Hi all .... So update Nicky has his local MRI this Friday at U of M at 8am - thank you Kim Karp for going with me to sit there! So as you can imagine stress has set in and the idea of waiting for the DVDs to be overnighted to St Jude and arrive Monday waiting for a phone call from them is making for a very long weekend where time can let your mind race - I hate this stress! We have no clue when we will have results.  Then this past Monday night Nicky woke up screaming pointing to his ear, sure enough right ear infection. Once the infection is gone he will need another procedure to close the hole in his ear. They will graft a tiny piece of skin from behind his ear and place it inside his ear hoping it takes and heals. Especially since we have a pool being put in right now - it's either chronic ear infections or surgery. We will be getting this done as soon as we can.

I just shake my head at procedure after procedure that he's had to go through - I just hate it all! And I'm not fond of the comment he's tough or he's a strong little guy - he is that's true, but he shouldn't have be the this tough - no child should.

On another note we are settled in to the new home and the twins anatomy ultrasound was last week - it's crazy what cancer has done to me mentally - I was a mess until I heard they are perfectly fine and growing ahead and on track. Like I said this isn't a family blog but I will drop a line here and there since so many of you asked me to.

Aside from that Nicky's doing really well - we are switching to a new ENT for hearing aids here - the ones from Jude are so loud he won't wear them. So we are trying to move things locally and not rely so much on them because they are just too far to help with adjustments and trying new things to get him to want to wear them. He's at a point that he will repeat everything you say, which is great but the hearing aids will help with certain sounds he isn't hearing load enough.

So I ask you all to please pray for our NickyBear that he is cancer free and that this shunt is stopping the edema / swelling / fluid build up has at the very least stabilized and not gotten worse - of course we know that it could take months for it to reverse completely but we are praying its already reducing and not getting worse - worse could mean an extensive surgery that we are praying he will not need. Pray for us this weekend while we wait, I of course will do all I humanly can to get our u of m records online accessible tomorrow so we aren't waiting but that is serious wishful thinking - this determined momma will try it all.

chillin

Please take a moment to pray for Tanner S. and his family, I just learned last night his disease has progressed and he will be placed on hospice. The Butterfly Program ( hospice) I can't tell you how heartbroken I am to even know there's such a program or why it even needs to exist - Tanner has been fighting cancer since age 2 and I believe he's 17 just wanting to be a normal teenager and DJ.

I do have one event that if you are a golfer I really hope you will attend it - if not just come to the dinner all the proceeds go to CERN which is the only network dedicated to finding a cure for what our boy was diagnosed with - they want to cure ependymoma! If you would like to be a sponsor please let me know!

cernn

Dear Lord,

We lay at your feet our stress, worries and fears .... take care of our Nicky because you always have Lord .... please let this scan be disease free and the inflammation ceased and wo would gladly welcome it to be GONE in Jesus' Name ... we ask you to touch the Seebaum family and so many others  ... Please continue to heal our NickyBear...

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