Histio 3 Round 12 day 4 OR Glad Its Not My Job!!

For months Children's hospital has been warning us all that they are implementing a new "way finding" system at the hospital in preparation for opening the new addition to the already ginormous maze of a hospital that it is.  But this trip we could see they were down right serious.  For 13 years we have seen the same, gone to the same "WHALE 6" oncology clinic when we come.  This time we see signs that "times are a changing".

Not Whales, Giraffes, Trains, Balloons, Airplanes and Rockets any more.  Make way for Mountains, Rivers, and Oceans.

There it is side by side--the old and the new.

I can't say I wasn't warned these signs have been up for a couple of months, and guess what Jan. 20, 2013 is TOMORROW.  Just think of it, elevator buttons (floor number are changing for example instead of Whale 6 Oncology is now on Mountain 8 --- and the Bear elevator not the rocket, or you could take the frog to 7 which used to be train 5 see the issues!!)  In fact when we were inpatient with our roomates I was explaining to Hunters parents how to take him to the play room which is on floor 2 down the train elevators. But at that point someone had ripped the paper off and you could see Frog 4 on the play room floor too.  I hope when Jax and I go in tomorrow we can find our way back out!!  When we left today they were taking down all the parking lot signs and changing the floor levels for that too---Massive amount of work.  On our schedule for next months MRI it says to go to Location:  Mountain 8 (on Jan. 20th Balloon 6 becomes Mountain 8) the ortho appt says Ocean 6 (as of Jan. 20th Whale 4 becomes Ocean 6)  Every appointment thats 7 explanations for our easy peezy no chemo day next month!!  Like I said "glad its not my job"  to switch this all over.  But wierd enough all this change makes me sad, its silly but Whale 6 takes care of Jax NOT Mountain 8.  Sorry shouldn't let you all see my crazy like that!!

In the hallway on the floor where Jackson was inpatient they had this picture blown up huge talking about Oncology inpatient ward being moved to the new "building of hope" that has been under construction the last couple of years.  The ironworkers wrote the inpatient patients names on the beams so they could look out their rooms and see their names.  Remember this is months ago when Jackson wasn't inpatient so we know it wasn't for him but.....

Hi Jackson!!

Histio 3 Round 12 Day 3 OR We Are Sprung

Delivery Pizza, something a boy from Royal City knows little about---but what little he knows-he likes!!

I am not doing a great job of taking pictures during this "last" round of chemo.  It might be because I am depressed because it looks like chemo isn't ending after all----testing shows Jackson isn't stable.  So our Oncologist in Seattle and I have talked to Dr. McClain (histio specialist in Houston, TX) and he is recommending we move to another chemo.  I think Jackson is a "lifer" a kid whose disease isn't going to leave him alone (I know some of you are thinking well duh...!!).  So the chemo choices mentioned so far are Gleevec and Clofarabine.  We have an MRI scheduled for Feb. 28, then we will fly down to Houston so Dr. McClain can evaluate Jackson and help us decide the best course of action for his health and future.

In happier news Jackson made his little roommate happy today.  Cutest little guy 4 year old boy named Hunter.  He was just diagnosed Monday, and was admitted Monday about midnight.  Yesterday he had his surgery to get his port placed, Jackson told him how all superheroes have ports (Hunter wears a superman cape all the time) and let Hunter check his port out.  Then we heard Hunter complaining that he wanted strawberries, and blueberries. The cafeteria at the hospital had none.  His Grandma was able to distract him with a transformer book.  But today when we were on a "lunch pass" from the hospital we picked up a transformer toy, some strawberries, and some blueberries and now Jackson is a rock star!!  It's easier than you think to be a rock star, although out of season berries are involved!  Jax was discharged at 4:00 today and although we are looking forward to some real sleep, we will miss that cute little family we shared a room with for 2 days.  It helped me reflect back to recognize how long and encompassing our cancer journey has been with Jackson, I would give anything to keep other little four year olds from cancer.  Yet at the same time it hasn't all been bad in the least.  We have seen the generous, kind, and amazing side of so many people.  We have been served by so many people and we have learned to rely on the Lord, all good things.  In fact just today Bishop Jenks, and Jackson's Young Men President Shane Christensen came to Seattle and took Jackson and I out to lunch.  Busy guys with families, jobs, and church callings taking half their day to lift Jax.  See its not all bad at all.

Extreme Pita

I haven't mentioned this on the blog but we opened a Restaurant--TUESDAY.  We have been wanting to line up some possible job opportunities for Jackson in the future, and Michael has always had the restaurant bug.....so here we are.  I give you  (drum roll please) 

EXTREME PITA

First day the employees were being trained on the "pita line" kinda like a conga line but less bending.

Three willing Guinea pigs

Uncle Paul and Aunt Mona

Nancy and Tiffany in line (for the second time but they swear they were taking these pitas home to their families---but I say there is no shame in eating two own it girls!)

Can you believe it we have a restaurant ---- yeah me either.

Pur Blendz Smoothie Bar is to quote Jackson, "Pure Awesome".

Melanie, her kiddos, and Aunt DeeAnn in line

The Noftle kids look blurry, they must be tired..... because their parents are opening a restaurant instead of getting them to bed on time for the past little while (OK a month but who's counting).

Smoothie, sample, server, Zoe (sells sea shells at the sea shore).  One of more expensive employees, and our most high maintenance.  She wants you to start her showers, wash her dirty clothes, tuck her in bed and read to her at night---what kind of employee does that? 

Babies have sent out the word,  "goo goo gaa gaa"....

That translates into English as....

"try Extreme Pita its the bomb". 

Funny monkey's like extreme pita too.

So do silly monkeys....

and weirdo monkeys.

Why do I post blurry pictures?  Its hard to tell what picture I'm picking when its thumbnail size, I may need an eye doctor appointment.  But the point of this picture is "the Jenks like it --- you should try it --- everyone knows they have impeccable taste".

Speaking of crazy (were we??)---Aftyn says "the blushing berries smoothie is soooo good your face looks like this after every sip".

The teenagers eaves dropped on the babies, and they have put out the word that Extreme Pita is the bomb dot com (they try to be as cool as the babies TRY).

That's right Pepsi products (cry cry sniff sniff) I'll just drink pur blendz

look--over there ( Michael's not so subtle attempt to steal this mans pita)

My cousin Mark and his beautiful women.

Andersen's are big fans (we didn't even have to pay for their endorsement)

Try it---in Kennewick between Costco and the Mall in the Olive Garden Complex.  Call me, I'll hook you up with some coupons!!

First Time For Everything or Histio 3 Round 12 Days 1 & 2

I know its hard to believe but Jackson is at the end of his year long Chemo cycle. This is the 3rd time in his life in Chemo. And yesterday, Jan. 16th, 2013, was the very first time he has been admitted to the hospital. He had finished his chemo and IVIG and the nurse was coming in to flush his line when Jackson got the chills. Then his diastolic pressure jumped up to 99, then our nurse made a phone call and within five minutes of the the chills starting we were on our way to the Emergency room in the hospital. They were afraid he was having an allergic reaction to the IVIG and wanted him down in Emergency in case he started having trouble breathing. He didn't, but he went from high blood pressure to soft blood pressure, going down to 90/30 at one point. Then he spiked a temperature. He never had trouble breathing and they decided it wasn't an allergic reaction, but that he had a bacterial infection which they take VERY seriously when you have a port. So blood cultures were taken and IV antibiotics started and at 1:30 in the morning we moved from the ER to a hospital room on the HEM/ONC floor. (We got to the emergency room at 7:30pm  can someone explain to me why it takes till the middle of the night to move into hospital rooms?)  We woke our poor four year old roommate up moving in, but he forgave us. So here we are....pressures fine, temp fine, but the IV antibiotics are staying put until Friday morning. We had chemo in room today---the nurse called it room service, (not what I would have ordered but whatever) and the same is planned for tomorrow and then, it should be discharge. I won't complain about sleeping in a hotel bed anymore after two nights of a hospital chair!!

Christmas 2012

The House was neglected (good thing its not a living breathing thing I would have killed it long ago), games were played, Holly and her family came to town, and many (ohhhh sooo many) calories were consumed, some of them even by people other than myself.  So basically it was great.  Here I'll show you....