Taquitos

By Stephanie

So life is a little crazy around my house.  I needed something quick and easy.  I saw something on pinterest, and just went for it!  SO YUMMY!  I could even adapt it for Avery’s restrictions.  You can roll them up and freeze them before you cook (or do that with half for another night).  They went fast at my house.  I paired them with a salad and some bottled salsa and it was a super great dinner! 

You can totally substitute the chicken with turkey, pork or beef.  Just use what ya have.

 

Baked Taquitos

12 medium sized flour tortillas (again, use what you have)

2 cups chicken-cooked and shredded (I had a Costco rotisserie chicken that I just pulled the meat off)

1 8 oz package of cream cheese, room temp.

1 can chopped green chilies

1 cup shredded cheese (I love monetary jack, but cheddar or a blend will work)

Turn oven onto 425 degrees.  Spray non-stick cooking spray into large cookie sheet.  Mix cream cheese, green chilies, chicken and cheese together until mixed.  Take 2 tbsp. of filling and put along one side of the tortilla.  Roll tortilla from filling end.  Roll tightly.  Set seam side down on cookie sheet.  Repeat until all are done.  Spray with cooking spray.  Put in the oven for 20-30 minutes.  Check after 20 minutes.  They are done when golden and edges are crisp. 

 

Wishes and Growth

by Stephanie

We found out on Wed. that Avery qualifies for Make-A-Wish.  Really?  I mean we are excited.  She gets a wish!  On the other hand, I have a kids that is sick enough to get a wish.  It kind of takes your breath away.  I’m grateful that they have this program.  But I never thought we would be a part of it. 

At first she wanted to meet Salina Gomez.  But now she is thinking about Disneyworld.  When she decides, we will let you know.

We also met with Endocrine this week.  I was concerned about her growth.  Her sister (that is 22 months younger, but expected to be taller) has almost caught up with her.  The doctor confirmed what I thought.  She probably needs some growth hormones.  However, we can’t do anything until she is done with chemo.  In a year.  So, something else to look forward to at the end of the year.  (It just means we are no where near being done with doctors, even in a year). 

Avery also is still suppose to get Hydrocortisone if she is sick, however the steroid she is on, dexamethazone is in the same family.  So it would be overkill to give her hydrocortisone at this point.  It also makes it impossible to test at this point. 

She is also having to pee a lot.  It could be the water and steroids.  It also could mean that she could be diabetic.  They are watching her close.  She does have a cousin (my brother’s daughter, Sadie) who has type 1 diabetes. 

She has gained significant weight.  Like 6 pounds in two weeks.  This is all to the extremely high dose of steroids.  Most or all of that is water.  Her cheeks look like they did when she was a baby.  But the doctor assured me that once we are able to take her off, it will all disappear.  It does make her hungry, very hungry.  Especially for salty foods which adds to the water retention.  So we are trying to cut those out completely.  And as of Monday she is back to a normal diet.  She is VERY excited. 

I know it all gets a bit overwhelming, it is a lot to take in.  My mom went home today (cry, sniffle).  It’s been great having both her and my mother-in-law over the last three weeks.  It’s just nice to have that extra body for reading stories to the other girls, dishes (my kitchen hasn’t been this clean in months), retail therapy and just for the emotional support. 

Foods that don’t mix with meds

By Stephanie

Avery is doing fine.  She didn’t go to school the last few days because she is sick to her stomach.  But that is actually ok with me since there is whooping cough and other icky things going around.  They sent seven kids home today sick.  

And she has to take her steroid during the day.  It’s easier if she is already home. 

It does take a toll on her school work, but her teacher is great and we are working that out. 

The other big thing is what she can eat.  There is one med that doesn’t mix with a lot of foods.  The reaction is dangerously high blood pressure.  That was enough to make sure she doesn’t eat any of these foods. 

Here is an idea (I haven’ listed everything)

chocolate

cheese (except cream cheese, cottage cheese and ricotta)

bananas

raspberries

spinach

lentils, fava beans, lima beans

yogurt

buttermilk

sour cream

soy sauce

I don’t know about you, but I use cheese a LOT!  And it cuts out many desserts.  My mother-in-law was here and wanted to take the kids to Dairy Queen.   Blizzards are buy one get one for $.99.  We had to scour to find one that didn’t have chocolate.   There was a strawberry cheesequake flavor was her only option.  So it kind of sucks.  But its better than being blind or have a stroke or heart attach at 9. 

C Words

By Stephanie

This may sound really dumb, but I read somewhere while researching treatments for Avery that her tumor is cancer.  The “C” word.  So today I asked…is this considered cancer?  In some circles, yes.  In others, no.  I know…clear as mud.

Our next C word is Chemo.  I have a shelf FULL of meds.  I spent hours training and going over the side effects.  Too much to put in one post.  But here is her list of meds and kind of her regimen. 

The first three days are round the clock of three different meds. Literally,at least every 6 hours she gets something.   Thioguanine, Procarbazine and Lomustine.  They are all pills.  They told us to wear gloves when handling them…scary.  Then nothing from day 4 to day 13.  Then on day 14 we go to Children’s for her IV med (through her port).  It’s called Vincristine.   Nothing on days 15-27.  Then other dose of Vincristine on day 28.  Nothing on day 29-42.  Then we start all over.  We repeat this for a year. 

There are other meds like anti-nausea meds and her regular meds (seizure and thyroid stuff) that she has been on.  

Yes, it’s a bit overwhelming.  I am SO lucky to be a stay at home mom.  That I CAN be there to run meds to school twice a day.  Or that if she gets a fever I can run her to the hospital.  I know that is such a blessing for all of us.  I am so grateful every day that I am married to a great man that supports our family.    

Overwhelmed

By Stephanie

  As you can imagine, both Avery and I are tired, both mentally and physically.  She had a cough last week, that is back and has a slight fever…figures.

We got home last night, about 7pm.  They made an appointment with the Cancer Clinic at University of Washington (which is right by Children’s) for radiation.

We met with the Radiation Oncologist for over an hour to go over all pros and cons of radiation here.  Proton beam radiation still looks like a possible option. 

But honestly…it isn’t great.  It’s actually more daunting than anything we have done so far. 

Pros

There is an 80% chance the tumor will stop growing or shrink

There is a good shot that she could keep the sight she has or possibly regain what she had in October. (she has very little so she doesn’t have much to loose) 

She could start treatment Thursday (she is actually already scheduled)

Cons

Her pituitary gland would most likely be destroyed.  That means growth hormones, thyroid meds, hydrocortisone for life and a high possibility of infertility. 

20% chance it does nothing to the tumor.

Neuro-cognitive damage.  Or other words, damage to her learning function.  This might be less with proton beam, we are looking into it.  It varies for each person, there is no way to know how much this could or would effect her.

She will have to have a dose every day (Monday thru Friday) at U of W in Seattle for a month.  Lots of driving. 

Headaches and nausea

Con’s of proton beam

Proton beam, even if it’s a better choice is probably not covered by our insurance.

We would have to go to Houston for 7-8 weeks.

We would probably need to leave tomorrow night or Thursday morning.

The expense.

 

As you can see it’s a tough choice.  On one side her sight (what’s left) on the other years of treatment and meds.  And that’s what we know of.  We meet with the doctors late afternoon tomorrow.  We will let you know.

Thank you for all the prayers and support.  It really helps. 

Again if anyone would like to donate, we are certainly thankful. 

More News About Avery

Stephanie is in the hospital with Avery and she has asked me to update you with the latest news. On Saturday, Avery's eyesight got worse, if you can believe it! So, they went to the ER, where, after giving her lots of steroids, Avery's eyesight was stabilized. They kept her at the hospital, with the idea that as soon as the ophthalmology techs we in on Monday, they would check Avery's condition and take the necessary measurements so they would have an accurate baseline to better follow up on her condition after the surgery.
This morning after further testing and examination, the doctors believe that the tumor has embedded itself in her optic nerve and to do surgery would cause her to lose all of her eyesight. So, radiation is the next best option. Ideally, proton radiation is best, but because her eyesight has deteriorated so rapidly, they feel there is too much risk to wait for the time it takes to schedule such a treatment. So, traditional therapy will begin tonight or tomorrow.
This is an outpatient treatment and so Stephanie and Avery will be able to go home between treatments, but will have very different challenges from the previous brain surgery. Unfortunately, we are only beginning to realize some of those. The first is that Avery will most likely lose all of her pituitary gland. The others will be forthcoming in the next little while. Stephanie said she has more questions than answers at this point and I know she would appreciate your prayers.

Moments That Change Your Life

By Stephanie

There are the moments that change your life.  We have had a few of those lately.   I also had one about six years ago.  We were living in Idaho and decided to take the kids to Disneyland.  My youngest sister Andrea came with us.  All the kids had the flu during some part of the trip.  So when we got home, I wasn’t surprised to get the flu.  Except it wasn’t going away.

After about three weeks of the flu, my friend was joking and said “you aren’t pregnant are you.”  “Oh no,” I replied confident.  Then I started thinking, when was my last period?  I later took a pregnancy test, and we now have our last one Hallie Dawn.  I can’t image my life with out her.  She is our comic relief.  She says unexpected things (yes, even cursing) that we try not to laugh at.  She is really fun for my husband to mess with. 

Now on to more recent moments. 

You know Avery’s sight as diminished.  But it still takes my breath away to realize how much.  Sit or stand 3 feet away from someone and focus on their nose.  Avery can see their eyes, nose and mouth.  THAT”S IT FOLKS!  Literally.  It’s hard to even make your hands have a small enough holes with your hands to look through that resembles her vision.   She had more like a McDonald’s straw’s worth before.  Now it’s like those straws you use for stirring coffee.  Teeny tiny.  They don’t expect any improvement.  We are just trying to save what little bit she has.  Hard to imagine how she is functioning so well with that little sight. You can watch her, she gets around like any other kid.  Honestly.  You can’t tell in any way that she can’t see.  But if she looses any more, she will be blind. 

She goes in Wednesday for all her pre-op stuff.  And then we have to be back Thursday at 6 am.  That means we have to leave here by 4:30am.  If her vision gets any worse (it’s hard to comprehend that) I have the neurosurgeons cell phone number, we are to call immediately and get her to the hospital.  They will do surgery the minute I get there.  If that happens.  We are hoping we make it until next week.