Personal Update - Happiest Christmas Ever

GotMelky

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I let a couple people know about this, as we were in trade talks or they were waiting on cards but thought I would post for all.

I won't go too far into the details but I wanted to share that on December 3rd, my son was found to have a massive brain tumor called a craniopharyngioma. It occupied most of the open space around the pituitary, hypothalamus, and was causing his optic nerves to bow. Looking at the MRI afterwards was shocking - when the oncologist is impressed by the size of it, that says something.

He's had a number of health problems the last few years, but no one thought to check into this until an ophthalmologist saw us last week (he started having some issues with his sight) and sent us for an emergency MRI. Less than twelve hours later he was in the hands of the neurosurgeon.

He is physically recovering well but the brain trauma has been pretty severe and he is struggling with some aspects of that. The endocrinologists are working with us to help determine the extent of damage to the pituitary and hypothalamus. His right optic nerve was pretty beat up, so his vision is pretty terrible in the left eye and he has a deficiency in his peripheral vision. Some of this might come back over time but we have to wait and see what happens. Right now, he's struggling to remember anything recent (the last few weeks, what he ate for lunch, where his sister is, etc.) but that should all hopefully come back over time as well. He's going to need physical therapy, occupational therapy, and there will likely be a lot more doctors visits in the future.

We have a long road ahead but we didn't lose him.

He's a tough kid with a great attitude, so he's taken this all in stride. He's a terrific student, budding musician (brass, strings, guitar, piano), and an amazing thoughtful young man - he does a yearly fundraiser to donate to a cause (humane society, food bank, etc.), helps our elderly neighbors with chores, and won a philanthropy award when he was in middle school. He's also that kid that just doesn't seem to have a mean bone in his body. The local paper found out through a friend and published a nice article about him.

We've run the whole range of emotions at this point and are still processing this. Being able to write it out is helpful. I just wanted to share this with the community because it's a good reminder to always take the time to tell your kids you love them and give them extra hugs. You never know what tomorrow holds.

We got to come home earlier this week and being home is a huge blessing.
 

KCLJ520

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@GotMelky We will be praying for his speedy recovery, and thank you for sharing his story, and your family's as well. What a rollercoaster between the 3rd and now, just so thankful things are better and continuing in the right direction!

So often we take so many things for granted, and if there is anything this year has taught us, it is to appreciate what we have. Your awesome story of your family's strength, not to mention your son's resilience in the face of tremendous suffering, is truly inspiring. Please know of our family's prayers for you and yours this Holiday Season and always!

Christmas Blessings!

Kevin
 
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katester44

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Sorry to hear everything that your son has gone through. Sounds like a tough little kid - continue the fight strong. Merry Christmas and prayers to your entire family!
 

t.rooster

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Hey man,
Sounds like you and your family have been to the edge and had a chance to look around.... I work with adolescences, and anytime anyone tells me of one that displays empathy to those around them is a wonderful thing in this increasingly insular world. Please tell me his name, I will hold your son in the light and wish you and your immediate family strength to see it through. Blessings friend....
 

Rhubarb_Runner

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Medical issues are always scary -- super glad that his problems were diagnosed and surgery performed, and hopefully things improve going forward and his therapy goes well. Keep positive! He and his family are in our prayers; have a happy holidays
 

richloughlin

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Ben:

Thanks for sharing your son's health with the folks on this board. Knowing this, he's in my prayers going forward; as well as you and your family. Our family had gone through a rough patch for 2-3 years (my wife has Chronic Lymphocrytic Leuchemia) but is now thankfully doing better. At this stage of my life, if you have God, family and friends, you have more than anything else you may own.

We (your Friends on this board) look forward to hearing continued good news about your son's progress towards a full recovery.

Rich
 

Kirbyfan34

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Wow. Glad to hear that he is ok. Reminds me of the heath issues our son has dealt with.
Born in Dec in 03, after an days worth of labor, later finding out his cord had a knot in it and was wrapped around his neck. Around Feb of 04 I started to notice that when I would hold him and feed him, it would put my arm to sleep. At his 4 month well baby the doctor referred us to Children's Hospital. The resulting hours in the ER and getting the diagnosis of hydrocephalus and Dandy Walker Malformation, and that they would need to place a shunt in his head to allow the fluid around his brain to drain like normal. Nervous and not knowing was the worst. Foolishly I googled both conditions and seeing everything from not walking/talking to feeding tubes and 24 care. Undaunted, for the next two years check ups and a revision almost two years to the day. Every time we took the exit for the hospital he was inconsolable. Yearly check ups and tests helped with the services he may need, and happy to report that he is almost halfway through his jr year of High School and looking forward to graduating next spring.

Kids are resilient and stronger than we think. I wish your child the best and hope that everything works out for him.

Take care and God's blessings.
 

anglinomics

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I wish I had the right words to say. Thankfully, there is hope. I pray that he can have a good life, full of his many contributions. May God bless your family for the long haul.
 

GotMelky

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We really appreciate all the thoughts, prayers, and kind words of support. I read them to him (he forgets shortly after) but he is appreciative for sure. We've been sneaking in some normal stuff - watched a little basketball together but he falls asleep easily when not actively engaged, so only a quarter or two. I wish wax was a little easier to find because that's something active we can do - but even Pokemon is wiped out in our area.

We did manage a really good deal on some Topps Pro Debut and someone recommended it to us as a product with lots of hits that could be a fun one. Also ordered some Topps Mini prior to us finding out about the tumor and we can open some of it when it arrives today. He was starting to do some video breaks this fall as something he was interested in doing and maybe setting up a channel but we ran into these health issues and it's derailed for now. Still have some breaks saved that he can mess with when is ready.

Still working through the after effects and trying to get him a little more active. We see improvements but when he's really tired it's a struggle.
 

KCLJ520

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We really appreciate all the thoughts, prayers, and kind words of support. I read them to him (he forgets shortly after) but he is appreciative for sure. We've been sneaking in some normal stuff - watched a little basketball together but he falls asleep easily when not actively engaged, so only a quarter or two. I wish wax was a little easier to find because that's something active we can do - but even Pokemon is wiped out in our area.

We did manage a really good deal on some Topps Pro Debut and someone recommended it to us as a product with lots of hits that could be a fun one. Also ordered some Topps Mini prior to us finding out about the tumor and we can open some of it when it arrives today. He was starting to do some video breaks this fall as something he was interested in doing and maybe setting up a channel but we ran into these health issues and it's derailed for now. Still have some breaks saved that he can mess with when is ready.

Still working through the after effects and trying to get him a little more active. We see improvements but when he's really tired it's a struggle.

@GotMelky

Checking in....how is your son? Praying for him, and you too!

Blessings,

Kevin
 
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