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 ;)
Friday, September 23, 2005
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.
Subscribe to:
Posts (Atom)