my daughter didn't have radiation Friday morning and this morning.
 

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Gustafson
Joined
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10,463 Posts
It was a good one. Short trip and iffy weather on Saturday but we had a good time and made the best of it. Hikes, playground, bonfires, bike rides, grilling, etc. Good way to spend a weekend but I wasn't ready to come back to reality. We would've stayed longer if my daughter didn't have radiation Friday morning and this morning.
I am glad to hear that even though it was short, you guys had a good time!
 
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