Monday, September 13, 2010
Friday, January 15, 2010
Week 26...
It is mid January already and whew...where has time gone? At times it feels a day can last an eternity and some days just fly right by.
Ava has done well for the last 3 weeks (knock on wood) and for that we are so, so grateful.
Ava has done well for the last 3 weeks (knock on wood) and for that we are so, so grateful.
Updates from Ava's Caringbridge page...http://www.caringbridge.org/visit/avawilkins/journal
Wednesday, January 13, 2010 6:24 AM, AKST
So….we are happy to update that the report from Ava’s ultrasound/KUB and abdominal x-ray came back “unremarkable”. That was a relief. So, now to figure out why she is constantly naseus and constantly feels the need to have her puke bucket close by, and whwat we can do to make it better.
Her hurting feet are still an issue and that is to be expected and we have yet to start her physical therapy for that but will hopefully have it soon arranged. Her neck is hurting today – mostly I think because she was dancing so aggressively last night. I am not sure who taught her to head bang…it must have been Erik or Austin because it isn’t a stress I would put on my own neck – LOL!!! It was quite a sight though and she was so proud of her dance moves - - - she dances like her Daddy and if anyone knows how well Erik can move then you are laughing at the thought of it right now.
Two more wake ups and she will be off to Anchorage for her next treatment, labs and tests. We won’t have the final report back until the following Tuesday or even the Tuesday after that….however long it takes we are praying for an excellent report.
The weather has been so cold here (-10 to -35 for most of the week)…it finally feels like winter actually.
As always, along with Ava please keep all of our histio, cancer and CaringBridge family in your thoughts and prayers. There are so many out there that are fighting off these ugly diseases.
Out thoughts and prayers are with the Price family who lost their only son Jake earlier in the week to HLH/BMT. He had just turned 20 the day before he earned his angel wings.
Saturday, January 9, 2010 8:23 AM, AKST
No update really. Ava had her exam with her pediatrician on Thursday and he is stumped. We were not able to get an ultrasound/KUB scheduled until early Monday morning.
So, now we just wait.
Thursday, January 7, 2010 6:23 AM, AKST
What a week. Ava has been complaining so much about her tummy hurting. We have been ignoring it somewhat thinking that it is probably just a side effect from her treatment plan. It has gotten to the point where it is just getting worse and nothing we give her to relieve the pain is working. The worst part is the not being able to do ANYTHING to make it comfortable. Tonight she has an appointment with Dr. Foote at TVC and then an Ultrasound and KUB in the morning to check on her tummy, gall bladder, spleen and liver.
We of course are praying that it us just a minor thing and we will know what we can do to make it stop hurting. Like maybe she is just totally plugged up or just some ugly stomach ulcers that aren’t responding to the meds.
As always thank you for keeping Ava in your thoughts and prayers, we know that we could not have made it this far without all of you.
Monday, January 4, 2010 8:31 PM, AKST
I'd say it's time to update this journal! It has only been 3 weeks! A long but good 3 weeks.
Ava did finally get over the stomach bug she had and then...well, the rest of us caught it. Obviously we all recovered. Ava did get it the worst though - poor thing.
Christmas was great and we were most thankful to be surrounded by good friends and family and also to spend the holiday at home and not near the hospital or Dr's office - YAY!!!
We were blessed this year with a wonderful Angel who brought us gifts for the 12 days before Christmas - we still don't know who he/she/they were...but it was fun and the kids loved it, especially Ava - Thanks!
Ava and I flew to Anchorage last week Monday (the 28th) for her appointment. Chemo went okay, actually not so okay. It really wiped her out this time more so than any other time - it was particularly hard on her but she did recover about 3/4 days later. She is feeling better now - the only major complaint is that her stomach is constantly bothering her. We may check into this a little further on one of our next two visits.
The scans...well, there was a mis-communication so now we are doing them on the 1st chemo appointment in February. I wasn't too bothered by the delay considering the risks of radiation. She has only had how many scans...??? A LOT!!!
Ava's next appointment is on the 15th and Erik will fly with her then.
School starts back up tomorrow - we are praying for a healthy uneventful week this week...it sure would be nice especially if the weather insists on 20 below zero!!! Actually I think it warmed up to 10 below today.
We wish everyone a blessed, safe, healthy, happy and prosperous 2010.
Please remember to pray for all of our histo and cancer friends and families and all those that have lost loved ones.
Sunday, December 13, 2009 11:33 AM, AKST
Ava is feeling better today...still a little lethargic but better. She had a few bites of applesauce this morning which is better than the nothing that she had yesterday.
Now she is complaining of her hip hurting, a bump on her head and her leg...probably just part of the whole stomach bug.
Anyway - she is doing better today :)
Saturday, December 12, 2009 8:35 AM, AKST
Ava is one sick little girl today! She has been puking all night. It started at about 8pm and has just now calmed down (knock on wood).
No fever - just constant throwing up. Amazingly enough she keeps drinking lots of water just for it to come back up...poor thing.
Hopefully it goes away very soon and she is back to her normal self.
On another note, she made it to her exhibit night Kindergarten preformance on Thursday and did great! I of course left the camera behind so I didn't get any pictures...next time.
Tuesday, December 8, 2009 8:23 PM, AKST
ahhhhhh....(huge sigh of relief). She probably just has a stomach bug so, we are going to just going roll with this and see how it plays out.
For now, she is home :) That is something we are all happy about and of course our wonderful Dr's and nurses in Fairbanks, Anchorage and Seattle!!! We are so stinkin blessed!
Tuesday, December 8, 2009 5:30 PM, AKST
Here we go again...Ava is on her way to the clinic for labs. She is running a fever. Please pray that her labs are good and that she just needs anti-biotics and can go home.
She was on roll of feeling well and is so excited about her kindergarten "preformance" coming up on Thursday night....will update later when we know more.
Saturday, December 5, 2009 5:07 PM, AKST
To Anchorage and back she went :)
Ava had an okay day yesterday. We all woke up at 4am so Ava and Erik could catch their 6am flight to Anchorage for her appointment. Ava's counts were good at 3000...something. She had a regular flu and the H1N1 vaccine, her treatment and the start of her prednisolone burst all in one day! She left Anchorage with a slight fever however, this morning she felt fine.
Ava crawled in bed at about 7:30 last night and with Austin spending the night at Caleb's it was a quite night for sure. Ava was exhausted and so quietly sleeping...I must have checked on her 10 times last night to make sure she was okay ~ true paranoia.
Here is to a great week ahead for Ava and the rest of us. Her next appointment is not until the 28th of December and at that point scans will be repeated...we are all praying for excellent results!!!
Please keep Ava and all of her Histio, CaringBridge friends and all of the families who have lost loved ones, in your prayers.
There are no seven wonders of the world in the eyes of a child. There are seven million. ~Walt Streightiff
Tuesday, December 1, 2009 6:13 AM, AKST
Happy Belated Thanksgiving and a Safe, Healthy and Happy Christmas Season to all of you!!!
We made it through Thanksgiving and last weekend with no hospital visits and major events - Whew!!!
Ava's fever broke finally late Wednesday night and hasn't been back since. When she was at clinic for her antibiotics she also had her port de-accessed. The sores on her butt have almost disappeared along with the sore on her tounge. No more stuffy nose and she hasn't had a nosebleed since last Thursday. She is still complaining about her upset tummy and feeling like she is going to throw up and her sore bones...other than that she has been good.
So - now, to get Ava through this week and off to Anchorage on Friday for her next treatment.
Ava and Austin are both excited to decorate this weekend for Christmas and put our tree up. We have a lot of great things to celebrate and be thankful for this year!
Thanks again for all the prayers and good thoughts, we are all so blessed to have so much support.
I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have troubles with me!
~Dr. Seuss
Wednesday, November 25, 2009 9:07 AM, AKST
Ava seems to be doing better this morning - YAY!!!
Although she is still running warm...99 - 100, she hasn't been high enough to give her Tylenol :)
Ava still has diarreah which i'm almost positive it is due to the antibiotics. She still has sore bones, an upset tummy, a lare sore on the back of her tounge (getting better), sores on her butt, a stuffy nose and a series of bloody noses... Her port is also still accessed which she is doing okay with so far, it is just a little uncomfortable when trying to sleep, cuddle or play.
She will have her blood draw later today to get another look and also see how her counts are.
My Mom showed up and took Austin to school yesterday morning - THANK YOU!!!
Also - thank you Andrea and family for dropping off a yummy pizza for us!!! It was so much appreciated and perfect timing since it ended up being a late night for us and left overs were all gone :) THANK YOU!!!
Tuesday, November 24, 2009 8:00 AM, AKST
Still...running a temp.
Ava's labs looked good yesterday, her ANC was over 2200 so, that is a good start. IF they had been low they would have admitted her to the hospital.
Ava had a dose of antibiotics and the nurse left her port accessed so she could have her labs drawn and more antibiotics today with ease.
She had Tylenol at the clinic last night and didn't spike a fever until early this morning. She now can tell be that a fever is coming even before she has a temp. She was 103.2 at 1:30 and with Tylenol it is gone and still gone...it'd be nice if it would just stay that way!
Her tummy is still bugging her and she has a funny rash on her bottom.
No school again today. I will go into work later today when Erik comes home from work around noon.
Miriam brought over our pie order last night (THANK YOU!) and we were all excited. Since I haven't had the time/energy to make homemade pumpkin pies like I have in the past I think I was the one that was most excited cause I know just how yummy these ones are!!!
Hopefully Ava will be feeling super duper so that we can go to Mom & Dad's for Thanksgiving as planned and if not we all agreed that hanging out at home watching movies and playing games was good enough for us...it sure beats passing the time in a hospital room any day.
So….we are happy to update that the report from Ava’s ultrasound/KUB and abdominal x-ray came back “unremarkable”. That was a relief. So, now to figure out why she is constantly naseus and constantly feels the need to have her puke bucket close by, and whwat we can do to make it better.
Her hurting feet are still an issue and that is to be expected and we have yet to start her physical therapy for that but will hopefully have it soon arranged. Her neck is hurting today – mostly I think because she was dancing so aggressively last night. I am not sure who taught her to head bang…it must have been Erik or Austin because it isn’t a stress I would put on my own neck – LOL!!! It was quite a sight though and she was so proud of her dance moves - - - she dances like her Daddy and if anyone knows how well Erik can move then you are laughing at the thought of it right now.
Two more wake ups and she will be off to Anchorage for her next treatment, labs and tests. We won’t have the final report back until the following Tuesday or even the Tuesday after that….however long it takes we are praying for an excellent report.
The weather has been so cold here (-10 to -35 for most of the week)…it finally feels like winter actually.
As always, along with Ava please keep all of our histio, cancer and CaringBridge family in your thoughts and prayers. There are so many out there that are fighting off these ugly diseases.
Out thoughts and prayers are with the Price family who lost their only son Jake earlier in the week to HLH/BMT. He had just turned 20 the day before he earned his angel wings.
Saturday, January 9, 2010 8:23 AM, AKST
No update really. Ava had her exam with her pediatrician on Thursday and he is stumped. We were not able to get an ultrasound/KUB scheduled until early Monday morning.
So, now we just wait.
Thursday, January 7, 2010 6:23 AM, AKST
What a week. Ava has been complaining so much about her tummy hurting. We have been ignoring it somewhat thinking that it is probably just a side effect from her treatment plan. It has gotten to the point where it is just getting worse and nothing we give her to relieve the pain is working. The worst part is the not being able to do ANYTHING to make it comfortable. Tonight she has an appointment with Dr. Foote at TVC and then an Ultrasound and KUB in the morning to check on her tummy, gall bladder, spleen and liver.
We of course are praying that it us just a minor thing and we will know what we can do to make it stop hurting. Like maybe she is just totally plugged up or just some ugly stomach ulcers that aren’t responding to the meds.
As always thank you for keeping Ava in your thoughts and prayers, we know that we could not have made it this far without all of you.
Monday, January 4, 2010 8:31 PM, AKST
I'd say it's time to update this journal! It has only been 3 weeks! A long but good 3 weeks.
Ava did finally get over the stomach bug she had and then...well, the rest of us caught it. Obviously we all recovered. Ava did get it the worst though - poor thing.
Christmas was great and we were most thankful to be surrounded by good friends and family and also to spend the holiday at home and not near the hospital or Dr's office - YAY!!!
We were blessed this year with a wonderful Angel who brought us gifts for the 12 days before Christmas - we still don't know who he/she/they were...but it was fun and the kids loved it, especially Ava - Thanks!
Ava and I flew to Anchorage last week Monday (the 28th) for her appointment. Chemo went okay, actually not so okay. It really wiped her out this time more so than any other time - it was particularly hard on her but she did recover about 3/4 days later. She is feeling better now - the only major complaint is that her stomach is constantly bothering her. We may check into this a little further on one of our next two visits.
The scans...well, there was a mis-communication so now we are doing them on the 1st chemo appointment in February. I wasn't too bothered by the delay considering the risks of radiation. She has only had how many scans...??? A LOT!!!
Ava's next appointment is on the 15th and Erik will fly with her then.
School starts back up tomorrow - we are praying for a healthy uneventful week this week...it sure would be nice especially if the weather insists on 20 below zero!!! Actually I think it warmed up to 10 below today.
We wish everyone a blessed, safe, healthy, happy and prosperous 2010.
Please remember to pray for all of our histo and cancer friends and families and all those that have lost loved ones.
Sunday, December 13, 2009 11:33 AM, AKST
Ava is feeling better today...still a little lethargic but better. She had a few bites of applesauce this morning which is better than the nothing that she had yesterday.
Now she is complaining of her hip hurting, a bump on her head and her leg...probably just part of the whole stomach bug.
Anyway - she is doing better today :)
Saturday, December 12, 2009 8:35 AM, AKST
Ava is one sick little girl today! She has been puking all night. It started at about 8pm and has just now calmed down (knock on wood).
No fever - just constant throwing up. Amazingly enough she keeps drinking lots of water just for it to come back up...poor thing.
Hopefully it goes away very soon and she is back to her normal self.
On another note, she made it to her exhibit night Kindergarten preformance on Thursday and did great! I of course left the camera behind so I didn't get any pictures...next time.
Tuesday, December 8, 2009 8:23 PM, AKST
ahhhhhh....(huge sigh of relief). She probably just has a stomach bug so, we are going to just going roll with this and see how it plays out.
For now, she is home :) That is something we are all happy about and of course our wonderful Dr's and nurses in Fairbanks, Anchorage and Seattle!!! We are so stinkin blessed!
Tuesday, December 8, 2009 5:30 PM, AKST
Here we go again...Ava is on her way to the clinic for labs. She is running a fever. Please pray that her labs are good and that she just needs anti-biotics and can go home.
She was on roll of feeling well and is so excited about her kindergarten "preformance" coming up on Thursday night....will update later when we know more.
Saturday, December 5, 2009 5:07 PM, AKST
To Anchorage and back she went :)
Ava had an okay day yesterday. We all woke up at 4am so Ava and Erik could catch their 6am flight to Anchorage for her appointment. Ava's counts were good at 3000...something. She had a regular flu and the H1N1 vaccine, her treatment and the start of her prednisolone burst all in one day! She left Anchorage with a slight fever however, this morning she felt fine.
Ava crawled in bed at about 7:30 last night and with Austin spending the night at Caleb's it was a quite night for sure. Ava was exhausted and so quietly sleeping...I must have checked on her 10 times last night to make sure she was okay ~ true paranoia.
Here is to a great week ahead for Ava and the rest of us. Her next appointment is not until the 28th of December and at that point scans will be repeated...we are all praying for excellent results!!!
Please keep Ava and all of her Histio, CaringBridge friends and all of the families who have lost loved ones, in your prayers.
There are no seven wonders of the world in the eyes of a child. There are seven million. ~Walt Streightiff
Tuesday, December 1, 2009 6:13 AM, AKST
Happy Belated Thanksgiving and a Safe, Healthy and Happy Christmas Season to all of you!!!
We made it through Thanksgiving and last weekend with no hospital visits and major events - Whew!!!
Ava's fever broke finally late Wednesday night and hasn't been back since. When she was at clinic for her antibiotics she also had her port de-accessed. The sores on her butt have almost disappeared along with the sore on her tounge. No more stuffy nose and she hasn't had a nosebleed since last Thursday. She is still complaining about her upset tummy and feeling like she is going to throw up and her sore bones...other than that she has been good.
So - now, to get Ava through this week and off to Anchorage on Friday for her next treatment.
Ava and Austin are both excited to decorate this weekend for Christmas and put our tree up. We have a lot of great things to celebrate and be thankful for this year!
Thanks again for all the prayers and good thoughts, we are all so blessed to have so much support.
I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have troubles with me!
~Dr. Seuss
Wednesday, November 25, 2009 9:07 AM, AKST
Ava seems to be doing better this morning - YAY!!!
Although she is still running warm...99 - 100, she hasn't been high enough to give her Tylenol :)
Ava still has diarreah which i'm almost positive it is due to the antibiotics. She still has sore bones, an upset tummy, a lare sore on the back of her tounge (getting better), sores on her butt, a stuffy nose and a series of bloody noses... Her port is also still accessed which she is doing okay with so far, it is just a little uncomfortable when trying to sleep, cuddle or play.
She will have her blood draw later today to get another look and also see how her counts are.
My Mom showed up and took Austin to school yesterday morning - THANK YOU!!!
Also - thank you Andrea and family for dropping off a yummy pizza for us!!! It was so much appreciated and perfect timing since it ended up being a late night for us and left overs were all gone :) THANK YOU!!!
Tuesday, November 24, 2009 8:00 AM, AKST
Still...running a temp.
Ava's labs looked good yesterday, her ANC was over 2200 so, that is a good start. IF they had been low they would have admitted her to the hospital.
Ava had a dose of antibiotics and the nurse left her port accessed so she could have her labs drawn and more antibiotics today with ease.
She had Tylenol at the clinic last night and didn't spike a fever until early this morning. She now can tell be that a fever is coming even before she has a temp. She was 103.2 at 1:30 and with Tylenol it is gone and still gone...it'd be nice if it would just stay that way!
Her tummy is still bugging her and she has a funny rash on her bottom.
No school again today. I will go into work later today when Erik comes home from work around noon.
Miriam brought over our pie order last night (THANK YOU!) and we were all excited. Since I haven't had the time/energy to make homemade pumpkin pies like I have in the past I think I was the one that was most excited cause I know just how yummy these ones are!!!
Hopefully Ava will be feeling super duper so that we can go to Mom & Dad's for Thanksgiving as planned and if not we all agreed that hanging out at home watching movies and playing games was good enough for us...it sure beats passing the time in a hospital room any day.
Monday, November 23, 2009
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!!!
Saturday, November 21, 2009
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!!!
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.
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.
Friday, November 20, 2009
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?
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?
Sunday, November 15, 2009
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
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
Saturday, November 7, 2009
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
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
Monday, November 2, 2009
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....$$$...???
Thanks so much for all of your continued prayers and thoughfulness - it is so much appreciated and will always be remembered.
She will stay home from school for the rest of the week since her ANC counts have been dropping although they did go up to 720 today.
Sooo...now that we are home and Ava is resting it is time to get to the piles of laundry, dishes and figure out what we need for groceries. And while I am doing that Erik is off to fix the boiler at the rental and try to figure out why it has gone through almost 500 gallons of fuel last month....$$$...???
Thanks so much for all of your continued prayers and thoughfulness - it is so much appreciated and will always be remembered.
Sunday, November 1, 2009
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.
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.
Friday, October 30, 2009
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.
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.
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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