Noah…may the force be with you!

Yesterday was brutal. Noah threw up 4 times and was so sick all day. He couldn’t eat…super nauseous…couldn’t even smell food. Most of the day, he slept. We couldn’t figure it out, then it hit me. He was “hungover.”

At the MRI, I told them that a little propofol goes a LONG way with him. (He was put to sleep for this one to do an LP – lumbar puncture in his spine to collect fluid.)  The MRI takes 2 hours, so it was supposed to be over at 2. It still wasn’t over at 3. I was livid!!!!! I told them to get him awake!!!! Then we go back and I find out that not only did they give him TONS of propofol, they also gave him Versed on top of it!!!!! Then they said he kept wiggling like he has to go to the bathroom, so we catheterized him!! I WAS FREAKING OUTTTTT!!! I said “his bladder had NOTHING IN IT!!!! I took him to the bathroom right before he went in and he hasn’t eaten since 7pm the night before!!” “No, it was really full” they said “because we gave him lots of fluids.” WHATTTTTT!!!??? WHY????!!!! And I still never got an answer about that. So not only was he completely sick, asking “why do I feel so weird mom… my eyes are so wiggly” but he had a sore, red “winky” and pain peeing.

And then the news on top of this.

So, I slept on the floor with them. Crying (silently), praying and snuggling in our sleepover.

Now it’s Sunday. Noah wakes up. “Mom, I feel so much better than yesterday.” (Thank you Lord.) “Can we please do something as a family today like go to Disney?” Off we went. We ate breakfast at his favorite place (Kona Cafe)… laughed and played. Landin rode Dumbo, the carousel and (Noah’s favorite) the “people mover” for the first time. Noah and Landin drove the cars for the first time. It was a great day…hard… but great. We can’t waste one second today worrying about tomorrow. He is here now. We are together now.

Tonight at church the question was asked “do you wake up in the morning happy, thanking God for a new day or do you wake up saying when can I to go back to bed.” (I sighed ) The sermon was about Jesus gathering Peter (Simon), Andrew, James, John… they left their “nets”, families and homes to follow Him, not knowing how life would be or how things would end up. Dennis and I are thankful for every new day. We are following Him. He is in control. When we say prayers at night and pray for healing, Noah says “Mom, you’re not praying for me are you…because I am well…I am total healed.”  I think of this often. Noah loves the Lord and has a strong, strong faith. He is in Faith Formation (religion) classes and he can’t get enough. He has learned all the prayers that he is supposed to know and wants more each night. One of his favorite things was learning about Advent this past Christmas. “Mom, let me teach you about Advent… it means “to prepare.” I would sit and let him teach me. Is he well? Or… (from the mouths of babes)… does he know his soul is well and will be well with God. We are on this planet for such a short micro-second compared to eternal life in heaven. How I wish I wasn’t just a human.

“Mom, you know we never die… we live forever!” I know baby boy… “Mom, I bet there are millions of Legos too!”

ps. By no means should anyone think we are strong… Dennis and cried for over three hours and I almost threw up all over our bed. And yes… my stupid vertigo is back. I can’t walk a straight line.

Dear Heavenly Father, please help us walk with you. Help all of us understand your grace. Thank you for all of our blessings. Help us with peace.

pss. I love you Walt Disney. Ha, ha – can’t see me cry with my sunglasses on!

I can’t really type or breathe right now, but I owe a post. The tumors are worse… the cancer is more. How do I look into my baby boys eyes…how do I look at Landin. How do I watch them love each other so much. They are all snuggled down in the back room again for their weekend sleepover. (We do it every weekend now…Dennis and I should win Academy Awards for acting.)

Seven years is not long enough.

Dear Lord, I pray for a miracle for my baby boy. Dear Heavenly Father help us. Amen.

Good morning! It’s MRI day. Dennis will tweet…Noah will lay still…and I will pray. Please join me .

We will update as the day goes on. Thank you!!!!!

It is POURING outside. Since 2009, it has rained every single MRI day. Isn’t that weird???

Has it just been ONE DAY!!! I feel like it’s been a week!

By the end of Wednesday, Noah was feeling better and Dennis and I were lamenting over whether to try the pill again. On one hand, we have to protect his quality of life and on the other we want this cancer gone!!

So…we gave him the pill again. What a roller coaster.

We stayed up and watched him pretty much all night. (Lulu had a horrible night as well – she has night terrors – surprise, surprise.) And by the grace of God and your prayers, he did really well.

He got up in the morning (Dennis and I balancing on our eggshells)… he got ready for school…and off we went. Once we got to school, he wanted to walk Landin to class, so he did. I waited for him to come back. Karen (the school’s director) and I talked (she is superwoman); several other teachers came and hugged me  - giving their support.  (There is not a more amazing school than Montessori School of Celebration – I have no idea what I would do without them!!!!) He came back and I explained that if he felt sick or nauseous, sip his water or run to the bathroom. He gave me a kiss and said “I know what to do Mom, I’ll be fine” and he went in.

I stayed in Celebration all day. I checked on him at noon – he was fine. By the time I picked him up at 3:15, he was running around like a crazy boy. Dancing, hugging, begging for a play date with Nate. I constantly feel shocked… sometimes I feel like it’s a dream… just completely surreal.

He is now tucked in… asleep… safe in bed and we are trying it again tonight.

Thank you for your prayers!! God is in Control. God is in Control. God is in Control.

I was going to post this last night… I wish I did.

We had our EKG and labs yesterday to start a new chemo. Noah’s tumor was “Gene Chipped” to see what it was made of. The results came back with a “top ten” components list. Five of the ten markers are fought with the same drug – Dasatinib. This is also used to treat Leukemia. It’s a pill. Two weeks on…two weeks off.

He took it last night and went to bed. This is where I was going to ask for prayers.

The night was long (for me); he woke up with a raging headache, stomach pain and lots of nausea.

Now I will ask for prayers. Prayers for healing for my baby…prayers for direction in what to do for Dennis, myself and the doctors.

Noah has his next MRI on January 21st.

Thank you.

Will and Adam are amazing!! As we were driving there, we passed so many runner and I burst into tears (uncontrollably!!) My kids are sick of hearing about “tears of joy!” (Even if that’s my cover )

From Will’s Blog:

A great 26.2 mile run today at the Walt Disney World Marathon! Adam and I crossed the finish line together just 4 hrs and 21 mins after we started at 5:40 am. The weather was great and as an added bonus Noah himself was waiting at the finish line to see us. What a great day! Go Team Noah! (we did)

It was our great day!! We were overwhelmed. Noah kept saying “I know we are going to win!!!” I said “Noah, they finished and that means we won!” He was so proud and excited!! He said “Why would they run for Noah’s Light?” I said “They are really cool and want to let people know about all of the stuff you have to go through” he said “they have good, strong character!” I laughed and said “you are right!” He said “I should have named it ‘Noah’s Blaster’s’ – then Will and Adam could have used blasters!” Their feet were their blasters! I told him that Will almost stopped at mile 18, but he thought about all that you have been going through this past year and it made him run faster. “He said really? Because of me?” He got the biggest smile!! I want to run Mom!! …Me too Noah…me too!!!!

Thank you guys so much! You are Noah’s Light and your light is blinding!!!! Go Team Noah!!!!

Any runners out there? Our dear friend Will Gay and our new friend, Adam Voigt, are running their first full Marathon, the Walt Disney Marathon, on Jan. 9th. They created “Team Noah”!!! He designed these cool shirts (he is an AMAZING artist and designer!)

He is hoping to have others join and have this be the start of “Team Noah – running for a cure!” He came up with the idea and hopes that this could be a starting point for others who want to run other marathons or even 5k’s as groups etc., all raising money and awareness for Noah’s Light Foundation and the fight against pediatric brain cancer. If anyone is interested, please post or email me!

amber@noahslightfoundation.org

Thank you Will and Adam! You rock!! (and run like the wind!!!!)

We will be there cheering you on!

Only 4 days to go until the Disney Marathon. Support @willgay.http://post.ly/1QvzQ#GoTeamNoah.

Happy New Year!!! I tell you… last year was…a doosie!!

Last week, we had time as a family in Gainesville. It was Landin’s first time at Shands for treatment. When she started to chant, “Noah is going to get a needle in his head and I’m going to cheer – GO Noah GO!!!” Dennis and I look at each other and decided to go with it. (I think we are in complete shock at every turn now, so what the heck!)

We are so thankful to be here! (Thankful and terrified at the same time.) Last week was brutal, but not half as bad as last year.

Last year:

This Year!

Tonight we are home and blessed! We are having a sleepover in the living room. Both babies. So thankful!!

God Bless you all! Here’s to a blessed New Year!!!!!