As the post says, we love school so much but we cannot stand the germs!  I know this is very “normal” but really…ughhhh!  Jack came down with this second cold for the year over the weekend it it was pretty uneventful (which is good!).  He did come down with a fever on Sunday and Monday so he had to skip school for a couple of days but he bounced back much faster than his previous colds so that must mean his immunity is back up to par…very exciting!  He did not like staying home from school and was very excited to get back in the swing of things yesterday.  Braden woke up yesterday with the same cold so we are now on lockdown again, but what can you do!

Nikki and I have been planning our trip to LA for the live Stand Up 2 Cancer event and we are so excited!!  I was thinking last night that I haven’t given credit where credit is due.  The amazing photo that you have all seen of Jack leaving his stem cell transplant was taken by my friend, and amazing photographer, Kacey Droz from About Love Studios (www.aboutlovestudio.com).  Kacey and I were best friends back in the day and we had lost touch after we started going to different high schools.  When Jack was about 1 1/2, Nikki, Jack, and I were flying out to CA and we ran into Kacey’s mom at the airport.  It has been so long since we had seen each other but she got Kacey and I back in touch and I was so thankful.  Kacey volunteered to come to the hospital the day Jack got out of transplant to take photos for us because she understood what a big moment it was for us all.  We probably wouldn’t have had such an amazing picture if she wasn’t there that day….not to mention that the second we left the hospital the air went out in our truck and she was there to take us home…thank God!  Thank you Kacey for capturing so many emotions that day!  Love you.

Here are a few more pictures that Kacey took that day…

Just chillin’…waiting to break free!

Jackers standing up for one of the first times in a couple of weeks…hard to believe how small he was

Our wonderful transplant nurse, Katie, unhooking Jack from all of the machines!!  He wasn’t thrilled apparently about something but we were so excited!

Jack hijacking Nikki’s cellphone so he could play with it on the way home.  Yes, we had sanitized it before he took it!

It had been a few weeks since we had seen Braden and he was so big!!!!

Yup, the tears started the second the door opened!  The girls expected him to be walking so the strings were up high and when he came out on his scooter, they all started laughing and cheering for him.  It was so sweet.

This is in the elevator…we had to take a few separate elevators to carry all of our stuff out of the hospital.  PCH treated us so well while we were there as did our amazing family and friends!  He rode that thing all the way to the front of the hospital!

Waiting for the car to pull up…before the air went out!  Jack’s first time outside in so long!

Jackers had his first holiday show last night with school and it was so utterly cute!  Jack’s teacher had all the kids and parents over to her home so the kids could put on a little show for their families and we could all have a little holiday party.  It was such a good time.  Braden and Nikki came with me and it was a nice night all around.  The kids came out and sang 3 songs while doing sign language and it was just too cute for words!  Nikki recorded it so hopefully we will get that uploaded soon so we can share it with you all.  The parents of the children that Jack are in school with are so wonderful too so it was nice to spend some time with them.  I didn’t realize some of them read this blog and it was a good feeling to know that they are supporting us and our mission to raise awareness for Neuroblastoma.

I was just reading through our blog from last year at this time and it is just unreal how much it has changed since then.  Jack was in the hospital at this time going through a very painful round of immunotherapy.  He hit his 100 day post transplant this time last year which was a HUGE accomplishment.  I took both my boys to the grocery store (after he got out of the hospital) for the very first time EVER on December 20, 2010.  I can’t help but get emotional (I know, I am always emotional when it comes to the boys) but it’s true.  I will never really believe that Jack went through all that he did.  We are so very thankful that this Christmas we will be all together again and this time we won’t have to go back to the hospital right after Christmas Day is over with.  This time we get to go to many more places than the grocery store.  I am not nearly as concerned about sanitizing their hands as I used to be.  Of course I still like my kids to be germ free, but I am not a total freak about it anymore because I simply don’t have to be.  The “rules” have gotten a bit more relaxed and so have we.  With each day we are getting a little bit stronger.  Funny that I never realized how low our lives got.  You live in the moment and keep trying to stay strong for the future.  Now that I look back, I still have no idea how Jack got through it.  I have no idea how Zac and I got through it…but whatever the reason, I am thankful.  I am so happy Jack is here and thriving.  I am thrilled Braden is growing at  rapid rate and becoming a very strong and beautiful little boy.  I could go on for hours….but I won’t!  I am just happy right now….

We are still looking for more toys for the kids at PCH, so please let me know if you are interested!  Any donation would be appreciated!!

Well, hello!  It’s been a few days but that is not a bad thing!  Jack is back to his normal self and we really think that all he has now is some allergies which have been cleared up by a little medication.  He is feeling great and back to his old self.  On Friday I got a call from Dr Eshun and we talked for a long time about everything that is going on with us as a whole.  He told me that Jack is going to have a million fevers over his life and I just need to start getting used to it…easier said that done.  He knows that and totally understands.  He really believes that Jack is going to do so well and that is so encouraging.  He said that if we were comfortable he would just give us a call after scans in August to give us results instead of having to come in for an appointment and we are all for that.  We talked about Neuroblastoma as a whole and how the number of patients diagnosed has dramatically increased over the past couple of years.  If they only knew why…awareness, research, and funding.  Without those, we will never know.

So the plan is…this week we will be doing a urine test that we have to take down to PCH for results.  We will know of those by the end of the week or the first week in August.  We will be seeing Dr Eshun the week before scans for a check up and then labs will be drawn while Jack is asleep for scans.  We will be finding out soon what our schedule is for our “1 year post transplant” tests.  We thought life would slow down…not likely!

Over the past few days we have kept busy just by playing, running errands, swimming, and enjoying life.  We went to Hobby Lobby the other day because I am trying to figure out exactly how we want to display all of the beads Jack has collected with Beads of Courage.  Each time Jack went though anything…pokes, tests, hospital stays, clinic appointments, chemo, hair loss…anything he got a certain bead.  He has a ton.  We are trying to figure out how to display them in a way that he will be able to keep forever.  Off we went to the store and I started talking to a lady who works there about what I was wanting to do.  She helped me put it together and then as I was walking away she came towards me, as if we were long lost friends, and gave me a huge hug.  She said, “God bless you and your family and all you have been through.”  It put a smile on my face to know that total strangers care so much about my family.  She was so sweet and I know that she went home thinking of our family and how wonderful the boys are.  I will be going back this week to get more things and will be giving her one of Jack’s cards and let her know that her simple act of kindness reminded me how wonderful people are and that I will never lose hope that we will be able to bring more awareness to this disease.

Anyway, the boys are crazy wild after swimming today and I think it is more wild from being tired so off I go to read some books and put Braden (our little Monster) to bed.

I cannot believe we are already in June.  Do you realize it has been almost 9 months since Jack’s stem cell transplant??  Hard to believe time has passed by so fast…

Jack woke up this morning, and of course Braden and I were already up since Braden wakes up at the crack of dawn, and when he came to the top of the stairs before he came down he yelled, “Hey!  We are one day closer!!!  My countdown is getting sooooo little!!!” The first thing Jack does when he wakes up in the morning is rip one of the countdown rings off and counts how many days are left before the tubes come out.  We got ready and Nikki came to meet us and Jack, Braden, Nikki, and I took off for the hospital this morning for Jack’s EKG and Echo.  We were able to see Jack’s favorite Child Life buddy, Amanda, right when we got there.  Even though it was a quick visit because she was off to a meeting, it was so nice for him to see her.  He has asked about her since the day we left the hospital and it was great running in to her.

Off we went to the appointment.  I was dreading it a little bit because Jack really does not like getting this done.  An Echo and EKG are the most painless of any of the tests that he has had to go through, but he has hated it since the beginning.  Fortunately, we had a wonderful guy who was performing the tests on Jack.  He cracked jokes with Jack and talked to Braden all to distract Jack and keep him happy.  About 20 minutes later, all was done and we were on our way!  Such a short appointment, but a good one.

We came home and after lunch Braden went down for a nap and Jack and I did some work in some of the school books that we got him.  He is doing really well and I think he will catch up fast when he goes to pre-K.  We also had a delivery today of the new bracelets for Jack and all of his supporters!  We will have them for sale soon on the website, but they are so cool!  We got them in large, medium and small sizes for kids.  Jack has been wanting a green bracelet for so long like mommy and daddy so now we have them for not only him, but all of you!  Hopefully we will have it all up and running by next week.  Get a bracelet, wear it, think of Jack and all he has been through and spread the word.  In fact, get one for you and for a friend!

Anyway, all is good here and we will be heading off to bed soon.  So looking forward to Friday morning!!!

Just a quick update…

Jack is doing much better as of today! His swelling is down and he looks like he is pretty much back to normal. He started eating more today, although he did get sick to his stomach a couple of times. His energy level is at 90%. He is not totally back to the normal Jack, but he will be soon.

We were able to get out a couple of times today which was great. We spent a little time at the park this afternoon and just enjoying getting some fresh air. We have yet to start to take down our Christmas decorations, but hopefully we will get to that tomorrow!

We have a clinic appointment tomorrow with Dr Eshun followed by a meeting with the transplant team for his past +100 day check up. We will update you all after we are done…