Updates

Not our typical update - far more concerning and I just truly am scared.

There is any area in the pons/ the brain stem area and it has radial changes and is abnormal.  This was not there last scan from what my doctor said.

They have never seen it before 2 yrs out from proton and they are all concerned ( 3 doctors looked at it already). What this means is that while he shows no sign of relapse - it is not ruled out what they are looking at is not a secondary cancer induced from radiation. Our doctor even brought up that it is like DIPG, though she has the DIPG tumor Doctor look at it and he doesn't believe that is it that but agreed this was abnormal.  For those of you that do not know the term DIPG it is a type of tumor whether cancer of not that grows in the brain stem and is lethal and there is no treatment to cure it. Children diagmosed with that disease have a 0% survival rate. For her to even compare this abnormaltiy to such severity when my doctor knows I am so educated in brain tumors was really concerming - because I understood everything she said. She is 100% this is abnormality is radiation induced.

I am numb..... I am praying to God is it nothing at all .... but terrified, She will be consulting with Boston and speaking with Dr Yock and MD Anderson as well since they have not seen this before.  As if that wasn't hard enough to hear she said its reassurring that  he is behaving normal and looks great, then follwed that comment with if he has swallow breathing, you notice him snoring or becoming limp or one sided weakness this is signs that cause for immediate attention to us ...... ( those signs are the signs of any type of brain stem glioma and are all lethal diagnoses because they are non operable, thus treatment only holds it at bay for so long.  I am sorry if my last post was all over the place I had 5 minutes to write it and was surely not expecting this news at all.

We just got home to process this and jumped on a flight immediately. The second issue is that the inflammation has grown from two spots to one larger one that does require surgery so we will be back in Memphis for this in the next week or two  - THIS IS NOT CANCER AND NOT RELATED TO THE ISSUE ABOVE. Again I can't wrap my head around any of it so please just pray for us and pray to God that this spot is going to be nothing concerning. 

All I can ask of you is that this new concern be prayed over and over .... because I want my son to LIVE .... so I beg you to understand that this is scary and real and we are going to be on our hands and knees praying over this ..... we truly ask you to do the same for him. Thank you for all your texts and voicemails and facebook posts ..... My heart is torn tonight and my mind is racing ..... I will write more when I hear more from the doctors.

NO MATTER WHAT GODS HAND ARE ON THIS !

 

 

 

 

I hope you all had a wonderful Christmas and New Year.... so I realize I haven't updated since the last scan report, I apologize for waiting so long to update you all.

To start this Sunday we fly into Memphis to arrive at St Jude's to head to the medicine room, which acts like an ER after hours there so that Nicky's labs are done and he has been assessed for his MRI. His MRI is Monday morning so here is how we ask you to pray: that he remains cancer free, that the inflammation they saw as stable in his spine will be gone or greatly improved - that no infection will be present in his body - that his hearing and vocal cord are restored completely. Our Lord can do it all so we ask you to pray these requests for our Nicky.

(photo above in October a legofest) To update you Nicky has been a joy, growing ( 3 inches in 3 months lol and 3 more lbs too ) he is happy and loves to cuddle. He knows exactly what to do to get what he wants now - he solves everything with a hug, kiss and a big Muah sound lol. He is really funny when he is done with anything, or doesn't like the channel or doesn't want to be somewhere he waves and says, "BYE" repeatedly waving  and looks at us like get the point lol.

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( This is a Halloween moment)  He has mastered iPads, IPhones and APPs , he can take photos and videos too and its mind blowing he knows how to get to his favorite games and plays them and has a thing for YouTube, even when we delete the history he somehow knows how to find these CAR Disney Pixar toy reviews! Crazy! His memory is spot on!

He also loves to wrestle with Daddy and Christian. This Christmas he was so into opening presents, all you could hear him repeating was, "Whoa Whoa, what's that?!?!" Oh Oh ... What is that!!! ". It was really cute to see him so excited and honestly trying to rip open everyone's presents lol - he surely caught on this year!

On a different note, he has yet another nasty ear infection that led us to ENT yesterday. We aren't sure why he's having chronic ear infections but it has happened the last 4 scans that he just seems to get these bad ear infections that last 2 weeks. Because of chemo he's so resistant to so many antibiotics that he needs really strong ones to help rid him of these infections and his immune system still is not where we hoped it would be by now so it just takes longer for him to recover. We are relieved that all the symptoms of the inflammation in his spine he exhibits none still which would be balance issues and fatigue. He is a ball of energy bolting up and down the multiple levels of stairs with no help at all and he rarely takes a nap anymore. On a side note we are hoping to see audiology at St Jude if not then back here to have Nicky fitted for a hearing aid on his good ear, we believe his normal hearing range may now be an issue with knowing he lost his hearing in his left from radiation over the last two years. Just one one the many scarifices to have his beautiful face here is all that I need to remind me that these things are managable.

As for the holidays, we are grateful our son has enjoyed them and that we are all together. I am constantly reminded of the parents entering and dreading the holidays without their children. For some it is their first year without them, others its been 2 years but feels even longer. I can't help but cry because I can see their faces, each one as I write and my heart bleeds for each family. We have many children so sick and some on hospice --- long days for these families praying for one more day every day. It's difficult to not mourn with them for them and still balance being grateful for how far we have come. It's an emotional roller because of the love I have for these families and children.

I am trying to keep my posts as light hearted as I can because I have been told my posts, the reality is just too much for the people following our Nicky. I will not apologize for paying respect to the children we have lost and continue to lose. Like I said I am "trying" to keep these posts as light as I can too.
 
I will close with this, a Momma I love that lost her son this summer sent an email to me a few days ago. Her company is matching every dollar up to $25,000 donated to a 5k run with all proceeds going to St Jude brain tumor research. That gives them a chance at raising $50,000. I was choked up when I told Nick about this - it seems that finding a cure heavily relies on the parents effected by their child's diagnoses to carry the burden - it was said in another interview from TheTruth365.org from parents losing their son - it becomes the responsibility for us as parents to pound the pavement to raise awareness and funds to help our children.... That comment stuck with me reading Luca's Momma's email. I told Nick it hurts me to see parents that lose their child fighting so hard for us still to have a cure, yes they do it to honor their children that they greatly miss - but they do it so that they carry out a mission placed on them - truth is it should be everyone's responsibility to pound the pavement and it shouldn't take parents of a child who passed away to carry us all. How many times have you heard me says 46 children are diagnosed a day? 7 die everyday. While on Dec 14, 2012 our nation watched in live time in horror that 20 innocent children were gunned down among the adults in a senseless unthinkable crime. While I can not imagine a massacre in such magnitude - I still can't imagine 46 children are attacked by diseases that have no cure - that children are tortured through unthinkable treatments while parents pray that the drugs or radiation will be a curative.

 
So while Facebook is lit up with gun control comments, can't we try to focus on awareness for cures for the 46 children who will be diagnosed today and every day there after until we have truly found cures.

This is Luca's 2 minute video - I hope you will stop to watch it and if you have funds donate and if you can't - pray - pray that 2013 will bring amazing cures that God will gift researchers with the treatments these children need!

Deadline
Donations should be made before Friday, Jan. 18, 2013.

To Donate by Credit Card click:
 

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=BN4XXDFRG77UE3


To Donate by Check:
Please make checks payable to: “Spectranetics Corporation” and mail to:

Spectranetics
Attn: Sue Marquardt
9965 Federal Drive
Colorado Springs, CO 80921


Thank you so much for your continued thoughts, prayers, support and generosity! Kisses to Heaven, to Luca and to all the little angels who are with him.

I will try to update from St Jude when we arrive or on Monday after the scan results! Please again pray for our NickyBear and every child fighting a life threatening disease!

Dear Lord,

Thank you for all the blessings you have bestowed upon us in 2012 and we pray for 2013 to be a year of healing, renewing of our hearts and continued compassion to be the voice for these babies. We ask you to bless our followers for their prayers and sometimes praying on our behalf when I crumble over news of another child gone too soon. Lord give us the strength to continue to support other families and to grow in your faith daily. We seek miracles and we know you are a God of miracles ... Please keep our Nicky cancer free and without inflammation! We give all glory, honor and praise to you and we thank you for each person that is reading this blog ....In Jesus' name Amen ...

It all starts at check - in, but first I am in awe I am sitting at home today looking at the time and knowing I was suppose to be sitting in a waiting room after surgery or recovery with Nicky. GOD IS SOOOOO AMAZING.  .... don't you like knowing the ending to this update first though? (smile)  ... if you don't read below - MRI CLEAR ... Surgery CANCELLED!  I want to update you on the entire trip that we expected to stay for a week longer.

Nicky and I arrived on Thursday and checked in and scooted to the hospital to get accessed and a stop at the triage. It was the first time he was willing to get on the scale alone and do his height. I was so proud of him being such a big boy. We then have our first follow up visit at the endocrine clinic. The endocrinologist said the only reason we haven't met them yet is because everything with Nickys labs so far show that the treatment has not effected his growth. This is such a blessing.

3bday3They try so hard at Jude to make things welcoming this was our room while we waited for the doctor. We played while waiting but the wait was a little longer than Nicky liked so we walked - thats nothing new at Jude - never walked more in my life than that campus.

So his levels are all within normal ranges, his growth is all within normal ranges. The doctor said she would call with the newest labs but never did. I can only assume they were good!

So we finished the night off in normal Grizzle House fashion - Domino's pizza and the playground. this picture says it all - this kid is a happy boy!

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3bday5He wasn't thrilled with the idea of having his port in his chest all night to I talked him into more playground action to keep his shirt on. The following day was the MRI and well - I wasn't the happiest person because Nick's flight was delayed, then canceled and then switched planes. I didn't know if he would make it or not and I just wanted my husband with me.

This photo is the morning of the MRI in the waiting room next to what I call the NEMO fish tank because every NEMO fish is in there. It is a distraction but not when you are waiting 2 hours. He wasn't happy and Momma ... yeah me too. But we finally got back there and got him in the normal MRI Tiger jammies.... he was being good for a while until we realized 45 more minutes of sitting in the same room. Crayons get boring quick.

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So we got to hang out with Dr. B and I just love this man ... so kind and gentle and an Angel truly with sedating babies - he's just a gifted doctor! You can tell just by his gestures and how he holds them and interacts with them - he never forgets a child ..... one of Jude's greatest right here!

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As you know the results have me just in awe today ..... thankful .... grateful ... humble .... thanking God .....

Nicky slept the whole flight there and the whole flight back ... couldn't have been easier to travel with. Still just so happy to be home, and I was so happy to walk into Brightmoor my church on Sunday! Just wish Nick could have came.

We only left with one thing we wished was a little better and that's his counts still not healthy enough to endure chancing him being in a school or around other kids. His ANC is 1600 and this is almost 2 yrs after proton and a year and a half after treatment. We will take our small issue and shut up!

So his Birthday we WALKED .... he turned 3 and we walked with so many on our hearts including our son. 3bday- we have yet to throw a party but did have cake privately for him and got him a few gifts to celebrate God giving us another year to be so grateful for.

He's finally exicted to open things so next year we will have one great big birthday for this little boy.

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Oh how he loves CARS .... its awesome - such the little tom boy all the way. I want to tell you about the walk .... it was amazing and instead of posting a bunch of photos - here is the video. To my contributing donators I can never thank you enough .... my walkers - you inspire me because you walk without knowing this total impact but took the time off to be with us when that means the most to us and to our prayer warriors .... we need you to keep the faith - you inspire us too when we are weak. God is great ... God is Good ... God has a plan .... sometimes we just can't see it.... But this you can.... I loved that our Pastor put us over the $2000 mark and we had to rise the amount and raised it again and again .... Nicky was the 2nd place higest donations raisiing  $4,165.00and our team .... $5,665.00 total .... GOD BLESS EVERYONE THAT HELPED US ... HUMBLED is an UNDERSTATEMENT! If you can't see the video below click here ! VIDEO HERE

Hi all, gonna make this short and sweet - MRI is cancer free N.E.D. (no evidence of disease) Our second situation was - were we going to have to stay to have surgery for the inflammation in Nicky's spine ..... happy to report that the edema is stable and the neurosurgeon said in some areas look like it has in fact improved!!!! We are coming home tomorrow - sighhhhhh can't tell you how much we needed this news. It came with a trade off that we re-scan in 3 months verses 4 but we will gladly do that to avoid surgery.

I also want to THANK YOU HEALER ... our LORD JESUS CHRIST FOR THIS NEWS ..... our almightly healer has his hands on Nicky and your prayers along with ours were answered. I want to thank another ependy mom Yuko that told me how much Boswellia helped her sons edema and to try it. We only had 2 1/2 weeks of this herbal supplement under NIckys belt but we know that it must have healing agents in it. The other name for Bowellia is Frankincense - if you google it you will find that upon the birth of baby Jesus this was given to him along with Murph by the 3 wisemen.  They say that the Frankenisense was for healing and the murph would be used to embalm our Lord as God knew His sons fate. We believe God gives us nautral herbs to heal and we believe that the next scan keeping him on this will show even more imporvement if not gone all together ....

Can't wait to come home ..... THANK YOU FOR YOUR PRAYERS ...... THANK YOU JESUS !!!!

From another Jude Momma (Ana Castro) Matthew 2:11 "Entering the house, they saw the child with Mary His mother, and falling to their knees, they worshiped Him. Then they opened their treasures and presented Him with gifts: gold, frankincense, and myrrh."





  I gave this speech just a few days ago, I hope you will not only watch it but share it.  Our son turns 3 by the Grace of God and Love and Prayers for you all tomorrow. Many of you have given fianancially so much to help aid cures. This is the last time we will be doing this walk for Nickys Birthday and please pray for our trip to St Jude next week and for our son to remain cancer free and without inflammation. So many of you have given fianancially to help aid cures, may God Bless you for doing so and if you planned on doing it here it is one last time.

God Bless you .... I will be updating after the walk and posssibly from Memphis to let you know how things are going down there. Storm heaven for Cures and for our little man.

I Posted it this year - but felt this should be posted again!

The Starfish Story
Original Story by: Loren Eisley

One day a man was walking along the beach when he noticed
a boy picking something up and gently throwing it into the ocean.

Approaching the boy, he asked, What are you doing?

The youth replied, Throwing starfish back into the ocean.
The surf is up and the tide is going out.  If I don't throw them back, they'll die.

Son, the man said, don't you realize there are miles and miles of beach and hundreds of starfish?
You can't make a difference!

After listening politely, the boy bent down, picked up another starfish,
and threw it back into the surf.  Then, smiling at the man, he said
I made a difference for that one.

If you can not see the video above please click the blue link below.

NickyBears 2nd Birthday - CURE SEARCH WALK 2011 

THIS YEARS WALK IS ONLY 10 DAYS AWAY PLEASE CLICK BELOW TO DONATE OR REGISTER TO THE 2012 WALK

Summer recap since this is September and pediatric cancer awareness month I want to share with you what it truly is like to walk in my shoes today. I have battled with the rawness for this post - but find it so honest that I must post it.

I watched this video and sobbed last night .... I followed Ronan the child this song was wrote for and last year I asked many of you to sign a petition for allocated funds for pediatric cancer research to our government because of someone that was Ronan's moms friend. If you can not view below this is the video link. http://www.youtube.com/watch?v=1ITrd7fM6aY

I cried watching this, after all my son has been on a baby ( under 3 ) protocol and I can't count how many children we have loved and lost now - not just the babies but so many children in these few short years. So with that being said, this summer as "normal" as normal is now .... I would get anxiety when I saw a graduation party card - would my NickyBear God willing graduate? I stood at Christian's 5th grade graduation and when they said class of 2019 ... I teared up thinking of all the mom's that lost children right before this milestone and again wondering will I see my NickyBear walk across this stage and be a graduating 5th grader? I take nothing for granted and absorb every moment with him, at times hoarding him and just loving him. Can you blame me?  I love when he just hugs me, its like I need it more than he does but he doesn't let go ..... ahhhh I love this little boy. I listen to the words of that song "Ronan" and pray to God that I have more than the best four years, or the cars on the floor or I remember your blue eyes looking into mine like we had our own secret club, I remember you dancing before bed time then jumping on me waking
me up,  ---- I want a lifetime for him so much it hurts me.

aug1I feel like I shelter my readers and sound so profoundly strong, when in fact I have had no choice but to pick up the sword and slay the dragon ( cancer )  with all my might!!!! I am strong because God carries me, and my husband is there for me - but it is a struggle that is unimaginable to anyone that has not walked our my shoes. We walk for his 3rd birthday a week before he is due for surgery, a surgery we are still praying he won't need but it is in fact scheduled and I can't help but think of all the children that we lost that will never earthly turn 3.  It is overwhelming.  I fell in love with too many families, too many children not realizing my heart would be attached to the yo-yo string that is cancer.  I have learned through my son's journey, that I love more than I ever thought possible and I hurt more than I ever imagined one could.  I long for parents that lost a child to be reunited with them and I pray for cures and God grace to surround them.

I can't begin to imagine my son in a hospital bed again or recovering sleeping to the sounds of monitors and nurses checking vitals but I am ready for whatever God has in store for us - I hate it so much for him .... and I hate what he has been through!

I realize asking for donations for CURES when many of you have already given is a huge request to knock on your door yet again, but I truly ask that you consider it, even if you can only give $1 to research .... this is your official invite to Nickybears 3rd birthday party .... we WALK, we ask you to not just donate but be there and experience this unbelievable movement for children and the demand for CURES. If you can not walk, be a virtual walker - its only $10.00 - if you want to walk but can't afford it - let me know I will find a way! I know times are tough for so many people, but like I said I am not going to keep asking the same people to step up - next year we will have a normal birthday party because this little man deserves one, but for now we must do all we can for a CURE - we have seen too many children not get another birthday and that drives me to do this one more time this year. HELP US PLEASE .... we have never asked for anything to benefit us, but to benefit a CURE for ALL pediatric cancers.

With that being said, consider this - for any life event that you might have wrote a check to my son - instead of doing it later .... do it now. I know that sounds like I don't trust God, when in fact I trust him completely - as my husband said, "I don't question God, I just have questions" .... so instead of a birthday gift, graduation invite, a college gift or a wedding contribution - do it now while we can to something to find a cure so he can reach all these normal life experiences and I rather tell him later that people aren't sending gifts later because they helped us find cures when we needed it.

I have decided it is the last year that we will make this his birthday event because with God's Hands on him as he turns 4 next year, it's about time for cake and letting him have his first real party. He spent his 1st birthday coming off chemo inpatient at Jude with nurses and a St Jude cake - his 2nd at the walk and his 3rd ... WALKING once again .... I won't keep asking but I am asking now to please consider donating or being there with us please. You need to register ASAP please come WALK with us ....

REGISTER OR DONATE HERE::: http://www.curesearchwalk.org/southeastmi/nickybear22

Dear Lord,

PLEASE give us more miracles, more cures .... please comfort all my friends that have lost children. What a difficult summer watching so many earn wings Please watch over our Nicky and heal his body completely - please never allow cancer to ever touch him again and remove this inflammation!!! Please bless all our friends and family that donate from their hearts and for each prayer they have prayed for our family. We are so very blessed to have people praying so hard for us .... Thank you for ALL that you do Father .... please heal and touch someone we love that needs prayers to that one day you will restore this broken person and bring her back to us whole ....

Reminder .... Please consider any donation at all for the CURE SEARCH WALK Sept 22, 2012 its NickyBears 3rd birthday and we walk for cures and to honor all the children battling and the ones we have lost .... we have lost count so PLEASE help us find cures .... GOD BLESS ... if you cant walk consider virtual walking its only 10.00 and kids walk free if you walk ....

PLEASE DONATE HERE http://www.curesearchwalk.org/southeastmi/nickybear22

Working out the scheduling kinks of this pending surgery. I was beyond upset last week with my primary telling me that they wanted to schedule the surgery Sept 26th meaning admission Sept 25th. I told her I wanted to be home for Nicky's Birthday and the CURE SEARCH Walk and wow to line this up right after was an overload of stress. More importantly, she told us the scan didn't need to be done before this surgery. I went into my Raging Mommy Mode - that means DO NOT MESS WITH ME!!! I called neurosurgery and told them we are not scheduling surgery until his disease has been evaluated first!

Isn't that that logical choice to make sure that this issue is in fact needing surgical invention still and that this is the only issue that we are dealing with before performing a brain surgery???? I was red hot and emailed my doctors and told them there is no way we are having surgery without an MRI first. Apparently the neurosurgeon nurse and my doctor spoke and she told my doctor about the lengthy message I left her because my primary called today and Nickys MRI was moved to Sept 28th 8:45am because of course I wouldn't allow him to have a later slot either. I have become pretty demanding, but that's what a great mom has to do right? He will be admitted to Le Bonheur Sept 30 and the surgery is scheduled Oct 1, after all was scheduled, I had my own mini meltdown and cried and prayed in the shower for 20 minutes asking God for healing and strength to endure whatever we must.

Keep me strong Lord .... so how should you pray? - pray that God removes that inflammation and that they wont need to do any surgery ..... I am praying that over him daily, placing my hands down his spine and head and I need you all to also - I wont accept it unless I have to! My Heavenly Father please show mercy and grace to my little man PLEASE! Pray that MRI is clear and disease free! Pray harder because we need it please. Pray God restores his body without anything needed surgically. We know our Lord is capable, so please keep praying that this will resolve itself.

The following day, the above post we written last on Monday while I awaited the neurosurgeon calling me to answer 2 1/2 months of questions that had no answers from my doctors. I want to share a short video of our neurosurgeon so you can see why we will only allow his hands to be entrusted with Nicky's ( possible hopefully not surgery)

So let me list my questions so it is answered for you also:

1. ( THIS WAS MY LAST QUESTION, BUT I BELIEVE IT SHOULD BE POSTED FIRST!!!)  Can this still change and not show up on the next scan ... he said "YES, I would have requested a scan been done prior to any surgical invention... "  This answer is most important when we pray - yes it can change, yes its possible and so PRAY it will just be gone - In Jesus' Name ....
2. Could this surgery leave him with deficits?, the answer was" It is not near the cranial  nerves so no its fairly easy but can be complicated due to how he healed and how he was closed up and what was used and scar tissue."
3. Does this procedure always work? His answer, Most hospitals have a 50-60% rate at working to correct the issue - he personally has the record of 70% and a little more - however if he feels that he can not just fix the issue he places a small line from the 4th ventricle to the spine. I in return asked if this changes with growth and he replied that it does not that it remains in tact and working, he explained that long ago that use to place a spine shunt but that they do not work so this is the only fix that long term doesn't need a second surgery.
4. What is the recovery? The recovery is 3-4 days and normally never after this do you go to the ICU they just want to assure the patient is stable enough to go home.
5. Surgery time .... that's up in the air they don't know because they don't know what type of scar tissue and radiation tissue scarring is there that may pose any challenge - but not long.
6. The incision, about 1-3 1/2 inches straight in the back of the head - ( NO HAIR CUTS FOR NICKY TO COVER THAT UP .... : )
7. Pain management, first night might be tough but after that nothing Motrin cant handle.... sighhhhhhh

So after all that .... I remain so hopeful that my son can still be relieved by faith and PRAYER! Dr. Boop our neurosurgeon also said this is an elective surgery that may not be needed yet but eventually will if the scans show change, reason so is that this inflammation in the spine over years can hallow out the spine and cause major deficits so early intervention is suggested among the best pediatric neurosurgeons. Gotta love Boop!

My side notes - the surgeon was shocked my doctors did not think that evaluating for disease first was the way to go ..... I just can't imagine what my Dr. was thinking when this is our first 4 month scan for his brain.  Nonetheless - bringing out the claws worked, THIS TIME!

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After finding out U of M never sent our scan last week, Friday they told me it was overnighted and would arrive Monday - it did not. They did ship it but did not rush it - I was so stressed that I pulled the entire scan folder from my disk I had and zipped it and sent a link to my doctor praying she would look at it and not wait for the actual CD to arrive. She did tonight....

mottI just got the call a few hours ago with our official news about the inflammation in Nicky's spine. Because of the way Nicky has healed from the surgery he has what is called syrinx (which is the inflammation that is present) it is likely related to the acquired chiari and tight craniocervical junction. What this means to explain it better is that from where his tumor was located, his brain dropped slightly during healing over the past two years. It is now slowly causing this inflammation to be present in the spine. The scan showed that the inflammation has moved up two vertebrae's so it is slowly becoming an issue that will require a surgery for posterior fossa decompression at some point. Dr. Boop our neurosurgeon reviewed the scans today also and we will be planning surgery during our next Memphis MRI in October. While we do not invite this news today, we are grateful it is corrective and that this is not cancer, that this is not something worse.

We are extremely sad to have to put him through another surgery, hospital stays and pain managing that we have managed to avoid since leaving St Judes - we will be right by our little mans side. Pray for us in preparation for this to go smoothly and that his recovery is quick. My stay in Memphis will be longer than I am use to but I am ready to do whatever is needed for my boy.  This is not and in and out procedure, this is surgery and so we ask that you pray for our little NickyBear and that his scan also remains cancer free.

We are not certain of the dates yet of the trip as they may change due to this surgery, we will keep you posted. We knew eventually we would have to cross uninvited bridges from treatment, it seems all the children that are blessed enough to get through treatment have to endure different obstacles at different times.... We Thank God DAILY for the gifts of life the blessing that our Nicky is here, it all comes at a cost that we wish we could pay for him instead of him ever having to endure any of it.

GOD PLEASE WATCH OVER OUR BABY BOY!

Long week since Tuesday's scan. I know many of you are praying and waiting to hear and update and yesterday after hearing nothing from our St Jude team, I called U of M and after 3 different departments kept switching me to different areas of the hospital the records department had no order to send the scan to St Jude. You can imagine that I was upset since we had been waiting all week and while in recovery the nurse confirmed that Jude was to get the reports and images.

So they are overnighting it on a friday which means they won't have it until Monday. Meanwhile the report was faxed to them and well I had it also faxed to us also. I feel confident to say there are no cancer concerns - which I was really disappointed that my doctor didn't call to at least tell us that. However the scan was to compare the inflammation from the previous scan to this scan and you can't compare an apple to an apple without seeing it so they haven't called and won't until they review both together. I wish I had more news but reports are interpretations of the images by a someone that has never seen Nicky's scans before so they may note things that Jude is aware of and may not see things the same way to compare and while I am breathing a bit better after reading the report, having knowledge of what I am actually reading helps but we need official news from our doctor - when we have it - you know I will update as soon as I can.  I am sorry some of you have been worried, imagine us still waiting officially.... so please keep praying and I will update soon.

Hello everyone! Summer is just cruising by .... Nicky has his scan at U of M tomorrow morning of his spine, I ask that you please pray that the inflammation that was once present in the last MRI is completely gone now, and of course that there is NEVER any cancer period. He has had chronic ear infections since May - its seems as soon as we dodge one another one happens in the other ear which makes enjoying the water challenging for him because he just loves to be in the water. We will be meeting with ENT next week about his ears not closing since the tubes were removed and see what they think.

Other than that, its been a beautiful summer in Michigan this year. Nicky love boat rides and playing outside and he gets a kick out of teasing Haley our dog. He loves the pool and loves wrestling with Daddy and Christian. I have loved all the cuddling I get or random hugs are just the best! He must take after me because he LOVES to dance to music. He loves his movies and boy can he eat! He is getting bigger and stronger and more beautiful everyday. Please pray God continues to have His hands on our boy and that CURES are going to happen.

Please continue to Pray for the Paonessa Family, for strength in Luca's absence and for comfort and peace that only our Lord Can provide. I wanted to share this video of Luca with you all. His Daddy said something that I will never forget at his prayer service I attended.  His Daddy whom is a doctor said that at St Jude there is a wall with survival rates that are incredible - but my sons cancer wasn't on that wall, medulloblastoma - things need to change, while I listened I realized ependymoma isn't on that wall either. I am asking you to please help us change that by donating to the CURE SEARCH WALK at this link we will be walking soon, Sept 22 - Nickys 3rd Birthday - I hope you will join us in this fight! <3 I will update with the scan results when I get them, it may be a while since they will be sent to St. Jude to be reviewed. God Bless you all!!!

PLEASE DONATE HERE http://www.curesearchwalk.org/southeastmi/nickybear22

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I'm so sad today, learning of this sweet boy Luca departing this world leaving his Momma and Daddies arms straight into the arms of Jesus last night at 6:45pm ....

I know I ask you to pray a lot but please pray for his family in the days to come that God fills their hearts with the strength they will need to move on. That God fills their every need during this painful time. I told Nicole today, the pain is no different every childs story is so different and you find different qualities you fall in love with - each lost I grieve. I love this photo of Luca and his Momma Eva ... so when you see me advocating and endlessly trying to raise awareness - these are the some of the faces I carry in my heart. I hope through my journey you will carry them too because every child matters, every life matters.

His Momma wrote this in her post :::

We are so thankful for Luca, the greatest gift a parent could ever wish for. We hope that he has inspired you to love deeper and have stronger faith. This life will pass in a blink of an eye and we will be together with Luca again.

Rest in peace
Luca Rafaele Paonessa 6/25/2008-7/21/2012

Its been summer .... we are enjoying the boys and Nick can not sit still, so Christian is always on the go with his Dad. Nonetheless, Nicky has been battling an ear infection for over 3 1/2 weeks in his left ear since the tube was removed. Endless weeks of meds is just no fun for him. He also caught a virus type cough among the 3 bacterias that he came up positive for from the ear culture. Its not easy trying to let him swim and yet he can have no water get in his ears. Thankfully his spirit hasn't been effected much by these both illnesses that could have taken away his energy.

We have still managed to stay out patient with no fevers or hospital stays! Thank you Lord. As mentioned over a month ago that Nicky would need an MRI to follow up with the inflammation in his spine on the last scan. After the run around from U of M it is scheduled for July 31st at 8am - we ask that you please pray this is gone, the idea of another procedure or surgery is just not something we want to think about. So please pray it is clear and we can rest until his next St Jude scan. I am a little nervous allowing anyone else to sedate him because St Jude spoils us and I hold him until he is asleep.

bay6We got up north for the 4th of july and we decided that we were going to release balloons for some of the children that we have lost to this fight .... This Yellow one was released for all the fighters - Nick is holding this and had the job of releasing them,

We are reminded every single day to thank God for just today. The news of Luca has my heart in pieces and I wrote about it in the post below, I just never emailed it out. Also, Tanner another child whom we have followed after 8 years cancer free has a radiation induced brain tumor that is lethal. Please pray for his family and for him. There are simply too many children to name off that are battling this disease again and again..... please pray for cures.

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This is us on the 4th, we wore our American colors proudly. Nicky was not his normal restaurant friendly self so after 5 attempts we just ate in.  Glad to be home but then the power was in and out and then ... Poof! Gone .....I posted this on Facebook and I will post it here:::

We forget how very spoiled we are - when we have melt downs because our powers out and forget their are countries that don't have electricity at all. Or air conditioning - wow thats a big one in the last 24 hours when it was 101 yesterday and no air while we slept so uncomfortable while so many have never had none.... Its much like how a cancer parent sees our worlds ---- for those of you unaffected please be grateful you are so blessed because someone would give anything to have that blessing, likewise be mindful for those without the things so many take for granted ... blessing you rarely pay attention to because we have evolved into a spoiled society that takes too much for granted ... electric is back on ... air is fighting to climb back to 69 degrees ..... praying for CURES ... ♥

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bay4My point with posting it again here is - don't sweat the small stuff .... and remember almost everything is small stuff..... smile - thank God when you wake up that we live in a country that gives us freedom and we are capable of everything we dream if we just try and work hard for it .... not everything is in our control though and so we leave the rest in Gods Hands.....so just for today Lord .... thank you for the "GIFTS" we hold .....

Dear Heavenly Father, Thank you for moments and love and laughter .... I do not take for granted tomorrow and all that it may bring - I just am so grateful for right now being able to hold my boy .... please watch over Luca and his family hold them tightly and Tanners family as well ..... it is a brutal reminder that we must keep fighting for CURES ..... please donate or walk with us on Nicky's 3rd Birthday September 22, 2012 The link is below please consider donating or walking ..... this is the only time we are asking our friends and family to honor not only our son's journey but so many still fighting and the ones we have lost ..... God Bless you all .... NickyBears Momma ....

http://www.curesearchwalk.org/southeastmi/nickybear22

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What a horrible feeling today has left in my heart ..... I woke up and fed the boys and while going about my normal routine of tossing toys and Nicky into a bathtub of bubbles, I glanced down at my phone while it downloaded my emails .... an urgent update came in on a beautiful little boy from my protocol Luca P. it was titled "Breathless" ..... I read it in a panic mode, my heart truly was racing to understand that title ..... and then it came .... that he was admitted for pain during a routine visit to St Judes and that the tests revealed that the cancer has spread to his bones and lymph nodes.  That there was no cure and that they were returning home to love there little boy and that his time here is short. I won't lie, I buckled at the knees on my bathroom floor, my purse half emptied from cleaning it and I cried uncontrollably. I was such a wreck that somehow my hand slipped across the counter slamming this tiny precious vial of oil that a dear friend sent to me at St Jude. The vial carried oil in it, blessed anointed oil, oil from heaven of which I have been able to anoint many babies and children with at St Jude and when I fasted in prayer and on Nicky before each scan, even blessing gifts sent to other families..... it laid shattered on my bathroom floor. To me .... I was understanding her title "Breathless" .... I also felt shattered like the glass laying across the floor. I panicked and text my friend asking where she got it, that I needed another vial ASAP .... The place she bought it at I called the church they had no record of it ... I searched online until I found it .... the same vial, the same oil, virgin olive oil from Israel ... except it wasn't the same - it wasn't blessed?!?


I sat there praying for Luca, praying for his family ---- praying about everything and crying .... lots of crying on that bathroom floor, I grabbed my boy and towel dried him and dressed him . Then I went back, I looked at the shattered glass and oil and thought how in the world do I preserve this still ....  ? Our human hearts race to find a way to fix what is broken, but like this vial - I could not fix it. But the answer lies in everything we do .... I picked up that glass and threw it away, it was shattered I could do anything to fix it  .... I took my hand and carefully sliding it across the floor several times to scoop up oil to get just enough oil contained that the new 10 vials will be able to have a drop of the old "blessed oil" mixed it in when they arrive. No I am certainly not superstitious! But the value of all the children that oil touched made it so special that salvaging even a few drops to carry on in the next 10 vials gave me some peace .... its funny normally I would have just wiped the floor clean without starring at that destruction and coming up with a plan of how to handle this ... but see this is what a cancer parent has to do .... we have to look at the situation and evaluate - how can I preserve this, what can I fix? For me, I could not fix the glass vial, but I could carefully keep just enough of the oil to keep all these children with me .... it wasn't wiping my floor clean,  but keeping it going to the children that I will still need it .... and yes it will still have the original oil in it ... but not all of it is .... it carries the past and present and future patients that I need to pray for and anoint.


Today my faith is tested far more than it has been .... you see, there is always that one parent that tells you they know their child is healed - every fiber of them believes that - and for me out of all those Momma's I have ever met Eva... Luca's Momma was and is that Momma. She told me my updates upset her, scared her because I talked about the children I have come to love that need prayer. Eva, you have been a terrific mother ... you probably won't read this post because you know that it's about Luca ... but if you do .... I believe so much - because you have. We had conversations and got to pray together once on the 2nd floor at St Judes in Feb before Nickys scan 2011 .... I told her today - I want to pray against all odds because believing is all I know how to do for Luca, and it is still. So I don't know how to pray exactly -  I know that its really bad and hes in pain so please pray that God shows mercy and allows no suffering ...don't just read this - please pray for Luca and his family ... God Bless ... ANG

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This photo was taken at the Grizzlies House playground when we first arrived to Jude ...
May30Jude4Back to Grizzlies ....In the last few days I have been trying to compile my thoughts and feelings about this week.... Nicky was great and slept through our flights. Upon arriving by shuttle to St. Judes there was another family on our shuttle bus just arriving. A teenager that was so thin and frail covered in a blanket. The shuttle stopped at the hospital and the man driving asked if he needed a wheelchair and the boy nodded his head. Upon crawling out of the first row I noticed a puke bag in the bald teens hands that he was clenching it as he was trying to get into the wheel chair and his mother trying to shuffle all their things and small bags. I turned my head away and let the tears roll quietly down my face, a truthful reminder that we were in fact at St. Judes.


The balance of stress is like walking a right rope - across each parents face tells a story.  This trip marking 2 years since we heard the words that our son had cancer, and marking 1 year post treatment ...it was different. It brought a different anxiety that was more intense, it made the reality of all we have gone through feel like a bad dream or movie - revisiting the scenes play out in different areas of the hospital.  This time I didn't enter it in a fog but saw the pain everywhere.

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This is a photo of Nicky before the MRI, this was the first time they didn't have our normal Tiger gown and pants and gave us the girlie peace stars and hearts...
As I told you Nickys MRI was clear - no cancer. But our week didn't end with a sigh and exhale and let's go home.  Our doctor called 10 minutes after my post and told me that the neurosurgeon looked at the scan and agreed that we shouldn't wait until our next scan and asked us to re-scan his spine in 6-8 weeks to see if the inflammation is gone, improving or gotten worse. If its gotten worse she threw more technical medical terms around and a possible surgery as if it was casual conversation. Upon reading the final report of his scan, I completely understand why they are being overly cautious, but its at our expense and even the radiologist noted that in a clinic setting these observations may be pretty much nothing. For some reason the children on this protocol pick up contrast in the kidneys, we did an ultrasound for that last time that was uneventful, again overly precautions for our team to schedule it, but we did it. Sometimes I can't tell if the tests are needed or just added stress ....either way no fun.

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( I saw this car the night before the MRI and had to take a photo of it since my friends son and Nicky were scanning 24 hours apart and his Mommas name is Virginia but goes by Ginny)

The mother I am researched for 10 hours and sent our primary Doc so many questions she has yet to fully reply but told me she would when she had more time. I'm not a simple parent, nothing is simple with my questions. Nicky then had his hearing testing ABR. while sedated I went to pick up his MRI CDs and I met a mother in radiology, her daughter was first diagnosed with ependymoma at 9 months old and was back being treated for her third relapse, its just devastating meeting these children that don't just fight cancer, win and go home ... but repeatedly this is their lives.

May30Jude

May30Jude2So the LP was canceled due to the inflammation in the spine and the ABR was done as well as an endocrine lab for cortisol. Nickys cortisol level was exactly the same as before radiation so that was great news. The hearing was a bit different but nothing we weren't prepared for. His right is great, his left has more hearing loss but they are uncertain how much because of multiple factors - the piece they place in his ear could not get a good read because of his tube being packed with wax and the right one fell out so we are needing to see our ENT specialist this week and we think we will probably ask him to remove it since at age  the ears typically don't need tubes.  In September they will do another hearing test but not an ABR since they do not believe is is totally accurate, however it was a good gauge when he was younger. This news was no shock to us, it was all expected from the side effects of the treatment he needed to cure him.


Upon arriving in Detroit the man sitting in front of me turned around and said he was a good boy on the flight. I saw him again at the gate and handed him a Nickybear card and said this is the little guy that was behind you. I saw him sit with his wife while Nick put Nickys stroller up and he walked over to me and told me he just left Louisiana from burying his son, that he had a heart attack and was on life support but not enough oxygen to his brain and he died. I told him how sorry I was to hear that. You just never know the pain of the people around you and I am reminded that it is everywhere, everyone has a sad story... we all experience pain and suffering ... yesterday that same gentleman wrote me from Nickys website, read our story and couldn't imagine what hes gone through in such a short life and wanted me to know that he and his wife have always donated to St Judes and that he will most definitely continue to. We meet people not by chance, but by fate .... the smallest encounters, sometimes are bigger than we could ever imagine, I ask that you pray for the Johnson family as they mourn the loss of their son.
The next day I was so exhausted but I rushed and made my way to Ryan Kennedy's Funeral Service. It was overwhelming, I would guess 700-800 people were there. The Tributes were amazing and it left me heartbroken to watch another child only 10, just gone too soon from the same disease that my son fights .... Please pray for his family. In the midst of this week ... another child from my group that was 8 years cancer free after multiple relapses he was diagnosed with a secondary cancer that is inoperable and aggressive, Glioblastoma .. please pray for Tanner and his parents.

Nicky had his tubes removed from his ears today just another step in letting them heal now .... Our schedule already came and though its not solid yet and things are missing his scan is scheduled for October 3, 2012. So weird to see something feel so far away for once ... I would like to sigh .... but we will be scanning at U of M in 6-8 weeks to confirm that inflammation is gone.


Lastly ....PLEASE really pray for these kids fighting life threatening diseases across the globe.

P.S. Thank you Lord for the great scan results for Ryan D. David P. Megan P. and Seth B. and of course Our Nicky G.....

So first things first! MRI is NED ..... (No Evidence of Disease!!!!) We were able to meet with our primary Dr. Wright and see the scans from the last scan and from this one and everything looks good! There was a concern of fluid what they call myelitis which is inflammation and more than likely because of a very bad ear infection that he was fighting for 2 weeks prior to coming down. We had just stopped the antibiotics about a week ago after 2 weeks of being on them. His counts also were low at 1600 ANC we were really hoping these numbers would be higher, but possibly the ear infection has still kept them low.

Our Doctor is going into her weekly Brain Tumor Board meeting and will discuss Nickys scan and infection with him. They may want to rescan him in 8 weeks which we could do locally and not have to fly to Jude but we are really hoping that our Neurosurgeon will not find it neccessary and give us our first 4 month break from scans. We are suppose to move to 4 month scans this time. She is suppose to call later and let us know how they feel about this. So tomorrow he will have endocrine labs and his ABR ( hearing test ) and an LP ( lumbar puntcure ) - we will have another visit after that and we will update when we know more ....

Thank you for your continued prayer and please while thanking God for keeping NickyBear cancer free, please pray this inflammation goes away and pray for Baby David P. and Ryan D. both scanning tomorrow.

THANK YOU LORD WE ARE 2 YRS CANCER FREE!!!!

Last night I looked down at my phone around 12:40am and noticed the pending date of May 22, 2012 had arrived. I tried not to replay too much of the hours that led up to sitting in the OR at 4am. I foolishly decided to pull up the photo from after surgery thinking it wouldn't be so bad and I could handle it. Wow was I wrong! My heart immediately went into that place, that moment, the desperation of helplessness of watching my baby suffer and the months that followed watching this viberant baby lose his ability to swallow and placed on a feeding tube was so painful. Watching him lose his hair and having to shave my 8 month olds head to seeing his eye brows and eyelashes all fall out through chemo... I could go on and on .... but the photo brings me to tears and in the same exact time it brings me such a gratitude for Our Lord and our Savior Jesus Christ .... I am humbled by the out pouring of love and friendships that have carried us through the last 2 years. Yes today Marks 2 years since we were told he had a tumor and May 24, 2010 it was removed by God's guiding hands through our surgeon. For these moments I am so grateful for the "GIFT" of my boy, my family ... my husband. Sometimes we have to look back no matter how painful it is in order to see how far you've come and what a complete blessing it is that we have our son.

So while today marks our 2 yr mark, it oddly falls on the National Brain Tumor Awareness Day, so please wear Gray today - or tomorrow or any day this month since the entire month is GRAY for MAY, if you are on facebook please change your profile photo for the rest of the month to any of the facebook images at http://www.project467.org .  We will be arriving at St Jude next Tuesday with a line up of tests. As you know the most important test is Wednesday, May 30th and we hope to be able to share the results as soon as we get them. We have learned the hard way Wednesday's are long waits for results since our doctor is in meetings that day every week. We stopped trying to move the schedule because the just seem to do it following our last scan so we have no choice in it. So I urge you to pray that Nicky remains cancer free and that he is NED (no evidence of disease) I also ask you to pray for Ryan D. who scans the day after us at Jude and David P. also scanning that day in PA.

So I wanted to share with you what a year after treatment and 2 yrs after diagnoses looks like. Our silly little man is a fiesty 2 1/2 year old that wants everything his way. Can you blame him?

may2012

While we celebrate life I will share a moment with you from last night ... a casual dinner at California Pizza Kitchen .... ( it felt normal ) like we were a normal family - no one can tell what we have lived through and well its better that way.  We left and Nicky went running into the mall, laughing and silly and he eyed a Yo-Gabba Gabba toy on the wall in a store .... he got Christian to hand them to him and he tried bolting out of the store .... lol I looked at the woman behind the counter and said he's a 2 1/2 year old thief!!! We managed to only have to buy one to keep moving. Yet he was in the best mood running and playing and I know Nick and I were smiling just as big to watch him be normal with his big brother. He then bolted to the escalators and we took two rides while people sitting in the court watched .... how often to to see parents willing to just ride the escalators because their 2 1/2 year old is laughing and having a blast? Pretty rare to the people observing us, totally unaware how much we appreciate these moments we are given ... taking nothing for granted. I know for the people watching, our faces said it all ..... they even laughed that we allowed him to take the lead and all along we were laughing with him and his silliness. We are so grateful for moments like these .... small treasures indeed.

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So I will leave you with this thought ..... we have come a long way - but this journey doesn't end and we need our friends and family to keep praying and lifting up little Nicky Bear as often as you can that God continues to keep him cancer free. Anxiety is a battle, so pray that we have peace with sitting through all these tests. We just want to come home and enjoy all the normal moments God allows us to have. In the same breath I ask you to pray for a little boy, he is 9 and he has been struggling to hold on .... his name is Ryan Kennedy and we know that in Gods time, God will welcome him with open arms to complete healing. He lives in Clarkston, MI and we met at the CURE SEARCH WALK last year. Ryan has been battling the same diagnoses as our Nicky for 5 years and this little boy has endured 7 relapses in that time frame ... pray for his family and pray for him in whatever way God lead your heart to pray for him .... he has suffered so much .... and his Momma prays for comfort for him in his final days.  His family can be found here http://www.carepages.com/carepages/RyanKennedy52402/ Watching Ryan's Momma handle her son's situation with just love and grace is truly humbling and it carries the heavy weight of the devastation of this disease and how vicious it can be.

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Lastly Dear Lord,

Thank you for the gift of understanding how precious every moment is, even the absolute ordinary ones are so priceless. Please keep our Boy cancer free, I pray for CURES .... for every child to have the ability to grow up Lord. We praise you always ....

Happy Mother's Day .... typically I’m lining photos up for an update of Nicky to show you how he is ... today I am wrestling with all my emotions. Whether you have lost a child or not - you are a mother no matter what! This post is not about Nicky....

My dear sister sent me a text that Baby Wade was in the press today ..... Significantly sent at 3:33pm today she told me ... this was the same time he left this world to be with our Lord. They had his departure date wrong but hey … only the ones that love him noticed that.

This day commemorates so many losses … so many for me I have honestly lost count and do not wish to look back to take the time to record the count. My heart aches for these Mothers.

I found myself worried about a mother that lost her only son in January and then I reflect on my own life and wonder where in the world did things go wrong…. I have a mother, yet she left a box on my door steps of all the photos of all my family, there has been no contact for at least 10 months between us … me or, my children – my brother tried too – this box came two weeks ago. Yet all the photos sent in a box…. This happened when I asked her if she was ready to change for us …. I won’t lie …. I need her …. I have for years “BUT” she refuses to see the problem which “her” and ignores us and our cries. I wondered how she spent her day, my brother did too …. I cried and tried to shove it off … my husband asked what do you want to do and I just didn’t want to do anything …

I see two Mother’s in this world …. The 1st … willing to do ANYTHING to be the HERO to be their child’s STAR their WORLD…… the 2nd …. Just don’t know any better …. Ignore their babies no matter how old we are and they give their photos back in a box ….

My first Mother’s Day was my 1st Anniversary, it took 12 years till it landed on the same date today and it's the 2nd time in 12 years ... my Anniversary is the same date as Mothers Day. I am so grateful for the man that I love that is my husband, my rock…. What a precious gift we have. But what I learned  today from my Pastor is that the past won’t heal itself …. You can sweep it under a rug ( huge rug my family had ) but that it doesn’t go away and that it takes people to heal it and communicate and fix it to make relationships work.

Mom …. I love you …. I’m crushed by you ….. I have waited to post this song for you … here it is … ( my brother and I are"STILL" waiting …. )

"Fix You"

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And I...

Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down on your face
And I...

Lights will guide you home
And ignite your bones
And I will try to fix you

Today is the 1st National Ependymoma Awareness Day - Lord please let there be cures found in 2012! Thank God for CERN for collerborating of our kids and adults with this diagnoses.

flor3

Sorry for the delay in posting. As I mentioned a few posts ago we were taking our first real vacation since Nicky's diagnoses. Before you hit play on the video to the left, this gameroom at the Contempory Hotel was an everynight stop and Nicky loved it and the simulation rides. We also met the truest Mullet Man around, notice Nick say is that for real lol. We went to Disney in peek season, not the smartest move but we did it anyway. It was 91-93 degrees and too hot to really enjoy the packed parks but we did our best to manage the heat and get on rides. We did the Animal Kingdom and then Epcot, followed by Universal Studios, and then Magic Kingdom that was so packed we bailed and Christian and I went back at 10pm for 2 nights to hit the rides while Nick and Nicky chilled out and watched movies back at the room. Nicky and I both managed to get sick, he had croup and I got strep throat so after 4 days we were in an emergency clinic off the Disney property for 4 1/2 hours just to have them diagnose us both with what I already told them we had. Almost seems silly to go to the doctors when you know whats wrong, like I should get a discount for doing their job and telling them what to prescribe us. Nicky loved the pool time and even with sunblock 50 he managed to get tan lines! That's a first for him. He hated the Characters lol, but loved to see new animals and would just stare at them pointing saying in the most excited tone, "Whats dat, Whats dat????" We were gone two full weeks and it felt like a lifetime once we got back home. When we got home Nick picked up Haley our pup and you would think she was new - Nicky was so excited to see her chasing her and calling her, "HayNay " On and Nicky got his first hair cut .... THANK YOU ANDREA for being so patient and kind and coming to our home to cut his hair - we love you ... !!!

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Above is a photo of Nicky in the gameroom and the one to the right is him napping in the cabana poolside at the Disney pool.

flor6The last few weeks have been very difficult for me in so many ways. The loss I feel for Kristin, Bree's Momma and her family pains me and in the midst of it all while traveling back home I somehow missed updates and posts on caringbridges and facebook and today while catching up on all my kids I love, I read Brody S. update and learned that my sweet little Arianna had scanned last week, the results were not good and her Lumbar Puncture showed that cancer cells are now present in her spinal fluid. Sometimes I wonder how this world actually exists simultaneously while the rest of the world is moving at a normal pace, unaware. I remember walking into St Jude with rose colored glasses, believing every child there would be treated and healed and my heart was an open door filled with love and compassion for each family I met. I look back at how naive I was, how that approach has brought so much pain and tears with it - but looking back I wouldn't change anything about it because I love them so very much and my life is richer from each child and each family - I hope they feel that way about us too. flor7

Yet some days the pain is so overwhelming and it crushs my energy and steals my "JOY", this is where I ask you to remember to not only pray for the children but for us all as families helping each other because the load is heavy and God carries us to carry each other. Ask God for strength, wisdom and guidance for us parents. However, some calls are heart stopping when a parent is choosing plots for burial, or making decisions on burial or cremation that seems like an injuctice is being dealt reality is so heavy that no parent should ever have to live through. Pray for Kristin's family, Pray for Brody S family scanning soon, pray for Avery C. scanning this upcoming week, pray for Arianna's family .... plain and simple .... please pray for these families. I know I am missing some - forgive me I will remember and add you ....

Bree's family had a balloon release for her celebration of life and though we could not be there - we released at 4pm with everyone else and wrote messages of love to our princess.

Please take a moment to listen to this song/video written for Arriana called "Dance Arianna".... its a wonderful song.

We will once again arrive at St Jude May 28-31. Nickys MRI no matter how many times I ask, keeps landing on a Wednesday and will be May 30, 2012 at 8am. He will have an ABR ( hearing test) the next day followed by a LP ( lumbar puncture). This is the first hearing test since he was radiated and so we need extra prayers that the doctors are wrong and that Nicky can still hear from his left ear. The doctors told us that his left ear was within the highest dose path and that it will be affected. Let's pray that they are wrong. Pray that he remains cancer free and that scans are NED and clear. Pray that he grows up healthy and strong never needing meds or treatment for anything ever again please! You know I will be posting before we leave and remind you all to pray harder, please dont read this and say you will - do it now please!

flor2

We will be walking for CURE SEARCH once again, it acutally lands on Nickys 3rd Birthday September 22,2012 - I am asking you now to mark your calendars for our little man and come out and walk for all the children. I know that the people that showed up last year, were so inspired that they will come back again - please dont miss this amazing event. I will say my husband and I were humbled at the people that did take time out of their very busy lives to walk with us. We are starting early asking for walkers and if you can not walk sign up as a virtual walker PLEASE ... or just donate - this is the only event we will ask you to donate to yearly for Nickys Birthday, for the kids and for CURES. We will be walking for all the children we have lost, those fighting and those that continue to be watched - praying for CURES!

http://www.curesearchwalk.org/southeastmi/nickybear22 

I will leave you with this photo of Nicky and his Daddy .... he loves the water .... GOD BLESS YOU ALL .... THANK YOU FOR YOUR PRAYERS AND ALL THE SUPPORT ....

flor4

 

This photo is of Bree with her Momma Kristin

I have met many families along my St Jude journey and there are some that I have encountered and I recall every detail. For the last few days I have been watching, praying and re-reading everything to make sure I didn't miss anything.  I can remember round 3 of chemo and being at e-clinic for an appointment and looking back - I see it all so differently ... I walked past a day one family with a 12 month old little girl and heard a St Jude employee say, "Welcome to St Jude," these words while I was walking in my typical circles waiting for our appointment numbed me ... it was the horrible signature hello we got 3 months before that. I quickly turned my stroller around and chased the family.... I just said, " Im so sorry your here... here is my number, I will look for you later." As you know for those who follow us .... I always thought buddying up families was great beacuse I met my dearest friend and sister that way, Nicole and her boy that changed my whole world ... Baby Wade. I felt like Jude needed a pairing system .... so I had met Rykens family the day before I met Brees ...they were a day apart in treatment .... it seemed like a perfect fit for two new families ....

How many times do you see God's Hands at work in the "BIG PICTURE"? I would say its rare ---- we live on a ride without control and yet God has control and our fatih is tested ... tonight .... wrestling with so many differenty circumstances .... my heart is so sad to tell you ....at 5:39pm on April 1, 2012 our Bree that I have asked you all to follow and pray for is flying high in the arms of our Lord and Savior, Jesus .... she is with all the little ones we have lost along this journey ...at this time I ask that you pray for her Momma Kristin in preparation of the days that follow in her absence. I ask that you pray for Susan her Gramma that has been by her daughters side every single step of the way. I ask that you pray for Bree's sister Zayla ... she loves her little sissy so very much. We love you Bree - Peace. Love. Bree.

In Lieu of Flowers or cards I ask that you please make a contribution to the family direct as they now have funeral expenses to cover.

This is the email address for paypal.

SusanDGuy@y ahoo.com

breehAs I told you I would be updating on Bree H. she had surgery today and she out of recovery and awake, I ask that you continue to pray. The surgeon believes he removed it all. Tomorrow she will have an MRI to confirm this. Please pray her recovery is smooth and deficit free! I also ask you to pray that her pathology remains desmoplastic instead of a more aggressive form of Medulloblastoma. Better yet - let this just be benign from treatment.

I am placing her website here so that you can follow her if you heart leads you to.

http://www.caringbridge.org/visit/breehaga I have never asked anyone on here to help an individual family. I always promote raising awareness and raising funds for research. Today is different, I have watched this single mother raising two precious girls on her own, with her mothers help. She and her mother both are fighting their own illnesses and yet they are back in Memphis in a surgical OR fighting for Bree's life. This family is struggling truly to save their home so they have something to go back to. While St Jude's does take care of treatment, neither one of these two care takers are able to work to provide any income during this process. Just when things were starting to turn around a bit, Bree's relapse came as a total gut blow to us all. They borrowed a car to get to Memphis not realizing they were not leaving there for the next 3-4 months.They are on waiting lists at Jude and with Habitat for Hope for housing right now. Imagine that? Your child is fighting for their life and you have no housing setup? While this may correct itself - right now they are spending money they do not have for a weekly apartment.

breetSo, this is the first time I really feel like if you have it - please, please give it. It doesn't matter if its only $5.00, or $10.00 I am listing Gamma's email that has a paypal account to it, any amount you can give to help them right now will work. You can even buy a Bree t-shirt if you want, but mainly its not about the shirts - its about helping this family be able to sustain having a home to go back to in 4 months when treatment is done. If someone deserves a contribution - it is this family. My Nicky is rocking a Bree -T Shirt while we pray that she will be healed and restored from surgery and the treatment process.This is the email address for paypal.

SusanDGuy@y ahoo.com

If you would like to help by check :::

Susan Guy
820 Berry Road
Boiling Springs, SC 29316
Attn: Bree
(Make donations payable to Susan Guy.)

The cost of the shirts $15 dollars /shirt and an additional $5 for shipping. If you would like to order one you can mail payment to their home address. PINK / NAVY / PURPLE email the address above, with color and size to order a shirt .. again the shirts are great but I rather just see you donate to help them.  GOD BLESS YOU IF YOU ARE ABLE .... PLEASE PRAY FOR THIS CHILD AND ALL THE KIDS FIGHTING FOR THEIR LIVES!

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