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!

Inspirational is the word that I think really would sum up the Stand Up to Cancer event that Nikki and I were able to attend Friday night in LA.  It was truly a night that we will never forget.  We made our way to the Shrine Auditorium around 2:30 where we first met two other woman who were invited to attend the event because they raise so much money every year for SU2C.  They were so great to talk with and such amazing people.  We were both there for interviews so we chatted for a bit while we were waiting our turn.  Of course our turn came and I Nikki and I were there to really answer just a few questions but I knew the few questions would make me cry….like usual!  Nikki stood there with me while I chocked back the tears and told the camera how cancer has come into our lives and then when the words wouldn’t come out anymore, Nikki stepped in and finished my sentence.  I swear, for being 5 years younger than me, she sure does take on the role of an “older” sister.  She picks me up when I am falling down and always is there to support me.  I cannot thank her enough for going out there with me since Zac was gone with work.

After interviews we had plenty of time to mingle, and that’s just what we did.  We met so many wonderful people that had such amazing stories of their experience with cancer and how it has changed their lives.  It was an odd feeling because you felt so honored to be in the same room with so many amazing people, but at the same time you hated the fact that you were in a room filled with so many people that were affected by cancer.  It just doesn’t seem right that cancer is a part of so many peoples lives.

We were taken to our seats for the show and I can say that they pretty much amazing.  We met some of the other people who were there from the photo contest and it was great to put a face to the pictures that we had already become familiar with online.  There was a little boy sitting 2 rows in front of us that reminded me of Jack and I knew we had to talk to him.  I went down and introduced myself to Jaiden and his father and fell in love with this little 5 year old immediately.  He was shy at first but warmed up right away.  All I wanted to do was keep kissing his little bald head and soak up all his feisty energy.  We talked with Jaiden and his dad for quite a long time and learned that he was being treated for Wilms’ Tumor, a form of Neuroblastoma, and was doing extremely well.  You could see the pain in his dads eyes as he would tell us of what Jaiden had been through and all of his hopes for the future.   My heart hurt for him as I can relate to his fears, but  you could see the strength and determination that came out of Jaiden so we know he will make it through.  We told Jaiden that we would send him something from the Foundation when we got back home and of course he requested a big rig.  Not sure how we will ship that one, but we will figure it out!

From the moment the show started, I don’t think there was too many times when the tears were not falling.  We had heard that Taylor Swift was going to come out and sing the song “Ronan” that she had written about Rockstar Ronan who we have told you about many times.  Ronan and Jack were being treated at the same time at PCH for Neuroblastoma when Ronan’s treatment plan took a turn and he was taken away from his family way too soon. We knew it was going to be amazing, but when she started singing, the entire room stopped breathing.  It was such a beautiful song with the words taken straight from Maya’s mouth which made it even more real.  ”Ronan” is available on iTunes and all of the proceeds from the song will go to funding cancer research.  Please go on to iTunes and purchase the song…it has been #1 since it was released for purchase and it would be great to keep it there.  I promise if you haven’t heard it, grab a tissue.  A whole box.

SU2C focused a lot of pediatric cancer this year and that was amazing to hear.  They are putting together a dream team of doctors and scientists to help find better treatment for pediatric cancer with hopes of one day finding a cure.  If you were not able to donate the night of the event, you can text STAND to 40202 and you will donate $10 to SU2C.  Every penny counts so please take the time to do this!

I think my brain is on overload from all that we have done this weekend and I am totally exhausted so I will be cutting this short.  Thank you for all of the votes that made it possible for Nikki and I to go to LA.  Thank you to Stand Up 2 Cancer for such an amazing opportunity.  Thank you to all of the amazing people that we met there for showing support for Jack by wearing his bracelet and for sharing your stories with us.  We hope to hear from you all soon!!

Jaiden….if your Daddy is reading this, tell him to send us your address so we can get you that big rig!  Keep fighting…stay strong…keep your faith…and never give up!!  lmorton@thejackmortonfoundation.org

Nikki and I on our way!

This board was one of two that was filled (by the end of the night) with people writing who they stand up for…pretty cool

Just a couple of fellow cancer haters…loved them!

Our great seats

Jaiden!

My mind feels so cloudy today.  I cannot stop thinking of Ava and her parents and brother.  I cannot stop thinking about how they are feeling today when they woke up this morning, or if they even slept last night.  I think of Jack and how lucky we are that he is here and doing so well and in a way I feel guilty.  I do not feel guilty that he is alive and I do not feel guilty that he is here and healthy.  I feel guilty because Ava is gone and for some reason Neuroblastoma took her life and not Jacks.  Survivors guilt.  It sucks.  I am sure it is nowhere in comparison to what Ava’s family is feeling, but it sucks.  Your heart hurts for their family.  Your heart hurts for Ava and that she had to go through so much in her short life that was just pure hell.  My heart hurts for her doctors that tried so hard to do everything they could to cure her of this awful disease and it didn’t work because I know they are at home tonight thinking of her.  Her mom said in her post “Ava did not lose to cancer” and I can imagine that was something that she decided a long time ago.  Ava was a fighter.  Through the posts that her family wrote, you could see that this little girl had a heart of gold and was so determined.  Her body just didn’t agree.  Why Ava?  Why Ben? Why Jake? Why Ronan?  Like Jack said, “Why do all my friends from the hospital go to heaven?” How do you answer that?  You can’t.  There is not a reason why the treatment works for some and not others.  It is not because “Jack is supposed to be someone”…so does that mean these other beautiful kids weren’t?  I don’t think so.  ”Everything happens for a reason.”  Tell that to the parents of these 4 kids.  I don’t believe that either.  ”God only gives you what you can handle” So does that mean that I would go in a looney bin if Jack didn’t make it through treatment and these parents won’t?  I don’t think so.  I probably would go in to a looney bin, no doubt, but that doesn’t mean that I am given any less heartache because of it.  I can guarantee you that these parents, among so many other, feel like like they could check in the looney bin at times too and often wonder, “Why did he do well and my child didn’t?”  I know that because I have felt the effects of it.  Some parents that I thought I would always have a friendship with have shunned me because they lost their child.  I understand that in a way but it also hurts…survivor guilt.

It is times like these…times when we have to accept the fact that yet another innocent child has died because of cancer that makes you wonder all of this and it is ok to actually say it out loud.  I think of all of these things often but I usually chose to keep them to myself.  I think of the other children we have met and that are doing great…McKenna, Cameron, Olivia, Braden…and so many others.  I think of Alex who has hit a few bumps in the road but him and his family continue to fight so hard and keep that faith that he will win.  I think of those who will be diagnosed this year and what new treatments will be available to them that weren’t available to Jack and if that will make a difference in the future.  Would timing have changed the outcome of the kids who were robbed of their childhoood?  How is that fair?  It simply isn’t.  It isn’t fair that any of these children were diagnosed with cancer.  It isn’t fair for any child to be diagnosed with any sort of disease….period.  I think of  this and want to do more.  I know I go on and invite you all to benefits and fundraisers over and over again.  I constantly ask for help (which I never would have done in my past life…past as in “before cancer”)  I ask you all because you all are the ones who can save these kids.  The doctors that we have come in contact with are in this profession because they want to save lives.  They do not want to sit back and watch children die.  The problem is that they have no funding, so who do the depend on….us.

So I will continue to ask for your help and continue to invite you to fundraisers because I need you.  We as a family need you.  The children who have been diagnosed need you and those who will be diagnosed in the future need you.  If you can, at any time, help…please do.  I am not a person who will accept the word “No” so you bet your ass I will keep asking until I get a “Yes”

Ok folks, we are getting ready to take off for day 2 of scans.  Yesterday went really well and Jack was very happy about only having to do the CT scans but not too thrilled about having to put an IV in. He put up a bit of a fight when it was time to hold his arm out, but once they started he didn’t even know it was happening.  He did really well with the CT and picked out a prize after….a stuffed bat that he wants to take to clinic on Friday to scare the nurses.  He thinks it is just so funny that he would do that!

We had to wait around for about a hour before he got the injection for the MIBG so we sat and ate some lunch at the cafeteria and visited with our favorite person from Child Life, Amanda.  Jack is very shy now in front of all the people at the hospital that he used to be so outgoing with and I am not sure why.  Maybe he feels like if he gets too close he will have to go back??  Not sure.

Anyhow, we go in this morning first to the orthopedic to see if we can take his boot off or at least see how his bone is healing from his attempt at flying.  Hopefully he can take it off and get back to playing more outside because I know he misses it.  After that we will be checking in and getting another IV done before his scan so Dr Maze can give him anesthesia.  We saw Dr Maze yesterday…he is such a nice man.  He tickled Jack and made him laugh, told him he loved him and just how cute he is.  He is so good with him.  Of course he asked me about my whole family that he knows because he really does care about everyone.  The MIBG should only last about a hour or so and then we will be heading home and I will turn my ringer up as high as it will go and hold it close to me until Dr Eshun calls and tells us, “I have good news for you!  You don’t have to worry…he is fine!  It’s Jack afterall!”

Please keep the prayers coming!!

Well Jack has been doing great since radiation was completed.  The Dr thought that his energy would drop off around his last week, but that never happened!  They did say that his throat would start bothering him and last for a couple of weeks since the radiation area was so close to his esophagus.  They said it would feel as if something was stuck in his throat so he might have a gag problem…and he has lately.  Once a day he takes too big of a bite and it gags him and he gets sick to his stomach, but 2 seconds later he is eating and drinking again so it really hasn’t bothered him too much. Other than that, he is doing great.  His hair is growing in!  Not sure what color it will be…looks like a mix of dark and light so we will have to see!

Our wonderful neighbor, Angie, was in charge of her kids school carnival that was this morning.  Since he has been watching Angie build all sorts of carnival games for the last week, we decided it would be fun to take him down there this morning before all the kids got there so he could get out and have some fun.  He loved it!  Angie did a wonderful job (as we knew she would) and he was able to go into a Spiderman bouncy house with Daddy and play all sorts of little games.  He kept telling us how fun the circus was and what a great day he was having.  I swear, this little boy loves every minute of life.  He has such an appreciation for all that he is able to do…I am sure we all could learn a thing or two from him.

Zac ran out after we got home and bought the kids some new warm PJ’s (since it is freezing in our house at night!) and brought home some monster slippers for Jack.  He is running around trying to scare everyone and telling me to play with him at the monster competition…no clue what he is talking about, but looks like we are going to play some interesting games!

A few side notes…our neighbor, Anna, has been battling cancer for the past 5 years.  She is 15 years old and is one of the strongest and wisest  young woman that I have ever met.  She really needs a lot of love and prayers right now.  I am asking if you would please visit her website, www.caringbridge.org/visit/annawilkerson, and read her story and her journal. 

Also, two days ago was Zac’s dads birthday so we want to say Happy Birthday to him.  Today would have been his mom’s birthday, but as most of you know, we lost Mary Lou in April of 2008 in a tragic accident.  We miss you Mary Lou and know that you are watching us and protecting our boys from above.  There is not a day that goes by when we don’t think of Mary Lou and we are often reminded, in many different ways, that she is still with us.