On the Road Again

By Stephanie

Okay, so this has been a VERY long week and I haven't accomplished nearly what needs to be done.
It started out on June 14th when they did a lumbar puncture (aka spinal tap) on Avery hand found the pressure high so they put in the shunt.  Things were going pretty well, just one night in the hospital and we came home on Friday....only to return on Saturday because she had a fever over 101.  Anytime a chemo patient has a fever over 101, you take them to the ER.  They check the blood to see if they are low on anything.  She was low on red blood cells. So they admitted her. Red blood has to be given VERY slowly.  So we were there overnight.  She did great and we came home Sunday afternoon.  Monday was good too (my sister Amy came to visit, HOORAY!).  But Tuesdays she got another fever.  I took her BACK to Seattle.  When we were in the ER we noticed she had a rash on her back and shoulders.  They did all her blood work again, and she was good.  So why the fever?  Probably a virus. They were worried the shunt had an infection.  That would have been BAD.  Because they take it completely out and put a new one in.  We did NOT want that.  NO way!!  She was also shaking a lot.  It looked like she had Parkinson's it was so bad.  
After three cultures, three rounds of antibiotics and four nights in the hospital, they really didn't have any more answers than when we came in.  But she is doing much better.  Not 100% normal.  She did sleep til noon today and is eating super small portions.  But she is looking much more like herself and the shaking is mostly gone.  I'll take it at this point.  


My sister was awesome and totally took care of my other three kids and did some packing for me.....yep Chris has been in Vegas since June 7th and missed all this fun.  
  
We do MAJOR packing tomorrow, load up Tues, Clean Wed and leave Thursday morning.  As long as there are no more medical issues to address.  

Chaos

By Stephanie

So we spent Saturday night in the hospital.  She had a fever.  If a chemo patient has a fever over 101, they go to the hospital.  Her red blood cells where low so they gave her a transfusion.  We had to spend the night.  Thanks to amazing friends, the other three were taken care of.

Here is some pics of her cool new hair cut and new incisions.  She can’t go swimming for at least four weeks.  She is SUPER bummed about that.  But at least we are moving somewhere that you get more than two weeks of warm weather for swimming. 

Were were going to shave the other side, but she has a kind of Willow Smith/Rianna look going on.  So I think we are going to leave it. And yes, she is still puffy from the steroids.  But we go down another dose this week.  About 20 more days and she will be off the steroids.  Then her body can start to get rid of the water.

I have LOTS of packing to do…so the chaos of my house continues. 

Oh the pressure

So her pressure of the fluid was 32.  Normal is 20.  Way too high.  They are putting in a shunt right now.  I will post more on what that is and post pics when she is out (in about an hour)

Thanks for all the prayers and donations.  It really means a lot!

Roller Coaster

By Stephanie

  No I do not mean the kind that we rode in Florida.  I am taking about the last three days.  Just when I think we are “stable” something happens to show me we are NOT. 

Monday Avery had an MRI and OCT(this is what measures the optic nerve) scheduled.  As we were getting her IV out after her MRI, I got a call from the hospital number.  It was the nurse pract., Cori,  from oncology. 

“Where are you?”

“Um…downstairs.”

“Good.  Don’t leave.”

“I wasn’t planning on it.  We were just going to get Avery a snack before we headed to optho.”

“Don’t let her eat.”

Then there was some blah blah blah…surgery.  That’s what I heard.  Only the last word…surgery. 

   Apparently, her front ventricles, little butterfly looking pockets in the front of your brain that hold fluid, but also have the fluid flow through, looked enlarged.  And they were concerned.  So we went to optho.  Everything looks stable (YAY).  But her vision is a bit worse (seriously…I know). 

  We went and they had the nurse pract. from Neuro-surgery come and get us.  Then we waited (while Avery was STARVING..just ask her) for about 40 minutes until the dr.s decided we could go home.  They said watch her.  I asked what to watch for specifically: headaches, nausea and tired. 

Ummm.  She is a CEMO patient.  She is ALWAYS tired, nauseous and has headaches. 

They added her back to tumor board today (again… LOVE them).  They decided to do a spinal tap. This will tell us if the pressure is high enough to put in a shunt.  If so, they will do that immediately while she is still under.  If not, we will go back up on the steroids and go down VERY slowly this time. 

If they put in a shunt she will have to stay the night.  They will watch her for infection and it IS in the brain! 

We will let you know…….

Make a wish day 2

By Stephanie

SO…As I am suppose to be packing…but really I am sewing (pics coming), I thought I had better give you at least a few more days of our trip. 

Day 2 was at Epcot.  There were a few reasons for this. 

#1 Magic Kingdom is crazy busy on Mondays.  If you saw the line for the monorail to MK, that day you would know this is truly the case.  But it was super short to Epcot.

#2 Was Avery had requested a princess meal (SUPER expensive but did come with pics).  We decided to do a late lunch.  It was cheaper than dinner and for us it was about our normal time to eat.  Being three hours off the first day actually had an advantage for us.  Nathan wasn’t thrilled of course.  It did involve food, so he didn’t complain too much. 

I also learned some things about my kids eating habits. 

Nathan wants quantity not quality.

Avery is SUPER picky, like her dad.  If she doesn’t like it, she won’t eat it, even if she is starving. 

Payton will always pick the healthy choice. (She pick pistachios recently when Chris took them to the gas station for treats.  Really?  All those candies and she picks nuts?)

Hallie will always pick the item with the most carbs, preferably in straight sugar form and she doesn’t really eat meals, just snacks, all the time, again like her dad.  For one breakfast she picked the chocolate pancake with chocolate chips and whip cream.  She ate all the whip cream and said she was done.

 

 

 

This is from the Canadian Pavilion.  By the end of the day Payton and Hallie were WORN out!

 

Technorati Tags: Make a wish,Make-a-wish,disneyworld,florida

Busy…

By Stephanie

I know we are getting to that time of year when kids get out of school, the weather is warm and we would all rather be relaxing. 

  You would think that is why I haven’t posted in over a week…..

But you would be wrong.

My kids are still in school until the 20th of JUNE! stupid snow days.

The weather here still makes me want to make soup and stay inside wearing sweaters instead of shorts and cute wedge sandals. 

But we have been busy….packing. 

Yep we are MOVING!  Back to Vegas baby.  And this time with a child in the middle of chemo.   I have moved us several times across state lines, six to be exact.  But NEVER with a kid that had medical issues.  So last week was researching and getting referrals for doctors in Vegas. 

It’s harder than here.  At Children’s in Seattle, it’s a one stop shop.  All the doctors she needs are in one place.  And they share her file.  So there is no miscommunication between departments.  It’s amazing. 

We won’t have that there.  But we will have friends, family and loads of vitamin D. 

Speaking of Vitamin D, we got our Disney pics.  Here are just a few.  I will do the other posts of our day as soon as I can reformat the pics off the DVD they gave me.  My computer doesn’t read DVD’s.  You can see their darling outfits!  These aprons worked great! Thanks to everyone who contributed.  They were perfect.

And don’t judge my hair. I thought I had great products for humidity.  Obviously I was mistaken.