Dexter Lawrence Authentic Jersey  Updates

Updates

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."

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  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.

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

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 ....

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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