Today was hectic, but we did get good news! The OED has decided to grant the unemployment benefits for Scott,... despite the lengthy process of trying to get his former empl. to cooperate with them. It's only temporary for now while they finish their investigation, but they seem to really want to help us get it all worked out. The problem has arisen from the other side according to the OED, and we've done everything we can from our's. One of those things where I think they're seeing through the smoke & mirrors, and realize that we not only need those benefits, but we deserve them, too.
Things have not gone well with the former --, but I'm not going to post on any of that. It serves no good purpose,.. and it's not characteristic of me, but if I were to make an exception and say one thing, without being too specific as to whom or what I'm referring to, it might go something like this,.. "liar, liar, pants on fire",... just kidding, LOL.
Anyway, so the unemployment for the past 3-4 weeks are supposedly in the mail, and hopefully we will find out here within the next few days whether they will take the 'temporary' off the claim.
Monday, December 06, 2004
Sunday, December 05, 2004
What are the odds??
You'll never guess what happened today! ALL THREE of the girls EACH lost another tooth today,.. I don't know what the odds of that happening are, but we think it's pretty funny! What a quirky thing to happen,.. we've had them lose teeth around the same general time before, within a few days apart even, but never on the same day, and certainly not ALL THREE of them, LOL.
Ashley was the first to lose her's this morning,.. and she was definitely excited over it. Then, around lunchtime this afternoon, Courtney's popped out! Even more excitement then because it was two kids in one day,... well, Brittney also has a loose tooth, and so she started wiggling her's more & more, but it was being stuborn,.. she was getting discouraged, but we found ways to distract from it by making paperchains, LOL. Anyway,.. so before we know it, the day is gone, it's time for bed,... Brittney wiggles & wiggles her tooth some more, and sure enough,.. it popped out, too!! I thought she was going to pass out from the excitement, LOL,.. they were all in such a frenzy! What fun!
Ashley was the first to lose her's this morning,.. and she was definitely excited over it. Then, around lunchtime this afternoon, Courtney's popped out! Even more excitement then because it was two kids in one day,... well, Brittney also has a loose tooth, and so she started wiggling her's more & more, but it was being stuborn,.. she was getting discouraged, but we found ways to distract from it by making paperchains, LOL. Anyway,.. so before we know it, the day is gone, it's time for bed,... Brittney wiggles & wiggles her tooth some more, and sure enough,.. it popped out, too!! I thought she was going to pass out from the excitement, LOL,.. they were all in such a frenzy! What fun!
Saturday, December 04, 2004
I broke my hand...
Well, my updates seem to be spread out farther on more of an average the past few months, due to a lot of things that have been going on. I don't mean to leave people hanging wondering when I'm going to post again lately, but I'm sure most understand why, too. I'm trying to do my best to keep up with everything, and I appreciate everyone's patience.
Okay, so for starters,.. Ashley had another MRI on Monday, and it went well. We don't have the results back yet, but hopefully we'll hear something by Monday. They ran the white IV again, and we've learned very quickly that that is definitely the way to go. She does so much better! She just dislikes the gas mask so much, and so this way, she only gets put under with the mask, and then they switch her over immediately to the IV solution for the remainder of the scan, and she wakes up so much more comfortably because of it. They also did her labs again, another CBC,.. we'll get those results when we hear from the oncologist about the scan results.
Ashley was scheduled to see the oncologist again on Monday as well, and also the ophthalmologist on Tuesday, but we have temporarily postponed those follow-ups. Those two visits would have cost $80 more in copays, of which we just do not have at this time... Once the girls are on the OHP, the visits will be covered 100% by both doctors so it was decided with both offices that it was in our best interest to simply 'postpone' the visits. There will be no physical harm in a short delay, and the break in medical costs will be a huge relief since we are still desperately trying to catch up with everything already from this year yet.
I'm doing better. My levels feel like they are sustaining at the new dosage for my thyroid medication. My hand is doing enough better that I'm using it more & more, even though I probably shouldn't because it still causes a great deal of discomfort. I hadn't mentioned it before because there has been too many other things going on so this is probably the first that most are hearing about it, but what happened was, I crushed my left hand in one of the pellet stoves about 5 weeks ago, and definitely broke 3 of my fingers. I opted not to go to the hospital, or the doctor because frankly, we don't need any more medical bills. Unfortunately, I also have not refrained from using my hand,.. My excuse, is because I just plain need the use of both of my hands too much right now so I have just continued on despite it. I'm hoping that by not getting it set and cast that I haven't caused any permanent damage, but at this point all I can do is pray that in the long-run it will be okay. I can feel in each finger where the bones are misaligned, and get sharp, stabbing pains at the location of each break if I grab something,... Using them more than minor tasks hurts a lot, and I've noticed that cold really causes a lot of sharp pain for some reason, too. My ring finger hurts in two places so I don't know if there may be more fractures than I can physically tell of, or if it just simply hurts a bunch, and my pinkie has given us some question as to whether it may have sustained more damage than I realized too, but we just don't know, and probably never will. I would just like to ask for prayers that it will eventually heal enough for me to be able to use it without pain. I am conscerned that I have made a bigger mistake than people are telling me I have, by not getting it taken care of because I still get stabbing pains in my foot if I step wrong, from when I broke it 13 and a half years ago. I had fallen down a full flight of concrete stairs, and am probably very lucky my foot is all I broke, but anyway, I was really dumb, and went straight home from the ER, and cut off my cast (remember that, Babs??),.. I guess I'm still pretty dumb when it comes to that stuff, huh! :)
Courtney is doing well. Her reading glasses have been really beneficial for her so I'm glad that we were able to get them when we did. Did I post that she got reading glasses?? I can't keep track of everything anymore, LOL. Anyway, she did, and she has been really getting back into reading again since she got them because now her eyes don't hurt. She often stays up reading before bed, too, and we have to encourage her to find a place to break, and go to sleep, LOL.
Ashley seems to have been doing well on the latest anti-seizure medication. She hasn't had any of the fierce pain episodes in the last couple of months or so. She does still have daily pain episodes, but they are much less severe than they were. She still ends up needing pain medication at least once every day, sometimes twice, but I'd say that's a whole lot better than the 3-4 times a day she was needing, and would then still continue to be in pain, even despite medication on many occasions. We are really praying that things will remain the way they are for her right now, if not get even better, and that the latest MRI results will give us encouraging news. At least, we can additionally remain thankful that her tumors have maintained their size to date, and not grown,.. that we've been able to tell so far.
I would like to announce that our little friend, Shaylee, is finally done with her 60 weeks of chemotherapy!!! She has been such a little trooper, and their family has also been through so very much this past year,..
Okay, so for starters,.. Ashley had another MRI on Monday, and it went well. We don't have the results back yet, but hopefully we'll hear something by Monday. They ran the white IV again, and we've learned very quickly that that is definitely the way to go. She does so much better! She just dislikes the gas mask so much, and so this way, she only gets put under with the mask, and then they switch her over immediately to the IV solution for the remainder of the scan, and she wakes up so much more comfortably because of it. They also did her labs again, another CBC,.. we'll get those results when we hear from the oncologist about the scan results.
Ashley was scheduled to see the oncologist again on Monday as well, and also the ophthalmologist on Tuesday, but we have temporarily postponed those follow-ups. Those two visits would have cost $80 more in copays, of which we just do not have at this time... Once the girls are on the OHP, the visits will be covered 100% by both doctors so it was decided with both offices that it was in our best interest to simply 'postpone' the visits. There will be no physical harm in a short delay, and the break in medical costs will be a huge relief since we are still desperately trying to catch up with everything already from this year yet.
I'm doing better. My levels feel like they are sustaining at the new dosage for my thyroid medication. My hand is doing enough better that I'm using it more & more, even though I probably shouldn't because it still causes a great deal of discomfort. I hadn't mentioned it before because there has been too many other things going on so this is probably the first that most are hearing about it, but what happened was, I crushed my left hand in one of the pellet stoves about 5 weeks ago, and definitely broke 3 of my fingers. I opted not to go to the hospital, or the doctor because frankly, we don't need any more medical bills. Unfortunately, I also have not refrained from using my hand,.. My excuse, is because I just plain need the use of both of my hands too much right now so I have just continued on despite it. I'm hoping that by not getting it set and cast that I haven't caused any permanent damage, but at this point all I can do is pray that in the long-run it will be okay. I can feel in each finger where the bones are misaligned, and get sharp, stabbing pains at the location of each break if I grab something,... Using them more than minor tasks hurts a lot, and I've noticed that cold really causes a lot of sharp pain for some reason, too. My ring finger hurts in two places so I don't know if there may be more fractures than I can physically tell of, or if it just simply hurts a bunch, and my pinkie has given us some question as to whether it may have sustained more damage than I realized too, but we just don't know, and probably never will. I would just like to ask for prayers that it will eventually heal enough for me to be able to use it without pain. I am conscerned that I have made a bigger mistake than people are telling me I have, by not getting it taken care of because I still get stabbing pains in my foot if I step wrong, from when I broke it 13 and a half years ago. I had fallen down a full flight of concrete stairs, and am probably very lucky my foot is all I broke, but anyway, I was really dumb, and went straight home from the ER, and cut off my cast (remember that, Babs??),.. I guess I'm still pretty dumb when it comes to that stuff, huh! :)
Courtney is doing well. Her reading glasses have been really beneficial for her so I'm glad that we were able to get them when we did. Did I post that she got reading glasses?? I can't keep track of everything anymore, LOL. Anyway, she did, and she has been really getting back into reading again since she got them because now her eyes don't hurt. She often stays up reading before bed, too, and we have to encourage her to find a place to break, and go to sleep, LOL.
Ashley seems to have been doing well on the latest anti-seizure medication. She hasn't had any of the fierce pain episodes in the last couple of months or so. She does still have daily pain episodes, but they are much less severe than they were. She still ends up needing pain medication at least once every day, sometimes twice, but I'd say that's a whole lot better than the 3-4 times a day she was needing, and would then still continue to be in pain, even despite medication on many occasions. We are really praying that things will remain the way they are for her right now, if not get even better, and that the latest MRI results will give us encouraging news. At least, we can additionally remain thankful that her tumors have maintained their size to date, and not grown,.. that we've been able to tell so far.
I would like to announce that our little friend, Shaylee, is finally done with her 60 weeks of chemotherapy!!! She has been such a little trooper, and their family has also been through so very much this past year,..
Tuesday, November 16, 2004
Worse scrapes...
It's been just shy of a couple months since my last post. Alot has happened that has taken up my time & attention, and there hasn't been a whole lot of new information regarding Ashley's current condition. A lot has taken place the past couple of months though, and we are in worse scrapes. Still, I believe we will make it through, and having all of the support that we do, in each of you, reassures me of that daily. And these are times when one of my favorite poems comes to mind,.. Footprints in the Sand, as we, too, are being carried.
The past month and a half especially have been the most difficult,.. Scott's has been battling severe depression for most of this year. It had continued to build and grow,... Ashley's condition, and her recurrent/daily pain, the medical bills, his mom's cancer,.. it was all becoming too much to deal with, although he was trying so hard. He began talking to a Christian counselor, and his physician supplied him with some medication. Unfortunately, that medication added to his condition, and amplified things a great deal. He did his best to keep it together at work, and his work continued with positive skill,.. his job was deemed "safe & secure" even 5 days prior, but the depression conscerned his employer, and unfortunately, he made the decision to fire Scott... Personally, I feel there was spite involved due to other things I can't go into, but anyway,.. it really doesn't change where we are at this point. The event that took place at work was a pretty unpleasant experience, and very traumatic. The whole experience was just too much for him to handle,.. this only compounds the scrapes we're already in, and being on a medication that was making things worse obviously didn't help. We opted to check him into the hospital, and he stayed there for a week. They immediately changed his medication, and by the next day he felt sooooo much better, plus the wonderful counselors. He is doing wonderful now, and is handling everything remarkably well. He has a fresh confidence about him now, and seems like a whole new person. For that, we are so thankful.
The downside is that he is now unemployed, and the current/local job market does not support his previous salary. And, unemployment is barely going to cover our mortgage and our truck payment. We should temporarily qualify for Food Stamp Assitstance though. A real bummer, but necessary. I think it's likely only to be about $180./mo., but anything will be helpful right now. Another unfortunate issue is not having MPI due to a broker who ill-handled our latest mortgage. He had handled most of everything for us, and just this summer we found out that whereas he had told us our property taxes were all current, hey were not, and he did not set up our escrow either which left us sitting with 2 years of taxes due, plus having to get the escrow established to prepare for next year... Thank God for Scott's parents who gifted us the money to cover it!!! Now though, we realize that in additon, there is also no MPI,.. we've already had MPI on our previous mortgages, but it just figures that we don't when we need it. Oy! Anyway,.. we'll manage. I just can't believe our poor, unfortunate luck. Sure feels like we've been being tested a lot, but our faith shall not waiver... we may be shaking in our boots,.. we're only human, but our faith shall not waiver... "In God We Trust".
So, anyway, now we also are without any health insurnce as of the 30th of this month, which is only 2 weeks from today. Ashley was supposed to have her next MRI in December as well as have her next follow-ups with both her oncologist and her ophthalmologist, and his MRI would have finally been covered 100% by the insurance as we've already established $5,000.00+ for Ashley alone for the year. Anyway, I did manage to get the doctors to move her up by a week or so for the end of this month to make use of the last bit of this coverage,.. her MRI is now scheduled for Monday, November 29th @ 8:15 AM check-in/9:15 scan, and then we see the oncologist @ 1:00 PM. She's also scheduled to go back and see the ophthalmologist the next day, Tuesday, Nov. 30th @ 2:00 PM.
On the plus side, as far as health coverage goes,.. the kids are now eligible to go on the OHP/OMAP/CHIPS at no cost, and so they'll be covered 100% for their health & dental needs. To continue coverage from the employer would cost us over $616.00/mo., and so there's no way we can do that, especially with no income coming in now. I can't believe how much it cost, and it hasn't been the best coverage,.. look at how much out-of-pocket we've had this year just on Ashley! And so anyway, for the first time, Scott & I will likely not have any kind of coverage, although the state gal is looking into something for us for something low-cost through OHP, but we'll see. In the meantime, I've got to get in to see my physician and get my follow-up labs done from my whole mess a couple months ago when my meds got all askew.
Homeschooling has been going well. The girls are doing excellent in their studies. Ashley has a harder time due to her NF, but she is very bright, and once she gets it, she's got it. She is a bit behind for her age group, but honestly, no one can fault her,... you try to keep up with your lessons when you're in pain so much of the time, you know? She gets frustrated easily, but her spirits are always excited and rarin' to go again the next morning. Brittney is doing well... she's excited to start learning to read soon. She has had a harder time grasping things,.. sometimes I wonder if we should suspect any ADD, but other times I think no. At any rate she is a very hard worker, and very bright, and I am very proud of how well she is coming along. Courtney is excelling beautifully,.. she is 8, and in the 3rd grade this year, and I am just so pleased at how well her penmanship is improving. She's doing marvelously at her cursive, and she is an 'A' student in her math,... borrowing/carrying, fractions, dividing, and multiplication,.. even carrying in multiplication, and she's doing excellent in her times tables. We're even touching all the way up to the 9's time tables. Her favorite subjects though are the fun & interesting ones,.. science & history. She's an avid reader now, and reads 3 chapters on average every night before bed in her chapter books. Currently, she's enjoying Black Beauty. I've got her reading the classics,... last year her favorite was Charlotte's Web, and she wrote an awesome summary on every chapter. So far this year, since Sept., she has already enjoyed the original Alice in Wonderland, and is more than half way completed with Black Beauty. She plans to start The Trumpet of the Swan after that. Still waiting on the shelf are such others as Treasure Island, and Little Women. We've also been enjoying the Anne of Green Gables series, and The Chronicles of Narnia.
Well, it's late, and so I need to get to bed before it's time to start a new day. The kids & I have all had the latest 'bug', and fought hard to kep it from going into pnuemonia,.. that seemed to be the case for several other individuals lately, especially kids. It's been hanging on pretty tough, but we're pulling through it finally,.. would be nice if we can manage to have it be THE nasty bug for the winter, wouldn't it? I'm keeping my fingers crossed,...
The past month and a half especially have been the most difficult,.. Scott's has been battling severe depression for most of this year. It had continued to build and grow,... Ashley's condition, and her recurrent/daily pain, the medical bills, his mom's cancer,.. it was all becoming too much to deal with, although he was trying so hard. He began talking to a Christian counselor, and his physician supplied him with some medication. Unfortunately, that medication added to his condition, and amplified things a great deal. He did his best to keep it together at work, and his work continued with positive skill,.. his job was deemed "safe & secure" even 5 days prior, but the depression conscerned his employer, and unfortunately, he made the decision to fire Scott... Personally, I feel there was spite involved due to other things I can't go into, but anyway,.. it really doesn't change where we are at this point. The event that took place at work was a pretty unpleasant experience, and very traumatic. The whole experience was just too much for him to handle,.. this only compounds the scrapes we're already in, and being on a medication that was making things worse obviously didn't help. We opted to check him into the hospital, and he stayed there for a week. They immediately changed his medication, and by the next day he felt sooooo much better, plus the wonderful counselors. He is doing wonderful now, and is handling everything remarkably well. He has a fresh confidence about him now, and seems like a whole new person. For that, we are so thankful.
The downside is that he is now unemployed, and the current/local job market does not support his previous salary. And, unemployment is barely going to cover our mortgage and our truck payment. We should temporarily qualify for Food Stamp Assitstance though. A real bummer, but necessary. I think it's likely only to be about $180./mo., but anything will be helpful right now. Another unfortunate issue is not having MPI due to a broker who ill-handled our latest mortgage. He had handled most of everything for us, and just this summer we found out that whereas he had told us our property taxes were all current, hey were not, and he did not set up our escrow either which left us sitting with 2 years of taxes due, plus having to get the escrow established to prepare for next year... Thank God for Scott's parents who gifted us the money to cover it!!! Now though, we realize that in additon, there is also no MPI,.. we've already had MPI on our previous mortgages, but it just figures that we don't when we need it. Oy! Anyway,.. we'll manage. I just can't believe our poor, unfortunate luck. Sure feels like we've been being tested a lot, but our faith shall not waiver... we may be shaking in our boots,.. we're only human, but our faith shall not waiver... "In God We Trust".
So, anyway, now we also are without any health insurnce as of the 30th of this month, which is only 2 weeks from today. Ashley was supposed to have her next MRI in December as well as have her next follow-ups with both her oncologist and her ophthalmologist, and his MRI would have finally been covered 100% by the insurance as we've already established $5,000.00+ for Ashley alone for the year. Anyway, I did manage to get the doctors to move her up by a week or so for the end of this month to make use of the last bit of this coverage,.. her MRI is now scheduled for Monday, November 29th @ 8:15 AM check-in/9:15 scan, and then we see the oncologist @ 1:00 PM. She's also scheduled to go back and see the ophthalmologist the next day, Tuesday, Nov. 30th @ 2:00 PM.
On the plus side, as far as health coverage goes,.. the kids are now eligible to go on the OHP/OMAP/CHIPS at no cost, and so they'll be covered 100% for their health & dental needs. To continue coverage from the employer would cost us over $616.00/mo., and so there's no way we can do that, especially with no income coming in now. I can't believe how much it cost, and it hasn't been the best coverage,.. look at how much out-of-pocket we've had this year just on Ashley! And so anyway, for the first time, Scott & I will likely not have any kind of coverage, although the state gal is looking into something for us for something low-cost through OHP, but we'll see. In the meantime, I've got to get in to see my physician and get my follow-up labs done from my whole mess a couple months ago when my meds got all askew.
Homeschooling has been going well. The girls are doing excellent in their studies. Ashley has a harder time due to her NF, but she is very bright, and once she gets it, she's got it. She is a bit behind for her age group, but honestly, no one can fault her,... you try to keep up with your lessons when you're in pain so much of the time, you know? She gets frustrated easily, but her spirits are always excited and rarin' to go again the next morning. Brittney is doing well... she's excited to start learning to read soon. She has had a harder time grasping things,.. sometimes I wonder if we should suspect any ADD, but other times I think no. At any rate she is a very hard worker, and very bright, and I am very proud of how well she is coming along. Courtney is excelling beautifully,.. she is 8, and in the 3rd grade this year, and I am just so pleased at how well her penmanship is improving. She's doing marvelously at her cursive, and she is an 'A' student in her math,... borrowing/carrying, fractions, dividing, and multiplication,.. even carrying in multiplication, and she's doing excellent in her times tables. We're even touching all the way up to the 9's time tables. Her favorite subjects though are the fun & interesting ones,.. science & history. She's an avid reader now, and reads 3 chapters on average every night before bed in her chapter books. Currently, she's enjoying Black Beauty. I've got her reading the classics,... last year her favorite was Charlotte's Web, and she wrote an awesome summary on every chapter. So far this year, since Sept., she has already enjoyed the original Alice in Wonderland, and is more than half way completed with Black Beauty. She plans to start The Trumpet of the Swan after that. Still waiting on the shelf are such others as Treasure Island, and Little Women. We've also been enjoying the Anne of Green Gables series, and The Chronicles of Narnia.
Well, it's late, and so I need to get to bed before it's time to start a new day. The kids & I have all had the latest 'bug', and fought hard to kep it from going into pnuemonia,.. that seemed to be the case for several other individuals lately, especially kids. It's been hanging on pretty tough, but we're pulling through it finally,.. would be nice if we can manage to have it be THE nasty bug for the winter, wouldn't it? I'm keeping my fingers crossed,...
Tuesday, September 28, 2004
Topsy-turvey...
Well, I guess this has been the longest spread in between my postings & updates, but a lot has been taking place, and not all I can go into, or want to, but want you to know that we are getting through, and we'll be okay, I'm sure.
We didn't end up going camping over Labor Day Weekend,.. we just couldn't, and greatly missed getting to go, but now all the more excited for next year.
Speaking of Labor Day,.. ON Labor Day, Ashley had a strange occurance. Her right eye lid was noticebly altered,.. it seemed very 'droopey' as though it could just run right off her sweet little face. Nothing that seemed an emergency though, but more like a nerve was being pinched, and was causing this effect.
Ashley is doing alright. She had her MRI & MRA on the 7th, and she did well. She had a really great anesthesiologist who took time to listen to my conscerns on how Ashley always seems to wake from the anesthetic so grumpy and miserable, and also how much she detests the IV still being in for long after. Most of the time they have been good to remove it quickly after she starts to complain because obviously she's okay then for them to remove it safely, but this anesthesiologist really listened to these conscerns, and she opted to do things a little differently this time. She said that kids generally wake up hard like that if they stay on the gas mask through the whole thing, but that she likes to switch them to the IV anesthetic after they have gone to sleep with the mask, and they run the IV,.. she said they tend to wake up sooo much better, and she also said she had no problem remving the IV as soon as she was safely coming around afterwards, too. Well, this was such a great experience,.. Ashley woke, and was still groggy of course, but she was in a very pleasant mood, and she just looks up at me and says gently, 'Oh, hello, mommy, I want my 'pokey' out",.. just so matter of factly, and it was also then that I noticed, and said, "Look, it's already out", and so that was neat, too,.. the doctor waited there with her, and so as soon as she started to come around and she knew it was safe to remove it, she did,... even before Ashley was coherant quite enough to even know it. That was AWESOME. She also told me how to request this whole procedure again in the future, and so a great big THANK YOU to Dr. Lee!!!!!
After the MRI/MRA, we took the elevator upstairs to the oncologist's office because I wanted to leave a message or see if a nurse could take a quick look at her, even though we didn't have an appointment. I knew Dr. Kanwar would be busy, but I though perhaps somebody could take a message, one, about the occurance with her eye the day before, as well as, two, that Ashley's symptoms were increasing rapidly again, and he had wanted me to notify him when I felt like she needed to go back on her anti-convulsive medication.
Well, he heard that we were out there, and it was getting close to lunch time so he told the nurse to bring us back because he wanted to see her himself. He told them that we live too far away to be told to make an appointment and come back. Then, he finished up with his last patient, and went, HIMSELF, down to the basement to review Ashley's MRI & MRA so he could go ahead and let me know the jist of the results right then as well. He did a full assessment of Ashley, and also said that if it happens again, I can take some shots with my digital camera and email them directly to him at his office so he can review and forward them to her ophthalmologist, too, and they can try to assess what's going on. He is such a kind & caring doctor, and I feel like we are in such good hands... it's difficult to find physicians like that anymore,.. and so when we find doctors that really let you know how much they genuinely care for you and show their deep conscern and desires to make everything better,.. you appreciate them soooooo much!!
He also switched us to a different medication after consulting with our neurologist, too, about our conscerns that the other just wasn't working well. Now, Ashley is on a chewable tablet that is fruit-flavored, tastes good, and she only has to take one HALF at a time. Well, she is now taking a whole one in the mornings, and a half one at night. It's called Carbamazepine, which is a generic for Tegretol. She seems to be doing well on it so far, but no huge improvements yet. We will plan to give this one a try for the next 3 months, and if she just isn't doing better by then, then after the first of the year, in January, he may consider approaching the board to consider her for chemotherapy treatment again.
The MRA did show the cluster again, and at first glance he said he was convinced that it was the tumor somehow pinching or spasming, but on further review with the radiologist, it now appears that it may be too far back from the tumor for it to be what's causing that. Now, the neuro-surgeon is looking at the films to try to determine if this might be something she was born with that really isn't anything out of the ordinary, but just something that is a part of her which may not be ordinary to most films,... something to that effect? Anyway, they are trying to sort it out. In the meantime, Ashley is still taking her pain meds about every 4-6 hours through the day, as she has been for about 8 months now, but the night time ones have subsided that she was experiencing the previous week before the latest scans and going on the new medication.
This new medication has possible side effects, too,... like the other one, can cause dizziness, sleepiness, and so forth. For the other, she had to be monitored for her liver function, but this one can lower her blood count so now that needs to be monitored instead... it still is by running a CBC. She was supposed to have an appointment for a follow-up last Tuesday, and have her labs done, but we had to reschedule for Wednesday afternoon. Then, we had to reschedule again, more on that momentarily,.. and she is now rescheduled for next Tuesday, October 5th, with her doctor's approval. He assured me there is no risk in the delay. Anyway, since nothing has been changing, and we can't seem to make progress on her symptoms, yet she isn't really getting worse either,.. the oncologist has decided that we can probably go ahead and wait a 12 week spread before her next follow-up and MRI, unless things change or worsen in the meantime, then he'll bump her back up again. but, for now,.. 3 months, so she'll have her next MRI the beginning of December. Ashley sees the ophthalmologist again next month, mid-October.
As far as why I had to reschedule Ashley's appointment,.. I had something pretty serious happen with me, but it's all taken care of now, and I'm okay, but I'm really lucky I didn't end up in the hospital. Four years ago, I had Grave's Disease, a type of hyperthyroidism which required me to undero radiation called, Radio-iodine Treatment, which then caused me to go into hypothyroidism. This requires me to take thryoid hormone replacement for the rest of my life. Three weeks ago, my pharmacy decided to switch me to the latest generic without my consent. The Rx was already filled, I was in a hurry, and the copay was 1/2 what my Synthroid was so I just took it and went on my way. Well, supposedly about 98% of people can easily switch from the real deal to the generic without any problems, whereas a rare 2% cannot handle it, and only absorb a little, if any at all, hormone from the generic pill,... Apparently, I am one of those freaks, as usual. So, for 3 weeks, my body has not been recieving this very important hormone, and all of the sudden I was in severe relapse... I had no strength, and couldn't even hold a pen without a fight. The left side of my brain felt like it was being squeezed, my left shoulder & arm hurt, my speech was slurring,.. everything was shutting down on me. Most people with hypothyroidism can go a good couple of weeks off their meds without any real issues, but my levels drop about 10 times faster than the average person. Because of all the stresses we have going on,.. I didn't put 2 & 2 together until I was about ready to have a stroke. My doctor recognized this right away and got me on elevated dosages of my actual Synthroid,.. I was feeling 90% better within a few hours, and have been rebounding ever since so,.. breathe easy, I'm okay! But, I'm very lucky I didn't have anything worse happen. My doctor is running about 8 differen blood tests to check for others also, and I should have the results any time now. Anyway,... enough of that, but it was quite the scare.
We've also had various other happenings occur this last couple of weeks,.. things I'm not at liberty to divulge except to a select few, but I will ask for some pretty strong & serious prayers for our family, and especially for Ashley's daddy. Things are not good... he's getting help, but we need some pretty heavy prayers.
I've been questioning her vision lately,.. it seems her book always winds up up to her nose, and she can't seem to see things well from a distance. So, she has an eye exam scheduled for this Thursday, Sept. 30th @ 2:30 pm.
I think that all about covers things for now... at least what I can tell you. I'll try to make a point of keeping things updated at least weekly again, but this last couple of weeks, well, couple of months,.. have been well,.. difficult in many ways.
Oh!! Ashley will be 5 years old tomorrow on September 29th!!!!!
We didn't end up going camping over Labor Day Weekend,.. we just couldn't, and greatly missed getting to go, but now all the more excited for next year.
Speaking of Labor Day,.. ON Labor Day, Ashley had a strange occurance. Her right eye lid was noticebly altered,.. it seemed very 'droopey' as though it could just run right off her sweet little face. Nothing that seemed an emergency though, but more like a nerve was being pinched, and was causing this effect.
Ashley is doing alright. She had her MRI & MRA on the 7th, and she did well. She had a really great anesthesiologist who took time to listen to my conscerns on how Ashley always seems to wake from the anesthetic so grumpy and miserable, and also how much she detests the IV still being in for long after. Most of the time they have been good to remove it quickly after she starts to complain because obviously she's okay then for them to remove it safely, but this anesthesiologist really listened to these conscerns, and she opted to do things a little differently this time. She said that kids generally wake up hard like that if they stay on the gas mask through the whole thing, but that she likes to switch them to the IV anesthetic after they have gone to sleep with the mask, and they run the IV,.. she said they tend to wake up sooo much better, and she also said she had no problem remving the IV as soon as she was safely coming around afterwards, too. Well, this was such a great experience,.. Ashley woke, and was still groggy of course, but she was in a very pleasant mood, and she just looks up at me and says gently, 'Oh, hello, mommy, I want my 'pokey' out",.. just so matter of factly, and it was also then that I noticed, and said, "Look, it's already out", and so that was neat, too,.. the doctor waited there with her, and so as soon as she started to come around and she knew it was safe to remove it, she did,... even before Ashley was coherant quite enough to even know it. That was AWESOME. She also told me how to request this whole procedure again in the future, and so a great big THANK YOU to Dr. Lee!!!!!
After the MRI/MRA, we took the elevator upstairs to the oncologist's office because I wanted to leave a message or see if a nurse could take a quick look at her, even though we didn't have an appointment. I knew Dr. Kanwar would be busy, but I though perhaps somebody could take a message, one, about the occurance with her eye the day before, as well as, two, that Ashley's symptoms were increasing rapidly again, and he had wanted me to notify him when I felt like she needed to go back on her anti-convulsive medication.
Well, he heard that we were out there, and it was getting close to lunch time so he told the nurse to bring us back because he wanted to see her himself. He told them that we live too far away to be told to make an appointment and come back. Then, he finished up with his last patient, and went, HIMSELF, down to the basement to review Ashley's MRI & MRA so he could go ahead and let me know the jist of the results right then as well. He did a full assessment of Ashley, and also said that if it happens again, I can take some shots with my digital camera and email them directly to him at his office so he can review and forward them to her ophthalmologist, too, and they can try to assess what's going on. He is such a kind & caring doctor, and I feel like we are in such good hands... it's difficult to find physicians like that anymore,.. and so when we find doctors that really let you know how much they genuinely care for you and show their deep conscern and desires to make everything better,.. you appreciate them soooooo much!!
He also switched us to a different medication after consulting with our neurologist, too, about our conscerns that the other just wasn't working well. Now, Ashley is on a chewable tablet that is fruit-flavored, tastes good, and she only has to take one HALF at a time. Well, she is now taking a whole one in the mornings, and a half one at night. It's called Carbamazepine, which is a generic for Tegretol. She seems to be doing well on it so far, but no huge improvements yet. We will plan to give this one a try for the next 3 months, and if she just isn't doing better by then, then after the first of the year, in January, he may consider approaching the board to consider her for chemotherapy treatment again.
The MRA did show the cluster again, and at first glance he said he was convinced that it was the tumor somehow pinching or spasming, but on further review with the radiologist, it now appears that it may be too far back from the tumor for it to be what's causing that. Now, the neuro-surgeon is looking at the films to try to determine if this might be something she was born with that really isn't anything out of the ordinary, but just something that is a part of her which may not be ordinary to most films,... something to that effect? Anyway, they are trying to sort it out. In the meantime, Ashley is still taking her pain meds about every 4-6 hours through the day, as she has been for about 8 months now, but the night time ones have subsided that she was experiencing the previous week before the latest scans and going on the new medication.
This new medication has possible side effects, too,... like the other one, can cause dizziness, sleepiness, and so forth. For the other, she had to be monitored for her liver function, but this one can lower her blood count so now that needs to be monitored instead... it still is by running a CBC. She was supposed to have an appointment for a follow-up last Tuesday, and have her labs done, but we had to reschedule for Wednesday afternoon. Then, we had to reschedule again, more on that momentarily,.. and she is now rescheduled for next Tuesday, October 5th, with her doctor's approval. He assured me there is no risk in the delay. Anyway, since nothing has been changing, and we can't seem to make progress on her symptoms, yet she isn't really getting worse either,.. the oncologist has decided that we can probably go ahead and wait a 12 week spread before her next follow-up and MRI, unless things change or worsen in the meantime, then he'll bump her back up again. but, for now,.. 3 months, so she'll have her next MRI the beginning of December. Ashley sees the ophthalmologist again next month, mid-October.
As far as why I had to reschedule Ashley's appointment,.. I had something pretty serious happen with me, but it's all taken care of now, and I'm okay, but I'm really lucky I didn't end up in the hospital. Four years ago, I had Grave's Disease, a type of hyperthyroidism which required me to undero radiation called, Radio-iodine Treatment, which then caused me to go into hypothyroidism. This requires me to take thryoid hormone replacement for the rest of my life. Three weeks ago, my pharmacy decided to switch me to the latest generic without my consent. The Rx was already filled, I was in a hurry, and the copay was 1/2 what my Synthroid was so I just took it and went on my way. Well, supposedly about 98% of people can easily switch from the real deal to the generic without any problems, whereas a rare 2% cannot handle it, and only absorb a little, if any at all, hormone from the generic pill,... Apparently, I am one of those freaks, as usual. So, for 3 weeks, my body has not been recieving this very important hormone, and all of the sudden I was in severe relapse... I had no strength, and couldn't even hold a pen without a fight. The left side of my brain felt like it was being squeezed, my left shoulder & arm hurt, my speech was slurring,.. everything was shutting down on me. Most people with hypothyroidism can go a good couple of weeks off their meds without any real issues, but my levels drop about 10 times faster than the average person. Because of all the stresses we have going on,.. I didn't put 2 & 2 together until I was about ready to have a stroke. My doctor recognized this right away and got me on elevated dosages of my actual Synthroid,.. I was feeling 90% better within a few hours, and have been rebounding ever since so,.. breathe easy, I'm okay! But, I'm very lucky I didn't have anything worse happen. My doctor is running about 8 differen blood tests to check for others also, and I should have the results any time now. Anyway,... enough of that, but it was quite the scare.
We've also had various other happenings occur this last couple of weeks,.. things I'm not at liberty to divulge except to a select few, but I will ask for some pretty strong & serious prayers for our family, and especially for Ashley's daddy. Things are not good... he's getting help, but we need some pretty heavy prayers.
I've been questioning her vision lately,.. it seems her book always winds up up to her nose, and she can't seem to see things well from a distance. So, she has an eye exam scheduled for this Thursday, Sept. 30th @ 2:30 pm.
I think that all about covers things for now... at least what I can tell you. I'll try to make a point of keeping things updated at least weekly again, but this last couple of weeks, well, couple of months,.. have been well,.. difficult in many ways.
Oh!! Ashley will be 5 years old tomorrow on September 29th!!!!!
Tuesday, August 24, 2004
Watch the rain...
Ashley has been accepted by two wonderful organizations to be a recipient for their beautiful quilts. Both of these organizations, Love Quilts and Quilting Angels, create magnificant quilts for sick children. Not just terminal kids, as many organizations, but these organizations also cater to children with life-long illnesses & disorders like Ashley. Women from around the world help to make the quilt squares, and a lot of time, effort, and most of all, love, is put into these quilts, and it is truly an honor to recieve such a tremendous, treasured gift. Ashley's quilts are anticipated to be created and delivered sometime mid-2005, and we are very excited for both of them!! We will keep you posted on when Ashley gets posted to their sites,.. in the meantime, please take time to check them out. lovequilts.org and quiltingangels.org
Oh! Ashley lost her first tooth!! About a week ago, the girls were all playing & rolling around, and out it popped!! She was soooooo excited, and she thinks that the Tooth Fairy is a pretty awesome gal!! We'll try to get some new pics posted this week of her new grin!! She looks too cute with that missing tooth! Actually, all THREE of the girls are missing teeth now!
Ashley also saw her oncologist again yesterday... her next MRI will be sometime in the next couple of weeks. She'll also have another follow-up with him, as well as her ophthalmologist. She is on a break from her anti-seizure medication, but will go back on probably in the next month or so. At that time, she'll change to double dosages twice a day. At this next MRI, she will also have another MRA.
Scott's mom, Carol, started chemo again on the 17th. This starts her thirdt round in 2 1/2 years,.. so far, it seems to be going okay on her. She hasn't gotten terribly sick this time. She goes in for a nuclear scan next Monday. She is, of course, pretty tired, and I worry about her getting enough rest, but she is strong. I just love her so!
Well, another week and a half and we will get to go camping again for Labor Day Weekend, and we can't wait! It is such a great chance to get away and just 'breathe',.. I know I've said that many times before, but these excursions mean so much to us. It's such a nice break, getting up into the mountains to just relax and enjoy ourselves...
And on that note, I think I'll wrap this up. I think it sounds like a good time to fix a hot cup of herbal tea, and sit & watch the rain.
Oh! Ashley lost her first tooth!! About a week ago, the girls were all playing & rolling around, and out it popped!! She was soooooo excited, and she thinks that the Tooth Fairy is a pretty awesome gal!! We'll try to get some new pics posted this week of her new grin!! She looks too cute with that missing tooth! Actually, all THREE of the girls are missing teeth now!
Ashley also saw her oncologist again yesterday... her next MRI will be sometime in the next couple of weeks. She'll also have another follow-up with him, as well as her ophthalmologist. She is on a break from her anti-seizure medication, but will go back on probably in the next month or so. At that time, she'll change to double dosages twice a day. At this next MRI, she will also have another MRA.
Scott's mom, Carol, started chemo again on the 17th. This starts her thirdt round in 2 1/2 years,.. so far, it seems to be going okay on her. She hasn't gotten terribly sick this time. She goes in for a nuclear scan next Monday. She is, of course, pretty tired, and I worry about her getting enough rest, but she is strong. I just love her so!
Well, another week and a half and we will get to go camping again for Labor Day Weekend, and we can't wait! It is such a great chance to get away and just 'breathe',.. I know I've said that many times before, but these excursions mean so much to us. It's such a nice break, getting up into the mountains to just relax and enjoy ourselves...
And on that note, I think I'll wrap this up. I think it sounds like a good time to fix a hot cup of herbal tea, and sit & watch the rain.
Monday, August 09, 2004
My cup runneth over!
I'm not even sure where to start,.. it's almost midnight, but I can't sleep without posting on this. Scott got home about a half hour ago, and he had huge news,.. news that has left me spinning & reeling between emotions of happiness, tears, and sheer shock. I don't know if I will even be able to put this into words that it deserves, but I'm going to try so please bear with me,.. it's just the most incredible thing that I feel like I'm nearly having an out of body experience.
Tonight was the monthly business meeting at the Fire Dept., and as I understand it,.. a great deal was discussed about Ashley, her NF, and our mounding medical bills for her treatment. For those of you whom are unfamiliar, I want to tell you something,.. they don't call it a 'Brotherhood' for nothing. There is a great deal of pride & honor built up in the family that is firefighters. "Never leave a man behind", they say,.. well, let me tell you, they don't. And as it has been proven on this very night,.. that doesn't just apply on-the-job.
After learning about Ashley in casual conversation last week, the Deputy Chief of our district decided to take on the task of bringing Ashley's circumstances to light in the hearts of everyone he knows. And for starters, he put together information from his conversation with Scott, as well as Ashley's website, and tonight our fellow FF brothers & sisters learned about Ashley and her NF. They learned about how fast her medical needs build up in out-of-pocket costs, and then,.. then, they pulled together to contribute to Ashley's Fund. Tonight, the FD Board voted to donate a large sum of $ to Ashley's Fund, and then, if that weren't generous enough,.. the men and women of Station's #1, #2, #3, #4, #5, #6, and #7 passed around a fireman's helmet and took up a personal collection!! This was additional money out of these individual's own pockets!! Several people came up to Scott, and told him of other ways that they want to help, personally, and apparently a commitee is even being put together for further assistance... I am nearly speechless.
I just don't know what to say that will adequateIy describe the feelings of amazement and gratitude I am feeling. I have been a fireman's wife for nearly 12 years now, and I've always been so proud of that honor, but I have to tell you,.. my cup just runneth over!! I don't know whether to laugh or cry or both, but believe me, I've done it all tonight... I'm just in utter shock.
I never would have dreamed that this kind of help & support would come like this,.. when I think of things happening like this, I usually think of families who have children so much worse off, and so in a way, I guess I feel sort of strange,.. like, do we deserve this when so many others are out there in tougher situations? But, we have all these people surrounding us now, and they are so kind, and so caring, they're so supportive and so generous, and they keep reassuring us that we do deserve help... that we don't have to wait for that help until we've completely gone under... that instead, we deserve help to keep us from getting to that point. And that just amazes me,... it utterly amazes me!!
God filled that room with angels tonight... and even though I physically wasn't there,.. I felt their touch. I know Scott definitely did, too. This is such a generous gift that is unmeasureable in words, but we truly are so greatful.
I can't thank you all enough,.. each & every one of you with the MCFD!
Tonight was the monthly business meeting at the Fire Dept., and as I understand it,.. a great deal was discussed about Ashley, her NF, and our mounding medical bills for her treatment. For those of you whom are unfamiliar, I want to tell you something,.. they don't call it a 'Brotherhood' for nothing. There is a great deal of pride & honor built up in the family that is firefighters. "Never leave a man behind", they say,.. well, let me tell you, they don't. And as it has been proven on this very night,.. that doesn't just apply on-the-job.
After learning about Ashley in casual conversation last week, the Deputy Chief of our district decided to take on the task of bringing Ashley's circumstances to light in the hearts of everyone he knows. And for starters, he put together information from his conversation with Scott, as well as Ashley's website, and tonight our fellow FF brothers & sisters learned about Ashley and her NF. They learned about how fast her medical needs build up in out-of-pocket costs, and then,.. then, they pulled together to contribute to Ashley's Fund. Tonight, the FD Board voted to donate a large sum of $ to Ashley's Fund, and then, if that weren't generous enough,.. the men and women of Station's #1, #2, #3, #4, #5, #6, and #7 passed around a fireman's helmet and took up a personal collection!! This was additional money out of these individual's own pockets!! Several people came up to Scott, and told him of other ways that they want to help, personally, and apparently a commitee is even being put together for further assistance... I am nearly speechless.
I just don't know what to say that will adequateIy describe the feelings of amazement and gratitude I am feeling. I have been a fireman's wife for nearly 12 years now, and I've always been so proud of that honor, but I have to tell you,.. my cup just runneth over!! I don't know whether to laugh or cry or both, but believe me, I've done it all tonight... I'm just in utter shock.
I never would have dreamed that this kind of help & support would come like this,.. when I think of things happening like this, I usually think of families who have children so much worse off, and so in a way, I guess I feel sort of strange,.. like, do we deserve this when so many others are out there in tougher situations? But, we have all these people surrounding us now, and they are so kind, and so caring, they're so supportive and so generous, and they keep reassuring us that we do deserve help... that we don't have to wait for that help until we've completely gone under... that instead, we deserve help to keep us from getting to that point. And that just amazes me,... it utterly amazes me!!
God filled that room with angels tonight... and even though I physically wasn't there,.. I felt their touch. I know Scott definitely did, too. This is such a generous gift that is unmeasureable in words, but we truly are so greatful.
I can't thank you all enough,.. each & every one of you with the MCFD!
Little 'spy'
Ashley has been doing alright, although she has been having more pain episodes today. She had a pretty nasty one this afternoon that was pretty difficult to bear, and it was difficult to see her go through another one so intense like that. She has been doing better about taking her anti-seizure medication though... it still takes encouragement, but she's doing a lot better about it again.
Her teeth are still very, very loose, and she asks me to pray every night that they will come out so that the Tooth Fairy can come visit her,... after my last post where we realized she HAD her first loose teeth,.. well, remember how I said that the other girls have loose teeth also? The very next morning, Brittney lost one of her's! We noticed that she has another loose one also now, and if Courtney's other one doesn't fall out here pretty soon, we may need to go in and have it pulled,... it's causing her a lot of discomfort, but just won't quite pop out. Ashley tried to stay up to spy on the Tooth Fairy as she came for Brittney's tooth, but alas she just couldn't catch her!
Her teeth are still very, very loose, and she asks me to pray every night that they will come out so that the Tooth Fairy can come visit her,... after my last post where we realized she HAD her first loose teeth,.. well, remember how I said that the other girls have loose teeth also? The very next morning, Brittney lost one of her's! We noticed that she has another loose one also now, and if Courtney's other one doesn't fall out here pretty soon, we may need to go in and have it pulled,... it's causing her a lot of discomfort, but just won't quite pop out. Ashley tried to stay up to spy on the Tooth Fairy as she came for Brittney's tooth, but alas she just couldn't catch her!
Thursday, July 29, 2004
Loose toof!
Well, Ashley has some exciting news,.. she has her first loose teeth!! This is very, very exciting to her because she has been waiting soooooo long for it to finally happen! Both of her sisters have lost several teeth already, and she's seen the exciting 'evidence' of the Tooth Fairy's visits time and again. Brittney even tricked the poor Tooth Fairy once with a fake molar she got from her cousin! It worked the one time, but we had a little talk about how it was wrong to trick her, and she promised never to do it again,.. but she still thought it was pretty cool to get away with it that one time! LOL! Anyway, little Bug has been waiting her turn for sooooooo long, and has made me check her teeth periodically for the last year, at least, LOL. Anyway, we actually hadn't checked them lately, but she bopped her mouth this evening, and then said, "hey, my tooth wiggled!!",.. almost out of habit, I started to say, 'not yet, sweetie, you're still too young...' when I realized, holy smokes,.. she's going to be FIVE years old in just 8 weeks,.. OMG, she IS old enough!! So instead, I told her to come let mommy check, and low & behold, BOTH of her bottom two front teeth wiggled. In fact, they are more than mere wiggly,.. they are loooooooosey goosey!! I'd be surprised if they take more than a couple of weeks to come out.
The Tooth Fairy is going to be busy at OUR house here shortly because we've got at least 4 loose teeth between all three girls, and our Tooth Fairy got something started she probably should have thought through better when she got started 3 years ago,... !! Our Tooth Fairy, the doll that she is, LOL,.. leaves not just a shiny quarter,.. no, our Tooth Fairy is a rival among Tooth Fairies,.. our Tooth Fairy leaves a special glittery bag (that magically disappears afterwards when nobody is looking) filled with goodies,.. a new toothbrush, toothpaste, floss, sugarless gum, stickers, hair foo-foos, nail polish, flavored chapstick, and other lil' goodies (Thank you, Dollar-Tree!!), not to mention 3-5, in CA$H,... (to quote Courtney: "My Tooth Fairy ROCKS!) She also leaves a trail of Tooth Fairy 'Dust' (aka confetti) from their pillow to the windowsill,.. (sometimes, they roll over on them while they're sleeping and a couple stain a tiny star, or whatever shape they happen to be, on their cheek,... we call them Tooth Fairy 'kisses'!). What a mess to clean up the next day,.. Oy! If I could go back in time,.. I'd smack some sense into myself!! No, not really,.. I love it! And good intentions,... adding to those precious memories they'll treasure their whole lives, but didn't think about having times when the Tooth Fairy would need visit this household 3, 4, or 5 times within a mere month or two!! LOL,.. Thank goodness our Tooth Fairy 'retires' when kids turn 10 years old,.. Courtney wasn't too happy to learn that as she only has 2 years left, but que sera sera! LOL
Anyway,... Ashley's VERY excited, and already made her round of phonecalls to her Grandma and Nana. Daddy is on duty tonight @ the Fire Dept. so he'll have to wait for news of her 'wiggley toofs' until he gets home.
The Tooth Fairy is going to be busy at OUR house here shortly because we've got at least 4 loose teeth between all three girls, and our Tooth Fairy got something started she probably should have thought through better when she got started 3 years ago,... !! Our Tooth Fairy, the doll that she is, LOL,.. leaves not just a shiny quarter,.. no, our Tooth Fairy is a rival among Tooth Fairies,.. our Tooth Fairy leaves a special glittery bag (that magically disappears afterwards when nobody is looking) filled with goodies,.. a new toothbrush, toothpaste, floss, sugarless gum, stickers, hair foo-foos, nail polish, flavored chapstick, and other lil' goodies (Thank you, Dollar-Tree!!), not to mention 3-5, in CA$H,... (to quote Courtney: "My Tooth Fairy ROCKS!) She also leaves a trail of Tooth Fairy 'Dust' (aka confetti) from their pillow to the windowsill,.. (sometimes, they roll over on them while they're sleeping and a couple stain a tiny star, or whatever shape they happen to be, on their cheek,... we call them Tooth Fairy 'kisses'!). What a mess to clean up the next day,.. Oy! If I could go back in time,.. I'd smack some sense into myself!! No, not really,.. I love it! And good intentions,... adding to those precious memories they'll treasure their whole lives, but didn't think about having times when the Tooth Fairy would need visit this household 3, 4, or 5 times within a mere month or two!! LOL,.. Thank goodness our Tooth Fairy 'retires' when kids turn 10 years old,.. Courtney wasn't too happy to learn that as she only has 2 years left, but que sera sera! LOL
Anyway,... Ashley's VERY excited, and already made her round of phonecalls to her Grandma and Nana. Daddy is on duty tonight @ the Fire Dept. so he'll have to wait for news of her 'wiggley toofs' until he gets home.
*difficult*
Ashley is doing well, although still fighting me pretty hard on taking her medication so her pain episodes have been more frequent again. It is difficult for her to understand that she will start feeling better again if she will just take her medicine regularly like she's supposed to. We could use prayers on this.
Tuesday, July 27, 2004
A little less fuss!
Ashley is doing well,.. it's taking some coaxing to get her to take her Depakote, and get her back into routine,.. she's been really fighting me off on it, but we know it helps so please pray for her will to soften so she'll take her meds with a little less fuss. Thx!!
Monday, July 26, 2004
Oops!
Just wanted to let you all know that Ashley's appointment with the Neurologist was canceled, Friday,... they agreed that for just being a follow-up appointment it would be much easier to just obtain copies of all of the oncologist's notes, and so forth, which would be better information that my own rendition, LOL, not to mention save us an un-necessary $40 copay.
As far as her appointment with Oncologist goes,... well, what can I say but,.. Oops! It was an early appointment, which I don't ordinarily make because we just aren't good at being early risers, and well,..we overslept! Since Ashley seems to not be having any changes occuring though, I asked if we couldn't reschedule for next month instead, and so they agreed that was a feesable request. It saves an additonal & un-necessary $40 copay for this month,.. we just saved $80 for this month! Anyway,.. her next follow-up with him is now scheduled for Aug. 23rd '04.
As far as her appointment with Oncologist goes,... well, what can I say but,.. Oops! It was an early appointment, which I don't ordinarily make because we just aren't good at being early risers, and well,..we overslept! Since Ashley seems to not be having any changes occuring though, I asked if we couldn't reschedule for next month instead, and so they agreed that was a feesable request. It saves an additonal & un-necessary $40 copay for this month,.. we just saved $80 for this month! Anyway,.. her next follow-up with him is now scheduled for Aug. 23rd '04.
Thursday, July 22, 2004
It's a keeper!
Ashley had her appointment with the ophthalmologist on Monday. Sorry I haven't updated on that until now, but this week has been pretty busy, as most are. She looked adorable, and got a lot of attention as we left,.. wearing one of her special hats, and a pair of dark sunglasses to protect her eyes after having her eyes fully dilated. It takes hours for them to go back to normal, and even a little light can be terrible painful.
Anyway, the doctor appointment Monday, it went well though,.. there are no visible changes in her vision, and he, too, is still baffled at the eye pain epsiodes. We go back for another follow-up in 3 months,.. Tuesday, October 19th.
Speaking of the eye pain episodes,.. I didn't really think that the anti-seizure medication had really been showing much improvement for her, but this past week, we pretty much eliminated her taking it (she is getting pretty sick of it, and so I thought I'd give her a break in order to see what would happen). Anyway, after several days, the really bad episodes came back. So, although she's not happy about it, we will be continuing the medication!! Apparently, it's been helping more than I had even realized. The last few weeks have been so busy that I hadn't really noticed that the episodes, although still fairly regular, had not been so high scale in severity. I noticed that w/o the medication, that the neck pain also came back, whereas it seemed to have subsided. She also had a few episodes wake her in the night which has been rare. I'd say, for now, the medication is definitely a keeper! Anyway, something to discuss further with the oncologist when we see him this Monday. I'm wondering if we should consider increasing the dosage a little bit more,.. perhaps we'd eliminate even more of these occurances, and severity, but at the same time, I don't want her liver to be put at any extra risk than absolutely necessary either.
I also want to discuss any possibility of pushing her MRIs out a little farther,... we just can't handle adding another $1,000 -$2,000. to the pile every couple of months. They're eating us alive.
Anyway, I'm trying to get more involved now, too, with the Oregon NF Support Chapter, as well as people linked to the National Neurfibromatosis Foundation,... to see if there are any other alternatives, suggestions, or whatnot they can help us come up with before we're burried in medical debt. I'm making new NF friends, too, which is excellent support to have in addition to all of you. I have a new friend, Melinda, whom also has NF, as does her daughter Shaylee, who is a year younger than Ashley. Shaylee & her family live very near to us,.. they are only about a 25 minute drive away. Please also keep Shaylee in your prayers when you are remembering Ashley,.. Shaylee is currently undergoing chemotherapy for her bilateral optic nerve gliomas, and she ended up spending this entire past weekend in the hospital due to a spike in her temperature. She may have contracted something which can be very, very dangerous when you've just had treatment. A sudden high fever can be a first sign of this. We know about this because Ashley's Grandma Carol goes through chemo for her cancer. Anyway, please keep little Shaylee, her parents, her two brothers, and her baby sister in your prayers. They need them, too!
Have a gr8 day,.. the weather is awesome, just a bit HOT,.. they said they aren't ruling us out on getting into the TRIPLE DIGITS before the weekend! Well, they sure weren't kidding,.. it's currently 102 degrees here right now! Ashley's daddy has been working in southern Oregon all week, and he said today that it was 110 by Noon!
Oh, before I close today,.. Remembering Ashley's Grandma, Carol,... Her CH125 counts went from 11 to 23 in the couple of months before the last, then just in this past month she went up further to 34. By the time she has her CAT scan and further bloodwork, prior to starting any chemotherapy again,.. another 3-4 weeks will have gone by. The doctor did tell her that as long as her numbers stay under 50 that there is no reason to panic yet, but we are conscerned about letting it get so close to that. By the time she starts her third round of chemo, her counts could be only a few digits below that so please pray that God will sustain her numbers, and that they will show a positive reduction rate with this next round of chemotherapy. Please also pray for the pain & discomfort that she has as a result of certain tumors, to be diminished... she needs our prayers for peace & strength, too. I know she has to be just as worried as we are, although she's such a trooper she never likes to let anyone know when she's struggling with it, and never wants to worry anyone else.
That's just the incredible person she is,.. We love you, Gma H!!! (((BIG-BIG HUGS)))
Thank you all, again, for all of your prayers & support for both Ashley (& her Gma),.. I'll plan to post again after we see the oncologist Monday. Until then,.. have a safe & happy weekend, drink lots of water, and don't forget your sunblock!!
Anyway, the doctor appointment Monday, it went well though,.. there are no visible changes in her vision, and he, too, is still baffled at the eye pain epsiodes. We go back for another follow-up in 3 months,.. Tuesday, October 19th.
Speaking of the eye pain episodes,.. I didn't really think that the anti-seizure medication had really been showing much improvement for her, but this past week, we pretty much eliminated her taking it (she is getting pretty sick of it, and so I thought I'd give her a break in order to see what would happen). Anyway, after several days, the really bad episodes came back. So, although she's not happy about it, we will be continuing the medication!! Apparently, it's been helping more than I had even realized. The last few weeks have been so busy that I hadn't really noticed that the episodes, although still fairly regular, had not been so high scale in severity. I noticed that w/o the medication, that the neck pain also came back, whereas it seemed to have subsided. She also had a few episodes wake her in the night which has been rare. I'd say, for now, the medication is definitely a keeper! Anyway, something to discuss further with the oncologist when we see him this Monday. I'm wondering if we should consider increasing the dosage a little bit more,.. perhaps we'd eliminate even more of these occurances, and severity, but at the same time, I don't want her liver to be put at any extra risk than absolutely necessary either.
I also want to discuss any possibility of pushing her MRIs out a little farther,... we just can't handle adding another $1,000 -$2,000. to the pile every couple of months. They're eating us alive.
Anyway, I'm trying to get more involved now, too, with the Oregon NF Support Chapter, as well as people linked to the National Neurfibromatosis Foundation,... to see if there are any other alternatives, suggestions, or whatnot they can help us come up with before we're burried in medical debt. I'm making new NF friends, too, which is excellent support to have in addition to all of you. I have a new friend, Melinda, whom also has NF, as does her daughter Shaylee, who is a year younger than Ashley. Shaylee & her family live very near to us,.. they are only about a 25 minute drive away. Please also keep Shaylee in your prayers when you are remembering Ashley,.. Shaylee is currently undergoing chemotherapy for her bilateral optic nerve gliomas, and she ended up spending this entire past weekend in the hospital due to a spike in her temperature. She may have contracted something which can be very, very dangerous when you've just had treatment. A sudden high fever can be a first sign of this. We know about this because Ashley's Grandma Carol goes through chemo for her cancer. Anyway, please keep little Shaylee, her parents, her two brothers, and her baby sister in your prayers. They need them, too!
Have a gr8 day,.. the weather is awesome, just a bit HOT,.. they said they aren't ruling us out on getting into the TRIPLE DIGITS before the weekend! Well, they sure weren't kidding,.. it's currently 102 degrees here right now! Ashley's daddy has been working in southern Oregon all week, and he said today that it was 110 by Noon!
Oh, before I close today,.. Remembering Ashley's Grandma, Carol,... Her CH125 counts went from 11 to 23 in the couple of months before the last, then just in this past month she went up further to 34. By the time she has her CAT scan and further bloodwork, prior to starting any chemotherapy again,.. another 3-4 weeks will have gone by. The doctor did tell her that as long as her numbers stay under 50 that there is no reason to panic yet, but we are conscerned about letting it get so close to that. By the time she starts her third round of chemo, her counts could be only a few digits below that so please pray that God will sustain her numbers, and that they will show a positive reduction rate with this next round of chemotherapy. Please also pray for the pain & discomfort that she has as a result of certain tumors, to be diminished... she needs our prayers for peace & strength, too. I know she has to be just as worried as we are, although she's such a trooper she never likes to let anyone know when she's struggling with it, and never wants to worry anyone else.
That's just the incredible person she is,.. We love you, Gma H!!! (((BIG-BIG HUGS)))
Thank you all, again, for all of your prayers & support for both Ashley (& her Gma),.. I'll plan to post again after we see the oncologist Monday. Until then,.. have a safe & happy weekend, drink lots of water, and don't forget your sunblock!!
Tuesday, July 13, 2004
*healing*
It's been a couple of weeks since my last post,.. we got the chance to take some much needed vacation time. We are all doing well, and hope you are too.
Ashley is still having her eye pain episodes. At this point, I would have to say that we're still not seeing any significant help in using the anti-seizure medication. She sees the oncologist again in a couple more weeks, and so we'll see if he thinks she should keep using it for awhile longer before we decide to discontinue. She is also scheduled to see the ophthalmologist next Monday so we'll see if there are any changes in her vision.
Brittney's arm seems to be healing very well. She doesn't complain of any pain, which makes it even harder to keep her easy on it, because she's such a little monkey-britches, but she's feeling great, and that's important.
We had a wonderful time up camping. Daddy was able to get time off for us to go for 5 days & 5 nights, and it felt sooooo good. We just love being up there, and we really enjoy spending time with our group. They're good people, and with many of them, it's like hanging out with family... so we sort of 'reunion' with them three times a year, and we look forward to every time. It did feel good to be back home though,.. sometimes in all the business of life, you can forget just how good it feels to have your own safe place like this, but I could never forget how greatful I am for it.
We were home for 3 days, and then Scott & I took a little get-away vacation for ourselves for 4 more days & nights. He had vacation time built up, and we hadn't gone anywhere like that without the kids in three years, and so it was good for us to have that time together. We had some 'bump's with some friends in the trip, but it's okay, and we're moving on from them. Trip could have been better. We've decided we'll plan our next excursion exclusively. 'Nuf said. All in all we had a great time though, and it was a much needed get-away.
It feels awesome to be back home. I did get some devestating news about one of my family members, and so I ask for prayers w/o my disclosing any information on the matter. I have another family member who could anonimously use your prayers as well. The one I can mention is Scott's mom, who needs continued prayers for her cancer. Her levels are continuing to rise even more since I mentioned it here nearly a month ago, and she has to start chemotherapy again. They're going to do another CAT scan in a couple of weeks, and then more bloodwork after that before they decide what to do next for sure, she said. Please remember her daily!!
I will plan to post again after the beginning of the week,.. Monday evening or Tuesday morning. Ashley's appointment is Monday afternoon.
Ashley is still having her eye pain episodes. At this point, I would have to say that we're still not seeing any significant help in using the anti-seizure medication. She sees the oncologist again in a couple more weeks, and so we'll see if he thinks she should keep using it for awhile longer before we decide to discontinue. She is also scheduled to see the ophthalmologist next Monday so we'll see if there are any changes in her vision.
Brittney's arm seems to be healing very well. She doesn't complain of any pain, which makes it even harder to keep her easy on it, because she's such a little monkey-britches, but she's feeling great, and that's important.
We had a wonderful time up camping. Daddy was able to get time off for us to go for 5 days & 5 nights, and it felt sooooo good. We just love being up there, and we really enjoy spending time with our group. They're good people, and with many of them, it's like hanging out with family... so we sort of 'reunion' with them three times a year, and we look forward to every time. It did feel good to be back home though,.. sometimes in all the business of life, you can forget just how good it feels to have your own safe place like this, but I could never forget how greatful I am for it.
We were home for 3 days, and then Scott & I took a little get-away vacation for ourselves for 4 more days & nights. He had vacation time built up, and we hadn't gone anywhere like that without the kids in three years, and so it was good for us to have that time together. We had some 'bump's with some friends in the trip, but it's okay, and we're moving on from them. Trip could have been better. We've decided we'll plan our next excursion exclusively. 'Nuf said. All in all we had a great time though, and it was a much needed get-away.
It feels awesome to be back home. I did get some devestating news about one of my family members, and so I ask for prayers w/o my disclosing any information on the matter. I have another family member who could anonimously use your prayers as well. The one I can mention is Scott's mom, who needs continued prayers for her cancer. Her levels are continuing to rise even more since I mentioned it here nearly a month ago, and she has to start chemotherapy again. They're going to do another CAT scan in a couple of weeks, and then more bloodwork after that before they decide what to do next for sure, she said. Please remember her daily!!
I will plan to post again after the beginning of the week,.. Monday evening or Tuesday morning. Ashley's appointment is Monday afternoon.
Tuesday, June 29, 2004
'Sprinkles'
Just a quick update, we had a consult with the nurse at the oncologist's office this morning... She's so nice. Ashley has been having just an awful time taking the Depakene syrup,.. she really hates it, and it seems to irritate her throat... I'm sure it must just taste awful. None of us can see making her go through that so they were able to easily switch her to Depakote capsules instead. I'll pick them up from the pharmacy this afternoon. These, we'll be able to pull apart and then dump the contents, lovingly called by the staff as "sprinkles", into pudding cups for her. This will also be nice for when we are away from home,.. we can easily take snackpacks with us, and I'll be thrilled not to have sticky syrup residue everywhere, LOL. Now her ladybug backpack will have a daily purpose instead of just for going to appointments... now it will go with us wherever we go, carrying her snackpacks & 'sprinkles'.
Monday, June 28, 2004
New bone growth!
Hello All. Ashley is doing alright. Her eye pain is increasing again, but somehow I anticipated it would. Overall though, she's doing okay.
Brittney saw her orthopedic surgeon this afternoon for a follow-up. She's been doing well. Today's x-rays indeed showed new bone growth already repairing the break, just as he had said we'd see at this point. It was kind of neat to see. Anyway, she can stop wearing the sling, unless her arm starts to get sore, then we should put it back on, along with taking a dose of Tylenol, until it feels better again, but for the most part, she's free from the sling so she's pretty happy about that. She still has to keep it protected for at least the next month, but he would rather the next two months,.. no doing anything that could pose risk to reinjurying the arm because he said it would just snap it again, and she'd have to go through rehealing her broken arm all over again. She didn't much like the sound of that, so she promised to be careful. She's still having difficulty coming to terms with the fact that she can't ride her quad the whole summer, but worse than that, she's having a harder time with not being allowed to swing on the backyard swingset,.. one of her favorite passtimes, but the doctor said nope. She goes back for another follow-up in 6 weeks.
We're still taking it one day at a time,.. and we thank you all for your support & prayers, as always!
Well, We hope everyone has a great holiday weekend. We will be camping in the mountains again,.. it's always such a nice break from everything. We'll get to spend 4 days & 5 nights this trip, and so we are really looking forward to it. Nice to get away and just 'breathe' once in awhile.
Ya'll have a safe & happy 4th of July. (((hugs)))
Brittney saw her orthopedic surgeon this afternoon for a follow-up. She's been doing well. Today's x-rays indeed showed new bone growth already repairing the break, just as he had said we'd see at this point. It was kind of neat to see. Anyway, she can stop wearing the sling, unless her arm starts to get sore, then we should put it back on, along with taking a dose of Tylenol, until it feels better again, but for the most part, she's free from the sling so she's pretty happy about that. She still has to keep it protected for at least the next month, but he would rather the next two months,.. no doing anything that could pose risk to reinjurying the arm because he said it would just snap it again, and she'd have to go through rehealing her broken arm all over again. She didn't much like the sound of that, so she promised to be careful. She's still having difficulty coming to terms with the fact that she can't ride her quad the whole summer, but worse than that, she's having a harder time with not being allowed to swing on the backyard swingset,.. one of her favorite passtimes, but the doctor said nope. She goes back for another follow-up in 6 weeks.
We're still taking it one day at a time,.. and we thank you all for your support & prayers, as always!
Well, We hope everyone has a great holiday weekend. We will be camping in the mountains again,.. it's always such a nice break from everything. We'll get to spend 4 days & 5 nights this trip, and so we are really looking forward to it. Nice to get away and just 'breathe' once in awhile.
Ya'll have a safe & happy 4th of July. (((hugs)))
Friday, June 25, 2004
Sunday, June 20, 2004
Hyster-versary
Today marks 2 years since I had my hysterectomy,.. I can't believe it's already been that long. My quality of life has soared since my surgery. It was a difficult thing to face and go through, but it was certainly worth it in the long run. I don't have much else to say about it, but for me,.. this is a special day.
Friday, June 18, 2004
Embrace Grace...
I came across something this morning in one of my favorite books, 'God Always Has A Plan B - For Women',.. given to me a couple of years ago, when I went through my hysterectomy, by my friend, Andrea, my dear, dear friend that I talked to you about yesterday. I loved it so much that I gave a copy to her when she had her's the following week. I have since given copies to other friends, too. I enjoy going through it often, and highly reccommend it to anyone who is in need of inspiration. It's an awesome book. Anyway, thumbing through it again this morning, I came across this great passage that I had marked before,.. I thought I'd like to share it so that's why I'm posting it here today.
LAUGHING WITH THE LORD by Barbara Johnson
'Are you going through a difficult struggle? Sit down and hold God's gift in your lap. Slowly untie the ribbons. Now remove the lid on the box. Reach beneath the tissue paper. It's party time! In the middle of your trial, God has prepared a celebration. Jesus triumphed over the worst, and now he will help you to do the same.
'How will he do it? In a way you didn't expect. Jesus knows about everything you're going through, and he has made arrangements for you to look back on it---and laugh. He is going to bring you laughter and liberty into your circumstances. Wherever Jesus is, there's a party going on.
'No, life won't ever be perfect. Even in the land of milk and honey you can get kicked by a cow or stung by a bee. But when that happens, you can laugh with the Lord by your side and say with him, "Been there. Done that!"
Embrace grace.'
Also, I got Ashley's neurology follow-up appointment scheduled this afternoon. It worked out to do it the same day as her next oncology follow-up, and they are both in the same building at Emanuel's Children's Hospital so we will see her oncologist at 9:30 AM, and then take a short elevator ride up two floors to see her neurologist at 11:30 AM... and just one drive for the two appointments so that definitely works for me!!
Oh, please also continue to keep Scott's mom, whom is Ashley's Grandma Carol, in your prayers, too, as her CH125 count is going back up,.. went from 11 to 23 in just a couple months, and she says they will likely be talking starting chemotherapy for her ovarian cancer again next month. Let's lift her up high!
LAUGHING WITH THE LORD by Barbara Johnson
'Are you going through a difficult struggle? Sit down and hold God's gift in your lap. Slowly untie the ribbons. Now remove the lid on the box. Reach beneath the tissue paper. It's party time! In the middle of your trial, God has prepared a celebration. Jesus triumphed over the worst, and now he will help you to do the same.
'How will he do it? In a way you didn't expect. Jesus knows about everything you're going through, and he has made arrangements for you to look back on it---and laugh. He is going to bring you laughter and liberty into your circumstances. Wherever Jesus is, there's a party going on.
'No, life won't ever be perfect. Even in the land of milk and honey you can get kicked by a cow or stung by a bee. But when that happens, you can laugh with the Lord by your side and say with him, "Been there. Done that!"
Embrace grace.'
Also, I got Ashley's neurology follow-up appointment scheduled this afternoon. It worked out to do it the same day as her next oncology follow-up, and they are both in the same building at Emanuel's Children's Hospital so we will see her oncologist at 9:30 AM, and then take a short elevator ride up two floors to see her neurologist at 11:30 AM... and just one drive for the two appointments so that definitely works for me!!
Oh, please also continue to keep Scott's mom, whom is Ashley's Grandma Carol, in your prayers, too, as her CH125 count is going back up,.. went from 11 to 23 in just a couple months, and she says they will likely be talking starting chemotherapy for her ovarian cancer again next month. Let's lift her up high!
Thursday, June 17, 2004
Another long day...
Well, another long day, but well spent. We got the results back on all of Ashley's tests. Monday's MRI, on her brain, shows no new changes. He said that the right eye's tumor is close to the chiasm, but that it was before (this I didn't know,.. I thought it wasn't even close before, but I might have misunderstood as there is always a lot of information to digest). The chiasm is the part where the right & left optic nerves cross. Anyway, both the left & right tumors apparently still look about the same, which is good. No sudden rapid growth, or invasion. The MRA did show something, but they are unsure whether it is really something or not. Our oncologist is skeptical about that, and feels that there is a good chance that this could be what is causing Ashley's eye pain. The MRA, which with the use of injected dye, scans the blood vessels & arteries for signs of collective blood,.. it's sort of bulgy in a section on the right side, near the tumor, and so that swelling could mean that the tumor is somehow pinching, or causing spasms. He is going to go over it thoroughly with the radiology team, and they will decide whether they feel they should repeat another MRA at the next MRI appointment. For now, we will continue using the Depicote (the anti-seizure medication), and see if it will help with her symptoms. If it does, then we would continue with that, however it there isn't a significant enough remedy, and it is confirmed that without a doubt there is a genuine effect from the tumors that is causing the pain, then we would procede with chemotherapy. It is still going to be used as a last result, and only if it is confidently felt that it would be beneficial to do so, of course. That decision has been confirmed by his collegues that he consulted with at the conference in Boston earlier this week. They too, had nothing to offer for opinion, or suggestion, on what this is, other than migrain... Ashley's case seems pretty rare. He even consulted with the doctor who actually has the largest amount of patients in the country, that have optic nerve gliomas, and even he has not seen this in relation to the NF tumors before, and was puzzled. They are suspicious of migrain relations, but our oncologist is still leaning also towards this finding on her MRA now. She has also started to show sensitivity to light at times, and especially in the right eye, which is suspectful of migrains also,.. but again that could all be from a constriction from that tumor, too. The lab work for the Liver Function Test came back with excellent results, and so it does not need to be repeated for awhile. He feels that we can wait to do it at the next MRI again, which is nice because then she doesn't even know they are doing it. Speaking of the next MRI,.. the next one will be in another 10 weeks, at the beginning of September. He was going to go ahead and start doing them every 2 months instead of the 3 month intervals, but then decided to meet in the middle and go every 2 1/2 months. That would leave the following one after that for around the middle of November then, too, which will make 7 MRIs for the year. She shouldn't need to have another spinal until at least next January, but the brain scans will be quite frequent as I already mentioned. Her spinal MRI was clear with no tumors, thank goodness. Ashley is to see the opthalmologist again on Monday, July 19th, a month from now, and then she will see the oncologist again the following Monday, July 26th. I am also supposed to schedule an appointment with her neurologist for her 6-month check-in with him, for next month (July) also. The oncologist also wants me to document any of the especially severe episodes,.. particularly ones that wake her in the night. The rest he said we don't need to bother trying to keep up with,.. we already know that we can't really pinpoint anything surrounding those since I journaled on them for awhile already.
Anyway, that's where we're at on that. On the way out, we took a couple of minutes to walk through the Children's Garden again,.. the girls all really enjoy that. I do, too. Next, we headed across the river to see friends... one of my very dearest friends & her family. The girls had a wonderful time getting to play with the other kids & their puppies, and I got to sort of unload some of my 'stuff' with my friend & her husband,.. let me tell you, they are both such tremendous friends that I just don't know what I'd do without them. They have been so supportive & I know she is always right there for me. Andrea, you're like a sister to me, and one of my very best friends... you're such an amazing friend!!
The girls & I stopped off for dinner @ Denny's on the way home, and that was fun. They pretty well slept through rush-hour traffic most of the way... wasn't too-too bad, about a little over an hour and a half. We got home just after 7:00 PM, this evening. Pretty tired though, and so we're off to bed.
Brittney has a follow-up with her orthopedic surgeon next week for her arm. They'll x-ray again, too. She's doing pretty well... getting tired of the sling though, and frustrated more than anything. She very rarely complains of pain,.. mostly just about all the things she still can't do right now, but all in all she's been being a real trooper. Probably handling it a lot better than I would, LOL.
Thanks again to everyone for all of the prayers and the support. We are grateful for each & every one of you!!
Anyway, that's where we're at on that. On the way out, we took a couple of minutes to walk through the Children's Garden again,.. the girls all really enjoy that. I do, too. Next, we headed across the river to see friends... one of my very dearest friends & her family. The girls had a wonderful time getting to play with the other kids & their puppies, and I got to sort of unload some of my 'stuff' with my friend & her husband,.. let me tell you, they are both such tremendous friends that I just don't know what I'd do without them. They have been so supportive & I know she is always right there for me. Andrea, you're like a sister to me, and one of my very best friends... you're such an amazing friend!!
The girls & I stopped off for dinner @ Denny's on the way home, and that was fun. They pretty well slept through rush-hour traffic most of the way... wasn't too-too bad, about a little over an hour and a half. We got home just after 7:00 PM, this evening. Pretty tired though, and so we're off to bed.
Brittney has a follow-up with her orthopedic surgeon next week for her arm. They'll x-ray again, too. She's doing pretty well... getting tired of the sling though, and frustrated more than anything. She very rarely complains of pain,.. mostly just about all the things she still can't do right now, but all in all she's been being a real trooper. Probably handling it a lot better than I would, LOL.
Thanks again to everyone for all of the prayers and the support. We are grateful for each & every one of you!!
Tuesday, June 15, 2004
A long, LONG day...
Well, we got through today... a very long, long day. I am so tired I can hardly see straight. Daddy had to work today so Grandma came down to babysit the other two girls while Ashley & I went back for today's MRI. Unfortunately, Grandma didn't hear me this morning when I said that Ashley couldn't have anything to eat or drink, and at 8:30 AM she let Ashley have a package of fruit snackies while I was finishing getting us ready to load up... Oops! Honest mistake, and I was hoping it wouldn't end up being too big of a deal, but it was.
When we got to the hospital at 10:00 AM, I told them about it, and the anesthesiologist said we couldn't do it. We need the results back in time for our appointment with our oncologist on Thursday, and so they strongly reccommended that we stay & wait. We had to wait at least three hours, and they happened to have a time slot open in 4 hours. That was so hard,.. Ashley had already started getting hungry at that point, let alone having to wait another 4 hours just to do the scan, and then would be another 2 hours beyond that before she could eat anything.
She ended up not getting to eat anything until about 5:00 PM. I did my best to keep her occupied & distracted, but how much can you really do in a hospital for hours & hours,... so, we watched some cartoons, and then we went for a walk. We walked through the Children's Garden outside for awhile, and that was nice,.. then, we went to the gift shop and Ashley picked out a pretty butterfly mylar balloon, and we tied it to her stroller. Next, we walked around the hospital, up & down all the hallways, but about that time it was lunchtime, and so the whole hospital smelled like food, and that wasn't helping, so we went back downstairs and sat in the waiting room again. After that, we played Go-Fish for a little while, and read a story, and played with some toys... the clock ticked by so slowly. Finally about the point where she couldn't stand it anymore, it was 2:15 and they came and got her for the MRI, She was done about 3:15,.. she woke a lot more roughly than she did yesterday & was pretty upset, but I was able to console her, and by 3:30ish we were on the road. Thankfully, traffic wasn't too bad, and we still made it home in a little over an hour,.. just before 4:45.
A long, long day, and we are so pooped, but otherwise, the scan went well. Grandma, don't feel bad,... accidents happen, and we love you!! (((hugs))) K, folks,.. that's all I can muster for an update today. I'm sheer exhausted. Ashley is doing well, and seems fairly perky now that we're home, and she can play & have some fun in her own environment... I'm going to do as a little as possible until I can snooze. I am so ready for bed and to catch some Zzzzzzzzzzzzzz!!!!! We see the oncologist again on Thursday, and should know all the results from all of the tests between yesterday & today by then.
When we got to the hospital at 10:00 AM, I told them about it, and the anesthesiologist said we couldn't do it. We need the results back in time for our appointment with our oncologist on Thursday, and so they strongly reccommended that we stay & wait. We had to wait at least three hours, and they happened to have a time slot open in 4 hours. That was so hard,.. Ashley had already started getting hungry at that point, let alone having to wait another 4 hours just to do the scan, and then would be another 2 hours beyond that before she could eat anything.
She ended up not getting to eat anything until about 5:00 PM. I did my best to keep her occupied & distracted, but how much can you really do in a hospital for hours & hours,... so, we watched some cartoons, and then we went for a walk. We walked through the Children's Garden outside for awhile, and that was nice,.. then, we went to the gift shop and Ashley picked out a pretty butterfly mylar balloon, and we tied it to her stroller. Next, we walked around the hospital, up & down all the hallways, but about that time it was lunchtime, and so the whole hospital smelled like food, and that wasn't helping, so we went back downstairs and sat in the waiting room again. After that, we played Go-Fish for a little while, and read a story, and played with some toys... the clock ticked by so slowly. Finally about the point where she couldn't stand it anymore, it was 2:15 and they came and got her for the MRI, She was done about 3:15,.. she woke a lot more roughly than she did yesterday & was pretty upset, but I was able to console her, and by 3:30ish we were on the road. Thankfully, traffic wasn't too bad, and we still made it home in a little over an hour,.. just before 4:45.
A long, long day, and we are so pooped, but otherwise, the scan went well. Grandma, don't feel bad,... accidents happen, and we love you!! (((hugs))) K, folks,.. that's all I can muster for an update today. I'm sheer exhausted. Ashley is doing well, and seems fairly perky now that we're home, and she can play & have some fun in her own environment... I'm going to do as a little as possible until I can snooze. I am so ready for bed and to catch some Zzzzzzzzzzzzzz!!!!! We see the oncologist again on Thursday, and should know all the results from all of the tests between yesterday & today by then.
Monday, June 14, 2004
They're adding up fast...
Ashley's MRI went well this morning. They didn't have any problems. They did the scan on her brain today, and the MRA,.. also her labwork. Her spine will be done when we go back tomorrow morning. Very tiring day, but went well, and that's what is important... ready for a good nap now though. She's a little fussy from the anesthesia, but overall, she's good. Need to rest up before we have to go back again tomorrow. We left here about 7:45 AM, and got home about 1:00 PM. They said the results should be ready in 48 hours. We see the oncologist again on Thursday, and so the results for all of everything should be ready by then. Needless to say, I'm anxious for the results. We wore our new awareness pins today,.. Ashley made sure people noticed her's. She seems pretty impressed with it, and made certain I put her's on her new ladybug hat last night before she went to bed. I added some pictures, of her showing it off, on her website... pretty cute. Well I will post more again tomorrow after she has the next one. I can't believe it will be her 5th MRI,.. 4 of them just this year alone already. January, April, and now the ones today & tomorrow. They're adding up fast...
Saturday, June 12, 2004
ErRoR
I just wanted to update on Ashley's MRIs & MRA,.. There was an error in the scheduling information. She is scheduled to check in on Monday @ 9:15 for a 10:00 A.M. MRI, MRA, & labs, and then she is scheduled again to check in on Tuesday @ 10:15 for another MRI @ 11:00 A.M. I'm not sure whether the increased dosage of the anti-seizure medication is helping her some or not, or if this is another one of those periods where she has a couple of goods days, but the last couple days haven't been too bad as far as pain episodes, and they have been by far less frequent, but some days can be that way. She has been a lot more 'wired', and hyperactive though. I've been up with her the last 4 nights, and so I haven't gotten much sleep, nor slept well when I have slept. One of those nights she awoke from an episode which doesn't happen often at night. The other nights, she was just plain 'awake' when she normally shouldn't be. One night it was all I could do to keep up with her,... asking me '20 questions' a mile a minute, LOL. I am plum exhausted from stress & lack of quality rest,... I always do around these MRIs, but overall we're doing okay.
Tuesday, June 08, 2004
Bruised Spirit...
Sorry to take a few days before posting since Ashley's last appointment. Things have been pretty busy. So anyway, Ashley saw the oncologist again on Friday. On the way there she had a really bad epsiode. The pain was so intense she got sick to her stomach, and she started having that pain in the back of her neck along with the eye pain. This is conscerning the doctor because the neck pain seems to be building similarly to how the eye pain started, increasing in frequency & intensity. Also that the pain level nauxiated her. During the test to check her peripheral vision, she didn't seem to be able to see in the outer regions that she could 3 weeks ago so this is of conscern as well. It was on the left side where that tumor is larger than the right side. Her MRIs have currently been every 3 months, however the doctor does not feel we should wait until next month, and has scheduled her for MRIs next week. He wants an extensive MRI on her brain on Monday, and another on her full spine the following day, on Tuesday. One of the MRIs will also include an MRA which will scan her blood vessels as well. They have to inject a dye, and it will help show if there are any constrictions that the MRI alone doesn't show. These scans will be more time consuming and he does not want her under the general anesthesia for that length of time all at once so that's why he made the decision to do two separate days back to back. Monday, we have to be there by 7:15 AM, and Tuesday, we have to be there by 8:15 AM. It's an hour drive from here each way so will be early rising those days. He is consulting with the opthalmologist again, and we will likely be going back there again in th next couple of weeks. We see the oncologist again next Thursday, after the tests have all been done. He didn't go ahead and do the draw for the Liver Function Test yet. He decided that it could easily be done when they run her IV during one of her MRIs next week, either Monday or Tuesday, and that way she doesn't even have to know they did it because she'll already be under the anesthesia. He's always thinking of her comfort, and I really like that. Next week he will be in Boston at an oncology convention, and plans to consult as many of his collegues from around the country as possible, to see if anyone else comes up with any other thoughts on Ashley's particular case. He upped her dosage on the anti-seizure medication from a 1/2 tsp. 3 Xs a day to 1 tsp. 3 Xs a day, since we weren't seeing any changes. He said we'll try this dosage for at least 4-6 weeks to see if there are any changes. He says he still plans to leave chemotherapy as a last option, but that we may still end up considering her again for the treatment. He did stress that it would be a year long treatment if we come to that, but hopefully that will still be awhile yet. Rush-hour was horrible, especially being a Friday. What is normally an hour drive, took 2 1/2 hours to get home. It was 91 degrees that day,.. thank goodness for A/C! It was stop & go, bumper to bumper, barely moving a few feet at a time for the first 2 hours, just to go the distance that normally takes a half hour,.. insane. We were so glad to finally get home!
Brittney is doing well. I kept her well medicated for the first few days, and then after that she was able to stop all pain meds completely, and hasn't complained of pain much since... only minor soreness a couple times. We saw the orthopedic surgeon yesterday. He confirmed that the break is too high to cast. She has to keep using the sling for 3 more weeks, but we don't have to wrap her with the ace bandage anymore so she's happy about that. They x-rayed again, and we go back for another follow-up in 3 weeks. He said they'll x-ray again, and we should be seeing new bone growth by then. The hardest thing for Brittney is that he said she can't do anything that will endanger her to a possible fall, or injury to her arm for 3 months, and that especially includes riding her quad. Well, for any of you who know Brittney well enough, you know that she's pretty mad about that. That means no riding for her, over our next 2 main camping trips this year,.. 4th of July & Labor Day. Physically she's doing okay, but her spirit is a little bruised at times.
Brittney is doing well. I kept her well medicated for the first few days, and then after that she was able to stop all pain meds completely, and hasn't complained of pain much since... only minor soreness a couple times. We saw the orthopedic surgeon yesterday. He confirmed that the break is too high to cast. She has to keep using the sling for 3 more weeks, but we don't have to wrap her with the ace bandage anymore so she's happy about that. They x-rayed again, and we go back for another follow-up in 3 weeks. He said they'll x-ray again, and we should be seeing new bone growth by then. The hardest thing for Brittney is that he said she can't do anything that will endanger her to a possible fall, or injury to her arm for 3 months, and that especially includes riding her quad. Well, for any of you who know Brittney well enough, you know that she's pretty mad about that. That means no riding for her, over our next 2 main camping trips this year,.. 4th of July & Labor Day. Physically she's doing okay, but her spirit is a little bruised at times.
Tuesday, June 01, 2004
A Broken Arm...
Okay, so Ashley is doing well. There really aren't any changes with the new medication yet. She still needs the Tylenol for eye pain episodes. Her follow-up is this Friday at 2:00 pm. I've noticed she has started complaining about neck pain a little more often lately so something to bring up on Friday when we see the oncologist again. The eye pain is still primarily in the right eye, but she has complained about the left more frequently, too. Her next MRI is planned for mid-July, unless they decide there is need to do it sooner than the 3-month intervals we've currently been doing. Her need for the Tylenol has still averaged the 4-6 hour intervals,.. no real changes in anything as of yet.
Courtney had her appointment with the dermatologist last week, and he says it is a minor skin thing, and definitely NOT Scleroderma, or anything else serious so that is a big relief. He gave us medication for it though, and she has a follow-up appointment next week.
We hope that you all had a nice Memorial Weekend. Our's was wet & soggy, but we had a lot of fun, and it was great to breathe in all that fresh mountain air. We look so forward to those camping trips. We just took our tent this time, and when we got up there, we realized we were short a pole so we found a tree limb and broke out the duct tape and did it 'redneck style'.
Brittney rolled her quad on the hillside, and broke her arm Saturday. She's doing well though. The doctor in the ER said that the break is too high so casting it wouldn't do any good. They splint it with a sling and used a wide ace bandage to immobilize it to her body, and two types of pain meds. And, of course, it was her right arm & she is right handed... isn't that just the way? We were able to continue camping, and still ended up having a nice weekend. Brittney is getting along pretty well with one arm, but she does get frustrated easily about all the things that she can't do now. I'm waiting to hear back from our doctor on which orthopedic surgeon she wants her to see, and then we'll get an appointment set up for this week. *sigh* Does it ever end?
Courtney had her appointment with the dermatologist last week, and he says it is a minor skin thing, and definitely NOT Scleroderma, or anything else serious so that is a big relief. He gave us medication for it though, and she has a follow-up appointment next week.
We hope that you all had a nice Memorial Weekend. Our's was wet & soggy, but we had a lot of fun, and it was great to breathe in all that fresh mountain air. We look so forward to those camping trips. We just took our tent this time, and when we got up there, we realized we were short a pole so we found a tree limb and broke out the duct tape and did it 'redneck style'.
Brittney rolled her quad on the hillside, and broke her arm Saturday. She's doing well though. The doctor in the ER said that the break is too high so casting it wouldn't do any good. They splint it with a sling and used a wide ace bandage to immobilize it to her body, and two types of pain meds. And, of course, it was her right arm & she is right handed... isn't that just the way? We were able to continue camping, and still ended up having a nice weekend. Brittney is getting along pretty well with one arm, but she does get frustrated easily about all the things that she can't do now. I'm waiting to hear back from our doctor on which orthopedic surgeon she wants her to see, and then we'll get an appointment set up for this week. *sigh* Does it ever end?
Tuesday, May 25, 2004
Guess that's that
Well, Ashley started her new medication a couple of days ago. The Liver Function Test came back with good results. This medication is an anticonvulsant which is used to control seizures, but it can also be used to treat other conditions, including severe migraine symptoms, and so the oncologist thought it might be worth trying to see if we have any better results than with the tylenol. This medication poses risk to the liver, which is why she has to have the labwork done periodically to monitor. It also comes with some other risk to possible adverse side effects, but it does say that they could go away during the treatment. The primary side effects with this particular type are nausea & indigestion so they said it might help if I give it to her with food. The other two main side effects are drowsiness and hair loss. The hair loss shouldn't be substantial like the chemotherapy would be though. She's still needing to continue taking her tylenol at the regular intervals, for now, but if this new medication is helpful then we should see the pain ease up in intensity & frequency soon, although he didn't really say how long he thought it might take to really show an effect so I need to ask. Ashley's next follow-up appointment is in a week and a half, on June 4th.
Courtney has her appointment with the specialist tomorrow morning. The conscern is still Scleroderma so prayers are appreciated for that, too, please.
Oh, I got my results back on the audiogram and my mammogram. Hearing turned out fine so not sure what they are planning to do next to determine what the problem is. My mammogram was clear/no cancer, which I didn't really think there would be. I'm sure the ultrasound will come back showing something more like fibrostic cysts. They put me back on estrogen so that should help. For those who don't know,.. I had to have a total hysterectomy 2 years ago,.. hence, the estrogen. Guess that's that.
Courtney has her appointment with the specialist tomorrow morning. The conscern is still Scleroderma so prayers are appreciated for that, too, please.
Oh, I got my results back on the audiogram and my mammogram. Hearing turned out fine so not sure what they are planning to do next to determine what the problem is. My mammogram was clear/no cancer, which I didn't really think there would be. I'm sure the ultrasound will come back showing something more like fibrostic cysts. They put me back on estrogen so that should help. For those who don't know,.. I had to have a total hysterectomy 2 years ago,.. hence, the estrogen. Guess that's that.
Tuesday, May 18, 2004
*ugh* Incompetency!
Ashley had her blood drawn yesterday for her Liver Function Test (LFT). To put it mildy, it was AWFUL. For starters, I will admit that children's veins are much smaller and can be difficult to find,... this is a fact. However, these nurses did not appear to have any experience drawing vlood on children whatsoever. They stuck my child 4-x's in the right arm, before deciding to try the left, I was getting upset, and I was just opening my mouth to demand that they stop,... but she got it,.. 2nd try, left arm. I was livid. I didn't even realize how many times they had actually stuck Ashley until after we got back home because I had been trying to calm her, and I can't watch that stuff anyway... I get too woozy & would pass out. After seeing her poor little arms, I wanted to just bawl. Ashley had been screaming & crying so much that the entire building heard her.... it was an awful experience, and needless to say, I will not take her back there for labs,.. EVER.
I'd rather drive all the way to Portland where the nurses in the Children's Oncology Ward (our doctor's office) have daily experience in this sort of thing. Yesterday stunk,.. I am just kicking myself for taking her there, but I just didn't take those things into consideration. Lesson learned,.. the hard way. If anyone else out there is ever in this type of situation, please learn from our ordeal, and find someone who has experience before you let them touch your child. Don't just assume, and don't be afraid to ask them. I thought these people could handle it,... I should have asked.
I wish I had something more positive to say, but I just don't. We got through it, it's over,... just have to keep moving forward. Ashley's eye pain is still consistant with no improvements. We should have the results of her lab in the next day or two, and then they plan to start her on the anti-seizure medication.
PS- For those of you who know,.. I had my audiogram, mammogram & ultrasound this morning. I should have the results by next week.
I'd rather drive all the way to Portland where the nurses in the Children's Oncology Ward (our doctor's office) have daily experience in this sort of thing. Yesterday stunk,.. I am just kicking myself for taking her there, but I just didn't take those things into consideration. Lesson learned,.. the hard way. If anyone else out there is ever in this type of situation, please learn from our ordeal, and find someone who has experience before you let them touch your child. Don't just assume, and don't be afraid to ask them. I thought these people could handle it,... I should have asked.
I wish I had something more positive to say, but I just don't. We got through it, it's over,... just have to keep moving forward. Ashley's eye pain is still consistant with no improvements. We should have the results of her lab in the next day or two, and then they plan to start her on the anti-seizure medication.
PS- For those of you who know,.. I had my audiogram, mammogram & ultrasound this morning. I should have the results by next week.
Wednesday, May 12, 2004
Mommy's Journal...
Well, I'm new to this whole 'journaling online' thing so I guess I'll just start off with trying to bring everybody up to speed on our current events, which is with one of our three daughters,.. for those who are unfamiliar with our journey up to this point. Ashley, our youngest daughter (4 1/2 y/o) has Neurofibromatosis Type 1 (NF1), which is a peripheral nerve disorder where you grow tumors, usually benign, on peripheral nerves throughout the body, but most commonly in the brain, and she is fairly new at having difficulties due to her NF. I knew something was up since her birth because she has so many cafe'au lait spots, but it took me 2 1/2 years just to get her diagnosed. We changed doctors and found a Neurologist who would begin following her condition. Ashley had her first MRI shortly after. Everything looked alright. It wasn't until November of this last year ('03) that she suddenly started complaining of an onset of pain in her eye. With most children, one might ordinarily not think much, and perhaps question if they had poked it, or bonked it, but when you have a child with NF it's different. She complained once, then 2-3 days later complained again a second time, and I called the doctor. My immediate thought was, "Dear Lord, please not tumors!". Ashley had her 2nd MRI in January ('04), and the results showed that she indeed had tumors on both of the optic nerves. These are called, bilateral optic nerve gliomas. They were relatively small, but the left has been larger & longer than the right. The conscern has been the pain because over the last few months the pain has significantly increased going from once or twice a week to once or twice a day to needing recurring medication 3-4 x's per day, and quite often not even subduing it. Ashley has been seeing an opthalmologist and an oncologist for these tumors, and her neurologist also follows, and they've decided to use recurring MRIs and follow-ups with each of them every 3 months to monitor them. The exact cause of the pain is still a real question that, so far, cannot be answered. The oncologist does feel very strongly that it is in relation to the tumors though. A couple of weeks ago, chemotherapy was being considered based on symptoms alone even though her films show no significant growth (a 3rd MRI in April), and her eye sight is currently intact, but because the pain is so severe & recurring and localized. After a meeting with the radiology board, it was decided that chemotherapy should be withheld for now so other measures can be considered. This week Ashley is supposed to go to the lab for a Liver Function Test because it has been decided to try her on a medication that is typically used as an anti-seizure medication, but has also been used to treat severe migraine symptoms. It has risks to the liver so they will be carefully monitoring. Ashley will need a follow-up in 3 weeks. I recently established and built an awareness website for Ashley regarding her NF which is located at http://4ashley.com
I think that brings us up to date,... it has been a very stressful 6 months.
I think that brings us up to date,... it has been a very stressful 6 months.
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