Two quick things to celebrate this weekend.
1) Manda's numbers are back up in a safe range which means she got to play with her cousins this weekend AND she can start chemo on Monday.
2) The latest AFP (the cancer marker in her blood) is 11.6!!! Normal is 8 or less. We're getting closer!
Mere :0)
www.mandameow.blogspot.com
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Sunday, November 30, 2008
Monday, November 24, 2008
Chemo-A-No-Go
After being in quarantine all weekend Amanda developed a good case of Cabin
Fever. She is hyper. Running, jumping, swinging, climbing and getting into
trouble...on purpose. She is unhappy and letting us know it. The numbers
today were better than Thursday but not good enough to start chemo today.
Her ANC is back up to above quarantine levels so she should be able to
safely mix and mingle with family for the Thanksgiving Holiday. However,
her white blood cell count and platelets are still a bit on the low side.
She will get another shot of Neupogen on Wednesday night and we will check
her counts again on Friday morning. That should be able to tell us if we
can start the chemo next week Monday. This of course will push back the
entire schedule and land us in the hospital for her inpatient chemo the week
after Christmas. The exact week I was trying to avoid. But, we do what we
have to do, don't we? So, between Daddy and Grammy and me we will get
through the week and I will get to the office and she will once again be
just fine. (Daddy may need a little extra encouragement as the last time he
was left alone with her in the hospital she managed to step on her IV tube
and de-access herself, but he's a big boy. He'll be Ok.) They drew blood to
check the AFP (cancer marker in the blood) but we have not heard back from
the lab on that one yet.
Fever. She is hyper. Running, jumping, swinging, climbing and getting into
trouble...on purpose. She is unhappy and letting us know it. The numbers
today were better than Thursday but not good enough to start chemo today.
Her ANC is back up to above quarantine levels so she should be able to
safely mix and mingle with family for the Thanksgiving Holiday. However,
her white blood cell count and platelets are still a bit on the low side.
She will get another shot of Neupogen on Wednesday night and we will check
her counts again on Friday morning. That should be able to tell us if we
can start the chemo next week Monday. This of course will push back the
entire schedule and land us in the hospital for her inpatient chemo the week
after Christmas. The exact week I was trying to avoid. But, we do what we
have to do, don't we? So, between Daddy and Grammy and me we will get
through the week and I will get to the office and she will once again be
just fine. (Daddy may need a little extra encouragement as the last time he
was left alone with her in the hospital she managed to step on her IV tube
and de-access herself, but he's a big boy. He'll be Ok.) They drew blood to
check the AFP (cancer marker in the blood) but we have not heard back from
the lab on that one yet.
Speaking of Daddy. We are celebrating our 8th wedding anniversary tomorrow.
The first five years seem to all blur together with bits and pieces sticking
out here and there. The last three years? Holy Cow, what a ride! I give
him the credit for my own sanity. He keeps me grounded, keeps things in
perspective, keeps me laughing and goes the extra mile to make life easier
for me. I wouldn't trade him, or our life together with all of its ups and
downs, for anything. I honestly am thankful for my life and the amazing
people in it.
Happy Thanksgiving!
Mere :0)
Thursday, November 20, 2008
Well Crap!
Today's visit to the clinic was suppossed to reassure us that her numbers were on the upward trend and we would be full steam ahead for chemo to start on Monday. You know there is a "but'' coming don't you? Yeah.
So her hemoglobin and platelets were so low they gave her a transfusion. They also said she should continue getting the neupogen shots everyday in hopes that her numbers will go bacK up. Sounds great in theory except we used our last shot last night and the pharmacy did not get the order from the clinic before they closed today. They could not fill the Rx and we now have no shot to administer. The after-hours-on-call-doctor sent over the order and the shots should be delivered first thing in the morning. He will check with our oncologist to see if we should give her two shots tomorrow to catch up after missing her dose tonight. She will be in quarantine until we get her numbers back on Monday. They want her ANC to be above 1000. Amanda's today was 198. Just scary low. Keep those germs away! Oh yeah, and if her numbers don't go up dramatically they will postpone the chemo until her body is better able to handle it. This could set us back an entire week, which would then set her inpatient chemo back a week and wind us in the hospital exactly when I was trying to avoid it. *sigh* Hope for the best and deal with things as they come I guess.
Now, because I always look for the silver lining, I shall leave you with the two positive things from our evening together. #1) Since there was no shot to give, we were able to yell, ''no pokes!" when it was time for jammies. #2) I read her a story about the bear who stays up for Christmas, and when I pointed out Santa Clause she started singing Jingle Bells! I didn't even know she knew that song!
Mere :0)
www.mandameow.blogspot.com
So her hemoglobin and platelets were so low they gave her a transfusion. They also said she should continue getting the neupogen shots everyday in hopes that her numbers will go bacK up. Sounds great in theory except we used our last shot last night and the pharmacy did not get the order from the clinic before they closed today. They could not fill the Rx and we now have no shot to administer. The after-hours-on-call-doctor sent over the order and the shots should be delivered first thing in the morning. He will check with our oncologist to see if we should give her two shots tomorrow to catch up after missing her dose tonight. She will be in quarantine until we get her numbers back on Monday. They want her ANC to be above 1000. Amanda's today was 198. Just scary low. Keep those germs away! Oh yeah, and if her numbers don't go up dramatically they will postpone the chemo until her body is better able to handle it. This could set us back an entire week, which would then set her inpatient chemo back a week and wind us in the hospital exactly when I was trying to avoid it. *sigh* Hope for the best and deal with things as they come I guess.
Now, because I always look for the silver lining, I shall leave you with the two positive things from our evening together. #1) Since there was no shot to give, we were able to yell, ''no pokes!" when it was time for jammies. #2) I read her a story about the bear who stays up for Christmas, and when I pointed out Santa Clause she started singing Jingle Bells! I didn't even know she knew that song!
Mere :0)
www.mandameow.blogspot.com
Saturday, November 15, 2008
Guess Not
The big side effect they worry about after receiving Adriamycin is mouth sores. They could lead to infection and/or dehydration. To combat the mouth sores Manda is taking Glutamine twice a day. So far we have only noticed a spot on her upper lip which is probably just chapped after spending a week in the hospital. My own lips came out quite chapped due to the super dry air on the Oncology floor. The Glutamine is actually an amino acid rather than a drug but we consider it just another med on her list. The good news is, when we are home, she takes her meds without question. It is only in the hospital that she will refuse whatever drink we try to hide them in. She is too smart for us!
Anyway, as Manda continues to request mustard and pretzels, I don't think she has mouth sores.
Mere :0)
www.mandameow.blogspot.com
Anyway, as Manda continues to request mustard and pretzels, I don't think she has mouth sores.
Mere :0)
www.mandameow.blogspot.com
Tuesday, November 11, 2008
Just Yay, All Over the Place!
It is our last night inpatient. Due to a calculation error, we are getting out on Wednesday morning instead of Tuesday. You see, I counted the four days as Saturday, Sunday, Monday and Tuesday. However, the IV goes from 5am Saturday morning to 5am Sunday morning and that is day one. Sunday to Monday, Monday to Tuesday, Tuesday to Wednesday then equals four days. *sigh* Thankfully we were able to juggle Amanda's OT appointment ...again...(Sorry Kristin!) and I can still work the rest of the week.
We spoke to the oncologist today about what we are looking at for the next couple of months. She originally wanted to "save" our Thanksgiving so she had us scheduled to do a week of outpatient chemo the first week of December. This would then put us inpatient again the week after Christmas. In her theory that meant her numbers would be high and she would be home for Christmas and able to enjoy the holiday feeling well, etc. However, the timing would NOT be good for my office as my boss and his wife have a scheduled c-section on the 29th, and it would not go over well if I wanted to be gone at the same time. SO, after a quick round of What Ifs with the doctor we agreed she will do the outpatient chemo during the week of Thanksgiving. This means coming into the hospital on Thanksgiving Day but it will only be for about an hour and a half and, to be honest, what better way to fully appreciate that for which we are truly thankful? Then, we will do the inpatient the week before Christmas, getting out on Christmas Eve. She should be just as active and well as she is now (cannot keep the kid still) so we should be able to enjoy our holiday celebrations with only a reminder to family and friends that if they are feeling unwell or have been exposed to anything they should please keep the Hell away from her. Really, I think it is a win-win. She gets the treatment she needs a week sooner than she would have, and I can be in the office when they need me. Yay!
The oncologist also said not to feel apprehensive about being inpatient that close to Christmas. She said there will be people coming by with gifts and treats all the time. She will not feel deprived of anything. I can fully believe this as just sitting here today minding our own business we were visited by The Rockettes and some therapy dogs! The Rockettes arrived just as Manda was drifting off for her nap so they called me out into the hallway and gave me a Barbie-like doll (a Rockette obviously) and took my picture with the girls. I don't feel like a fashion-plate on a good day, but after spending a week in the hospital and wearing jeans and a T-shirt next to these ladies dressed in sparkly gold mini-dresses and enough make-up to paint my house, I was feeling a bit under dressed for the occasion. But, I cannot think of another time in my life that I will get to have my picture taken with actual Rockettes so...
Looking forward to sleeping in my own bed tomorrow night instead of the pull-out chair next to Manda's crib. Someday I will write a review of all the different sitting/sleeping devices I have used during our journey through treatment. I actually have a preference for one particular couch, but I didn't know that until I had tried a couple other options. Ok, going to sleep now, it is going to be a long day tomorrow.
We spoke to the oncologist today about what we are looking at for the next couple of months. She originally wanted to "save" our Thanksgiving so she had us scheduled to do a week of outpatient chemo the first week of December. This would then put us inpatient again the week after Christmas. In her theory that meant her numbers would be high and she would be home for Christmas and able to enjoy the holiday feeling well, etc. However, the timing would NOT be good for my office as my boss and his wife have a scheduled c-section on the 29th, and it would not go over well if I wanted to be gone at the same time. SO, after a quick round of What Ifs with the doctor we agreed she will do the outpatient chemo during the week of Thanksgiving. This means coming into the hospital on Thanksgiving Day but it will only be for about an hour and a half and, to be honest, what better way to fully appreciate that for which we are truly thankful? Then, we will do the inpatient the week before Christmas, getting out on Christmas Eve. She should be just as active and well as she is now (cannot keep the kid still) so we should be able to enjoy our holiday celebrations with only a reminder to family and friends that if they are feeling unwell or have been exposed to anything they should please keep the Hell away from her. Really, I think it is a win-win. She gets the treatment she needs a week sooner than she would have, and I can be in the office when they need me. Yay!
The oncologist also said not to feel apprehensive about being inpatient that close to Christmas. She said there will be people coming by with gifts and treats all the time. She will not feel deprived of anything. I can fully believe this as just sitting here today minding our own business we were visited by The Rockettes and some therapy dogs! The Rockettes arrived just as Manda was drifting off for her nap so they called me out into the hallway and gave me a Barbie-like doll (a Rockette obviously) and took my picture with the girls. I don't feel like a fashion-plate on a good day, but after spending a week in the hospital and wearing jeans and a T-shirt next to these ladies dressed in sparkly gold mini-dresses and enough make-up to paint my house, I was feeling a bit under dressed for the occasion. But, I cannot think of another time in my life that I will get to have my picture taken with actual Rockettes so...
Looking forward to sleeping in my own bed tomorrow night instead of the pull-out chair next to Manda's crib. Someday I will write a review of all the different sitting/sleeping devices I have used during our journey through treatment. I actually have a preference for one particular couch, but I didn't know that until I had tried a couple other options. Ok, going to sleep now, it is going to be a long day tomorrow.
Monday, November 10, 2008
You Don't Get Rainbows Without a Little Rain
Amanda has known her colors for a long time now. This has come from the tutoring she receives from Daddy and his M&Ms. People are always impressed that she knows her colors, but is that really a stretch for an almost three-year-old? Anyway, since she knows her colors and wants to let everyone else know too, she announces the color of certain items to us throughout the day. I am Red Mommy today because I am wearing a red shirt. She tells each doctor and nurse what color stethoscope they are using to listen to her. Her new thing is, "Oh! Green Yellow!". This is in response to the lights on her IV pumps. They also have red numbers. The chemo that she is receiving is a red color too but it cannot be exposed to light so the IV tube is wrapped in heavy white tape from top to bottom.
I went into the office yesterday and left Daddy to entertain her for a while. I guess things went wrong about 10 minutes after I left. They were playing together on the floor when she stepped on her IV tube and then fell down with her foot still on the tube. This resulted in the IV being pulled out of her port! This is not good, especially with this particular chemo she is receiving. Though it can be pumped into her bloodstream for 96 continuous hours, if it touches any other body tissue it can cause horrific chemical burns and tissue damage. So, it took multiple nurses and Daddy holding her down to re-access the port (without the numbing cream) and get things set up again so that she could continue the chemo. They had to draw cultures this morning to ensure she did not develop any infections. Now, this was a " big huge scary deal* " and the immediate response from the nursing team was necessary and they came through fabulously. But, Daddy has sworn he will never again stay at the hospital alone while I go to work. He doesn't like doctors/hospitals on a GOOD day and this was a little much for him to handle. Poor guy. It reminded me of the birthday he had while she was in the NICU. I had excused myself to the lactation room and left him for a little Daddy Daughter time at her bedside. When I returned he was quite flustered and the nurse was with them. She had waited for that moment, when they were alone together, on his birthday, to have her first episode of bradycardia (drop in heart rate requiring stimulation to bring her back around to normal). *sigh* Maybe it is Manda's way of proclaiming she wants me here in the medical situations. Mommy doesn't mind doctors or watching procedures or holding her down for people to torture her in various ways. These things are very hard for Daddy.
This morning we are settling in for a quiet day with Elmo, blueberry fruitbars and ABC pretzels. I am hoping she will get through this hospitalization with that single episode of trauma/drama and the rest will be smooth sailing. She has two new balloons, one blue and one yellow. I keep thinking calming relaxing thoughts which for me always seem to be a sage green color.
Mere :O)
* "big huge scary deal" is a quote I stole from Dave Ramsey. I don't think he'll mind me using it.
Friday, November 7, 2008
Hanging Out and Bouncing Off the Walls
So here we are again. Manda ran around the clinic non-stop all day and finally fell asleep in Grammy's lap right before they gave her our room assignment. That is how I found them when I got here. Once she woke up it was full steam ahead again but this time we had a home base. If you think of the inpatient area as a large block letter A, the nurses station is at the top with two hallways stretching back and a shorter hall to connect them. With the stroller holding Baby, Elmo and Meow we walked/ran around and around and around and around. She has just settled down with her water to, no, scratch that. She was supposed to be settled down for the night but as I write this, she has once again gotten to her feet and is attempting to engage my interest by sitting on her LeapPad and saying things like, "Hi!" and "Uh-Oh!".
Aside from the obvious hyper nature of the girl, (I swear they put caffeine in the IV) she is doing really well. The AFP, the cancer marker we are watching in her blood work, has continued to drop post-surgery. Prior to surgery it was 16,450. Immediately after surgery it was 883. Today's number was 50! Our goal is <8. We will continue the aggressive chemo for two or three rounds after we reach that "normal" number, then they will do maintainance chemo in the hopes that it won't come back. We are getting closer.
Now, we shall settle in for the weekend. She is getting the Cisplatin now. That will finish about 1am. Then she is simply hydrated for four hours and the Adriamycin starts around 5am. This time it will be a full four day drip so it will finish on Tuesday at 5am. We should be able to head home that afternoon. She'll do fine, but wish me luck in keeping up with her!
Mere :0)
www.mandameow.blogspot.com
Aside from the obvious hyper nature of the girl, (I swear they put caffeine in the IV) she is doing really well. The AFP, the cancer marker we are watching in her blood work, has continued to drop post-surgery. Prior to surgery it was 16,450. Immediately after surgery it was 883. Today's number was 50! Our goal is <8. We will continue the aggressive chemo for two or three rounds after we reach that "normal" number, then they will do maintainance chemo in the hopes that it won't come back. We are getting closer.
Now, we shall settle in for the weekend. She is getting the Cisplatin now. That will finish about 1am. Then she is simply hydrated for four hours and the Adriamycin starts around 5am. This time it will be a full four day drip so it will finish on Tuesday at 5am. We should be able to head home that afternoon. She'll do fine, but wish me luck in keeping up with her!
Mere :0)
www.mandameow.blogspot.com
Wednesday, November 5, 2008
One for the History/Baby Book
Last night Amanda was practicing drinking from a "big girl cup". That would be one without a sippy spout, and therefore, no non-drip valve. She does fairly well with this, but sometimes gets carried away and tries to drink too fast resulting in water sloshing around her lips and down her front rather than into her mouth. This is why she practices at the dinner table and only with about an ounce of water at a time. She was doing really well, only a few stray drips when all of a sudden the cup tipped higher and water just poured down her front. I said, "Whoops!" and was on my way to fetch some paper towel when she put the cup down on the table, raised her hands in the air and yelled, "G*d D*mn it!". It was one of those moments when Daddy and I looked at each other and without words knew we were each thinking the same thing. "Did you hear what I think I just heard?" Trying hard not to react (as proper toddler parents are supposed to do in this situation) I retrieved the paper towel and blotted the wet spot on her Elmo shirt which was declaring her "2 Cute". The entire situation just hit me and I laughed. I said, "Well, it was bound to happen sometime." I guess I thought her first swear word would come as a direct repeat of what someone had just said, not out of the blue like this. So, a whee bit of censorship will now be used in the house that free speech built.
Mere :0)
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