Well we got a little more information from Jack’s surgeon last night about his biopsy tomorrow morning.  First, it is scheduled for 8:00 AM so we need all those prayers and positive thoughts first thing in the morning! Second, we will be at the hospital a bit longer than we thought.  He feels very confident that he can go in and get this small “mass” (I really hate that word so we need to come up with something different for it) with a scope instead of fully opening him which is great.  He is also very confident that he can get the entire things without putting him in any danger.  It is on his right side and behind his heart a little bit.  This surgeon is the same one who put in Jack’s broviac, did his tumor resection, and took his broviac out and he really is amazing.  We have felt very comfortable since the moment we met him back in 2010.  I asked him if he remembered us and he said, “I remember everything about Jack and your family.  I know how hard it was on you all in the beginning.  I remember it all.”  We talked about doing a freeze biopsy and that is where they take a tiny portion of the “mass” (again…that word) and see if it’s cancer right then and there.  I told him we didn’t want to know the results about it because of what happened when Jack was first sick and he said, “I remember…that man who did the surgery on his neck biopsy came out and told you it wasn’t cancer and then you were blindsided a few days later after they did a biopsy on the entire section.  We won’t do that to you.”  He said we should know the results by Friday afternoon.  I asked him what he thought it was and he said he didn’t know.  It could be new disease but it could  very well be an infection.  He asked if Jack had been sick lately and I told him about Jack’s crazy virus he had a few weeks ago and that very well could be from that so that’s what we are hoping for.

Jack will have to have a chest tube put in place so that will not come out until Friday afternoon.  He thinks we will have to stay at the hospital until Sunday.  Jack had a bit of a breakdown before he went to bed last night (he slept with us again) and I felt so awful for him.  He kept saying that it’s going to be the worst day ever and he knows it will hurt and he doesn’t want to go.  This all started when he asked what day it was…I told him it was Tuesday and he said, “Do you know what that means?!  That means only a few more days until we get to go over to Rafe’s house and play after baseball!!”  Rafe is his buddy from school and they play on the same baseball team.  We had made plans to go over and swim and hang out for the afternoon with him and his family and Jack was looking forward to that so much.  I had to tell him we won’t be able to do that and the breakdown began.

This is where the feeling of anger comes in.  It really makes me (and the rest of our family) so angry that this is even happening to him.  It’s just not fair.  He has been through enough and it just makes us literally sick that we have to watch him continue to prove that he can overcome anything.  We don’t want to be tested anymore.  We have been tested enough and this kid passed with flying colors.

I fell asleep last night around 11 and woke up at 1 AM and for one second I forgot about all of this and then I realized that we are checking in today and I wanted to throw up.  I was awake most of the night listening to Jack breathe and just watching him.  I would turn on my phone so I could use the light to see his little face.  There are so many emotions running through my mind right now that it’s hard to even collect my thoughts.  I am angry he has to go through another surgery.  I am angry at the possibility that this devil of a beast might be back.  I am scared to death of what the results will be.  I am hopeful that it’s just an infection.  I am confident that Jack will overcome any roadblock that comes his way.  I am sad that he is so upset.  I feel awful because, as a mother, I feel like I should have been more prepared for this.  I am humbled by all of the support, love, and prayers that are coming Jack’s way.  I am at ease with leaving Braden while we check in because I know he will be taken care of by my family and friends.  I am all over the place.  Zac is truly being the rock in this situation.  If it weren’t for his attitude, I would be even more of an emotional wreck.

I am nervous to walk on the the oncology floor today.  We haven’t been back to that floor and I am nervous to do it.  I hope we get to see some of the same nurses and PCT’s that took care of Jack before.  We have been seeing a lot of them over the past couple days at the hospital and they are so amazing.

Thank you to all of you for sending your love and prayers to Jack.  Please keep them coming.  We have people from all over the world pulling for him and we really need that to continue.  We will keep you all updated as we go.

Here is a picture that was posted yesterday that Rafe and his family did for Jack….he was so excited when he saw this!

I can hardly believe our 2nd Annual Comedians for a Cure event is only 4 days away!  We are so excited!  I cannot tell  you how thrilled we are with all the support we have received from AZ news and radio!  We are so thankful that so many want to do all they can to help promote our event and make it so successful!

Tomorrow, Boomer Nichols (our MC of the event) will be on 101.5 FM with Luis Gonzalez at 4:00 PM!  Be sure to tune in and listen!!

Yesterday we taped a segment that will air on EVB Live (channel 12) on Friday between the 4-5:00 PM hour.  They will air the segment on Jack and our family followed by one of our amazing comedians, Jill Bryan going on live!

Saturday Luis, Jack, Boomer, and myself will be going on News channel 15 at 8:30 AM and then heading over to Good Morning AZ (channel 3) at 9:40 AM!  We have a jam packed schedule and we couldn’t be happier about it.

This whole week 104.7FM and XTRA 910 AM sports radio have been promoting the event and hosting contests to give away a few sets of tickets.

Don’t forget to click on the link about to purchase your tickets…I promise you don’t want to pass up on this night!  We are through the roof excited about it!

If you can’t make it and still want to help, be sure to text “HAND” to 50555 and a $5 donation will be added to your phone bill in support of our night.

ALL proceeds will be going directly to PCH for Neuroblastoma research!  Please help us make this year beyond amazing!!

It has been so long since I have done an update so this may end up being a long one!  We have had a very busy few weeks around here, as I am sure you all have!

The cold/flu bug hit our house the week before Christmas with Braden and has slowly made it’s way through our house.  I ended up with it on Christmas Eve and I was so bummed.  I have not been sick since Jack was in infant so for me to be sick, was honestly a shock for everyone!  We had our annual Christmas Eve dinner at our house with family and friends and I was stuck up in my room listing to everyone else have a good time.  Yes, I threw myself a tad of a pity party…especially when Jack started singing Christmas songs.  Naturally, I cried.  I was glad to hear them all having fun and after everyone left I made my way downstairs to keep up with the tradition of leaving reindeer food in the front yard for Rudolf and his friends as well as leaving a note and cookies for Santa.  Let’s not forget that Jack wanted me to make a scarf for Luigi the elf to take home, so we did that too really quick before I slipped back upstairs while  Zac and the rest of my family set up for Christmas morning.  I guess that is the good thing about being sick over the holidays…everyone is there to help!

Since I had to much time to myself, I found myself looking back at pictures and posts over the past couple of years.  2 years ago we were celebrating Jack’s 100 day post transplant.  Some of you may not realize what a big event that was…we were able to go outside again without wearing a mask.  Jack was able to leave the the house…period.  He could go to the grocery store, the park, a friends house, a restaurant.  My parents were able to stop flying here from CA with masks on the plane.  We could let up a tad on the extensive cleaning we did on a daily basis and we started to allow visitors in our house instead of having them sit at our entry way while we visited.  Literally…I had friends sit on the ground, outside of the front door while I sat inside on the tile and chatted just to keep extra germs out of hour house.  We were also able to celebrate with Jack’s helicopter ride with Bruce Haffner…what a way to celebrate such a big accomplishment!!!  We are still so very thankful for that!!

This year we were celebrating Jack’s 748th day post treatment.  My gosh how time flies!  Now he does everything “normal”.  In fact, he was one of the only ones out of all of us to not catch this awful cold.  Go figure!!

Zac and I were able to attend a comedy event on the 29th that benefitted Sandy Hook and that went really well.  It was so nice to be able to do something to give back to a community that was so devastated.   We are still working on our 26 acts of kindness but so far we have bought coffee for people at Starbucks, brought baked good to the baristas, left goods for our mail lady, adopted a US Solider, gave an Albertons gift card to a family in need, gave a Honeybaked Ham gift certifcate to our favorite grocery clerk at Bashas, gave goods to our crossing guard since she keeps us safe, Zac gave money to a homeless man in need, and we still have blankets to donate to the local family shelter, goods for the local fireman, and so much more.  I can’t tell you how good it feels to give back to so many.  We think there are things you can do every single day as “acts of kindness” but to do things specifically in honor of those killed at Sandy Hook…it takes on an entirely different meaning.

We are finalizing our next event, Comedians for a Cure, which will be on March 10th at Stand Up Live and we are so excited about it!  We expect this year to be bigger and better than last year and with your help, we can make that happen!  Mark your calendars now and please save the date and get a sitter!!

Last thing…we are putting in our 3rd “Stronger Than Cancer” t-shirt order this week!!  How exciting is that!?!  If you want to be included in the order, please email me at lmorton@thejackmortonfoundation.org.  We are also selling long sleeve shirts for $25…they are my favorite!!!

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.

First off, the pee sample transfer was a success.  Scott joined me on my adventure to drop Jack off at school, get a sample in the parking lot (without the other parents thinking I was a total freak), and then taking it to PCH Mesa on ice.  Fun times.  Jack didn’t want to pee so that made it a bit difficult, but he did, barely.  Jack want off to school and we made our way to PCH.  I met the nurse that Dr Eshun would only allow me to hand the sample to, Sasha, and she confirmed that it would take about a week to get result.  Ugghhh.  Funny how totally nervous a VOLUNTARY urine sample test can make you.  Really, a week?  Do they not know I am totally neurotic and want to know results NOW?  Zac is always very confident with all of Jack’s tests and scans and that makes me feel better, but there is always a “what if” in the back of my mind.  Looking forward to Ehsun calling this week!

That was Thursday….Friday came and hit me as if I was punched in the stomach.  This happens every now an then.  All of the emotions from the past couple of years come flooding in and are pretty much uncontrollable.  I woke up and my first reaction was, “Cancer.  Really?  Did Jack really have cancer?  The big C.  The awful disease that you only hear about with adults.  Did Jack REALLY have that?  Are we still in fear of it coming back?  No way.”  I pushed my negative thoughts, really all my thoughts, out of my head and got the kids ready for the day.  Braden and I took Jackers to school and he was a bit hesitant to get out of the car today in the drop off.  He gets like this at times when there is someone new.  He is very shy with new adults and I get that.  The male teacher helped him out of the car and Jack was a bit nervous out it.  He looked at me and I told him to go ahead, have a great day, I love him very much, and I will see him when he gets out.  The male teacher said, “Well, someones not a morning person is he.”  I know he meant it with no harm at all.  It was a total innocent comment and if I wasn’t over thinking, I would have laughed.  Instead I just put on my fake smile and as I drove away I thought, “No idiot, he is shy because he has been through hell and happens to get a little nervous around new adults.  I know you may think it’s not normal for a 5 year old to be so hessigant, but he is.  Give him a break.”  I know, totally over the top!

I came home with Braden and we got busy doing our normal playing and day to day activities and all the negative toughts started piling up.  I just sat down and starrted to cry while Braden started buiding a train track.  At that moment I got a text from Stacey asking if we wanted to BBQ that night…good timing.  A minute later I got a text from Scott asking the same thing but he threw in a pretty funny joke at the end of it.  About 10 mintues later, I got a call from Nikki because she had to run to the store and that meant she took a break from work so she wanted to say hi.  They had no idea how I was feeling ( I eneded up telling Stacey) but I just thought it was funny that when I was feeling pretty low and that it is really hard to talk to anyone aobut it, my family starts ringing in.  We decided that Saturday we were all doing go to up to an indoor carnival that was being put on by The Children’s Miracle Network for PCH and I am so glad that we did.  We all piled in our car and off we went.  It was fun to get out with the kids and do something different.  It was a break in the same ol’ routine.

Well it has taken me way to long to get the post up.  It’s now Monday morning and I have been writing this since Thursday!  It just shows you that there is not enough time in the day to get everything done that I need to get done.  I have promised myself that I am not going to let the stress of waiting for the call from Dr Eshun get to me this week.  We’ll see how that goes!!