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!

We have an amazing friend named Sue who is running 26.2 miles today in the PF Chang’s marathon in honor of all the little fighters who have been diagnosed with cancer.  I always say that everything doesn’t happen for a reason, but people come in to your life for a reason and there are many reasons why Sue came in to our lives.  Sue knew Zac from many years back, but I hadn’t met her until she found out about Jack having cancer and she wanted to reach out to help.  On March 8, 2010, Sue began volunteering at PCH…the same day that Jack was diagnosed and this was a total coincidence.  She would come and visit me at the hospital when we were inpatient to check in and see what she could do to help.  She would graciously walk in our room with that much needed coffee for me and a huge smile for Jack.  She has taken the hate for cancer that we all have and turned it into a passion to make a difference for these kids.  She is on the board for the Jack Morton Foundation and wants to do anything she can do to put an end to childhood cancer.  She is simply amazing.  If you could click on the link below and show your support for her as she runs today, that would be wonderful.  All donations to directly to fund childhood cancer research.

Sue wrote this today on Facebook:

Today I run 26.2 mies for the kids.
Because…. TODAY 7 beautiful warriors will earn their wings.
Because…. TODAY 46 families will learn their child has cancer
Because…. CANCER SUCKS!!

Please support the kids by clicking the link below and making a donation. 100% of all funds raised will fund childhood cancer research.

http://ccrf.convio.net/site/TR/Events/personalfundraising?pxfid=5850&fr_id=1140&pg=fund

Just a friendly reminder that I am placing the next order for shirts TODAY!! I am overwhelmed by the support you have shown and cannot explain the love and appreciation that I have for all of you! Please let me know if you want to be included in this order! You can either go to Jack’s Foundation page and click on the donate button to place your order or message me and I can give you the address to send payment to. Adults are $20 and kids are $15…don’t forget to include your sizes!! All of the proceeds will be going to the Center for Cancer and Blood Disorders at PCH!

lmorton@thejackmortonfoundation.org

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”