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Below you will find a post I have re-written 5-7 times from the last few months adding, changing and evolving this post - but I ask you to have patience and read it.
Today Jan 6, 2014 we had a flood that has taken over our time and we took down our Christmas tree tonight, something I hate to do - it means another year is gone and while I am so humbly grateful for another year and all the miracles it brought - the cancer mom in me dreads knowing what the next 365 days will hold and will this time of year be our amazing family of 6 that we now have for 2015! While taking down the tree I reflected back to a moment that hurt me and still haunts me the most - the date of f Nicky's surgery and the one moment that honestly made me pass out. I recall only a few things clearly - I remember watching my 8 month old whisked away on a gurney and not knowing what would happen or if he would make it - I remember our youth pastor Steve Amaro sitting there the whole 6-7 hours reading verses to encourage us - I remember David Strange and his amazing wife coming to drop off snacks for us in the OR - I recall the most vivid memory being a young man in blue blood stained scrubs walking towards us and my heart pounding - I thought as he walked towards us and I realized he was wearing MY SONS blood - I thought my Lord, please don't let him be dead! What a horrible moment - and all he came to say is surgery is going well and it shouldn't take as long as expected - the vision of him and the stress - I passed out for the remaining time until I heard everyone silence in conversation and say they saw our surgeon - I jumped up scared but when she smiled I just buckled at the knees and gasped as I hugged her thanking her - I got it all is what she said.....
Fast forward :::::
So much is happening so quickly! Where to start !
Well we finished dive 40 out of 40 of Hyperbaric Oxygen Therapy ( HBOT ) on December 27th - No regrets, they said after 20 is when the changes happen - I have to agree, he has a growing appetite and since his new ear molds ( for his hearing aids) came in its started with 20 -30 minutes at a time mainly with us working with him on flash cards, counting or alphabet etc with us or his nanny. It's been amazing when he walks over and hands us the hearing aids excited to put them in and we do intervals on his terms and extend it by saying a few more minutes, he will forget they are in and we might get a 15-20 extra minutes. Sounds missing are surfacing when I go through flash cards, colors, animals, shapes - it's been exciting to watch him learn, remember and be excited to put the hearing aids in.
Since shunt surgery he was anti water, showers baths and we would get him to swim though.... Well I am excited to say we can't get him out of his baths! He loves helping me give the twins baths and now he loves them once again. Isn't God AWESOME!
We also have been able to hide vitamin D drops since his labs showed a vitamin D mild deficiency- so Gatorade in a syringe mixed is what happens every morning now. We also switched it up and do a few 2-4 pediasure 10ml syringes to make sure we are getting some of his nutrients he needs - we have consults once again with Dr Wallace the worlds best nutritionalist in the country for children that have had radiation and chemo and though we are taking small steps to ensure his comfort level .... He's been eating so well lately. Dr Wallace and I spoke last September, some of you may remember that she had us try the boswellia and once it wasn't working we stopped. It's hard to hide things with a picky eater but we are getting it down to a science lol. We haven't tried to add any of her additions, we are waiting on this scan before we do anything.
Many of you know I read all the newest study journals to be on top of Nicky's care in fact I have had the privilege in my life to mentor so many families, I am grateful for each family!!!! I had the honor to meet one when I was in California with the babies. I am truly blessed. They say God prunes your life through lessons - we don't know Gods plans - I watched a woman on Saturday Dec 7th at a lunch for Life Challenge preach and she said just that. Jeremiah - I have plans for you while she said "I know Lord", she heard Gods voice said it 3 times and kept saying "I know Lord" by the 3rd time she paused and heard The Lord say, " I never told you what it is" that was a profound statement.... We feel in control, so we think ....but the truth is HE is the only one that knows that plans and how the story begins and ends. I am personally grateful for all the people and children I have had the chance to love, I am grateful for the pruning God does. At first it hurts, but then the truth is revealed and HE has removed people that we're not good for our children our family and our home, especially Nicky.
We had a small delay due to my own ear having a ruptured blood vessel in the HBOT tank and it was so painful. Again, I immediately thanked God for stopping me 3 treatments in to get Nicky tubes again because if he experienced this pain he would never have gone back and he LOVES his dives at HBOT and loves his nurse and we are just grateful for this experience and Gods Hands showing me what to do when I didn't know why. We had a great Christmas and watching Nicky truly enjoy it and understand it was the best gift!
On a different note some of you know I took ASL American sign language in college - along with our school district we have chosen to do the class that speaks and signs and all 4 teachers including on one that's deaf was glad I was dedicated to both. This is a good choice for Nicky and Christian and I will be taking classes ( I need a serious brush up and our whole family will now learn signing) we start January 27th - this is good for us all. Nicky starts as soon as HBOT is over, so before we do but I will be attending classes with him. It's such a good fit.
Does Nicky need sign language ? NO ! He's in a speaking classroom BUT I believe it's beneficial to get him to learn both ways to communicate and I am happy to bring it into my whole home, he says things we are guessing at, like today he pointed to something and said yuk -- ewh - that's disgusting! Now the word disgusting is a new one and it wasn't clear enough unless you know him what he actually said.
So the looming scan date approaches and my anxiety kicks in, how can it not for over a year we haven't just heard scans great see you in 3 -4 months - there have been concerns and while in March the shunt fixed 2 issues, the fluid edema in his spine was gone last scan and his ventricles looked better - however the radial changes have slowly gotten worse is all we are told. It's never even a conversation about his cancer or original diagnoses - but instead and entirely different oddity of changes that match his radiation field. We are concerned, Nick and I deal with our stresses in very different ways and so it's almost as if a division in our own home creeps up on us while the date of the scan approaches. We learned that Nicky was over radiated by 12% per his planning, though our primary Radiologist Dr. Merchant will not even take responsibility for his planning and Jacksonville, I doubt they are aware of all the information I now know and it seems a waste to even speak with them since they wait until they hear Jude's opinion because they don't want conflicting opinions. Everyone from both institutions are aware of their mistakes and yet the only reply I heard from our Nuero Onc is that Merchant thinks we are pumping Nicky with all kinds of supplements. As I said before, he's picky we get vitamin D with Gatorade - I wish we had the ability to give him more but he can't take pills and it limits us to finding oral ways and I can't force him to do it yet. He's been through enough.
With this being said, all the side effects we have been told to look for over the last year, snoring, trouble breathing, choking, paralysis on one or both sides, fatigue or balance issues. The only thing we have seen concerning was balance after he had a virus and here and there it seems a little off, but our home is much larger than the one floor and the ceilings much higher echoing - so different than what he was previously use to. So am I over analyzing him, it's hard to say when your waiting for very scary possibilities. We believe that if it was anything at all serious after a year we would see much more concerning issues - but that doesn't mean we aren't concerned it could be a slow shunt issue and when it seem to improve we canceled the CT scan locally because it's not gotten worse it seems a bit better so this next scan clear has us on our toes praying Gods Healing mercy and grace is poured over our Nickybear every single day and that he remains disease free! We pray these changes are resolving after our attempt at HBOT.
I was told not to expect anything drastic on the next scan, however how can any doctor say that when we are talking about changes no institution has yet witnessed. Maybe they don't know the power of prayer that I ask you guard my son with this very moment and please continue to. Maybe they don't know like I said above that God has a plan - and no we don't know it - so we must endure sitting in the dark and waiting on The Lord. He is our light, our HOPE and we will continue to pray for our miracle and that the words "God's Hands are on it" truly are on our little boy. Not just today but every single day. Keep in mind Jan 22, 2014 is our scan with many prayers we get the news our hearts desire.
Lastly, we had panic mode as we decided to go up north for New Years. Nicky wasn't eating and it got worse and a slight fever I could only gauge by touch since we were in the mountains in a cabin away from the world. The following day I gave him Advil and he spunked back up and I thought as a precaution to give him one more dose before bed to avoid a night fever and ten minutes after he took it, he vomited it up. This was the first time since treatment he's thrown up and I was a total mess and just wanted to go home! We made it through one more day as he woke up with an appetite and energy that was increasing. We came home a day early and his appetite bounced back but I wish he would go through a chubby phase again those 3 days of not barely eating I know wiped that one pound off him we worked hard to get! We didn't see his doctor by the time we got back it was clear he had the flu or a virus.
I won't lie it didn't help the scan anxiety! But again we can only pray to our Lord he is going to be fine. From our family to yours we thank you for prayerfully lifting our boy up and please continue to! We hope your Christmas and New Years was wonderful and filled with the Lord's magic!
Dear Lord,
I lift our son up to you and all that 2014 has in store for our Nickybear..... let us have peace going to St Jude and let our efforts be healing to his body. We know you are in control and place our precious Bear in your Hands as I have always said, "God's Hands Are On it! I ask that you hear our hearts prayer that the fear will be replaced with good news... You are a merciful and all powerful Lord.... all the glory be to you .... touch all of our readers and bless them this up coming year ...In Jesus' name, AMEN!
