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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 .....

mommabear


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 .....support and love were there .... From friends and strangers....it 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. :(

Nicky,
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 ....

 

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

 

 

Nicholas Ashton George Funeral from Brightmoor Christian Church on Vimeo.

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

 

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 repsect 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 KNOWLYING 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 ......

 

 

Our boy, Mommas Bear, so tough .... is wrapped in the arms of God 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 and Daddy too before 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 .......

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 mircale 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 KNOWLYING 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 !

God,
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 ....

Ok short and quick update.... we were to leave this week to St Jude for scans on Jan 22, 2014 ...

However I emailed Nickys NO and asked if there was a way to do clearance the same day and told her our winter vortex left us down to one car, now none because even mine has an issue and that the ceiling leaking last week left us with crews in and out with plumbers and heating and cooling crews to follow. Thank you mother nature for this dish of FUN!

I also mentioned he finished HBOT on Dec 27, 2013 .... so her reply was let's wait a month?!? I was a liuttle shocked we were scanning every 2 months and its been 4 now. I asked if she was comfortable with the wait and she said its standard to wait 6 or more weeks after HBOT.  Where was that memo? lol they knew we were completing HBOT but no one raised this point. I then called a close friend that has been down this path and she too said, I would wait, why worry yourself when it takes a few months for HBOT to start showing changes. Well that was enough for me to say OK ... you mean I dont have to be stressed right now? YESSSSSSS.....

We tried to shedule in Feb but she is gone until March 3, 2014 so March 5, 2014 is our new MRI date .... please still pray .... I will keep you updated once the actual itineray is in my hands and its set. With that being said it's like a cruel joke that Nicky ALWAYS gets a bad ear infection right before we leave to St Jude.... well he's got one AGAIN and antibiotics it is - its like clock work to get one exactly a week before we should go.... HAAAAAA... not this time date changed ......

Lord,

Heal our Nickys ear and keep continue to let HBOT heal his body .... thanks for the mini stress break and keep your hands on our love!

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.

2014.1
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  !

2014.7Well 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!

2014.2

2014.5On 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.

2014.9

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.

2014.3

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!

2014.8

4

cake2First of all wow ... time flies - the twins were born September 11, 2013 and at 33 weeks premature. That left me in California, once again living in a hospital in the NICU without my family for 2 weeks - extremely hard on me but my hubby finally brought my boys to me for Nickys birthday... yep Nicky is 4 Sept 22 we spent go carting and acarade and firehouse chicago pizza and balloons and presents and madagascar cake and we finally got to sing which he LOVES! Thank you Jesus! Wasn't exactly how we wanted to share it but, we were all together that is all that matters! We had to rent an RV, my dad flew down to drive with nick. The drive was 39 hours to get home due to altitude the babies could not fly.... thats the fastest way to some it up lol! This bring us right into October that seemed to fly by ...

ddaSo very sorry for the delay in updating, it's been a busy time for us all! The twins are over 2 months old and Nicky has proven to be a great big brother! Who knew ? He likes to point out what he thinks they need and when one cries he's like awe baby and kisses their forehead! Heart melting moments truly. It's shown a mature side to him being around them and it's been amazing.

hbot

We started dives at the Oxford Hyperbaric Oxygen Therapy center. I know I mentioned we were looking into it but my mind was certainly made up after speaking openly to a radiologist about Nicky's situation. I was bluntly told that while Nicky exhibits no side effects from the radial changes / damage, that eventually if it doesn't stop that he will. All of our teams, meaning St Jude, Boston Mass and U of F all believe this is the least invasive way to attempt to stop the damage - in no way at all can these treatments harm him - in fact it could benefit him in many other ways. The treatments are not covered by insurance but that's a risk we are willing to take in order to prevent any further damage. The treatments are at 5pm so everyone's home for me to take him or Nick, we alternate. So I couldn't be happier that he walks right into the clinic we switch to scrubs and pick a DVD and we has been amazing the 11 dives we have done. Halloween came and gone the weather was horrible so we spent it at HBOT instead.

halloween2

It also worked out well because of Nicky's school schedule. His IEP evaluation was delayed due to his old nanny not willing to email the excels on him to me and made us wait 3 weeks to get a binder that is already completely a waste because he's doing more and more daily and she clearly didn't update it. AS to why she wouldn't email them, only God knows, but we are grateful she is no longer in our little mans life after doing this to him.  So I had to redo them all so his Eval could be done - two teachers that will come to our home again also to work with him. He will be part of the hard of hearing program. We already know he qualifies for hearing and speech which is exactly what we needed. They will pair him with another child to work on these tasks. I will be there with him most of the time, which is great because I will know exactly what to work on at home.

So could we do these dives 1hr 30 mins long for 40 treatments and it may not change the radial changes - that's a possibility but I believe in my heart I have to follow my gut and God given instincts and do this. It's our time, our energy, our love for our son to try all we can to make the best choices for him at all times.

earsI also forgot to mention that prior to starting HBOT we were told he needed his tubes put back in, and we did that after 3 dives and we are so glad we did he feels no pressure at all! So we are placing our hope in God that these treatments will only heal our little guy.

We got referred to Oakland County for Nicky's hearing through the school and he will have a new baseline done here and new lighter smaller molds will be made finally for his hearing aids. The school will be working with us and him to get him to want to use them - currently we had them turned down by 25% to ease him into liking them. They were so loud he would hide or cry and all the audiologists have told us not to force him or he will hate them. So now that we have a team from Bloomfield Schools working with him directly - we know eventually we will get there but on his terms because we do not want him to hate them or feel forced.

So we will be returning to St Jude for his scan that is Jan 22, 2014 - while I hate Wednesday scans at least it will be reviewed at the Brain Tumor Board meeting that day.  We are praying our hearts out that these changes heal and that our son remains cancer free. We ask you to please do the same and that Gods almighty hands are on our Nickybear!

Dear Lord,

Keep your hands on our Nicky and let these treatments help him daily. Please keep our precious boy cancer free and let him be healthy and well .... thank you Lord for our family !!!

game

 

Sorry for the delay, there were many calls with doctors and still no solid answers as to why these radial changes exist. Nicky remains a happy silly boy and for that we are grateful.

I know I told you I would not use this as a family blog, but while we were in the midst of possibly starting HBOT treatments 5 days a week 2 hrs a day for 8 weeks to help those changes...... God tossed us another surprise - On Monday Sept 9th at 10:30pm California time which is 1:30am Tuesday Sept 10th my phone was going off and Nick noticed it around 3:30am ..... the words "my water broke" from my dear friend who has been carrying our twins for us and the panic that I felt after not sleeping for weeks over Nickys scans - all I could think is this can not be happening shes only 33 1/2 weeks pregnant! Well it was happening and I packed the whole night and flew out that afternoon only to make it around 8pm out to Cali, then while trying to stall labor - apparently our daughter had her own escape agenda and we ended up in the OR for an emergency C-section and our Daughter was born on 9/11/2013 at 4:24am at 4lbs 2oz and her little brother, our 3rd Son came at 4:25am a minute apart and was 5lbs 2oz and they were tiny and well but needed time to grow .... I have been out here ever since and missing my family in the worst way .... finally Nick brought the boys and we finally were a family of 6! Gods timing keeping me away from mainly Nicky left me a wreck but hes been so sweet to the babies and kisses their heads and says I love you since I love them isn't something hes use to saying yet lol.  There is so much to tell .... but I just needed to tell you to pray we come home early - Nick and I are tired of hospital living and boy has our family done a lot of that!

I will update more on NIcky with the treatments and yes with photos when I can I just can't from a lobby computer! Thank you for your continued prayer, we really need it ! Also pray for complete healing for my friend she went through horrible labor and then knowing it would be a csection - I have to believe she did all she could to try to get me there in time - my heart is filled with a love for her that no words could ever give justice - she gave us the most precious gift through our Father Above! 

 

 

 

Once again our results are just confusing and give no true answers at all. While no one thinks that Nicky has relapsed, St Jude said that the radial change has gotten worse in the brainstem calling it edema / radial damage  -  in his ventricles and spine have cleared up completely, so the shunt did fix the CSF issues.  Our news really is no different than it was in June except its slightly changed more and they did a spectroscopy and the cellular activity was normal so it gave us no more information - it's frustrating not knowing what this change is they and they can not do a biopsy in this location -  again our team does not believe we are dealing with ependymoma, we just have to watch and wait and hope whatever it is resolves itself and heals itself  - scanning in 4 months because I'm sick of rushing every 2 months down there with a child who shows no symptoms and they have no plan at all the only thing that was brought up was HBOT - because they do believe its radial damage - so I'm my opinion it's just mixed concerning results with no solid answers....  I have had people ask me how are we doing .... are we are stressed? Yes,  but we are living life no differently and we will keep praying ever harder for these changes to resolve. I do miss those simple scan results....

In the mean time, Boston has us slotted for a full view By Dr. Yock and we are hopeful that she will be able to give us more information than just telling us to sit back and wait....

God has a plan though and we will focus on how great Nicky is doing  - because we is doing really well. This photo below was last night, TENT TIME with Christian they love making tents. We are now focusing on our bambino's that will be here soon and pray for a safe and healthy delivery....

tent

Please continue to pray for our Nicky .... I also want to ask you to pray for Arianna and her family, she scanned the same day as us and the results were devastating with a new tumor at the base of her spine, this little girl has been such a strong fighter - Lord Watch over her!

I wrote my update about us leaving Monday below this one-- its 10:36pm Sunday .... it has been a really long day .... sometimes its just tiring .... I think I hit the wall when my oldest wanted to make something in the oven and almost burnt his hands and I waited with him with tears in my eyes and finally hung my head and apologized for all the times I am weak - is it fair for a 12 year old to console his Momma?

I was sad today and haven't slept well in I can't remember thinking about Nicky being poked and keeping it in and managing the daily routine they expect of him and thinking I AM SOOOOOOO "Bllllleeeeeep"ing sick of this @$#%!  Can I be human ever ! Then My dad called to pray with me and I could hear his tone how sad he was for me - wishing he could take this from me and he can't ..... while I could barely breath through my tears and I just kept saying I am so sick of him going through this and being so afraid.... I hate cancer ..... I know my Dad knows  how painful it is to hear me crying and not be able to fix it for me .... its the same way I feel with my Nicky ....and my summer has been consumed by it, yet we truck along make plans, smile and try our best to ignore the beast that is considered a possible passenger we never want to ever endure again.

I was sick to my stomach reading an update of another mother today that lost her teenager 6 months ago ..... the local paper, nor the school, or his frieneds even recognized his absence from the gold league - something this young man LOVED  and what a horrible feeling for her to endure, and Aaron Bell is her only child ..... I found myself so emotional over it ... sad .... I told another friend I mentioned I had to go to St Jude and they said again? aren't you done ...? WOW .... I sure wish there was a DONE and HES GREAT ..... I want people to stop being ignorant .... at least the people I know, just because hes not on chemo or bald doesn't mean we drop our guard,.. what a hard weekend ... did NIck and I miss things we would want to do YES!!!!! But getting past this boulder once again is all we can see ... so HELP US ... PRAY that MOUNTIAN MOVES .... please ..... Faith is tough ---- the hardest lesson is blind faith and we repeated get the same test ..... help us ---- pray for us to let God sustain us .....I told my Pastor sometimes its a stranger and sometimes its our church but we need it to carry us all so please ... keep praying .... we need this so very much with the babies coming .... GOD BLESS AND READ BELOW ....

 

Hi all, thank you for following our Nicky ...... I would be a complete liar if my scananxiety wasn't at an all time HIGH! Nonetheless, Nicky remains symptom free for anything at all - so while I pray and try my best to trust God at all times I can look at him and it calms me. Well not always he has his normal I'm 3 and and I want everything NOW. Regardless of those meltdowns, he is talking so much more and its a great thing - just not always since he wants to tell us where we need to go which is I WANT TARGET etc... I am sure you can see my point.

I ask you to pray deeply that his MRI on Tuesday morning shows that whatever these odd radial changes have been that they are in fact completely gone! That he remains CANCER FREE and always will please. This scan so close to the twins coming is made this not doubt just a harder trip. I may have mentioned that typically our doctor finds us Tuesday or calls after with the results. Due to their concerns on the June 1 scan, we are going to ask that she not contact us until the entire team meets on Wednesday and he is completely reviewed by the Brain Tumor Board at St Jude which happens on Wednesday they meet Memphis time around 3pm-5:30-6pm their time so we should be getting a call after that meeting and yes when that number comes up of course its like a roller coaster whipping you mentally answering it. I am hoping that I can also over night the scan to Boston Tuesday so they can review him at 11:30am is when their board meets ... so Boston may get the scan in time or maybe not and we could hear from them before St Jude. We don't really know I am just praying to get them out before we fly back Tuesday night. So we wont even be in Memphis for the results. Its mentally so hard to have your doctor call and through guesses at you and once she does you never fully can erase the mental damage she's done the last few times.

So while Nickys had a good summer, there isn't a day that goes by that this pending date has messed with my head. Pray for us all to remain calm and let God fill us with peace because Nicky is in Gods Hands and always will be.

aug2013

To My Lord,  Jesus touch our child with your healing hands daily and never allow any harm to come to Nicky again. Show your mercy to him and us as we wait and believe that You have healed him. Lord please bring us CURES .... In Jesus' perfect name AMEN

Hi all sorry I haven't updated lately! This summer seems to have flew by and well I have watched Nicky like a hawk! We leave for St Jude on August 26 and he scans Tuesday August 27 at 10:30am Memphis time. The amount of scaniexty for this scan is simply nothing to compare to any other time. I feel very on the edge at all times. Then I watch Nicky and it calms me. He's in love with CARS from Disney Pixar and like his older brother has gotten into wanting to shop online when he see the new toys! Not a good habit at all - lol but that's our Nickybear.

bay15In my last post, I told you that Nickys primary doctor had called the week before we were planning to scan July 1,2013. She called after a second review and said that they did not find this to be that urgent and gave us the option to wait till August.... moving forward we gladly took that option. I am not sure if scanning 3 weeks apart from our U of M scan would have given us any real answers. So everyone agreed to wait especially since he has no symptoms of concern. As I watched the calendar approach the month of August a tiring stress has filled me, I am praying more and more as this scan approaches that all is going to be well!

So how is he, he's growing, his appetite is the only thing that seems to be a hit or miss and he is one picky eater - though pizza is always his staple diet lol. He has grown about 2 plus inches since our last trip to Jude but I am sure his weight hasn't changed and I think that just comes down to being so picky. His personality -still shy with others but will now at least say goodbye to some. Around us, hes silly loves to laugh and is a funny kid! He tries to repeat everything we say and we are praying once his hearing aids are turned down and new molds are made he will use them. He is expressing himself more and he shocks us all the time when he says something new. He has great balance and his memory is spot on! He loves to play and cuddle. He loves his big brother! He still has tantrums like any 3 year old would, the only difference is he can't always express himself and these can be stressful and tiring.

We took a trip after the storm knocked out of power and headed to Bay Harbor for the 4th of July. We love it there and try to get there once a year with the boys. We got Nicky swimming again and that was a huge deal for us! We have a pool but it is not completely ready, it was suppose to be done 2 months ago. Gotta love contractors! bay14

It's been a different summer due to the weather and waiting for this MRI as it approaches. Nick and I remind ourselves that this is in Gods Hands and this is all we can do is give it up to God and pray that they see even more improvement in his spine and ventricles and that the radial area of concern is no longer there and that he remains cancer free. We ask you to please pray for us a little harder this because mentally we need this scan to be great with our twins arriving soon. So much has happened so quickly, a new home and non-stop people working around the house and having a nursery ready times two! Nicky will also start early intervention program at the school that I will be attending with him, socially this will be a hard thing and a good thing.

We lost a lot of children over this summer, its been heartbreaking - Tanner S., Chris W., Aaron B., Hilary M, Asher L., Reese C. - I no doubt am missing a few - please pray for these families as you read this - please pray for an absolute cure for this disease.  Please pray for our Nickybear that those radial changes are GONE and that he remains cancer free!!!

My Lord, My Father,

I lift these families up to you and may you comfort them all. Please keep our Nicky Healthy!!!! Let us hear NED once again please Jesus, it is ONLY through your name we maybe petition our prayers at your feet - in your Almightly name AMEN!

bay16

So 2 weeks of calls and waiting and more calls and emails. Been processing it all and Judes urgency to get us there so quickly had me really emotional.

I have re-wrote this post 3 times and wasn't ready to hit send to you all. I'm glad I followed my heart and waited to update. So....

I also spoke with our radiologist from Jacksonville that wasn't overly concerned and really thought waiting to scan would help give us a better idea here. Its not that he's siding with either of our teams really, just a complicated case and its the first that has these oddities. He said it could just be damage - no one can say for sure what this change is yet. 

Then oddly around 6:30pm last night Nicky's primary from Jude called - what a different tone this call was. I think seeing all the other teams not feeling any urgency and gave them another week to all discuss his case.  She said, we all really are 99% sure this is not a tumor, but we have to know there's always a 1% chance they could be wrong. She said we don't need to compare scans so soon, it doesn't make sense to when he's doing great. Then our second primary, he was initially Nicky's first doctor called me from Jude and said waiting till August is reasonable. We are in agreement that this is a radial change. -----whhhheewwwwww! 

If I had posted the last two updates in between calls, what a different picture this all was - we were scheduled to be at Jude June 30 and scanning July 1.  It's amazing how much my doctors also trust me, 3 of them said what does your gut tell you - honestly my gut says he is fine. So now we just pray for this change to go away! If not improve! What a roller coaster the last 2 weeks of calls have been! 

What we know is Nicky's not relapsed - he does not have cancer - that the swelling in the spine and brain have improved. So NED with a radial change they are watching - we will Take that! 

So the Mommy side of this, I am hoping and praying my heart out everyday that the radial changes are going away, have improved and nothing is going to be needed. In my eyes my son is doing so well and is a picture of health. Its hard to understand when you have a child with no symptoms for anything why this change is even there.  Boston reviewed everything again on Thursday and again said they do not believe this is anything to worry about, but as his Momma - I am doing my best to give it to God and not worry! We just need good reports so we can come home and breath and enjoy our family.

mybear13

We are Home!

5215 Clarendon Crest St

Bloomfield Hills, MI 48302

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