Everything was going great today…Jack woke up without having a fever and slept very well last night.  He ate well today, had energy, and never spiked a fever…until late tonight.  He threw up after dinner and up popped a fever of 101.5.  He is now sleeping next to me and his fever has gone down to 100.5 without medication…and this is a good thing.  The spike in the fever could be due to a million things…he got sick to his stomach, he was eating, it’s night time, he still has a head cold and cough…there is a million different reasons why this is happening but I am going to need to figure out why so we are heading to PCH tomorrow.  We will be getting a CBC as well as a blood panel done.  I may, and truly hope with all that is in me, that I am overreacting and that he just has a virus but I can’t go in to another day with the wonder of what in the hell is going on in his little body.  Something is off…it cold be the cold, but something isn’t ok.  I want nothing more than to be the crazy mom who worries far too much and have everything be ok with Jack.

I told a friend today that I saw this quote and it’s so very true:

“There are moments which mark your life.  Moments when you realize nothing will ever be the same and time is divided into two parts, before this, and after this.”

This is very true.  The moment Jack was diagnosed, my entire world was changed forever.  The way I act, think, react, feel, love, rationalize, the way I appreciate the little things (and the big things), the mission I have in life, the drive I have…everything has changed.   It took a moment.  A single moment to redirect my entire life….not only mine, but my families and many of my friends.  Things change and one of the small things that changed is the way I look at illness with my kids.  It freaks me out.  Freaks the living crap out of me.  It may not be what is “normal” but it is what is our life now and what it probably will be until my kids are grown men and have kids of their own.  I feel sorry for their future wives…I am on record now saying that I am sorry but I will be “that” mother-in-law.  My kids are my life…they are Zac’s life…we couldn’t live without them.

So, please….send your prayers, positive thoughts, energy, fairies, spells…whatever you wish…send all the good thoughts towards Jack.  Hopefully this is just a funky virus that he is having  hard time shaking.  Whatever it is, we will figure it out and we will get rid of it.  It’s what he does…it’s Jack.

Monday night Nikki and I met up with the rest of the “Children’s Fight for Life” committee to present the check to the Center for Cancer and Blood Disorders at PCH and it was amazing!  Here’s the check:

Can you see that…??? $100,300!!  How amazing in that?!  Everyone was so happy to see the large amount on the check and all of those at the Center were more than thankful.  It really feels so good to be able to give that amount of money to the clinic since this place was our second home for so very long.  The clinic is filled with honest love and there is nothing better than that.  Of course, the slew of treatment that Jack went through also has to do with his amazing outcome, but we wouldn’t have been able to get through it without these people.

My friend, Angie, owns Yogurtology at Arrowhead (20241 N.67th Ave Ste A-7, Glendale, Arizona) and she announced today that she will be selling Jack’s “Stronger Than Cancer” shirts at her store and every time you wear your new shirt in to get yogurt, you get 20% off!  So if you live in the Glendale area…head over to Yogurtology and get your shirt, have a tasty treat, and give Angie a hug and tell her how amazing she is for all she does for her community.  She really is amazing!

So I was running around this morning with Braden trying to get some last minute Christmas things done.  I have been so busy lately and have had so much on my mind that I haven’t stopped to enjoy the little things…like running errands with just Braden and being able to soak up that time with him while I can.  We were at Target and I was getting a few gifts for the kids and was in the game aisle.  Another mom and dad were in the same row looking at something for their daughter.  The dad picked up a game and goes, “Oh, I bet she will like this one!” The mom replied, “I am sure she will, but are you ACTUALLY going to PLAY it with her?  That’s the real question.”  Dad says, “Well it’s only for 2 players so it could only take, what, 10 minutes to play?” Mom, “Probably.”  Dad, “Well then I can handle that.”  Are you flipping kidding me?!  I wanted to bonk their two heads together and ask them what their problem was!  How could you say something like that??  How could you NOT want to spend that time playing a game with your daughter?  A little peeved with their conversation, I took a deep breath, kissed Braden on the head, told him I loved him, and accidentally elbowed the dad on the way out. (Not really, but I should have.)

We walked in to Barnes and Noble and I instantly felt better.  There is something about a book store…I could have stayed in there for hours.  Now Braden, he isn’t as big of a fan as I am!  If you know him at all, he talks a lot…and he talks very loud, so a bookstore isn’t the best place for him but we still managed to get a few things accomplished while we were there.  Like I said, my mind, as well as most of ours this time of the year, has been all over the place.  I was going through a big checklist in my head while I was driving home, Braden was pretending to be a choo-choo train (loudly!) when all of the sudden, the song “Ronan” by Taylor Swift came on the radio.  I have never heard it on the radio before and have only listented to it once with Jack since we heard it and downloaded it  at the Stand Up to Cancer event.  I instantly got the chills and then noticed that Braden was totally silent.  He sat there and said, “Wisten Mom” with his little hand up to his ear.  We sat in silent for the couple of minutes that the song played as I drove and as tears streamed down my face.  That song is so powerful and even more so since we knew Ronan and Maya while he was being treated at PCH.  I “wistened” to the song and can only imagine how Ronan’s family feels every day, but especially around the holidays.  The song was over and Braden went back to acting like a train and I started thinking about all the things that I am so thankful for and that I don’t even realize…like Braden’s choo choo sound.  It’s loud.  It’s more like a high pitch scream rather than an actual “choo choo” and I will admit that there are times when I am driving and totally tune it out (it’s what mom’s do!).  I started thinking of where I would be if I could never hear that noise again or how I would be if I never heard Jack say, “Well actually Mom…I was going to remind that you are wrong.” or hear the little cough on the monitor in the middle of the night that woke me up just as I feel asleep and left me lying awake for hours.  All of these little things that are actually the big things in life.  The little things are what we need to listen to, remember, write down, record so you always have them.  We need to take time during this time of year, and really all year, to take a deep breath and “wisten” to what’s going on around you and embrace it.  We are lucky.  We are so lucky to have both of our boys here with us.

I started this post yesterday and didn’t finish it.  Today, a horrific act of violance was committed at Sandy Hook Elementary in Conneticut.  A man is responsible for killing 20 children and 6 adults, which includes his mother.  This is something that will never be explained or justified.  These little, innocent, beautiful children were robbed of their lives and their families will somehow have to learn to live without them.  I cannot imagine what the pain is like for them.  I cannot imagine what it was like in that school and what the children who survived actually witnessed.  I wanted nothing more to run to Jack’s school today and pull him out of school early but I fought it with everything in me.  Instead I arrived at his school a bit earlier than normal and waited to see his famous bright neon green Vans backpack come through the door.  I have laughed with other parents and teachers that we can literally see his backpack from a mile away and today I was so thankful for that.  I couldn’t even see his body, but I saw his bag and I have never been so relieved.

Like I was originally posting yesterday, try and take time to soak up your days.  Soak up the moments that will soon be just memories.  Learn to laugh more, love harder, live better, play more, leave the electronics alone for a bit and pay attention to what is really happening around you.  You never know when life will change…through cancer or a sudden tragedy.

Our thoughts and prayers go out to all of those effected by today’s horrific event.

The past 5 months have flown by and we got the call today to schedule Jack for his scans next month.  It will have been 6 months since his last scan and that seams like an eternity.  After my meeting at PCH the other day, Dr Eshun called and told me that he was sending in the scan requests and he wanted to talk about them.  The protocol that Jack is on only calls for a CT scan of his original tumor site for his year and a half post treatment scan and also for his 2 year scans that will be in May.  It does not call for a MIBG scan…the scan of his entire body that makes any active Neuroblastoma light up.  This scan is the scan that we really depend on so to hear Dr Eshun say that we really aren’t supposed to get it made me feel a big uneasy.  I told him I wasn’t comfortable with that and he said he knew I wouldn’t be.  He agreed that we should do the MIBG this time with the CT and then maybe just do the CT for his 2 year with no MIBG so that is what we are doing.  He also shared the news with us that after his 2 year scan in May, Jack is done with scans unless he starts showing symptoms.  Done with scans.  Oh boy…

I know there will be a time when we would have to come to grips with the fact that Jack will not be getting scans but I am not ready yet.  I have said many times over that if I could have a scan machine in my house, and there was no damaging radiation given off form the scans, I would scan him every morning and every night.  Scans give you the security you need.  Scans keep your hope up because you can physically touch them and see that there is no cancer.  I like facts.  I like to have proven eveidence in front of me so I can really believe it.  I live off of hope, faith, love, prayer…but there is nothing better than evidence in hand.

So now it begins.  Scanxiety.  The constant fear of “what if’s” start flooding in.  The sleepless nights, the nightmares when you do fall asleep, the sudden need to sit in the shower and cry so no one knows you are doing so, the panic….it all starts happening now and will continue until we get that call and hear Dr Eshuns’ voice saying, “I’ve got good news for you!” followed by a small laugh when he asks, “What are you worried about…it’s Jack!”  Believe me, he knows we worry and he worries to.  Can you imagine what it feels like for him every time a patient is up for scans?  He worries like we do…another reason why he’s a great doctor.

Don’t get me wrong…we are staying positive.  Jack is doing so well and we believe his scans will be clear.  They have to be.  So keep Jack in your thoughts and prayers over the next month.  His scans will be November 6th and 7th with our appointment with Dr Eshun on the 8th.

3 days until Jack turns 5!

7 days until scans start…

10 more days until we meet with Dr Eshun to go over results (but hopefully he will call us sooner than that!)

That day is my birthday as well and the only thing I want this year, and every year for that matter, is for Jack to be cancer free and for my family to be able to all celebrate together.  Jack’s annual scans will always fall on the 15th-18th, right after mother’s day, his birthday, and on my birthday.  Dr Eshun asked us back in the beginning if we wanted to change the date so it didn’t fall on my birthday but I told him I would rather know that I am getting the best gift imaginable every year than anything else so let’s keep it the same.

We are looking forward to celebrating Jack’s birthday this weekend…it is hard to believe he is going to be 5!  I have heard this song that I am attaching many times and I think of so many different things when I hear it.  Something that always runs through my head is Jack and all of the kids who have gone through the awful treatment that goes with being diagnosed with cancer.  I, of course in my best voice ever which happens to sound exactly like Pink, sing this song very loud in my car and I change the word “us” to “you” thinking of Jack.  I have put the words below for those who really haven’t listened to this song before….

Keep the positive thoughts and prayers coming for Jack and his little body to remain NED!!!

When I look into your eyes
It’s like watching the night sky
Or a beautiful sunrise
Well there’s so much they hold
And just like them old stars
I see that you’ve come so far
To be right where you are
How old is your soul?

I won’t give up on you
Even if the skies get rough
I’m giving you all my love
I’m still looking up

And when you’re needing your space
To do some navigating
I’ll be here patiently waiting
To see what you find

‘Cause even the stars they burn
Some even fall to the earth
We’ve got a lot to learn
God knows you’re worth it
No, I won’t give up

I don’t wanna be someone who walks away so easily
I’m here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use the tools and gifts
We got yeah we got a lot at stake
And in the end,
You’re still my friend at least we didn’t tend
For us to work we didn’t break, we didn’t burn
We had to learn, how to bend without the world caving in
I had to learn what I got, and what I’m not
And who I am

I won’t give up on you
Even if the skies get rough
I’m giving you all my love
I’m still looking up
I’m still looking up

I won’t give up on you
God knows you’re tough, he knows
We got a lot to learn
God knows we’re worth it

I won’t give up on you
Even if the skies get rough
I’m giving you all my love
I’m still looking up…

Just a heads up…I have been writing this randomly over the past few days so I apologize for the sudden change of thoughts and up and downs!!

Usually when  you are in the last trimester of pregnancy, you start cleaning, making plans, cooking extra meals, organizing, getting things done, coming up with new great ideas….this is what I am doing, except the small fact that I am not in my last trimester, or even pregnant for that matter, but what we are doing is coming up on the 1 year post treatment scans for Jack.  I decided the other day that I cannot just do my normal daily activities becasue I am going totally crazy with so many thoughts running through my head.  I have started cleaning up more than usual and trying to get things organized better.  I am planning activities for us to do that we would never usually do.  I am planning a vacation so we can celebrate the clear scans that Jack will have.  I am getting things done that I probably should have gotten done a long time ago.  I decided that I am totally nesting and it’s really odd.

I figure if we have plans, then we have to do them and nothing will change that.  I am a person that does not like change so if I set things in stone, they won’t be changed.  I am extremely nervous about Jack’s scans this time.  I believe in my heart that he will be fine and that we will be getting that phone call from Dr Eshun that we wait on pins and needles for when he says, “I have good news for you!” which is followed by, “What were you worried about?!  It’s Jack!” and then a small laugh because he knows I am the Queen of Worry especially when it comes to my kids.

We knew when Jack was diagnosed that it would not be an uphill battle, but a total roller coaster.  One that makes you sick every now and then from your stomach falling to the floor and one that makes you scream with joy when you learn you made it through the dips and turns.  This ride is one that I really want to get off of but I don’t see that happening anytime soon.  I know some people think that since it has been a year from the end of Jack’s  treatment that it should be getting easier and I should just realize he is a “normal” kid now, but that’s not how it works.  I decided not to research as much about Neuroblastoma when jack was going through treatment because when I did, I wanted to grab my kids and my family and go away to another land where this didn’t exist.  Now that Jack went though the treatment and I read more and more about this awful Monster, I feel better that I know more and feel educated on it but it also freaks you out when it comes to scan time.

I had someone say to me after asking how Jack was doing and I said that he was doing really well, they said, “Well, you don’t have anything to worry about anymore, right?  He did his treatment and he’s fine now so that’s good.”  I kindly reminded them that unfortunately it isn’t that easy with Neuroblastoma or any cancer really.   You can move on with your life and move forward, but it’s not over.  You do have to worry about relapse and late side effects from the chemo and radiation.  You do have to worry about pains and problems that you encounter for years after treatment.  You do have to worry about having their immune system totally and completely wiped out and to have to basically start over with all colds and flues and how easy they can become something else.  I am not being a Debbie Downer or a total pessimist at all, in fact, I am being a realist.  I don’t believe it until I see it.  I don’t trust it until it’s proven.

I spoke with another Neurblastoma mom today and we both openly admit that our brains will never be the same after watching your child go through cancer.  There is not a “to do” that can be remembered, it all has to be written down.  Then we lose the list that we made and have to make a new one and forget half of what was on the list to begin with.  We think everything that is wrong, MUST be cancer.  I had a spot on my back that looked a little red…I made phone calls to friends to find the nearest dermatologist and off I went.  I thought for sure I had skin cancer.  He looked at my back and said, “Put a little lotion on it. It is a small dry spot.”  Oh.  Ok.  I knew that.  It makes you feel totally and completely crazy.

I have totally rambled on about all of the things that I am thinking now and should probably start to finish this post up and will do that with updates on the boys.  Braden is doing great…talking more and more each day and just growing into a little man and leaving his baby stage behind.  Last Friday I woke up to him chatting in his bed and he was yelling, “Party, Party, Party!”  I know that we will have our work cut our for us when he is older!  Jack is doing well and feeling great.  He gave us another little nervous scare last week because he was complaining about his neck bothering him.  Of course it was in the same spot that he had his biopsy from so it made us pretty anxious.  I talked with Dr Eshun and Sharon on Monday and they didn’t agree to getting a CT done sooner than scheduled.  They said that if it wasn’t swollen, then not to worry…so we stuck with that and he seems to be just fine.  No complaints.  We found out today that he got in to the school that we wanted him to get in to so he stars Kindergarten in July and we are so excited!!!  9 days until his birthday and 14 days until Jack’s MIBG scan…I would tell you the minutes and seconds that we have left as well but that would be all to much, right?!

Thank you for your continued support and please send out your positive thoughts and prayers for our boy!!!!