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What a horrible feeling today has left in my heart ..... I woke up and fed the boys and while going about my normal routine of tossing toys and Nicky into a bathtub of bubbles, I glanced down at my phone while it downloaded my emails .... an urgent update came in on a beautiful little boy from my protocol Luca P. it was titled "Breathless" ..... I read it in a panic mode, my heart truly was racing to understand that title ..... and then it came .... that he was admitted for pain during a routine visit to St Judes and that the tests revealed that the cancer has spread to his bones and lymph nodes. That there was no cure and that they were returning home to love there little boy and that his time here is short. I won't lie, I buckled at the knees on my bathroom floor, my purse half emptied from cleaning it and I cried uncontrollably. I was such a wreck that somehow my hand slipped across the counter slamming this tiny precious vial of oil that a dear friend sent to me at St Jude. The vial carried oil in it, blessed anointed oil, oil from heaven of which I have been able to anoint many babies and children with at St Jude and when I fasted in prayer and on Nicky before each scan, even blessing gifts sent to other families..... it laid shattered on my bathroom floor. To me .... I was understanding her title "Breathless" .... I also felt shattered like the glass laying across the floor. I panicked and text my friend asking where she got it, that I needed another vial ASAP .... The place she bought it at I called the church they had no record of it ... I searched online until I found it .... the same vial, the same oil, virgin olive oil from Israel ... except it wasn't the same - it wasn't blessed?!?
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.
Today my faith is tested far more than it has been .... you see, there is always that one parent that tells you they know their child is healed - every fiber of them believes that - and for me out of all those Momma's I have ever met Eva... Luca's Momma was and is that Momma. She told me my updates upset her, scared her because I talked about the children I have come to love that need prayer. Eva, you have been a terrific mother ... you probably won't read this post because you know that it's about Luca ... but if you do .... I believe so much - because you have. We had conversations and got to pray together once on the 2nd floor at St Judes in Feb before Nickys scan 2011 .... I told her today - I want to pray against all odds because believing is all I know how to do for Luca, and it is still. So I don't know how to pray exactly - I know that its really bad and hes in pain so please pray that God shows mercy and allows no suffering ...don't just read this - please pray for Luca and his family ... God Bless ... ANG
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.
