Noah…may the force be with you!

Ok, so planning is always out the window. We don’t know hour to hour, much less day by day. So we have to grab the moments as we can and on Friday night Maryellen and I made a plan to check with each other in morning, but tentatively take the boys to Star Wars Weekends. There are only a couple of days at the end of the month that Noah’s counts are high enough to do anything out side of our house. On Friday at clinic, I made them check him for bronchitis. No fever… no bronchitis… I’m making good memories for him.

Ok again… Don’t judge me… Despite a nose that is running like a faucet and a cough that could wake the dead, we went and what a great day!

Thanks to some “Hervat magic” (thank you, thank you), the boys got to walk in the parade, (well, half of it – Mommy had to run in with the stroller and Mommy cried the entire time – thank goodness for sunglasses!) They got to meet so many characters and the coup de gras: Noah got to meet Jeremy Bulloch, the actor who played Boba Fett in Star Wars movies!!! What a gracious, wonderful man! He let Noah ask all of his questions and he signed Noah’s hat! They spent at least 20 min together. It was magical! (Cue the Mommy tears again!) He was there because he is the host of the entire Star Wars Weekends! (Boba Fett is the theme!!! Noah’s favorite!!! Really crazy!!! – but AMAZING and I am so thankful!!!) Noah was floating!! The child that I mourn was back today! It couldn’t have been scripted better.

Here are some of the memories – enjoy and please pray for Tuesday – the MRI is at 7:30 am.

Yes… he wanted his hair spiked like Darth Maul… don’t judge … we are getting through the day!

When Noah would give himself a timeout for “thinking about having unacceptable behavior,” (yes… you read it right)… He would always say “Mom, I’m going to turn it around.” He would sit, do his “Yoga breathing”, and turn it around. So…I thought I might follow his lead.

Our life was not always like this and it will not stay like this. We have a great, very blessed life! Ok… right now is not so fun. I have to stop … put myself in timeout … and know it will be again. Each day that we are together is wonderful… trauma and all!

Enjoy some of the past fun! Pray for Tuesday!

So, I’m working late last night, (sorry I haven’t blogged in so long…it’s been hard to find something positive to say and I can’t stand so many downers – it’s been very hard lately) and Lulu starts crying. I go in and she is miserable. I thought “maybe she caught a cold.” She had a little fever, so I stopped working and crawled in bed with her. (She just got her “big girl bed” for starting to go potty in the potty – yes, even through cancer, you still have to potty train – not fair! She gets worse. Then, the flashback. She sits up in bed, grabs her head a starts screaming “Mommy, my head!!!! My head!!!! It hurts so bad!!!”   “What, baby girl??” She is screaming about the pain in her head…I’ve been here before…as a matter of fact… on Oct.29th. (What 2 year old does this???) I hold her…she tries to lay down and screams “my head!!!!!!”  We make it to the morning, and I call her pediatrician (Noah’s as well.) She says come as soon as you can. Lulu stands in the kitchen…seems better.  Then, grabs her head, once again “Mommy, my head!!!! We get in the car.

We get to the doctors office…I’m still together…praying like crazy. Normally, we sneak in the back door of the pediatrician’s office…as to not expose Noah to anything. This time, in the front door…there were no children in the waiting room, so we sat in the “Sick Child Area.” I explain that this is Noah’s sister…blah, blah, blah. Then Lulu jumps off my lap, grabs her head a screams “MY HEAD MOMMY!!!!!!” I grab her saying “Landin, Landin!!!” She stops  - stares at me and starts projectile vomiting all over the office. (Guess What… this exactly what Noah did in our kitchen.) I lost it!!!! We were covered …at least a 5ft radius pool!  I froze like a deer!!!! We are sopping wet and I’m in shock. I call Dennis and he bursts into tears at the flashback.

Now…the Doctor (whom we love) checks her for strep and everything. Tells me a stomach flu is going around and she will probably be throwing up all day. (She only did once…just like Noah… in the morning…text book.) Lulu’s tests are all negative. I am freaking out!!!

We go to Arnold Palmer for an MRI. Unbelievable de je vous!!!! Landin is talking about her eyes. “Mommy, my eyes are wiggly”… “Baby girl, what do you mean?”… “Mommy… my eyes are all wiggly” Dennis and I look at each other in the rear view mirror. (All, I can think about is Baby Charli.)  I call Dr. Smith (and poor Emily – relaying messages – I love you Emily – thank you!!!!) She tells me what to do. Dr. Levy is amazing – a wonderful man and doctor! Except… I told him I was sick of him meeting my children this way!! We wait for a “haste MRI” to see Lulu’s ventricles. (This is a non radiation MRI, that is really fast.) We go in at 12:30 and are there until 6:00.

We sit and wait. And wait. And wait. And wait. And wait. And wait. And wait. And wait. She is playing and is fine…just like Noah was.

As the nurse comes to get us for the MRI, my head is spinning. The same hallways, the same waiting room, then the same MRI room. We walk in. I can’t stop remembering. I lay my baby girl on the table, they strap her head in and we look at each other through “the mirror” (a rear view mirror that you can only see their eyes.) I stretch into the MRI machine, just like with Noah. Her eyes are flashing between Noah’s eyes… I have to keep smiling…just like I did with Noah… keep smiling, keep smiling, keep smiling,…my baby…my Noah..my Landin…everything’s ok. She is frozen still … just like Noah. I almost passed out. Satan…you are NOT TAKING MY CHILDREN!!!!!

We sit and wait. And wait. And wait. And wait. And wait. And wait. And wait. And wait. She plays. Just Like Noah.

Dennis and I are done. We tell the nurse “Go find someone!!!” The attending comes in… everything looks ok. Dennis and I almost pass out. Dr Smith still needs to see them, but so far so good. Again, we come home shaking after another de je vous day.

(We are still shaking.)

June 1st – Noah’s MRI. Please Pray!!!!

Dear Heavenly Father, please let this always remain negative. Please let us have another negative MRI on Tuesday; please remove a of the bad cells from Noah’s body, forever. Dear Lord, please forgive us for our sins and please help our family. We know that through You all things are possible. satan is always trying. he will not be let in nor be entertained for a moment. We are in Your hands Lord; You are in control. We ask these things in Jesus name, Amen.

It has been a BRUTAL week! Can’t even write about it yet – too drained!! He’s very sick, very weak and very sad… had to use a wheel chair on Friday. Too much for me to relive right now. Please read the side bar with Dennis’ tweets or follow him @NoahsDen – they give the details.

One highlight… (I have to post something good ) – Noah and I were sitting on the couch waiting for my email to come in and we made this – a little something funny for a horrible week.

Enjoy -

Please pray for my baby – June first is coming quickly!!!

These words sum up everything I feel. I know we are blessed, but I didn’t get to see him today. Dennis told me that he just threw up and tonight he wet his bed because of exhaustion . No child should have cancer! I hate this!!! Close your eyes and listen. Dear Lord take care of my son. My baby boy.

Amen.

My boys are “camping” in the hospital – Noah is such a champ. He called me tonight and decided he would pretend to be Dad. “Hi sweet cheeks! It’s the man you married, your love, you know Dennis.” “Hi sweetheart!” I replied. “So, how is our baby girl?” he said in his best deep voice “and how are you my sweetest love?” I was rather impressed and proud on his interpretation of Dennis speaking to me. Well, it is true that Dennis and I have NEVER had a cross word towards each other. (Be quiet Dennis… Quiet everyone from work! “Don’t forget to water my plants, my love Amber” … This went on for about 45 minutes – I was having a hard time keeping up! He was so cute!

If you are on “Twitter” than you already know some of the bad news. Noah has hearing loss. To the extent of reducing his chemo. My heart breaks for my baby boy! This morning he begged me to come to the hospital with him. His little eyes have no eyelashes, so his eyelids stick together as he blinks… and as the tears leak out. My sweet baby. Before we tucked him in last night, we had an anointment prayer. Dennis was raised Catholic and recited a beautiful blessing and ceremony as he anointed Noah’s head and spine with oil that our dear friends Mother brought back from Greece. (Thank you Manutes’ – you are also in our daily prayers!) It was really beautiful!

I have no idea how I will sleep tonight. I sleep with Noah EVERY night. We sleep head to head. His little velvet head buried in my nose and face. Tonight will be a long night.

There are blessings… those on Twitter also know that he weights 47 lbs and is officially 4 feet tall!! I have been praying for growth after the radiation. Thank you Dear Lord for all of our many, many blessings! Each day there are too many to count! I know you are in control – Thank you! Amen!

Good night!

Today we were blessed with an amazing gift and an amazing day! We were given a Disney VIP (which Noah changed to VIB) tour/playdate day. Noah got to spend the entire day, not only going to all of his favorite places at Disney without the lines, but experiencing it with his “wife” Dylan and her family! It was his perfect day! The day started a little slow. His friend Nate came to do the Jedi training with him and Noah backed out. But as you will see from the pictures, the day quickly got better and better! He had never seen the Indiana Jones stunt show, he had never been on Soarin’ – so many new memories!!!

He has been really sick from the medicine and this was just perfect! He goes back in on Tuesday for another round of chemo; he will be in the hospital until at least Friday. Please pray for him!! But let me assure you – today has given him strength!!!!!!

Thank you! Thank you! Thank you! Tracey, I will never be able to thank you enough for making this happen! Maybe I can repay you with “twitters”:-)