Well, I've been hinting at it for a while now and now we are going to pull the trigger. Here's the deal, give blood, get a limited edition, hand drawn, refirgerator worthy, signed... well kinda signed picture from Abby and Anna.
Now you may be thinking, "will I really get a limited edition, hand drawn, ya da ya da ya... Picture from Abby?" Well, the answer would be a big stinkin' YUP! one of a kind I may add.
Now you also might ask, "How could I get one of these limited edition...ya da ya da.. pics from Abby?" Well, once again I'm glad you asked and I also may add that I'm glad that you are so concise.... Well, here's how it works. You go to your local blood bank, ( just check the yellow pages, call your hospital, doctor, or just Google it), and then give blood. Once you are done and you aren't feeling light headed anymore, come back to this site and post a comment on this blog entry. When we see your name, we'll look up your address, if we don't have your address please post it or an email. We will then get Abby to draw you something nice, personal, and using a lot of red colors to remind you of this event that you took part in!
We would like to have people give at least as much as Abby has used since this whole thing started. I'll have to calculate but I bet it's up in the teens- 20's. While you are at the blood bank you might want to have them see if you are a good canidate to give platlettes, Abby used a ton of those too! Maybe you could become a monthly donor! That would be really cool! We'd have lots of pictures coming your way in that case.
Here's an added bonus... no, not ginsu knifes... but close... if you really want to help people and get a color picture of Abby, signed I may add... go give blood like the rest of us, and then check into this http://www.marrow.org/HELP/join_the_registry.html . This is the national bone marrow registry. Pray that Abby never needs a bone marrow transplant, but lots of people do. Leukemia, Lymphomoa, and lots of other diseases can be cured by a bone marrow transplant. If you really are willing to give bone marrow to anyone that needs it, then get on this list. If you do, please comment on this blog and we will send you not only a drawing, but also a signed picture of Abby! Talk about a deal huh!
Well really, if you want to help, go give blood. Give it on Abby's behalf if you want and know that what you are giving is saving someones life just like someone elses donation helped save Abby. Remember the retinal hemorrage? Donate some platlettes... Remember how Abby was short of breath and couldn't walk very well? Donate packed red blood cells.
There you have it the Big, Blog, Blood drive. Drawings and pictures will be sent out as soon as someone jumps on this one.... PS... I already got my picture 2 weeks ago when I donated... Wait... I get them all the time... Anyway, the gauntlet has been thrown down.
Monday, April 17, 2006
Saturday, April 15, 2006
A Good Wed, Thurs & A Good Friday
Happy easter all!
This chemo week has been really good. Before it started I kept hearing the good weather forecast and considering how much I've used that analogy in the past I was hopeful that since it would be a sunny week, that maybe Abby would do good... My hopes and prayers paid off and aside for a few gusts of wind, outside and in, all has been relatively calm here.
We dyed some easter eggs this week and the girls have been eating them all up! Abby eats about 3 a day! I guess that is better than a bunny mac and cheese craving! As for the steroids and cravings... she really has done great. Lots of wanting to be held, and lots of resting but not a ton of requests for food constantly as has been the norm in the past.
See, we've bumped Abby up to a 3/4 dose of 6MP and 1/2 of the oral Methotrexate. We'll check her counts again in a week and see where they want to set the medicine back to. Abby's been trying to chew up her Decadron instead of swallowing it up... she says it taste "yucky". She used to swallow it on the first try, good for a 4 year old, but of late she's decided to chew it instead. We'll have to work on that.
Well, only 3 more Decadron pills to go! We will be done this round on Easter morning.
This chemo week has been really good. Before it started I kept hearing the good weather forecast and considering how much I've used that analogy in the past I was hopeful that since it would be a sunny week, that maybe Abby would do good... My hopes and prayers paid off and aside for a few gusts of wind, outside and in, all has been relatively calm here.
We dyed some easter eggs this week and the girls have been eating them all up! Abby eats about 3 a day! I guess that is better than a bunny mac and cheese craving! As for the steroids and cravings... she really has done great. Lots of wanting to be held, and lots of resting but not a ton of requests for food constantly as has been the norm in the past.
See, we've bumped Abby up to a 3/4 dose of 6MP and 1/2 of the oral Methotrexate. We'll check her counts again in a week and see where they want to set the medicine back to. Abby's been trying to chew up her Decadron instead of swallowing it up... she says it taste "yucky". She used to swallow it on the first try, good for a 4 year old, but of late she's decided to chew it instead. We'll have to work on that.
Well, only 3 more Decadron pills to go! We will be done this round on Easter morning.
Tuesday, April 11, 2006
Yet another Spinal Tap Tuesday
Hello all!
Abby just got done with her spinal tap and Tiffany and the girls are on there way back from Denver. Tiffany also had to take Abby down yesterday for an eye doc appointment. So where to start....
Well, Abby is doing much better, the counts have come back up and she started back on her meds (at 1/2 the dose) about 5 days ago. Her counts were still good today and they started her on her chemo pulse... (Decadron, Vincristine, spinal tap Methotrexate). They will be increasing her oral meds back up towards normal too. Tiffany said that she did really good with the tap this time and hopefully she won't be too grumpy for this coming week.
Yesterday Abby went down to the eye doc for another follow up to her corrective surgery. He said her vision is fine and her eye drift is pretty much gone. He was going to even have us take the glasses away and be done with them but we've noticed a bit of eye wander when she is tired or on more chemo so he said to stick with the glasses until she grows out of them. At that time she will be done! Yippie! Also, her glasses have a 1 year warranty so we took them in to have them looked at and they are going to replace them with a new pair since they aren't holding up the best. Nice to get a new free pair of glasses!
Anyway, that's it for now... I'll post some more stuff here soon.
Abby just got done with her spinal tap and Tiffany and the girls are on there way back from Denver. Tiffany also had to take Abby down yesterday for an eye doc appointment. So where to start....
Well, Abby is doing much better, the counts have come back up and she started back on her meds (at 1/2 the dose) about 5 days ago. Her counts were still good today and they started her on her chemo pulse... (Decadron, Vincristine, spinal tap Methotrexate). They will be increasing her oral meds back up towards normal too. Tiffany said that she did really good with the tap this time and hopefully she won't be too grumpy for this coming week.
Yesterday Abby went down to the eye doc for another follow up to her corrective surgery. He said her vision is fine and her eye drift is pretty much gone. He was going to even have us take the glasses away and be done with them but we've noticed a bit of eye wander when she is tired or on more chemo so he said to stick with the glasses until she grows out of them. At that time she will be done! Yippie! Also, her glasses have a 1 year warranty so we took them in to have them looked at and they are going to replace them with a new pair since they aren't holding up the best. Nice to get a new free pair of glasses!
Anyway, that's it for now... I'll post some more stuff here soon.
Saturday, April 01, 2006
Counts are coming up!
Hey all,
Just wanted to let you know that late yesterday we talked to the doctor and they said that Abby's counts, immunity counts, are coming back up. 320 yesterday, so she is still neutropinic, but much better. We'll get her checked out early next week and probably be able to start her back on chemo. She is scheduled for a spinal tap, Methotrexate, Vincristine, and the Decadron pulse on Tuesday but I think we may see if we can move it back a little bit since I have a big event at school on Friday night.
Thank you for all of your thoughts and especially your prayers for Abby!
Just wanted to let you know that late yesterday we talked to the doctor and they said that Abby's counts, immunity counts, are coming back up. 320 yesterday, so she is still neutropinic, but much better. We'll get her checked out early next week and probably be able to start her back on chemo. She is scheduled for a spinal tap, Methotrexate, Vincristine, and the Decadron pulse on Tuesday but I think we may see if we can move it back a little bit since I have a big event at school on Friday night.
Thank you for all of your thoughts and especially your prayers for Abby!
Tuesday, March 28, 2006
38.... Just 38
Yesterday when Tiffany told me what Abby's ANC was she said, "38". I said, "Oh good, 3800... wow, great!" She said, "no, just 38".
So as you can see Abby still has a very low inventory in the immunity store.
So, you might ask, "what does that mean". Well thanks for asking! That means that she will be off chemo for another week and off of her weekend antibiotic. "Is there any thing else?", one might ask. And to that I would respond again with, "why yes, you are very insightful and yes there is something else." If Abby's counts don't come back up by the end of the week then we will have to take her down to get a bone marrow test again... Now that is a big if, and for that reason, I really do hope that her counts do come back up soon.
Now being that you are so insightful and questioning in nature, you may also be wondering what Dr. Smith has to say about all of this. Well, he says things like, "what's up with her counts?" That's just doctor Smith... Let me translate. "What's up with her counts?" means... (Her counts are really low and so we will keep her off chemo again for this next week. This is pretty normal during these treatments and it is a really juggling act to keep kids from being too low or too high. Her counts should come up in the next week and if they don't we'll do a bone marrow but that is unlikely as she is probably just fighting off some virus.)
So, counts again on Friday here in Fort Collins... If they are low then to Denver we go... Pray that they come on up.
Thanks again for checking up on Abby and our family... stay tuned for exciting news where you can do something and quite possibly get a limited edition and autographed picture from Abby and Anna!
So as you can see Abby still has a very low inventory in the immunity store.
So, you might ask, "what does that mean". Well thanks for asking! That means that she will be off chemo for another week and off of her weekend antibiotic. "Is there any thing else?", one might ask. And to that I would respond again with, "why yes, you are very insightful and yes there is something else." If Abby's counts don't come back up by the end of the week then we will have to take her down to get a bone marrow test again... Now that is a big if, and for that reason, I really do hope that her counts do come back up soon.
Now being that you are so insightful and questioning in nature, you may also be wondering what Dr. Smith has to say about all of this. Well, he says things like, "what's up with her counts?" That's just doctor Smith... Let me translate. "What's up with her counts?" means... (Her counts are really low and so we will keep her off chemo again for this next week. This is pretty normal during these treatments and it is a really juggling act to keep kids from being too low or too high. Her counts should come up in the next week and if they don't we'll do a bone marrow but that is unlikely as she is probably just fighting off some virus.)
So, counts again on Friday here in Fort Collins... If they are low then to Denver we go... Pray that they come on up.
Thanks again for checking up on Abby and our family... stay tuned for exciting news where you can do something and quite possibly get a limited edition and autographed picture from Abby and Anna!
Monday, March 20, 2006
neutropenic is not the best
So, though Abby has been doing really good, she is still neutropenic (very low immunity). They like to keep her between 1000-1500 in her ANC (immunity blood count) and if she drops below 500 she is deemed neutropenic. When people are neutropenic they have a high risk of infection with very little symptoms, obviously not so good. Last year, Abby was neutropenic quite often but this year she has been really good until now. 2 weeks ago, she was about 300 and so they wanted to see us in 2 weeks, i.e. today... Today they ran the blood count and she was at 100! Yikes!
So... the protocol that she's on says to take kids off their meds for a week if they are neutropenic like Abby so guess what? Yup, no chemo meds for a week! That means I don't have to wake up Abby before I go to bed and give her the chocolate coated chemo! Kind of a nice break, I don't know what to do with myself:)
Her blood counts should go back up by taking her off the meds and with it her immunity too. If the counts don't come up within a week then they will have to take her off for another week to let them recover. Dr. Smith said that they usually come back up in a week.
See, we also had a hearing test for Abby today at the hospital. Dr. Smith wanted to get a baseline since her speech isn't the clearest, just to make sure it wasn't being caused by any hearing problems. The test came back great, her hearing is perfect! Now she has no excuse not to listen to me because I know that she can hear me!
Well, that's it for now. Pray that she doesn't get the cold that Tiffany has or that Anna has. Pray that she doesn't get a neutropenic fever, over 101.5, because if she does we have to take her in to the hospital to be admitted.
Oh ya... stay tuned for information on the upcoming Abbyupdate blood drive... Oh ya... it's gonna be big!
So... the protocol that she's on says to take kids off their meds for a week if they are neutropenic like Abby so guess what? Yup, no chemo meds for a week! That means I don't have to wake up Abby before I go to bed and give her the chocolate coated chemo! Kind of a nice break, I don't know what to do with myself:)
Her blood counts should go back up by taking her off the meds and with it her immunity too. If the counts don't come up within a week then they will have to take her off for another week to let them recover. Dr. Smith said that they usually come back up in a week.
See, we also had a hearing test for Abby today at the hospital. Dr. Smith wanted to get a baseline since her speech isn't the clearest, just to make sure it wasn't being caused by any hearing problems. The test came back great, her hearing is perfect! Now she has no excuse not to listen to me because I know that she can hear me!
Well, that's it for now. Pray that she doesn't get the cold that Tiffany has or that Anna has. Pray that she doesn't get a neutropenic fever, over 101.5, because if she does we have to take her in to the hospital to be admitted.
Oh ya... stay tuned for information on the upcoming Abbyupdate blood drive... Oh ya... it's gonna be big!
Wednesday, March 15, 2006
Abby's doing really good
Wanted to tell you all that Abby did really well with her last treatment. She had a bit of the shakes coming off the Decadron and she has been pretty wired too. That is all really normal effects of coming off the Decadron. All in all, her week was pretty good. She was a bit whinny as usual, but that's just par for the course.
It has been pretty nice outside and I'm on spring break this week so we've been getting outside a lot. That seems to help Abby too, she loves to be outside!
So, other than that, not much is going on. All her doctor appointments went fine and the stomach doctor didn't find anything way out of normal. Maybe a little lactose intolerant but just borderline. We will keep her on the Zantac for another month and then talk to him again about were to go next.
On a final note... I just did our tax stuff and got all of Abby's bills in order. I won't tell you how much we spent last year but suffice it to say....THANK YOU ALL that have helped in that arena! I seriously don't know what we would have done. Next year ought to be much less since she only goes down once a month instead of weekly, or in some cases 4 times a week! We even found one day when we went down twice in one day! Crazy!
Get this... we put 6,450 miles on the van going back and forth to Abby's appointments last year!
No driving today!!! I'm going to work on the yard with the girls!
It has been pretty nice outside and I'm on spring break this week so we've been getting outside a lot. That seems to help Abby too, she loves to be outside!
So, other than that, not much is going on. All her doctor appointments went fine and the stomach doctor didn't find anything way out of normal. Maybe a little lactose intolerant but just borderline. We will keep her on the Zantac for another month and then talk to him again about were to go next.
On a final note... I just did our tax stuff and got all of Abby's bills in order. I won't tell you how much we spent last year but suffice it to say....THANK YOU ALL that have helped in that arena! I seriously don't know what we would have done. Next year ought to be much less since she only goes down once a month instead of weekly, or in some cases 4 times a week! We even found one day when we went down twice in one day! Crazy!
Get this... we put 6,450 miles on the van going back and forth to Abby's appointments last year!
No driving today!!! I'm going to work on the yard with the girls!
Tuesday, March 07, 2006
Spinal Tap Tuesday again.
Hey all,
Long time no post... My friend said that I only post when things are hard. I told him that I only post when things are hard but not too hard. If they are too hard then I just want to sleep when I can! But that is fairly true. Abby has been doing very well. Stomach issues seem to have gone away for the most part. She hasn't had any more colds either!
All in all, pretty good. We went to a Team in Training event the other day at Red Robin and Abby had a blast. She is a patient honoree for the Fort Collins team this year so that was nice little get together.
Abby also just went to the Disney Princesses on Ice show on Sunday. She had a great time! The people at Disney came out before the show and gave Abby and Anna a stuffed Minnie Mouse doll. So during the show they just sat there with their stuffed Minnies and little princess wands... and tiaras watching the show. Anna was pretty much mesmerized during the whole 2 hour event and Abby asked a lot of questions about what was going on down on the ice. Pretty good time!
Now today, Abby is back to the chemo pulse. This morning she will start with a spinal tap/methotrexate push, some Vincristine, and some blood tests. She also has an appt. with Dr. Lee, the GI doc, about her tummy. And then tonight she will come back home and start the Decadron, the grumpy pill, which wasn't too bad last time compared with the time before.
Pray that she does well.
Long time no post... My friend said that I only post when things are hard. I told him that I only post when things are hard but not too hard. If they are too hard then I just want to sleep when I can! But that is fairly true. Abby has been doing very well. Stomach issues seem to have gone away for the most part. She hasn't had any more colds either!
All in all, pretty good. We went to a Team in Training event the other day at Red Robin and Abby had a blast. She is a patient honoree for the Fort Collins team this year so that was nice little get together.
Abby also just went to the Disney Princesses on Ice show on Sunday. She had a great time! The people at Disney came out before the show and gave Abby and Anna a stuffed Minnie Mouse doll. So during the show they just sat there with their stuffed Minnies and little princess wands... and tiaras watching the show. Anna was pretty much mesmerized during the whole 2 hour event and Abby asked a lot of questions about what was going on down on the ice. Pretty good time!
Now today, Abby is back to the chemo pulse. This morning she will start with a spinal tap/methotrexate push, some Vincristine, and some blood tests. She also has an appt. with Dr. Lee, the GI doc, about her tummy. And then tonight she will come back home and start the Decadron, the grumpy pill, which wasn't too bad last time compared with the time before.
Pray that she does well.
Monday, February 20, 2006
Things are going pretty good
Hey all,
Just wanted to let you all know that Abby is doing pretty good. We had to cancel our appt. with the GI doc on Friday because the weather was sooooo bad. I got to Loveland, about 10 miles away and after seeing multiple cars off the road and only going 40mph I decided to see if we could reschedule and go home.
Other than that, things have been relatively calm around here. Tiffany and I got colds again and I'm sure the girls will get them too or something else since there is so much going around this time of year.
Abby's stomach thing seems to be a bit better too. We increased the Zantac dose and she hasn't been wakeing up at night for that reason as much. She still seems to find a way to wake me up though since she is kind of in that routine. We'll have to work on it here before the next big chemo pulse.
Well that's all. Have a good Presidents Day!
Just wanted to let you all know that Abby is doing pretty good. We had to cancel our appt. with the GI doc on Friday because the weather was sooooo bad. I got to Loveland, about 10 miles away and after seeing multiple cars off the road and only going 40mph I decided to see if we could reschedule and go home.
Other than that, things have been relatively calm around here. Tiffany and I got colds again and I'm sure the girls will get them too or something else since there is so much going around this time of year.
Abby's stomach thing seems to be a bit better too. We increased the Zantac dose and she hasn't been wakeing up at night for that reason as much. She still seems to find a way to wake me up though since she is kind of in that routine. We'll have to work on it here before the next big chemo pulse.
Well that's all. Have a good Presidents Day!
Thursday, February 09, 2006
Thankful for so much
You know, on these weeks when Abby is some what of a grumpy, sad, and tired little girl on Decadron it would be easy to get bogged down with life. And to a point we do, especially after that first day when you get a bit side-swiped by her demeanor on Decadron. It is pretty hard to watch your child wake up one morning and be a completely different little girl. Constantly attached to her middle fingers and her blankie she walks around the house for most of the day wanting to be held. Oh well, that's just how it is.
Now, I was a bit down about all of this last night as was Tiffany but this morning.... well let me tell you.
I was driving in early to work, a bit sad about the life that my little girl gets to live for the next year plus and reflecting on the past when I turned East toward Greeley and saw the most beautiful sunrise! The whole sky was lit up with pinks and oranges, unique cloud shapes as far as I could see all lit up. I go so distracted at times that I started to forget that I was operating a motor vehicle. Not good. Anyway, a flood of thankfulness for the beauty in life came over me this morning and I just wanted to share it with you.
So Abby's not feeling good. So I have a bad day. So you have a bad day... or week... Still there's beauty in this world. Sometimes it is right there on the surface and everything is rose colored in life. Sometimes it is buried a little and only an amazing sunrise will bring it back out to the surface.
Today the sunrise brought, along with it's beauty, a deep sense of thankfulness. Abby's alive. I have great friends. I have a great family. I have all of you that read these often misspelled reflections and updates on our life with this beautiful little girl that is surviving a bout with cancer. I have the sight to see, and the ears to hear, all of the beautiful things of this world.
So, thank you for all the you have done in the life of our family. If it was as big as donating money for medical expenses or helping us with the move into our house, or even if you only experience with us is from reading this blog... I want to say "THANK YOU".
Thank you for the encouragement that you give us. Even if you don't post a comment on this blog, I know that hundreds of you visit this page each week to see how Abby is doing. To see how you can be praying for us. And just to post encouragements to our family.
So thank you; and I hope that this post can be a little bit of a sunrise in your life today too.
Now, I was a bit down about all of this last night as was Tiffany but this morning.... well let me tell you.
I was driving in early to work, a bit sad about the life that my little girl gets to live for the next year plus and reflecting on the past when I turned East toward Greeley and saw the most beautiful sunrise! The whole sky was lit up with pinks and oranges, unique cloud shapes as far as I could see all lit up. I go so distracted at times that I started to forget that I was operating a motor vehicle. Not good. Anyway, a flood of thankfulness for the beauty in life came over me this morning and I just wanted to share it with you.
So Abby's not feeling good. So I have a bad day. So you have a bad day... or week... Still there's beauty in this world. Sometimes it is right there on the surface and everything is rose colored in life. Sometimes it is buried a little and only an amazing sunrise will bring it back out to the surface.
Today the sunrise brought, along with it's beauty, a deep sense of thankfulness. Abby's alive. I have great friends. I have a great family. I have all of you that read these often misspelled reflections and updates on our life with this beautiful little girl that is surviving a bout with cancer. I have the sight to see, and the ears to hear, all of the beautiful things of this world.
So, thank you for all the you have done in the life of our family. If it was as big as donating money for medical expenses or helping us with the move into our house, or even if you only experience with us is from reading this blog... I want to say "THANK YOU".
Thank you for the encouragement that you give us. Even if you don't post a comment on this blog, I know that hundreds of you visit this page each week to see how Abby is doing. To see how you can be praying for us. And just to post encouragements to our family.
So thank you; and I hope that this post can be a little bit of a sunrise in your life today too.
Tuesday, February 07, 2006
Endoscopy went well
Abby had her Endoscopy this morning and things looked good. No ulcers, no big infections or anything else alarming. They did do some biopsys of each area to run some more test on so maybe that will show something.
Dr. Lee gave us the results of the lab test from last week and the ultra sound results. Basically everything looks normal there too. This could have all been caused by some sort of virus that just took a long time to get out of her system since she is immuno supressed or it could be something else all together.
In some ways it is nice that it is nothing major so far but also it is a little disconcerting to see your child so tired and uncomfortable so often. Hopefully this isn't what the rest of the chemo treatment will be like.
Tonight she starts Decodron (i.e. Grumpy/Hungry Pill) again tonight. Hopefully she does better than she did last month with it. I probably should take a nap while I have the chance... Pray that she does well.
Wednesday, February 01, 2006
Cat Scan... & 3 other appointments
So Abby had her birthday CAT Scan today at the hospital. The machine looked a lot bigger than this one and no, no cats were harmed in the making of this blog. Anyway, she did really good for the scan. So good that she was done in 5 minutes. The scan showed that everything was fine in her sinuses, that was what they were looking for. Sometimes kids that are immuno-compromised can get sinus infections that don't show up by the normal means but still make the kids feel really tired and worn out. But that was not the case so at least that is one thing that can be ruled out.
Our next stop on this tour was Dr. Lee, the tummy doctor as we like to call him. We talked about her symptoms and the history and all that and then about options. The best option is to do an Endoscopy of her tummy to see what is going on. This will happen next week on Tuesday and they will put her under again for it. Hopefully that will shed some more light on the why she hasn't been feeling so good.
Dr. Lee ordered some tests so while we waited for them to get scheduled, and since they are just across the hall, we went over to CHOA for Abby's exam. The decided to draw blood and do all of the labs so that we wouldn't have to go to another lab and she saw Dr. Smith to talk about our appointment with Dr. Lee. Abby did pretty good but she wanted to eat and when I told her no she had a bit of a melt down... But the reason I told her no was that since she hadn't eaten for 7 hours, since breakfast, there was a chance that we could get the abdominal ultra sound, ordered by Dr. Lee today... They fit us in so back down stairs we went and checked in at the ultra sound place.
Whew... Appt. #4. The ultra sound took about a half hour and Abby once again did great! What a little trooper huh! She stayed still for a while and then I realized that she thought this was like the CAT scan... I filled her in and told her she could move her head and watch the "movie" of her tummy and that kept her pretty occupied.
After that was done, we went back up to CHOA to pay our bill and get some food... after 2 cookies, a banana, 1 muffin, a glass of water and a couple snack for me, we were on our way.
Anyway, as you can see it was a busy day but a good one. Hopefully we will be a step closer to figuring out why Abby has been having such a difficult few weeks.
I'll continue to keep you posted as we learn more.
Our next stop on this tour was Dr. Lee, the tummy doctor as we like to call him. We talked about her symptoms and the history and all that and then about options. The best option is to do an Endoscopy of her tummy to see what is going on. This will happen next week on Tuesday and they will put her under again for it. Hopefully that will shed some more light on the why she hasn't been feeling so good.
Dr. Lee ordered some tests so while we waited for them to get scheduled, and since they are just across the hall, we went over to CHOA for Abby's exam. The decided to draw blood and do all of the labs so that we wouldn't have to go to another lab and she saw Dr. Smith to talk about our appointment with Dr. Lee. Abby did pretty good but she wanted to eat and when I told her no she had a bit of a melt down... But the reason I told her no was that since she hadn't eaten for 7 hours, since breakfast, there was a chance that we could get the abdominal ultra sound, ordered by Dr. Lee today... They fit us in so back down stairs we went and checked in at the ultra sound place.
Whew... Appt. #4. The ultra sound took about a half hour and Abby once again did great! What a little trooper huh! She stayed still for a while and then I realized that she thought this was like the CAT scan... I filled her in and told her she could move her head and watch the "movie" of her tummy and that kept her pretty occupied.
After that was done, we went back up to CHOA to pay our bill and get some food... after 2 cookies, a banana, 1 muffin, a glass of water and a couple snack for me, we were on our way.
Anyway, as you can see it was a busy day but a good one. Hopefully we will be a step closer to figuring out why Abby has been having such a difficult few weeks.
I'll continue to keep you posted as we learn more.
Tuesday, January 31, 2006
Abby's turning 4 and is getting some more tests.
So Abby is turning 4 today! Yippee! Crazy too. 1 year ago I was in the hospital for her day 28 bone marrow test. Also a year ago on her birthday, her cheeks looked like big fat balloons, cute but big! And last year she almost fell asleep on her birthday cake!But not this year! Nope, this year we had a terrific party! On Saturday she went out to tea with Tifffany and her mom and then we all went out to dinner that night. She even had a big bowl of ice cream after dinner. She did end up throwing that up later in the night but lets not talk about that right now. On Sunday, we had an early party for her with a butterfly cake that she helped make and decorate.
Overall it was a great little family party and she had a blast. She got a couple presents and some very nice cards and was happy as a clam for the night.
Now since Abby is so special, she is going to get a couple more presents this year for her birthday... one will be a CAT scan tomorrow, and the other will be a gastroscopic survey. Wohoooeee! I mean what other 4 year olds do you know that get to utilize such amazing technology so early in thier life! Pretty special indeed!
Anyway, Abby will be getting a scan tomorrow to check out her sinuses since she just doesn't seem like herself lately. Immunocompromised kids often can have a sinus infection but not show the symptoms since they have such a low immunity.
She will also meet with the gastro intestinal doctor to get things ready for a gastroscopic survey in the near future to check for ulcers and/or whatever else may be going on with her tummy. They will have to put her under for that procedure so we'll just be talking to the doctor tomorrow and setting up a time for the procedure.
So, what do you think? Pretty cool presents huh!? Actually, I think it will be very helpful to kind of get to the bottom of some of these things that have been making Abby feel so bad. Pray that they can get some answers so she can start to feel better.
Sunday, January 29, 2006
More on Abby
So just another quick post to let you know about Abby. Overall she is doing pretty good. No blood infection ever showed up, her immunity (ANC) is fine, and she's been playing a lot more. Some days she still feels a bit tired and grumpy/whiney, but hopefully that will be less in the near future.
She still is having a hard time at night, waking up a couple times a night sometimes crying, or wanting to be held. Last night she threw up and had some real pain in her stomach, probably from all of the acid and the possible ulcer. We are still working what to do about that but for now it seems to be doing alright most of the time.
Anyway, have a great day and thanks for continuing to come along in our journey.
She still is having a hard time at night, waking up a couple times a night sometimes crying, or wanting to be held. Last night she threw up and had some real pain in her stomach, probably from all of the acid and the possible ulcer. We are still working what to do about that but for now it seems to be doing alright most of the time.
Anyway, have a great day and thanks for continuing to come along in our journey.
Sunday, January 22, 2006
When will it stop?
So in the last week since my last post Abby has gotten a cold and Anna has gotten a stomach bug. We took Abby down to Denver for the cold since she had a fever. They did a blood culture and gave her Rocephin in case it was a blood infection. Then on Friday I left work early and took her to our local doctor for a rash that they wanted to check out and make sure it wasn't anything serious. All weekend we have been keeping the girls apart so that Abby wouldn't get the stomach bug from Anna.... but to no avail! Last night at 10 ish she threw up and was up off and on until about 2:30am. If that wasn't enough, Anna woke up this morning with Abby's cold, a tit for a tat I guess. Anyway, Abby spiked a fever of 102 today... that would ussually get her admitted to the hospital but the doctor on call said to wait it out for a day and give her Tylenol. So, currently her fever is at about 100, hopefully it goes down to normal by tommorrow or off to Denver we may be going again.
So that's about it really... pretty boring around here at the Schreiber house! :)
I'm going to go nap.
Pray that Tiffany and I don't get it.
Sunday, January 15, 2006
This one's been rough
So, I guess these monthly chemos are going to be a bit less predictable than I had thought! Going into this one, I thought things would be a bit more intense but not too bad... I was very wrong.
Man, Abby has been pretty miserable this week. The chemo just wiped her out and then the steroid drug, decadron, just made her extra grumpy and crazy hungry again. This last week reminds me of some of the long times that she was on steroids like last year and this summer. So, I guess these monthly rounds won't be all the same. Oh well.
Here's the current state of the Schreibers... Tired. That pretty much says it. Abby's demands for food coupled with her insatiable appetite, especially for salty foods and carbs, has been quite exhausting. I just hope she doesn't try to raid the pantry tonight or I'll have to put the baby gate back up! She's actually feeling a bit better other than the hunger issue. All she wants to do though is watch the Disney Chip and Dale DVD over and over and over and over and over... Whew! I really need to get those songs out of my head.
Anyway, this morning was her last Decadron pill so she should be coming around here in the next couple days. She'll have couple days of withdraw symptoms and then things should be back to "normal" whatever that is. Actually, the Schreiber house "normal" has been pretty good so far and I'm looking forward to it again.
Pressing on...
The Schriebers
Man, Abby has been pretty miserable this week. The chemo just wiped her out and then the steroid drug, decadron, just made her extra grumpy and crazy hungry again. This last week reminds me of some of the long times that she was on steroids like last year and this summer. So, I guess these monthly rounds won't be all the same. Oh well.
Here's the current state of the Schreibers... Tired. That pretty much says it. Abby's demands for food coupled with her insatiable appetite, especially for salty foods and carbs, has been quite exhausting. I just hope she doesn't try to raid the pantry tonight or I'll have to put the baby gate back up! She's actually feeling a bit better other than the hunger issue. All she wants to do though is watch the Disney Chip and Dale DVD over and over and over and over and over... Whew! I really need to get those songs out of my head.
Anyway, this morning was her last Decadron pill so she should be coming around here in the next couple days. She'll have couple days of withdraw symptoms and then things should be back to "normal" whatever that is. Actually, the Schreiber house "normal" has been pretty good so far and I'm looking forward to it again.
Pressing on...
The Schriebers
Tuesday, January 10, 2006
Spinal Tap Tuesday
Hey all,
Just letting you know that Abby is in Denver today for her spinal tap/chemo and to start the monthly steroid treatment... Oh how I love those decadron days! Hopefully Tiffany will come back with some good ideas for Abby's stomach problems too.
Anyway, retroactive prayer for the day and the week to come would be great.
Just letting you know that Abby is in Denver today for her spinal tap/chemo and to start the monthly steroid treatment... Oh how I love those decadron days! Hopefully Tiffany will come back with some good ideas for Abby's stomach problems too.
Anyway, retroactive prayer for the day and the week to come would be great.
Sunday, January 08, 2006
"not feeling good"
"I'm not feeling good." That's what Abby has been saying a lot in these last few weeks. It is so hard to hear that from a 3 year old, not just because I can't do anything about it most of the time, but also because she can't really tell me why. I ask her where things hurt, or how they feel but I usually get the same response... "my tummy."
Lately Abby has been waking up in the night a lot more. And last night she was awake crying about 3 times. We called CHOA last week and they said to put her back on Zantac, so we have. They also said it may take a while so I guess we'll just have to wait. Chemo medicines can be so rough of kids stomachs since the treatment is so long, because of that she might just have to stay on Zantac for the rest of the treatment.
I think it's probably an ulcer, or some other upper GI wall inflamation. What ever it is, pray that she will start to feel better soon and that her body will get healthier... she also has a yeast infection, so you can pray for that too. Thanks!
Lately Abby has been waking up in the night a lot more. And last night she was awake crying about 3 times. We called CHOA last week and they said to put her back on Zantac, so we have. They also said it may take a while so I guess we'll just have to wait. Chemo medicines can be so rough of kids stomachs since the treatment is so long, because of that she might just have to stay on Zantac for the rest of the treatment.
I think it's probably an ulcer, or some other upper GI wall inflamation. What ever it is, pray that she will start to feel better soon and that her body will get healthier... she also has a yeast infection, so you can pray for that too. Thanks!
Tuesday, January 03, 2006
Man, what a year!
Well what a year it has been huh? I've been relfectiving lately as I remember each day from the past year on how crazy this whole year has been. It's been a year?! I mean that alone is crazy enough. From that morning before we knew that Abby had cancer until just a few days ago... one whole year! Crazy. She's done soooo well and grown up so much!
The night of New Years Eve I said a special prayer of thanks as I put Abby to bed and tucked her in. A prayer and a kiss on her forehead that expressed a deeper love, joy, hope, and relief than I could ever express in words. Please pray with me this year for another year full of love, joy, and healing for my precious little girl.
The night of New Years Eve I said a special prayer of thanks as I put Abby to bed and tucked her in. A prayer and a kiss on her forehead that expressed a deeper love, joy, hope, and relief than I could ever express in words. Please pray with me this year for another year full of love, joy, and healing for my precious little girl.
Thursday, December 29, 2005
On this day a year ago...
It all started a year ago today. When I boarded the plane last year, on the evening of the 29th, with my little fever laden sweat ball of a daughter I didn't know much, I just knew she was sick. She had that rash, little pin prick sized bruises basically, all over her feet, around her eyes, and up her legs. She was burning up, even with the use of ibuprofen AND Tylenol rotated every 3-4 hours, without it she was up in the 103 degree range. The plane ride was not fun at all. Abby sat on my lap and cooked me from the top. The lady in front of us put her seat back all the way... ahh the joys of air travel. I just remember wanting to be home so bad... what was wrong with my little girl?...
All during the last half of the plane trip Abby's nose started to bleed and I couldn't get it to stop. Everytime it stopped she would cough again and up it would start. I think she seriously lost a lot of blood from that nose bleed, oh man, the memories... We finally got the nose bleed mostly stopped and then somewhere right before landing or right after she started to cough again... hard coughing... on taking my hand away from over her mouth I realized that the moisture on my hand was not just coughing goobers or saliva, but instead blood! At that point I think both Tiffany and I were pretty overwhelmed. She had a big coughing attack again right off the plane. Standing in concourse B, holding my daughter who was now not just sick with a wierd rash but also coughing up blood, we decided to call our doctor. Dr. Samuelson happened to be on-call that night and he helped to calm us and told us what to look for, and what to do if she started to breath rapidly. We had an appointment with him the next day at 10am so he told us to come in the next morning and he would check her out.
Well, to make the story of the long ride home short, we took 1-70 through Denver, the longer route, instead of going home via the country roads that have no hospitals. We put our bags in the living room, put our girls to bed, and fell into the bed ourself too. We were up a lot during the night since no one could sleep much with that cough of Abby's, nothing like the cough you get with the Flu huh! Tiffany and I weren't feeling too good either, we both were getting the Flu from taking care of our little sick Abby....
Well, I guess this story will have to told in daily section for a little bit.. more to come on the 30th and about the 30th last year.... actually, if you want a reminder, just read the first few entries of this blog.... they sure bring back the memories for me!
All during the last half of the plane trip Abby's nose started to bleed and I couldn't get it to stop. Everytime it stopped she would cough again and up it would start. I think she seriously lost a lot of blood from that nose bleed, oh man, the memories... We finally got the nose bleed mostly stopped and then somewhere right before landing or right after she started to cough again... hard coughing... on taking my hand away from over her mouth I realized that the moisture on my hand was not just coughing goobers or saliva, but instead blood! At that point I think both Tiffany and I were pretty overwhelmed. She had a big coughing attack again right off the plane. Standing in concourse B, holding my daughter who was now not just sick with a wierd rash but also coughing up blood, we decided to call our doctor. Dr. Samuelson happened to be on-call that night and he helped to calm us and told us what to look for, and what to do if she started to breath rapidly. We had an appointment with him the next day at 10am so he told us to come in the next morning and he would check her out.
Well, to make the story of the long ride home short, we took 1-70 through Denver, the longer route, instead of going home via the country roads that have no hospitals. We put our bags in the living room, put our girls to bed, and fell into the bed ourself too. We were up a lot during the night since no one could sleep much with that cough of Abby's, nothing like the cough you get with the Flu huh! Tiffany and I weren't feeling too good either, we both were getting the Flu from taking care of our little sick Abby....
Well, I guess this story will have to told in daily section for a little bit.. more to come on the 30th and about the 30th last year.... actually, if you want a reminder, just read the first few entries of this blog.... they sure bring back the memories for me!
Thursday, December 15, 2005
Didn't we just do this?
Well, Abby's just finished up this months Decadron/Chemo pulse week. We started early, last Thursday night. She wasn't suppose to start this chemo pulse until Tuesday of this week, but they wanted to see her early and Thursday worked great because the Make a Wish Store party was on Thursday too. The Wish Store was pretty fun. Basically Abby got to go off, by herself, into a room and "buy" gifts with her wish dollars. They also had face painting, family photos, hot chocolate, Santa and Mrs. Claus... (what's her first name anyway?), and lots of fun crafts. Abby had a blast going shopping and I did too. It was a good way to make the trip that involved a spinal tap more fun!
And now it is over. It wasn't too bad this time, demanding but not too bad. It is nice to know what the overall tone of these weeks will be like. Abby wants to be held a lot and is generally tired and a bit moody. Also hungry of course and like to rest a lot instead of playing. But that is pretty good really, I'm glad that she tolerates it so well.
Other than that, not much has gone on around here... that is probably a good thing. I like it when it isn't so exciting/crazy around here... ahhh relaxation!
Merry Christmas... drink lots of egg nog for Abby since she can't have any this year.
And now it is over. It wasn't too bad this time, demanding but not too bad. It is nice to know what the overall tone of these weeks will be like. Abby wants to be held a lot and is generally tired and a bit moody. Also hungry of course and like to rest a lot instead of playing. But that is pretty good really, I'm glad that she tolerates it so well.
Other than that, not much has gone on around here... that is probably a good thing. I like it when it isn't so exciting/crazy around here... ahhh relaxation!
Merry Christmas... drink lots of egg nog for Abby since she can't have any this year.
Sunday, December 04, 2005
Schreiber Baby..... #3
Just a quick post to let all you know, if you haven't already heard, that the Schreiber Clan will be getting bigger in May. Tiffany is about 14 weeks along and is doing pretty good, still a lot of morning, noon, and night sickness, but she thinks that things are starting to calm down a bit.
Anywho, just wanted to let you all know in a really impersonal way, yet efficient way:)
Hope all is well with you and yours
Wednesday, November 30, 2005
Challenges and Triumphs
So for the Milken Award I had to write some essays about different parts of my teaching style, my career, aspirations and such. One question asked me to respond to the "biggest challenges and triumphs" in my life. I thought you all might like to hear what I wrote so here it is.
A year ago, I would have had a hard time finding examples to answer a question like this about challenges and triumphs but life last year has left me well versed in challenges, now I have plenty of examples. Last year, on December 31st 2005, my 3-year-old daughter Abby was diagnosed with Acute Lymphoblastic, Leukemia. To put it simply this has been the hardest and most challenging yet also the most rewarding year of my life.
I don't know if I can explain what it is like to have a child with a potentially deadly illness. I don't know if I can put into words how it feels to hold your cold and clammy shell of a child on the 4th day of a 103 degree fever while a doctor tells you the diagnosis of cancer and then sends you rushing down to Denver all the while wondering if you will lose her before this is all said and done. I can't even begin to express how tough it is to not only watch your child get, but also have to give, chemo "medicine" that make her feel more sick than when she started; medicine that makes her faces puffy, her mood erratic, and her legs so week that she is left only to crawl around on the floor on the rare occasion that she feels like playing. How do you explain to a 3-year-old the concept of cancer? How do you explain to a child why they feel so miserable and why they don't have hair when other kids do? Why they have to wear a mask and can't go to play with their friends in Sunday school anymore?
Yes, I've had difficulties, and possibly will have even more before this whole thing is done. But in the midst of crazy life that I've taken on as normal, I also have seen some of my biggest triumphs. Obviously there is the triumph of my daughter beating this cancer so far, but even more so, I've got to learn more about what true relationships are. I've seen family and friends, students and coworkers rally around me and my family so much in this last year. This has helped me understand what love is in a way that I will never be able to explain or forget. I would say that because of this, the biggest triumph for me personally is my growth in humility. So many people have given so much to me and my family and I will never be able to repay them. All I can say is a simple, humble, "thank you".
Basically, before this happened I would have probably written a response to this question in a way that outlined my professional growth, maybe my job change and the challenges and triumphs that were involved. Now though, it is much different. I see triumphs all over the place. From the struggling kid that finally "gets it" to the love I feel from my friends and family, these are all big triumphs in my mind. But the biggest one of all is when I come home from work, open up the front door, and get to see my beautiful little girls, one bald-headed and one with hair, come running to give me a hug. Just the fact that I get to hold both of my girls in my arms is a triumph that I don't think I will ever fully be able to explain. I still get to hold both of them, they are both still alive, not just one, but both. what could be a bigger triumph than that?
A year ago, I would have had a hard time finding examples to answer a question like this about challenges and triumphs but life last year has left me well versed in challenges, now I have plenty of examples. Last year, on December 31st 2005, my 3-year-old daughter Abby was diagnosed with Acute Lymphoblastic, Leukemia. To put it simply this has been the hardest and most challenging yet also the most rewarding year of my life.
I don't know if I can explain what it is like to have a child with a potentially deadly illness. I don't know if I can put into words how it feels to hold your cold and clammy shell of a child on the 4th day of a 103 degree fever while a doctor tells you the diagnosis of cancer and then sends you rushing down to Denver all the while wondering if you will lose her before this is all said and done. I can't even begin to express how tough it is to not only watch your child get, but also have to give, chemo "medicine" that make her feel more sick than when she started; medicine that makes her faces puffy, her mood erratic, and her legs so week that she is left only to crawl around on the floor on the rare occasion that she feels like playing. How do you explain to a 3-year-old the concept of cancer? How do you explain to a child why they feel so miserable and why they don't have hair when other kids do? Why they have to wear a mask and can't go to play with their friends in Sunday school anymore?
Yes, I've had difficulties, and possibly will have even more before this whole thing is done. But in the midst of crazy life that I've taken on as normal, I also have seen some of my biggest triumphs. Obviously there is the triumph of my daughter beating this cancer so far, but even more so, I've got to learn more about what true relationships are. I've seen family and friends, students and coworkers rally around me and my family so much in this last year. This has helped me understand what love is in a way that I will never be able to explain or forget. I would say that because of this, the biggest triumph for me personally is my growth in humility. So many people have given so much to me and my family and I will never be able to repay them. All I can say is a simple, humble, "thank you".
Basically, before this happened I would have probably written a response to this question in a way that outlined my professional growth, maybe my job change and the challenges and triumphs that were involved. Now though, it is much different. I see triumphs all over the place. From the struggling kid that finally "gets it" to the love I feel from my friends and family, these are all big triumphs in my mind. But the biggest one of all is when I come home from work, open up the front door, and get to see my beautiful little girls, one bald-headed and one with hair, come running to give me a hug. Just the fact that I get to hold both of my girls in my arms is a triumph that I don't think I will ever fully be able to explain. I still get to hold both of them, they are both still alive, not just one, but both. what could be a bigger triumph than that?
Friday, November 18, 2005
Back to glasses
Just a quick update on Abby's appointments this week. Her eye appointment was good, the surgery worked but one of her eyes is still misaligned so she will need to wear her glasses again. The doctor said that the alignment will ussually go away as they get older and the kids will just grow out of it. This misalignment happens to about 1/3 of all successful surgeries.
As for the CHOA appointment, all went well. No spinal tap this month, so she only had a blood draw, and Vincristine, oral Methotrexate, and the week of Decadron plus her normal nightly 6-MP. It sounds like a lot but it is much better than having the spinal tap, a nice "break" if you may.
Abby's a little clingy and grumpy this week but that is to be expected. Hopefully she will be a little better by the time that we go on the road trip in a few days. Well, that's about it, have a great day!
As for the CHOA appointment, all went well. No spinal tap this month, so she only had a blood draw, and Vincristine, oral Methotrexate, and the week of Decadron plus her normal nightly 6-MP. It sounds like a lot but it is much better than having the spinal tap, a nice "break" if you may.
Abby's a little clingy and grumpy this week but that is to be expected. Hopefully she will be a little better by the time that we go on the road trip in a few days. Well, that's about it, have a great day!
Sunday, November 13, 2005
On to the next pulse
So tomorrow Abby will start her third chemo pulse of the long term maintenance treatment. I'll tell you next week for sure, but it really hasn't been that bad for her or us. She is a bit out of it mentally, probably from the Methotrexate, for a few days but seems to come back to the real world for frequent visits during the whole week. The grumpiness hasn't been too bad either, at least when compared to her 21 day stint on it that one time... That was rough! Her hunger definitely goes up during these pulses and she can be a bit demanding about it but it really has been OK. At least she doesn't get up at night and raid our pantry anymore!So, I'll have to tell you how it all went next week but I think it going to be alright. Actually for the last day of the pulse, or the day following, we'll be driving in the van up to Utah and then on to Idaho for Thanksgiving. So, if she is grumpy and just wants to eat a lot on the trip that will be fine because that's what people do on trips anyway right?
Abby has a lot going on tomorrow so please be praying for good results. She has an early eye doctor appointment where they will tell us if things are looking good or if they will still need to do something else to help her eyes track correctly. I hope she passes with flying colors. After that she will go to CHOA to see Dr. Smith. She doesn't get a spinal tap tomorrow so that's good! She'll get oral Methotrexate, a Vincristine IV push and she'll start on Decadron. Pretty light day really. They'll do the normal blood work and check her out to see how she is doing overall and that will be it for another month. Much better than going down 1 to 4 times a week like we did in the past!
We'll I better go get the little ones. We hope all is going well in your neck of the woods too.
Sunday, November 06, 2005
Contrast
Sitting here staring at the fire, listening to a bit of George Winston Autum. This stuff always reminds me of living in our old house on Mulberry, where it was so noisy from the constant traffic that we played music all of the time. But the music helps me write and sometimes it's a bit hard to write down my thoughts about my family to a whole group of people that I may know or may not. Interesting stuff this public journaling. Maybe that's why I haven't written for a while. Ya sure, there has been a lot going on in life, but I don't think that is it really. Yes, we've all been sick since almost Abby's last pulse treatment, and yes that award did take over some of my minds thought capacity, but overall, I just don't think I've wanted to write. Both Tiffany and I have been very reflective lately. Reflective mostly about life and Abby.You see, the end of October, or early November, was when Abby actually got Leukemia. Since it is a blood cancer, they can tell pretty well when the Leukemik cells started to appear and thus started to breed out the normal blood cells by the normal blood cells half life. I don't quite understand it, but it was within these 2 to 3 weeks a year ago. So, we go to the pumpkin patch and though I enjoyed it, in the back of my mind was this little voice saying, "she had it last year and you didn't know". Or saying, "she used to be normal last time we where here". I know weird thoughts but I guess it is just part of the process of greiving the loss of our old life, our cancer free life. A life where we all got to go to church on Sunday morning as a family, a life where we didn't have to worry about Abby getting sick from such a low immunity, just a more normal life really.
I know you all know it, but let me restate it. Life has been hard in the last 10 months for the Schreiber family. Lots of great things, don't get me wrong, but still hard. I think I'm comming to a place though where in a weird way I welcome Abby's cancer in our family because of all of the great things that it has also brought into our life. But just as often, and especially as we approach her diagnosis date, I think about how I'd rather trade all of the awards, money, and anything else that I could just to have my little cancer-free girl back from last year. But that's not how it is, and that's ok. What a joy she is. Maybe we'll pile up some leaves this afternoon and she can jump in them like last year. That will be fun and on perk is that any pictures that I take I'll be able to easily identify in the future since she still doesn't have much hair! What a cutie. Thanks again for checking in on Abby and the Schreiber family as a whole.
Wednesday, October 26, 2005
I'm in a Daze... but it's not from Decadron!
This afternoon at a school wide assembly a bunch of people from the Colorado Department of Education gave a give presentation to our whole school. As the assembly went on it became clear that one teacher in the school would be getting an award... a big award. They talked about the trip to Washington D.C., the black tie banquet in Denver and then started to add zeros to the dollar amount of the cash prize. 25, 250, 2500... then another zero, $25,000. Some teacher in our building was going to get 25k for teaching! I started to think who it was going to be... Dr. Madden? Some elementary teacher?... as they rolled out the giant check with the name on it I couldn't believe my eyes... It was my name, Mark Schreiber. They called my name and my body stopped working as hamsters started running faster on their wheels to try to power up my brain. I think my thought process was something like this..."my name was just called".... "there seems to be writing on a giant check up there with my name on it"... processing.... processing..."I think I may need to walk up there"... processing..."everyone is looking at me"... processing... "ya, that really is my name"... it seemed like forever, but somehow the message finally got to my feet and I started to walk towards the Department of Ed. folks to shake some hands.
Shocked is about the most mild way to put this, dazed may be a better term. Me? A National Teacher of the Year? One of 2 recipients in Colorado this year? 25 grand cash award? A trip to Washington D.C. and a black tie event in Denver? Crazy stuff. Slowly but surely it is sinking in. And yes, I think I'm still blushing.
You know just a few days ago I was looking at a large stack of medical bills and looking at our budget wondering how as a teacher I was going to pull this all off. As you can imagine, I was getting pretty stressed too. I try to depend on God in all of this stuff with Abby, but sometimes I just don't do a very good job with that. I was thinking how I was never going to be able to make this work, and then 2 days later this happens. This type of stuff seems to happen a lot and still I doubt God's provision in my families life... So much blessing on our family from friends, from our family, from my school, from all of you that faithfully read my ramble and pray for my daughter... man! I am a very lucky guy.
Thanks again for all of your prayers, support, love and compassion on my family! We definitely feel loved!
Shocked is about the most mild way to put this, dazed may be a better term. Me? A National Teacher of the Year? One of 2 recipients in Colorado this year? 25 grand cash award? A trip to Washington D.C. and a black tie event in Denver? Crazy stuff. Slowly but surely it is sinking in. And yes, I think I'm still blushing.
You know just a few days ago I was looking at a large stack of medical bills and looking at our budget wondering how as a teacher I was going to pull this all off. As you can imagine, I was getting pretty stressed too. I try to depend on God in all of this stuff with Abby, but sometimes I just don't do a very good job with that. I was thinking how I was never going to be able to make this work, and then 2 days later this happens. This type of stuff seems to happen a lot and still I doubt God's provision in my families life... So much blessing on our family from friends, from our family, from my school, from all of you that faithfully read my ramble and pray for my daughter... man! I am a very lucky guy.
Thanks again for all of your prayers, support, love and compassion on my family! We definitely feel loved!
Sunday, October 23, 2005
Decadron Daze are over... for now
Just a quick post to let you all know that Abby is done with her second pulse in this Maintinace phase. Her last Decadron (grumpy/hungry pill) was taken this morning, so hopefully she will be more like her normal self tomorrow.
She did almost suck her two middle fingers off though trying to comfort herself during last week and was rarely seen without her blanket. She did seem pretty normal though for most of the week, not too hungry, not too whiney, and played pretty well for a good part of the day before she would tank out. The first few days she did want to be held a lot and then today she also wanted to be held a lot but otherwise she did fine.
See what else... lots going on in life right now for me but on the Abby front it is pretty calm.
Good night and I'll try to post some more info and pics soon.
She did almost suck her two middle fingers off though trying to comfort herself during last week and was rarely seen without her blanket. She did seem pretty normal though for most of the week, not too hungry, not too whiney, and played pretty well for a good part of the day before she would tank out. The first few days she did want to be held a lot and then today she also wanted to be held a lot but otherwise she did fine.
See what else... lots going on in life right now for me but on the Abby front it is pretty calm.
Good night and I'll try to post some more info and pics soon.
Wednesday, October 12, 2005
Long Haul
It struck me last night as I crushed up Abby's nightly medicine and smothered them in chocolate syrup that we are going to be doing this for the long haul. Every night for the next year and 1/2 I'll continue to crush up some little pills douse them with syrup and have Abby take them with lots of water. It not that this make me really sad or even discouraged, just the way it is going to be. Maybe this is a good sign, a sign that things are going so well that I can start to let myself think more about the future without getting sad and discouraged. That's still a lot of crushing, but hey, if it helps her that's what I'll do.
So like I said, Abby is doing really good. She was a little nauseous from the Methotrexate on Monday night and all of yesterday but pretty mild in comparison to what we've seen. We'll start another Decadron pulse next Tuesday along with a spinal tap, Vincristine and all of the other "normal" home chemo meds. I think this one will be a good example of what these pulses may look like, how she'll feel and such, since she won't have had surgery along with it. Hopefully she isn't too grumpy.
On the University Village front I think I've got to the end of the road there for now. I finally got in touch with a statistical analysis person at the Colorado Central Cancer Repository (CCCR) and they were very helpful. Statistically the occurrences that I reported to him are not significant. They get about 200 calls from the public like mine each year and based on several factors they either can classify it as a cancer cluster or not. These instances would just be chalked up to chance on the statistical side.... ya I know it seems like there should be a connection, but I can also see this other side pretty clearly too. If it was a rare cancer, all the same type of cancer, or a higher number then it would start to become more significant but since it was 2 of the most common cancers in kids, ALL and Brain Cancer, it isn't as significant. Also since there are so many kids in that complex it also is less significant because there is a greater concentration of kids than in a normal population sample. Finally, even if it was significant, because of a large number of the same types of cancers, or a bunch of rare cancers, it would be really hard to calculate accurately anything about UV because it is such a moving target, people only live there for a couple years, and then move on.
So, I'm going to talk to the UV manager to see if he will just keep tracking any more occurrences and also talk to CSU to see if they want to investigate it further. For me though, I don't think I can do much more. If there is another case of ALL though... well, then I've got a problem.
Hope all is well with you!
So like I said, Abby is doing really good. She was a little nauseous from the Methotrexate on Monday night and all of yesterday but pretty mild in comparison to what we've seen. We'll start another Decadron pulse next Tuesday along with a spinal tap, Vincristine and all of the other "normal" home chemo meds. I think this one will be a good example of what these pulses may look like, how she'll feel and such, since she won't have had surgery along with it. Hopefully she isn't too grumpy.
On the University Village front I think I've got to the end of the road there for now. I finally got in touch with a statistical analysis person at the Colorado Central Cancer Repository (CCCR) and they were very helpful. Statistically the occurrences that I reported to him are not significant. They get about 200 calls from the public like mine each year and based on several factors they either can classify it as a cancer cluster or not. These instances would just be chalked up to chance on the statistical side.... ya I know it seems like there should be a connection, but I can also see this other side pretty clearly too. If it was a rare cancer, all the same type of cancer, or a higher number then it would start to become more significant but since it was 2 of the most common cancers in kids, ALL and Brain Cancer, it isn't as significant. Also since there are so many kids in that complex it also is less significant because there is a greater concentration of kids than in a normal population sample. Finally, even if it was significant, because of a large number of the same types of cancers, or a bunch of rare cancers, it would be really hard to calculate accurately anything about UV because it is such a moving target, people only live there for a couple years, and then move on.
So, I'm going to talk to the UV manager to see if he will just keep tracking any more occurrences and also talk to CSU to see if they want to investigate it further. For me though, I don't think I can do much more. If there is another case of ALL though... well, then I've got a problem.
Hope all is well with you!
Wednesday, October 05, 2005
More cancer research
So, I've been a little obsessed lately with cancer research based on geography. I've been up too late for my own good searching the ol' Internet for info. And talking to people from University Village (UV) that know a few more of the facts about what has gone on there in the last few years in terms of cancer occurances, especially with kids.
Here's what I've found:
More than one case of a single type of cancer in a small region could still statistically be attributed to chance. One site that I saw talking about statistically analysis of cancer occurances said that it would take 16-18 instances of the same type of cancer in a population of 200,000 people, in the same geographical area, to no be attributed to chance. I'm not sure how large of an area they were speaking of but it does show that these could just be a crazy coincidence. Doesn't seem like it to me, but it could be attributed to chance. I think a lot of this came from a bunch of ALL case in Fallon.
Also I talked to an old long time resident of UV last night and confirmed some of the information from the last post. Here it is:
6 kids total have been diagnosed with cancer while living in UV in the last 4ish years.
1 with bone cancer, age 1? I think
2 with ALL (Abby and the girl that we saw down at light the night). Both diagnosed at age 3.
2 with brain tumors... not sure of their ages but I think both were young.
1 with Lymphoma, age 16 at diagnosis...lived in the building adjacent to us. Not sure of what type of lymphoma but some non spreading type that effected some nodes in his chest, neck and groin.
So 6 kids. But according to research only the same type of cancer can really be linked together for statistical puposes sooo.... hmmm. Very interesting stuff to me.
Anyway here's what I'm doing:
I've called the UV manager to let him know what I'm doing and see if he has records of any other cancer case.
I've contacted the CCCR Colorado Central Cancer Repository... (thanks Julie for the comment on this) and they are going to call me back. These Central repositories are set up in most states now and they track all occurances of cancer based on type of cancer and geographical data. They also will research reports of "clusters" from the general public. So that's what I'm going to ask about.
I'm trying to take this research from the bottom up so that the people at UV don't get a bunch of top down presure with out being in the loop. Actually, I think most of the people at UV have kids and all of them live there so they all definately have a reason to want to help. Hopefully none of their kids get something. Maybe it is just a statisical anomaly? Definately weird though huh?
Other than that obsession of mine, things have been pretty normal. Abby's doing good. Her counts are good, and she has great energy. Her next pulse of Decadron is in 2 weeks as well as a spinal tap, and Vincristine. Until that time, we are just pluging away and having fun.
More news on all of the Schreiber's crazy life to come soon... and yes it's just gonna get crazier.
Here's what I've found:
More than one case of a single type of cancer in a small region could still statistically be attributed to chance. One site that I saw talking about statistically analysis of cancer occurances said that it would take 16-18 instances of the same type of cancer in a population of 200,000 people, in the same geographical area, to no be attributed to chance. I'm not sure how large of an area they were speaking of but it does show that these could just be a crazy coincidence. Doesn't seem like it to me, but it could be attributed to chance. I think a lot of this came from a bunch of ALL case in Fallon.
Also I talked to an old long time resident of UV last night and confirmed some of the information from the last post. Here it is:
6 kids total have been diagnosed with cancer while living in UV in the last 4ish years.
1 with bone cancer, age 1? I think
2 with ALL (Abby and the girl that we saw down at light the night). Both diagnosed at age 3.
2 with brain tumors... not sure of their ages but I think both were young.
1 with Lymphoma, age 16 at diagnosis...lived in the building adjacent to us. Not sure of what type of lymphoma but some non spreading type that effected some nodes in his chest, neck and groin.
So 6 kids. But according to research only the same type of cancer can really be linked together for statistical puposes sooo.... hmmm. Very interesting stuff to me.
Anyway here's what I'm doing:
I've called the UV manager to let him know what I'm doing and see if he has records of any other cancer case.
I've contacted the CCCR Colorado Central Cancer Repository... (thanks Julie for the comment on this) and they are going to call me back. These Central repositories are set up in most states now and they track all occurances of cancer based on type of cancer and geographical data. They also will research reports of "clusters" from the general public. So that's what I'm going to ask about.
I'm trying to take this research from the bottom up so that the people at UV don't get a bunch of top down presure with out being in the loop. Actually, I think most of the people at UV have kids and all of them live there so they all definately have a reason to want to help. Hopefully none of their kids get something. Maybe it is just a statisical anomaly? Definately weird though huh?
Other than that obsession of mine, things have been pretty normal. Abby's doing good. Her counts are good, and she has great energy. Her next pulse of Decadron is in 2 weeks as well as a spinal tap, and Vincristine. Until that time, we are just pluging away and having fun.
More news on all of the Schreiber's crazy life to come soon... and yes it's just gonna get crazier.
Tuesday, September 27, 2005
Light the Night, and a Wierd Encounter
I almost forgot to post about the Light the Night event that we went to on Friday night and some things that make you go... Hmmm.
So, we went to the Leukemia and Lymphoma "Light the Night" event and walked around Old Town Fort Collins with lit up balloons to help make money for the Leukemia and Lymphoma society. It was a good event all in all but there was this one weird thing...
We were getting registered when Tiffany and I recognized a young couple who also used to live at UV, University Village. I went over to ask them if they had lived at UV and the first thing she asked me was, "did you live in the 1600's?" I told her yes and asked her about her daughter, who seemed to have the typical round puffy cheeks of a kid with cancer. Her daughter, also has A.L.L. and also lived in the 1600 campus of CSU's Married Student Housing in UV. She proceeded to tell me of several other people who had contracted Leukemia, Lymphoma, and other cancers, at least 4 of them kids, all in the 1600 block of UV, 8 total.
So, basically that really sucks. I know that I couldn't have know about that when I signed up for graduate school and moved our family into UV... But it still stinks. And it stinks for all the kids that are still living there. I wonder if anyone will get it this fall? To me, there is an obvious link. There is no way in my mind that when 3000 kids a year get A.L.L. that 2 of them would get it 2 years in a row and in the same building complex!
So, I don't know what to do from here, but I don't see myself being able to let it go. CSU has to have good records of everything that has been sprayed around there, everything that those old buildings are made of, and much much more. It seems like a great opportunity to help figure out what may be one of the causes of Leukemia and Lymphoma.
Anybody have any ideas of where to start?
So, we went to the Leukemia and Lymphoma "Light the Night" event and walked around Old Town Fort Collins with lit up balloons to help make money for the Leukemia and Lymphoma society. It was a good event all in all but there was this one weird thing...
We were getting registered when Tiffany and I recognized a young couple who also used to live at UV, University Village. I went over to ask them if they had lived at UV and the first thing she asked me was, "did you live in the 1600's?" I told her yes and asked her about her daughter, who seemed to have the typical round puffy cheeks of a kid with cancer. Her daughter, also has A.L.L. and also lived in the 1600 campus of CSU's Married Student Housing in UV. She proceeded to tell me of several other people who had contracted Leukemia, Lymphoma, and other cancers, at least 4 of them kids, all in the 1600 block of UV, 8 total.
So, basically that really sucks. I know that I couldn't have know about that when I signed up for graduate school and moved our family into UV... But it still stinks. And it stinks for all the kids that are still living there. I wonder if anyone will get it this fall? To me, there is an obvious link. There is no way in my mind that when 3000 kids a year get A.L.L. that 2 of them would get it 2 years in a row and in the same building complex!
So, I don't know what to do from here, but I don't see myself being able to let it go. CSU has to have good records of everything that has been sprayed around there, everything that those old buildings are made of, and much much more. It seems like a great opportunity to help figure out what may be one of the causes of Leukemia and Lymphoma.
Anybody have any ideas of where to start?
Eye Follow Up Exam
So Abby's doing really good lately, still not sleeping through the night yet, but we'll keep working on that one.
Tiffany and her mom and Anna, took Abby down to see the eye doctor early Monday morning... Anna drove. Just wanted to see if you were paying attention. Anyway they all went down to see Dr. King. He said that everything looked perfect for this point and now it's just up to the brain to snap it all back together. We won't know if the brain has started to drive both eyes, man everyone driving in this blog entry, for about another couple months. Until then Abby won't need to wear her glasses and in a week or so her eyes won't be so bloodshot either. So hopefully she will have straight eyes from now on!
That's about all on the medical front until our next appointment on Tuesday next week.
Tiffany and her mom and Anna, took Abby down to see the eye doctor early Monday morning... Anna drove. Just wanted to see if you were paying attention. Anyway they all went down to see Dr. King. He said that everything looked perfect for this point and now it's just up to the brain to snap it all back together. We won't know if the brain has started to drive both eyes, man everyone driving in this blog entry, for about another couple months. Until then Abby won't need to wear her glasses and in a week or so her eyes won't be so bloodshot either. So hopefully she will have straight eyes from now on!
That's about all on the medical front until our next appointment on Tuesday next week.
Friday, September 23, 2005
Out of the fog
Just a quick FYI to let you know that the Decadron fog has lifted in the Schreiber household and Abby has been reported to be in good spirits.
I came home from work yesterday not to find her waiting by the door for my like a lost puppy, but instead playing with Anna. Pretending to draw her outline on the floor like she must have seen on one of our videos. They giggle and laughed all the way through dinner pretending that their rice was some different food... "you want some potatoes Anna?" Anna replies, "You want some green beans Abby?" and on and on... They both were almost crying with laughter... Does my heart good!
Just nice to know that Abby can be almost back to herself, still a little tired, just a couple days after some pretty major surgeries and chemo treatments.
Hope all is well in your world too ;)
I came home from work yesterday not to find her waiting by the door for my like a lost puppy, but instead playing with Anna. Pretending to draw her outline on the floor like she must have seen on one of our videos. They giggle and laughed all the way through dinner pretending that their rice was some different food... "you want some potatoes Anna?" Anna replies, "You want some green beans Abby?" and on and on... They both were almost crying with laughter... Does my heart good!
Just nice to know that Abby can be almost back to herself, still a little tired, just a couple days after some pretty major surgeries and chemo treatments.
Hope all is well in your world too ;)
Wednesday, September 21, 2005
Abby's doing "OK"
So, Abby had her last dose of Decadron this morning so hopefully she will be back to herself in a few days. She was pretty sore the first day home, Saturday, and the rest of the week she has been doing so so. Some days have been pretty good, not too whiney, and not super hungry either. Most afternoons she has been pretty grumpy and very clingy, she would be content just being held all day long. Often she just sits at Tiffany's feet while she does the dishes or fixes a meal. Today, I found her sitting on the rug by the back door waiting for me to come home to hold her. So, hopefully she will feel better soon.
At least she has been sleeping well, for the most part. She's only really had one terrible night, the rest have been pretty good.
That's about it, not much to report, just a tired sore little girl that wants to be held because, as she says, "I'm just not feeling good" and, "I'm just having a hard time"...
Speaking of sleep... I better get some rest too.
At least she has been sleeping well, for the most part. She's only really had one terrible night, the rest have been pretty good.
That's about it, not much to report, just a tired sore little girl that wants to be held because, as she says, "I'm just not feeling good" and, "I'm just having a hard time"...
Speaking of sleep... I better get some rest too.
Sunday, September 18, 2005
5 day forecast
Sunny skies were overhead all week long last week so it must be time for a change. A sudden cold pressure system, attributed to Decadron, (i.e. the grumpy pill) moved in quickly on Friday and seems like it will be hanging around for the next few days.
The forecast for all 4 remaining days is as follows:
Sunday---Partly sunny with sudden intense Thundershowers showing up only to vanish seconds later
Monday---Afternoon looming clouds with a chance of the demands for noodles to fall out of the sky
Tuesday---More Thundershowers, often intense in nature, followed by high gusts of a whiney sounding wind that seems to sound like my daughter asking for food... must just be the wind.
Wednesday--- Ever changing weather, suggest wearing "layers", as hammock sitting weather may be on one side of the yard while gusty winds and rain engulf the other side... wear sunscreen, SPF 82, and bring your umbrella.
a.. Thursday--- Weather should be tapering down as the Decadron front moves out to sea... only to gain strength for another visit in 3 weeks. Sun should come back to the region as will the presence of my kind, sane little girl.
Ahhh.... the joys of Decadron!:) Pray that the weather stays clearer than my forecast predicts... hopefully I'm a bad weatherman.
Till another break in the weather.
The forecast for all 4 remaining days is as follows:
Sunday---Partly sunny with sudden intense Thundershowers showing up only to vanish seconds later
Monday---Afternoon looming clouds with a chance of the demands for noodles to fall out of the sky
Tuesday---More Thundershowers, often intense in nature, followed by high gusts of a whiney sounding wind that seems to sound like my daughter asking for food... must just be the wind.
Wednesday--- Ever changing weather, suggest wearing "layers", as hammock sitting weather may be on one side of the yard while gusty winds and rain engulf the other side... wear sunscreen, SPF 82, and bring your umbrella.
a.. Thursday--- Weather should be tapering down as the Decadron front moves out to sea... only to gain strength for another visit in 3 weeks. Sun should come back to the region as will the presence of my kind, sane little girl.
Ahhh.... the joys of Decadron!:) Pray that the weather stays clearer than my forecast predicts... hopefully I'm a bad weatherman.
Till another break in the weather.
Saturday, September 17, 2005
Home and Healing
Well, we got home earlier than expected last night, around dinner time. Our good friends the Maddocks had dropped off dinner and it was waiting for us. I (Tiffany) sat with Abby while Mark got it all ready. She did really well. She doesn't do well with one of the relaxing meds they give before going into the OR so Mark went in with her, all gowned up. He said she was just chatting away with everyone and asking about what everything was. Then they put her under and he laid her down on the bed and left. 3 hours later we saw all the docs (in the meantime I took Anna to the zoo, she had a ball) and everything went fine. She has a new mediport on the opposite side (left) and the broviac site is healing without stitches. Her eyes are pretty red and bruised but will look worse than they feel for her. She also had a spinal tap and two doses of chemo. She came out of the anisthesia pretty confused and upset that her eyes were draining and she couldn't see but once we got her into the van she fell asleep and did fine for the drive home. Anna sang us Barney songs and a few made up ones of her own about flushing the potty the whole way home so we were kept entertained! Thanks for all the prayers! The next few days will be filled with her getting used to her eyes, healing from all the pokes and prods and starting the side effects of the steroid and other two oral chemo meds we started yesterday for this new maintenance phase of her treatment. So pray for lots of patience for us and that no infection develops in her eyes, there's a 10% chance of one. But all her blood work is excellent right now so that's good! Oh, and the doc said that the broviac needed to come out, it was hanging by a thread and looking pretty, well, lets just say it wasn't as clean as when it went in!
Thursday, September 15, 2005
Surgery Tomorrow (or today, if it's Friday when you read this:))
I've know this was coming. I've known it. But once again, over the head it has hit me.
Tomorrow morning we will make our trek down to Denver again for another start of yet another phase, the last and longest phase, Maintenance. A rotating cycle of redundant treatment that will last about a year and a half. We'll start it all off as I said in the last post with a barrage of surgeries, chemo treatments and oral meds at home... just to keep things exciting.
And oh yes, don't forget about Decadron! Grumpy Ville, here we come. Hopefully it will be a bit better this time... but I'm not holding my breath. I think the hardest part of these time is the fact that she is always doing so good right before them! Swinging, playing, laughing, running... And then tomorrow, things will change and she may be back to sitting on the couch sucking on her fingers, smelling her blanket and asking for lots of pasta dishes to keep her satiated. Just not really looking forward to it if I may say so.
But on the flip side, we have had a great few weeks and this will be mild in comparison to Delayed Intensification! Even if it is tough, it should only be that way for about a week. Once the Decadron wears off, she should bounce right back. And it's fall, our favorite season! So, once again we'll take it in stride... but that stride still concerns me.
I was talking to a friend at work and saying something about how this whole treatment has felt like a really long run. The first part you are just pooped but then you kind of get in the groove, get your second wind and feel pretty good, then further along, you really feel good...still hard but you're just in the zone. That's were I feel like I am lately, just came off a big hard run up a hill but I'm still running, the whole family is actually, and yet I feel really good. My concern though is that somewhere in this next part of the race, the year and a half long part, that I'm gonna hit the wall, bonk out, my legs finally failing me...
That's my concern, that's my metaphor, that's my families' life right now.
Pray that things go well tomorrow, that Abby does as incredible as she has in the past, and that our families emotional, spiritual, and physical tanks will be filled up for the journey that still lies ahead!
Thanks for all of your comments, prayers, encouragement, notes, meals, financial help, friendships, and even for taking time out of your day to read my often disjointed little rambling about Abby, my little trooper of a girl who has been through more than I'll ever be able to comprehend... and still, for the majority of the time, has a smile... A BIG, BIG smile on her face.
Tomorrow morning we will make our trek down to Denver again for another start of yet another phase, the last and longest phase, Maintenance. A rotating cycle of redundant treatment that will last about a year and a half. We'll start it all off as I said in the last post with a barrage of surgeries, chemo treatments and oral meds at home... just to keep things exciting.
And oh yes, don't forget about Decadron! Grumpy Ville, here we come. Hopefully it will be a bit better this time... but I'm not holding my breath. I think the hardest part of these time is the fact that she is always doing so good right before them! Swinging, playing, laughing, running... And then tomorrow, things will change and she may be back to sitting on the couch sucking on her fingers, smelling her blanket and asking for lots of pasta dishes to keep her satiated. Just not really looking forward to it if I may say so.
But on the flip side, we have had a great few weeks and this will be mild in comparison to Delayed Intensification! Even if it is tough, it should only be that way for about a week. Once the Decadron wears off, she should bounce right back. And it's fall, our favorite season! So, once again we'll take it in stride... but that stride still concerns me.
I was talking to a friend at work and saying something about how this whole treatment has felt like a really long run. The first part you are just pooped but then you kind of get in the groove, get your second wind and feel pretty good, then further along, you really feel good...still hard but you're just in the zone. That's were I feel like I am lately, just came off a big hard run up a hill but I'm still running, the whole family is actually, and yet I feel really good. My concern though is that somewhere in this next part of the race, the year and a half long part, that I'm gonna hit the wall, bonk out, my legs finally failing me...
That's my concern, that's my metaphor, that's my families' life right now.
Pray that things go well tomorrow, that Abby does as incredible as she has in the past, and that our families emotional, spiritual, and physical tanks will be filled up for the journey that still lies ahead!
Thanks for all of your comments, prayers, encouragement, notes, meals, financial help, friendships, and even for taking time out of your day to read my often disjointed little rambling about Abby, my little trooper of a girl who has been through more than I'll ever be able to comprehend... and still, for the majority of the time, has a smile... A BIG, BIG smile on her face.
Friday, September 09, 2005
Lots happening in 1 week
Well, we are finally going to start... and start with a bang I may add! Not only will Abby start all of her medications for day one of this new long phase but she will also have a couple surgeries and a spinal tap! Yikes! So pray for next Friday.
So like I said, lots will be going on next Friday! Abby will have multiple doctors working on her for all her various aliments and treatments. Basically we'll check here in at 10am and then at 12 noon it all starts. First Dr. Blinman will take out her Broviac and replace it with a Med-o-port, just a different style access port for taking blood and administering chemo. It will be under the skin instead of a tube hanging out of her... I wonder if she'll miss her little "tube-e"? Next goes Dr. Smith who will do the spinal tap for the start of this long final phase. Finally Dr. King will go , who will do a corrective operation to fix that wandering eye. Actually he'll be doing surgery on both eyes to straighten her all out. Once she comes out of surgery with her new port and straightened eyes (and is awake enough to leave) we'll carry her over to Dr. Smith's office, CHOA, and she'll get an injection of Vincristine. And, if that all wasn't enough, when she gets home she'll start her new phases meds which will include 5 days of Decadron "the grumpy pill" and nightly 6-MP..... Whew that's a lot of stuff!!
So, as you might imagine, we're a bit anxious about all of this stuff but hopefully we'll warm up to it all by next Friday. It actually does make sense to do it all on the same day instead of going down multiple times and it is really nice that she can get her eye done and the Broviac at in one visit! Switching the Broviac to the Med-o-port will be the best for her in the long run, less chance of infection and no tube hanging out of her chest, but it also means that whenever she has to get blood or receive chemo she will have to get an "owee". We don't like the idea of her having to get a needle prick every time we go down to CHOA but also she has had so many blood infections that it just seems like the best thing to do at this time. If we wait until she gets another blood infection she would have to get 2 surgeries, one to take it out and then wait two days for the infection to clear until the Med-o-port could be "installed"... sometimes I feel like my daughter is a car or something, always "looking under the hood" and installing new devices... weird.
Anyway, lots will be going on next Friday. The recovery time is pretty quick for both the eye and the implant and the Decadron is only for 5 days each month... I'm sure I'll really be looking forward to those weeks huh? Who knows, maybe she won't be grumpy or ravenously hungry on such a short dose... I guess we'll find out soon!
So like I said, lots will be going on next Friday! Abby will have multiple doctors working on her for all her various aliments and treatments. Basically we'll check here in at 10am and then at 12 noon it all starts. First Dr. Blinman will take out her Broviac and replace it with a Med-o-port, just a different style access port for taking blood and administering chemo. It will be under the skin instead of a tube hanging out of her... I wonder if she'll miss her little "tube-e"? Next goes Dr. Smith who will do the spinal tap for the start of this long final phase. Finally Dr. King will go , who will do a corrective operation to fix that wandering eye. Actually he'll be doing surgery on both eyes to straighten her all out. Once she comes out of surgery with her new port and straightened eyes (and is awake enough to leave) we'll carry her over to Dr. Smith's office, CHOA, and she'll get an injection of Vincristine. And, if that all wasn't enough, when she gets home she'll start her new phases meds which will include 5 days of Decadron "the grumpy pill" and nightly 6-MP..... Whew that's a lot of stuff!!
So, as you might imagine, we're a bit anxious about all of this stuff but hopefully we'll warm up to it all by next Friday. It actually does make sense to do it all on the same day instead of going down multiple times and it is really nice that she can get her eye done and the Broviac at in one visit! Switching the Broviac to the Med-o-port will be the best for her in the long run, less chance of infection and no tube hanging out of her chest, but it also means that whenever she has to get blood or receive chemo she will have to get an "owee". We don't like the idea of her having to get a needle prick every time we go down to CHOA but also she has had so many blood infections that it just seems like the best thing to do at this time. If we wait until she gets another blood infection she would have to get 2 surgeries, one to take it out and then wait two days for the infection to clear until the Med-o-port could be "installed"... sometimes I feel like my daughter is a car or something, always "looking under the hood" and installing new devices... weird.
Anyway, lots will be going on next Friday. The recovery time is pretty quick for both the eye and the implant and the Decadron is only for 5 days each month... I'm sure I'll really be looking forward to those weeks huh? Who knows, maybe she won't be grumpy or ravenously hungry on such a short dose... I guess we'll find out soon!
Friday, September 02, 2005
Who can really say when she'll start...
Well, I thought we'd be going down today to start the Long Term Maintinance but nope, still didn't pass. Actually her counts were lower, 225 ANC from 250 last week. The other components of her blood look good though and have steadily been bouncing back. The doctors said not to worry and that it may take a while to have everything bounce back up to normal. So, the plan is to start now on Tuesday, but we have an eye appointment on the same day so I'm going to see if she can start on Wednesday instead or just later in the day on Tuesday. I'll straighten it all out with them soon, but if she still doesn't qualify on Tuesday then I don't know what they'll want to do.
She seems to be in good spirits, and it is nice to not have to give her much in the way of medicines too.
Well, stay tuned, and thanks again for all of the prayers, thoughts, comments and calls... and for just for reading too!
She seems to be in good spirits, and it is nice to not have to give her much in the way of medicines too.
Well, stay tuned, and thanks again for all of the prayers, thoughts, comments and calls... and for just for reading too!
Tuesday, August 30, 2005
Didn't pass again! :(
Well, Abby didn't pass the blood count requirement to start the next phase, she is still to low. They will test her again on Thursday and hopefully she will start on Friday. If she doesn't pass, they will most likely schedule a bone marrow aspiration again to check things out further. So, pray that she passes, I really don't want her to have to get another bone marrow test.
I really hope that it does come up soon, kind of worries me that it isn't... but I won't go down any those roads unless she doesn't pass on Thursday.
She's been doing relatively good in the 2 weeks since she's been off treatment, gets tired sometimes but really does good for having such low blood counts. Once her hemoglobin comes back up we are planning on going up the canyon a bit to see if any leaves have started to change up there, that is always a pretty time of year for the mountians.
Anyway, I'll write more on Thursday when we know the plan.
I really hope that it does come up soon, kind of worries me that it isn't... but I won't go down any those roads unless she doesn't pass on Thursday.
She's been doing relatively good in the 2 weeks since she's been off treatment, gets tired sometimes but really does good for having such low blood counts. Once her hemoglobin comes back up we are planning on going up the canyon a bit to see if any leaves have started to change up there, that is always a pretty time of year for the mountians.
Anyway, I'll write more on Thursday when we know the plan.
Thursday, August 25, 2005
On to the last phase... on Tuesday
So, Abby didn't pass on Tuesday, in terms of her counts, so she will have to wait until next week to start her final phase. That is fine with me, it is nice to have another little break, if you can call it that. She had a bit of a fever today, so pray that it isn't the beginning of another blood infection. It seems like every time she starts to get a low grade fever, something is brewing inside of her. She still in neuotropinic, under 500 ANC of her immunity count, so we have to watch all of that stuff closely. Also because of her ANC we can't take her out to crowded places or around sick people... that means once again we are hermitized for a bit. Hopefully her counts will come up soon and we can once again rejoin society as normal folk... for the most part anyway :)!
Other than that, things are still rockin' and rollin' around here. Anna decided that she wanted to become a big girl and use the "potty" instead of diapers and so we are on the potty training road... hopefully it will be a short trip. I'm getting more into the groove of the school year and am looking forward to Labor day weekend already! Actually the kiddos are fun, and I enjoy my classes, just long days compared to the flexible summer.
Off to sleep, I have to get up at 6am again tomorrow:(
Other than that, things are still rockin' and rollin' around here. Anna decided that she wanted to become a big girl and use the "potty" instead of diapers and so we are on the potty training road... hopefully it will be a short trip. I'm getting more into the groove of the school year and am looking forward to Labor day weekend already! Actually the kiddos are fun, and I enjoy my classes, just long days compared to the flexible summer.
Off to sleep, I have to get up at 6am again tomorrow:(
Saturday, August 20, 2005
Happy B-Day to Abby's Mom:)
Today is my lovely bride's Birthday! 33 years old! How crazy is that huh?! We still feel like kids except now we have kids too! Weird. But it is true and so we will celebrate!
One thing that has really hit me during these last several months of Abby's treatment is how much I love my wife. She is an amazing woman, let me just tell you that. In relation to Abby and Anna, she is the best mom around. As my wife... hands down... the best I could ever wish for!
These last few months have been stressful, yes, and through it all Tiffany has been there to hug, cry with, and talk to about deep things, life and death, God and who He really is, how spirituality and life's hardships really line up, and on and on... Lots of tears have been shed, voices been raised, and deep thoughts have been thought until my mind seemed too full to function... and through it all, my wife has been there, in-the-trenches, if you may, with all of this care our family.
I just want you wish my wife, yes you Tiffany Schreiber, the brightest happiest fulfilling birthday that you've every had!
One thing that has really hit me during these last several months of Abby's treatment is how much I love my wife. She is an amazing woman, let me just tell you that. In relation to Abby and Anna, she is the best mom around. As my wife... hands down... the best I could ever wish for!
These last few months have been stressful, yes, and through it all Tiffany has been there to hug, cry with, and talk to about deep things, life and death, God and who He really is, how spirituality and life's hardships really line up, and on and on... Lots of tears have been shed, voices been raised, and deep thoughts have been thought until my mind seemed too full to function... and through it all, my wife has been there, in-the-trenches, if you may, with all of this care our family.
I just want you wish my wife, yes you Tiffany Schreiber, the brightest happiest fulfilling birthday that you've every had!
Sunday, August 14, 2005
Still doing relativly "good"
You know people often ask me how Abby is doing these days and the reply I get to give them lately is "really good". That response is a little misleading in some ways though. I mean yes, side effect wise... she is doing outstanding, no mouth sores, no major hospitalizations, no heart problems, the list goes on and on. But I think I've also gotten used to some crazy things that I see as pretty routine. 2 blood transfusions in the last couple weeks, a extremely low platelet count last Thursday that made us drop everything and run her down to Denver, the effects of the last low platelet count expressed in her crooked eye gaze from that retinal hemorrhage last winter, not being able to take Abby out to public places until her counts come back up... Oh I could go on and on, but the point is that I just consider these medical procedures, like monthly spinal taps, routine and normal. Kind of weird what we can get accustomed to huh?!
Anyway, now that we are getting a bit more rested and normal around here, I'm starting to think a little bit more about how the whole DI experience effected us as a family. And all in all, I think we came out relatively unscathed. Medically, yes Abby did great! Anna, has gotten a little more demanding of our attention, expressed in very commanding renditions of her favorite songs... loud renditions, and any silly thing that she can do to draw our attention that way. Tiffany and I have faired well too, mostly just glad to not be soo tired anymore and very ready to be able to take Abby back over to our friends house and such, back into the world. We love our house, but what joy it would be to sit on our other friends couches with our girls again. Sounds kind of funny but we definitely miss that interaction.
Other than above, things have been relatively "normal" in their own sort of way. We did take a little trip up the Big Thompson Canyon and then up towards Glen Haven to play near a smaller creek. The girls loved it! That is what the picture above is from, it was a great time, we'll have to do it again before the summer slips away.
Anyway, now that we are getting a bit more rested and normal around here, I'm starting to think a little bit more about how the whole DI experience effected us as a family. And all in all, I think we came out relatively unscathed. Medically, yes Abby did great! Anna, has gotten a little more demanding of our attention, expressed in very commanding renditions of her favorite songs... loud renditions, and any silly thing that she can do to draw our attention that way. Tiffany and I have faired well too, mostly just glad to not be soo tired anymore and very ready to be able to take Abby back over to our friends house and such, back into the world. We love our house, but what joy it would be to sit on our other friends couches with our girls again. Sounds kind of funny but we definitely miss that interaction.
Other than above, things have been relatively "normal" in their own sort of way. We did take a little trip up the Big Thompson Canyon and then up towards Glen Haven to play near a smaller creek. The girls loved it! That is what the picture above is from, it was a great time, we'll have to do it again before the summer slips away.
Thursday, August 11, 2005
Worn out but winding down
Worn out
You know I'm glad it is starting to get more normal around here but man, talk about being worn out by it all. I'm glad Abby doesn't have 2 Delayed Intensifications (DI) like a lot of kids do... for her sake and mine. Seriously I feel like I have been in a fog for the last few months, well, maybe more of a tunnel. We've just been so focused on all the Abby things to do and take care of plus just trying to continue to do life, which on a normal day with 2 little kids is probably challenging anyway. Then add on all the beginning of a school year job stuff and bam, we suddenly became a very crazy family. But, like I said, I think it is starting to wind down, and wind down to a more reasonable level for the long haul.
Let's recap. Abby is almost done with DI and has done very well in the side effects category with very few to mention. It looks like the 3 weeks of intense antibiotics and Vanco/Heparin locks in her Broviac tube took care of it. If she doesn't get anymore infections then we won't have to be in a hurry to take it out. Abby still has no, and I mean NO immunity protection, her total white blood cell count is still around 300 (normal kid = 15000 I think) and her ANC, immunity component of her total white count, is unreadable. She's only needed one transfusion so far of packed red blood cells and 1 of platelets. If she goes any lower on either though, they'll have to transfuse her again. Currently her red count is at 8.9, normal is around 15, and platelets are around 30,000, usually 150,000-200,000 is normal. So thing are looking up but she still is a bit "in the woods" you might say.
With her immunity gone, we don't get out much unless the place is really empty. Last night we went to the ice cream store, ordered and then went and sat outside. And this last weekend we went a little bit up the canyon, not too far up with so little hemoglobin (oxygen carrying red blood cells), and the girls got to get out and played by a little creek, that was a lot of fun. So, as you can see, things are getting much better.
Let me also fill you in on the future plans... DI finishes on the 23rd I believe. From there they let her counts all come back up for a week or more and then start her on the Long Term Maintenance (LTM). LTM will last, well a long term of time, a little under 2 years. I'll try to post the image of that road map, but basically it is a reoccurring rotation of nightly meds, monthly or maybe 6 in between spinal taps, some IV chemo and monthly or more blood work, plus check ups. Also in the beginning of this phase she will be getting her Broviac out and a Medoport put in. This device is also an access port but it hides under the skin and to access it she'll get one "oweee". We are still deciding what way we want to go with this issue. Finally, she will be getting a corrective surgery for her eye once her counts get high enough to do that. The nice thing about all of these surgeries is that if she doesn't have any blood infections she can have them done all at the same time, eye, Broviac out, Medoport in, while she is under general anesthesia.
So, that's the scoop.
You know I'm glad it is starting to get more normal around here but man, talk about being worn out by it all. I'm glad Abby doesn't have 2 Delayed Intensifications (DI) like a lot of kids do... for her sake and mine. Seriously I feel like I have been in a fog for the last few months, well, maybe more of a tunnel. We've just been so focused on all the Abby things to do and take care of plus just trying to continue to do life, which on a normal day with 2 little kids is probably challenging anyway. Then add on all the beginning of a school year job stuff and bam, we suddenly became a very crazy family. But, like I said, I think it is starting to wind down, and wind down to a more reasonable level for the long haul.
Let's recap. Abby is almost done with DI and has done very well in the side effects category with very few to mention. It looks like the 3 weeks of intense antibiotics and Vanco/Heparin locks in her Broviac tube took care of it. If she doesn't get anymore infections then we won't have to be in a hurry to take it out. Abby still has no, and I mean NO immunity protection, her total white blood cell count is still around 300 (normal kid = 15000 I think) and her ANC, immunity component of her total white count, is unreadable. She's only needed one transfusion so far of packed red blood cells and 1 of platelets. If she goes any lower on either though, they'll have to transfuse her again. Currently her red count is at 8.9, normal is around 15, and platelets are around 30,000, usually 150,000-200,000 is normal. So thing are looking up but she still is a bit "in the woods" you might say.
With her immunity gone, we don't get out much unless the place is really empty. Last night we went to the ice cream store, ordered and then went and sat outside. And this last weekend we went a little bit up the canyon, not too far up with so little hemoglobin (oxygen carrying red blood cells), and the girls got to get out and played by a little creek, that was a lot of fun. So, as you can see, things are getting much better.
Let me also fill you in on the future plans... DI finishes on the 23rd I believe. From there they let her counts all come back up for a week or more and then start her on the Long Term Maintenance (LTM). LTM will last, well a long term of time, a little under 2 years. I'll try to post the image of that road map, but basically it is a reoccurring rotation of nightly meds, monthly or maybe 6 in between spinal taps, some IV chemo and monthly or more blood work, plus check ups. Also in the beginning of this phase she will be getting her Broviac out and a Medoport put in. This device is also an access port but it hides under the skin and to access it she'll get one "oweee". We are still deciding what way we want to go with this issue. Finally, she will be getting a corrective surgery for her eye once her counts get high enough to do that. The nice thing about all of these surgeries is that if she doesn't have any blood infections she can have them done all at the same time, eye, Broviac out, Medoport in, while she is under general anesthesia.
So, that's the scoop.
Friday, August 05, 2005
No transfusion needed today
Just a quick note to let you all know that Abby went down to Denver today ready to get another blood transfusion and didn't have too. Her counts were high enough from the last transfusion on Tuesday so back home they come.
Anyway, she's doing really good and has been mostly back to her old self, laughing, playing, arguing with her little sis Anna, and just being plain old cute!
I'll try to post some pictures soon.
Anyway, she's doing really good and has been mostly back to her old self, laughing, playing, arguing with her little sis Anna, and just being plain old cute!
I'll try to post some pictures soon.
Tuesday, August 02, 2005
Blood Transfusion
Hey all,
Abby went down for her morning chemo appointment today and was sent over to the hospital to get some blood/platelets transfusions.
She should have just started getting the platelets and they'll take an hour to go in. Then she will have to wait a bit and then they will start the blood, packed red blood cells to be exact. The blood will take about 4 hours and then she can come home as long as she doesn't get a fever. When kids are neutropenic and get a fever they admit them for the night and often when kids get blood they will get a fever just from the transfusion process, so, she may stay overnight. We'll just have to wait and see.
Other than that she is doing fine, her counts are low obviously, but all in all she is doing really well with the treatment. She is also off Vancomyacin for now, just finished this morning. Hopefully she can stay off of the antibiotics because that is a lot of work and probably is not the best for her body. I'll post more as I know more, or maybe I'll just go to sleep instead. :)
Abby went down for her morning chemo appointment today and was sent over to the hospital to get some blood/platelets transfusions.
She should have just started getting the platelets and they'll take an hour to go in. Then she will have to wait a bit and then they will start the blood, packed red blood cells to be exact. The blood will take about 4 hours and then she can come home as long as she doesn't get a fever. When kids are neutropenic and get a fever they admit them for the night and often when kids get blood they will get a fever just from the transfusion process, so, she may stay overnight. We'll just have to wait and see.
Other than that she is doing fine, her counts are low obviously, but all in all she is doing really well with the treatment. She is also off Vancomyacin for now, just finished this morning. Hopefully she can stay off of the antibiotics because that is a lot of work and probably is not the best for her body. I'll post more as I know more, or maybe I'll just go to sleep instead. :)
Saturday, July 30, 2005
Reds are Meds.
So yes, this is a picture of our calander for this week. All the red things are Abby's meds... Crazy huh?! Abby's doing great with all though, I don't know if we could say that for Tifffany and I but we're doing OK. Here's the typical daliy schedule for a few more days and then we'll see if we have to keep up the antibiotics or not.
6am- hook up Abby to Vancomyacin
8am- unhook her, and put in a Vanco/Heprin lock (in her Broviac)
8am-Kytril (to counteract nausea)
8am after breakfast... Zantac
8am after breakfast... Mouthwash and Nystatin (to keep mouth sores at bay.)
12pm after lunch Mouthwash and Nystatin
2pm hook her up to Vanco again
4pm unhook her and give AraC
4pm lock her with Vanco/Heprin
6pm Zantac
6pm mouthwash/Nystatin
7-8pm give her 6-TG(hour after food, no milk, no citrus... they make it not work, milk, or super potent, citrus).
10pm Hook her up to Vanco
12am unhook her and lock her with Vanco/Heprin
I write that all for my memory as much as I do for your information. Lots to take in and do huh. But as I said, Abby is doing really well with all. She is playing much more with Anna, walking around pretty good, and is very giggly. She doesn't want to leave the house much but neither do we after 3 trips down to CHOA last week. They ended up putting her on a second Antibiotic on top of the Vanco for a couple days last week becuase she had a little fever and they wanted to make sure it wasn't the blood infection. She's had this blood infection for pushing 3 weeks now so they are really trying to knock it out for good. The crazy thing is that she might not have had any blood infection, it could all just be contaminates from handleing it but they don't want to take any chances, so they treat it and keep culturing the samples.
Other than that, there really isn't much to say. This is just our life now, and it's pretty demanding. But the high pace is offset by having my smilely little girl back and that is worth it all.
Off to drink more coffee.
6am- hook up Abby to Vancomyacin
8am- unhook her, and put in a Vanco/Heprin lock (in her Broviac)
8am-Kytril (to counteract nausea)
8am after breakfast... Zantac
8am after breakfast... Mouthwash and Nystatin (to keep mouth sores at bay.)
12pm after lunch Mouthwash and Nystatin
2pm hook her up to Vanco again
4pm unhook her and give AraC
4pm lock her with Vanco/Heprin
6pm Zantac
6pm mouthwash/Nystatin
7-8pm give her 6-TG(hour after food, no milk, no citrus... they make it not work, milk, or super potent, citrus).
10pm Hook her up to Vanco
12am unhook her and lock her with Vanco/Heprin
I write that all for my memory as much as I do for your information. Lots to take in and do huh. But as I said, Abby is doing really well with all. She is playing much more with Anna, walking around pretty good, and is very giggly. She doesn't want to leave the house much but neither do we after 3 trips down to CHOA last week. They ended up putting her on a second Antibiotic on top of the Vanco for a couple days last week becuase she had a little fever and they wanted to make sure it wasn't the blood infection. She's had this blood infection for pushing 3 weeks now so they are really trying to knock it out for good. The crazy thing is that she might not have had any blood infection, it could all just be contaminates from handleing it but they don't want to take any chances, so they treat it and keep culturing the samples.
Other than that, there really isn't much to say. This is just our life now, and it's pretty demanding. But the high pace is offset by having my smilely little girl back and that is worth it all.
Off to drink more coffee.
Tuesday, July 26, 2005
Starting DI, round 2
Hey all,
I took Abby down to the eye doc yesterday and we stopped by CHOA to get her blood counts. The machine said that she wouldn't pass, ANC 400, but when they did the manual count under the microscope she passed with a 748! Weird, I was sure that she wouldn't make it especially after they ran it on the machine and it came back with a 400. Anyway, she needed a 750 to start the 2nd part of Delayed Intensification (I put the roadmap here that should be big enough to read) so she will start today.
Today on the menu is: 1 Spinal tap with Mexthotrexate chemo, 1 dose of Cyclophosphomide, 1 dose of Ara-C, and 1 pill of 6-TG... to counter the side effects of these chemo drugs she will also get Kytril for nausea, Zantac for her stomach, and Nystatin & Perodex 3 times a day as a mouth rinse. They sure know how to load these kids up huh!? Well from here on out the mountain of meds should be substantially smaller.
Please be praying for no side effects on these drugs as some of them have pretty scary yet uncommon side effects such as making the patient sterile. Here is a good link for side effects of the common Leukemia drugs if you want more info.
As for the hair situation, yes it still is gone, just some rouge hairs left looking for company. Actually she has lots of peach fuzz. If you want to see what she looks like click here. It's amazing how quickly it all came out and yes we're still getting used to her new look. Once her cheeks go down a bit and she can smile with out her cheeks closing her eyes that will be better too. Not much to say about her eye from the doctor. He'll see her in 6 weeks and then we'll decide on surgery then, most likely they'll do a surgery.
We'll lots to do on day 29! Hope all is well with you.
I took Abby down to the eye doc yesterday and we stopped by CHOA to get her blood counts. The machine said that she wouldn't pass, ANC 400, but when they did the manual count under the microscope she passed with a 748! Weird, I was sure that she wouldn't make it especially after they ran it on the machine and it came back with a 400. Anyway, she needed a 750 to start the 2nd part of Delayed Intensification (I put the roadmap here that should be big enough to read) so she will start today.
Today on the menu is: 1 Spinal tap with Mexthotrexate chemo, 1 dose of Cyclophosphomide, 1 dose of Ara-C, and 1 pill of 6-TG... to counter the side effects of these chemo drugs she will also get Kytril for nausea, Zantac for her stomach, and Nystatin & Perodex 3 times a day as a mouth rinse. They sure know how to load these kids up huh!? Well from here on out the mountain of meds should be substantially smaller.
Please be praying for no side effects on these drugs as some of them have pretty scary yet uncommon side effects such as making the patient sterile. Here is a good link for side effects of the common Leukemia drugs if you want more info.
As for the hair situation, yes it still is gone, just some rouge hairs left looking for company. Actually she has lots of peach fuzz. If you want to see what she looks like click here. It's amazing how quickly it all came out and yes we're still getting used to her new look. Once her cheeks go down a bit and she can smile with out her cheeks closing her eyes that will be better too. Not much to say about her eye from the doctor. He'll see her in 6 weeks and then we'll decide on surgery then, most likely they'll do a surgery.
We'll lots to do on day 29! Hope all is well with you.
Sunday, July 24, 2005
Hair today, gone tomorrow
Well, actually that would have been a better title a couple days ago being that Tiffany finally cut off what was left of her hair yesterday morning.
I've know it was coming and during the last big round her hair definitely thinned out a bunch but I still wasn't looking forward to it or was I prepared for it all to just come out so fast. Basically it took about 24 hours for her to go from looking pretty normal in the hair department to real sparse. It just came out by the handful, the weirdest thing really, kind of made me nauseous, I don't know why, it just did. I didn't want Tiffany to cut it at first but by Saturday morning I decided that she would probably look better without the remaining hair since it was so spotty.
The first night that it came out she was just bald on the top with the mullet look in the back, she decided to dress up. She got this little skirt on, and some beads, put on a bikini top over her shirt and some clip-on ear rings. I was working downstairs when all of this was going on and when I came upstairs and saw her I couldn't help but laugh. She was all decked out as pretty as could be with her wispy hair just smiling with how beautiful she has made her self. I didn't tell her but all I could think in my head was that she looks like a bag lady... with Gollum's hair.
Actually it is great to see her all lit up and trying to be all beautiful, dressing up, playing, laughing and smiling more it really does offset the fact that her appearance has changed so dramatically. Those are the things that make me see my little Abby more. Past the chubby cheeks, the wandering eye, and her little bald head I really do see daughter more now and that is a great thing. It is amazing how Decadron can change not only Abby's appearance, but also her mood, emotions, and metal functions so much. Crazy stuff. Her face and belly will get more normal looking in the next couple months but she will still have quite the puffy, "moon face" as they call it through the term of her treatment since she'll be on Decadron for 5 days out of each month.
As for us, we're tired. Abby still isn't sleeping very well at night. Actually the last couple nights I found her sleeping on the floor our room or the guest room in the middle of the night. I don't quite know why but I think she is just sore and achy and is having a kind of Decadron withdraw since she wasn't weaned off of it like is often done with these drugs.
Well, speaking of tired, I'm gonna go take a nap. I'll post a puffy-faced-bald-headed picture for you all soon... you have been warned. :)
I've know it was coming and during the last big round her hair definitely thinned out a bunch but I still wasn't looking forward to it or was I prepared for it all to just come out so fast. Basically it took about 24 hours for her to go from looking pretty normal in the hair department to real sparse. It just came out by the handful, the weirdest thing really, kind of made me nauseous, I don't know why, it just did. I didn't want Tiffany to cut it at first but by Saturday morning I decided that she would probably look better without the remaining hair since it was so spotty.
The first night that it came out she was just bald on the top with the mullet look in the back, she decided to dress up. She got this little skirt on, and some beads, put on a bikini top over her shirt and some clip-on ear rings. I was working downstairs when all of this was going on and when I came upstairs and saw her I couldn't help but laugh. She was all decked out as pretty as could be with her wispy hair just smiling with how beautiful she has made her self. I didn't tell her but all I could think in my head was that she looks like a bag lady... with Gollum's hair.
Actually it is great to see her all lit up and trying to be all beautiful, dressing up, playing, laughing and smiling more it really does offset the fact that her appearance has changed so dramatically. Those are the things that make me see my little Abby more. Past the chubby cheeks, the wandering eye, and her little bald head I really do see daughter more now and that is a great thing. It is amazing how Decadron can change not only Abby's appearance, but also her mood, emotions, and metal functions so much. Crazy stuff. Her face and belly will get more normal looking in the next couple months but she will still have quite the puffy, "moon face" as they call it through the term of her treatment since she'll be on Decadron for 5 days out of each month.
As for us, we're tired. Abby still isn't sleeping very well at night. Actually the last couple nights I found her sleeping on the floor our room or the guest room in the middle of the night. I don't quite know why but I think she is just sore and achy and is having a kind of Decadron withdraw since she wasn't weaned off of it like is often done with these drugs.
Well, speaking of tired, I'm gonna go take a nap. I'll post a puffy-faced-bald-headed picture for you all soon... you have been warned. :)
Thursday, July 21, 2005
20,000 hits prize
Last week when I saw the total hit counter fast approaching 20,000 total hits I thought that I should do something special for the person that made the little hit counter hit 20,000. I-Tunes does it, the customer that downloads the 100,000 song or the 200,000 song, etc.. gets an i-Pod and a bunch of free music. I think the millionth song download is coming up and that person get a ton of stuff! Anyway, I don't make I-Pod's and there are no customers her at this site but still I thought I should do something... So what would I do? I thought all morning long, well for as long as I could concentrate on it anyway, at least a minute... I thought of a bunch of ideas: maybe give that person the last Decadron pill that we have left over, or maybe a chemo spill kit, or a loc of Abby's hair since it will all come out anyway. Those all seemed too weird, or sad, or just plain boring so I got another idea. Whoever hits on the 20,000 has to... I mean gets to give me a shoulder massage! Much better idea indeed.
So, I was all ready to implement this fabulous idea and post this message above when I decided to go look to see if there were any comments this morning. I opened up the site, clicked on the comment and BAM!.. Guess who was # 20,000?
Yup, me... So here I sit trying to type with one hand and give myself a lousy shoulder massage with the other. Oh well, it was a good idea. I'll just have to wait for #30,000.
So on the Abby front, she is much more pleasant today. The Decadron must be wearing off because she is much less hungry and a lot more playful/smiley. That is a great thing! Her hair has been falling out and today it started to come out in clumps so, probably by my next post I'll have a bald little girl... It's about time really, most kids loose it the first month or two so it is pretty amazing that she still has so much of it 7 months into the treatment. Still stinks that she has to lose it at all but I'm sure we'll get use to it in time. Otherwise things are relatively calm, especially in comparison to the last 3 weeks. We'll get more info on what to do about her lazy eye on Monday, most likely surgery, and we'll also see if her counts are good enough to start the next round of chemo on Tuesday.
That's about it... I've got to go and finish giving myself a back rub. :)
So, I was all ready to implement this fabulous idea and post this message above when I decided to go look to see if there were any comments this morning. I opened up the site, clicked on the comment and BAM!.. Guess who was # 20,000?
Yup, me... So here I sit trying to type with one hand and give myself a lousy shoulder massage with the other. Oh well, it was a good idea. I'll just have to wait for #30,000.
So on the Abby front, she is much more pleasant today. The Decadron must be wearing off because she is much less hungry and a lot more playful/smiley. That is a great thing! Her hair has been falling out and today it started to come out in clumps so, probably by my next post I'll have a bald little girl... It's about time really, most kids loose it the first month or two so it is pretty amazing that she still has so much of it 7 months into the treatment. Still stinks that she has to lose it at all but I'm sure we'll get use to it in time. Otherwise things are relatively calm, especially in comparison to the last 3 weeks. We'll get more info on what to do about her lazy eye on Monday, most likely surgery, and we'll also see if her counts are good enough to start the next round of chemo on Tuesday.
That's about it... I've got to go and finish giving myself a back rub. :)
Monday, July 18, 2005
My Chipmunk-Cheeked Girl
Hey all,
Here's a recent pic for you all. Ahh the wonders of steroidal drugs. Not just grumpy and hungry but "moon face" too. That's what they call it, the cubby cheeks and Buddha-belly, comes from water gain and salt retention... crazy stuff. Anyway, it will gradually go away and she will look more like her normal cheeked self. She'll still have a bit of the puffy cheeks through the course of the treatment since she will still be on this same steroid, Decadron, for 5 days each month.
Wanna hear the good news????
She is done taking the grumpy pill tomorrow evening! Yippee, day 21 is finally here! And if that wasn't enough good news, our doctor called today and told us that we can take her off the monster antibiotic, Vancomyacin, and switch her to another more narrow spectrum one that we only have to give her ONCE A DAY!!! Yippeeee!!! We have to give her the Vanco 3 times a day, every 8 hours and it takes 2 hours to infuse it via her broviac so.... guess how much consecutive sleep we get while doing that?... Ahhh... I see you all paid attention during that math class, yes, you are correct... 6 hours... minus the snacking and potty breaks of course:) Actually she has been doing good on that front too. Only really wakes us up maybe once a night or not at all. She still goes to the bathroom her self and the big bowl of cheerios seems to last her through the night. The only thing that I occasionally wake up to is the sound of loud crunching at 2am in the adjacent room:) I just chuckle and fall back to sleep.
See what else?... Still a challenging pace but we can see the light at the end of the tunnel. Tiffany's mom Vicky is leaving on Wednesday so we will miss the help but hopefully we are through the most demanding times. Hey Robin... Thanks for loaning us your wife for so long. It has been sooooo needed and very helpful! Dr. Smith said that they will probably pull the Broviac after we are done with DI, if she can make it through without a ton of infections. Abby's eye has been more crossed since the start of DI, probably since she is weaker and more tired but I'll have to ask the eye specialist why when we go next week. The tentative schedule for the eye is to do corrective surgery after DI is finished. So, looks like lots of surgeries in September and November... Oh well, one day at a time.
I think that is about it. Just taking it day by day. Some days, like yesterday and today, she does really, really well. And some days are a bit harder. She has a week off of chemo now so that will be a good thing for her, but also this is the danger zone and Dr. Smith told me not to be surprised if she gets admitted again in the next couple weeks. I
In general though she's doing great. She's been playing a little bit, mostly with her kitchen and food toys and watching a lot of videos... she really likes the Blues Clues Snack Time video! The only problem letting her watch is that she starts asking for everything that they make! I can't keep up with the video when they have something new every 5 minutes! :)
Well, there is the long and short of it. I'll have to write more later about how she makes these little noises when she eats... kind of reminds us of rain man... and how she pretty much mumbles constantly about everything and anything that is going on around her. All I have to say is Chemo is some pretty strange and often disturbing stuff!
Bye for now.
Here's a recent pic for you all. Ahh the wonders of steroidal drugs. Not just grumpy and hungry but "moon face" too. That's what they call it, the cubby cheeks and Buddha-belly, comes from water gain and salt retention... crazy stuff. Anyway, it will gradually go away and she will look more like her normal cheeked self. She'll still have a bit of the puffy cheeks through the course of the treatment since she will still be on this same steroid, Decadron, for 5 days each month.
Wanna hear the good news????
She is done taking the grumpy pill tomorrow evening! Yippee, day 21 is finally here! And if that wasn't enough good news, our doctor called today and told us that we can take her off the monster antibiotic, Vancomyacin, and switch her to another more narrow spectrum one that we only have to give her ONCE A DAY!!! Yippeeee!!! We have to give her the Vanco 3 times a day, every 8 hours and it takes 2 hours to infuse it via her broviac so.... guess how much consecutive sleep we get while doing that?... Ahhh... I see you all paid attention during that math class, yes, you are correct... 6 hours... minus the snacking and potty breaks of course:) Actually she has been doing good on that front too. Only really wakes us up maybe once a night or not at all. She still goes to the bathroom her self and the big bowl of cheerios seems to last her through the night. The only thing that I occasionally wake up to is the sound of loud crunching at 2am in the adjacent room:) I just chuckle and fall back to sleep.
See what else?... Still a challenging pace but we can see the light at the end of the tunnel. Tiffany's mom Vicky is leaving on Wednesday so we will miss the help but hopefully we are through the most demanding times. Hey Robin... Thanks for loaning us your wife for so long. It has been sooooo needed and very helpful! Dr. Smith said that they will probably pull the Broviac after we are done with DI, if she can make it through without a ton of infections. Abby's eye has been more crossed since the start of DI, probably since she is weaker and more tired but I'll have to ask the eye specialist why when we go next week. The tentative schedule for the eye is to do corrective surgery after DI is finished. So, looks like lots of surgeries in September and November... Oh well, one day at a time.
I think that is about it. Just taking it day by day. Some days, like yesterday and today, she does really, really well. And some days are a bit harder. She has a week off of chemo now so that will be a good thing for her, but also this is the danger zone and Dr. Smith told me not to be surprised if she gets admitted again in the next couple weeks. I
In general though she's doing great. She's been playing a little bit, mostly with her kitchen and food toys and watching a lot of videos... she really likes the Blues Clues Snack Time video! The only problem letting her watch is that she starts asking for everything that they make! I can't keep up with the video when they have something new every 5 minutes! :)
Well, there is the long and short of it. I'll have to write more later about how she makes these little noises when she eats... kind of reminds us of rain man... and how she pretty much mumbles constantly about everything and anything that is going on around her. All I have to say is Chemo is some pretty strange and often disturbing stuff!
Bye for now.
Saturday, July 16, 2005
Back from the Hospital
Just a quick note to let you all know that Abby was discharged yesterday about 4pm and is doing good at home.
She is on Vancomyacin and is still very hungry but all in all she is doing fine. Her face is getting very puffy again from the steroid drugs but we are done with those on Tuesday!!! Yippee!!
I'll write more as I have time.
She is on Vancomyacin and is still very hungry but all in all she is doing fine. Her face is getting very puffy again from the steroid drugs but we are done with those on Tuesday!!! Yippee!!
I'll write more as I have time.
Wednesday, July 13, 2005
One of the 70%...
So Abby is now one of the 70% that gets admitted to the hospital during DI. Tiffany just took her down today after they did a blood culture when Abby was down for her chemo yesterday. They have Abby on antibiotics again and from what I've heard they are checking to see if this is the same bacteria infection that she has had before. If so then they may have to do surgery to remove her Broviac line encase it is laying dormant in the line.
So, that's all I have right now. I'll try to post as I have time and access to the Internet. Please be praying for her infection to clear up and for her not to have to get her line removed.
Thanks!
So, that's all I have right now. I'll try to post as I have time and access to the Internet. Please be praying for her infection to clear up and for her not to have to get her line removed.
Thanks!
Monday, July 11, 2005
Ravenously Hungry
I'm still in California for the TEAM conferance with the Youth Leadership Institute at APU but I wanted to give a little update as to how things are going on the Abby front.
Abby is still relatively healthy, grumpy and hungry but healthy. Actually VERY hungry in the last 2 days. The request for food has grown and now is even at night. Being a very independent little 3 year old, Abby decided to solve her own problem of hunger the other night. Late into the night and early in the morning she was found roaming around the kitchen and helping her self to different food items in the pantry. Since that wasn't exactly what we wanted to be the norm in our house and since it was an exhausting hight Tiffany decided to put up the baby gate last night and provide snacks in a basket for Abby to eat through the night.... That worked to a point, but the basket still had to be refilled a couple times during the night with snacks.
Now, Abby is a good little girl that has been to taught to share as any child would be at her age. And she is getting pretty good at it too. For instance, last night Abby decided to share her snacks with Anna. Makes sense you know, sharing is a good thing. So..... Tiffany and Vicky found Anna in the crib this morning with various snacks strewn about. Popcorn, rice crispies, and chocolate cookies were probably a lovely breakfast for Anna but probably also a pain to clean up out of her crib.
So, be praying for energy for my wife and mother-in-law while I'm gone. Pray that Abby won't eat us into the poor house, and that she continues to to well with the chemo effects.
Abby's 3rd chemo week is coming up on Tuesday and for the next couple weeks she will be, as our doctor says, "in the danger zone" for this phase. The point when 60-70% if kids are admitted to the hospital. Please be praying that she will be one of the 30-40% that does not have to go in.
Thank you once again for all of your comments, prayers and encouragement!
Abby is still relatively healthy, grumpy and hungry but healthy. Actually VERY hungry in the last 2 days. The request for food has grown and now is even at night. Being a very independent little 3 year old, Abby decided to solve her own problem of hunger the other night. Late into the night and early in the morning she was found roaming around the kitchen and helping her self to different food items in the pantry. Since that wasn't exactly what we wanted to be the norm in our house and since it was an exhausting hight Tiffany decided to put up the baby gate last night and provide snacks in a basket for Abby to eat through the night.... That worked to a point, but the basket still had to be refilled a couple times during the night with snacks.
Now, Abby is a good little girl that has been to taught to share as any child would be at her age. And she is getting pretty good at it too. For instance, last night Abby decided to share her snacks with Anna. Makes sense you know, sharing is a good thing. So..... Tiffany and Vicky found Anna in the crib this morning with various snacks strewn about. Popcorn, rice crispies, and chocolate cookies were probably a lovely breakfast for Anna but probably also a pain to clean up out of her crib.
So, be praying for energy for my wife and mother-in-law while I'm gone. Pray that Abby won't eat us into the poor house, and that she continues to to well with the chemo effects.
Abby's 3rd chemo week is coming up on Tuesday and for the next couple weeks she will be, as our doctor says, "in the danger zone" for this phase. The point when 60-70% if kids are admitted to the hospital. Please be praying that she will be one of the 30-40% that does not have to go in.
Thank you once again for all of your comments, prayers and encouragement!
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