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  #1  
October 30th, 2006, 10:22 AM
TGunn8232's Avatar Mega Super Mommy
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Kaylie gets a bone marrow test done weekly to see what is going on in there. The tests have been clear of leukemia cells for 4 weeks now. Does this mean she is in remission? I asked a nurse and she told me that if they found more cells now that they would consider that a relapse. I always forget to ask the doctor when he comes in because I always have a billion other questions for him.
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  #2  
October 30th, 2006, 11:37 AM
feather's Avatar Platinum Supermommy
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I am unsure but you should definetly write a list to ask the doctor when you see him/her again.
I know I was the same way with forgetting to ask stuff...it seems there is always something going on, transfusions, new drugs, scans, that make you forget.
I was given a little red binder and I took it to all her appts./hospitalizations and had all her info and my questions written into it.
I certainly hope her results come back clear of cancerous cells from now on!
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  #3  
October 30th, 2006, 11:58 AM
TGunn8232's Avatar Mega Super Mommy
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I was going to ask when the doctor made rounds today, but I ran down to the kitchen real quick (I was gone for a minute) and missed him! My mom was with Kaylie and she forgot to ask!

I have a notebook they gave me with all of that stuff in it. It's so hard to keep up with everything even with having it. It seems like they are constantly handing me sheets of paper!
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  #4  
October 30th, 2006, 02:38 PM
feather's Avatar Platinum Supermommy
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I know what you mean, I really feel for you and Kaylie and your family. You said your mom was there so you must have a support system? That is a big help in itself. Maybe she can help with the burden of info?
I had no help whatsoever and I know just having a sounding board would have been a huge relief for me then.
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  #5  
October 30th, 2006, 03:01 PM
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I know that for me to keep all Gavin's appointments straight I got a planner and I keep everything in it!
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  #6  
October 30th, 2006, 04:38 PM
TGunn8232's Avatar Mega Super Mommy
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Quote:
I know what you mean, I really feel for you and Kaylie and your family. You said your mom was there so you must have a support system? That is a big help in itself. Maybe she can help with the burden of info?
I had no help whatsoever and I know just having a sounding board would have been a huge relief for me then.[/b]
Yes, my mom stays here 24/7 with us, which is such a big help. I can't imagine having to do this alone. How did you make it through it?

I'm going to buy a seperate notebook to write questions in and keep appointments straight (if we ever leave this hospital so I will have to remember appointments!!!) That way I can keep all the medical stuff in a binder and all of my personal stuff somewhere else.
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  #7  
November 1st, 2006, 04:24 AM
feather's Avatar Platinum Supermommy
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Quote:
can't imagine having to do this alone. How did you make it through it?[/b]
I did not come from the most loving and stable environment so I learned early on to watch out for myself. It was hard though and there were certainly times I wished I had someone with me but we got through it fine.
I know what you mean about seeming to never leave the hospital..if we weren't there for treatments or surgeries, we were there for line replacement surgeries or infections which lands you there for an automatic 10 days. Just as we got home it seemed she would pitch a fever again and back we went.
How is your little one feeling today? I hope she is on the steady incline to feeling better.
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  #8  
November 1st, 2006, 06:07 AM
TGunn8232's Avatar Mega Super Mommy
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Quote:
<div class='quotetop'>QUOTE
Quote:
can't imagine having to do this alone. How did you make it through it?[/b]
I did not come from the most loving and stable environment so I learned early on to watch out for myself. It was hard though and there were certainly times I wished I had someone with me but we got through it fine.
I know what you mean about seeming to never leave the hospital..if we weren't there for treatments or surgeries, we were there for line replacement surgeries or infections which lands you there for an automatic 10 days. Just as we got home it seemed she would pitch a fever again and back we went.
How is your little one feeling today? I hope she is on the steady incline to feeling better.
[/b][/quote]

Kaylie has been hospitalized since September 20 with the exception of 2 days she got to go home. I miss my home! But I've accepted the fact that we will be living in this hospital for the next year, so I may as well make the most of it. Kaylie loves it here because there are constantly people coming in to talk to her. She really loves the nurses and doctors, which helps a lot. Ok...I'm getting off the subject. Kaylie is MUCH better today. She started eating again and she kept her medicine down. It's been 16 hours since she threw up, so things are looking good. Her dr is planning on discharging her for the weekend again. And then she gets to come back and do this all over again! They say that once she gets out of the intensification stage, things will slow down and we will be home more. But I've learned not to always believe what they say because it usually changes.
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  #9  
November 1st, 2006, 11:08 AM
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Hey there! Thanks for sending me to this board and I hope you got the answer to your remission question, but if not, here's how it was explained to us.

Peyton was getting bone marrows and spinal taps every week through induction and consolidation. They explained that they set a benchmark of how many cells overall they count and if within that count there are no blasts then it's considered remission. However, if they were to do a larger count of more cells, they would find blasts. The benchmarks change throughout treatment and eventually, they WILL be gone!

So, when people ask me if she's in remission, I tell them yes, and that she's exactly where they want her to be. Peyton was an average responder, so she hit her remission mark for induction and we were excited because we thought that it meant it was all gone. After clarification we felt let down, but positive because her body's doing the best it can.

Hope that helped somewhat. I learned to take a small tape recorder with me in my purse these days, and if a question pops up, I record it so that I don't forget where I wrote it down or exactly what it was I was thinking of (sometimes I forget what my shorthand stood for).

F.R.O.G.
Anissa Mayhew
Peyton's Hope Page

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  #10  
November 1st, 2006, 11:31 AM
TGunn8232's Avatar Mega Super Mommy
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I'm so glad you decided to join us here! And thanks for explaining that. So, the weekly bone marrow and spinal taps will slow down eventually? I keep wondering how many holes they poke in her little back!
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  #11  
November 1st, 2006, 03:09 PM
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Quote:
I'm so glad you decided to join us here! And thanks for explaining that. So, the weekly bone marrow and spinal taps will slow down eventually? I keep wondering how many holes they poke in her little back![/b]

We actually had spinal taps so frequently, and the chemo was dehydrating her, that had to poke her 3 different times to find a spot that would give a few drops of fluid. We learned that when she got dried up to give her IV fluids for about 20-30 minutes before her spinal and she did much better.
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