My absence of late... Final update for now on this topic...

[nichenson]

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. 

Edited October 10, 2020 by nichenson

[Out2gtcha]

Sorry to read that, its a tough thing to have to deal with when its your own daughter. I couldn't even imagine. 

[AlanG]

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.

[LSP_Kevin]

Sorry to hear about this, Nic. Having a child with a serious illness is the worst thing. You have my best wishes for the best outcome for your daughter.

 

Kev

[LSP_Ron]

Terrible news Nic, I hope things work out for the best

 

Ron

[spacewolf]

Very sorry to here this. I'll be following along and sending wishes for a good outcome.

[Gazzas]

My feelings go out to you and your family!

[MikeMaben]

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.

 

[MikeC]

Very sorry to hear that.  Very best wishes to you all.

[Kagemusha]

Very sorry to hear about your daughter's health problems, hope she responds well to treatment, and makes a full recovery. 

[LSP_Mike]

Yes, best wishes for a full recovery.

[Dpgsbody55]

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

[curiouslysophie]

So sorry to hear this. All my best wishes to you and your family for your daughter to make a full and speedy recovery.

[Jeff T]

Can only echo what everyone else has said, and really hope your daughter can make a full recovery!

 

Best wishes,

Jeff.

[nichenson]

I wanted to give everyone an update.  My daughter's tumor has shrank significantly, more so than the doctors expected.  She has finished her induction and next week she starts on consolidation.  There isn't much of the tumor left and her primary doctor believes what is left is dying due to the intensity differences.  She still has a cyst and there is one spot which appears to be scar tissue.  Her brain structure is starting to develop normally, and her ventricles have shrank which means the hydrocephalus is reversing.  She isn't out of the woods yet but this is the best news we have had since early September.  

 

On another note, since her consolidation is much less involved, this should afford me some bench time over the next few months.