Jack is back in school and doing really well with getting back in the swing of things after a pretty rough week.  We went back down to PCH for a checkup with Dr Eshun and at the same time, we were doing the check presentation from the “Comedians for a Cure” event so it was an exciting day!

First for Jack’s checkup…we still do not really know what sort of an infection he had removed.  It was a node but that is about all we know.  All his labs look great, his urine analysis is the most “normal” it has ever been (which is really good!), he tested negative for Valley Fever but we will be doing another check for that next week.  Dr Eshun wants to send labs out to CA for a more in depth look at it to make sure he doesn’t have Valley Fever.  I promised Jack he wouldn’t be getting a poke yesterday so I wanted to keep that promise and would rather make another trip down to the hospital to get labs drawn so we will be doing that on Tuesday of next week.  We will also be doing another CT scan next month to follow up after the surgery and at that time, we will be having an MIBG scan done for extra precaution.  If you don’t remember what an MIBG scan is, it is the scan where we go in the day before and Jack is injected with a radioactive isotope that circulates through his body for 24 hours.  The next day we go back for a full body scan and if there is any active Neuroblastoma in his body, the isotope will cling on to it and it will light up on imaging.  We are confident that nothing will light up but we want to be as cautious as possible.

Everyone was thrilled that Jack was still cancer free and that the mass tested negative for tumor.  We walked in to clinic and almost every nurse and doctor (including Dr Eshun!) was wearing Jack’s “Stronger than cancer” shirt.  It was such an amazing feeling to see how much they all care about Jack and about all of the kiddos that walk into that hospital.  They are constantly rooting for all of them and you can see on their faces just how much they love these kids.

We were able to all gather around and I told them all how much we love and appreciate them.  How we know that the protocol that Jack was on obviously killed the cancer in his body but there is no way we would have gotten through the past few years without the compassion and support they have given us.  These people are more than incredibly intelligent doctors and nurses, they truly do become your family.  After we thanked them for everything and presented them with the check for just over $37,000, Dr Eshun said he wanted to say a few words.  This is where Nikki and I became a tad teary again!  He thanked us for all that we are doing to raise awareness for Neuroblastoma and Childhood Cancer in general.  He told us how much he loves our “Comedians for  a Cure” event not only because it is a fun night but because it brings together so many families that have gone through treatment at PCH.  He loves how he saw so many parents and employees of PCH in attendance.  It really felt amazing to know that he, and the rest of clinic, support us and what we do.

All in all, it was a good day.  It was great to be able to give back so much for Neuroblastoma research and it was even better to know that Jack is still cancer free.  This child amazes me with his strength and resilience.  He has once again confirmed for us that we are dong exactly what we need to be doing.  Fighting for him and for all of the kids and families that have had to face cancer.

Jack was a tad shy so he didn’t really want to take the pic!  Look at all the shirts!!  So amazing!!!  I am going to be putting in another order soon so if you want to show that you believe we all are “Stronger than cancer”, you can go to the donate tab at the top of the page and donate the amount for the shirt.  Short sleeve shirts are $20, long sleeve are $25, and children’s are $15.  The short sleeves are more “fitted” so they do run a little small and come in both woman’s and mens sizes.  The long sleeve are unisex and both are so comfy!!  

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!

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!!!

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.

Saturday’s Ignite Hope Walk was beyond successful!  I am not sure yet of the total number that was brought in for PCH, but I do know that our “Stronger Than Cancer” team brought in just over $6800!  We are happy to say that we were the top team and we are thrilled about it!  Thank you for taking the time to walk with us or to donate.  We have some pretty amazing people who have stood behind our mission and we can’t thank you enough.  Nikki was a great team captain and did an amazing job putting this all together.

When we arrived at the hospital, the emotions were a bit overwhelming.  We walked up as they were paying Silent Night and you could see all the little heroes inside waving their lights down to us.  Since we were at the front of the walk, we were able to see over 1,000 people with their lights file in.  This year was the first time the walk was put on and I hope it continues for years to come.

Nikki and I are headed back to PCH to present the check with the rest of the Children’s Fight for Life committee  to the center for cancer and blood disorders. How amazing that the event brought in $100,000 this year!  I really look forward to giving them that money tonight!!

Now that the walk is over, we are starting to plan our event for March, Comedians for a Cure! I am really excited about this year!  Last year was our first year and you always learn something new each time you do an event so I think that this year is going to be much larger than last.  As we get in new details, we will release them to you!  As of now, we are looking at Sunday, March 10th for the event…mark your calendars!!

Last note:  I have been getting emails asking about shirts and if we still have them and yes we do!  We have most sizes left as well as some long sleeves now!  We will be selling the long sleeves for $25 (which are unisex and super comfortable!).  If we don’t not have your size, we will order it in the next order we place!  All you have to do is donate the appropriate amount for what you want and don’t forget to note the sizes!  If you have any questions at all, contact me at lmorton@thejackmortonfoundation.org.

Thank you!!!!

Some of our “Stronger Than Cancer” Team!

Kiddos having fun before the walk began:

Tons of activities for the kiddos to do before we began…

Nikki holding the flag since our team raised the most money!

Starting off the walk!

Braden was so excited!

My mom and I!  She flew in just for the day to be here with us:

Jack and Meg holding up his light so the little heroes inside could see us:

This is what it looked like form inside the hospital looking down…pretty emotional!