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Posts Tagged ‘Phoenix Childrens Hospital’

Scans yesterday

Friday, May 17th, 2013

 

 

 

 

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…
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What’s next for Jack…

Wednesday, April 17th, 2013

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!!  

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Some more info about tomorrow

Wednesday, April 10th, 2013

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!

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Heading to PCH tomorrow

Wednesday, March 20th, 2013

Everything was going great today…Jack woke up without having a fever and slept very well last night.  He ate well today, had energy, and never spiked a fever…until late tonight.  He threw up after dinner and up popped a fever of 101.5.  He is now sleeping next to me and his fever has gone down to 100.5 without medication…and this is a good thing.  The spike in the fever could be due to a million things…he got sick to his stomach, he was eating, it’s night time, he still has a head cold and cough…there is a million different reasons why this is happening but I am going to need to figure out why so we are heading to PCH tomorrow.  We will be getting a CBC as well as a blood panel done.  I may, and truly hope with all that is in me, that I am overreacting and that he just has a virus but I can’t go in to another day with the wonder of what in the hell is going on in his little body.  Something is off…it cold be the cold, but something isn’t ok.  I want nothing more than to be the crazy mom who worries far too much and have everything be ok with Jack.

I told a friend today that I saw this quote and it’s so very true:

“There are moments which mark your life.  Moments when you realize nothing will ever be the same and time is divided into two parts, before this, and after this.”

This is very true.  The moment Jack was diagnosed, my entire world was changed forever.  The way I act, think, react, feel, love, rationalize, the way I appreciate the little things (and the big things), the mission I have in life, the drive I have…everything has changed.   It took a moment.  A single moment to redirect my entire life….not only mine, but my families and many of my friends.  Things change and one of the small things that changed is the way I look at illness with my kids.  It freaks me out.  Freaks the living crap out of me.  It may not be what is “normal” but it is what is our life now and what it probably will be until my kids are grown men and have kids of their own.  I feel sorry for their future wives…I am on record now saying that I am sorry but I will be “that” mother-in-law.  My kids are my life…they are Zac’s life…we couldn’t live without them.

So, please….send your prayers, positive thoughts, energy, fairies, spells…whatever you wish…send all the good thoughts towards Jack.  Hopefully this is just a funky virus that he is having  hard time shaking.  Whatever it is, we will figure it out and we will get rid of it.  It’s what he does…it’s Jack.

 

 

So thankful!

Wednesday, March 6th, 2013

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!!