Dexter Lawrence Authentic Jersey  Updates


SJYC07 Protocol at Educating Manipulated Data Radiation Brain Tumor / Tumour St Jude Children’s Research Hospital Study


balloons6Wow he would have been 6 this year. The pain grows deeper than I ever imagined, but so does the love in that 4 1/2 years he belonged to us. 

I get sad when people assume I'm strong, no actually I'm not, my husband picks up the pieces of the new version of who I am.
I can't believe I can't hold him, touch him, kiss his sweet face, dance with him, wake up to him ordering me around - he might have been tough but he was not just my son but my best friend in so many ways that I would have given anything for him to stay. We miss him in our home, his dada misses him too .... His laughter, giggles, dancing and our target or toys r us runs almost daily if it wasn't an online item we were suckered in always gave him everything even if it was a race car track in China we paid - he was one of a kind...... NIck never complained he just let me keep buying crazy toys no matter what we just wanted to keep him smiling - what an awesome husband and dada.
He was and forever will be our Nickybear ....... I miss his cuddles and I miss my boys voice and mostly his hugs !!!!! Not many knew him but our family we knew his many smiles and learned to understand his deafness.
A year an a half later and I still cry everyday. I tell him I love you I miss you .... I hope he can hear me :( 
For the people that tell me how to grieve or my so called pity party - imagine losing anything you love most then times it by 1000% that still isn't enough. I mourn all the things he could be doing, how fun he would have with the twins. Watching Christian play games ..... There is no answer to how anyone grieves but you should never ever judge them to watch my son suffer was the nightmare of my life and my husbands and as a family have to figure this new bullshit normal out without him in photos that he should be in. This just sucks. The twins turned two and all I could think of is the party should have been all 3 of theirs. After all they were 11 days apart. 
We are doing a balloon release tomorrow Sept 20 at his grave site at 12pm. Anyone is welcomed to come that would like to send a balloon and love to our boy. We will be there less than ten minutes so it's just sending some love and balloons to our sweet boy. His real birthday is Tuesday but we choose to do it on a Sunday so more family and friends could come. He loved Elmo so we are doing Elmo colors actually any color is fine let's fill the sky with a rainbow of balloons.
Oakland Hills Memorial Garden
43300 W 12 Mile Rd,
Novi, MI 48377

Near the intersection of W 12 Mile Rd and Novi Rd

(248) 349-2784

He is in the far back in the Orthodox section

A special thank you to the dark blue balloon Kim you always think of him I had it filled for tomorrow. An another very special thank you for my sister Nicole I miss dearly for sending a balloon ready to go it needed some air but they helped me so it can go .... I miss you hopefully he will share with baby wade.
And as always kindly I ask that for one day on Tuesday his birthday you change your profile to his sweet face ..... only 24 hours though some of you leave him up always it is so heart warming to see him and the love from our friends....... thank you for for support always .... and Hetty thank you for this photo..... truly ..... We will never forget all the little things to the biggest things everyone has done including cards and letters still .... thank you for loving our boy ....  Sept 22, 2009 - March 9, 2014

Sky Full of Stars for our bear ❤️

I have tried so many times to update aside from dancing for our sweet boy, but the words fail me because the pain is beyond words. I finally wanted to post the video we used at his service, this has been the hardest year of our lives. I can't completely speak for Nick, but our family has greatly suffered his absence and we can't believe its been a year. I did have one last dance for him but I got hurt and just gaining it back, they are for him but I shared them with you all on facebook. Nicky was so hard, but worth everything we had and for that I know I can say that Nick and I both would have given ANYTHING to have our boy healthy and here. There are no answers and no reason why such a great loss should happen and its impacted us both in many ways. I will keep it short, everything is hard to celebrate when there is an empty seat to my left and our family is not earthly complete. It feels unjust, hard not to be jaded from what we have been robbed of and the twins that really will only know this amazing boy through us and his older brother..... tomorrow it will mark a year, many of you changed your profiles to remind us we are loved. THANK YOU. If you find yourself thinking of us tomorrow light a candle, send a photo online so our litttle boy can watch it glow....... our hearts remain forever broken ...... say a prayer we get through this please.

Thank you for always being there for us ....... with much love for all the support through this nightmare.....

What It Feels Like In Heaven - for our Bear ❤️

My Nickybears Tribute I love you! - our my Bear ❤️

You ARE - for our Bear ❤️

Only Human - for our Bear ❤️

Today is May 22, 2014 - I wish this date never existed because 4 yrs ago I sat in an OR room with family at 4am while Nicky had a temp shunt placed .....


People ask how are you, where are you? You don't answer.... It's because I can't so forgive me I'm struggling between a new Facebook account of not and I can't, because even though we friended so many during the worst days and love were there .... From friends and makes it impossible I feel guilt not being able to post the twins or Christian, but I can't. I miss my son so much it hurts.... its our last photo shoot together above ...

The twins turned 8 months old on may 11th I just didn't see a reason to be happy .... they beat the 8 month curse their brother had .... and it seemed off.

It will be 12 weeks this Sunday since I held my son, I'm broken .... Never the same .... Feel so far away, I visit him and still feel alone..... I am human .... I try to shut it off but this void is unbearable. he has somehow managed to play the song, ALL OF ME everytime I enter or leave him ...

My husband is at times supportive, but it's short lived (grief is hard!)  - he can somehow resume normal things while I feel stuck in a time warp and just wish I could hold Nicky. I wouldn't golf or watch tv shows .... I just dont really care .... men and women are very different.  NO ONE WILL EVER HAVE THE BOND I HAD WITH THIS CHILD .... GOD gave me the instincts when I knew and Nick told me I was wrong ... I knew again and I guess I wanted to believe Nick ... but MOMS KNOW ... its something God gives us. I knew the moment he took his last breath... I told Nick and hospice. This bond is something no one can even touch, its mine and he was mine and we were so in sync ..... I felt him even when he couldn't tell me ... this is something I learned to deal with because the Mom in me hurt I knew what the storm looked like and I could do nothing but love him. While the rest of my world, even my own family said everythings fine and I KNEW .... nope not this time. :(

I promise to not stop what I started and I know we will stop this from happening again my sweetest love of all my life. I pledge to you my eternal love and the boxing gloves won't come off until this personal fight is done .....your Momma won't stop till we fix this baby.....

All my love to you my precious boy!
Nickybear's Momma

For those of you that still follow thank you ..... You have no idea how much energy I keep putting into this and will - Nicky did not deserve this......NO CHILD DOES .... Danny Thomas the founder of St Jude would be so ashamed of the production of a true labor of love has turned into .... its not what he would want and the truth will be exposed ....

Beam Me Up - for my Bear ❤️


One month later, it's been 4 weeks since I held my son. 4 very hard and long weeks.
Looking back to the confirmation that we would lose him,  it was a brace for impact ..... Little did we know the impact would be so extreme - deafening and is with us every single moment we breath... We could do nothing but watch and pray and wait.... There is nothing worse than that feeling helpless for your child. To bare witness of suffering and pain for weeks .... Yet we knew even when it was the worst of it he was finally cancer free.

Many tears, many may wonder the way someone may grieve - well I know look a kitchen shelves without medications and it's a weird feeling. A week ago I noticed  our mini frig that we had to have costco mini waters for Nicky because that's all he drank, was empty only formula for the twins was in it. The pantry, we threw away all the foods only he would eat away as they would be wasted and most were opened. Laundry, I find a sock here or there and it sets me into a spiral.... People ask what's the hardest time for you. Mornings, no doubt. I carried my Nicky down first covered him in his blue blanket and started a movie and then got the babies. It's so quiet now without my bossy Nicky ordering me around. Nick is working again so I'm here with nothing but a of of time to revisit the entire life my little boy had, and what a tough one he had.

I noticed his hand prints on the pantry door and won't let anyone wash them..... This pain to preserve things you really can't hold on to, is intense.  The babies are ready to go to cribs, but for this Momma who had 3 little ones in my room - I can't do it yet. I have learned grief is different for my whole family. I can't block him out, he ruled our days with his menu selections and chasing food for him was all our tasks, mainly Nick, from ordering pizza almost every other day ( it had to be fresh) to subs to McDonalds. I miss toys r us and target runs just to see him give us the thumbs up and say, thank you Momma, thank you. Sweetest words. With a kiss making the sound, Muuuuah!

Looking back, he knew before we were confirmed that. I recall one morning he lifted my blind fold I hate light, he pet my face and kissed me .... I cried, I realized these small gestures were the storm completely coming to take my boy.  Over that next month he kept telling us, "I love you, I love you more" he would wake up scratching Nicks arm and moments that just really told us he knew. If you watched the service - he would always tell us, no cry Momma no cry, or the same to Dada .... As if he was comforting us to let us know it's all good. Those hugs, those kisses were sweeter than sugar.  He would make Nick bring him down in the final weeks.... Dada got some great alone time with our boy.  I will warn you, I do get more detailed so if you find this hard to read, it's ok just stop here.

I want to share with you what happened before he left us .. He actually woke up from being in a state of coma and grabbed his dada's neck - he said dada then said phone - I gave him my old iPhone for games, but he instead wanted to show someone, some angel(s) there in that room what he liked he held it up to the ceilings of spongebob, it changed to a toy he wanted again showing the ceiling that toy.... As parents that KNOW angels are sent to comfort and bring children home to heaven, this wasn't a shock .....just hard to accept. When he put the phone down he pointed up with his right hand as if he was showing us / someone ..... I tried to pull his hand down but he kept pointing up to show me and daddy that they were here waiting.

I felt a pull and told Nick to talk to him because I felt no closure for him. They did for 15 minutes and when they returned to our room ......the hardest 6-7 hours of my life started. This I won't go into detail as it was unreal and painful, I had c-sections, so I don't know what birthing is like but I screamed and moaned for an hour and a half straight almost like laboring him home to heaven .... in a voice I believe only God knew why. I gave back God the child he allowed me to "borrow" because he was clearly borrowed and he was ours ..... Thank you God for trusting us with his child.

I miss his smiles, his smell, hugs, kisses and my little shadow that followed me to the bathroom and would always shut the lights off and sit on the ground and giggle. I miss hearing him waiting for me to open the door after showering, he never let me get ready. I miss cuddling, he was such a great cuddler. I miss having to guess at what he wanted to watch or wanted or how persistently he would obsess over a toy online from toy reviews on YouTube that were impossible to find but somehow I would find it. I miss making food and he never touched it, he had his green tray filled with snacks. I miss his cravings for white Oreo cookies that I had to fake eat and say Mmmmm to that I didn't eat. I miss our routine hug, kiss, high five, fist pow when we said goodbye, our little secret hand shake. I miss him stealing my phone to google mater, mcqueen and whales. I miss watching "believe" on YouTube from the whale show at sea world and hearing him say Wowwwww, what's that!!! I miss him saying that's disgusting when changing the babies. All his tiny silly things like, "Oh man ....."  Or him sign language "I want " and then point to what he want and say "that" with a smile and a thumbs up. We would sign all the animals ...I miss hearing blues clues in my car or Sesame Street counting and the dance we did to the one duck. the last thing he signed to me was "OK" I was so proud how well he was signing. I MISS watching Free Willy Pirates Cove and Frozen for 6 weeks straight, they were on replay nonstop. I miss him asking for his whales they always had to be in his hands. I miss watching him sleep, playing with his hair daddy begged me to cut.  I miss him telling me calling me Mumma ..... I miss him picking out his shirt, typically Elmo or Mcqueen, I miss his toys piled up and that he would notice if one car was missing from his collection we had to find it. I miss him asking "Christian, where are you?" Or "Christian, let's go"  I miss watching them run down the hall holding hands or Christian carrying him, I miss that he started to love mindcraft and infinity because he loved watching his big brother play it. I mostly miss him sleeping with us and throwing his legs on me to scratch them.... Waking up to his smiles ..... My days are so very different without our Nickybear. I miss always having to cut up pizza at every restaurant, I never got to eat and he always sat on my left. I miss he hated socks and shoes and had to have them off in the car or restaurants.  I miss dancing with you especially to the end of Kronk or Madagascar 3 and twirling you around. I miss holding your hands I miss you letting me smother your face with hundreds of tiny kisses and you just smiled and let me. I miss you kissing me and not stopping to make dada jealous and giggle while you held on.  I miss you making me sit in the back seat with you. I miss how excited you would get to open a present or unload groceries to see what I got. I mostly miss you when I look at the empty couch you always sat in every morning and wanted your iPad and hugs, this is where I break down every morning telling him how much I miss you .... I hope you can hear me and feel my endless love. I even miss saying, "1 minute" and you never trusted that and would try to run after us all. As the weather breaks, I will miss the endless bubble machines that you adored to chase. There are so many things that catch me right now off guard and I end up in tears missing you so so much. I miss hearing your little feet running around here, I miss you asking me to call dada so you could talk to him on his phone. I miss face timing you even when I couldn't. I miss having to dodge certain routes because you always knew where we were and couldn't go near target or toys r us without you winning. I miss whispering "I love you, I love you, I love you until I couldn't say it anymore....

I look at the trampoline never used outside and a bike you never had a chance to ride and so many other things that break my heart ..... Dada sent me a video of you today ..... I just cried seeing you so silly and happy in California for your birthday.... The videos are so hard to watch for me because I long to see you giggle and hold you.

We went to dinner, figured we better rip the bandaid off and how hard it is to say 5 and not 6. And that empty seat next to me.  Tough stuff.  I went to look for a new nanny and noticed our ad had all 6 of us on there, I left it up and when it asked how many children and ages .... Another hard hard moment. There will be many firsts that we will have to get through.

People have sent the kindest words, thank you for your cards. Personalized gifts that we will always treasure... Thank you. Meals, and food and diapers for the babies, and so much more.....Thank you for your prayers, they are needed now more than ever as we try to figure out our new normal without our sweet blue eyed boy.

Dear Lord,
Please give our bear all our love, he is missed every second of every single day. Please allow him to show us signs he's happy healthy and waiting for us. Please lord allow cures so no other family endures such heartache and pain.  Through your grace help us to get through each day......

We never thought we could ever hurt so badly ..... but, we are hurting in ways we could never have imagined, his absence with us is so painful  ......we  started a new facebook page for family and friends only because it was needed - it wasn't just friends anymore, it was many people praying and many in the cancer community ..... I have given every ounce of myself to advocating and fighting, but I now find myself wanting to completely walk away, this could be temporary or it might be for good only god and time will tell  - for 6 weeks Nicky wanted to watch FROZEN and I never listened to it until I was talking to a friend ....I told her it was time for me to move on from the cancer world and try my best to enjoy my 3 children .... in the background not yet released Disney radio played this, ....I didn't catch the first lyrics as I turned it up.... they were not for me but this clearly was if you knew Nicky he was never cold, he was a tough kid that was hard ..... it snowed so much that we could no go to his burial site that day,  this has been the coldest and most snow Detroit has seen in 20 plus years  ..... so this was fitting that our current profile will change to his name Nicholas Ashton George and the groups created for families will remain up. I will access it, but not all the time..... I need to "LET IT GO" ... he pretty much said so ...

The video is at the end the first chorus I didn't notice .... its the second one ..... my boy made sure I heard what he wanted me to hear...... thank you Lord for so giving us this amazing child that still speaks to our hearts ........ will never watch this movie the same and now I actually love watching the snow fall .... I have one last task in this community to finish for my son and his foundation and that will happen .... we can not thank everyone enough for STILL sending continued prayers, support, the diapers and wet wipes and even sending Christian who has been through so much a small gift so hes not alone ..... we are truly blessed ...


Conceal, don’t feel, don’t let them know
Well, now they know

Let it go, let it go
Can’t hold it back anymore
Let it go, let it go
Turn away and slam the door

I don’t care
What they’re going to say
Let the storm rage on,
The cold never bothered me anyway

It’s funny how some distance
Makes everything seem small
And the fears that once controlled me
Can’t get to me at all

It’s time to see what I can do
To test the limits and break through
No right, no wrong, no rules for me
I’m free

Let it go, let it go
I am one with the wind and sky
Let it go, let it go
You’ll never see me cry

Here I stand
And here I'll stay
Let the storm rage on

My power flurries through the air into the ground
My soul is spiraling in frozen fractals all around
And one thought crystallizes like an icy blast
I’m never going back,
The past is in the past

Let it go, let it go
And I'll rise like the break of dawn
Let it go, let it go



(updated 11-9-2017)SORRY THIS BS CHURCH OVER 8000 watched it but due to us not returning deleted this - it will be uploaded again..... sorry but the amount of money Brightmoor Christian Church has and they were on my server for years --- wow ! way to go church family! What a great church and leadership!

Our Boys Service at Brightmoor


Nicholas Ashton George Foundation - Mission is to aid against these malicious toxic protocols and the doctors that KNOWLYING keep repeating them and harming other children, this SHOULD NOT HAVE HAPPENED TO MY BABY.

Nicholas Ashton George Foundation
2804 Orchard Lake Road Suite 203
Keego Harbor, MI 48320

If you would like to send a note our address:

Our address is

5215 Clarendon Crest St

Bloomfield Hills, MI 48302


Our boy, Mommas Bear, so tough .... is wrapped in the arms that are NOT mine now .... as I promised him in the PICU when this all began May 22, 2010 I would never leave him and I was able to hold him before, and sadly after for a few hours when he left this earth March 9, 2014 ..... he is free of cancer there is no more pokes and MRIS and bad medicine and trips to hospitals ..... we ran the race and I know that right now Nicky is running again and all the abilities he was striped of he has .... all I ever wanted for him .... just not with us .... please continue to pray for our family and our oldest Christian who has been such an amazing big brother to Nicky .......

Funeral Arrangements

We would like to extend to anyone that has loved our Bear, followed him or prayers for him you are welcomed to come to the service.

Wednesday March 12, 2014

The Greeting will be at 11:00am

The Service is at 12:00pm

at Brightmoor Christian Church

40800 W 13 Mile Rd, Novi, MI 48377 crossroads M5
(248) 668-7000

or Call Thar Rock 248-474-4131

Immediately following, please respect that our family has requested a private burial.

Please again do not send flowers that will only remind me of the smell and fade but if you feel compelled by our boy and all he has endured, you can write make a donation to our boys Foundation. Since we rushed to legalize the Foundation we have not been able to setup a paypal for it so if you would like to send a donation you can send it to mine and we will make sure it goes to the foundation my email is This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Nicholas Ashton George Foundation - Mission is to aid against these malicious toxic protocols and the doctors that KNOWING keep repeating them and harming other children, this SHOULD NOT BE HAPPENING TO MY BABY.

Nicholas Ashton George Foundation
2804 Orchard Lake Road Suite 203
Keego Harbor, MI 48320

If you would like to send a note our address:

Our address is

5215 Clarendon Crest St

Bloomfield Hills, MI 48302

We cannot thank you all enough for the endless support, food and groceries and costco runs and letters and cards and gifts ... even diapers ..... some from complete strangers, and for the time people put in watching the babies .... thank you for showing us we are thought of and our boy is LOVED...... please continue to pray for us as a family during this time.  Please continue to change your profile photos to anything of Nicky and send his website out so that his story continues to touch hearts .... we ask that you do this until he is laid to rest. Thank you so very much for all the kindness ..... its been so so humbling ......


People have been asking about kind people opening P.O.  Boxes - we aren't hiding, though we can't have unexcepted visitors Please.

Our address is

5215 Clarendon Crest St

Bloomfield Hills, MI 48302

We got a card today from an old address on the site from a little girl telling our boy she hoped he felt better and a valentines card - it broke my heart but I won't stop things like that because children need to understand and believe a God is able - he just has his own plans our website has the foundations address below. 

Just wanted to give a quick update - this is so emotionally draining its unreal and overwhelming. We want to endlessly thank everyone that has been non stop helping us and praying for us, we would be lost without everyone. It feels like our lives stopped on Feb 11, we are barely able to get out to get anything and have had to rely on many of you for pretty much everything. Nicky won't let us leave him and it's one of us he wants making work for Nick completely impossible. We have no clue of what day it is as it feels like and endless warp. We are now realizing we have no gauge over how long we will have our boy as he is one strong little fighter. We are weaning him from the steroids as it is not giving him quality time at all. We realize everyone has their own lives and they had stopped them to help, and we can't expect that if this is a longer haul. We are trying to find a solution to help with the babies, even rides for Christian to school and back because we have been unable to get him there a few times because Nicky won't let Nick leave. The hardest part is Nick not being able to work at all and it's bringing so much more stress on top of a very stressful time for us all.

Please pray God finds a way for this us to find a way to manage this, maybe we should hire someone to watch the babies at this point we just don't know what to do. Please keep sharing our sons story and please keep those profile photos of him up, they remind us how many people love and care about our family, our sweet boy.
Any suggestions or know someone that could help full time during this time please contact me ..... God bless

Its is getting harder to watch him decline, yesterday was just unreal and heartbreaking, today morphine is now on the menu and for now its helping, but in my head I can't believe a 4 year old precious little boy is on morphine .... keep the prayers rolling in please, the mean time as I said below, watching his face of facebook as profiles light up and story continues through you all is so humbling, THANK YOU!  The Foundation, thank you to our dear friend Mr. Linnell the NICHOLAS ASHTON GEORGE FOUNDATION is established. Please again do not send flowers that will only remind me of the smell and fade but if you feel compelled by our boy and all he has endured, you can write make a donation now or when the time comes ..... I won't lie saying that makes me sick to my stomach, but if we don't get our miracle here - then his mission here is done and ours will carry on.

Nicholas Ashton George Foundation - Mission is to aid against these malicious toxic protocols and the doctors that KNOW LIVE TIME RESULTS keep repeating them and harming other children, this SHOULD NOT BE HAPPENING TO MY BABY.

Nicholas Ashton George Foundation
2804 Orchard Lake Road Suite 203
Keego Harbor, MI 48320

AGAIN I WILL REPEAT - PLEASE DO NOT MAKE ANY DONATION IN MY SONS NAME TO ST JUDE, that would be a cruel reality after what has happened to my son. STILL AND ALWAYS IN GODS HANDS .....

It's been 15 days since we were confirmed that our world and family as we know it would been changing forever. The reality of it has been so heavy, hospice has been so helpful.

The amount of support and prayers and LOVE has been overwhelming for us and we are humbled and feel the prayers in our weakest hours. We have people that have done costco runs and filling our frig and bringing meals from the sign up from my 2 sisters that they are managing it. We can not begin to thank everyone enough! Another thing we love to see is you posting our site and changing your profile photo to any of our sons photos. - you will never know who you will reach across this globe and we want and need his story to live on ..... Please do this for us.

Many of you are wondering how our sweet bear is and so, as you have taken this journey with us - we want you to know what it's been like. The first few days were scary, he has been tired and fatigue and had moments that really scared us. He was placed on pain meds and steroids. The hope was that the steroids would give him some relief, increase appetite and slow things down a bit. They call it a short honeymoon phase. The first 3 days we didn't see any benefit, the last few it has relieved some symptoms, his breathing is better and his glossy eyes look like him, but short glimpses. We did not get the full effect we hoped for from the steroids, but we got a little more quality time from it. While the steroids have helped, we see him sadly progressing with even the meds, due to where the highest dose doses of radiation hit him on his brain stem, it is effecting swallow, our home is filled with trays of meds and oxygen tanks and auctioning machines..... The hospice doctor told us based on her assessment, he has weeks to days, that was a week ago .... If steroids help weeks to months. The only person that knows this answer is GOD ...... Down to the very second ..... Lord, do not let our boy suffer! I beg you to have mercy.

We are embracing time with him as much as he lets us. We are also in prep mode because we know we need to face what lies ahead ... Haven't we stopped hoping or praying for a miracle ... No ......but we also realize that the miracle might have just been being chosen to be his parents and knowing this intense love and pain ...

Nicks taken on a lot, he knows I'm not dealing with any of this well. While I haven't said it enough to him, I am grateful when he realizes how broken I am. We all are, he is just able to try to deal and put it aside in a different way. You might wonder how is Christian, he's 12 he understands and knows and has been so amazing with our bear.

It is extremely hard to write updates, But I will try. Mainly, I want everyone to know that when the time comes - please do not send flowers that fade ..... Instead we are forming the Nicholas Ashton George Foundation to aid against children being over radiated, this has to stop. It's wrong and it is the reason this happened to our son, honestly I knew October 2010 but prayed it wouldn't be so, if you followed our journey errors were made ... I spoke of them back then. Since I have ran the largest group for my sons type of cancer, over 450 families world wide, I know this was not a relapse and I know God did answer that prayer. However, we have watched these horrible radiation induced changes for a year praying. I can't tell you if we will have the energy to be an active organization quickly, maybe in time and maybe it's just for this moment in time since I know families working towards this. I can tell you that I have been actively prepared for over a year to disclose information when the time came, but feared I may steal hope from families and so I protected them and now I will ensure this same mistakes will never happen to another child. Please do not make donations to St Jude on behalf of our boy - it only aids them to keep doing these highly toxic trials to learn from. This approach from the doctor that hid from us will be stopped.

This is one of the hardest posts I have ever written, and I apologize for the delay....but we as a family needed time to process it all and be together.

As a parent, the moment you learn your child is fighting cancer, you realize that it never ends after treatment and that we are always living in the moment fearing the next scans. Nicky has endured from 8 months old brain surgery that left his left vocal cord paralyzed, he coded 3 times fighting for his life. He has endured 4 doses of high dose inpatient chemotherapy, followed by 30 rounds of radiation and then 6 months of oral chemo. Nicky's blood counts from all the treatment really never recovered fully. We kept him isolated to keep him safe. Looking back, I wish we would have allowed him to do more but I was trying to protect my son.

His MRI on Tuesday showed the shunt was working, this was when we knew the day any cancer parent dreads hits you like a bus. A call from his local neurosurgeon happened the moment I walked in the door with him. The nurse calmly said, I have news ..... There are 4 new lesions that were not present on his August MRI. They are large and the doctor wants you to do a spec test to tell if it's more damage or cancer. We mailed our scans to St Jude and to Boston. I spoke to St Jude last night and our primary somberly said we should start him on steroids to calm the horrible effects we are seeing and to do a biopsy. We discussed that Nicky's not well enough to travel and I asked what would the biopsy do, she said it will just tell us what it is either necrosis or a radiation induced secondary neoplasm malignancy. I said so either way there's no options. We have known this for over a year but now it's happening. She said they do not believe that HBOT helped because it's all gotten worse. The locations are not operable as we have known that for over a year watching this happen also. They do not believe it's his initial cancer because his cancer was aggressive and it would have been far more aggressive.

So today my sweet bear will begin hospice. We have no idea how long we have with our son. We just know he declined quickly. Within 10 days he had balance issues, to falling everywhere, to breathing heavier, his eyes half open and fatigue. We have to carry him everywhere and we are heartbroken our spunky little man is not the same. He's in pain so meds started to keep him comfortable. He lays in front of his big brother while he plays and lays on our couch most of the day. Naps are getting longer. This is so difficult.

Some people are reading this are thinking we are giving up, not at all. If there was anything we truly could do God knows that would not compromise his quality of life anymore than we already have - we surely would already be doing it. But our son's quality has been compromised from treatment we know for a fact he was over radiated and sadly our doctor at St Jude has abandoned us and has never spoke to us since Dec 2010- he has a grade 4 hearing loss in his left ear and a grade 3 loss in his right. He can barely communicate because he can't hear everything the way it sounds. We are left guessing what he's saying and he get upset because we can't understand him. He stopped growing this year which means he most likely has endocrine issues that would require daily shots. - and tantrums that he doesn't understand no or why that last 45 mins to an hour or more . Quality of his short little life has always mattered more to us and keeping him happy and comfortable. When we went into the hospital and they handed scrubs to him he screamed and it breaks my heart what he endures and can't understand why in the world do I have to do this.

I ask God the same thing ...... But I won't have an answer. What I know is that Children are a precious gift from God and God lends them to us to teach us, to make us grow to learn to truly love unconditionally. God, is clearly calling my baby home and we are devastated. God blessed us with such a sweet little boy, but he never promised that we could keep him or for how long, because our Nicky is a child of God. There is nothing worse that a parent can go through, I know this because too many of my friends have lost children and I walked them through the process and helped. I truly don't know how to live without my Nickybears face everyday - his sweet kisses and telling me momma no cry, no cry and hugging me. This intense pain is surreal and we have no gauge on how long at all.

So many of you are praying and we ask you continue to for us all because As we walk through the darkest valley, I will fear no evil, for you are with me says our Lord. And so we pray for unimaginable strength and comfort for our Bear.

So many of you have given us support and ask what in the world can I do, you can pray.. And then pray even more as our hearts are forever broken. When we get in a pinch maybe come hold the babies so we can focus on all the time we can snuggling our Bear. We've already had dear friends load up our frig - thank you so very much the Scalise Family. And Uncle Nick Thomas, thank you for the movies - they came just when we wanted one the most today.

Please know if we don't call back or text or Facebook - we are really trying to cope right now and your support means so very much to us. We will forever be in debt to you all for everything.

I want to thank God for allowing Nick and I to be Nicky's parents,we couldn't love him more no matter how hard this journey has been and will continue to be. I want to thank a God for showing us under the worse pain imaginable that he gave us 4 years to love this little boy all we could and will continue to. I have always said, Gods Hands and now I realize he soon we be in Gods Hands, and while our human hearts just selfishly want him here .... He will be with our Father, no better Hands to be in- I guess that's arguable because Momma and Dada think we our arms are a great place to be - oh Lord be with us all.

So over the weekend Nicky's balance seemed off, Super Bowl Sunday Feb 2, 2014, he fell twice - putting me in panic mode. Monday at 9am I was calling our local Neurosurgeon and leaving messages, also emailing my primary at St Jude. As luck would have it they were all out of town. So Tuesday morning Nicky woke up moaning and pointing to his forehead and seemed fatigue. The Momma bear that I am - I don't wait - I act and took him to ER. They let me access his port and draw his labs which was a comfort to us all. When they ordered a shunt evaluation, I requested a full brain and spine MRI - I wasn't willing to sedate him twice and wanted both. Well 14 patients ahead of us, they wanted to admit us - seemed silly to me when there was no reason a child already NPO ( no food by mouth for at least 8 hours) to stay there for nothing but wait.

We chose to leave, the following day Nicky had a decent day but still not himself completely. Last night who knows why but I placed my hand on his shunt while he was sleeping and felt a dent. It was 11:30pm and two long days but I wasn't willing to let this slip and was calling his NS ( neurosurgeon) immediately. She told us to come in yesterday around 11am. So once again afraid they would want tests my tired glossy eyed fighter screamed I'm hungry from 12pm till 1pm ....our doctor was in emergency surgery so we had no choice but to wait. Persistently ... Yes we waited while the entire floor of 40 patients at Rose Cancer Center heard him screaming. Long day! So she evaluated him, she told me that shunt patients are coming in with the bromic ( might be the wrong word) but drop in weather with it being so cold is actually contributing to shunt and balance issues. She also said its cold season how is he.... I said just getting over 2 weeks of an ear infection and from that the flu but he's eating great. She said that's a great sign, she said I know you so we will get these tests done ASAP. So this Tuesday Feb 11, 2014 we will have a full brain and spine MRI and shunt x-ray evaluation.

I find comfort to drive 20 minutes away to a hospital that will let me prep his port for sedation and pick him up and go home. I am fried having to board planes to get to Memphis and jump on a shuttle and pull into those gates that I lived in and saw so much immense pain - it still is surreal that I lived through that and continue to. But for Nicky, I can't believe what this child has had to endure and continues to. While there is the comfort of knowing the faces of staff at St Jude, after almost 4 years we also know what it's like to sit in e clinic waiting for results and then the dreaded, hand wave " let's go look at the scans......." It's like dooms day when you don't get the thumbs up or all is good then hey you want to see?

The last year and a half has been stressful wondering ... So I guess fedexing the MRI to St Jude this Tuesday we know it is slotted for review on Feb 12, 2014 at the weekly BT meeting. Of course we are already dreading the St Jude call light up my phone, but it's better than boarding a plane a wreck not understanding what they are interpreting or seeing.

So, are things good? Mmmmmm, we just want our son to be ok - we need extra prayers this entire week and oddly we are just hoping its a cold or a fixable shunt issue and that we will still hear the news we have been waiting so long for which is he's NED and changes are stable or better !

We rely completely on you ......completely - please be with our family and have your hands on our Nickybear! It is through your son Jesus Christ that took all our burdens to the cross for us all...... I ask you Lord to give my Nicky back the energy and balance he had and to restore him because he was created for your glory and created in your image.
In Jesus' name AMEN

We will report to you as soon as we can, remember we have 3 teams so it's not just Jude we will wait on....thank you for being with us always ....


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