I have been getting texts and emails asking if we have Jack’s urine results and we don’t.  I even wrote Eshun today to ask him and he just responded that there is nothing back yet.  Ughhhhhh.  I so wish there was!  Jack is doing great and loving school so that is what should matter anyway.  He is happy and healthy so I know these results will be just fine!

I couldn’t sleep last night and it has been really bothering me that I have been so down this week…I think one of the reasons is that this week would normally be the scanxiety week.  We have been doing scans every 3 months for so long and usually we would be mentally preparing ourselves for them right now but since Jack has been doing so well, he doesn’t go back until the 6 month mark, which is November.  I looked up on Jack’s blog to see what we were doing 1 year ago today and we were having his cancer free party!  That has to be a good sign, right?!  I went back 2 years and he was just finishing his 6th round of chemo and preparing for stem cell transplant.  That time was so scary and to think that we are almost 2 years post that is unreal.  I remember that time as if it was yesterday.

On September 3rd, Jack will be celebrating his 2nd birthday.  They call it a birthday because when you have a transplant, they basically take your body defense down to 0 and wipe out all of your healthy cells and are “reborn” again.  In the meeting we had before transplant, they told us (in so many words) that Jack would be on his death bed and his healthy cells were going to bring him back to life.  Scary?  Just a tad.  But Jack, in typical “Jack” form, sailed through transplant and set records on recovery time.  This kid is a fighter…he is a survivor.

I will update you when we here any news at all….

Thank you for checking in on us…it means so much.

Also, I am going to be putting in an order for bracelts so if you would like to show your support for Jack and our fight to raise awareness, make a $5 donation and we will send you a bracelet.  All money raised from bracelet sales will benefit the Children’s Fight for Life night!!

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!!

Well it’s after 9:00 PM so obviously we won’t be hearing from Dr Eshun tonight….ughh.

Jack did really well today though so that’s a plus!  We arrived at PCH on time and all went really smooth.  We were really happy to see our favorite nucular med nurse, Angela, there and then to know that she would be taking care of Jack while he was under was an extra bonus!  We got to see the Amazing Mary and the rest of the nucular med team and that’s something we actually really enjoy.  The people that are down in this department are really top notch.  We really love them all and consider them part of our family so it is always nice to see them.  Dr Maze arrived and after chatting with him for a bit we got the show on the road.  Jack did well with the mask and went right to sleep.  Almost exactly 1 1/2 hours later, Dr Maze came out and said, “Well do you plan on coming back and seeing him or just sitting in this waiting room all day.”  Typical Dr Maze…love him.  He said Jack did well despite his cold and that was proven when he woke up within 5 minutes of my Dad and I being back there.  Usually he snoozes for a bit, but not this time!  He was up very fast, had his purple popsicle, apple juice, and grabbed his gold fish for the road and we were off.  By the time we got home, he was running around like a crazy man and ate a wonderful dinner so it seems like he is getting back to his old self already.

We are sitting and waiting now for Dr Eshun to call to give us final results but we feel pretty good about it this time.  I am nervous as all get out, but I feel good.

Tomorrow my Dad and I are taking Jack to see a new endocrinologist.  I didn’t get the best “vibe” from his last doctor so we decided to make a change.  We will meet the new doc tomorrow and see what he thinks about Jack’s thyroid and were we need to go from here.  Hopefully we will hear from Eshun tomorrow but we may not until we see him Friday morning.  We will keep you in the loop as we get the news.

I am attaching some pics from the last couple of days…some are of Jack falling asleep at scans so I just wanted to give you the heads up about that.  He is always safe with Dr Maze and that is why we feel comfortable showing pics of him being put under.

I also want to take a second to say thank you to all of you….old friends, new friends, some we have never met for all of your encouraging words of the last week.  I have recieved so many wonderful texts, emails, Facebook posts, Twitter messages…it is all just so comforting.  Thank you from the bottom of my heart…

Day 1…CT Scan…

Day 2…reading before Dr Maze arrives…

and here he is…cracking jokes as usual!

Today Zac and I took the boys out to Longbow Golf Club in Mesa for the 8th annual Fore Noah and Friends Golf Tournament where all proceeds go to Neuroblastoma research.  Noah was diagnosed with Neuroblastoma in 2005 and has been cancer free for 7 years now!!  His family holds this tournament each year and they have raised about $60,000 each year at this event.  We has such a great time out there today and we can’t wait to hear how much they ended up raising this year!  I got to chat with Lara (Noah’s mom) for a bit and I also got to see a family that I used to nanny for 10 years ago!  I can’t believe how the time flies.  The boys had a great time and I thought you would enjoy a few pics of the day….I promise Braden was happy on the slides!!

With the end of April being here, the countdown to Jack’s 5th birthday and scan week will begin.  Jack turns 5 on May 11th and we are so happy for that.  We are so thankful that we can celebrate another birthday with Jack…even more thankful that it is a birthday where he is cancer free!  Jack’s scans start on the 15th and we will hopefully know results by the 17th and then have an appointment with Dr Eshun on the 18th.  Please send all of your positive thoughts, energy, and prayers Jack’s way.  When these results come back clear, Jack’s scans will be able to be spread out to 6 months apart instead of every 3 months.  Of course that is terrifying that it will be so long in between scans, but it is just one small step further away from the day that the Devil knocked on our door and that is something that we cannot be happier about.

Well Hello!

We have had a wonderful holiday weekend with our family all being here.  Zac and Shawn (Nikki’s husband) were only here for a couple of days, but a couple of days is better than nothing!  My parents came in town and we had Thanksgiving over at my sister’s house across the street.  Zac’s Dad was able to come by during the day as well as a visit from his brother, Jess, at my sisters house that night.  The kids all had a great time playing together and it was just a simple understood fact between everyone that we were all so happy that we were there together.  When we sat down to dinner my aunt and my mom had some very nice things to say about the family and then Zac took the floor.  Zac is a very quiet person so when he said he had something to say I was a bit blown away.  It was wonderful to hear him tell everyone how thankful he is and how happy we could all be together.  It was a wonderful moment that I will never forget.

Zac had to leave the day after Thanksgiving to head back out of town to work so he wasn’t able to join us at our annual Zoo Lights trip, but we still had a good time.  The kids love it and this year my aunt and her family along with some other friends were able to come this year and it was a good time by all.  Jack actually sat on Santa’s lap this year and while he looked a tad terrified, he did well.  He said that he was “so proud of himself” after he was all done and that was pretty cute. Braden on the other hand, wanted nothing at all to do with Santa so I wasn’t going to push it on him!

The decorations are almost all up for the season…the tree and the ornaments are up but the lights will be the challenge with Zac being gone but I know we will get that done!  Jack just loves driving around and looking at lights and there will be no way that we don’t include our house!

We start getting back in to the swing of things tomorrow with Jack going back to school again this week and counting down to Christmas time…I can hardly believe it is that time of the year.  Time flies.

I didn’t update on Jack’s appointment with the endocrinologist last week.  We went and it was a pretty quick and painless appointment.  Jack’s thyroid function is totally normal and it has been since he started his medication back in August.  Since his thyroid was only slightly elevated, I asked the Dr if we could cut the dose of meds in half and see if anything changes.  I would really love for him not to have to take any medication at all especially since the numbers of elevation were so very small.  He said that he had no problem cutting out the med all together 6 weeks before Jack’s next set of scans and then taking labs when he is under to see where he is at. So we will be stopping his medication in the beginning of January and then when we have scans the 3rd week of February we will check his levels.  I really hope that he is in the “normal” range and that we get to stop meds.  It would be so wonderful to have him on nothing at all!!!

Anyway, I will attach some pics that I forgot to attach before…some from scans, Thanksgiving, Zoo Lights, and of course the night of clear scan results!!

Scans:

Getting poked for the 2nd time….and then the 3rd!  He did so good!

CT scan with no anesthesia…

Seeing Dr Maze before anesthesia…he was joking with Jack and then wanted to see pictures of Nikki’s wedding and Jackers dancing at the reception….he is the best!

Waiting really is the worst part…

Worth the wait!  All clear!  Jack (last minute) asked for a sparkle cake and this is what we had in the house to work with!

Thanksgiving…

My sisters and my mom…some of our biggest supporters!

Jess and Zac and the kids!

Braden!

Zoo Lights…

And Santa…