Specific Prayers & What’s Next
I have made this page just for prayers and specific medical updates. The other pages will be for our “living” moments.
Ok… it’s taken me a long time to write this one. Our story started at AHP on Oct. 29th 2009. As you know, I have blogged our entire journey.
As a parent, you prepare your children for many life events. There is no way to prepare a child for brain cancer. From the first day that Noah was diagnosed with this horrible, serial killer of innocent children, I have watched, observed and listened to it’s other victims and their families. I have studied the unbelievable holes in treatment and research for these children. Not by any means saying that it is all bad, there are miracles and the doctors that are fighting with us are amazing, it’s just that they are being out numbered and brain cancer is a completely different beast. By the grace of God, we are here – our family is still together and He is leading us, directing us in every situation. God is in complete control.
When they told us that they saw a tumor on his MRI and that he needed surgery, the first thing I said was “Do you biopsy it?” The surgeon looked at me as if I had three heads. He said “It’s cancer, there is no need.” From there, most of my questions where answered with the same look. “What do we do?” I asked. They brought my husband and I many different studies and protocols. We felt as if everyone was saying “This happened to your son and we are sorry, but now he becomes a study and maybe he can help children 20 years down the road.” No one really knows what to do. It’s trial and error and brain tumors are the number one cause of death in children with cancer.
I was not going to let my son be “rubber stamped” on the assemble line. I wanted something different. I would fight, pray and search until the bitter end. There had to be something or someone on this planet that knew of something different. (I joke that I should be more careful in what I pray for.) 
That being said, I have interviewed doctors from all over the country (really the world) and followed many different paths. These paths have lead to targeted, individualized therapies for treating cancer. This has been my long, tedious full time job for the past year and a half. I have had doctors and researchers on the phone and surprised them with a “conference call” so they could talk to each other. Noah has never been in remission and we believe it is because we are supposed to keep searching and fight for these children to find something new and different to try to save them!!!
Making a long, long, long story short(er) – I presented my list and thoughts to the doctors at Arnold Palmer, (thank you Dr. Levy and Dr. Sutphin,) and we have connected with Dr. Cooper at MD Anderson in Houston TX, who specializes in t cell and nk cells therapies to kill cancer. He will be creating a protocol just for Noah using mutated NK cells (Natural Killer cells that we all have in our bodies) to kill Noah’s cancer cells. They will be put directly into his brain using his ommaya reservoir.
We have been told that this has never been done before; Noah will be the first person on the planet. This will be a “Noah Protocol.” I asked “why?” They said no one wants to be first. We are going to be first. We have nothing to lose and everything to lose. Before this blog, there are only a handful of people who know about this, but I now feel it’s time to put the call out for massive prayers. We will have to go through the FDA, etc., and since this has never been done before, we don’t know what it will do. Right now, this will be happening in August and September. They also think that insurance is not going to pay for it. Possibly 10k+ a day.
This video shows a sample of the idea and lets you visualize what we would be doing. This with T cells, we will be using NK cells. This is from Dr. Copper’s lab:
This is a video about NK cells:
God has opened many doors and closed others. We are following Him in all things. He gives us strength; he is our rock.
Here are our Specific Prayers for Noah:
Here’s something interesting… In our conversations with the Dr. Cooper, he was telling us the process of creating the cells. The NK cells will come from either Dennis, myself, Noah or Landin. Guess where the other cells come from? Rome! God is in control!
Philippians 4:6-7
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Amen.
Heather said,
May 25, 2011 @ 9:04 am
I’ve been waiting for you to announce this! The “Noah Protocol.” He is a little pioneer indeed…a historic man-child! I’ll pray for each and every one of your bullet points and beyond. If you need ANYTHING…just ask. Except for the $10k a day. I work for Disney.
And I’m going to collect on my play date! XOXOXOXOXO
-Heather
BlessedMom said,
May 25, 2011 @ 9:54 am
Hi there! I’m a friend of Donna’s and have been following your blog since your trip to Rome. We have been praying for Noah. This is such a exciting and scary thing you’re about to go through. Will you be setting up a way to ask for donations? I’m positive their are hundreds of people that would love to help, us being one.
Cousin Jenny said,
May 25, 2011 @ 2:45 pm
It’s important to have some tricks up your sleeve! You’ve all got the moxy to make this work. Good for you! Go Go GO!
Love and prayers are still pouring in from your Ohio kin!
Rachael said,
May 25, 2011 @ 3:29 pm
Hi, I am a sorority sister of Donna’s. I’ve been following your blog for some time now also. This is such exciting news. My family will be praying for you all. GO NOAH GO!!! Just from reading about Noah, the words “Noah Protocol” seems to fit him so well.
Angela Youtz said,
May 25, 2011 @ 4:36 pm
I am Melanie Smith’s friend & have been praying for Noah daily. My son Tyler is a cancer survivor. You are amazing in your faith, dedication & determination. I too would move the world to save my child – keep walking by faith! God is in control and he will give you the strength that David had as he faced Goliath. Noah’s Goliath is defeatable!!! You will win!!!
Fran said,
May 25, 2011 @ 8:32 pm
Amber, Wow! What an adventure this has taken you down! The Bean’s will be praying!
Claire J said,
May 25, 2011 @ 10:02 pm
Praying for you daily. Please let us know how we can contribute toward the cost of treatment.
Maybe a 5k run in July to raise funds? I’m a Northlander here in Orlando and would be honored to help in any way that I can.
jackie murphy said,
May 25, 2011 @ 10:16 pm
Noah, is constamtly on my mind. May God give all of you the strength you need to see you through this difficult journey. God bless all of you. You are truly an inspiring family.
Kay , Jay, Lydia & Melaina Coomes said,
May 26, 2011 @ 6:05 am
We will start praying for every one of things on the list today & everyday!!!
Also put a “Noah’s Light Foundation” Tin in my store Funusual in Boston to start helping with that #10K a day!
Melanie said,
May 26, 2011 @ 8:43 am
I haven’t stopped praying for Noah since I met him at the Magic game! God bless him!
Susana said,
May 26, 2011 @ 9:31 am
Amber,
This is amazing! I believe that everything that happens in life, even the bad, happens for a reason. Something good is supposed to come out of it, something that we wouldn’t get to unless we went through that bad part. It’s been hard for me to think that way with Noah’s case. But now I see it. Noah can be the first person to be cured this way. He’s the bravest, he has lots and lots of love and support, and he was blessed by the Pope. As for the 10K a day, I say finally! Finally there’s something for us helpless readers of your blog to feel that we can help somehow (in addition to prayer). I have a little plan in mind that would allow everyone that wants to help to be able to easily do so. I registered http://www.noahprotocol.com and I can give you more details if you want in email. And I know you’re not asking for donations but I also know that there’s a lot of people out there that would love to be able to help and feel like they’re part of this. So, I hope you’re not against it… do let me know if that’s the case though.
Amber said,
May 26, 2011 @ 3:30 pm
Hi Susana!
You are too kind!!! I am going to see if there is a way to take donations that will be tax deductible or something like that. I will never take any money for lodging or anything personal, but medical bills for being first that insurance doesn’t cover… that may be another story. (Especially at those kind of costs!) They said the first is alway the most expensive.
Lorie Shewbridge said,
June 2, 2011 @ 3:32 pm
Amber you are such an inspiration to me, as are Dennis and especially Noah.
I know that you would do anything you could to help your amazing child and I will be praying for all the things you listed every day.
May God give you strength and courage to face whatever lies ahead.
Love, hugs and prayers, always!
Lorie
Amy said,
June 2, 2011 @ 9:10 pm
Amber my friend. We will raise the money needed for Noah’s treatment and the pave the way for saving many young lives.
Claire M said,
June 2, 2011 @ 11:42 pm
Amber -
This is so amazing. I am amazed at your strength. Amazed at how brave Noah is.
It was wonderful seeing you last week. Please keep us posted on all of this as it develops. I am so thankful for this team of doctors you have. You are all in my prayers as are the requests above.
– Claire
Karen said,
June 3, 2011 @ 7:27 am
Hi Amber. I came across your blog from a link on a mutual friend’s facebook page. I was especially interested in following your story because my husband was diagnosed with a grade 4 brain tumor September 2010. He did surgery at first and removed the 7 cm tumor. They then wanted him to do the traditional protocol – which as you know doesn’t have a good success rate. So we decided against it all. He went on to similar research to what you’re doing. He read and read and talked to numerous doctors. Then in January, when the tumor came back, we decided to go to The Burzynski Clinic in Houston, TX to be treated. They are doing some very creative work on brain tumors, especially in children. They are also in phase 3 trials for treating children’s brain tumors. Anyway – he started treatment there in March and is due for his first MRI next week. The doctors are confident that this customized targeted gene therapy he’s on will help combat the cancer and keep it away. The clinic has been very good to us and the great part is that they look at every case as an individual case with specific needs. So each patient gets a different combination of treatments based on their gene types, etc.
Anyway – I was also very intrigued to learn about the “Noah protocol” and will share it with my husband. I think it’s unique procedures like this that are going to cure this disease.
Please know that I will pray for Noah. I think the only reason we are getting through this challenging time – like you – is that we have also put things in God’s hands. It’s his will and he has a plan. We have left the stress and fear to him. And pray that he will keep us strong.
I’ll continue to pray for you and your family.
Karen
Cal said,
June 9, 2011 @ 9:26 am
GO NOAH GO. I HAVE HAD 3 NOAH’S IN MY LIFE. MY GRAND FATHER,
MY DAD AND MY ONLY BROTHER NOAH. PUT YOUR FAITH IN THE ALMIGHTY. REMEMBER GOD INSTRUCTED NOAH TO BUILD THE ARK.
THAT WAS ALL ABOUT SAVING LIFES AND THINGS. CANNOT WAIT
TO GET BACK TO CELEBRATION AND SEE NOAH. UNTIL THEN WE
WILL CONTINUE TO PRAY FOR YOUR (OURS) NOAH.
MAY GOD BLESS YOU TODAY AND ALWAYS.
A FRIEND IN CHRIST— CAL
Jennifer Story Hiers said,
June 13, 2011 @ 7:50 am
amber…..you amaze me. We continue to bathe your family in prayer. Much love
Brenda Appleton said,
June 15, 2011 @ 8:07 am
Since I have been suffering with Siatica for about 8 weeks now, it has been amazing how much more often I remember to pray for friends who are suffering. My encourageing word: Remember, as John said in his letters, “We are Overcomers in Christ” Overcoming evil is ourpurpose on earth, the reason God leaves us here after our Spiritual birth for our training program. Providing precious promises of always finishing what He starts, and providing ALL our needs in the process. PTL and enjoy watching God at work up close. We are with you!
daniel said,
June 29, 2011 @ 9:47 am
Dear Noah
God Is there with all of us
May god bless you each day , may god take control over the body nothing can harm you
just belive god miracle
jesus gave his blood to heal you
kelly joyce said,
July 11, 2011 @ 2:27 pm
Sending prayers your way!!
Debra Larkin said,
July 14, 2011 @ 8:46 am
Amber, Denny, Noah & Landin,
In every cell of my being I know this is the cure. The path (though long, arduous and painful) has lead you to this place at this time.
You are all special but, it is God’s plan to navigate Noah through this and guide him to a cure.
In turn this cure will save many lives.
You are all so brave and beautiful inside and out.
All of our Love and Prayers,
Grandma & Grandpa Larkin
Chris Hendrix said,
July 14, 2011 @ 1:34 pm
Noah’s Protocol – I love it. Noah, you are such a brave and wise boy and I believe that God has wonderful things in store for you.
Amber, I am so amazed by you, by your dedication in knowing all there is to know about this terrible disease and most of all for your commitment to God. HE is the answer and our strength in all things.
I pray for Noah to be healed completely so that God can use him in mighty ways. I also pray for you and Dennis and Landin. May God richly bless each of you.
Chris
Melissa Hauck said,
July 17, 2011 @ 10:29 pm
Prayers have been sent your way!!! Good luck to you all and God Bless!!!
Maria vogwill said,
August 14, 2011 @ 11:04 am
I met you your husband and Noah in Rome. I was in the crowd watching the pope bless Noah as I was leaving I ran into you and your beautiful family. I told you God had a purpose that day for us to meet. I was hurting a lot that day my little grand daughter Sophia May died at birth. my daughter got pregnant again, but she miscarried at 9 weeks. She is pregnant again she is in God’s hands like Noah. our jobs as parents is to fight protect and love you are doing all of that. God bless you. I think of you daily Noah is in my prayers always. When I looked into your sons eyes in Rome I saw a little boy with a deep soul
calvin marcoe said,
September 7, 2011 @ 8:03 am
MAY GOD BLESS ALL OF YOU. I PRAY DAILY FOR EVERYBODY.
I PUT MY MOTHER BACK IN THE NURSING HOME. MY DAD (NOAH)
WAS DIAGNOSED WITH TERMINAL CANCER 3 WEEKS AGO.
I LOST MY BUSINESS TO THE BANK AND FORECLOSURE.
I HAD A HEART ATTACK AT 33000 FT IN APRIL. I ASK ALL YOU
PEOPLE IN FLORIDA TO KEEP ME IN YOUR PRAYERS.
elsie halliday said,
September 22, 2011 @ 3:12 pm
there is power in prayer and in numbers we are praying for your son like he is our own god is a miracle worker and i know your son is gonna be healed in the name of jesus you are gonna have a wonderful testimony from this god is good at all times your family is in our thoughts and prayers
calvin marcoe said,
September 23, 2011 @ 7:41 am
noah, may you know we are all praying for you now and forever.
can’t wait to come back to florida to personally meet you and your family. Father Greg please help noah at this time.
BROTHER CAL
Lindsay Collins said,
October 28, 2011 @ 9:32 pm
Hi I’m sure you don’t remember me but I met you guys at shands Gainesville. It must have been when noahs journey had just started because he had staples in the back of his head. We were both hooked up to our pumps and he was playing with a star wars figure I said you like star wars so do I! We played with his figures and then we played Lego star wars on the wii. I’m glad to see he is still fighting I know this new plan will help him beat the dark side (cancer).
God bless
Lindsay
maria vogwill said,
November 13, 2011 @ 8:50 am
I was touched by Marlie’s story. Glad to hear Noah is doing ok. It has been a year since my grandaughter Sophia has passed, she was taken at birth. In Rome, were we met, you gave me comforting words. As we said in Rome we are all in God’s hands. Noah’s green bracelet you gave me in Rome stays next to Sophia’s bear always Stay strong (mothers have no choice) God Bless you all.
Bonnie Smith said,
March 16, 2012 @ 1:38 pm
Have been praying for Noah and family since we happened to go to your church on vacation in Fla. God’s blessings on all!
Bobbie chandler yardy said,
June 15, 2012 @ 1:11 pm
My deepest condolences during such a sad time for your family. Your son has left a beautiful legacy. I know he is playing with our chaser right now. I’m praying for peace and comfort.