All went well today. Mandy's counts are definitely trending down. The last four weeks have one like this 2100...1940...1490...760. There is a pretty good chance that she may not make counts for chemo next week. These numbers are called her ANC(Absolute Neutrophil Count) and is a gauge of her immunity. Her cycles of chemo are 6 weeks, 4 of those she gets chemo and then two weeks to rest for count recovery and then the next 6 week cycle begins. In order to start her 6 week cycle her ANC needs to be at least 1500 on Week 1, the first week back in chemo after a break. For weeks 2,3 and 4 her ANC has to be at least 500 to get chemo. Clear as mud so far? There will be a quiz afterwards, so pay attention.
So, looking at the definite downward trend she has been showing on this cycle, it is a real possibility she won't have an ANC above 500 next week, in which case they would hold chemo and wait for her counts to rebound.
She did great with chemo again today. I am so proud of her and how she has made the transition to the new place. I really thought it would take longer than it has, especially after how rough the first day was. But, she is a trooper and has done beautifully.
The Neuro-Oncologist called me today while we were still at clinic and told me the results of presenting the case to the tumor board. It was basically what I expected. Most of the time, in most Neurofibromatosis patients the hamartomas in the brain stem and several other areas, do not cause problems. I really hope that is true for her. However, Mandy has always been all about the "unusual presentation." Back in 2005, hamartomas on her cerebellum that should not have been symptomatic, were VERY symptomatic. So, that said, it kind of leaves us with they SHOULDN'T do anything, but in her case they could, just due to past history. They also agreed that the optic gliomas were stable from the scan in March to the scan in June. She will be due for another scan in September. So, nothing horrible, but nothing new either out of that. All the additional bloodwork came back. She is growth hormone deficient, which is no surprise at all. We couldn't treat for that even if we wanted to because obviously she has things that we don't want to grow. We have known this one for a while. No sign of precocious puberty, which is good. Thyroid was off a bit, but it seems that is only an anomaly to her and nothing to be concerned about.
The premedicating and longer infusion have handled the allergic reaction to the Carboplatin(one of her chemo drugs) very well. She has had no other issues, thank God!
We will have to make some decisions about the Atlantis trip after we see what her counts are like next week. It is not a good idea, or safe, to take her if her counts are bottomed out like that. We were told to kind of play it close to the vest this week and assume the counts are continuing to head down. So, no busy places(malls, playplaces, etc) and lots of diligent handwashing etc.
So, another on in the bag. Hopefully, she can swing those counts back up the other direction next week.
Thanks for checking on her!
Love to all~
Wednesday, July 16, 2008
Saturday, July 12, 2008
Boooring...gotta love it
Not much to report on a medical front today. Mandy was feeling good. She had a friend over for a while this afternoon and they painted their nails and went swimming and played Barbies. She has a bit of a rash from the band aid again, so no more band aids for her. How you can manage to develop an allergic reaction to a band aid is beyond me, but leave it to Mandy. She is all about making sure she comes up with new and different things the Dr's haven't seen before. She did request a Benadryl when she was trying to go to sleep as the itching was driving her batty.
Alannah is home from camp and had a great time, though she was ready to come home. Her concert was last night and it was FABULOUS! It was so funny, having a Daddy who plays guitar, as any guitar player knows, there is one song that you must learn. It is the FIRST song you must learn, and when you go into the music store to try on guitars, (cause you think if you wear a guitar you will get lots of chicks,not that Ronnie did this, mind you) you need to know this song. It is a incredibly easy guitar lick, but still makes you look like you know things(at least to people who don't know things, such as myself). So, you can turn your little Marshall amp up just as loud as it will go, strap on your Telecaster and belt it out. You are sure to get he attention of any potential groupies hanging out in the store. I have been in the guitar store, trust me, there are groupie wannabes there every day. Name that tune? It's "Smoke on the Water" by Deep Purple. If you play it loud enough and wear your guitar just right, you might be able to snare yourself your very own groupie. Por Ronnie, he never got a groupie, all he got was me. He so got jipped. So, Alannah is well acquainted with the song, kind of a long standing inside joke in our house. So you can imagine how giddy she and her Daddy were when the orchestra played "Smoke on the Water" at the concert. The look on her face was priceless. She was all serious viola player with this big, goofy, about to crack up look on her face. It was absolutely hysterical!
We did a whole lotta nothing today. Hung out, went to Wal-Mart for a few groceries, made dinner and ate all five of us at the same table(novel concept lately) and played a little ROCKBAND. Again, you ain't seen funny until you have seen my husband try to rap along with Faith No More. That man doesn't even the soul my shoes do. But, by golly he has the passion to scream it at the top of his lungs. We are gonna get us a VW bus, hang some beads in the window and go out on the road. We can totally kick the snot out of the Partridge Family. By the way, in case you were wondering, I suck at Guitar. Doubt I could even pull off "Smoke on the Water." No groupies for me. Mandy and I did a killer duet of Bon Jovi though! That's my girl.
Our daily dose of cancer in your face today comes to you courtesy of Jonas Salk. Mandy was talking about how they needed to come up with a shot to make you not get cancer, or a pill you can take if you do, that cures it "in a day, a week or even a whole month, cause that's a lot less than I have to take medicine for." She was bemoaning that the Dr's would never come up with such a miracle drug. Ronnie explained to her how polio used to run rampant and now it is virtually extinct because someone invented a vaccine for it. Her words, "Well, what's the hold up? Why can't they do that for cancer?" I guarantee if I sat that girl in the lab and had her telling them to hurry the heck up every 2.3 seconds, at the top of her lungs, they would figure something out pretty darn quick. Cause her? At the top of her lungs? You can turn your little Marshall amp up just as loud as it will go, and it doesn't stand a chance against her volume capabilities. Wonder if we could get Mandy some groupies? They could come to chemo with her and hold up their lighters and sway to the soundtrack of her Nintendo DS game. Not to mention they could go get lunch for us! That would ROCK!
Tomorrow the task list awaits...lawn mowing, housecleaning, laundry doing, blahblahblah. But today we just had fun being the five of us.
Hope you had a good ordinary day too!
Love to all~
Alannah is home from camp and had a great time, though she was ready to come home. Her concert was last night and it was FABULOUS! It was so funny, having a Daddy who plays guitar, as any guitar player knows, there is one song that you must learn. It is the FIRST song you must learn, and when you go into the music store to try on guitars, (cause you think if you wear a guitar you will get lots of chicks,not that Ronnie did this, mind you) you need to know this song. It is a incredibly easy guitar lick, but still makes you look like you know things(at least to people who don't know things, such as myself). So, you can turn your little Marshall amp up just as loud as it will go, strap on your Telecaster and belt it out. You are sure to get he attention of any potential groupies hanging out in the store. I have been in the guitar store, trust me, there are groupie wannabes there every day. Name that tune? It's "Smoke on the Water" by Deep Purple. If you play it loud enough and wear your guitar just right, you might be able to snare yourself your very own groupie. Por Ronnie, he never got a groupie, all he got was me. He so got jipped. So, Alannah is well acquainted with the song, kind of a long standing inside joke in our house. So you can imagine how giddy she and her Daddy were when the orchestra played "Smoke on the Water" at the concert. The look on her face was priceless. She was all serious viola player with this big, goofy, about to crack up look on her face. It was absolutely hysterical!
We did a whole lotta nothing today. Hung out, went to Wal-Mart for a few groceries, made dinner and ate all five of us at the same table(novel concept lately) and played a little ROCKBAND. Again, you ain't seen funny until you have seen my husband try to rap along with Faith No More. That man doesn't even the soul my shoes do. But, by golly he has the passion to scream it at the top of his lungs. We are gonna get us a VW bus, hang some beads in the window and go out on the road. We can totally kick the snot out of the Partridge Family. By the way, in case you were wondering, I suck at Guitar. Doubt I could even pull off "Smoke on the Water." No groupies for me. Mandy and I did a killer duet of Bon Jovi though! That's my girl.
Our daily dose of cancer in your face today comes to you courtesy of Jonas Salk. Mandy was talking about how they needed to come up with a shot to make you not get cancer, or a pill you can take if you do, that cures it "in a day, a week or even a whole month, cause that's a lot less than I have to take medicine for." She was bemoaning that the Dr's would never come up with such a miracle drug. Ronnie explained to her how polio used to run rampant and now it is virtually extinct because someone invented a vaccine for it. Her words, "Well, what's the hold up? Why can't they do that for cancer?" I guarantee if I sat that girl in the lab and had her telling them to hurry the heck up every 2.3 seconds, at the top of her lungs, they would figure something out pretty darn quick. Cause her? At the top of her lungs? You can turn your little Marshall amp up just as loud as it will go, and it doesn't stand a chance against her volume capabilities. Wonder if we could get Mandy some groupies? They could come to chemo with her and hold up their lighters and sway to the soundtrack of her Nintendo DS game. Not to mention they could go get lunch for us! That would ROCK!
Tomorrow the task list awaits...lawn mowing, housecleaning, laundry doing, blahblahblah. But today we just had fun being the five of us.
Hope you had a good ordinary day too!
Love to all~
Thursday, July 10, 2008
Home sweet home (or not)
Tomorrow all my peeps will be coming back to the nest. Ronnie will be in town, very briefly, from Friday afternoon until Sunday evening. We will be picking Alannah up from camp tomorrow night. I will be happy to have them all home!
Mandy did pretty well today for a post chemo day. She is just so tired. I had to wake her up this morning at 9:45 to take her to her neurologist appointment. I suspect she had a good other hour of sleep in her when I so rudely woke her. All was fine at the neurologist office. He and I talked a lot about prognosis etc. Nothing new to report there, really. She then slept from 2-7pm and then was back in bed at 9:30. She was in a pretty good mood when she was awake. We went for a short walk tonight and she really struggled with making it very far. She was tired quickly and winded and her legs hurt. The leg pain is a product of the neuropathy(nerve damage) and the Vincristine side effect. It is so hard to see her just not be able to do what she wants to do.
She ate no breakfast at all. I was thrilled as she ate some pizza for lunch. All she wanted for dinner was a little bit of Captain Crunch and she ate a total of about 6 pieces.
Speaking of normal things that aren't anymore. We had set her up last year for dual enrollment at school, meaning part of the time she would be at school and part of the time she would be at home with a teacher coming here. The original plan was she would go Mon- Wed, and then a teacher would come to the house Thur and Fri. Since her change in treatment days and the fatigue the chemo is causing she will only be in school Mon and Tues next year. I called to talk to the school district about this change today only to be told that her IEP and 540 had been CANCELED. After I swallowed a whole host of 4 letter words, I asked why it had been canceled. Seems no one knows the answer to that. The IEP and 540 are the plans that allow the special accommodations and teacher coming to the house. Frankly, I was proud that I maintained my cool. I had a CHAT with someone there and have a message pending for the administrator of the program. I hope to hear from her tomorrow. My hope with getting this done last year was that we would be able to hit the ground running this year and have it in place from the getgo. No one else seemed to get the memo about my plan. This, um, shall we say, irritated me, just a smidgen. In order to get his in place you have to fill out a small pile of paperwork and then get teacher, administrators, district reps and parents in one room for a meeting with the small pile of paperwork, some of which has to be signed by the social worker at the hospital. SO, it is a lot of leg work to get all that paperwork and all those people in one room at one time. And frankly, I already did that. So it takes an act of Congress to put the plan in place but apparently a flippin' typo can cancel it. I am told we will have to start all over with the people and the paperwork. From square one, which means all that from last year was a complete waste of time. I don't have time to waste. I mean if I did, I would do my laundry, for crying out loud. Obviously, I haven't done that so I must not have much free time on my hands.
Now, it's possible I am just in a bad mood. In case you hadn't caught on to that yet. (But, come on.. it was CANCELED! I still think I get extra credit for NOT saying what I wanted to say) That said, I suspect even if I was feeling all Susie Sunshine and in a great mood that still would have ticked me off to no end.
I am feeling some stress lately. And this? This was just one more thing on my ever growing and never, ever shrinking list of things to do. I think it is just that time and it is all adding up. Ronnie has been swamped at work. And work for him is almost always somewhere other than the confines of the Sunshine State of Florida. This week found him in Canada again all week. I would love to find time to just go out on a date with him. Honestly, even when we do manage to find a few minutes alone, the conversation revolves around dr's and bloodcounts and worry how the kids are coping. I had to apologize to him the other day for basically being wretched. Frankly, I am surprised he wants to come home!
I spend so much time and energy making sure that the kids are okay, and going through each day pretending all is some semblance of right with the world for their sake, I just don't have much left at the end of the day. I am trying to make huge decisions about school for Mandy and Zachary next year and what school to send them to. Since I won't be working at the school again next year, there is a part of me that wants to put them back in their neighborhood school, instead of the magnet school they are in now. They only went to the magnet school for part of the year last year, so to go back to the neighborhood school would not be a disruptive change to them. I have after school care issues with Zachary on Wednesdays at the neighborhood school that I don't have at the magnet school. I just don't know and can't seem to figure out the right answer. I am stressed about money and bills. I am stressed worrying that I don't make this as easy on the kids as it possibly could be. I try, but I worry I don't succeed. I am stressed I am not as good at helping to ease Ronnie's mind as I should be. I am stressed about the laundry that never gets done. I am stressed about my house that never gets cleaned completely. I am stressed that poor Zachary seems to always get shuffled off somewhere, not that he doesn't love hanging with his buds, he truly does and would so much rather be there building Lego Metropolis than any of the fun filled appointments Mandy has. I just don't want him to feel cast aside either. I am stressed worrying in general. I am just stressed. I think I am just tired.
The upside is the kids all seem to be acclimating to the new abnormal normal and doing as well as could possibly be expected of them. Mandy seems to be less sad than in recent weeks, which makes me so happy. Zachary is smiling and joking his way through, as is typical. I think the two week break at camp has been a great thing for Alannah.
If I have said it once, I have said it a million times, this is a marathon, not a sprint and I guess i have just reached that point where a marathon runner would say they have hit the wall. I will keep running through the wall and will be fine. But, man, I sure need someone to hand me a Gatorade from the sidelines. Plus, I think chucking that paper cup with a little bit of anger behind it might make me feel better too.
Love to all~
Mandy did pretty well today for a post chemo day. She is just so tired. I had to wake her up this morning at 9:45 to take her to her neurologist appointment. I suspect she had a good other hour of sleep in her when I so rudely woke her. All was fine at the neurologist office. He and I talked a lot about prognosis etc. Nothing new to report there, really. She then slept from 2-7pm and then was back in bed at 9:30. She was in a pretty good mood when she was awake. We went for a short walk tonight and she really struggled with making it very far. She was tired quickly and winded and her legs hurt. The leg pain is a product of the neuropathy(nerve damage) and the Vincristine side effect. It is so hard to see her just not be able to do what she wants to do.
She ate no breakfast at all. I was thrilled as she ate some pizza for lunch. All she wanted for dinner was a little bit of Captain Crunch and she ate a total of about 6 pieces.
Speaking of normal things that aren't anymore. We had set her up last year for dual enrollment at school, meaning part of the time she would be at school and part of the time she would be at home with a teacher coming here. The original plan was she would go Mon- Wed, and then a teacher would come to the house Thur and Fri. Since her change in treatment days and the fatigue the chemo is causing she will only be in school Mon and Tues next year. I called to talk to the school district about this change today only to be told that her IEP and 540 had been CANCELED. After I swallowed a whole host of 4 letter words, I asked why it had been canceled. Seems no one knows the answer to that. The IEP and 540 are the plans that allow the special accommodations and teacher coming to the house. Frankly, I was proud that I maintained my cool. I had a CHAT with someone there and have a message pending for the administrator of the program. I hope to hear from her tomorrow. My hope with getting this done last year was that we would be able to hit the ground running this year and have it in place from the getgo. No one else seemed to get the memo about my plan. This, um, shall we say, irritated me, just a smidgen. In order to get his in place you have to fill out a small pile of paperwork and then get teacher, administrators, district reps and parents in one room for a meeting with the small pile of paperwork, some of which has to be signed by the social worker at the hospital. SO, it is a lot of leg work to get all that paperwork and all those people in one room at one time. And frankly, I already did that. So it takes an act of Congress to put the plan in place but apparently a flippin' typo can cancel it. I am told we will have to start all over with the people and the paperwork. From square one, which means all that from last year was a complete waste of time. I don't have time to waste. I mean if I did, I would do my laundry, for crying out loud. Obviously, I haven't done that so I must not have much free time on my hands.
Now, it's possible I am just in a bad mood. In case you hadn't caught on to that yet. (But, come on.. it was CANCELED! I still think I get extra credit for NOT saying what I wanted to say) That said, I suspect even if I was feeling all Susie Sunshine and in a great mood that still would have ticked me off to no end.
I am feeling some stress lately. And this? This was just one more thing on my ever growing and never, ever shrinking list of things to do. I think it is just that time and it is all adding up. Ronnie has been swamped at work. And work for him is almost always somewhere other than the confines of the Sunshine State of Florida. This week found him in Canada again all week. I would love to find time to just go out on a date with him. Honestly, even when we do manage to find a few minutes alone, the conversation revolves around dr's and bloodcounts and worry how the kids are coping. I had to apologize to him the other day for basically being wretched. Frankly, I am surprised he wants to come home!
I spend so much time and energy making sure that the kids are okay, and going through each day pretending all is some semblance of right with the world for their sake, I just don't have much left at the end of the day. I am trying to make huge decisions about school for Mandy and Zachary next year and what school to send them to. Since I won't be working at the school again next year, there is a part of me that wants to put them back in their neighborhood school, instead of the magnet school they are in now. They only went to the magnet school for part of the year last year, so to go back to the neighborhood school would not be a disruptive change to them. I have after school care issues with Zachary on Wednesdays at the neighborhood school that I don't have at the magnet school. I just don't know and can't seem to figure out the right answer. I am stressed about money and bills. I am stressed worrying that I don't make this as easy on the kids as it possibly could be. I try, but I worry I don't succeed. I am stressed I am not as good at helping to ease Ronnie's mind as I should be. I am stressed about the laundry that never gets done. I am stressed about my house that never gets cleaned completely. I am stressed that poor Zachary seems to always get shuffled off somewhere, not that he doesn't love hanging with his buds, he truly does and would so much rather be there building Lego Metropolis than any of the fun filled appointments Mandy has. I just don't want him to feel cast aside either. I am stressed worrying in general. I am just stressed. I think I am just tired.
The upside is the kids all seem to be acclimating to the new abnormal normal and doing as well as could possibly be expected of them. Mandy seems to be less sad than in recent weeks, which makes me so happy. Zachary is smiling and joking his way through, as is typical. I think the two week break at camp has been a great thing for Alannah.
If I have said it once, I have said it a million times, this is a marathon, not a sprint and I guess i have just reached that point where a marathon runner would say they have hit the wall. I will keep running through the wall and will be fine. But, man, I sure need someone to hand me a Gatorade from the sidelines. Plus, I think chucking that paper cup with a little bit of anger behind it might make me feel better too.
Love to all~
Wednesday, July 9, 2008
ZZZZZZZZzzzzzzzzzzzzzzzzz
It's official. We really, really like our new hospital. We were back in the Tampa office of All Children's this week, instead of the St Pete office we were in last week. This is the scene of the initial complete and utter meltdown the first week we switched. I was worried about going back and switching locations again(in her mind at least). She was GREAT! I was so proud of her. She was brave and happy and cooperative. She did a fantastic job and I think it is safe to say we are officially over the hump.
We had our first meeting with the Neuro-Oncologist. She seemed great. She had not yet seen Mandy's MRI's. But, we talked about everything and she seemed to know not only brain tumors in general, but also Neuro-fibromatosis. So, I was impressed and feel really positive about the decision we made to move. She will be presenting Mandy's case to the tumor board. This is a concept I have always loved for my "unusual presentation" brain tumor child. Tumor board is when basically everyone, who is anyone in relation to the care and understanding of tumors sits down at one table and talks about each patient. It consists of neurologists, neuro-oncologist, neuro-surgeon, radiologist and oncologist. I expect it will take a while for the practice to get a handle on Mandy's case as it is so out of the usual for NF kids. But, right now, I have a lot of faith in them and feel good about it.
Mandy did beautifully today at chemo. Her blood counts were good. She was so bored by the end of it all. She was hooked up and being treated from 9:30-6:00. There were no allergic reactions again this week so the premedicating and slower infusion seem to be doing exactly what we hoped they would do. Thank God!
Just to give you an idea of the timeline...
1) Triage from nurse(vitals etc)10 minutes
2) Dr exam time depends on how many of my 9.3 million questions I torment them with that day
3) Access her port time depends on what number Mandy picks to count to before the nurse can use the needle
4) Flush port with Heparin(anti clotting drug) and draw blood for all bloodwork
5)Run in 20mg Benadryl(antihistamine to combat allergy to Chemo drug) about 15 minutes
6) Run in 40 of Hydrocortisone(steroid to combat allergy also)about 20 minutes
7) Run in Zofran(anti nausea) about 15 minutes
8) Run in Vincristine (first chemo drug) about 10 minutes
9) Run in Carboplatin (second chemo drug) 3 hours
10)Run in Saline (post chemo hydration) 2-3 hours
11)De-access port about 10 minutes
Finally done. And for the most part she is sitting in the same chair in the infusion room with basically movie watching, nintendo playing, coloring, reading or other stationary activities. Not hard to understand why she is bored out of her gourd by the time it is all said and done.
We got exciting news and have the official travel dates for Mandy's dream trip! She will be going to Atlantis from Aug 8-10! She is even going to take the other four of us with her. How about that!? She is so excited!
I don't have any other information yet, but will soon.
I am sooooo stupid tired tonight. I can't even see tired from where I sit. Merely just being tired would be a huge improvement. So I am off to bed.
Gotta be up early to head of to Mandy's neurologist appointment. My kid LOVES her neurologist!! He is the only Dr that gets this conversation.
"Hey Mandy , you have an appointment with Dr Foradada tomorrow."
"WOOOOOOOOHOOOOOOO, I LOVE DR FORADADA!"
She is genuinely excited to go see him. Hopefully she won't be too sick tonight and tomorrow.
Thanks for checking on her. Love to all~
We had our first meeting with the Neuro-Oncologist. She seemed great. She had not yet seen Mandy's MRI's. But, we talked about everything and she seemed to know not only brain tumors in general, but also Neuro-fibromatosis. So, I was impressed and feel really positive about the decision we made to move. She will be presenting Mandy's case to the tumor board. This is a concept I have always loved for my "unusual presentation" brain tumor child. Tumor board is when basically everyone, who is anyone in relation to the care and understanding of tumors sits down at one table and talks about each patient. It consists of neurologists, neuro-oncologist, neuro-surgeon, radiologist and oncologist. I expect it will take a while for the practice to get a handle on Mandy's case as it is so out of the usual for NF kids. But, right now, I have a lot of faith in them and feel good about it.
Mandy did beautifully today at chemo. Her blood counts were good. She was so bored by the end of it all. She was hooked up and being treated from 9:30-6:00. There were no allergic reactions again this week so the premedicating and slower infusion seem to be doing exactly what we hoped they would do. Thank God!
Just to give you an idea of the timeline...
1) Triage from nurse(vitals etc)10 minutes
2) Dr exam time depends on how many of my 9.3 million questions I torment them with that day
3) Access her port time depends on what number Mandy picks to count to before the nurse can use the needle
4) Flush port with Heparin(anti clotting drug) and draw blood for all bloodwork
5)Run in 20mg Benadryl(antihistamine to combat allergy to Chemo drug) about 15 minutes
6) Run in 40 of Hydrocortisone(steroid to combat allergy also)about 20 minutes
7) Run in Zofran(anti nausea) about 15 minutes
8) Run in Vincristine (first chemo drug) about 10 minutes
9) Run in Carboplatin (second chemo drug) 3 hours
10)Run in Saline (post chemo hydration) 2-3 hours
11)De-access port about 10 minutes
Finally done. And for the most part she is sitting in the same chair in the infusion room with basically movie watching, nintendo playing, coloring, reading or other stationary activities. Not hard to understand why she is bored out of her gourd by the time it is all said and done.
We got exciting news and have the official travel dates for Mandy's dream trip! She will be going to Atlantis from Aug 8-10! She is even going to take the other four of us with her. How about that!? She is so excited!
I don't have any other information yet, but will soon.
I am sooooo stupid tired tonight. I can't even see tired from where I sit. Merely just being tired would be a huge improvement. So I am off to bed.
Gotta be up early to head of to Mandy's neurologist appointment. My kid LOVES her neurologist!! He is the only Dr that gets this conversation.
"Hey Mandy , you have an appointment with Dr Foradada tomorrow."
"WOOOOOOOOHOOOOOOO, I LOVE DR FORADADA!"
She is genuinely excited to go see him. Hopefully she won't be too sick tonight and tomorrow.
Thanks for checking on her. Love to all~
Sunday, July 6, 2008
Whew, what a whirlwind weekend
Mrs Baird, my high school Honors English teacher would be so proud of my use of alliteration in the title. Nice to know I didn't sleep through the WHOLE class.
This weekend was indeed a whirlwind. Friday we got to be in the Brandon July 4th parade, courtesy of our friend Rob of Dynamic Painting. When he asked if Mandy and Zachary would like to ride in the back of his Dynamic truck and chuck beads at parade goers, they didn't have to ponder their answer too long! We had to work through a few kinks....as in Mandy was just all about throwing beads. If people were there, great. If people weren't....whatever.Their loss. Her job was to throw bead and by cracky, she was throwing the darn beads. It was all about the delivery, baby.
Zachary had a great time and got to wave to lots of his buddies from the truck. Thanks, Rob for giving them such a great 4th!!
We came home and Mandy rested for a little bit. She was pretty incredibly wiped out after the parade. Zachary is all about being a man these days. Ronnie needed to mow the yard....needed as in I had an ulterior motive to be revealed in a second AND needed as in we were about to become a federally protected wildlife refuge if he didn't. Given that the only wildlife I really want in my backyard is my kids and dog, we opted for mowing. And there is that whole ulterior motive thing too. So, Ronnie has decided now that Mandy can get his remote, Alannah can cook dinner and Zachary can do this:
his life is complete.
After that we headed out to pick Alannah up from camp for her birthday dinner. Thanks to the Children's Cancer Center, we were able to give Alannah a birthday gift that made her make this face in shock and joy and disbelief.
That, my friends, is the face you get when you give a 14 year old girl a laptop to call her own!! The Center gets refurbished, used laptops that they give to the families. Mary Ann, the director, was kind enough to give us one to give to Alannah and as you can see, the reaction was shock and awe! LOVE IT! Thanks so much to the Center for bringing that kind of smile to her face!
We took her and two of her best friends, Tara and Jordan out to dinner at Chili's for her birthday. She is having a great time at camp and it was great to see her. I just love the kids she choses to surround herself with. Tara and Jordan are great kids and it was fun to watch the three of them chat during dinner. We took them all back to camp and headed home. We watched the fireworks for a little while from the backyard and then shuffled the kids off to bed.
The next day brought Saturday and Ronnie's 40th birthday. Which, for anyone keeping track, is SIGNIFICANTLY older than me! This is where my ulterior motive for the lawn mowing thing come into play. I had every intention of throwing a little surprise gathering for him to celebrate. However, the surprise kind of went by the wayside, when I couldn't figure out how to kick him out of the house for the whole day. I figure he might have gotten a tad bit suspicious if I returned from the store with a case of beer when he was leaving the next day for a week in Canada. So, I rolled on the surprise and did a great reveal a little bit early and coupled the "Surprise!" with a "Time for a cleaning frenzy!" Poor guy. Nothing says happy birthday like having me bark cleaning orders at you.
We had a great small group of close friends come for Mexican food, drinks and some fun. The "fun" came in the form a big box labeled ROCKBAND. Trust me, you don't know fun until you have seen grown men and women sing, play the drums and play guitar to a bunch of rock songs. It was a HOOT!!
Notice the concentration in the faces of the "band!" Also, just as an fyi, girl bands ROCK! We knocked Bon Jovi, "Wanted Dead or Alive" out of the park! Though, no one could even come close to comparing with Ted's drum skills. He's got mad skills, baby, mad skills. Ronnie rocked on the guitar. Lessons learned from the evening. We have GREAT friends and love each and everyone of them! Also, just because you have a few glasses of Sangria, it doesn't mean you are now suddenly the best singer that American Idol has yet to find. I know, I know, sad but true. Thanks so much everybody for making Ronnie feel the love from you all on his milestone birthday! Honey, I love you and hope even though the surprise wasn't so, um, surprising, that you had a great time anyway! Happy birthday!!!
Mandy did okay with all the hustle and bustle this weekend. She was feeling pretty crummy on Thursday, post chemo. It was hard to get a big enough window of time to get some Ativan in her to stop the vomiting. I finally did and it was a huge help. It is so tough to see her feel that way on days like that. It just breaks my heart. She literally can not even hold her head up out of the basin she is getting sick into. I have to hold her head up for her. She is back to sleeping a lot, about 14 hours a day. The first week back on chemo is always tough. Her counts were lower this week so that is contributing to the fatigue. She is complaining that her eye hurts lately. So that is something we will definitely talk to the Docs about this week. Mandy has a marathon chemo day on Wednesday(about 6-8 hours) as well as our first meeting with the neuro-oncologist and then an appointment with her neurologist on Thursday. So, lots and lots of hospital/doctors office time this week.
A sad and interesting conversation with Mandy and Zachary today after as we were leaving Alannah's camp. She is at a college campus that was designed primarily by Frank Lloyd Wright back in the 1920's. Apparently, there is a maze of underground tunnels that go all over the campus. They have been sealed off due to asbestos insulation. Alannah was telling Zachary about these tunnels, he was of course fascinated and wanted a tour, right NOW! Alannah was explaining the carcinogen concerns of asbestos and how they don't let you down there because asbestos can cause cancer. Mandy was listening quietly to this conversation. She sighs sadly and says, "Well, I guess it doesn't matter if I go down there because I already have cancer." It broke my heart. She was just so sad and resigned when she said it.
So, that was our wild weekend. Thanks to all of you who helped make it a wild, whirlwind weekend! See, there it is again, Mrs Baird. I may have slept through the lecture on how "Lord of the Flies" was actually a political commentary, but by golly, I learned the literary terms.
Hope everyone had a great 4th!
Love to all~
This weekend was indeed a whirlwind. Friday we got to be in the Brandon July 4th parade, courtesy of our friend Rob of Dynamic Painting. When he asked if Mandy and Zachary would like to ride in the back of his Dynamic truck and chuck beads at parade goers, they didn't have to ponder their answer too long! We had to work through a few kinks....as in Mandy was just all about throwing beads. If people were there, great. If people weren't....whatever.Their loss. Her job was to throw bead and by cracky, she was throwing the darn beads. It was all about the delivery, baby.
Zachary had a great time and got to wave to lots of his buddies from the truck. Thanks, Rob for giving them such a great 4th!!
We came home and Mandy rested for a little bit. She was pretty incredibly wiped out after the parade. Zachary is all about being a man these days. Ronnie needed to mow the yard....needed as in I had an ulterior motive to be revealed in a second AND needed as in we were about to become a federally protected wildlife refuge if he didn't. Given that the only wildlife I really want in my backyard is my kids and dog, we opted for mowing. And there is that whole ulterior motive thing too. So, Ronnie has decided now that Mandy can get his remote, Alannah can cook dinner and Zachary can do this:
his life is complete.
After that we headed out to pick Alannah up from camp for her birthday dinner. Thanks to the Children's Cancer Center, we were able to give Alannah a birthday gift that made her make this face in shock and joy and disbelief.
That, my friends, is the face you get when you give a 14 year old girl a laptop to call her own!! The Center gets refurbished, used laptops that they give to the families. Mary Ann, the director, was kind enough to give us one to give to Alannah and as you can see, the reaction was shock and awe! LOVE IT! Thanks so much to the Center for bringing that kind of smile to her face!
We took her and two of her best friends, Tara and Jordan out to dinner at Chili's for her birthday. She is having a great time at camp and it was great to see her. I just love the kids she choses to surround herself with. Tara and Jordan are great kids and it was fun to watch the three of them chat during dinner. We took them all back to camp and headed home. We watched the fireworks for a little while from the backyard and then shuffled the kids off to bed.
The next day brought Saturday and Ronnie's 40th birthday. Which, for anyone keeping track, is SIGNIFICANTLY older than me! This is where my ulterior motive for the lawn mowing thing come into play. I had every intention of throwing a little surprise gathering for him to celebrate. However, the surprise kind of went by the wayside, when I couldn't figure out how to kick him out of the house for the whole day. I figure he might have gotten a tad bit suspicious if I returned from the store with a case of beer when he was leaving the next day for a week in Canada. So, I rolled on the surprise and did a great reveal a little bit early and coupled the "Surprise!" with a "Time for a cleaning frenzy!" Poor guy. Nothing says happy birthday like having me bark cleaning orders at you.
We had a great small group of close friends come for Mexican food, drinks and some fun. The "fun" came in the form a big box labeled ROCKBAND. Trust me, you don't know fun until you have seen grown men and women sing, play the drums and play guitar to a bunch of rock songs. It was a HOOT!!
Notice the concentration in the faces of the "band!" Also, just as an fyi, girl bands ROCK! We knocked Bon Jovi, "Wanted Dead or Alive" out of the park! Though, no one could even come close to comparing with Ted's drum skills. He's got mad skills, baby, mad skills. Ronnie rocked on the guitar. Lessons learned from the evening. We have GREAT friends and love each and everyone of them! Also, just because you have a few glasses of Sangria, it doesn't mean you are now suddenly the best singer that American Idol has yet to find. I know, I know, sad but true. Thanks so much everybody for making Ronnie feel the love from you all on his milestone birthday! Honey, I love you and hope even though the surprise wasn't so, um, surprising, that you had a great time anyway! Happy birthday!!!
Mandy did okay with all the hustle and bustle this weekend. She was feeling pretty crummy on Thursday, post chemo. It was hard to get a big enough window of time to get some Ativan in her to stop the vomiting. I finally did and it was a huge help. It is so tough to see her feel that way on days like that. It just breaks my heart. She literally can not even hold her head up out of the basin she is getting sick into. I have to hold her head up for her. She is back to sleeping a lot, about 14 hours a day. The first week back on chemo is always tough. Her counts were lower this week so that is contributing to the fatigue. She is complaining that her eye hurts lately. So that is something we will definitely talk to the Docs about this week. Mandy has a marathon chemo day on Wednesday(about 6-8 hours) as well as our first meeting with the neuro-oncologist and then an appointment with her neurologist on Thursday. So, lots and lots of hospital/doctors office time this week.
A sad and interesting conversation with Mandy and Zachary today after as we were leaving Alannah's camp. She is at a college campus that was designed primarily by Frank Lloyd Wright back in the 1920's. Apparently, there is a maze of underground tunnels that go all over the campus. They have been sealed off due to asbestos insulation. Alannah was telling Zachary about these tunnels, he was of course fascinated and wanted a tour, right NOW! Alannah was explaining the carcinogen concerns of asbestos and how they don't let you down there because asbestos can cause cancer. Mandy was listening quietly to this conversation. She sighs sadly and says, "Well, I guess it doesn't matter if I go down there because I already have cancer." It broke my heart. She was just so sad and resigned when she said it.
So, that was our wild weekend. Thanks to all of you who helped make it a wild, whirlwind weekend! See, there it is again, Mrs Baird. I may have slept through the lecture on how "Lord of the Flies" was actually a political commentary, but by golly, I learned the literary terms.
Hope everyone had a great 4th!
Love to all~
Thursday, July 3, 2008
Happy 14th Birthday Alannah!!
"I. NEED. TO. PUSH!"
"No, you can't yet. You have to wait for the Doctor."
Ok, so really I can't type my response to that, because this is, after all a family show. Anyone out there who has given birth knows that saying no you can't push when it is about 10 minutes past when you really wanted to start pushing is like saying to
my husband "Don't channel surf during commercials." Somethings you just can't help. Gee, okay. Suffice it to say, the fact that apparently my Ob/Gyn was enjoying his 4th of July festivities and was taking his own sweet time showing up at the freaking hospital did not make me overwhelmed with joy. That whole brief thought I had of natural childbirth. Yea, bad idea. Cause ya know what? IT REALLY FREAKIN HURTS!
In an even more cruel twist of fate, no anesthesiologist shows up in my room, with his bag of happy drugs. Ever. He never came. Well he did, eventually, but was so a day late and a dollar short I can't even tell you. I so wanted happy drugs. I wanted happy drugs more than I wanted air at that moment. But, nooooooooo, Dr. (I Went to school for 10 years, have $120k worth of student loans to show for it and I hold all the happy drugs) Feelgood apparently didn't believe that a first time Mom could be progressing so quickly. To prove him wrong, I think I could have shot that baby out at him like a bazooka and given him a concussion from the fall onto the hard hospital floor. That is if he had ever bothered to show up. Which he didn't.
Now, little did I know at this point that I delivered babies like a human Pez dispenser. I know, I know all of you who take 3 days to deliver a baby have no sympathy for my super fast labor plight. Trust me though, it ain't all it's cracked up to be. Super fast labor + super hard contractions+no time for Dr Feelgood to show up=super big ouch. So, a mere 2 hours and several ear piercing screams(ear piercing, as in the nurse told me to stop screaming because I was scaring the other patients. Really?? Gee, I'm sorry, but they should be scared. This hospital has no anesthesiologist!!)and two really rude yanks with a set of forceps she was here. She took her sweet time breathing. It was an incredibly long first minute of her life. She came around, but I only got to see her for a second before she was whisked off to NICU. Shortly after that Dr Feelgood shows up with his happy bag of yummy goodness. Yea, no one has seen him since, except on the back of a milk carton. I did it all by myself, Dr Feelgood. THANKYOUVERYMUCH! I am woman, hear me roar! I don't need your stinkin' drugs. Note to self, natural childbirth sucks, send Dr Feelgood a nice fruit basket and hope he shows up should you decide to have kid number two. Which by the way, he didn't when kid number two arrived, but that is another birthday post.
I threw a fit of epic proportions about an hour later when they still would not bring her to me or let me go see her. Something about my head spinning around and green stuff spewing out of my mouth ala "The Exorcist" prompted them to reconsider not letting me go see her. That whole Mama Bear, don't get between me and my cub, kicks in immediately.
She was the most beautiful thing I had ever seen. I was stunned at her existence. I was looking at MY DAUGHTER. WOW. Now, truth be told...she was one ugly newborn. She had a head that was all set for an audition for the Coneheads, a black eye and an ear bent in a funny direction. At the time, I had absolutely no idea that she looked like she had lost a round or 7 with Ali. She was the most beautiful thing ever. EVER.
She was released within another few hours from NICU and all was well. I held her and wouldn't let go. I stared at her lovely little face with the most awe and wonder I had ever experienced. Ten beautiful fingers, long piano playing ones, like her Mom. Ten of the cutest toes attached to two of the cutest baby feet ever to grace the planet Earth. Amazing.
My first born child was the easiest child on the face of the planet. She slept through the night at 5 weeks old. Now, because I was a first time Mom, I like the uber idiot that I was, felt the need to wake her up to verify all was well. I did this until my pediatrician took me out back and smacked me upside my sleep deprived little head and said in no uncertain terms...."NEVER EVER WAKE A SLEEPING BABY, YOU DORK." Woops, um, ok. Won't do that again. Sorry. DUH
She nursed easily, gained weight like a supermodel at a Burger King and was of course the smartest kid ever.
She never had colic and other than a really ugly bout of not wanting to go to sleep, like ever, when she was about 2, she was a dream baby. Now in all fairness, she could shoot spit up across a room and get a good 20' of distance to find the person with the nicest, most expensive and most neatly pressed shirt in the room. Mercifully, this was almost never me. She had an uncanny ability to fill the nastiest diapers the minute we got on a plane. Thank goodness, this was before the days of air marshalls or we so would have been kicked of the plane for carrying on environmental weapons. She read crazy early and finished the Little House series on her own the summer before she started kindergarten. She potty trained relatively easily. She's a klutz of epic proportions and a geek to go with it. She has a heart of gold and has been old since the day she was born.
Today she is 14. FOURTEEN. I have no idea how that happened. She is a marvelous young woman. I am so incredibly proud to call her my daughter.
She has a mind of her own, this young woman who is now my daughter. She has a black and white definition of right and wrong. She wants to save the world and all of the children in it, especially those who have special needs or circumstances. My love affair with this amazing creature began 14 years ago and has only increased over time. She got her daddy's brain and writing ability. She is so his child, it is not even funny. To either one of them, the "Great Missing Nintendo DS Mystery of 2008" could just be any given Tuesday. As is common with crazy smart people, she is also a flake of epic proportions.
I wish I could take credit for it and say she is the amazing kid she is today because I am the best mother ever to punch out an anesthesiologist. I can't take though. She came out this way.
Baby, the apron strings have to get longer and longer the older you get, but rest assured my heart strings hold you just as tight as the day you and the fireworks celebrated yours and America's birthday back in 1994. Thank you for being my baby girl, no matter how old you get. Thank you for the fact that even at 14 you still don't get offended when I call you "bear" even in front of your friends. Thank you for crying with me at just the right spot in "Steel Magnolias." Thank you for trusting me and thinking I still have answers. For the gift that is my oldest daughter, Alannah Louise, I say thank you every single day. I love you, bear. Happy Birthday!
"No, you can't yet. You have to wait for the Doctor."
Ok, so really I can't type my response to that, because this is, after all a family show. Anyone out there who has given birth knows that saying no you can't push when it is about 10 minutes past when you really wanted to start pushing is like saying to
my husband "Don't channel surf during commercials." Somethings you just can't help. Gee, okay. Suffice it to say, the fact that apparently my Ob/Gyn was enjoying his 4th of July festivities and was taking his own sweet time showing up at the freaking hospital did not make me overwhelmed with joy. That whole brief thought I had of natural childbirth. Yea, bad idea. Cause ya know what? IT REALLY FREAKIN HURTS!
In an even more cruel twist of fate, no anesthesiologist shows up in my room, with his bag of happy drugs. Ever. He never came. Well he did, eventually, but was so a day late and a dollar short I can't even tell you. I so wanted happy drugs. I wanted happy drugs more than I wanted air at that moment. But, nooooooooo, Dr. (I Went to school for 10 years, have $120k worth of student loans to show for it and I hold all the happy drugs) Feelgood apparently didn't believe that a first time Mom could be progressing so quickly. To prove him wrong, I think I could have shot that baby out at him like a bazooka and given him a concussion from the fall onto the hard hospital floor. That is if he had ever bothered to show up. Which he didn't.
Now, little did I know at this point that I delivered babies like a human Pez dispenser. I know, I know all of you who take 3 days to deliver a baby have no sympathy for my super fast labor plight. Trust me though, it ain't all it's cracked up to be. Super fast labor + super hard contractions+no time for Dr Feelgood to show up=super big ouch. So, a mere 2 hours and several ear piercing screams(ear piercing, as in the nurse told me to stop screaming because I was scaring the other patients. Really?? Gee, I'm sorry, but they should be scared. This hospital has no anesthesiologist!!)and two really rude yanks with a set of forceps she was here. She took her sweet time breathing. It was an incredibly long first minute of her life. She came around, but I only got to see her for a second before she was whisked off to NICU. Shortly after that Dr Feelgood shows up with his happy bag of yummy goodness. Yea, no one has seen him since, except on the back of a milk carton. I did it all by myself, Dr Feelgood. THANKYOUVERYMUCH! I am woman, hear me roar! I don't need your stinkin' drugs. Note to self, natural childbirth sucks, send Dr Feelgood a nice fruit basket and hope he shows up should you decide to have kid number two. Which by the way, he didn't when kid number two arrived, but that is another birthday post.
I threw a fit of epic proportions about an hour later when they still would not bring her to me or let me go see her. Something about my head spinning around and green stuff spewing out of my mouth ala "The Exorcist" prompted them to reconsider not letting me go see her. That whole Mama Bear, don't get between me and my cub, kicks in immediately.
She was the most beautiful thing I had ever seen. I was stunned at her existence. I was looking at MY DAUGHTER. WOW. Now, truth be told...she was one ugly newborn. She had a head that was all set for an audition for the Coneheads, a black eye and an ear bent in a funny direction. At the time, I had absolutely no idea that she looked like she had lost a round or 7 with Ali. She was the most beautiful thing ever. EVER.
She was released within another few hours from NICU and all was well. I held her and wouldn't let go. I stared at her lovely little face with the most awe and wonder I had ever experienced. Ten beautiful fingers, long piano playing ones, like her Mom. Ten of the cutest toes attached to two of the cutest baby feet ever to grace the planet Earth. Amazing.
My first born child was the easiest child on the face of the planet. She slept through the night at 5 weeks old. Now, because I was a first time Mom, I like the uber idiot that I was, felt the need to wake her up to verify all was well. I did this until my pediatrician took me out back and smacked me upside my sleep deprived little head and said in no uncertain terms...."NEVER EVER WAKE A SLEEPING BABY, YOU DORK." Woops, um, ok. Won't do that again. Sorry. DUH
She nursed easily, gained weight like a supermodel at a Burger King and was of course the smartest kid ever.
She never had colic and other than a really ugly bout of not wanting to go to sleep, like ever, when she was about 2, she was a dream baby. Now in all fairness, she could shoot spit up across a room and get a good 20' of distance to find the person with the nicest, most expensive and most neatly pressed shirt in the room. Mercifully, this was almost never me. She had an uncanny ability to fill the nastiest diapers the minute we got on a plane. Thank goodness, this was before the days of air marshalls or we so would have been kicked of the plane for carrying on environmental weapons. She read crazy early and finished the Little House series on her own the summer before she started kindergarten. She potty trained relatively easily. She's a klutz of epic proportions and a geek to go with it. She has a heart of gold and has been old since the day she was born.
Today she is 14. FOURTEEN. I have no idea how that happened. She is a marvelous young woman. I am so incredibly proud to call her my daughter.
She has a mind of her own, this young woman who is now my daughter. She has a black and white definition of right and wrong. She wants to save the world and all of the children in it, especially those who have special needs or circumstances. My love affair with this amazing creature began 14 years ago and has only increased over time. She got her daddy's brain and writing ability. She is so his child, it is not even funny. To either one of them, the "Great Missing Nintendo DS Mystery of 2008" could just be any given Tuesday. As is common with crazy smart people, she is also a flake of epic proportions.
I wish I could take credit for it and say she is the amazing kid she is today because I am the best mother ever to punch out an anesthesiologist. I can't take though. She came out this way.
Baby, the apron strings have to get longer and longer the older you get, but rest assured my heart strings hold you just as tight as the day you and the fireworks celebrated yours and America's birthday back in 1994. Thank you for being my baby girl, no matter how old you get. Thank you for the fact that even at 14 you still don't get offended when I call you "bear" even in front of your friends. Thank you for crying with me at just the right spot in "Steel Magnolias." Thank you for trusting me and thinking I still have answers. For the gift that is my oldest daughter, Alannah Louise, I say thank you every single day. I love you, bear. Happy Birthday!
Wednesday, July 2, 2008
It's all good
I could not have asked for more. I was so nervous about how Mandy would handle the new clinic again. She went for a finger stick only a week ago and was a mess. We talked a whole lot about how some things might looks different(remember the melt down over the different finger stick needle a few months ago?)but that even if they looked differnt they would feel the same. She stepped right up and did GREAT!
It started on a good note. At our previous clinic, she had to do a finger stick and then have her port accessed. Mandy was THRILLED to find out she had no finger stick here!! SCORE!! That was a great way to get the ball rolling. She reports though the port access needle looked different that it hurt less. Well alrighty, then.
We premedicated with Benadryl and Hydrocortisone and had no allergic reaction. Woohoo!!! The steroid kicked in and the hunger followed. She single handedly filled the trash can in the infusion room. It looked like remains of a Frat party minus the beer cans. She ate her way through a full bag of apple dippers and a few chicken nuggets from McDonalds. Then she moved on...she ate three packs of M&M's, a small can of Pringles, a granola bar, a Pixie Stick, a bag of Cheez Its and a bag of animal crackers. I swear it was more than she has eaten since she started treatment, TOTAL! Not exactly healthy cravings, but at this point anything that gets calories in her makes me happy! She reminded me of the kids book, "The Very Hungry Caterpillar."
Jamie and Kyleen came from the Children's Cancer Center to say hello and drop off something. How incredibly awesome are they?! Mandy was happy to see them and immediately asked them to accompany her to the vending machine to replenish her supply of food. Poor ladies didn't know what they were getting into! We were walking back to the infusion room and Kyleen looks at me and says, "Have a few steroids today did we?" Uh, yea. Apparently. Honestly, she has lost 10% of her body weight since starting treatment, I was thrilled to see her eating that much of anything!
So, a roaring success. She was so brave and very herself. She worked through her nerves with a smile and a fist full of junk food. No allergic reaction, which is FABULOUS! It was a tremendously long day. We were at clinic from 9 am till 6 pm, but I could not have asked more from her. It was a tough day and she came through it with flying colors. All chemo days will be like that from now on, long days. The nurses were all great with her and Mandy really liked her nurse today, Sonya. She was a doll and could not have been better with Mandy's anxiety and put her at ease easily. We get to meet the neuro-oncologist next week.
So, there ya go. I get all worked up and it all went as smoothly as I could've dared hope for.
Thanks to all for the good wishes and thoughts and prayers for a nonallergic, smooth, easy transition day today! You guys rock!
Love to all~
It started on a good note. At our previous clinic, she had to do a finger stick and then have her port accessed. Mandy was THRILLED to find out she had no finger stick here!! SCORE!! That was a great way to get the ball rolling. She reports though the port access needle looked different that it hurt less. Well alrighty, then.
We premedicated with Benadryl and Hydrocortisone and had no allergic reaction. Woohoo!!! The steroid kicked in and the hunger followed. She single handedly filled the trash can in the infusion room. It looked like remains of a Frat party minus the beer cans. She ate her way through a full bag of apple dippers and a few chicken nuggets from McDonalds. Then she moved on...she ate three packs of M&M's, a small can of Pringles, a granola bar, a Pixie Stick, a bag of Cheez Its and a bag of animal crackers. I swear it was more than she has eaten since she started treatment, TOTAL! Not exactly healthy cravings, but at this point anything that gets calories in her makes me happy! She reminded me of the kids book, "The Very Hungry Caterpillar."
Jamie and Kyleen came from the Children's Cancer Center to say hello and drop off something. How incredibly awesome are they?! Mandy was happy to see them and immediately asked them to accompany her to the vending machine to replenish her supply of food. Poor ladies didn't know what they were getting into! We were walking back to the infusion room and Kyleen looks at me and says, "Have a few steroids today did we?" Uh, yea. Apparently. Honestly, she has lost 10% of her body weight since starting treatment, I was thrilled to see her eating that much of anything!
So, a roaring success. She was so brave and very herself. She worked through her nerves with a smile and a fist full of junk food. No allergic reaction, which is FABULOUS! It was a tremendously long day. We were at clinic from 9 am till 6 pm, but I could not have asked more from her. It was a tough day and she came through it with flying colors. All chemo days will be like that from now on, long days. The nurses were all great with her and Mandy really liked her nurse today, Sonya. She was a doll and could not have been better with Mandy's anxiety and put her at ease easily. We get to meet the neuro-oncologist next week.
So, there ya go. I get all worked up and it all went as smoothly as I could've dared hope for.
Thanks to all for the good wishes and thoughts and prayers for a nonallergic, smooth, easy transition day today! You guys rock!
Love to all~
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