Ava all tuckered out!

My precious little girl all tuckered out!

Fever, stuffy nose, upset tummy, diarrhea, clinic/labs...just not feeling well and all tuckered out for the night. 

We all hope she is feeling well soon!!!

Now the good news...

Ava & Erik just came home!  This is a first to go to the ER and not have to stay at the hospital for days.

Her labs and vitals were taken and and x-ray was taken of her chest/lungs and it all looked okay - she just may be fighting a little bit of a bug...like a cold or something.  For now we were instructed to work with her fever using Motrin/Tylenol.

Now, we are praying that the fever stays down and that it IS just a simple bug that her body can fight off!!!

She must have an extra special angel sitting on her shoulder this morning...Now, time for a NAP!!!

Spoke too soon!

So, we spoke too soon! Ava is back to the hospital due to a fever (102.5), stuffy nose, croupy cough, glossy eyes and just not feeling well.


At least this morning her counts were good, well not so low anyway.

Erik took her this time and we will wait for her labs to come back to see what Dr Schults' intructions are from there. Maybe she will just say to come home...just maybe.

Week 18...

We are so thankful that there is no travel in our plans for this weekend or next.

Ava has had a fairly good week with the exception of:

**Wed she was running ‘warm” (99.8) so Grammie picked her up from school. Her temp didn’t go over that 99.8 but it sure had us on edge. I’m so paranoid anytime she starts running a temp that we are going to end up at the hosp and be held hostage for a week or so – I don’t like that and either does Ava.

**Thursday she had a serious stuffy nose and one little cough so she complained enough that I decided that it was best not to take any risks and just keep her home.

Today – she is still stuffy and her temp was 99.1 when I last checked it…yes, paranoia begins to set in at any temp over 99. She is going with Erik to the clinic this morning to access her port and get a CBC count to make sure everything is looking good....Good news, Ava's ANC count was 5544 this morning!! That is the highest we've seen it in a long time. And yeah, it is probably a little high in part because she is fighting a bug...but it is still a decent number to have.

Her next treatment is scheduled for December 4th and then on the week of December 21 at which time her scans will be repeated to monitor her progress and determine what direction to go from there.

Hopefully her stuffy nose is just that, a stuffy nose and no more. The last thing we want is anything more.

Please keep Ava in your prayers for clean scans at the end of December and that she is complication free from here on out for a long, long time! While you are praying for Ava could you also say some words for all the other brave histio warriors and angels out there?

Week 17...

Gee - Is it Noveber already?

Ava did really well on Friday.


Our trip to Anchorage was long as usual but we made it back in one day and that is ALWAYS good.

She is now on phase II of treatment, which means that she has treatment every 3rd week instead of every week :)

Her scans will be repeated at the end of December to follow up and make sure all is still going well and that LCH is gone and not progressing.

We are looking forward to some down time the next few weekends - it's been a while. Just to sit back and relax at home and...relax.

Ava has had a good weekend so far, no fevers and no new complaints. Now, on to a fabulous week!

Thanks everyone for all of your prayers, thoughts and well wishes - they are all so much appreciated. Please continue to pray not just for little Ava but for all of those that suffer and perservere through such an experience...it isn't easy.

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell. ~Lance Armstrong

Week 16...

Ava actually had a pretty good week this week. She was discharged from the hospital on Monday night and did pretty well from then on. Since her counts were low and her low fever was still present we kept her home on Tuesday and Wednesday. There weren't any major complaints for the week...minor port complaints, minor leg pain, no foot pain, no vision complaints, no headache complaints, no major roid rage.


There was no school on Thursday/Friday due to parent teacher conferences and Friday she traveled to Anchorage with Erik for her weekly tx and appointment in Anchorage.

Yesterday went well. Her count was 1980 and she is anemic. Dr. Hamre checked her spleen and felt that it was fine and not to be worried about it - that part we are all very happy about :) Ava also had her MRI and CT scans done so he also went over the current and previous scans with Erik and was impressed about how much the tumor had shrunk and felt that it has made some very good progress - that is very good news!

We are pretty sure that Ava will be able to proceed to the next phase of her treatment plan...FIRST these results have to be reviewed by the board on Tuesday. We will know more on her next appointment Friday the 13th what is in store next.

Flu shot update - no flu shot yet. After her steroids are complete following chemo next Friday she can have it and that we will do in Fairbanks at the clinic.
Now, I'm not a big believer in flu shots however - taking everything into consideration it is not a risk I/we are willing to take. That being said it wasn't an easy decision.

Lately it just seemed like there was no end in sight...you know, one thing after another between work, kids, projects, money, hospital stays...the list goes on and on. Yesterday's news made everything just a little bearable...like maye there is light at the end of the tunnel.

This week while Ava was home I was able to take a day off of work and actually took care of two of many enormous piles of paperwork AND clean off my computer desk AND pay some bills...amazing huh? Well, maybe not for you but for me it is.

One pile was of the kids school papers that had piled up since August...it was huge! The other was Ava's medical paperwork that has accumulated since May - not the bills just all the wonderful information that should be kept track of during this whole process. I was able to go through it, get it sorted and put into 4 binders - FINALLY.

Thanks Rod & Kara for the beautiful doll that you sent Ava. She is wonderful and Ava loves her :) I'll try to send a picture soon.

Thank you Anita for the shirts you made for curious Georgina - They are so beautiful and keeping her oh so warm!

Our trip was once again funded by my co-workers at Alyeska Pipeline- amazing folks with some really big hearts - THANK YOU!!!

Thanks for all those thoughts and prayers - they are so much appreciated and will always be remembered!!!

~Nichole, Erik, Austin and Ms. Ava

Hope is some extraordinary spiritual grace that God gives us to control our fears, not to oust them. ~Vincent McNabb

back home...

Ahhh...home sweet home! Ava was discharged a few hours ago and was so excited to come home. Her fever has broke, well at least it is down around 100.4 or so but still there just not as high as it was. She will be on clyndamyacin for a few days and hopefully we make it to Anchorage sometime this week.


She will stay home from school for the rest of the week since her ANC counts have been dropping although they did go up to 720 today.

Sooo...now that we are home and Ava is resting it is time to get to the piles of laundry, dishes and figure out what we need for groceries. And while I am doing that Erik is off to fix the boiler at the rental and try to figure out why it has gone through almost 500 gallons of fuel last month....$$$...???

Thanks so much for all of your continued prayers and thoughfulness - it is so much appreciated and will always be remembered.

Still at the hospital...

Ava is still running a fever although not as high as yesterday, the good news is that the Motrin/Tylenol combo is breaking it. She had her ultrasound this morning and it did show that her spleen is enlarged (not sure why). Her blood culture has so far grown gram-positive cocci - we are still waiting for the rest of what it is - it takes time to grow these things. That being said we aren't leaving the hospital just yet.

Austin hopefully will be butchering his goose today so that will be one less chore for him to take care of and for us to nag him about.

Erik and I are exhausted and just need a break - and to think this is just the begining!

Our lovely (sarcasm) Alaska weather is here and here to stay.  It snowed on Mon/Tues/Wed - it dumped pretty good however it was nice and warm, well warmer than average.  Yesterday and today however was chilly and windy (cool wind) so - yuck! Winter is here along with the dryness it brings with it.