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…

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.

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.

It has been forever since we have posted anything but I think we needed a break for a bit.  Not from posting, just from everything….make sense??  Our air went out in the house and if you live in Arizona, you know how awful that is!  It was 110 out and we decided to ditch AZ for CA for a week and a half and it was well worth it!  We stayed with my parents for most of the trip and it was great!  We went to Sea World with the the kids and they really enjoyed it.  The beach is by far their favorite place to be and I wish we could have gone there more but weather was not the best for the ocean.  We had a good time just getting away from everything.

We came back Sunday night to a cool house because of a new air unit and it is much better in here!  Jack had two doctors appointments today…he had to get an Echo and a EKG as well as do a pulmonary function test.  He did good with both and I am sure we will hear from Dr Eshun in the next couple of days with results.  I don’t anticipate them being any less than great so let’s just go with that!

Tomorrow Jack has to meet with a urologist.  During his last set of scans they saw that one of his testicles has moved back up and not descended.  After seeing Eshun and his pediatrician, they both wanted him to go see a urologist to see if he needs a procedure to bring it back down.  Most of the time they will just wait it out to see if it falls on it’s own, but with Jack’s past we will probably opt for the procedure.  The treatment that Jack has gone through may affect his chance to have kids when his is older as well as increase his odds for secondary cancer so we want to always do everything to prevent all we can.  When a testicle is not in the proper place, the temperature is not accurate and can be damaging for his future for both kids and testicular cancer.  Of course these are worst case scenarios, but like I said, because of Jack’s past we will do everything to prevent any more damage to his body….sooooo off to the urologist we go.  Probably more info than you needed, but it is what it is!

Today marks the beginning of International Neuroblastoma Awareness week…do us a favor, take the time to share Jack’s story with someone you know who you haven’t shared it with.  Send them his website…let them know how awful this beast is and how we need to do everything we can to help spread awareness and raise money for research.  Let someone know how many children are affected by this disease every year and how we need to do something to change this.  Here are a few facts:

Neuroblastoma is a cancer that develops from nerve cells found in several areas of the body. Neuroblastoma most commonly arises in and around the adrenal glands, which have similar origins to nerve cells and sit atop the kidneys. However, neuroblastoma can also develop in other areas of the abdomen and in the chest, neck and pelvis, where groups of nerve cells exist.

• Neuroblastoma is a common and often difficult to treat cancer, the most common cancer in infancy.
• In the United States, about 600 children are diagnosed with neuroblastoma each year.
• It is the most common tumor found in children younger than 1 year of age.
• Neuroblastoma is the most common extra cranial solid tumor cancer in children.
• Every 16 hours a child with neuroblastoma dies.
• There is no known cure for relapsed neuroblastoma.
• Nearly 70% of those children first diagnosed with neuroblastoma have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2, there is less than a 30% chance of survival.

We will share more facts as the week continues because we want to do all we can to help fight this disease.  As always, thank you so much for all of your support.  One day we will find the words to tell you how much we appreciate it…