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Not our typical update - far more concerning and I just truly am scared.
There is any area in the pons/ the brain stem area and it has radial changes and is abnormal. This was not there last scan from what my doctor said.
They have never seen it before 2 yrs out from proton and they are all concerned ( 3 doctors looked at it already). What this means is that while he shows no sign of relapse - it is not ruled out what they are looking at is not a secondary cancer induced from radiation. Our doctor even brought up that it is like DIPG, though she has the DIPG tumor Doctor look at it and he doesn't believe that is it that but agreed this was abnormal. For those of you that do not know the term DIPG it is a type of tumor whether cancer of not that grows in the brain stem and is lethal and there is no treatment to cure it. Children diagmosed with that disease have a 0% survival rate. For her to even compare this abnormaltiy to such severity when my doctor knows I am so educated in brain tumors was really concerming - because I understood everything she said. She is 100% this is abnormality is radiation induced.
I am numb..... I am praying to God is it nothing at all .... but terrified, She will be consulting with Boston and speaking with Dr Yock and MD Anderson as well since they have not seen this before. As if that wasn't hard enough to hear she said its reassurring that he is behaving normal and looks great, then follwed that comment with if he has swallow breathing, you notice him snoring or becoming limp or one sided weakness this is signs that cause for immediate attention to us ...... ( those signs are the signs of any type of brain stem glioma and are all lethal diagnoses because they are non operable, thus treatment only holds it at bay for so long. I am sorry if my last post was all over the place I had 5 minutes to write it and was surely not expecting this news at all.
We just got home to process this and jumped on a flight immediately. The second issue is that the inflammation has grown from two spots to one larger one that does require surgery so we will be back in Memphis for this in the next week or two - THIS IS NOT CANCER AND NOT RELATED TO THE ISSUE ABOVE. Again I can't wrap my head around any of it so please just pray for us and pray to God that this spot is going to be nothing concerning.
All I can ask of you is that this new concern be prayed over and over .... because I want my son to LIVE .... so I beg you to understand that this is scary and real and we are going to be on our hands and knees praying over this ..... we truly ask you to do the same for him. Thank you for all your texts and voicemails and facebook posts ..... My heart is torn tonight and my mind is racing ..... I will write more when I hear more from the doctors.
NO MATTER WHAT GODS HAND ARE ON THIS !
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.
Summer recap since this is September and pediatric cancer awareness month I want to share with you what it truly is like to walk in my shoes today. I have battled with the rawness for this post - but find it so honest that I must post it. 
I feel like I shelter my readers and sound so profoundly strong, when in fact I have had no choice but to pick up the sword and slay the dragon ( cancer ) with all my might!!!! I am strong because God carries me, and my husband is there for me - but it is a struggle that is unimaginable to anyone that has not walked our my shoes. We walk for his 3rd birthday a week before he is due for surgery, a surgery we are still praying he won't need but it is in fact scheduled and I can't help but think of all the children that we lost that will never earthly turn 3. It is overwhelming. I fell in love with too many families, too many children not realizing my heart would be attached to the yo-yo string that is cancer. I have learned through my son's journey, that I love more than I ever thought possible and I hurt more than I ever imagined one could. I long for parents that lost a child to be reunited with them and I pray for cures and God grace to surround them. 
Dear Lord,
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. 
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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I sat there praying for Luca, praying for his family ---- praying about everything and crying .... lots of crying on that bathroom floor, I grabbed my boy and towel dried him and dressed him . Then I went back, I looked at the shattered glass and oil and thought how in the world do I preserve this still .... ? Our human hearts race to find a way to fix what is broken, but like this vial - I could not fix it. But the answer lies in everything we do .... I picked up that glass and threw it away, it was shattered I could do anything to fix it .... I took my hand and carefully sliding it across the floor several times to scoop up oil to get just enough oil contained that the new 10 vials will be able to have a drop of the old "blessed oil" mixed it in when they arrive. No I am certainly not superstitious! But the value of all the children that oil touched made it so special that salvaging even a few drops to carry on in the next 10 vials gave me some peace .... its funny normally I would have just wiped the floor clean without starring at that destruction and coming up with a plan of how to handle this ... but see this is what a cancer parent has to do .... we have to look at the situation and evaluate - how can I preserve this, what can I fix? For me, I could not fix the glass vial, but I could carefully keep just enough of the oil to keep all these children with me .... it wasn't wiping my floor clean, but keeping it going to the children that I will still need it .... and yes it will still have the original oil in it ... but not all of it is .... it carries the past and present and future patients that I need to pray for and anoint.
Back to Grizzlies ....In the last few days I have been trying to compile my thoughts and feelings about this week.... Nicky was great and slept through our flights. Upon arriving by shuttle to St. Judes there was another family on our shuttle bus just arriving. A teenager that was so thin and frail covered in a blanket. The shuttle stopped at the hospital and the man driving asked if he needed a wheelchair and the boy nodded his head. Upon crawling out of the first row I noticed a puke bag in the bald teens hands that he was clenching it as he was trying to get into the wheel chair and his mother trying to shuffle all their things and small bags. I turned my head away and let the tears roll quietly down my face, a truthful reminder that we were in fact at St. Judes.
So the LP was canceled due to the inflammation in the spine and the ABR was done as well as an endocrine lab for cortisol. Nickys cortisol level was exactly the same as before radiation so that was great news. The hearing was a bit different but nothing we weren't prepared for. His right is great, his left has more hearing loss but they are uncertain how much because of multiple factors - the piece they place in his ear could not get a good read because of his tube being packed with wax and the right one fell out so we are needing to see our ENT specialist this week and we think we will probably ask him to remove it since at age the ears typically don't need tubes. In September they will do another hearing test but not an ABR since they do not believe is is totally accurate, however it was a good gauge when he was younger. This news was no shock to us, it was all expected from the side effects of the treatment he needed to cure him.
The last few weeks have been very difficult for me in so many ways. The loss I feel for Kristin, Bree's Momma and her family pains me and in the midst of it all while traveling back home I somehow missed updates and posts on caringbridges and facebook and today while catching up on all my kids I love, I read Brody S. update and learned that my sweet little Arianna had scanned last week, the results were not good and her Lumbar Puncture showed that cancer cells are now present in her spinal fluid. Sometimes I wonder how this world actually exists simultaneously while the rest of the world is moving at a normal pace, unaware. I remember walking into St Jude with rose colored glasses, believing every child there would be treated and healed and my heart was an open door filled with love and compassion for each family I met. I look back at how naive I was, how that approach has brought so much pain and tears with it - but looking back I wouldn't change anything about it because I love them so very much and my life is richer from each child and each family - I hope they feel that way about us too. 
As I told you I would be updating on Bree H. she had surgery today and she out of recovery and awake, I ask that you continue to pray. The surgeon believes he removed it all. Tomorrow she will have an MRI to confirm this. Please pray her recovery is smooth and deficit free! I also ask you to pray that her pathology remains desmoplastic instead of a more aggressive form of Medulloblastoma. Better yet - let this just be benign from treatment.
So, this is the first time I really feel like if you have it - please, please give it. It doesn't matter if its only $5.00, or $10.00 I am listing Gamma's email that has a paypal account to it, any amount you can give to help them right now will work. You can even buy a Bree t-shirt if you want, but mainly its not about the shirts - its about helping this family be able to sustain having a home to go back to in 4 months when treatment is done. If someone deserves a contribution - it is this family. My Nicky is rocking a Bree -T Shirt while we pray that she will be healed and restored from surgery and the treatment process.This is the email address for paypal.