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!

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.

I finally heard from PCH today and Jack’s VMA/HVA results are totally normal.  This urine test is a very important test because it can detect Neuroblstoma in the body and since his are normal, we can take a deep breath for a few months until his next set of scans in November. It feels so much better!

I can say that today has been a great day.  The fact that the Stand Up 2 Cancer photo contest is ending today has caused a bit of nervousness but that is only because we think this would be such an amazing opportunity.  I cannot even imagine the feeling of standing in a room with thousands who are all there for the same reason…to stand up to cancer until there is no more.  Can you imagine?!  What a wonderful experience that would be!!

I am also very humbled by the response of my friends who have voted for Jacks’ picture and the wonderful things they have said about him.  It amazes me every day how many people Jack has touched and how inspirational he can be.

It has been a bit since I started writing and I just got a call from Dr Eshun confirming the results we were told earlier.  He went over everything and thinks Jack is doing really well.  He also finally admitted that I am a tad neurotic.  It was pretty funny to hear but he is so right!  I am so thankful that we were given Dr Eshun as Jack’s doctor.  Not only do I think that there isn’t another oncologist that would have been able to deal with me, but I really believe that he is the best oncologist out there.  He never looked at Jack as a statistic.  He look at Jack as a son, a grandson, a nephew, a friend, a cousin…he looked at Jack as an individiual that he wanted to help make better…and that is what he did.  We will be forever greateful to Dr Eshun.

So tonight is the last night for voting on the SU2C Facebook page….if you are on Facebook, vote NOW!

http://apps.facebook.com/istandupfor/contests/261680/voteable_entries/55189654

We woke up this morning to seeing The Fitzgerald Cancer Fund in the crowd at the Today Show with huge pictures of Neuroblastoma cancer warriors and angels.  Al Roker went over to the crowd of people showing support for NB and they were allowed to speak for a couple of minutes about the loss of their daughter to Neuroblastoma and how they want to raise awareness and funds for safer treatments and ultimately find a cure.  It is is great when we see people spreading the word about Neuroblastoma…without awareness, you can’t find a cure.  The huge pictures of the kids that they were showing are many of the children that we follow or know.  It was great to see their little faces on the tv first thing this morning.  Congratulations to the Fitzgerald Cancer Fund for putting yourself out there and getting the awareness you were after!  As you all know, we love The Today Show and that is a great place to get your story out!  It really is amazing how the knowledge of NB has been growing.  Two yeas ago, no one ever talked about this disease.  I had never heard of it and I am sure most of you hadn’t either.  To know that more and more people are standing up and making a stand, is simply amazing to see.

I know we haven’t done an update since last week, but just so you all know…all is well.  Dr Eshun called us last week and said that Jack’s echo and EKG looked great.  He said, “In fact, it looks better than it did last year when he was on treatment.”  I was a little surprised about that because I wasn’t aware that there was ever a time that his heart looked as if it wasn’t any less than perfect, but to know that is body is improving daily is all that I really want to know.  We don’t have the results from the pulmonary function test, but as I have said before, I am really not worried about it.  I think he is doing well and I am sure that is what the tests will show.

We had a great 4 day weekend with Zac being home.  We had dinner with friends, played a lot, actually had a date night by ourselves (which rarely happens!), and celebrated Father’s Day before he headed out again.  I will post some pictures later for you to see….including the shirt we made for Zac which happens to be pretty cute and funny!

I am off to make breakfast now for the kids and then doing a quick ride outside before it becomes unbearably hot out!!