...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.
Friday, October 30, 2009
Tuesday, October 27, 2009
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!
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!
Saturday, October 17, 2009
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
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 :)
Wednesday, October 14, 2009
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!
Friday, October 9, 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
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
Friday, October 2, 2009
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
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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!
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