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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.
To start this Sunday we fly into Memphis to arrive at St Jude's to head to the medicine room, which acts like an ER after hours there so that Nicky's labs are done and he has been assessed for his MRI. His MRI is Monday morning so here is how we ask you to pray: that he remains cancer free, that the inflammation they saw as stable in his spine will be gone or greatly improved - that no infection will be present in his body - that his hearing and vocal cord are restored completely. Our Lord can do it all so we ask you to pray these requests for our Nicky.
(photo above in October a legofest) To update you Nicky has been a joy, growing ( 3 inches in 3 months lol and 3 more lbs too ) he is happy and loves to cuddle. He knows exactly what to do to get what he wants now - he solves everything with a hug, kiss and a big Muah sound lol. He is really funny when he is done with anything, or doesn't like the channel or doesn't want to be somewhere he waves and says, "BYE" repeatedly waving and looks at us like get the point lol.
( This is a Halloween moment) He has mastered iPads, IPhones and APPs , he can take photos and videos too and its mind blowing he knows how to get to his favorite games and plays them and has a thing for YouTube, even when we delete the history he somehow knows how to find these CAR Disney Pixar toy reviews! Crazy! His memory is spot on!
He also loves to wrestle with Daddy and Christian. This Christmas he was so into opening presents, all you could hear him repeating was, "Whoa Whoa, what's that?!?!" Oh Oh ... What is that!!! ". It was really cute to see him so excited and honestly trying to rip open everyone's presents lol - he surely caught on this year!
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.
As for the holidays, we are grateful our son has enjoyed them and that we are all together. I am constantly reminded of the parents entering and dreading the holidays without their children. For some it is their first year without them, others its been 2 years but feels even longer. I can't help but cry because I can see their faces, each one as I write and my heart bleeds for each family. We have many children so sick and some on hospice --- long days for these families praying for one more day every day. It's difficult to not mourn with them for them and still balance being grateful for how far we have come. It's an emotional roller because of the love I have for these families and children.
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.
I will close with this, a Momma I love that lost her son this summer sent an email to me a few days ago. Her company is matching every dollar up to $25,000 donated to a 5k run with all proceeds going to St Jude brain tumor research. That gives them a chance at raising $50,000. I was choked up when I told Nick about this - it seems that finding a cure heavily relies on the parents effected by their child's diagnoses to carry the burden - it was said in another interview from TheTruth365.org from parents losing their son - it becomes the responsibility for us as parents to pound the pavement to raise awareness and funds to help our children.... That comment stuck with me reading Luca's Momma's email. I told Nick it hurts me to see parents that lose their child fighting so hard for us still to have a cure, yes they do it to honor their children that they greatly miss - but they do it so that they carry out a mission placed on them - truth is it should be everyone's responsibility to pound the pavement and it shouldn't take parents of a child who passed away to carry us all. How many times have you heard me says 46 children are diagnosed a day? 7 die everyday. While on Dec 14, 2012 our nation watched in live time in horror that 20 innocent children were gunned down among the adults in a senseless unthinkable crime. While I can not imagine a massacre in such magnitude - I still can't imagine 46 children are attacked by diseases that have no cure - that children are tortured through unthinkable treatments while parents pray that the drugs or radiation will be a curative.
So while Facebook is lit up with gun control comments, can't we try to focus on awareness for cures for the 46 children who will be diagnosed today and every day there after until we have truly found cures.
This is Luca's 2 minute video - I hope you will stop to watch it and if you have funds donate and if you can't - pray - pray that 2013 will bring amazing cures that God will gift researchers with the treatments these children need!
Deadline
Donations should be made before Friday, Jan. 18, 2013.
To Donate by Credit Card click:
https://www.paypal.com/cgi-
To Donate by Check:
Please make checks payable to: “Spectranetics Corporation” and mail to:
Spectranetics
Attn: Sue Marquardt
9965 Federal Drive
Colorado Springs, CO 80921
Thank you so much for your continued thoughts, prayers, support and generosity! Kisses to Heaven, to Luca and to all the little angels who are with him.
I will try to update from St Jude when we arrive or on Monday after the scan results! Please again pray for our NickyBear and every child fighting a life threatening disease!
Dear Lord,
Thank you for all the blessings you have bestowed upon us in 2012 and we pray for 2013 to be a year of healing, renewing of our hearts and continued compassion to be the voice for these babies. We ask you to bless our followers for their prayers and sometimes praying on our behalf when I crumble over news of another child gone too soon. Lord give us the strength to continue to support other families and to grow in your faith daily. We seek miracles and we know you are a God of miracles ... Please keep our Nicky cancer free and without inflammation! We give all glory, honor and praise to you and we thank you for each person that is reading this blog ....In Jesus' name Amen ...