Updates
|
DATE_FORMAT_LC3
Hi all, well as you can imagine Mondays meeting with our doc paralyzed me - I guess you have to chalk it up to everything happens for a reason!
Last night my primary called and said no one is concerned with secondary growth or cancer at the brain tumor board meeting - it's simply radial changes that happen and can resolve ( I think I started breathing again).
The spine inflammation has been an issue since last May so we knew it may need to be addressed - so Today I spoke again with Dr Boop from neurosurgery and the syrinx surgery seems more of a gamble if it worked and it may need to be repeated multiple times - he talked about a 3rd ventricle ventriculostomy which may temporarily fix these issues or a shunt that indeed will resolve all the issues but that's a permanent thing - while we have avoided a shunt for almost 3 years - we are actually relieved that we have a solution and it will aid all issues - the best part is Nicky has no symptoms from inflammation and he is cancer free !!!This procedure is nothing like the syrinx surgery it is a one over night stay and released - it is the most common procedure a neurosurgeon does. He also said the other area is just radial changes. (whewwww again)
My doctor tossing guesses out to an educated momma was not appropriate until they knew especially with fatal guesses at that - I read the reports today and they only say subtle changes, more than likely radial changes - so far off from what we were told leaving Memphis devastated believing we had no chance - surely it has made us more grateful and even more humble than we already are - we will be making decisions tomorrow but this is not bad news !!!! It's just something that Nicky needs and we are totally ok with that! So pray for a quick recovery where ever we choose to do it at. ? thank you so much for your support prayers and love!
So let me share with you our little guy before MRI Monday ..... our tears have stopped God has showed us the power of prayer AGAIN ..... please continue to pray as we will scan in 8 weeks again.God IS Good All of the time ....
I hope you all had a wonderful Christmas and New Year.... so I realize I haven't updated since the last scan report, I apologize for waiting so long to update you all.
On a different note, he has yet another nasty ear infection that led us to ENT yesterday. We aren't sure why he's having chronic ear infections but it has happened the last 4 scans that he just seems to get these bad ear infections that last 2 weeks. Because of chemo he's so resistant to so many antibiotics that he needs really strong ones to help rid him of these infections and his immune system still is not where we hoped it would be by now so it just takes longer for him to recover. We are relieved that all the symptoms of the inflammation in his spine he exhibits none still which would be balance issues and fatigue. He is a ball of energy bolting up and down the multiple levels of stairs with no help at all and he rarely takes a nap anymore. On a side note we are hoping to see audiology at St Jude if not then back here to have Nicky fitted for a hearing aid on his good ear, we believe his normal hearing range may now be an issue with knowing he lost his hearing in his left from radiation over the last two years. Just one one the many scarifices to have his beautiful face here is all that I need to remind me that these things are managable. 
I am trying to keep my posts as light hearted as I can because I have been told my posts, the reality is just too much for the people following our Nicky. I will not apologize for paying respect to the children we have lost and continue to lose. Like I said I am "trying" to keep these posts as light as I can too.
They try so hard at Jude to make things welcoming this was our room while we waited for the doctor. We played while waiting but the wait was a little longer than Nicky liked so we walked - thats nothing new at Jude - never walked more in my life than that campus.
He wasn't thrilled with the idea of having his port in his chest all night to I talked him into more playground action to keep his shirt on. The following day was the MRI and well - I wasn't the happiest person because Nick's flight was delayed, then canceled and then switched planes. I didn't know if he would make it or not and I just wanted my husband with me.
- we have yet to throw a party but did have cake privately for him and got him a few gifts to celebrate God giving us another year to be so grateful for.