Praise the Lord!!!! We had our meeting about the MRI and good news! The “train tracking” tumors up and down his spine are gone and the 2 inch tumor in the base of his spine in now about a 1/2 an inch and has fluid around it!!!! Things are changing in a positive direction!! The residual film of cells in his brain has not changed, but once again - in God’s time not mine. We are not moving to Gainesville for 3 months now; we will be continuing in Orlando for the next 2 months, then MRI time again. Dr. Smith was amazed at how wonderful he was doing and how strong he is. His is 46 lbs!!! (Far cry from 35lbs!) Thank you Zaza, Big Grandpa, Aunt Donna and Bebe for coming to be with us – We love you and thank you for the support!
Thank all of you for prayers!!!! This is a testament to the power of prayer. Thank you Lord for answers and blessings!!!! God bless you all!
I will be posting pictures soon!
He will be out in 5 minutes. We talk to the Dr. At 2.
Thank you for your prayers!!!
I’m trying to remain calm. No countdowns. No t-minuses. But guess what - I can’t.
We have 1 more day until this MRI. I know this is in the Lord’s hands, but I am asking for everyone to pray, pray, pray. I know you have been and I am so thankful.
I haven’t blogged this passed week because I was trying to pretend that it was “any other week.” That this Tuesday is “any other day”. But it’s not. We were so blindsided on Feb. 12th, that I can’t even prepare myself for this, nor will my mind let me think about it. (Maybe that’s God not letting me think about it. Trying to tell me “have some peace, don’t panic… I’m in control.”) How I wish I wasn’t human.
My defenses have always told me “prepare for the worst and it’s never that bad”… but in this case I can’t even let “the worst” enter my mind. It can’t be that. I cannot have that. It is not that. This has been a longest month of our lives and I didn’t even know had passed. We will be headed to Gainesville tomorrow night and his MRI is Tuesday morning.
Dear Lord I pray for my son. Please let all of the cancer cells be gone… completely gone for the rest of his life. Forgive me for my shortcomings… forgive me for my worrying. I know we are following You and You are in control. Help me remember that. Please take care of my baby. I ask these things in Jesus name. Amen.
So, baby boy got some platelets, some antibiotics (just incase), a blood transfusion and I think they are coming home today!!!! Yeah!!!!
Just for fun…let me show you the differences between my children -
Who is the engineer and who is the artist? Sorry Noah, we have no play-doh that isn’t one big unorganized mush now. (It makes him crazy!! )
The “s” word in our house is stupid. I give myself permission to use it. Yesterday morning his fever was gone, but once you check in… you get to stay… at least for 48 hours “fever” free. So… Amazing Daddy and Amazing Noah got to sit there all day yesterday (and today) coming up with things to pass the time. Poor Noah had to be accessed again… He was promised it wouldn’t be for another month. My sweet baby… or should I say teenager. He has aged years!!!
Ok, now for blessings. I was just giving thanks this morning for how great Noah looks and how we was acting like his old self again. With Dad’s permission, I may have to post a picture without his shirt (he’s showing his muscles ) just to show how much weight he has gained! No more bones! Oh… and the “arm test” (the only thing that we have not and will never tell him the truth about), he has MASTERED it!!!! (It’s a shot that Dennis and I have to give him in the back of his arm – we pretend to take a measurement.) It used to take several people holding him down while he screamed, thrashed and begged for us to save him. We knew he couldn’t feel it (because of the numbing cream) he would just panic! Not any more. Thank you Lord! He sits and says “Go ahead Dad!” and “Dad, you are so good at that now!!!!” Dennis then tells him, “I’m practicing Buddy, I’m practicing!!”
Thank you Dear Lord for all of our blessings. Please take care of my boys in the hospital. We continue to pray for all of the cancer cells in Noah’s body to be removed forever. I also pray for his spirit. We also pray for baby Charli. Dear Lord hold these children and heal them. In Jesus name we pray, Amen.
He hasn’t thrown up all weekend. He was so happy and playful. All in all, a great weekend!!! (By our standards.)
Friday night, Noah’s feeding tube had a clog that we couldn’t get out and his nose had a little sore where the tube rubbed. It had been in too long. Mom and Dad had to play nurse and take his feeding tube out and insert a new one in the opposite nostril. Not fun, but he was such a trooper!!!
Saturday - Great day! Family came over to visit with Noah and Landin while I attended a memorial in Lake Wales. He was in the best mood! Thrilled about school on Monday… building Legos… got to talk to his cousin Marc…singing!! Great!!
In Birmingham Alabama, Uncle Marc and the Ancient Order of the Hibernians organized a fund raiser for “something” that I will be announcing soon. They raised lots of money and Marc got a new look! Thank you, Thank you, Thank you!!!! (And Thank you Aunt Donna!) You are helping Noah and these children have future and many more St. Patrick’s Days!!!! We love you! (And miss you!)
It felt like there was such a momentum! Like we were on such a good track getting us to the 30th! Nothing else “bad” to do. No other major hurtles for the month. He was so happy!!!
It’s Sunday – Noah is back in the hospital with a fever and I may not stop crying. They are driving there now…I’ll keep you posted.
Thank you for the prayers – We love all of you.
Noah got to go to school today! I took an iMac into class and didn’t even get in the door without being mobbed – a 4 foot mob! They screamed “Noah’s Mom!!!! Is he here? Can he come? You know he hasn’t been here since Oct. 29th!!!” I know…I know.
On the opposite side, back at home, Noah was so excited and getting prepared. “Dad, I’m a mess! Please get some lotion a slick back my hair!” So cute!!!
Then, I plug it in. Pure Joy! The kids went crazy, Noah went crazy! They laughed and laughed. One more amazing blessing!!!
Ok - It started with Mrs. Saint-Leger from the Montessori School of Celebration coming over. We are going to set up “virtual school” (Thank you Apple and iChat!!) Noah was so happy!
Then, on the medical front, our doctor, Dr. Amy Smith, called with great news. She and Dr. Gajjar from St. Jude were discussing Noah, and he felt the same way as we do – that the “bad cells” are “taking their time” in disappearing. The only thing he added was “Have the tumor tested for c-myc - if it’s positive, it may truly be resistant and we would be in big, big trouble.” We got the test back today – It’s NEGATIVE!!!!! Thank you Lord!!!
Now, the Pièce de résistance -
My sweet son was honored by an amazing group of people tonight!! His counts were high enough for us to go and, as a family, and let him have his “ultimate” night!! (His words – not mine.) John, Paul, Heather, Gregg, Bil, Will, LaTanya, the 501st Legion … all of you! You have given a very stressed, always waiting for the next shoe to drop little boy his perfect night. The smiles are true and from his heart – and mine! He was overwhelmed! And he said “that was the greatest night… wow, Mom… wow, Mom… it was perfect! Those people are really great and they are so nice to like me that much. I really, really thank them.” Once at home he asked me to sit on the floor so he could “go over the night again in his head so he didn’t forget anything and can we go over it again tomorrow.” You all have given our son a memory that he will NEVER forget and one that will help him get through this time. Now instead of thinking of throwing-up, hospitals, bad cells and needles, he will think of tonight! Dennis and I cannot thank you enough. To see him smile and be a happy kid is the greatest gift in the world!!!
Happy St. Patrick’s Day and Beanacht de Agat (Gaelic for God Bless You)!!
My boys are home. We know our daughter again (after 3 weeks away.) This has been the first full week of our “new normal.” Noah is amazing! He is weak and nauseous, throwing up everyday, but in a way, back to his “normal” self – his “new normal” self. Bright, laughing, playing. It’s wonderful!
During my “blogging blackout” (sorry for that) I had a very dark time, that turned into light. In a way I feel that we are just sitting waiting for his MRI on March 30th. I’m not sure that we will really sleep until then. It’s a little like “we’ve been here before” even though I do know in my heart that the cells are going away. I’m just really scared and I’m praying for strength and for all of the cells to be gone. We can’t have another Feb. 12th. We can’t see the same MRI – again. I know God is in control, but this is a hard one. Noah is our light. That child is so brave and wonderful. As I have learned from so many of you who are praying for us, God and Noah’s story are changing people’s hearts in ways that I could not imagine. I have had people come and tell me that his story has changed the way they treat their children; his story has reunited sons and fathers; his story has brought people back to God and their faith. We have had so many people speak of the Angels they have seen and felt wrapping their wings around us (I have too.)
Thank you Dear Lord for all of the blessings. Thank you for all of the people praying for us. We pray for them. I know this is our journey with You. Thank You for letting Noah’s light be a mean’s of healing for others. Please continue to heal him and others. In Your Name we pray. Amen.