Noah…may the force be with you!

Ok… guess what the only smell is that Noah actually likes and the ONLY one that doesn’t make him nauseous? Bleach. Yes, like Clorox. So, when he is on the brink of sickness or right after, we spray Tilex on a paper towel and wave it or spray it in his toilet and let it permeate the room. I know… it’s crazy. I promise that I will not let him have more than a whiff  - I’m trying my best to protect his brain on all fronts – even against bleach fumes!

12 days. I can’t really get my head around how big a day that is. I know the tumor in his spine will be gone. It has to be. His MRI is at 11:00 am on Feb. 12th.

I also want to report more blessings and answered prayers – Noah weighs 41 lbs!!!!! That’s HUGE!!! He looks WONDERFUL!!!! He is still really thin, but nowhere near the emaciated pictures from before (at maybe 32 – 35 lbs.). And, Ariel and Jenette sit down – I wish this could have happened in Gainesville, his port accessing – it has gone from a 1 million, (on a scale of 1 to 10 – 10 being the worst) to about a 5. He has gotten so much better – and now it’s twice a week! “Porty” even talks to us now – he lifts his shirt and pretends it talks! “Porty” can babysit Landin and gives me  a kiss at night. (I have conversations with him too – and he really loves lullabies!) Hey… work with me… I will do anything at this point.

It’s a wonderful feeling – being wrapped in prayers! Thank you all! God’s plan is so mysterious in so many ways and yet so blatant! He lets us discover as we go and then some things… he drops right into our laps! It gives me chills when the puzzle pieces come together! (Thank you Jennifer A.!) Some taking years and some taking moments – even seconds! I am so glad to be experiencing His power and His will! Dear Lord – Thank you!

Please pray for Eunice Escobedo and Blake Appleton. Without telling too much because I don’t have permission, Eunice is a dear friend that is a mother of Noah’s classmate, battling the “c” word – notice, not capital – I won’t give it the respect!  She and Noah discovered this the same week. Guillermo is her amazing husband and she has 3 wonderful babies. Blake is a sweet boy from Lake Wales that my parents and many other “Lake Walesians” know. His parents are Jason & Miranda Appleton; his Grandparents are Dottie and Jack Cooper. Blake is 6 years old (I think) and is battling the same that Noah is. (Dennis met them in Gainesville and we saw them last week at Arnold Palmer). Pray for their entire families. We pray for you each night and I am doing something about this. This Pediatric Brain cancer serial killer doesn’t know who he is dealing with!!! It picked the wrong family and community!!!

I will soon be announcing some big news.

I deeply apologize for the big break – It won’t happen again!

Whew! For the most part, Noah is doing very well, other than ‘lots of nausea, throwing up and having to be the “boy in the bubble.”  We went back to the hospital on Monday and, of course, I had my list. We have been desperately trying to get his food and throwing up situation under control. Everyday, we keep a chart – feeding tube, throwing up, nausea, etc… And, unfortunately, his counts have plummeted to 490. From 624 to 1280 to 740 and now on Thursday – 490. Not good and not easy. They do tell me that his bone marrow is kicking in and I guess this is what it is supposed to do. Also, a really bad radiation burn has shown up on his lower back. They gave us cream for it and it looks much better. Dennis and I are taking these signs as blessings that his treatment is working and killing the “bad cells” as we call them. (Mommy barely uses the “C” word … I know…I’ll get there.) I just have a really hard time with the “after the fact.” What I mean is the whole cumulative thing. He didn’t get sick from the radiation and the chemo while it was happening, but now it’s giving him a run for his money. He is so brave. After a horrible, crying, throwing up episode, where Dennis has to push Noah’s feeding tube back down his throat and nose, Noah composes himself, gets cleaned up, comes out and says jokingly …”Side effect!”

He is aging by the day. His “crank up” freak outs have subsided – he now just tries to understand. Over the last two weeks, the questions have come. “Mom, when is all of this going to end? Why is this happening? What am I doing wrong? Nothing baby… I don’t know my sweetheart… You are doing great my darling… I love you Noah… It’s one of the worst parts – the helplessness.

Let’s see… what good things are happening. He has put together about 400,000 new lego sets (we are into Indiana Jones too – lego only, of course.) He is hooked to his feeding tube almost 14 hours a day, so we have to sit. And sit. And sit. And sit. And sit.

We have been doing some experiments – carnations in food coloring, freezing Han Solo, etc… He misses school so much and the really maddening part is that he is in the mindset to go to school. His energy level and his spirits are back to normal – just like before all this happened. His ANC counts – no way. If he gets sick, even a cold, he may not recover. UUUUGGGGGHHHH! So frustrating!!!! He is making Valentines for his class, well classes – both the green and the coral room.

Lulu is as silly as ever. I woke up to her singing “Twinkle, Twinkle underpants!” She is so funny. She is worried about Noah and has started biting her nails, but she is our comic relief. I have assigned her to Noah. He reads books to her (for quarters of course.) He is up to three dollars!

Home is hard, really hard. Today, Dennis and I worked on unpacking our suitcases from Gainesville – didn’t finish. Tomorrow – thank the Lord for new days. Thank you for your prayers. Feb. 12th is still a crucial day. His MRI, his new chemo begins. We are supposed to have a hearing test before that. Whew.

Here are a some pictures. Thank you God for all of our blessings!

ps. We are putting out a peanut butter squirrel trap tonight! We think she is the squatter! Noah and I have made a list of clues – 12 to be exact – we started with a rat and ended with a squirrel. “Scat”, habits, the FL gray squirrel has babies between Jan. – Feb…. and there is a crazed squirrel running all over our screen!

Philippians 4:13 -” I can do all things through Christ who strengthens me.”

Sorry I haven’t written in a couple of days. Now that we are home, Dennis and I are trying to slam out a ton of work – pulling all nighters – with and without Noah . We are so tired! I have really good news to report – I promise to write tomorrow!

To be continued… (My Mom can’t stand that on a show!!!!… Sorry Mommy Zaza – I love you!)

Ok – I’ll give you a little insight – we have good Noah numbers, a special nurse, someone took our saw, we have a crack in the roof and we have “something” living in our porch and our couch and our chairs! (It ate a HUGE hole in our screen – Dennis fixed it about an hour ago and now there is one above it!!!!) Yikes!

Coming home – always an adventure!

Today (Monday) was the first day of the four week break. Break to me is defined as no doctors, no needles. Not so much. We found out that it is a break from everyday chemo, even though we are now seeing the effects of the chemo. He throws up bile everyday at the same time and I can see the radiation burn dots on his lower back. We have to go to Arnold Palmer and have his blood tested. That means accessing his port now twice a week instead of once. That was the ONLY thing that Noah cared about in Gainesville. He became a champ at the chemo and the “Hannibal Lector” mask (still gives me nightmares.) When he has to accessed, it’s like he is having a panic attack and seizure at the same time. His eyes roll back in his head, the screaming, we all have to hold him down – it’s awful. We have tried everything.

His blood came back. He is neutropenic. Medical definition of the day:

Neutropenia (adjective neutropenic), from Latin prefix neutro- and Greek suffix -πενία (deficiency) is a hematological disorder characterized by an abnormally low number of neutrophils, the most important type of white blood cell, in the blood. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening.

His ANC number before we left Gainesville was something like 2400 ish. Now it is 624. Before, below 1500 he had to have a shots of G-CSF; now on shots. Here’s the breakdown -

• Mild neutropenia (1000 <= ANC < 1500) — minimal risk of infection
• Moderate neutropenia (500 <= ANC < 1000) — moderate risk of infection
• Severe neutropenia (ANC < 500) — severe risk of infection.

They said that he cannot be around anyone sick or around crowds. If he gets sick at this point, it would be hard to recover. So, no playdates. This is so not fun. They said his body and his bone marrow is working hard trying to re-coop.

He is in good spirits. Being home for him is great. We acted out “Villains” last night. He was “Color Villain” and used his color necklace that he made at school to defeat the good guys. White was ice, pink was bubble gum, green was mind control! He had them all! It was really fun – WONDERFUL seeing him use his imagination and smile! Thank you God for the bright moments!

Thank you for your prayers! Please pray for Feb. 12. That is his MRI to see if his treatment worked. Thank you!

I pray that none of you have run into this, but Dennis brought something to my attention tonight. He was looking through a bag of the bracelets and saw 2 that said “Support Make a Wish” and on the back “Chemo Sucks!” Ok, I will agree with the latter statement, but these are not Noah’s  - Please throw them away! I apologize if anyone has one of these and I have more. Thank you!

He had a WONDERFUL day and is making a “Playdate Calendar.” I told him “Noah, Mommy has to clean – No one is coming in this house! It’s really strange, this whole nightmare journey started 2 days before Halloween. Dennis and I had a party to go to and our costumes were in the bathroom – fake eyelashes, wigs laid out, etc… They still are. It looks exactly like that night. Time has frozen. When I look in there, for a second all of this feels like a dream, or something I made up in one of those “Mommy’s worst nightmare” thoughts. Our house frozen and more has piled on. At every turn, we basically just kept dumping everything in the house and running to the next “task” – the Arnold Palmer ICU stay, Gainesville, Thanksgiving, Gainesville, Christmas, Gainesville, New Year’s, Gainesville … it’s really weird. I am finishing the Christmas packing tonight and we are working on one room at a time. Noah and I are re-reading all of your cards, pictures and gifts. It seems like a lifetime ago! You are so wonderful! This is the first time that Noah is really getting to see the cards. (He doesn’t remember much of Arnold Palmer – only people touching him and IV’s.)

And then there’s the bathroom… neither of us can touch the bathroom.

Den’s “Terminator” mask may lay there forever!

I have no idea how you do what you do each day! (But I’m glad you do!!!) Thank you Dr. Smith, Ariel, Janette, Lakesha, Michelle, Jenna, Hillary, Melissa, Nikki, Dorothy, Suzanne, Mary, Yadi and last but not least … Lisa and Helen! (And everyone else!) Thank you for taking care of our son and sometimes me (Helen). God bless you all! Enjoy the photos – Noah is already asking when we will visit!

Noah has not had solid food in 6 weeks – 2 before the NG tube and 4 with it. Today he asked for tomatoes!!!! I know it sounds so silly – but it’s HUGE!!! (Thank you Suzanne!) His ANC numbers were in the 2000′s and it was a great day! Oh yes, I forgot… and he proposed to Lisa the radiation specialist! She made him swear that he would “kick all his other women to the curb!” (Yes, a great new saying that Noah knows now ) They are taking their honeymoon in Dubi (because Noah just found out that they opened the tallest building in the world there) and he wants to take Landin with them. Dennis and I agree that it is a fine idea!  Don’t worry Dylan and Riley – Noah says “Mom, I’m just tricking Lisa!”

I had a wonderful meeting last night about some of the leaps and bounds that are happening in Pediatric Cancer. I also had a reality check that In Florida, there are 721 children diagnosed with caner a year and 200 of those are brain tumors. Brain tumors are the #1 cause of death in children’s cancer and (as my knees buckled) are the #1 relapse cancer. I will have so much more information to share about this and I will need help. I heard a quote this morning that is my new mantra – “Don’t wait for a miracle – make one.” We can do that (with His help!) You will be excited! I also found out that during our “break” we will be in and out of Arnold Palmer/MD Anderson. (It’s only a break from chemo – surprise! ) I will be blogging everyday and will continue to need prayers! (I cannot wait to write the invite for all of you to his “Clean bill of health” Party!!!!!)

My dear friend Amy Reinbolt  (AKA Superwoman!) and her Minister wrote a beautiful prayer for Noah. It’s tri-fold business card size so it could easily fit into a wallet or pocket. My office is going to print some out if anyone would like one please let me know. I will print as many as we need. I will upload a printable one that is higher quality, but this is what it will look like.

Here is the pdf high res one:

files.me.com/nth2go/025zrc

Thank you!

We are in our last week in Gainesville! I can’t believe it. Noah feels it too. He had a great day. Noah wanted the USA Today newspaper to see the weather page. He then takes my phone and types in the names of the coldest places to find the “negatives.” (He also put Moscow in because he was sure that was cold.) He is starting to feel like “Noah” again. This weekend he said “Mom stand up,” so I did. He grabbed my hands and said let me teach you how to salsa! “Here we go Mom, three steps back, three steps forward, I’ll lead”  -  so we “Salsaed!” He said, “This is how you and Dad should dance!” Then he grabbed behind my knee to dip me – It was so cute! (I could make everyone cry and post the video – Dad secretly taped it.) He feels your prayers… We feel your prayers!!!! When we read the comments on the blog, it’s like you are in the room with us. The support keeps us going! I looked tonight and got so overwhelmed that over 900 people visited today. The power of that is amazing! Thank you. I owe so many “thank yous” to so many people. (That weighs very heavy on my heart!) Your visits and comments mean the world – support, information, a fresh point of view. Thank you!

I think we drove north! Icicles on palm trees – really! Yes, our Christmas is still up.

We played and did nothing together  It was great! And, of course, Lulu (Landin) comic relief! Notice Lulu’s toes in the pics – we were wondering where her sticks and marbles were going. Silly girl!