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.

Well Jack has been doing great since radiation was completed.  The Dr thought that his energy would drop off around his last week, but that never happened!  They did say that his throat would start bothering him and last for a couple of weeks since the radiation area was so close to his esophagus.  They said it would feel as if something was stuck in his throat so he might have a gag problem…and he has lately.  Once a day he takes too big of a bite and it gags him and he gets sick to his stomach, but 2 seconds later he is eating and drinking again so it really hasn’t bothered him too much. Other than that, he is doing great.  His hair is growing in!  Not sure what color it will be…looks like a mix of dark and light so we will have to see!

Our wonderful neighbor, Angie, was in charge of her kids school carnival that was this morning.  Since he has been watching Angie build all sorts of carnival games for the last week, we decided it would be fun to take him down there this morning before all the kids got there so he could get out and have some fun.  He loved it!  Angie did a wonderful job (as we knew she would) and he was able to go into a Spiderman bouncy house with Daddy and play all sorts of little games.  He kept telling us how fun the circus was and what a great day he was having.  I swear, this little boy loves every minute of life.  He has such an appreciation for all that he is able to do…I am sure we all could learn a thing or two from him.

Zac ran out after we got home and bought the kids some new warm PJ’s (since it is freezing in our house at night!) and brought home some monster slippers for Jack.  He is running around trying to scare everyone and telling me to play with him at the monster competition…no clue what he is talking about, but looks like we are going to play some interesting games!

A few side notes…our neighbor, Anna, has been battling cancer for the past 5 years.  She is 15 years old and is one of the strongest and wisest  young woman that I have ever met.  She really needs a lot of love and prayers right now.  I am asking if you would please visit her website, www.caringbridge.org/visit/annawilkerson, and read her story and her journal. 

Also, two days ago was Zac’s dads birthday so we want to say Happy Birthday to him.  Today would have been his mom’s birthday, but as most of you know, we lost Mary Lou in April of 2008 in a tragic accident.  We miss you Mary Lou and know that you are watching us and protecting our boys from above.  There is not a day that goes by when we don’t think of Mary Lou and we are often reminded, in many different ways, that she is still with us.

Day +39

Well we haven’t written in 5 days and we have just been so busy and sometimes just busy doing nothing. Does that even make sense???

Nikki and Shawn had a safe drive from Idaho and arrived late Saturday night. Zac was at a golf tournament for work so he wasn’t here when they arrived. Jack was so very excited for them to get here. We went out to see them as they pulled up and our new neighbors across the street were outside decorating for Halloween so we were able to meet them. They are so very sweet and have two young boys. They ended up putting up lights on our house for Halloween and we thought that was so sweet. Jack loves having the lights.

Sunday we all got up nice and early and Jack, Zac, and Shawn took a ride in the neighbors golf cart to Starbucks to get us all coffee (it’s right across the street and yes they went through the drive thru) and Jack thought that was so much fun. After unloading Nikki and Shawny, Shawn had to hurry off to the airport so he could get back to work.

Zac had to go back to back to Tucson for work Monday and we tried to get things accomplished around the house. We were able to get out and Jack got to go to the park for the first time in so long. He was so happy being outside. I was also able to connect with a family that I used to nanny for years ago. They were such a huge part of my life and I just have always loved all of them. I didn’t have their number and I was honestly scared to tell them about Jack because it has been a few years since I have seen them and they are like family to me. It is hard to talk about Jack with people that you are close to because it always makes it even more real. I was able to tell them everything and they automatically said that they were stopping over today even if they had to stand outside just to see me. I thought that was so sweet of them. You really realize when you go through something like this who you can count on and Melanie and Barry are 2 of those people. They stopped over tonight and were able to meet the boys and they loved them. For those of you who know Jack, he doesn’t warm up to everyone and he totally did with them. He tried to make Melanie play the Wii and Braden was all smiles and flirty with her as well. I just can’t tell you how happy I was to see them tonight….thank you so much for stopping over to see us!!

Zac was able to come home tonight and he will be taking tomorrow off to go to Jacks’s first radiation session tomorrow morning. We have to leave around 5:30 am so that should be interesting. Please pray for Jack that he get through this with as little side effects as possible. He is our fighter and he will do this with such courage as he has with everything else.

I heard this the other day and I think this is how we have been able to get though this journey….”we all have problems but we also all have triumphs. If we focus on on the triumphs and the positive, we can get through our lows that much better.”. So true.