Noah… a princess microphone…and a speaker. How he knows Herbie Hancock? I don’t have any idea!!!
Archive for December, 2011
Merry Christmas! pt 3… (This is going to on for a while :-)
So… once again…I designed a card and didn’t sent it. Probably ok… being that everyone I care about is reading this right now so….
Merry Christmas and God Bless You!!! from The Larkins
(Thank you Terri!!!)
Merry Christmas! pt. 2 – Santa is real!!!!!
Dad picked us up from the airport and off to dinner at Noah’s favorite, California Pizza Kitchen! (Lu is so sick of it, I have to go to Panera and bring hers into the restaurant.)
As we told the stories from Birmingham, I thought…we are at the Millenia Mall, let’s see if we can do pictures! (Sorry to break this to everyone, but this is one of the only stops that the real Santa makes to take pictures.)
We finished dinner and headed down to the village where “millions” of children were waiting. When it was our turn, Landin and Noah walked towards Santa and he said “Good to see you Noah!!! And look how big you and Landin are getting!!” Noah turned back to me and almost fainted! The kids eye were HUGE – and frankly, so were mine.” I asked Dennis “Did you tell them their names?” He said “No!”
Santa went on and on, asking about his Legos, Star Wars, Landin’s princess birthday…. we were shocked as were they!!! At the end of the pictures, Santa grabbed Dennis and asked if “the kids enjoyed the message?” Dennis got the biggest smile I had ever seen!! Way back in June, we got a message on his cell phone from Santa!!! It was crazy!!! It was him!!! (And we really don’t know how he got Dad’s cell number!) Welcome to our “Miracle on 34th Street!”
Thank you Santa! For your prayers and your kindness! And I thought you just kept a list…I didn’t know you subscribed to blogs as well!! 
May God Bless you all and to all a good night!
Merry Christmas!!!
Merry Christmas!
I know I left everyone hanging with the MRI results. It isn’t good news and I just didn’t want to think about it during Christmas (and I didn’t want others to think of it either.) We also had a LP (lumbar punch) on Friday and those results came back today. Really not good news. We have never had cancer cells in his spinal fluid, but this time it was positive. I can’t really process it right now, so on to happiness.
The kids and I went to Birmingham to play with the cousins!!! I have 3 words to describe the trip – JOY, JOY and more JOY!!! The brood of 6 children laughed and played and laughed some more. It was delightful!! Not one meltdown!!! From morning ’til night – running, playing and jumping… yes, jumping! Uncle Marc and Aunt Donna have an amazing superpower that causes children to laugh, get fresh air and play outside all day… it’s a TRAMPOLINE! These children got up and jumped for 10 hours a day! (Then slept for 14!) It was such a blessing seeing Noah let loose. All of his life, he has so careful. Never wanted to get dirty… won’t walk on grass without shoes…roughhouse?…forget about it!! This perfect week, Noah played, tossed, bammed, fell. As he stood covered in wet, mucky leaves… “Mom, today I think I almost broke me wrist! It was awesome!!!!
Noah got to go to Marc’s scout meeting and his basketball game. We created princess and Star Wars snowflakes!!! (Thank you Laura!!!)
We were so lucky to be there for Marc & Donna’s Christmas Party! We got to meet many of their friends who have been blessing us with their prayers. “The children were nestled all snug in their beds, with visions of Star Wars Episode II danced in their heads.” The boys begged and we said yes; it was adorable – they are so grown-up, watching Star Wars… but they both needed “Woof” & “Gurrr” to snuggle.
Simply Magical!!! Once again – blessed, blessed, blessed!
I think they are scared :-)
Noah was brilliant at the MRI today! Didn’t move a muscle for 2 hours strapped to a table. Amazing. God bless that baby!
After, they came to adjust his shunt (magnet in his head that controls the valve that controls the flow of CFS,) they asked “Are you waiting for results? Do you have an appt. today or tomorrow?” They all know that I used to want the results before the MRI even happened and I wound not leave until I had them – no exceptions!!!
Well… my heart is different and I think they are scared!
When they asked the question, I said “No, we don’t have an appt.; I think we are back on Tuesday, so I guess we can talk then.”
They froze… Either Mom has gone crazy or she must be medicated!!! Nope… neither. Just peaceful.
Noah and I went to Toys-R-Us (MRI reward toy), California Pizza Kitchen and to the office. He ate 2 pizza’s again and 1000 Hersey kisses! Baby boy weighs… 51.5 lbs!!! He could not be more proud of himself and WE ARE SO PROUD OF HIM!!! On the way to the office he said “Mom, I am over 50 – almost 52!!!! Do you believe it!! Those bad cells must be freaking out!! ‘Hey… we picked the wrong kid to mess with, we better find a different kid!!!” I smiled in the rear view mirror and said “Noah, you are so right!!!!”
Here’s another little note… or a bombshell, whatever!
I … had the… courage to … call the …Audio….Audio….Audio….logist …today.
(Ok, breathe… the first step is admitting it…in, out, in, out…. breathe…:-)
A couple of weeks ago, (yes, weeks) Noah had a hearing test and it was determined that he has extensive hearing loss and needs hearing aides. I couldn’t even say it or think it. My voice, his voice, classical music, birds, tucking in, laughing, lullabies, praying, singing, Dad, Lulu, school, friends, EVERYTHINGGGGGG!!!! NOOOOOOOOOOOOO!!!!!!!!!!
But once again, I’m better now. My sweet baby. He has been through so much – now hearing aides!!!!! Over the past 3 weeks, I have processed every emotion.
Our appt. is Jan. 6th. They will be green.
He is so strong. I love him so much. God bless this baby!
Thank you so much for your support and prayers. God Bless you all!!!
Hospital, decorating, playing, Candlelight Processional, MRI tomorrow and please pray for Blake & Marlie
Hello!
I know – what a crazy blog! Remember, most of our days are like a crazy dreams – ‘lots of crazy things, mushed together! (But blessed none the less!!!!)
In this Christmas season I promise to give good news with the not so.
Our weekend -
A Chemo Infusion, then some fun! In the attic for some Christmas decorating! Ok, so I put them to work…they loved it! Really, we lost them half way through to our adorable neighbors!
Then off to one of Mommy’s favorite Christmas memories – Zaza, Big Grandpa, their dear friends Mr. Ray & Sandi at the Epcot Candlelight Processional!!! Edward James Olmos telling the the story of Jesus’ birth… and actually life and death for us! There was a orchestra and an over 100 person choir! Praise God! We sang and cried… Mr. Olmos cried! We praised Him!! It was wonderful!!! (Thank you Disney!!!)
Then, what else… ice cream of course!!! As they ate, sweet Noah petered. We drove home, sang Gods praise and looked at Christmas lights. Landin added “Mom… guess what?” What Lu? “Advent Rocks!!! I love our Lord Jesus!”
On that note Noah added “Yeah, and I think Jesus likes to be a pirate sometimes.” (Noah was wearing his pirate jacket.) What Noah? I asked. “Mom, you know “O Come All Ye Faithful… ‘Ye’ ol’ Mom” in his best Pirate voice. Crazy kid!
So blessed we are and thankful everyday!
In the morning, we have an MRI – 8:30.
I have so many prayer requests tonight. Of course, I ask to pray for Noah, but I really want our prayers deferred to two other children. Blake and Marlie. Both of these sweet babies and their families need your love, strength and prayers tonight. We are so blessed to be so well in this Holy season. These two families need our prayers. This is the reality of so many families that we know. Even though, we and they know God is in control, they still need strength and peace.
Praise God in all things. Thank you Mary for being the strongest, most faithful Mother ever! The Lord lead us in the paths of peace: let us hear his voice and follow!
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Blake Update:
As a parent you are given many decisions that you have to make for the well being of your child, some are easy decisions to make others are a little harder to make.
When I became a mother, I never thought I would have to make some of the decisions I have made in my children’s lives. Some were really difficult to make and some were made without a second thought.
On January 1, 2008, everything changed and new decisions had to be made…decisions on things that would possibly save my son’s life. For nearly 4 years Blakey has battled his brain cancer and has proved over and over how strong he is and has shown so much strength. In those 4 years, there hasn’t been a day that went by that I didn’t worry if I made the right decisions for him. With every decision, the thought was in the back of my mind, “What if I made the wrong decision, what will happen?”
On October 20, 2011, I received the news that Blakey’s cancer was back. Words that no parent wants to hear about their child and news no child wants to hear is that they have to begin treatment again.
The words Blakey said to me through his tears will forever be with me…
“Mommy, I don’t want to do the chemo anymore, but I will do it for you because you love me and as long as you are there to hold my hand like all the times before.”
As me and his dad met with the doctor to discuss the treatment plan, the doctor uttered the words that I thought I would never hear…
“If Blakey’s cancer doesn’t respond to this chemo, all we can to do from a medical stand point is make him as comfortable as possible.”
At that moment my heart broke, I felt so numb all over and felt so helpless.
As the doctors started the treatment Blakey laid there crying telling me that he didn’t want to anymore chemo, that his body just could not take anymore, I had a feeling in my heart that he was right. As bad as it hurts, Blakey has fought hard, but he cannot physically take anymore chemo.
On Tuesday, November 22, 2011 Blakey had another MRI. The MRI showed that the chemo had not grow or spread, however the chemo that Blakey has done this month has not killed any of the cancer. After we left the hospital, we stopped at Chick fil-a for lunch and while in the restroom Blakey looked at me with tears in his eyes and said…
“Mommy, I love you and please don’t be unhappy with me, but I don’t want to do the chemo.”
I told Blakey that I could never be unhappy with him. I was so happy just for the fact that I had him and I would do whatever he wanted.
On the way home I spoke with the doctors and asked them if Blakey did 2 more cycles of chemo, did they (the doctors) think that would kill the cancer and put Blakey back into remission. The doctor told me that from a medical stand point Blakey would not go back into remission. If he continued with the chemo it would only keep the cancer from growing or spreading until the cancer learns to become stronger than the chemo. And once that happens Blakey would have to stop all chemo.
I have had a battle with myself over this and I have come to peace with this decision. I want to honor Blakey’s wishes. I cannot keep asking Blakey to continue to take this chemo because of my own selfish reasons. I want nothing more than for Blakey to be cancer free and pain free and not to suffer anymore.
This Thanksgiving, I am so thankful for the 8 wonderful years that I have had with Blakey. He has been such a blessing to Morgan and me and he has touched so many people in so many ways. So unless Blakey changes his mind between now and Sunday, at this point in Blakey’s journey, he has asked not to do any more treatment. And I want to honor Blakey’s decision. Blakey knows his body best and only he knows how this chemo makes him feel. Blakey is tired and has fought so hard for so long and he deserves to make this decision.
Everyday I pray for a miracle and that Blakey’s cancer would be taken away for forever. Blakey deserves to be able to live his life to the absolute fullest.
Thank you to everyone who has and is still praying for Blakey. Please keep the prayers going up for Blakey. We will continue to pray for a miracle from God!
~Miranda
Please Pray for Jason, Miranda, Morgan & Blake
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Marlie Update:
Posted 6 hours ago
Hello Team Marlie-
Sometimes I am without words but feel that keeping the ones who love Marlie and I informed is so important. Marlie was taken to Arnold Palmer Hospital via ambulance today because upon waking I found her purple and cold but breathing. The wonderful and loving team at APH explained that Marlies breathing became labored as a result of her muscles relaxing to the Morphine. She will adjust and this may or may not happen again. We are home now and it is really sinking in that we are in the final days or weeks of Marlies life. I fear she will spend it all sleeping and gasping for breath, when I so badly want to see her smiling and laughing and being silly. I want to talk to her and hear her stories. Please pray for her to be comfortable, to not be in pain, that I understand her needs and she knows we love her. Please pray for Marlie’s cousins; little Owen, Nathan, Ethan and Katie, they are so close and their little hearts will soon break. Pray for their parents as they explain death to their children’s fragile hearts.
Today as we surrounded Marlie’s bed in the hospital I was with my sisters, brother-in-law Rob, Nana and our very special medical team. Marlie and I are loved and blessed; despite the circumstances I can find peace because we are so loved.
Thank you Team Marlie for your prayers.
Sarah
Please Pray for Sarah & Marlie
Lulu and Mommy Project… come buy it!
My sweet girl. I have been trying to make quality time with just her, since our lives completely revolve around other things.
So my little artist and I have decorated trees as a fundraiser for the most amazing school on the planet! Landin is so dear… every gift she is ever given, the first thing she says is “I bet Noah would love this…I give it to him” or “this gift is really for me, not Noah?” Whew. She picked the trees and let me tell you… you haven’t seen a “Princess Tree” or a “Fairy Tree” until you have seen these!!! Magical! And not once did she say “I want this!!!” or cry, pout, …no “this should be mine!!!!” She is giving to the core, she picked everything that went on it and sang the entire time we decorated. “Mom, I can’t wait to see the special girl that gets this – she will be a princess!” I have to say, Noah loved it too! (We let him help a little.)
Noah is going to make some special decorations for the event as well. It’s on Sunday, Dec. 11th, 1-4pm at the Montessori School, 901 Begonia Ave, Celebration FL. Don’t decorate this year!! Come buy!! We will be there!
My sweet baby girl! What a trooper!
p.s. Sorry for the “no shirt” – she is always HOT and it’s impossible to keep her in clothes. But then again, aren’t most cherubs clothes-less?
p.s.s. No, I’m not showing the trees, you have to come see them!!!
No MRI
Well…no MRI last night. As we were sitting there, I was going through my “MRI” list in my head – 1) he has cream to numb his port for the IV…check, 2) we have a movie and a back-up…check, 3) we have woof (his snuggle pal)…check, 4) Pants with no metal…check, 5) I have my Magnificat (prayer book)…check. Oh no. I asked “who is going to adjust his shunt after the MRI?” The scramble began and the long and short of it - no MRI. We had to reschedule for next Wednesday because he has chemo all day today and this type of Chemo closes the blood capillaries and you don’t get good images.
Whew. Physical, Spiritual, Emotional prep…reset for Wednesday.
We once again “made lemonade” and went on a “Mommy Noah date”. First, and with the help of my dear friend Dan, the comic book store! (Yikes!) Dan was madly texting me comics and books that were appropriate. Noah is on a mission! He is even still singing the songs from “Spider-Man – Turn off the Dark!” (Right before the “MRI,” I told him that Spider-Man posted a note on the blog about him being a superhero…He was SOOOO EXCITED!!! “What!!! He knew I was in NYC!!! He KNOWS ME!!!! Thank you Spidey!!!
p.s. Noah has never seen the blog, he just knows about it.
Anyway, after that, off to Noah’s favorite restaurant – California Pizza Kitchen! Everyone that knows our situation knows that one of our biggest challenges with Noah is eating. It’s the bane of our existence. Two years ago, before all of this, he was 50 lbs. Then, went down to 32. Since then, we have inched up and back, inched up and back. We are now at 49.5lbs. Guess what? Now that he is a “Superhero”, he ate 2 pizza’s last night!!! Not 2 pieces…2 PIZZAS!!! “I need to be strong! You know Mom, Muscles!!!” PRAISE GOD!!!!
And thank you too, Spider-Man!
