bs, sbb, nb, oa, ss, dirc, shd, sdp, hp3 cr1d1 ivig1

Without continuing to read can you decipher my title?  This is what we have been up to since we last left you at Jackson's biopsy.  Bone Scans, Sammi's Basketball Banquet, New Beginnings, Oncology Appointment, Swallow Study, Destination Imagination Regional Competition, Sadie Hawkins Dance, Sammi Drivers Permit, Histo part 3 Chemo Round 1 Day 1 IVIG 1.  If you got that all correct let me know~you deserve some sort of prize!

Bone Scan

How do you spend your bone scans?  Jackson recommends watching Nacho Libre during bone scans.

 Sammi with her coach, "Mamma G",  aka Natalie Gilbert.  Mamma G said Sammi was her "details" girl.  Not basketball details, but clothing, hair and makeup details.  Every team needs one of those right?!  After this banquet I hurried over to Mom's for the baby shower "I" was throwing for Polly Carlson.  Since our Valentines' Day news Mom, Courtney, Lisa and Katie had stepped up and handled it for me, Thank you ladies. The next night was New Beginnings for the Young Women and Sierra was invited because she turns 12 this year---man oh man was she excited, I took a picture, just left that camera at home---Sammi and Sierra looked adorable, trust me!  On Thursday it was back to Seattle for the meeting with the Oncologists, and the swallow study.  Jackson was super emotional when they confirmed he would be doing a year of chemo again.  Same as last time 4 days of chemo every 28 days. Adding IVIG, look it up on wikipedia it's pretty interesting, takes 1000 donors to make one IV bag of IVIG.   I asked Jax if he just hadn't believed it was really happening till then, or if it was all the dire warnings from the doctor that we would end up needing to stay in Seattle this tim.  He told me that he had a couple of dreams that the Doctors told him it was a miracle but, that there was no signs of histio and he could just go home.  :(  Poor kid thought it was maybe going to turn out that way.  I told him miracles were happening and would continue to happen, we just had to accept that they may not be the ones we think we want.  Broke my heart.  My Mom came with me and Carter was an unexpected guest too.  That morning he just fell apart, Michael had been gone since Monday, I was gone Monday and Tuesday in Seattle with Jackson then home to ball banquets, baby showers, work the next day and mutual that night, and I think he had reached his orphan feeling limit.  He was good comic relief and he and Jax had fun with each other at dinner and in the car.  Already we have been helped with food, babysitting, room makeover surprises, little gifts, help with hotel costs, you name it---we are so blessed.

Sierra at the Destination Imagination Competition.  It was a long day for us, 6:30 am till 7:30 pm.  So much for Saturday!!  I got to help with the competition and it was interesting.  "Highly Capable" children can be "Highly Unusual" too!!  Luckily the ones from Royal have good old fashioned "farm sense" to go along with their highly capable brains.

 Jackson was asked to a girl ask guy "Sadie Hawkins" dance.  Charisty Christensen was his date, and here Jax and Tanner show why they shouldn't be allowed to pose for their own pictures.

 The "boys/men", Carter Allred, Tanner Christensen, Porter Roylance, Austin Roylance, and Jackson Noftle (nice pose Jax?) We can thank Maria Allred and Nancy Christensen for all these dance pictures since I was in Spokane being highly UN-capable of taking pictures in Royal at the same time.

The girls masked.....left to right, Charisty Christensen, Morgan Small, Seila Jenks, Hailey Worsham, and Becca Lee.  Good looking crew--not too brag or anything!

Charisty was smart enough to laugh at Jackson's jokes apparently!

On Monday I was in Seattle with Jax and Michael  for Jackson's port placement surgery.  On Tuesday I was in a car with Sammi driving me down Dodson road after getting her drivers permit.  I had my heart in my throat both days!! 

Jackson has discovered that Chemo is better if paired with Chocolate Cake.

                                                                    Before Port...

After Port

Lindsey Christensen let Matt Hadley know Jax had to go back in Chemo.  Matt called BYU (actually I don't know who he called!!) and Tuesday night brought a Y flag signed by the BYU football team and a card for Jackson with a nice go get 'em message from Bronco Mendenhall.  Pretty fun, Lindsey and Matt stayed and visited and had us all laughing for a little over an hour-so nice for Jax to forget his aches and pains from surgery the day before.  Matt has been very kind to Jackson---we look forward to seeing him play at BYU.

I thought I had a picture of Jackson's room makeover, but I can't find it.  But here is one very special wall, and a glimpse of the posters the cub scouts made Jackson at their pack meeting!  Last week when were getting the biopsy done Courtney & Matt, Katie Christensen, Nancy Grant, Ashlee & Tyler Frank, Chriss Allred, and Jolyn Farrer.  Hope I didn't miss anyone.  They did a great job, and it was a super fun surprise.  The poster behind Jax has the neatest saying, I will have to put it up when I get home and can copy it down.  When Michael got back from Texas and read it he started to cry.  In almost 19 years of marriage he has cried only a handful of times, most of them sports related!  But I admit to being teary when I read it too.  Courtney is determined to make our house a soft place for Jax to land, and I love her for it.

Histio part 3 Chemo Round 1 Day1 (47 more to go)

The familiar Cytarabine or ARA-C, more "serious" dose this time around.  1 hour infusion because it is paired with 700 mls of saline.  This is done first before the IVIG.

The new "player" IVIG we got the Gammagard brand of IVIG which doesn't have to be infused as slowly and the nurse told us they see less side effects with this brand---I'll take her word for it.  He was premedicated with tylenol and benadryl, about 30 minutes before they started the IVIG.  His blood pressure was taken every 15 min for th 2.5 hours that they infused it.  The lowest it got was 106/53,  if I remember right.  So that first infustion of IVIG was fine, no hives, no rashes all good.  It wasn't until we left infusion to walk back to the car that the headache hit.  Jax described it as a "killer" headache.  One oxycodone seems to have handled it so far.  He has eaten dinner and done well this evening.

 His blood counts were great of course today and the next 3 days ought to change all of that.  But just for information's sake I'll put his counts down.

White Blood Count 5.2

Platelet Count 306

Hematocrit 39.5

Absolute Nutrophil Count 2720

 

Here we go....