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…

It sure is nice to breath again!!  We are so happy that Jack has beat the odds and again had clear scans.  We hope and pray that this goes on forever!  The day after results Jack had a check up with the Dr’s at PCH.  Since Eshun was in patient this week, we met with “A”.  We talked a lot about the future and long term side effects from treatment and as of now, Jack’s future looks really good.  We will always need to emphasize a healthy diet, no smoking as he gets older, and possibly nothing too straining on his heart as a profession but none of that is something that we wouuldn’t plan on doing anyway.  All went well and we found out that in February when we have scans again, Jack no longer has to do the bone scan which means there will only be one day of anesthesia!  Jack will have a CT without anesthesia one day and then the MIBG the next and that is it!  So exciting that things are getting less and less for him.  We also talked about Jack’s hand that is sometimes colder than the right.  I, of course, took it upon myself to do research before scans and it was either because of new tumor growth in his armpit area or it had to do with his original tumor. “A” assured me that it was the Horners’ that Jack has because of where the tumor was in Jack’s body.  Because of this, Jack only gets flushed and sweats on the right side of the body so it would make sense that when he is running around his left side is cooler than the right.  Thank God!

Jack went back to school on Friday and he was so excited to go!  He said that he would have been sad if there wasn’t any school so we know we made the right choice in his new schooling.  He goes again on Monday and then we have the week off for another Dr’s appointment with the endocrinologist and then of course Thanksgiving!  Hard to believe the holidays are already here!

We will be having a VERY thankful holiday this year and we hope you will too!

I started this post yesterday and didn’t finish it so I will tonight.  The kids were in bed early tonight because Jack will be getting up early to get ready for school tomorrow.  I got an email tonight from a woman who met my dad months ago and he shared Jack’s story and left her a bracelet as he left.  She said her daughter would love one too, so when we ordered kids bracelets he sent one to her.  My Dad never told me this story so when I got the email, I was a bit surprised.  This woman sent me a picture of her daughter wearing Jack’s bracelet with so much pride and her nails were even painted lime green like Jack’s bracelet!  I started crying when I saw the picture.  When you put yourself out there and share your son’s story with the world, you never know who is really listening.  It meant so much to me to get that tonight and to see that there are some wonderful people out there supporting Jack and our fight to raise awareness for Neuroblastoma.  Thank you so much for the email and picture…it meant so much!!

Well we are not even home yet from the hospital and Dr Eshun has already called us to give us the wonderful news that Jack’s scans are totally clear!!! He is NED! We are so excited and so very happy! We get to enjoy another clear scan and breath for a bit!

Thank you for all the prayers and support!!!!!

We are off again for day 2 of scans. The MIBG scan that Jack is having today is the most important as far as Neuroblastoma goes. If there is any active Neuroblastoma in his body, it will light up. Since Jack has NO Neuroblastoma cells in his body, nothing will light up today!

Jacks scans start at 2 so send out some positive thoughts and prayers! Dr Eshun will be calling tonight with results so we will keep you updated!

On out way home! Jack did great! Dr Maze was there as well as our wonderful radiology nurse Angela to help him get through his scans today. Jack was a champ getting his IV in even though he had to be poked 3 times before it worked. He had his CT done while we were waiting for the bone scan without anesthesia and he did wonderful!

Now we are headed home so Jack can eat and get some nutrition in before he is not allowed to eat again tomorrow!

We start at noon tomorrow with the MIBG scan starting at 1:00. Tomorrow is a big day and hopefully we will get results tomorrow night! Thank you for all your support and please keep the prayers coming!!!!