To say that we are thrilled beyond belief that Jack’s scans came back all clear is an understatement.  This time was one of the scariest times I have personally ever had with Jack in regards to scans.  Every other scan I had the belief that he was going to be fine because he was doing so well.  This time I saw something that was was out of the ordinary and it scared me.  My mind went places that I never want it to go again.  I went for a walk the night before the first set of scans by myself and the tears were coming down like they did when Jack as first diagnosed.  I kept thinking to myself that I cannot lose him.  I physically could not live without him and the fear of that happening was overwhelming.

Zac is working out of town right now and with the scans being scheduled so quickly and with my Dad being able to fly out to be with me at the hospital, we decided to at least wait until the CT scan before making a flight for him.  We agreed that if there was something on the CT, he would come home immediately.  It was hard not having him here because I am the emotional one (go figure) and he is the rock.  When he is gone, I take over his role with the boys and it’s hard to be a rock when you feel like you are a pile of mush.  We kept in constant contact with Zac so he knew what was happening at every moment and that helped.  I know it’s very hard for him to be gone all the time and especially when we are going through something so hard and he is far away but I also know how hard he works for our family and I love and respect him for that very much.

When we got the first call from Sharon at the hospital that the CT was all clear, it was a huge relief.  We knew that we still had the MIBG ahead of us, but to know there wasn’t a mass in his brain was huge for us.  It made it a bit easier walking in to the second day of scans.  Dr Maze wasn’t able to be there for Jack’s anesthesia due to him being out of town, but he called and told us that he would pick someone he knew we would love and he did a great job.  We had Dr Miller and he was amazing.  We had him once before and I remembered him because he was from Michigan and I was secretly hoping we would have him again.  We walked in the second day and our favorite Nuc Med nurse Angela was Jack’s nurse and all the pieces started to fall together.  We had Angela, Dr Miller, and of course the Amazing Mary and Shannon.  It was the 11th of October and his scans was at 11:00…all the signs were there for Jack to have another set of clear scans, and he did.

Sharon called us Friday at 7:49 AM and told us to start celebrating.  I asked her what she thought the shaking of the hand was for and she said it was hard to say.  It could be a late effect from treatment, it could have been a nerve problem, it could have been a fluke.  It hasn’t happened again and they aren’t worried about it so we aren’t worrying about it.

We have had a busy couple of days and Jack is getting ready to go back to school tomorrow after his 2 1/2 week break.  He is excited to see his friends and I am excited to be able to put this behind us for another 6 months.  We will chat with Dr Eshun when he gets back in town in a week or so and I am sure he will have more information to tell us but for now we are just loving the fact that Jack is doing so well and we are so very happy.

I cannot thank you all enough for all of the love and support you have given us.  My phone would start going off at 5:15 AM and continue until 1:00AM every day until we knew the scans were clear.  Thank you for all of the messages you sent.  Thank you for all the positive thoughts and prayers and words of encouragement.  Thank you for calling, writing emails, texting…thank you for it all.  Thank you to my friends who let me cry and who also told me in the nicest ways to knock it off and get my mind back on track when I needed it.  Thank you for making me laugh and thank you for repeating over and over again how far Jack has come and that no matter what the scans read, he would get through it.  Love you all.

Here’s  a few pics of the scan days….

Jack telling cancer to take a hike…

A very unhappy boy getting poked for the 3rd time…I felt so bad for him!

Uncle Scott came down to say hi but Jack was still not too happy about anything at the moment…

CT time.  Of course he was watching Mario and Luigi the entire time…

Of course Aunt Nik met us at PCH too!

Before we left for day 2…

Day 2…just got the call from Sharon that the CT was clear!

We took a real quick pic and I am sure Mary is going to love that her eyes were closed, but I wanted to show some of the amazing people from Nuc Med!

Dr Miller was so good with Jack.  He talked to him the entire time while he fell asleep.  He held him and hugged him….he was wonderful.

Jack sleeping after scans…we had to do some more labs after but thankfully he was sleeping so he didn’t even know.

Celebrating at home!  I asked Jack how he felt about having clear scans again and still having “no cancer” and he said, “It’s feels good…actually, it feels amazing.”

Seriously…we will never have a pic of us sitting still and smiling!

Day after results…soccer time.  I couldn’t have been happier to have him running up to me with this smile.

Just a quick update…

When we got to the hospital today we got a call from Sharon letting us know that Jack’s CT was totally clear and normal!  His head, neck, abdomen, chest, and pelvis were all scanned and they were all clear.  Perfect news!

Jack headed back to get his MIBG around 11 and it only took about a hour which is good.  We went back to go see him in recovery and he woke up well after having to get some additional labs that weren’t done while he was asleep.  Dr Maze is out of town so we had a different anesthesiologist and we loved him.  He is amazing and so good with Jack so we couldn’t have been happier.  We got to see the amazing team that is in Nuclear Med as well as our favorite nurse in that department, Angela.  It was all around a good day.  Jack woke up, had his juice and popsicle and then told us he wanted to get out of there so we did.  With a quick stop at Toys R Us and then In and Out Burger (both his requests) we are now home and patiently (Haha!) waiting to hear the results from today’s scan.  I doubt we will hear today but you never know!

Keep the prayers coming!  NED!!

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.

Well it’s after 9:00 PM so obviously we won’t be hearing from Dr Eshun tonight….ughh.

Jack did really well today though so that’s a plus!  We arrived at PCH on time and all went really smooth.  We were really happy to see our favorite nucular med nurse, Angela, there and then to know that she would be taking care of Jack while he was under was an extra bonus!  We got to see the Amazing Mary and the rest of the nucular med team and that’s something we actually really enjoy.  The people that are down in this department are really top notch.  We really love them all and consider them part of our family so it is always nice to see them.  Dr Maze arrived and after chatting with him for a bit we got the show on the road.  Jack did well with the mask and went right to sleep.  Almost exactly 1 1/2 hours later, Dr Maze came out and said, “Well do you plan on coming back and seeing him or just sitting in this waiting room all day.”  Typical Dr Maze…love him.  He said Jack did well despite his cold and that was proven when he woke up within 5 minutes of my Dad and I being back there.  Usually he snoozes for a bit, but not this time!  He was up very fast, had his purple popsicle, apple juice, and grabbed his gold fish for the road and we were off.  By the time we got home, he was running around like a crazy man and ate a wonderful dinner so it seems like he is getting back to his old self already.

We are sitting and waiting now for Dr Eshun to call to give us final results but we feel pretty good about it this time.  I am nervous as all get out, but I feel good.

Tomorrow my Dad and I are taking Jack to see a new endocrinologist.  I didn’t get the best “vibe” from his last doctor so we decided to make a change.  We will meet the new doc tomorrow and see what he thinks about Jack’s thyroid and were we need to go from here.  Hopefully we will hear from Eshun tomorrow but we may not until we see him Friday morning.  We will keep you in the loop as we get the news.

I am attaching some pics from the last couple of days…some are of Jack falling asleep at scans so I just wanted to give you the heads up about that.  He is always safe with Dr Maze and that is why we feel comfortable showing pics of him being put under.

I also want to take a second to say thank you to all of you….old friends, new friends, some we have never met for all of your encouraging words of the last week.  I have recieved so many wonderful texts, emails, Facebook posts, Twitter messages…it is all just so comforting.  Thank you from the bottom of my heart…

Day 1…CT Scan…

Day 2…reading before Dr Maze arrives…

and here he is…cracking jokes as usual!

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…