Archive for May, 2012

Date of Celebration!

We have a date for my darling’s Life Celebration!

Saturday, June 23rd, 2012 at Corpus Christi Catholic Church, 1050 Celebration Ave., Celebration, FL 34747

http://www.celebrationcatholic.org

Time and details to come – it will be very child-friendly :-) and everyone is welcome!!!!

Please, Please, Please - In lieu of flowers, donations may be made to Noahslightfoundation.org - (I have so much to tell you – Noah is commanding an Army!!!! I will tell you soon!)

 If you are a Disney employee, please donate this way -

How to donate online with Disney

God Bless You all – Thank you my baby Noah for strength! I am so in love with you!

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A kiss forever.

Thank you again Terri :-)

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No Words… Just Love

 

(Thank you Terri)

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Running Home

There was a time that Noah loved to run. We lived in a neighborhood that was built on a circle. Noah loved to run that mile circle. He didn’t run like a child; he ran like an Olympian. His stride was incredible and his long golden hair would look blow straight back in the wind. He would laugh and smile the entire time. I would tell him “look forward, look forward while you run!!”

He is doing that tonight. Running as fast and furious as he can …laughing…long golden hair blowing in the wind!

Today at 4:00pm, my sweet Jedi Noah went home. His battled has raged from Oct. 29th 2009 to May 29th 2012 – 2 years and 7 months exactly. Praise God for that time and all of the miracles that surround him. He did not lose, he won the race… he went home.

Noah once said “Mom, what if this is all just a dream.” What baby? “I think we start in Heaven… have this thing called life on Earth, then poof…we open our eyes and we are all still in Heaven together – earth was all a dream.” I agree baby…I agree.

Dear Heavenly Father thank you so much for my son…my Noah. Thank you for healing him. He is no longer in pain. Dear Heavenly Father thank you for Your Son, giving all of us the gift of eternal life. Noah, Landin, Dennis and I will be in paradise together forever!

Dear Lord, Thank you for answering my prayers of speed.

God Bless You all. God Bless you my angel Noah. We miss you desperately already. My life will never be the same.

I will write more as I know details.

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Our Love, Our Son, Our Jedi

I am writing this on the weekend so you do not have to cry at work…
even though a 3 day weekend isn’t enough. (I heard it was Memorial Day.)

Before our amazing Disney weekend, Dennis and I were ecstatic that there was no cancer in Noah’s liver, but we both knew that if the enzymes didn’t come down, we would not be able to continue treatment. So, as always, we put on our brave faces and went on our last family vacation. We loved, laughed and made memories.

We by no means are giving up on anything, but from day one, we promised that we would guard Noah’s quality of life. Unfortunately, the enzymes are not down and Noah is in pain. As I write, he is sleeping by my side on pain meds. At this time, it is looking like we may not get the opportunity to go to Houston. Dennis and I are preparing for all scenarios – most are surreal. Wednesday, we came back from Disney and on Thursday my dear friend Terri was brave enough to come over. I had a list of pictures that I wanted and she photographed our family for over 3 hours. Just being a family.

This is what is important; this is what to remember. God gave us a REAL, visible Angel and through Christ, Noah has actually made miracles – we are so blessed!

Many of you have said that you have things for Noah and Landin if you want, you can drop them off at my office, let me know by post or email me. What we don’t want is one more dime spent on us – PLEASE, PLEASE  donate it to Noah’s Light. Whether it be $20 that you would have spent on flowers or $1 for a card – DONATE IT!!!!!!! Help me battle this demon – our fight is not over!

I have more requests. If you want to write something, CLICK HERE  and share your story. We would love to hear a story about our baby boy. Also, if you have every taken a picture of Noah or a video at a party, you can give those to us – that would be more precious that anything. He is a light to so many and there have been so many miracles around him. But that’s why angels are here.

I will keep you posted. I will share pictures. Please pray for strength. Please pray for Landin (I will need a lot of help with baby girl. Noah is not only who she wants “to marry,” but is her best friend. She worships him.)

Please pray for no pain. Please pray for our Angel. God bless you all and I am praying for everyone that reads this blog too!!! We all need strength – you are part of our family.

Philippians 4:6-7

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Disney for a Lifetime

Thank you Walt for bring together the most amazing people in the world. Throughout this entire journey, literally from day one – when Jedi Mickey came to the PICU, we have been overwhelmed and humbled by the outpour of love, strength and memories that our friends (and those we have never met) from Disney have given us. Disney has been a HUGE part of Noah’s positive spirit and joy, as well as strength and smiles to Landin. It is not a “Vacation Destination.” It is a world where pain ends and magic begins. Memories are priceless – a company and people that can give that gift and make life disappear…. that is the definition of magic.

Before I tell the adventure, I want to give thanks – first to God for letting him be well enough to go (I sound like the Oscars) :-) Second, and in no order, Jodi, Heather, Stacey, Patti, Linda, Ellen, Sharon, Darlene, Joe, Katie, Lynda, Connie, George, Meredith, Monica, Christina, Sue and Sean. Thank you, thank you, thank you!!! I’m sure there are many more… everyone was amazingly wonderful.

To the adventure! Noah and Landin did not stop smiling the entire trip! Before we could even check into Disney’s Yacht Club on Saturday morning, a special guest met us at the door!!! Our friend Heather – oh yes… she had someone else with her!!! And look at his wrist – Noah’s Light Foundation! Noah thought that was so cool “Mom, I just so famous.” :-) Mickey guided us to our “ship” and the little captains took over to a galaxy far, far away….thank you Aunt Heather!

Then, we were in “Noah land”; really now both of their lands – Landin loves everything that Noah loves!!! She know every planet, every character Sith or Jedi. :-) We met our most amazing, sweet tour guide Patti. She had an itinerary for a fun filled day! Characters, characters, characters!!! They were so happy!!! Ok… met a non Disney cast member that Noah really liked! (Look at the pictures…you will know… he likes bellies… always has.) Landin knew the agenda had Jedi Training and so other Jedi things – she said “Only if Noah is there to protect me.” It was 98 degrees, so when it came time, Noah was really hot but I said “Lu, you can do it!” And she did. She was so empowered! She got to be special. She walked in the parade! She did Jedi training… alone! That’s all she could talk about and Noah was so proud!!! A part of her character was formed that moment. They got to meet Asajj Ventress, whom we have tried for 3 years! He hummed John Williams all day.

And since it was sooooooo hot, of course we all had to be frozen in Carbonite!!! All day, Noah was giving his Han Solo salute and Lu was “forcing!” So much fun!!!! They had name tags made from Star Tours in Aurek-Besh alphabet (Star Wars Language.) Of course, Noah wanted to be from a planet that they didn’t have, so he settled on Geonosis. We talked with clicks and squeaks all day.

We finally went to the hotel…humming all the way. When they walked in, there was a Star Wars package as tall as Lulu!!!! 4ft tall!! “Mom, it’s to beautiful to open!!!!!” Get this… everyday, they “inspect it”… we brought it home… still not opened!!!! What kids do that!!!!!

The next day, we went to church, fed ducks – Noah came up with the “Yes and No” game… (see picts) and relaxed. The restaurant at the hotel gave the kids desserts to paint!

Monday…WOW! First…Noah’s favorite restaurant – Kona Café! We have been taking him there since he was one. When he was a baby, we would sit by the window, eat blueberry pancakes, then ride the monorail for an hour! (His first Disney memory!!)

Now, this where my babies will NEVER be the same! With magical Disney, and before a parade, all of the Disney Princesses and other characters came together for an unbelievable meet and greet!!! Noah was beside himself and Landin…she lives eats and breathes Princesses!!!! They both felt so strong and special!!! Life will NEVER be the same!!!!

Noah then went to rest and powerful Lu wanted to “complete missions!!!!” (You know … since she personally knows all of the Princesses and is a Jedi!) Magic Kingdom has a WONDERFUL scavenger hunt that sends you all over – they love it!!!!) She was so STRONG!!!! Normally, this is something she would watch Noah do.

What great, great memories!!! Love, joy, laughs… forever!!!! Thank you everyone!!! God Bless you all and Thank You!!!! To ALL of you at Disney…Thank you for making our lives and memories so special!

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Good News!

Just got the call – Liver is good! Praise God!!! We had a scare with his liver enzymes being elevated. They went down, then back up even tough he was not taking meds. Because he has a shunt (that drains into his abdomen) we were praying that the tumor cells didn’t spread to his liver.

Praise the Lord!!!! Good news (for once!)

Thank you all! I’ll keep you posted  -

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Power of specific prayer, update and Star Wars weekends

On Tuesday, Dennis and I received some information about Noah’s Disease that paralyzed us. I’m not going to write about that yet, because we are still processing, talking and praying – but this is why I am writing. I would like everyone to visualize Noah’s brain. See the squiggly cracks on the surface and the ventricles… that’s where the cells are collecting and growing. Visualize and pray – picture them disintegrating and dying. I used to post pictures of his scans and I haven’t – I will again as soon as I can get them. Tomorrow, we have an ultrasound on his liver – another story… can’t talk about yet. Please also pray for the health of his brain and his hand. He has a tremor; it doesn’t stop shaking. His short term memory is also damaged. Legos and Star Wars are still intact. :-) My baby’s beautiful mind… he is so sweet. We are still fighting! (An angel reminded me – visualize and pray – thank you Judy!)

Second, after Tuesdays events, our family is going to spend some unbelievable quality time. We had planned a Disney cruise, but it’s too dangerous – so we are going to stay on Disney property. Calling all “in the Disney know!” Email me if there is anything I need to know – I need to make some REALLY, REALLY special childhood memories – especially with Star Wars Weekends and princesses.

Third, please pray for guidance and the NK cells. The team is amazing – they are working so fast and hard. Pray for the scientists and that we don’t run out of time.

Finally, please pray for the Appleton family. Tuesday, little Blake, whom I have written about before, passed. This wonderful, amazing little warrior has received his wings. I will never ever say the standard “it’s for the best”… or “now he’s at peace… no more suffering”  -  that’s absolute garbage. These children should not have cancer in the first place… they should be children. I will fight this serial killer for the rest of my days.

ps. 12 children diagnosed with brain tumors a day in the U.S.  Can you imagine 12 children being abducted a day? There would be a manhunt – the country would stop! (That’s a pandemic to me.) Ridiculous!

Prayer for Healing
Lord, look upon Noah with eyes of mercy, may your healing hand rest upon him, may your lifegiving powers flow into every cell of his body and into the depths of his soul, cleansing, purifying, restoring him to wholeness and strength for service in your Kingdom. Amen.

Prayer for Doctors and Nurses
O merciful Father, who have wonderfully fashioned man in your own image, and have made his body to be a temple of the Holy Spirit, sanctify, we pray you, our doctors and nurses and all those whom you have called to study and practice the arts of healing the sick and the prevention of disease and pain. Strengthen them in body and soul, and bless their work, that they may give comfort to those for whose salvation your Son became Man, lived on this earth, healed the sick, and suffered and died on the Cross. Amen.

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We are home – He is awake

Thank you so much for you love and prayers. We are home. He is weak but awake. For the past week, he has been sleeping a lot. The last couple of days he has been throwing up too. Yesterday, he was acting strange and then I held his hand and it was “tremoring” and his eyes weren’t ok. He was responding to my voice and he knew who I was, but that is what sent us to the hospital. I was not going to have another seizure. He had an MRI, checked his shunt, pulled labs… everything is still unknown.
I need X-ray vision. :-) We brought him home. I curled up with him, tickled his feet and arms – he slept and I prayed. Whew. (My pillow is still quite wet now.)

Thank you for your emergency response love and prayers! We were lifted a held up by them – you have no idea how powerful they are. I will keep you posted as we learn more. This was taken a couple of weeks ago… my sweet baby.

Dear Heavenly Father continue to guide us and strengthen us. Amen.

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I’m really trying to post positive – Please Pray!

My baby is not doing well. He is winding down and we don’t know what to do… well other than pray. Dennis has just raced him to the hospital and I am waiting on my Mom to get here. (St. Patrick’s Day, Easter…and now Mother’s Day.) Last week, we swam…Noah said “if I could do anything right now… it would be to go on another Disney Cruise”  - we had the tripped booked before he could finish the sentence. I guess we will be canceling that.

I will keep you posted  - Please Pray… even if you normally don’t. I don’t want him to suffer and I am absolutely not, not, not ready. Dear Heavenly Father, you are in control…if Noah is to go home…please help him gently, please help us…please help all that are reading this now. I pray in the name of the Father, Son and Holy Spirit, Amen. Thank you all.

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