Noah…may the force be with you!

Hey, Everyone…this is Larkin family friend, Maryellen Hooper. I know you all are like me: hanging on the edge of your seats, wanting to know how the trip is going. Well, I got a message from Amber yesterday and I wanted to try to share it with you all:

I was standing in front of the dressing room mirror in Kohl’s, trying to squint away years of no exercise. My two boys were sitting on the bench next to me, fighting over who’s turn it was to play Angry Birds on the iPad. My phone rang. I glanced at the name on the screen to see who I would be ignoring. “Amber Larkin”. AAAHHHHH!  Amber’s calling from Europe?!!

“Hello? Amber? Are you OK?”

“Hey…” She was talking a mile a minute. ” …this is costing $1.49 a minute so I have to talk fast!”

“OK,” I said, as I glanced down at my fighting boys and gave them the Mommy-eye-threat. “I’m listening.”

I don’t know if it was the speed at which she was talking, the unbelievable stories she was recounting, or the fact that I was trying to sound like I wasn’t in my underwear in a dressing room at Kohl’s, but my head started spinning.  From what I heard, their trip has been a roller coaster so far. They spent their Paris day in a hospital (Noah got a fever…he’s fine now), missed their tour (no refunds??!!!);  bomb threat at the Eiffel Tower; naked and screaming at Lourdes… and that was just the first 5 minutes of  our conversation!

They got to Venice and things were looking up. That’s where she was calling from.

“Can you do me a favor?” she asked.

“Sure. Anything.”

“Can you guest blog for me and tell everyone that I will fill them in with all the details when I get back, but I wanted everyone to know that we’re still here and (just like the past 18 months) we’re gong to make the best out of the situation and have an amazing time . Thank everyone for all their prayers, never-ending support and really great hook ups! Noah is so excited and can’t wait until the Dubai part of the trip. Also, and this is very important, I need to make a few corrections to the article on Noah that ran in the Dubai paper, so please tell everyone to HOLD OFF on sending that out anymore.”

“Got it. No problem. I’m on it. I miss you guys…WE ALL miss you guys. Have fun and get home safely.”

“We miss you, too. I have to go now…Dennis is pointing at his watch and mouthing things I can’t repeat.”

Then I put my clothes on, gathered up my boys and left the dressing room through a crowd of glaring woman who were all waiting for their turn.

Disgusting! RT @BePositiveFdn: Can u believe that only ONE childhood cancer drug has been developed & approved by FDA in the last 20 YEARS?!

This was a tweet – I want to change this!!!!

Ok, here’s my secret! Remember my “We are living” statement… well, here it goes! Tomorrow morning, Dad, Mom & Noah get on a plane to Paris, Lourdes, Venice, Rome and yes.. Dubai! As most of you know, Noah’s dream, since he was 4 years old, has been to go to Dubai.  Family and friend’s are keeping baby girl at home; this needs to be for Nono. (That’s what he called himself when he was a baby.)

We weren’t even sure if we could go, (he had a very bad day today) but we are going for it! (It’s ON!) There are MANY, MANY miracles that have lead up to this and that will be apart of this trip!

Stay tuned!

You are not going to believe all that is happening – I don’t want to blog about it until it comes to past, but things that are supposed to happen are amazing!!! Our God is an AWESOME God!! (Noah & Lulu’s favorite song!! Thank you Brad!!)

Miracles are in the works! God Bless you all and God bless my babies!

What a surreal day!!! We started at 9am on our knees praying as Noah received new chemo drugs (in which we had no idea how he would react) and ended up having the best time that we have had in a long time as a family!

We went to the hospital at 9, he was hooked up to fluids (IV/port) and prepared for new chemo. Dennis and I had meetings about all of the side effects… I won’t bore you with that huge list… and we began blood work, urine testing and chemo. Two new chemos… waiting between each to see how he would react. I left to get prepared… running to the store to get extra underwear (to keep in my purse), imodium, nausea meds, plastic bags…etc. Dennis would text me … “So far so good!” Thank you Lord!!!

By 4:30, I ran home, grabbed Landin and we flew to the hospital. Dennis said “I think he’s ok…I think we can go!” I picked them up in the APH drive way, whipped off his clothes in the car, threw on Magic gear and off we went!! Weeks ago our dear angel Amy Reinbolt wrote a letter to the Orlando Magic telling them about Noah. Our other angels, Kim James and Melanie Diaz from the Magic wrote back, inviting Noah and Landin to be VIP guests and sit courtside! (At the time, Dennis and I just looked at each other, praying that he could do it – we didn’t tell him incase it couldn’t happen.)

We went and it was glorious!!!! Laughed all night and had the best time!!! Noah met everyone and you will see that FOX Sports even thought he would make a good reporter. And of course, Noah LOVED the girls!! He said “Hubba, hubba…” Landin took pictures of the popcorn and danced like crazy! This was Noah’s first game and at the last second…they WON!!!! It was Magical!!!!

We want to thank everyone from the Magic…Everyone…Amy, Kim, Melanie, Mr. “Outlaw” , Mr. Anderson, Mr. Boyce, the entire Community Programs staff, the players, the dancers…they all were so wonderful! All night, they checked on him to see if he was having a good time!!! The night couldn’t have been more special!! You have made Magic fans for life!!!! Noah was cheering and smiling in his sleep last night!! He hasn’t stopped talking about it today! His mantra for the day – “Orlando Magic!!!! You ROCK!!!!” Even Chelsea Redick and her friend Jennifer came over and offered to get Noah’s shirt signed for him. (Noah was wearing #7, JJ’s number. We will take you up on that soon!) You are so gracious!

Thank you and God bless you all!

And the Noah chemo update… day 2… no side effects so far!!!!! Praise God!!!! Because of this news, my next blog is going to be a whopper!!!

Thanks to some amazing people, Noah has been asked to be a VIP at tonights Magic game!!!! We are sitting on the sideline right now and he and Landin are going to open the game with the players!!!! 7:00 Magic vs Nuggets!!! (I picked them up from getting chemo at 5:00!!! Came straight here!!

Ok, now that we have had a moment to process, I can write something. The MRI showed that the tumors in his ventricles are growing even on treatment. That is the worst case we could have been told because there are not many other viable options.

Now, while he is feeling good, we are going to continue to live and experience every moment that we have as a family.

That being said, for those of you who know me, the word “NO” is not in my vocabulary. I must be dyslectic, because I think it says it’s “ON”!!!!

After some brainstorming and searching, God has yet again opened another door – another blessing. This is by far the road less traveled, as a matter of fact, Noah would be the only person on the planet to have tried this. (But doesn’t that sound like something Noah would think would be “so cool!” ) I will elaborated as things become more solidified; it’s too early now. The short term goal is we need something to stop the growth and buy us time. We need at least 6 months. We are trying another chemo that he hasn’t had to see if it will react and give us a pause.

God is still in control. We have said this entire time (since day one) that we wanted something different and “out of the box” to cure him and protect his beautiful mind. (Well, maybe I should be more careful in how I pray. Just kidding.) We have always prayed for guidance and His will to be done. We are following (as best that we can) the doors that He has opened and recognizing the ones that are closed. (I write this as if it were easy… it’s not, but we believe in Him and His grace.)

Just know that no prayer is ever wasted! This is a war – about one million times a day Dennis and I say “satan, we rebuke you in the name of the Father, Son and the Holy Spirit.” We will not let him put evil images or thoughts in our hearts and minds. We do not question “Why is the happening?” We ask “What are we supposed to be doing with this?” Noah is our blessing and we will never stop believing and praying.

I will keep you posted but there may be a little lag while we are working on this new miracle! Back to Positive!!!

Pray for time, pray for healing and pray for miracles!

Thank you and God bless you all! God bless my sweet, joyful, “selfshark” baby boy!!! I love you!
(You will have to had read the blog for a long time to know what “selfshark” means.)

Happy St. Patrick’s Day! (Noah’s favorite color is Green!!!! and He’s Irish!)

This was the verse today:

St. Patrick, Bishop, Mar 17
Matthew 7:7-12

Ask, and it shall be given you: seek, and you shall find: knock, and it shall be opened to you. For every one that asketh, receiveth: and he that seeketh, findeth: and to him that knocketh, it shall be opened. Or what man is there among you, of whom if his son shall ask bread, will he reach him a stone? Or if he shall ask him a fish, will he reach him a serpent? If you then being evil, know how to give good gifts to your children: how much more will your Father who is in heaven, give good things to them that ask him? All things therefore whatsoever you would that men should do to you, do you also to them. For this is the law and the prophets.

I can’t really type yet and I don’t want to say anything that’s inaccurate. We have another meeting tomorrow and I will know more, but right now it’s not good.

God Bless you all and thank you for continued prayers. It’s hard to type when your hands are shaking and you can’t see the keyboard.

We love you all!!! Amber & Dennis

On Sunday night, the night before Noah’s MRI, there will be a prayer vigil for Noah from 9pm until 9am at Corpus Christi Catholic Church in Celebration.

Thank you and Gob Bless you Brad for organizing this. We will be there.

Our MRI is at 7am.

Let me explain. Mr. Noah has an obsession with Crayola crayons, among other things. He creates, colors, makes numerous journals of fruit, vegetables, minerals & crystals, M&M, bodies of water, landforms and …just colors. Well, several months ago he invented “Color Lasers.” These are crayons that he can point at something and it turns that color. “Mom, the sky is so gray …. peeeerrrwaw, peeeerrrwaw… I blasted it and now it’s blue.”  A couple of days ago, he begs me to peel the label off his prize color lasers, because that would make them “more powerful.” I begged him “Noah, you will not want this in a couple days, I know you.” He held his ground.

Today, before he went to the hospital for an infusion, he walks in looking like a puppy with big, watery eyes and a wavering chin. “Mom, you know how you always say there’s always a solution…well.. I need you to get wrappers back on my color lasers. Dad said it’s impossible” as the giant tears fell with a blink.

So I sat, got a crayon, exacto knife, peeled a new one, scanned it, redesigned it, glued, wrapped and rolled. Custom “Noah’s Crayola Lasers” were born. He designed them with a button this time to “blast the color” out. Oh yes, we had to put the names in english, spanish and french. Welcome to crazyland.

Please pray for Monday. Thank you.

Prayer change – Noah’s MRI is now on March 14th – this coming Monday morning (very early) here at Arnold Palmer Orlando!

Philippians 4:6-7

(This verse is printed on the inside of Noah’s bracelets.)  :-)

Dear Heavenly Father, Please bless my son Noah with all of your healing graces. Please remove the cancer from every cell in his body and let him grow to be a strong, Christian man. Amen