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nichenson

My absence of late...

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I have met a few people on here and done several exchanges with others so this isn't too far off the beaten path.  Two weeks ago I basically dropped off the map.  I had thought that the appointment for my daughter would be routine and we would just be going back in a week or two.  The appt turned into a need for an MRI so down to the ER we went so we could get it done fairly quickly.  The MRI coupled with a very high BP turned into an emergency surgery for an EVD.  That necessitated another full sedation MRI on Saturday.  That tumbled into a craniotomy for a biopsy and permanent shunt.  A little over a week and a half later we have a diagnosis of MBEN which is Medulloblastoma.  It is the Sonic Hedgehog version.  Yes, it is named after the video game.  Right now my wife and I are in discussions with St Judes on how to proceed from here.  We have been on a huge roller-coaster ride.  At one point we thought we were just going to have a few weeks or months left to where we are now with possibly a 50% or greater chance with chemo for survival over five years.  I am certain there will be bad moments as well as good ones over the coming weeks and months.  If we start chemo, we should know after two cycles if it is working and if she is tolerating it.  We keep telling ourselves about the side effects but also that kids are resilient.  Our daughter's quality of life takes precedence though.  I wish I had a crystal ball. 

 

This forum and the hobby as a whole has been a source of great enjoyment for me over the years.  It's a great escape at times so I will be on and off here at times.  If I reply or message someone and then disappear for a bit, this is why.  Luckily my daughter is also my boss as I get to be a stay at home father.  This isn't how I had hope to spend her first years, but she has been such an influence on both of us, I am determined to enjoy it as well as provide as much enjoyment as possible for her. 

 

If anyone wants to follow along and get updates, we created a Facebook page.  It is impossible to answer every text, call, and email so we figured this would be the best communication method for everyone.  We also can share schedules and pictures.  It is called "WylieRae's Love".  

 

https://facebook.com/groups/370951637189652?ref=m_notif&notif_t=group_comment

 

It is closed so if you request to join, just put LSP for the answer to the question.  I know we don't often use our names as our screen name on here. 

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oh gosh Nic...

 

that's terrible to read. But you have strength and fortitude that will get you through this... at times like this our innermost strength comes for within and having positive friends and family around to support you ... just like the LSP Family.

you have MY best wishes and prayers that your daughter will get through this with your love and support and understanding.

 

if there is anything I can do let ME know ...(and you need to take care of yourself too at a time like this....).

 

I will keep checking  in here to see your updates(not on Facebook ) (I am away from home for 2 months starting tomorrow but will endeavor to keep popping in and you have MY prayers) and hope your consultation with the Doctors is a positive one.

 

God Bless you All.

 

 

 

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All i can do is send my total and utter best wishes to you and your family. Stay strong and i truly hope things get better for you all in the near future.

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Keep the faith.   My Aunt and Uncle were told their 8 year old son who had

a serious head injury would be lucky to make it thru his teens.

He's now in his late 50's and doing fine.

'Miracles' can happen.

 

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Very very sorry to hear about this.  Something similar happened to me last year with my brother, so I have some empathy for your situation.  As a father I just don't want to think of something similar happening to my daughter.  Kids are very resilient however and tend to deal with these things better than adults.  So my thoughts are with you and I really hope she makes a full recovery.

 

Very best wishes,

Michael

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