Just a little update to let you know that Jack did really well yesterday with his scans.  We got to the hospital and he was in great spirits.  We were able to deliver some of our “Stronger Than Cancer” shirts to some of the PCH employees since we had a little bit of time on our hands.  Walking back in to radiology used to feel like you were walking into the hallways of doom because it’s simply terrifying but now, even though we are still nervous about it all, we walk back there and we are greeted by our second family.  The nuclear med team, the CT team, nurse Angela, and of course Dr Maze are all there waiting for us and with open arms.  They care so much about Jack and our family and knowing that they will take such amazing care of him while he is under, makes a huge difference.

Jack fell asleep well, with a smile on his face but with a very strong grip on to Zac’s shirt.  We gave him kisses and ran up to the oncology floor to deliver some more shirts while he was asleep.  The scans didn’t take any longer than needed and we were back in recovery in about 1 1/2 hours.  Jack was sound asleep and after about 20 minutes, he woke up well, ate his popsicle, and we headed home….with a small stop at Toys R Us of course!  Once we were home he had another snack and out he went to play in the backyard….all was back to normal again!

Now we sit and wait for Dr Eshun to call.  We know we won’t know full details until Tuesday but I am really hoping that we get some preliminary results today at some point.  My birthday is on Saturday and the only thing I want is for Jack’s scans to be clear and for him to be cancer free forever.

Thank you all for your love and support…it means so much to us…

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!!  

We are putting in an order on Tuesday of next week so please let us know what sizes you want!!  All you have to do is click on the “Donate” tab and donate for the amount of shirts you want.  $20 for adults and $15 for children.  Don’t forget to add a note of what sizes you want!!  Please email me with any questions!

lmorton@thejackmortfoundation.org

How handsome is Jack in his shirt!  He was so proud to wear his today!

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.

It’s been awhile since I have had a post and I have been jotting down things to write about but it all went to hell when Jack gave me a reality check tonight at bed time.  We just got done reading “Warrior Baby” by Shannon Laffoon and he told me he loved the book and put it in a special spot on his bookcase.  He said, “I know just where to put this one….” and off he went.  I asked him if he liked the book and he said he really did and wanted to know more about Wylder and his dog Maddie.  We talked for a bit and then turned off the lights.  He lined up his “guys”…Norbert, Tiger, Bunny, Mario, and Luigi in the correct order and then put his head on his pillow with a smile.  I asked if we should do our prayers now and of course he said yes.  We thanked God for our family and friends.  We thanked God for our health, the food on our table, and the roof over our head.  We asked God to protect our family as he has been…not just us, but our aunts and uncles, cousins, grandparents…everyone.  We asked God to help the kids at the hospital that were hurting…to somehow take away their pain and give them hope.  After we were done with our normal prayers, I asked Jack if there was anything he wanted to say and he said…

“Am I allowed to thank God for my toys?”

I told him of course he was…

He said, “Thank you for my toys, my mom, my dad, my brother, my family, my friends…”

I asked him if he wanted to thank God for anything else like “No more…”

And Jack said, “Cancer?”

I said, “Yes, do you want to thank God for no more cancer and to ask him to keep it away forever?”

Jack said, “I already do.”

Me, “Oh…you do?  When?  Every night”

Jack, “pretty much…I always ask for that.”

Oh.  Ok.  Really?  My 5 year old asks God for no more cancer every night on his own, by himself, before bed…Wow.

I am not sure if I should be screaming with pride that my 5 year old would do such a thing or sick to my stomach that he is even thinking of such a thing.  This is what I am going to go with…

I am proud of him.  I am so very proud of him.  When I was asked what gave me the strength to get through the months of treatment that he went though, I said Jack is what got me through. He gave me strength.  He gave me power.  He should be the one getting strength from me and Zac, but he is the one who was doing it.  He knew from the beginning that hew as going to fight and he did.  He knew when he was 2 1/2 that he was going to be ok, because he told me.  He took my face in his tiny little hands and told me, “I am ok.” I believed him and that is what powered me through.  I think he has a connection with others that we don’t have.  Maybe it’s my Grandpa…maybe isn’t his Nanna Lou…I am not sure what it is, but he is wise.  I am a planner, but he plans it out before me and doesn’t even tell me.  He continues to go on with his little life like nothing has happened to him because he knows that every second counts.  Sounds a bit much for a 5 year old…maybe so, but it’s honestly the truth.  He got up every single day through treatment and kept on pushing.  Continued fighting.  Continued loving his life while he was going through hell.  He is my inspiration.  He is my strength.  He is my reason to fight and my reason to never give up.  He prays for no more cancer at night while he is falling asleep.  He is my hero.