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!

Week 13...

Week 13 Two more weeks left of this phase since she missed a few during her hospital stay in Fairbanks and also didn’t get to have it last week due to her counts being so low.

Yesterday’s visit went well. We flew into Anchorage early in the morning picked up our car and got to the hospital in record time  Ava had her labs done and everything looked better than normal. Her counts were even up higher than they have been - and that was to be expected since she didn’t have her chemo bringing her system down.

Again – we had another quick flight home which is always a treat to be home sooner than expected. Ava sat next to the window, I sat in the middle and a Trooper named Robert sat in the aisle seat. Ava made the flight interesting when she continuously commented on how handsome Robert was and insisted that I ask him to come to our house and stay the night. I had to explain to her that Mommy was married and Daddy wouldn't appreciate that and that she shouldn't be talking to strangers anyway....ughh...all I could do was laugh and ask the poor guy if he had kids of his own (he did).

Still she has her daily complaint of a sore throat, sore shin and sore spots on her back. It was easy sailing for the most part last week. No fevers or secondary illnesses (flu, cold etc.) anyway...Thank God

We didn’t get around to doing her beads of courage – but that will be done next time I’m sure when she goes with Daddy.

Her scans were originally scheduled for next week (the 24th) but I think we are going to wait until the 30th…that way we will have one more chemo treatment in there and hopefully more progress made to get us to phase II.
Ava got to visit with Dana this week – and that was very special for her. She has wanted to visit for a long time.

Still – we have not made a decision on whether or not we will relocate to Anchorage. I did however, request additional time (1 year) to make my decision. This just is not a good time to add more chaos to our life.
A special note of appreciation to our team at Children’s Hospital in Anchorage – they are wonderful people!!! We look forward to seeing them on Fridays  Although hopefully come November we won’t be seeing them so often!

The mileage for our trip this week was once again gifted to us by some amazing co-workers at Alyeska. Kathy, Richelle, Cheryl, Shana and others have been taking care of these tickets for over a month and on Monday I went through the day taking care of many things that have been neglected for so long and wondered how on earth we are able to get through a day sometimes…Thank you ladies for making our lives so much easier – your thoughts and actions are so much appreciated and will always be remembered.

We also have been enjoying some wonderful Mexican Cornbread Pie – THANKS Anita! I also was treated to a massage on Wednesday – ahh…it was heaven. It has been a good month since I had a good nights’ sleep and that night I slept soo….well!

Wherever you go, no matter what the weather, always bring your own sunshine. ~Anthony J. D'Angelo

Ava eating a popcicle with her bear after chemo.

Ava playing dress up in Daddy's clothes :)

Alvin and the Chipmunks - Thank You

This is for everyone who has helped us in getting through this difficult time in our lives. Whether we are in your thoughts and prayers, or through a phone call, a meal, airlines miles, gifts of money, lending a helping hand on our day to day chores/business, beautiful quilts and blankets, kind words, a hug, an email, drinks it is all so much appreciated and your kindness and generousity will always be cherished. THANK YOU!

Finding a Cure ~ Langerhans Cell Histiocytosis

Hike For a Cure 2009

Week 12...

Week 12...(sigh)


It was Daddy's turn to go with Ava this week and they are on the plane home now. Which, is a good thing but not so good thing too.

Ava didn't get her chemo today, her ANC count was WAY too LOW - darn it! It was right around 300 - I didn't get the exact number but Erik said it was 300. We will bring her in on Monday morning and see what they are at. So, we take a step back and this weekend she stays in "isolation" (at home of course) until her numbers come up...darn it. That just means that next week she will take big leaps forward!

In the mean time we continue with the steroids, hope her numbers come up and that she can have her chemo tx next Friday. OR better yet pray that this is a sign and miraculously this disease is just plain GONE :) Yes, that sounds even better!!!

She seems to be feeling fine, no fevers and no major complaints so for that we are thankful. She does still have the nagging pain in her feet (right foot mostly), the thining of her hair, the pain at the base of her neck, sore throat, raw tounge etc...

On a different note, the weather here in Fairbanks is looking great for this weekend so we will take it and make the most of it before the snow truly flies and decides to stay.

Thanks so much for the meals, miles, money, prayers, cards - you know who you all are...THANK YOU SO MUCH it has made our lives so much easier.

Enjoy the little things, for one day you may look back and realize they were the big things. ~Robert Brault

Week 11...

Week 11...? or so. We only have 2 or did she say 3 left for the re-do of induction phase....ah close enough. It has been a long week to say the least! If this update is a little jumbled - I apologize.

This last week went okay. Ava's hair continues to thin although I'm not noticing it falling out as much as the week before. She was complaining of pain in her feet, hip and knees which is a normal side effect of the chemo but pain is pain. That and her daily complaint of a sore throat, sore chin and sore spots on her back. It was easy sailing for the most part this week - no fevers or secondary illnesses (flu, cold etc.) anyway...Thank God.

It was my turn to travel to Anchorage with Ava. We left this morning and flew back home this afternoon. The flight home was probably the fastest Anch/Fbks flight ever! We are talking 35 minutes or so. I've also never heard so many folks coughing and sniffeling either - that could be just cause I notice it more now than ever before.

Ava's counts were low as usual but nothing alarming well, except there was concern over her HCT number being at 24.8 - the go ahead for her chemo was given anyway as it has been a gradual drop and not a sudden drop, still phone calls were made to ensure the right decision was made in administering her tx today.

Her urine was clean today and that was good as the resultes over the last few weeks have been questionable.

As for the pain in her feet which seemed to dominate a few of our mornings we will begin some physical therapy to ensure that she doesn't have any long lasting/permanant side effects. There was a slightly noticible gait, nothing super alarming but since it is most likely a side effect from the chemo we are going to mitigate the effects and get started with pt now instead of later.

On a side note, Ava added 3 more beads to her beads of courage. That is always a fun thing that she looks forward to doing.

Although it was a long day, we had just the right amount of time. We were up at 5am to get ready and catch our morning plane and left the hospital at 5pm to catch our 7pm plane. Still, glad to be home all in one day :)

Now, off to another week of avoiding germs and staying healthy...one day at a time.

Also, not to forget our decision which weighs heavily on our family at the moment and that is whether or not we will be relocating to Anchorage for my job or not. This one is a tough one - not so obvious. Our main focus at the moment is Ava and family in general. I can't even begin to imagine moving and relocating until we have squashed this disease. We are praying that we make the right decision and at that point move forward and not look back.

Thanks to all of my amazing co-workers at Alyeska Pipeline for the mileage as well as extra funds that has been generously provided to us for this trip and for Ava's upcoming travel as well! Thanks everyone!!! Our family is so very grateful for all you have unselfishly gifted to us.

“I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly.” Anon

Now that is a lot of beads (beads of courage) !!!

Ava's pic she took of her Mama!

The felt is on the roof!  Erik will put the rest of the windows and house wrap on over the next week...

back...

shed...

side of the shop...

garden...

play house and trampoline...

Week 10

Week 10 of treatment....is that all?  It seems so much longer than that!

Ava's treatment went well yesterday and she & Erik were able to fly home last night :) She still has a stuffy nose and cough but NO fever. I was just excited she was able to go to Anchorage and even more when they were able to do it all in one day...what a relief!!!


She came home and told me all about her visit - I think this is the first one where I wasn't there. Next week it is my turn to go with her. Anyway she was disappointed that Austin wasn't here to greet her but is looking forward to seeing him tonight. Austin is in Delta picking up grain for his cows and helping his Pappa with who knows what.

There is snow on the ground this morning and it is 33* - It looks as though the inevitible is here :(

Anyway all is good and we are looking forward to a healthy week for Ava snow or no snow.

Ava - Stuffy Nose and Cough

Ava will travel to Anchorage tomorrow for chemo with Erik. Right now, she has a seriously stuffy nose and a croupy cough.


If there is one thing that irritates Ava to no end it would be a stuffy nose!!! NO fever though but she is going to stay home today just in case. Praying, praying, praying that no fever pops up and her stuffy nose an cough improves as the day goes on.

Ava's hair has also begun it's course of thinning out pretty good. Keep in mind she has some really, really thick hair. The amount of hair in the hairbrush the other day put things into perspective. I think it is time for a hair cut with some layers in it. I don't think she will lose it all but that it will just thin out quite a bit. I don't think she even notices yet but when Erik noticed - I knew I wasn't imagining things.

Thanks to some extremely generous co-workers the airtravel is covered tomorrow and for the next few weeks....Thanks everyone.

~Nichole (and Erik, Austin & Ava)

Ava's Treatment Plan and Misc. updates...

Ava began her treatment plan on July 24th.


Phase I consists of 6 weeks of chemotherapy and steroids along with other medications to reduce side effects of the chemo and steroids.

Phase II consists of chemo and steroids once every 3 weeks for 9 weeks

Phase III consists of chemo and steroids – schedule to be determined for 9 weeks.


Ava had surgery to install her port on Tuesday July 22nd. Her first chemo was on Friday July 24th and her second treatment on July 31st. We were in Seattle at Children’s Hospital for both of these treatments. On August 7th we were released from Seattle Children’s and flew to Anchorage for Ava’s third treatment on August 7th.

Providence Children’s Hospital in Anchorage is working closely with our team in Seattle to make sure all treatment plan and follow ups are on the right track. In the mean time we spend our week at home in Fairbanks and travel to Anchorage on the weekends for Ava’s weekly chemo treatments.

Ava had been breezing through all her chemo sessions up until her 6th week. On August 29th, the day after treatment 6 Ava spiked a high fever (up to 104.6). We were halfway between Anch and Fairbanks and had a choice to turn around or continue on and check into the ER once in Fairbanks. Once in Fairbanks we….well…it was a bit nightmarish but Ava was in and out of the hospital for about 2-1/2 weeks.

After Ava’s 6th chemo (August 28th) she had her follow up and scans to see how her body was responding to the treatment. On Sept. 8th the results were in and Ava’s tumor did not shrink enough to move on to phase II of the treatment plan. This means she continues with her weekly chemo for the next 6 weeks along with steroids. On week 6 she will be scanned and tested again and we go from there.

On Sept 18th we finally headed back to Anchorage for chemo after missing 2 treatments. So far so good and she is on schedule to go again this Friday. She is one brave and tough little girl and will get through this.

We have had some amazing support pour through over the last few weeks from so many family, friends, neighbors and co-workers. We are so thankful for everything from helping us put the roof on our house to homecooked meals and airline miles for us to travel to Anchorage and back.

Thanks so much for all of your support, thoughts, prayers, words of encouragement - everything!!

The trusses are up, the roof is ON!  We had a lot of help from friends and family over the last month to get it sealed in and ready for winter.  Let it snow....well, not just yet.

Mtich, Tim and Brian and Mike - THANK YOU for all of your help!

Mitch is in the pic above

Tim hiding behind the wall...

Tim sitting in the window...

Erik trimming things down...

Brian peeking out of the window...

There is Miss Ava - that is a long way down!!!

Ahh...the view - not too bad from the 2nd floor.

Walls and 2nd Floor

This is where we left off (begining of July) on the house building prior to emergently traveling to Seattle for Ava's medical.  It is now September 12th and Erik is working on putting the trusses up this weekend. 

Erik working on the second floor - I think we are putting the

BCI's up here - that was an interesting task!

We are hoping to just weather it in and call it good for now.  It is time to put this project aside and focus on Ava and Austin as well.

Walls...

2nd floor almost up!

TVSF 2009

Austin entered a Steer, Pig and Goose in the Tanana Valley State Fair this year.

Austin & Chinook below.

Austin whispering into Chinook's ear - you had to be there. 

We were all wondering what he was whispering to him...

Austin receiving his ribbon - Chinook was Reserve Grand Champion

Austin and his pig - Ember

Not sure what place he took

Austin's geese...

My nephew Brenden took Grand Champion with his goat -

we were all SO proud of him :)

Ava is to the left Eadie is to the right.

Ava and Eadie with Ava's goat - with everything going on we

managed to get her goat entered into the fair.

Ava with her goat and Eadie to right.

September is Histiocytocis AND Cancer Awareness Month...

The Chosen Mothers


by Erma Bombeck

Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mother's of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.......

"Armstrong, Beth, son, patron saint Matthew"

Forrest, Marjorie, daughter, patron saint Cecilia"

Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel,

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel.

"No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see....ignorance, cruelty, prejudice....and allow her to rise above them."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles and says..."A mirror will suffice."

Children's Hospital and Ronald McDonald House

Waiting....we did that a lot while we were there.

Resting...we did that a lot while we were there too...

Pokes and more pokes...

Ava riding a bike in the halls on the SCCA floor.

Ava out to dinner with Suzy.  Karen and Suz drove up from

Portland one day to visit us for the afternoon :)

Ava and Suzy...

Karen, Ava and Ronald at Ronald McDonald House

Ava eating ice cream - we walked down the street to Baskin Robins.

Ava was diagnosed with Langerhans Cell Histiocytosis (LCH)

This was about 3-1/2 weeks into Ava's swollen eyelid about when it turned from normal skin tone to red. This is about the time we took her to the pediatrician who referred us to our eye Dr. who eventually referred us back to our pediatrician...and so on.

After the 3rd week eyelid got progressively worse and developed a large bump from her eyelid through her brow area and above the brow about 1-1/2" to 2" area. You can see this in the picture below. The picture below is week 6 (July 7th, 2009) and also the same day that we made the decision to go to the emergency room at Fairbanks Memorial Hospital. After a CT scan was done it was recommended that Ava medavac to Children's Hospital in Seattle immediately

Below: Post biopsy by Opthamologist Avery Weiss at Children's Hospital in Seattle

On July 14th, 2009 Ava was diagnosed with Langerhans Cell Histiocytosis. She had a tumor type growth above her eye and it affected her lymph nodes as well, both on her left side. There are also questionable lesions on her scalp.

What is Langerhans Cell Histiocytosis?
NOTE: The information below has been taken from the following websites:

http://histio.org/

http://cancer.seattlechildrens.org/conditions_treated/langerhans_cell_histiocytosis/

In Langerhans cell histiocytosis, certain white blood cells, called Langerhans cells, grow out of control.

In a healthy person, these cells help defend against infection. But in histiocytosis, the cells multiply so quickly that they build up and can damage the body instead of protect it.

Except for their rapid growth, the cells are normal. This disease is not cancer. But it is similar. Doctors who treat cancer and blood diseases also treat histiocytosis.
Some people with the disease have excess cells and damage in only one site or organ in their bodies. Others have excess cells in many places throughout their bodies.

The bones are the most common sites of damage - mainly the bones in the skull but also in other places, such as the spine, arms and legs. This disease can affect many body systems.

About 80% to 90% of children recover from this disease with treatment. Sometimes it goes away slowly on its own. It can be serious, even fatal in severe cases. It can also come back later in life.

Langerhans cell histiocytosis has had other names, and there are subtypes of the disease. So you may hear or see one of these names:

* Diffuse reticuloendotheliosis

* Eosinophilic granuloma

* Hand-Schüller-Christian disease

* Hashimoto-Pritzker syndrome

* Histiocytosis X

* Langerhans cell granulomatosis

* Letterer-Siwe disease

* Non-lipid reticuloendotheliosis

* Type II histiocytosis

Langerhans Cell Histiocytosis in Children
A person of any age can get histiocytosis, but it is more common in children. About three-quarters of people with the disease get it before age 10. It is most common in children 1 to 3 years old.

Doctors do not know what causes this disease, but are actively researching the causes and treatment for histiocytosis. It may be an abnormality in the person's immune system but it is not inherited or communicable, passed from person to person.

Symptoms of Langerhans Cell Histiocytosis
Symptoms of Langerhans cell histiocytosis depend on which tissues and organs it affects. Not all children with the disease have the same symptoms.
These are some symptoms that may occur in a child with this disease:

* Pain, swelling or lump in a bone that does not go away, such as on the skin, arms or legs

* Bone fracture for no clear reason or from only minor trauma

* Loose teeth when you would not expect this, or swollen gums

* Ear infection, cysts in the ear or fluid that oozes from the ear

* Skin rash, such as on the scalp or buttocks

* Swollen lymph nodes in the neck (also called swollen glands)

* Liver problems, which may cause jaundice (yellow color in the whites of the eyes; maybe yellow tint in the skin for some skin colors), fluid in the belly, diarrhea or vomiting

* Bulging eyes or other eye problems

* Cough and trouble breathing

* Weight loss for no reason

* Failure to thrive, which means not gaining weight and growing normally

* Not wanting to eat or having problems feeding

* Needing to urinate more often than normal and being very thirsty (signs of a health problem called diabetes insipidus)

* Basic signs of illness, such as fever, fatigue and weakness

The same symptoms can also be caused by other health problems. So it's important for a child with symptoms like these to see a doctor to find out the cause.

Langerhans Cell Histiocytosis Diagnosis
It can be hard for doctors to diagnose this disease because it is rare.

Your child's doctor will start with a thorough exam to look for signs of illness and will ask about your child's health background. Then the doctor may suggest a number of tests to tell what is happening in your child's body.

Blood tests are a common step. They can give information about what is going on in the blood and the bone marrow, as well as in some organs, such as the liver.

Your child's doctor may also want your child to have pictures taken of the inside of her body, such as an X-ray, CT scan or MRI.

These are called imaging studies, and they allow the doctor to look for areas of disease, such as damage to your child's bones, lungs or brain.

If the doctor thinks that your child may have histiocytosis, the doctor will perform a biopsy to confirm this. This may mean taking out a small piece of bone, lung or skin or a lymph node.

Treatment for Langerhans cell histiocytosis

Treatment for Langerhans cell histiocytosis depends on how many parts of the body are affected and which parts. Here are the main treatments that doctors use. All of these are offered through Children's Hospital.

Treatment Options for Langerhans Cell Histiocytosis

Surgery
Doctors may operate to remove the excess Langerhans cells (used mostly for bones).

Steroids
Steroid medication may be injected into the places with excess Langerhans cells.

Anti-Cancer Medicines
Chemotherapy medicines used to kill cancer cells may also help control Langerhans cells. Doctors give some types of these medicines through a vein (intravenously, or by IV). For skin problems, they may apply medicines right on the skin. The doses are lower than used for cancer.

This treatment can help control cells that are damaging bone and making it weak. The doses are lower than for cancer.

New Treatments for Langerhans Cell Histiocytosis
Children's Hospital is working with the Histiocyte Society to develop better treatments for Langerhans.

More information about LCH and other Histiocytic disorders can be found at:
http://www.histio.org

www.histiocytesociety.org

http://cancer.seattlechildrens.org/conditions_treated/langerhans_cell_histiocytosis/