Today was a good day for our family…first off, this is what I woke up to this morning:

Braden first (since he gets up so darn early!)

And then Jackers soon to follow:

How can the day be bad when they are so darn happy!  We played around the house and I attempted to do some cleaning, but it’s a little hard to do when the boys harldly let me sit much less take time to clean.  They were having a good day running after each other and playing hide-and-g0-seek-tag…Jack’s favorite game.  Braden decided to play with one of Jack’s many medical kits that comes with Dr glasses and this is what we got from it…

Grandma Jean called the other day to ask if we would come over tonight to spend some time with the family that were visiting so we all went.  Nikki spent the day moving, but after that was done for the day we all got ready and headed over to her house.  Jack insisted on wearing his Luigi costume and tie over to her house.  He is so funny.  He fell asleep on the way there which usually means he will be a bit cranky when we wake him up but he was anything but cranky.  This kid was on fire tonight!  He was making everyone laugh and was pulling one liners all night.  He is the best.  Both boys had a great time and we did too.  It means a lot to Zac to be able to spend time with his Grandma so it was nice to be able to go over to her house tonight.

Tomorrow we will be taking the boys for haircuts and running errands as well as getting Nikki and Shawn moved in to their new house.  Monday is clinic day  so wish us luck with that and hope that we can set some dates for Jack’s next scans!

Here is a picture of Jack to end this post in his wonderful outfit

Today has been a day that will forever lay heavy on my heart.  Today is the 3 year anniversary of Zac’s moms passing and that is very hard.  Zac and his mom had such a special bond and it is so very hard not having her here while we go through all of this.  His mom was an angel.  She loved her boys and would do anything in the world for them.  I know for a fact that she is up there with my Grandpa taking care of us and making sure that Jack fights this battle with as much strength as he can.  I know that she is holding Zac up and making sure that he gets through all of this as best he can.  I also know that we miss her and we wish she was here to walk this battle with us.  We love you Mary Lou and miss you more than you will ever know.

Today has also been a day of heartache.  Like we said earlier today, our beautiful Ronan was told by his Dr’s at CHOP that he would be returning to Phoenix and no longer eligible for treatment.  I don’t get it.  I don’t understand how this has happened.  Ronan is a fighter.  Ronan is a strong and beautiful little boy that has so much fight in him that he could just very well prove them wrong.  His story has been heard by thousands and his family has such a strong support system.  Jack and him have never been able to play together, but I was explaining things to Jack tonight and I told him that it would be great if we could have Ronan and his mom over to play one day and he said, “Or…..maybe…we could go to their house and ring their door and see if we can go in and play with them! ”  I told him that that may happen and that I know Ronan has so many Star Wars toys that it would be unreal and he was all excited…hopefully we can make that happen.  These two boys are one day apart, born at the same hospital…I have always wondered if Maya and Woody (Ronan’s parents) were the couple that I saw in the hallway when I was making my rounds before Jack as born.  I was walking the halls with my sister Nikki, my sister-in-law, Amy, and my mother-in-law, Mary Lou, when I saw another couple in the halls.  She was leaning against the wall and he as rubbing her back.  For whatever reason, I will never forget them. I wonder if it was Maya and Woody.  Funny part is that Nikki remembers them too.  They have been through so much in the past 8 months and will go through more in the months to come.  Please send your love to them…they would appreciate it.

This gives me even more fuel to the fire to fight for research for this awful disease.  Neuroblastoma is a nasty, mean, sneaky beast that is not known by anyone.  We need to raise money for research.  We need to find a cure for this.  This is not fair.  This is not right.  No child should suffer like this.  No parent should suffer like this.  Please help us with this.  Please help us raise awareness.  We are determined to do something and we will not give up on this fight…ever.  I hope you all join in the fight.

Just a couple of updates about 2 of our Neuroblastoma friends…

McKenna had her final scans a couple of weeks ago for the end of her treatment.  If you will remember, she is about a month ahead of Jack with her treatment so we have been following her through everything.  They found out in her scans that she still has a small part of her main tumor left in her belly but it has shrank from the previous scans.  It lit up and showed small activity, but it is confusing because Neuroblastoma can show up even if it is “not real” or “dead”.  The great news is that nothing else has popped up anywhere so this is great knowing that nothing has spread for her.  She may be going to NY to have that last part of her tumor taken out just to be on the safe side.  They will find out more next week…please keep McKenna in your prayers!!

We have talked about Ronan on here many times.  He holds a special place in our hearts since he is so close to Jack and share such similarities.  Ronan went out to Philadelphia to see if they could do MIBG treatment because Sloan Kettering told them this his cancer was spreading with their treatment.  I found out late last night that Phili has sent Ronan back here to Phoenix.  He cancer has spread too much for the treatment.  My heart is breaking for them.  I am unsure of what happens next for this family but I do know that they need a lot of prayer and support right now.  They are very fortunate to be surrounded with a lot of love and a lot of family and friends but extra prayers never hurt anyone.  Please pray for Ronan…he still has a lot of fight left in his little body.  Please also pray for his mom, dad, and twin brothers….

We will update more later…

We have had so long off from the hospital and now the nerves are starting to set in as we get ready for the hospital next week.  Jack only has a clinic appointment to check his levels and get his last prescription for Accutane (thank God) but knowing that we are coming to and end is scary….and exciting.  Jack has come so far and there are times when I look back through all of the pictures of this past year and hardly believe all that he has gone through.  This little boy is one tough cookie.  He has never stopped fighting.  He has always put on a strong face and pushed through….even though I really dislike that statement…”push through”…that is something that we heard a lot when he was going through Immunotherapy and it bothered me.  I got it…I knew what the Dr’s were saying, but can you imagine how hard it is to watch your child “push through”?  Ironic part is that it wasn’t Jack that was having a hard time (mentally) it was always me.  Jack was also telling us to push through, to move on to the next level and to get him through this year of treatment and get it over with.  This little boy is ready for life…school, play dates, sports, building a new computer program for Apple…this boy and do it all.

Not that the time has come, I am more nervous than I was in the beginning.  So Monday will come and we will hopefully find out our scan dates.  Dr Eshun knows I am a planner and I would rather have the dates sooner than later, so hopefully we will find out then.  I also have a few questions that I have written down for the Dr so I am looking forward to getting those answered.  So the plan for the month…Dr’s appt, Accutane, scans (which will take 2 days), and then the results day.  Oh, and of course Jack’s 4th birthday!  4 going on 24 to be honest!  His birthday is the 11th of May…of course it is the 11th, that’s his number.  The anxiety is building, but the positive attitude is staying.  Jack has been doing so great that we know his scans will be good.  If for some reason, there is something, we will take it on and move forward once again.  But for now…keep the positive thoughts coming…keep the prayers coming.  Jack still has a lot of fighting to do and we do too as a family.

Thank you so very much for taking the time to follow Jack on his journey.  Please continue to follow Jack and send your prayers his way.  It is amazing what happens with so many people come together…….

With Hope Always….

Happy Easter!!!

Today we woke up early…very early.  Braden has been waking up by 5:00 AM and it is really exhausting, but it is what it is!  I went in and got him up and ready and then woke up Zac to watch Brady boy while I went downstairs to hide all the eggs and baskets for the boys before Jack woke up.  This year was very exciting since Jack is in such a different place than he as last year and Braden has also grown up so much.  They came down and hunted for eggs and Jack not only found his basket, but he also found Braden’s and Zac’s.

Braden:

Braden and his basket:

After we were all done with the egg and basket hunt, Nikki and I got ready and headed off to church.  Everyone is still feeling a bit under the weather, but it was important to me that I made it to church this year.  We didn’t make it last year, we haven’t made it in this past year at all and Easter is a wonderful time to start over and get everything back in order.  We have been praying so hard this year for Jack and our family and it felt good to be able to go to church and say “thank you” for all that we have been given

We came back to the house and had a very  non typical Easter dinner.  We decided to cook out instead of make a while big meal.  It all worked out well for us.  Shawn went and got a new game for the backyard so we played that and had a wonderful afternoon outside.  We finally were able to get Jack’s Buzz Lightyear kite up and flying and he was so happy about that.  Nikki and I tried for about 30 minutes to get the kite up but Zac tried for about 2 minutes and in Jack ran yelling how Daddy made the kite fly!

The kite!

The rest of our day was spend playing games outside, eating, and enjoying the day.  All in all…today was a great day.  We have a pretty calm week so that’s good.  I am in major need of getting my house back in order again.  Nikki and Shawn found a new house so they are also moving out this next weekend.  Wht in the world I am going to do without Nikki…not sure.

We have clinic a week from Monday and then we will start 2 weeks of Accutane and then we are done with treatment!!  We will do scans that same week and as long as they are clear, out comes the broviac and we slowly move on on a “normal” life again.  Here are a few more pics from today…

Jackers: