2 days to go!

Molly sniffed out today's surprise - special lollipops for the airplane!

3 days to go!

Today's surprise ~ Tinkerbell, Princess, and Cars Tattoos!

4 days to go!

Today's surpirse was cool Tinkerbell and Princess stick on earrings and rings for the girls and Lightening McQueen racing bands for Max.  Our backpacks our stocked full of surprises now, Mommy is having a hard time keeping them hidden since they aren't allowed to play with anything until our flight.

Anticipation is building!

5 days to go!

Today's surprise was gummy Cars, Princesses, and Dora's!

6 days to go!

Today's Make-A-Wish countdown surprise was disney stickers in all their favorite characters.  Mom and Dad got woken up pretty early this morning with very excited kids reminding us that we had a gift to open and only 6 days left!!

7 days to go!

The big countdown begins! Only 7 days to go.  Here is the adorable countdown board that Janine our Make-A-Wish Volunteer made for us to help the kids understand how long until we leave.  Each day the kids get to open a package. If you can believe it we have twins that will wake up every morning wondering if today is the big day.   7 days in there minds feel like an eternity but hopefully a visual reminder will help all of us control our excitement. 

Make-A-Wish Sendoff Party!

Only one week to go! Make-A-Wish and Red Robin joined
forces tonight to help us get excited and send the family off in style with a great dinner party.

With customized backpacks filled with toys and goodies for our plane ride awaiting us as we arrived. We were quickly greeted by lots of pictures and staff of Red Robin presenting Max with his own staff hat filled with pins and his own name badge and a Red Robin super hero cape, Red also made a grand appearance to top it off!   Max had no idea what to think with so much excitement all around him.  We enjoyed a yummy cake and were presented with a large framed picture of our party and a photo album filled with pictures of our evening courtesy of Red Robin. 

 We had a great meal with our Make-A-Wish volunteers as we got to discuss all our last minute details, I have a feeling we are in for some exciting surprises ahead!



Couldn't fit all the balloons in our car, although it didn't seem to bother the kids. =)

Are you as excited as we are? 
Stay tuned for the countdown!

Weight Gain!

Check out this little belly that has developed!   I don't know many that get excited to gain weight but we are!  In the last month since we have finished the last round of chemo Max has been able to gain a whole kilogram!!    No height yet, but a little progress is very exciting.   We were able to finally get Max's supplements covered by insurance within the last couple weeks and the dietician had bumped him up 3-4 boost or pediasures every day.  Luckily he enjoys them and we even found a brand that comes in a little juice box that makes it easier for him to drink when we are away from home.  They were costing us about about $2 a piece before and now that we were able to get our insurance on board our new company is charging our insurance $550 a month just for his drinks. Since he has had a failure to thrive diagnosis for over a year now it was easier for us to prove to insurance that is was better for them to cover the supplements instead of having to cover G-Tube supplies. Turns out Max needs massive amounts of calories to make any progress in maintaining or gaining weight.  We are up to about 3000 calories day in order to make any movement. This is great news and gets us even farther way from our tube cut off. Woohoo!

May Infusion - IVIG

May's infusion started out a little shaky after we got our labs drawn  and his port was accessed for the infusion we somehow lost the little cap that keeps germs and bacteria from directly accessing his blood stream.  I have no idea how we lost it or for how long it was off, but the hem/onc staff was pretty concerned about this.  They became even more careful to watch for fevers today.  We would appreciate your prayers that there was no germs that made its way into his little body during the time the cap was left off.  They do such a good job sanitizing everything in the hem/onc unit but who knows what kind of bug could be lurking around the hospital.
We got to have our favorite male nurse, Aaron, today and between Aaron and the Oncology pharmacist we were able to come up with a rate that minimized the nausea, yet got us finished within 7 hours.   As soon as the meds got turned on it was hard to get a smile from him, but luckily his cool new semi truck/matchbox car racer kept him busy most of the day and provided much excitement amidst a yucky infusion.

We learned recently that there is a national shortage of the IVIG drug that Max has used. The hospital has made the decision to switch brands and hopefully this won't affect us, but obviously the hospital is trying to be diligent in their supply and making sure it is reserved for the worst cases. We are discussing the possibility of weaning him off of the IVIG soon (after discussion and sign off with all our team members).  We are a little nervous to do any more weaning when we have so many other fluxuating drugs in play and this has been the most consistent drug offering the least amount of long term side effects. Obviously if Max catches a virus or is in contact with a nasty bug we will need to get in for an emergency dose, but usually the antibodies can last in his body for up to 2 months and since we have been getting every month it might be okay to stretch it out a little. We are awaiting comment from our Boston Doctor whose wife recently gave birth to twins, so we of all people are happy to give him a little time off.  =)

Stronger

In case you didn't catch this on the news last night or on facebook, here is an inspirational video by Chris, a Leukemia patient at Seattle Children's.  Here are just a few faces of the kids we get to run into in our adventures on the hem/onc floor at Seattle Children's,.. Several fun nurses too.