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. 

Week 15...

...only not in Anchorage as planned. And we were all looking forward to having her chemo today and getting the MRI and scans out of the way so we could (hopefully) move on to the next phase of treatment SOON.


Ava spiked a fever last night and we landed in the hospital (Fairbanks Memorial Hosp). Her counts don't look bad and her ANC was at 2650 or so (I think). She may have a slight UTI but nothing major. Her fever was at around 103.7 and has come down with the help of Motrin and Tylenol.

We will be here a few days until her fever breaks and is gone for probably at least 12 hours...that is what I speculate anyway.

So, no chemo for a few days. We will wait for Dr. Hamre to let us know what to do from here.

The nurse in the ER last night was great and port access was a breeze - THANK GOD!!! The communication was good and our experience so far has been soooo much more positive than our last Fairbanks hospital stay. This makes me (and Ava) so, so, so happy!!!

The snow has fallen and here to stay. We sure had amazing fall weather this year and it felt like it was actually a season :)

Ava had a visit with our favorite dentist (Lee Payne DDS) and hygienist (Sue) and her teeth looked good. She does show signs of grinding though which we knew. We were worried because her eye teeth were bugging her more so on one side than the other - but it would make sense because she has been an aggressive teeth grinder lately.

Aside from the normal aches and pains, and lets not forget some serious roid rage (steroid rage not hemroid rage :) ) Ava seems to be doing fine - well, except for her current fever.

I signed my paperwork for Alyeska yesterday with my intentions to relocate to Anchorage. Our move is to take place and be in place by October 1st 2010. Now, it is time to put this decision behind us and focus on Ava and come back and move forward on it at a later date.

Austin - has been busy with his animals and school work. I have to say that he is one of the hardest working children I know...it is so beyond time to send him to Kidville cause this child really needs to learn to relax and PLAY!!!

Last week we had dinner at my Sister Renee's house, my nephew Brenden made up some delicious Chicken (that he raised) and dumplings - YUMMY...Thank you, it was wonderful.

Anita hand made a sweater for Curious Georgina and sent me home with some more Curious George books for Ava...Anita, you timing was perfect, just in time for our stay at the hospital. You see last time Ava was in the hospital here in Fairbanks Anita gave Ava a Curios George stuffed animal which was one of our highlights from our last stay.

Thanks Mom for picking up the kids and helping out this week!

Our mileage for our trip today (which is now postponed) was given to us by Alyeska...not sure who was all behind making that happen - but Thank You!!! It is all so appreciated.

Thank you from the bottom of our hearts for your continued thoughts, prayers, well wishes and positive vibes - every little bit sure helps.

Our lives have changed so much in the last few months and the added stress of other things popping up here and there and new decisions placed upon us seems unbearable some days but thanks to God and many amazing friends, family and histio families that we have networked with and our great staff of Dr.'s and nurses we are making the best of all of this and just going day by day.

A sunbeam to warm you,
A moonbeam to charm you,
A sheltering angel, so nothing can harm you.

Week 14 -

Ava's counts looked good this week and she did get her tx.
Dr. Russ Geyer was present for her appointment this time. He is the Dr. that is on our team at Seattle Children's Hospital. I was so excited to hear that he was there. Not that we don't love our team in Anchorage but it is always nice to see familiar faces. It is also reassuring for us to know that the communcation is good between the hospitals and the staff :) :)

Her ears were bugging her during the week last week but looked okay on Friday and don't seem to be bothering her lately.

On the 30th I travel to Anchorage with Ava to have her scans and MRI done. Oh - let me not forget, the dreaded flu shot. I am so hesitant on these vaccines and flu shots, this time though - we are doing it for Ava as it was highly recommended by Dr. Geyer.

Really praying this week that her tests come back in a good way and that we can move on to the next phase in the treatment plan.

The weather has been so amazing here for the last month - October has been like no other October I've seen (in Fairbanks anyway). We did however get our first good dump and I'm affraid it is here to stay. It is still fairly warm though so we can't complain.

While we try to teach our children all about life, Our children teach us what life is all about. ~Angela Schwindt

We have grown and learned so much over the last few months - this is all life changing like I never would have imagined.

I keep reminding me of what my friend Maxine told me a few weeks ago..."God won't give you more than you can handle" Those words are so powerful!

Thanks everyone for the airlines miles for our flights back and forth to Anchorage, for the gifts of money, handmade blankets, visits, phone calls, emails, cards, meals, prayers and ecouragement...and my Mom for doing the dishes and folding my laundry today :) I have the best Mom!!!

More prayers are needed to get her through these next set of scans - and that the results are enough to move on to the next phase of treatment or even better yet that there is no sign what so ever of this awful disease.

Love and Thank you all!