Is there really chemo in that there bag, or is it just saline?
After week one of her treatment, you wouldn't even know that she was on any kind of chemo. We still have another week here to go... just the infusion this week... but we will see the next time they draw labs to see what the full effect of one complete treatment will do to her counts. I suspect that as this goes on, it will take a more accumulative effect, but for now, her counts look pretty good... that is to say good for someone on chemo. I plan on posting (as we get them) her most recent counts again on her page like the last time.
We met with a couple members of the stem cell team today to discuss how to proceed to harvest her cells, or at the very least give us the best chance to harvest her cells.
We have a plan A, a plan B and ugg... a plan C. Let's just say if'n you're into prayering, pray that A works and that there will be no need for B or C... we are, cuz as we move closer to the end of the alphabet, it gets a little uglier, more invasive and has an added pain/recovery factor.
Not much of anything else to tell really, it's so far so good. We won't know to what degree the chemo is working until we have scans done.
That's it from here for now, until the next update...
KEIYTAP
30 March, 2009
23 March, 2009
Back On The Treadmill...
or roller coaster/train.
Oh, it started out innocently enough... all smiles and how are you, bla, bla, bla. Then it's down to business and Emmah had to take the oral portion. All I can say is thank God for yogurt as it's the only way Emmah can take a pill. She took the pills and we had to wait for an hour before getting
the mini bag of the other agent... all the while she was playing her DS and all smiles and wanting to eat some pretzels.
I said that she could have a few and placed three on her book before going off to make our next appointment. I came back to see her bag in hand helping herself. I suggested that she might want to wait on eating any more... I got poo pooed as she made a face.
Sadly, it's all aboard the chemo express, the effects of it being felt on our ride home.
...and beyond.
About 20 minutes into the ride home, she was hugging the pink tub and watching the not so few pretzels making a reappearance. We'll see how this goes, as it seems like things might have calmed down for now.
KEITYAP
Oh, it started out innocently enough... all smiles and how are you, bla, bla, bla. Then it's down to business and Emmah had to take the oral portion. All I can say is thank God for yogurt as it's the only way Emmah can take a pill. She took the pills and we had to wait for an hour before getting
the mini bag of the other agent... all the while she was playing her DS and all smiles and wanting to eat some pretzels.I said that she could have a few and placed three on her book before going off to make our next appointment. I came back to see her bag in hand helping herself. I suggested that she might want to wait on eating any more... I got poo pooed as she made a face.
Sadly, it's all aboard the chemo express, the effects of it being felt on our ride home.
...and beyond.About 20 minutes into the ride home, she was hugging the pink tub and watching the not so few pretzels making a reappearance. We'll see how this goes, as it seems like things might have calmed down for now.
KEITYAP
22 March, 2009
Spring Is In The Air...
So what better thing to do on a beautiful spring day than... um... take down the Christmas tree?
That's right everyone, we spent the second day of spring taking down our Christmas tree. Other than it being up this late in the year (and for the record, this is THE latest it's been up) it was ahh... shall we say a tad dry. Dry and weepy... the branches were sagging like a senior home on bath day.
So keeping with our recently set tradition, we cut it up for burning... semi out of guilt for cutting it down. This way, it can bring pleasure all through out the year... the pine branches burn like crazy and make for a good fire starter. We are burning last years tree right now. Needless to say, the needles were everywhere... our floor was green... and the back hall was only flecked in green.
Today was the big flower bed/gardens clean up... 11 lawn and leaf bags later and we called it a day and not a moment too soon for all my helpers.
And lastly...
Emmah starts her chemo tomorrow... pray that it works and pray that it doesn't hit her too hard.
KEIYTAP
That's right everyone, we spent the second day of spring taking down our Christmas tree. Other than it being up this late in the year (and for the record, this is THE latest it's been up) it was ahh... shall we say a tad dry. Dry and weepy... the branches were sagging like a senior home on bath day.
So keeping with our recently set tradition, we cut it up for burning... semi out of guilt for cutting it down. This way, it can bring pleasure all through out the year... the pine branches burn like crazy and make for a good fire starter. We are burning last years tree right now. Needless to say, the needles were everywhere... our floor was green... and the back hall was only flecked in green.
Today was the big flower bed/gardens clean up... 11 lawn and leaf bags later and we called it a day and not a moment too soon for all my helpers.
And lastly...
Emmah starts her chemo tomorrow... pray that it works and pray that it doesn't hit her too hard.
KEIYTAP
19 March, 2009
Miss Nurse...
How many pokes does it take to get to the center of my power port?
I don't know, let's ask Mr. Owl...
Mr. Owl, how many pokes does it take to get to the center of my power port?
Let's find out.
One...
Two...
Three...
Four...
Four!
Yup, poor Emmah had to get poked four times before a successful sticking. Four separate nurses, four separate attempts before finally achieving success.
A two and a half to three hour consultation visit became an agonizing six hour ordeal. After the consult they wanted to draw labs on Emmah and so needed to access her port to get a blood draw. What started at around 12:40 (the poking) didn't end until we were walking out to the parking garage a little after 4pm.
Aside from all the pain (Emmah) and suffering (we... and Emmah) were going through as they used Emmah as a pin cushion, we were feeling the need to have someone... ANYONE... there be able to access her. I mean if we were going to be going here for continued treatment we needed some sense of security that they'd be able to access her and not have her get stuck multiple times... every time.
For the record... a regular successful access and draw from start to finish... 10 minutes tops.
After the third one, she (understandably so) was ready to go home, but there was a slight problem. The first nurse even though not properly accessed drew back and we think removed the heparin from her port. Heparin is something that is added to the port when it's not going to be accessed/used for a while... it's a anti-clotting agent. So now she was without and we felt it best to have a successful access so it could be put back in. What followed was difficult to sit and be witness to.
After the third attempt we decided that since it was well after lunch (and we hadn't eaten anything since leaving the house at 9) we thought it best to take a break and go get a snack. Before going, the Child Life person offered up a bribe of sorts. She said that since Emmah's been stuck three times, she could take three gift cards out of the basket... and if she allowed a 4th attempt, she could pick one more... one for every poke. So away we went to snack and talk and Emmah decided to let them have one last... ahem... stab at it.
So the fourth time was the charm (thanks to Kelly) and Emmah walked off with a total of $20.00 in gift cards... a small token for the suffering, but a nice thing nonetheless. She chose two from Target and two from Best Buy.
In spite of the sticking... we've decided to let them (Comer Children's Hospital... University of Chicago) have a go, just feeling like they are a research center and a much larger institution with much more at their disposal... and most importantly a Neuroblastoma specialist. We'll be able to do things here (if need be) that aren't available at Hope, or even Children's.
We've decided on a medium dose chemo (which we will be starting on Monday) that is supposed to be well tolerated and won't/shouldn't interfere with quality of life so much. We will be going in for the first one, but it is done out-patient and going forward we will have a home health care nurse administer it. One agent is oral and the other is through IV. I believe it (the schedule) goes something like five days on, two off, then another five days... then one week off then start the cycle again. That of course is if it's well tolerated by Emmah. There are other things, but I won't bore you with the details of it.
As a side note... because of the extra time it took to get her accessed, we ended up going over the meter at the garage. Up to 3 hours was going to be only $6 with validation... 3-6 was $11, and over 6 was $16... 22 minutes cost us an extra $5 as we were 6h 22m. We were thinking that when we went in $6, and it ended up costing us $16. It's just the principle of the whole thing... and the extra $$$$$.
KEIYTAP
I don't know, let's ask Mr. Owl...
Mr. Owl, how many pokes does it take to get to the center of my power port?
Let's find out.
One...
Two...
Three...
Four...
Four!
Yup, poor Emmah had to get poked four times before a successful sticking. Four separate nurses, four separate attempts before finally achieving success.
A two and a half to three hour consultation visit became an agonizing six hour ordeal. After the consult they wanted to draw labs on Emmah and so needed to access her port to get a blood draw. What started at around 12:40 (the poking) didn't end until we were walking out to the parking garage a little after 4pm.
Aside from all the pain (Emmah) and suffering (we... and Emmah) were going through as they used Emmah as a pin cushion, we were feeling the need to have someone... ANYONE... there be able to access her. I mean if we were going to be going here for continued treatment we needed some sense of security that they'd be able to access her and not have her get stuck multiple times... every time.
For the record... a regular successful access and draw from start to finish... 10 minutes tops.
After the third one, she (understandably so) was ready to go home, but there was a slight problem. The first nurse even though not properly accessed drew back and we think removed the heparin from her port. Heparin is something that is added to the port when it's not going to be accessed/used for a while... it's a anti-clotting agent. So now she was without and we felt it best to have a successful access so it could be put back in. What followed was difficult to sit and be witness to.
After the third attempt we decided that since it was well after lunch (and we hadn't eaten anything since leaving the house at 9) we thought it best to take a break and go get a snack. Before going, the Child Life person offered up a bribe of sorts. She said that since Emmah's been stuck three times, she could take three gift cards out of the basket... and if she allowed a 4th attempt, she could pick one more... one for every poke. So away we went to snack and talk and Emmah decided to let them have one last... ahem... stab at it.
So the fourth time was the charm (thanks to Kelly) and Emmah walked off with a total of $20.00 in gift cards... a small token for the suffering, but a nice thing nonetheless. She chose two from Target and two from Best Buy.
In spite of the sticking... we've decided to let them (Comer Children's Hospital... University of Chicago) have a go, just feeling like they are a research center and a much larger institution with much more at their disposal... and most importantly a Neuroblastoma specialist. We'll be able to do things here (if need be) that aren't available at Hope, or even Children's.
We've decided on a medium dose chemo (which we will be starting on Monday) that is supposed to be well tolerated and won't/shouldn't interfere with quality of life so much. We will be going in for the first one, but it is done out-patient and going forward we will have a home health care nurse administer it. One agent is oral and the other is through IV. I believe it (the schedule) goes something like five days on, two off, then another five days... then one week off then start the cycle again. That of course is if it's well tolerated by Emmah. There are other things, but I won't bore you with the details of it.
As a side note... because of the extra time it took to get her accessed, we ended up going over the meter at the garage. Up to 3 hours was going to be only $6 with validation... 3-6 was $11, and over 6 was $16... 22 minutes cost us an extra $5 as we were 6h 22m. We were thinking that when we went in $6, and it ended up costing us $16. It's just the principle of the whole thing... and the extra $$$$$.
KEIYTAP
11 March, 2009
10 March, 2009
Emmah... A Pre-Teen No Longer
So... it has come to pass, the time has arrived... you are no longer a pre-teen, but one of those dang teenagers that are taking over the world with all their OMG, ROFL or LMAO and so on and so on.
I suspect that type of shorthand is here to stay since if I go to dictionary.com, it gives me a definition for each one. This is where I pull out my walker and say back in the day, the only one we used (and not so much either) was TTFN... of course, that's used today too.
Teenage years are special, these will be the best and "worst" years all wrapped into a 7 year set. You discover who you are... and then when you hit 30 realize you didn't know jack. It's hard to imagine you being a teenager, but it's harder still to imagine how old that makes me and how old I will be when Ana reaches teenagerhood... 55 if my math is right... oy vey!
You've grown into a fine young lady... at times wise beyond your years (your mother and I would like to think that we've had a hand in that, but know too that it has every bit to do with you) and other times every bit your age... sometimes less ;) (that's all you by the way) Nonetheless, you've handled your cancer with dignity and courage and I've born witness to you going to hell and back and back to hell... and we'll get back this time too!
Turning 13 is a milestone birthday indeed to go along with the other milestone birthdays... your 1st, your 10th, 13th, 16th, 18th, 19th (last as a teenager), 20th (first as a non-teenager again), 21st (we won't talk about THAT one), 25th, 30th, 40th, 50th, 60th, 65th, 70th and then everyone after that. With any luck at all... 100.
I'm proud to be your father...
HAPPY 13th BIRTHDAY EMMAH!!!
I suspect that type of shorthand is here to stay since if I go to dictionary.com, it gives me a definition for each one. This is where I pull out my walker and say back in the day, the only one we used (and not so much either) was TTFN... of course, that's used today too.
Teenage years are special, these will be the best and "worst" years all wrapped into a 7 year set. You discover who you are... and then when you hit 30 realize you didn't know jack. It's hard to imagine you being a teenager, but it's harder still to imagine how old that makes me and how old I will be when Ana reaches teenagerhood... 55 if my math is right... oy vey!
You've grown into a fine young lady... at times wise beyond your years (your mother and I would like to think that we've had a hand in that, but know too that it has every bit to do with you) and other times every bit your age... sometimes less ;) (that's all you by the way) Nonetheless, you've handled your cancer with dignity and courage and I've born witness to you going to hell and back and back to hell... and we'll get back this time too!
Turning 13 is a milestone birthday indeed to go along with the other milestone birthdays... your 1st, your 10th, 13th, 16th, 18th, 19th (last as a teenager), 20th (first as a non-teenager again), 21st (we won't talk about THAT one), 25th, 30th, 40th, 50th, 60th, 65th, 70th and then everyone after that. With any luck at all... 100.
I'm proud to be your father...
HAPPY 13th BIRTHDAY EMMAH!!!
06 March, 2009
The Results Are In...
Of course when we were forced to head down this path again, we were hoping against all odds that Emmah's diagnosis wasn't going to come back as a recurrence of Neuroblastoma... it did. So that was the bad news... very bad news indeed.
So that left us with the hope that is hadn't pervaded her body, or at the very least not too much anyway. Waiting on the results of the remaining marrow pathology report and pending scan results became an exercise in torture endurance.
So, now on to the good news thus far... gotta look for that silver lining.
As mentioned in a previous episode, the bone scan came back negative but we still didn't have the full pathology report on the marrow. We do now... negative! So the only lingering/remaining thing was the MIBG. Well, it appears that the only sign of any activity is in/near the area of where this tumor was resected.
Bone negative!
Marrow negative!
MIBG showed some residual disease activity, but only at the tumor site.
These results were just about the best we could've hoped for (best would have been that the MIBG showed nothing at all) in the face of our current situation.
I don't know if it means anything (or not) that it was isolated again, but I do know that weeding a garden is much easier to do when there are less weeds to pull. So we will finish gathering information and then it's on to see the specialist on the 18th... until that time I don't suspect that there will be much more information for us to put out here.
Until we have more...
Keep on KEIYTAP
So that left us with the hope that is hadn't pervaded her body, or at the very least not too much anyway. Waiting on the results of the remaining marrow pathology report and pending scan results became an exercise in torture endurance.
So, now on to the good news thus far... gotta look for that silver lining.
As mentioned in a previous episode, the bone scan came back negative but we still didn't have the full pathology report on the marrow. We do now... negative! So the only lingering/remaining thing was the MIBG. Well, it appears that the only sign of any activity is in/near the area of where this tumor was resected.
Bone negative!
Marrow negative!
MIBG showed some residual disease activity, but only at the tumor site.
These results were just about the best we could've hoped for (best would have been that the MIBG showed nothing at all) in the face of our current situation.
I don't know if it means anything (or not) that it was isolated again, but I do know that weeding a garden is much easier to do when there are less weeds to pull. So we will finish gathering information and then it's on to see the specialist on the 18th... until that time I don't suspect that there will be much more information for us to put out here.
Until we have more...
Keep on KEIYTAP
02 March, 2009
Home Is Where The Kids (and incidentally the noises) Are
So we are in fact home arriving last evening around 6-ish or so. As mentioned by Julie, we still have to have an additional scan to find out the full involvement here... the MIBG scans for soft tissue activity... so lets hope for a very dim/dark scan. As also mentioned by Julie, the bone scan is clean, and very preliminary results (though we are still waiting on the full pathology report) on her bone marrow is that it's clean too... but they still have more tests to run to confirm.
By the end of the week, we should have all the "knowns" about how involved it is in Emmah... what we won't have yet is the direction we want to take. We plan on talking to a Neuroblastoma specialist once we've gathered all the information and see what doors will be available to be opened. Then comes potentially the most difficult decision of all... which door TO open.
Just wanted to mention that we ARE home now.
Until we have more information to share and as always...
PKEIYTAP
By the end of the week, we should have all the "knowns" about how involved it is in Emmah... what we won't have yet is the direction we want to take. We plan on talking to a Neuroblastoma specialist once we've gathered all the information and see what doors will be available to be opened. Then comes potentially the most difficult decision of all... which door TO open.
Just wanted to mention that we ARE home now.
Until we have more information to share and as always...
PKEIYTAP
01 March, 2009
The Best News We've Had in a While
Bone Scan: Negative
Bone Marrow Aspirate: Still waiting, but hopeful
Also, there is still talk of Emmah being discharged today. Tune in tomorrow to find out.
Bone Marrow Aspirate: Still waiting, but hopeful
Also, there is still talk of Emmah being discharged today. Tune in tomorrow to find out.
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