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...
Wednesday, September 30, 2009
Saturday, September 26, 2009
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'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.
Thursday, September 24, 2009
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)
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)
Wednesday, September 23, 2009
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!!
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.
Saturday, September 12, 2009
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.
Wednesday, September 9, 2009
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."
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."
Wednesday, September 2, 2009
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.
Monday, August 31, 2009
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.
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.
* 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
* 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
Langerhans Cell Histiocytosis Diagnosis
It can be hard for doctors to diagnose this disease because it is rare.
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.
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:
NOTE: The information below has been taken from the following websites:
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:
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.
Children's Hospital is working with the Histiocyte Society to develop better treatments for Langerhans.
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