Updates
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After finding out U of M never sent our scan last week, Friday they told me it was overnighted and would arrive Monday - it did not. They did ship it but did not rush it - I was so stressed that I pulled the entire scan folder from my disk I had and zipped it and sent a link to my doctor praying she would look at it and not wait for the actual CD to arrive. She did tonight....
I just got the call a few hours ago with our official news about the inflammation in Nicky's spine. Because of the way Nicky has healed from the surgery he has what is called syrinx (which is the inflammation that is present) it is likely related to the acquired chiari and tight craniocervical junction. What this means to explain it better is that from where his tumor was located, his brain dropped slightly during healing over the past two years. It is now slowly causing this inflammation to be present in the spine. The scan showed that the inflammation has moved up two vertebrae's so it is slowly becoming an issue that will require a surgery for posterior fossa decompression at some point. Dr. Boop our neurosurgeon reviewed the scans today also and we will be planning surgery during our next Memphis MRI in October. While we do not invite this news today, we are grateful it is corrective and that this is not cancer, that this is not something worse.
We are extremely sad to have to put him through another surgery, hospital stays and pain managing that we have managed to avoid since leaving St Judes - we will be right by our little mans side. Pray for us in preparation for this to go smoothly and that his recovery is quick. My stay in Memphis will be longer than I am use to but I am ready to do whatever is needed for my boy. This is not and in and out procedure, this is surgery and so we ask that you pray for our little NickyBear and that his scan also remains cancer free.
We are not certain of the dates yet of the trip as they may change due to this surgery, we will keep you posted. We knew eventually we would have to cross uninvited bridges from treatment, it seems all the children that are blessed enough to get through treatment have to endure different obstacles at different times.... We Thank God DAILY for the gifts of life the blessing that our Nicky is here, it all comes at a cost that we wish we could pay for him instead of him ever having to endure any of it.
GOD PLEASE WATCH OVER OUR BABY BOY!
Its been summer .... we are enjoying the boys and Nick can not sit still, so Christian is always on the go with his Dad. Nonetheless, Nicky has been battling an ear infection for over 3 1/2 weeks in his left ear since the tube was removed. Endless weeks of meds is just no fun for him. He also caught a virus type cough among the 3 bacterias that he came up positive for from the ear culture. Its not easy trying to let him swim and yet he can have no water get in his ears. Thankfully his spirit hasn't been effected much by these both illnesses that could have taken away his energy. 
We got up north for the 4th of july and we decided that we were going to release balloons for some of the children that we have lost to this fight .... This Yellow one was released for all the fighters - Nick is holding this and had the job of releasing them,
My point with posting it again here is - don't sweat the small stuff .... and remember almost everything is small stuff..... smile - thank God when you wake up that we live in a country that gives us freedom and we are capable of everything we dream if we just try and work hard for it .... not everything is in our control though and so we leave the rest in Gods Hands.....so just for today Lord .... thank you for the "GIFTS" we hold .....
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