Yesterday was the day. Eve's last chemo day. Hip hip hooray! It was finally over with, although much more anti-climatic than I had anticipated. There was no ticker-tape parade, no high fives with the doctors, no straight answers to my questions.
Showing posts with label chemo. Show all posts
Showing posts with label chemo. Show all posts
Tuesday, May 11, 2010
Monday, April 19, 2010
The countdown begins.
Long story, extremely short version:
Surgery to repair port- done.
Stuff Eve full of food because she wakes up starving- done.
Chemo- done.
Recovering from yesterday- almost done. Wake me up before the next chemo.
4 down, 1 to go.
Surgery to repair port- done.
Stuff Eve full of food because she wakes up starving- done.
Chemo- done.
Recovering from yesterday- almost done. Wake me up before the next chemo.
4 down, 1 to go.
Tuesday, March 30, 2010
Do-overs
The weekend Eve was diagnosed with cancer, we were supposed to take the family on a trip to visit Matt's grandmother in South Carolina. Needless to say, we canceled our hotel reservation and checked into Motel Duke instead.
Five months later, we got up the courage to let Eve leave the house, and we embarked upon our trip to Greenville. We packed lots of hand sanitizer, Clorox wipes, and our own food (to avoid going into any fast food restaurants and picking up uninvited guests of the germ variety). Matt and I sanitized the hotel room as best as we could and hoped for the best.
After arriving at Grandma's apartment, we decided to take the kids into the courtyard and let them run around and get some fresh air. Matt's grandma lives in a retirement community, so when anyone under the age of 65 appears, we stick out like sore thumbs. That, and the speed at which the kids move must appear Mach-like compared to the residents.
I was holding Natalie when a resident approached us. She said, "Is this the little girl who was in the dining room today?" No, ma'am. We just got here a few minutes ago. We haven't gotten a chance to get to the dining room yet.
Pleasant-enough resident: "Let me look at her and make sure it's not her." So either A) she just didn't trust me or B) the little girl in the dining room had done something so awful that this woman believed I must obviously be trying to conceal our identities. After determining my daughter was not the same girl, the woman added, "You can't go to the dining room now; it's closed. Supper is already over."
This was at 5:00, by the way.
No worries about that. We headed over to Matt's uncle's house where his aunt fed the kids pizza, juice, Poptarts, and cupcakes. Then they almost cried to the heavens when Aunt Karen gave them Easter bags filled with candy! Oh, what to eat first? It was like vampires at a blood bank. We let Nat eat half of her chocolate bunny, and made her save the rest for later. Unfortunately for Peter Cottontail, there was some sort of accident, and shards of milk chocolate rabbit laid inside the bag. Natalie identifed the remains and said a few kind words, something along the lines of, HOW COULD YOU DO THAT TO MY BUNNY?!? in Matt's general direction. The next evening, Aunt Karen bought Nat a new chocolate bunny and all was well in the universe. They also received their first fart toys. It was far more exciting than I can put into words. The children are already asking to go visit Uncle Steve and Aunt Karen again so they can "toot and eat candy."
I only wish we could have taken this dog kennel home. It was a good place to put them when they were crashing and burning from the sugar rush. It also makes me question the money spent on a double bed and crib at the hotel.
Today, Eve and I returned to Duke, fingers crossed that her ANC would be high enough to get chemo. Nurse Brooke let Eve assemble everything they needed for a port access. As cute as it is, it's sad that my child knows which test tubes and which dressings she needs to pull out of the cart.
Lucky for Eve, her ANC came back at 1144. Not a great place to start knocking it down again, but it will work. Counts, check. Chemo, check. De-access, check. It was a relatively short day for us- only a 5-hour round trip to Duke and back. Now she is enjoying a nice litle Zofran nap.
3 down, 2 to go.
As soon as I walked in the door, the telephone rang. "Hello, Mrs. Griffith? I am calling from the Kids Wish Foundation. We grant wishes to terminally ill children." [Insert dramatic pause here where I stopped breathing because I thought someone knew something about Eve that I didn't know.]
"Can we count on your support this year while we help grant these children their wish?"
Five months later, we got up the courage to let Eve leave the house, and we embarked upon our trip to Greenville. We packed lots of hand sanitizer, Clorox wipes, and our own food (to avoid going into any fast food restaurants and picking up uninvited guests of the germ variety). Matt and I sanitized the hotel room as best as we could and hoped for the best.
After arriving at Grandma's apartment, we decided to take the kids into the courtyard and let them run around and get some fresh air. Matt's grandma lives in a retirement community, so when anyone under the age of 65 appears, we stick out like sore thumbs. That, and the speed at which the kids move must appear Mach-like compared to the residents.
I was holding Natalie when a resident approached us. She said, "Is this the little girl who was in the dining room today?" No, ma'am. We just got here a few minutes ago. We haven't gotten a chance to get to the dining room yet.
Pleasant-enough resident: "Let me look at her and make sure it's not her." So either A) she just didn't trust me or B) the little girl in the dining room had done something so awful that this woman believed I must obviously be trying to conceal our identities. After determining my daughter was not the same girl, the woman added, "You can't go to the dining room now; it's closed. Supper is already over."
This was at 5:00, by the way.
No worries about that. We headed over to Matt's uncle's house where his aunt fed the kids pizza, juice, Poptarts, and cupcakes. Then they almost cried to the heavens when Aunt Karen gave them Easter bags filled with candy! Oh, what to eat first? It was like vampires at a blood bank. We let Nat eat half of her chocolate bunny, and made her save the rest for later. Unfortunately for Peter Cottontail, there was some sort of accident, and shards of milk chocolate rabbit laid inside the bag. Natalie identifed the remains and said a few kind words, something along the lines of, HOW COULD YOU DO THAT TO MY BUNNY?!? in Matt's general direction. The next evening, Aunt Karen bought Nat a new chocolate bunny and all was well in the universe. They also received their first fart toys. It was far more exciting than I can put into words. The children are already asking to go visit Uncle Steve and Aunt Karen again so they can "toot and eat candy."
I only wish we could have taken this dog kennel home. It was a good place to put them when they were crashing and burning from the sugar rush. It also makes me question the money spent on a double bed and crib at the hotel.
Today, Eve and I returned to Duke, fingers crossed that her ANC would be high enough to get chemo. Nurse Brooke let Eve assemble everything they needed for a port access. As cute as it is, it's sad that my child knows which test tubes and which dressings she needs to pull out of the cart.
Lucky for Eve, her ANC came back at 1144. Not a great place to start knocking it down again, but it will work. Counts, check. Chemo, check. De-access, check. It was a relatively short day for us- only a 5-hour round trip to Duke and back. Now she is enjoying a nice litle Zofran nap.
3 down, 2 to go.
As soon as I walked in the door, the telephone rang. "Hello, Mrs. Griffith? I am calling from the Kids Wish Foundation. We grant wishes to terminally ill children." [Insert dramatic pause here where I stopped breathing because I thought someone knew something about Eve that I didn't know.]
"Can we count on your support this year while we help grant these children their wish?"
Friday, March 26, 2010
Aww, Chemosabe.
First things first: the chandelier is fixed. The washing machine appears to be working. Our van had a light come on that would not go away, so that's being repaired today. And Eve still has cancer. Good, you're all caught up!
('Cause nothing shouts HAPPY RESURRECTION, JESUS! like decapitated bunnies.)
Still 2 down, 3 to go.
We rode in our 1997 Nissan Sentra out to Duke, which gets smaller each time I get inside. I have become reliant on the DVD player in our minivan, and was at a loss today when Eve kept crying in the backseat of the car. Matt put it ever-so-gently when he said, "Do you know how to calm your child down, or do you only know how to aggravate her?"
Eve didn't make counts today, so no chemo. Her ANC was in the 400s, and it needs to be at least 750 to get zee drugs. We will try again on Tuesday. But it's cool, I had nothing else to do today but go to Duke. At least next week I'll be able to put on Kai-Lan to drown out the screams on the way out there.
While we were at clinic, Natalie and Daniel were at preschool participating in general merriment. Nat and I made our annual Griffith '70s Easter bunny head cakes last night to send into school for their parties:
('Cause nothing shouts HAPPY RESURRECTION, JESUS! like decapitated bunnies.)Still 2 down, 3 to go.
Thursday, March 4, 2010
Ni hao, Eve!
Eve's latest obsession is Ni Hao, Kai-Lan! For those of you not in-the-know, Kai-lan is a Chinese Dora who cavorts with emotionally immature animals. She teaches kids practical words you can use on your next trip to China, like "hello" and "dinosaur." What would make this obsession suck slightly less would be to actually have cable television and not just a DVD with the same four episodes on it. But, in perspective, it's not cancer, which sucks infinitely more than most things besides Barney.
Ni hao, hem-onc! Did you miss us?
Eve was understandably much happier to be entering the children's center instead of the rad-onc side. The big fish tank at the entrance was apparently a sight for sore eyes. Eve found the fish of her dreams, gave him a big kiss and a hug through the thick glass, and then started conversing with him. "But why, fish? Why are you swimming in circles?" And the fish opened wide and began to mouth his answer. Unfortunately I could not hear it, but whatever he said seemed to satisfy Eve.
You gotta hand it to all those fish in the tank talking to themselves. They really seem to be having some deep conversations. After all, if you can't talk to yourself, who can you talk to?
Upstairs to get accessed. The port is really mean looking lately; the Emla turns the site fire engine-red and all kinds of scary bumps appear. Six days in a row of accessing it for radiation has not done the skin any favors. No time to get too worried about that, though. Two minutes to get downstairs for an echocardiogram!
Well, maybe there was some time since we got to sit in the waiting room for a good 25 minutes. The radiology reception area is right across from the gift shop, which is home to buckets full of loose candy. At the eye-level of a two-year-old.
Strangers will buy you candy if you are bald.
The waiting area is full of things that have the potential to be fun. Like, dollhouses and train tracks. The only way to reach said potential is to actually have trains or dolls and furniture for said toys. I do not like the qi of the waiting room lately. The empty dollhouse has given up hope. Please buy more toys for the bald kids, Duke.
Eve finds the echo quite relaxing. She lies back, arms behind her head, and doesn't move for the next ten minutes. In fact, slap a pair of bad sunglasses on her and it could have been Weekend at Bernie's 2. I can only assume that everything is a-okay with her heart since the tech did not rush out of the room to find a doctor. I am beginning to learn this is a good sign. Eve gets a Beanie Baby for her superior chillaxing skillz and we are sent on our way.
Back upstairs for chemo. Beanie Baby goes overboard, ending his short life. We are happy no one was under the kamikaze bear. His body lays on the first floor next to the empty dollhouse.
Counts look good. Chemo is ordered. We floor the docs with news of the new bilateral case. Docs still maintain Wilms is not contagious.
To pass the time while we wait for the pharmacy to make up the poison, Dr. Wechsler shows us pictures on the internet of tumors cut out of patients. I ask for him to find out if the pathologist took pictures of Eve's kidney. If I can get my hands on a picture, we will have very interesting Christmas cards this year, for sure.
And we go back to the port once the internet is exhausted from my morbid curiosity. The docs think it's just irritation from all the accessing and tell us to watch for pus. Pus Watch 2010 is on.
Eve falls asleep in my arms. The nurse cannot get a blood return. Oops! The needle has come out of her port. Thankfully Eve sleeps through this and is not screaming in pain. Those nasty bumps must have been hypnotizing since we all stared at them and did not notice the needle coming out of place.
Eve wakes up during her Zofran drip and we turn on Kai-Lan. Seriously, these animal friends of hers have deep-seated anger management issues. I can get past the sordid tiger if he helps Eve stay still for the drugs, though. You don't want your kid leading a Zumba class while she's hooked up to a few feet of IV tubing. Xie xie, Kai-lan.
2 down, 3 to go.
Ni hao, hem-onc! Did you miss us?
Eve was understandably much happier to be entering the children's center instead of the rad-onc side. The big fish tank at the entrance was apparently a sight for sore eyes. Eve found the fish of her dreams, gave him a big kiss and a hug through the thick glass, and then started conversing with him. "But why, fish? Why are you swimming in circles?" And the fish opened wide and began to mouth his answer. Unfortunately I could not hear it, but whatever he said seemed to satisfy Eve.
You gotta hand it to all those fish in the tank talking to themselves. They really seem to be having some deep conversations. After all, if you can't talk to yourself, who can you talk to?
Upstairs to get accessed. The port is really mean looking lately; the Emla turns the site fire engine-red and all kinds of scary bumps appear. Six days in a row of accessing it for radiation has not done the skin any favors. No time to get too worried about that, though. Two minutes to get downstairs for an echocardiogram!
Well, maybe there was some time since we got to sit in the waiting room for a good 25 minutes. The radiology reception area is right across from the gift shop, which is home to buckets full of loose candy. At the eye-level of a two-year-old.
Strangers will buy you candy if you are bald.
The waiting area is full of things that have the potential to be fun. Like, dollhouses and train tracks. The only way to reach said potential is to actually have trains or dolls and furniture for said toys. I do not like the qi of the waiting room lately. The empty dollhouse has given up hope. Please buy more toys for the bald kids, Duke.
Eve finds the echo quite relaxing. She lies back, arms behind her head, and doesn't move for the next ten minutes. In fact, slap a pair of bad sunglasses on her and it could have been Weekend at Bernie's 2. I can only assume that everything is a-okay with her heart since the tech did not rush out of the room to find a doctor. I am beginning to learn this is a good sign. Eve gets a Beanie Baby for her superior chillaxing skillz and we are sent on our way.
Back upstairs for chemo. Beanie Baby goes overboard, ending his short life. We are happy no one was under the kamikaze bear. His body lays on the first floor next to the empty dollhouse.
Counts look good. Chemo is ordered. We floor the docs with news of the new bilateral case. Docs still maintain Wilms is not contagious.
To pass the time while we wait for the pharmacy to make up the poison, Dr. Wechsler shows us pictures on the internet of tumors cut out of patients. I ask for him to find out if the pathologist took pictures of Eve's kidney. If I can get my hands on a picture, we will have very interesting Christmas cards this year, for sure.
And we go back to the port once the internet is exhausted from my morbid curiosity. The docs think it's just irritation from all the accessing and tell us to watch for pus. Pus Watch 2010 is on.
Eve falls asleep in my arms. The nurse cannot get a blood return. Oops! The needle has come out of her port. Thankfully Eve sleeps through this and is not screaming in pain. Those nasty bumps must have been hypnotizing since we all stared at them and did not notice the needle coming out of place.
Eve wakes up during her Zofran drip and we turn on Kai-Lan. Seriously, these animal friends of hers have deep-seated anger management issues. I can get past the sordid tiger if he helps Eve stay still for the drugs, though. You don't want your kid leading a Zumba class while she's hooked up to a few feet of IV tubing. Xie xie, Kai-lan.
2 down, 3 to go.
Thursday, February 11, 2010
Planning your life in three-week increments.
The break from chemo was nice. Very nice. The only thing that would have made the 3-week chemo-cation any better would have been not being in the hospital recovering from a nephrectomy. But, I'm still thankful for the small breaks we get.
Today began the first of five more chemo treatments for Eve, each three weeks apart:
Today began the first of five more chemo treatments for Eve, each three weeks apart:
- February 11, Vincristine & Dactinomycin
- March 5, Vincristine & Doxorubicin
- March 26, Vincristine & Dactinomycin
- April 16, Vincristine & Doxorubicin
- May 7, Vincristine & Dactinomycin
So she gets chemo, has a week until her blood counts drop, spends a week with low counts, then they slowly get back up until BAM! Let's do it again.
1 down, 4 to go.
In between having Eve's blood drawn and getting chemo, we hauled hiney over to radiation-oncology at the ominous Clinics. The doctor broke everything down for us. Some interesting highlights:
- When you radiate the vertebrae, the growth will be markedly slower than the unradiated vertebrae. So, the radiation specialists make a point to radiate across the entire vertebrae rather than just hitting one side. This will prevent orthopaedic issues that occur when one side is growing and the other is not. Better to stop growth evenly and be short-torsoed (is that even a word?) than to have scoliosis because you didn't get your spine evenly radiated.
- The muscles that support the spine will probably not grow as well after radiation. You can't evenly radiate that like you can the vertebrae, though. This has been linked to some orthopaedic problems. That's just something that will have to suck a lil' bit.
- The bottom of the liver will be in the radiation field. There should be plenty of liver that isn't affected, though. But hey, at least that's an organ that can regenerate if some scatter radiation does more damage than predicted!
- The intestines will be hit. Radiation, like major abdominal surgery, leaves some scar tissue which can lead to bowel obstruction. It could happen tomorrow. It could happen thirty years from now. We will have to be careful not to dismiss any stomach discomfort as a garden-variety GI bug.
- The reproductive machine is still low in her pelvis, so it will not be in the radiation field. Which means Eve can grow up, find herself an Adam, and be fruitful and mulitply with no issues from this whole Wilms soap opera.
We have a mapping session Monday morning at 7:45. The mapping session is a simulation which will help the docs plan how to turn Eve into a Glo-Worm. It is our understanding that the folks down in radiation-oncology are punctual people, so I can only pray this is true since we will all be NPO. (Eve will need anesthesia to ensure she is completely still.) Radiation therapy will begin next Thursday, and will last for 6-7 consecutive business days.
That's a lot of Downstairs Eves.
Tuesday, January 19, 2010
I have a dream.
We were shocked to hear the news this morning.
Eve's DMSA renal scan showed that her right kidney is putting up a hell of a fight. While most (or if we're being honest, EVERYONE) thought that the right kidney would have next to no function, it seems that it is carrying 44% of the workload, while the left has 56%. Not too shabby.
The rest of the report reads as follows:
"There is mildly heterogeneous distribution of radiotracer in the bilateral kidneys. There are no major focal photopenic areas noted in the left kidney. The right kidney demonstrates a prominient photopenic defect from the mid aspect of the kidney to the superior pole. An exophytic appearing curvilinear band of tracer activity is noted medially adjacent to the photopenic defect in the superior pole, likely representing some renal parenchyma at the periphery of the known Wilms tumor. In addition, there is a somewhat prominent photopenic defect also noted within the lateral aspect of the interpolar region of the right kidney."
Yeah, I had to look a lot of those words up, too. I *think* this means that the grey stuff we saw in the scan was nonfunctioning, tumorous kidney cells, in the top half of the right kidney. But I'm no radiologist. Just an overtired parent who is trying hard not to unleash her fury on the Sears repairman, should he choose to show up.
It is now 9:27 p.m. We called Sears on Sunday the 10th to schedule an appointment for our leaky washing machine and the first one they had available was today, sometime between 1 and 5 p.m. So, perhaps naively, I waited here from 1 to 5. At 5:15, I called Sears back to ask where my repairman was. I'm sorry you are going through this, Ms. Griffith. Incorrect. You are not sorry and we both know it. It's not our fault; the customer ahead of you had a problem that is taking a lot longer than expected. It is absolutely your fault. Stop giving me this crap. It's [un]common courtesy to give someone a phone call if you can't make your FOUR HOUR WINDOW. He should arrive a litle bit after 6. So you're telling me I stayed inside on this beautiful afternoon waiting for you guys to not show up and now I need to cancel my plans this evening to wait some more? I'm sorry for this inconvenience, ma'am. Stop saying you're sorry! Sorry doesn't do anything. This inconvenience better be reflected in our bill. Umm...I will have the repairman call you.
I know when someone is just trying to get me off the phone.
7:45 rolls around. I asked Matt to call Sears back and see what's going on. We are still on the list to get our machine serviced, but have not heard from the repairman. Matt asks Sears to cancel the appointment and reschedule for tomorrow morning. I am a bit disappointed I won't be here to give my lecture on respecting people's time, but I will be sure to give my mother-in-law instructions to use her cable-television voice. And if anyone has heard my mother-in-law threaten the poor soul on the other end of the Time Warner line if they dare to transfer her one more time or try to sell her any more crap she doesn't want, then you would be shaking in your Uggs just a bit, too.
The man on the line with Sears again apologizes for Matt's circumstances. He says the repairman will call tonight about the appointment for tomorrow. I am not dumb enough to be waiting for this call. Instead, I am channeling all my negative energy into figuring out what the word photopenic means. I am under the illusion that since the answer is not on the first page of Google when I type in "What is photopenic defect?", it must be something of a secret password that is reserved only for radiologists or perhaps freemasons, and now I really need to know. (No dice at the time of posting, though.)
I had the bright idea this morning to take Daniel with us to chemo, because there was no school today. Eve couldn't go to the clinic yesterday since they were closed for MLK day. Because maybe he had a dream that kids with cancer just wanted a day off.
We arrived, and Daniel thought he was in the world's biggest playroom. He would have happily yanked toys from pale, bald kids left and right if there weren't two of us on duty to make sure he didn't get overzealous. It was quite a busy day, and we spent a good portion of the morning in the waiting room. This was clearly Dan's favorite spot. The exam rooms have no toys.
While Nat was very interested in Eve's port access and helped to push in some of the saline and heparin flushes when we brought her with us on Christmas Eve, Dan could care less.
Matt to Daniel: Daniel, look! The nurse is going to give Eve her medicine!
Daniel to Nurse: You're in my way. I can't see Max and Ruby.
Oh well. We tried.
12 down, 0 to go. The waiting game begins.
I think I might have set myself up for this. The first six weeks of chemo flew by. The second six weeks have dragged. I predicted as such the night in December we got the phone call that Eve would need more chemo before surgery. And I know all clocks in Duke will slow tomorrow morning because Eve will be...
Wait for it...
NPO.
We will get to the hem-onc clinic at 9:00 to have Eve's port accessed. Then we supposedly will have an MRI at 10:00 and a CT at noon. But my watch hasn't figured out Duke time yet, so we will see how long before Downstairs Eve re-emerges.
The Sears man better pray he doesn't run into me tomorrow.
Eve's DMSA renal scan showed that her right kidney is putting up a hell of a fight. While most (or if we're being honest, EVERYONE) thought that the right kidney would have next to no function, it seems that it is carrying 44% of the workload, while the left has 56%. Not too shabby.
The rest of the report reads as follows:
"There is mildly heterogeneous distribution of radiotracer in the bilateral kidneys. There are no major focal photopenic areas noted in the left kidney. The right kidney demonstrates a prominient photopenic defect from the mid aspect of the kidney to the superior pole. An exophytic appearing curvilinear band of tracer activity is noted medially adjacent to the photopenic defect in the superior pole, likely representing some renal parenchyma at the periphery of the known Wilms tumor. In addition, there is a somewhat prominent photopenic defect also noted within the lateral aspect of the interpolar region of the right kidney."
Yeah, I had to look a lot of those words up, too. I *think* this means that the grey stuff we saw in the scan was nonfunctioning, tumorous kidney cells, in the top half of the right kidney. But I'm no radiologist. Just an overtired parent who is trying hard not to unleash her fury on the Sears repairman, should he choose to show up.
It is now 9:27 p.m. We called Sears on Sunday the 10th to schedule an appointment for our leaky washing machine and the first one they had available was today, sometime between 1 and 5 p.m. So, perhaps naively, I waited here from 1 to 5. At 5:15, I called Sears back to ask where my repairman was. I'm sorry you are going through this, Ms. Griffith. Incorrect. You are not sorry and we both know it. It's not our fault; the customer ahead of you had a problem that is taking a lot longer than expected. It is absolutely your fault. Stop giving me this crap. It's [un]common courtesy to give someone a phone call if you can't make your FOUR HOUR WINDOW. He should arrive a litle bit after 6. So you're telling me I stayed inside on this beautiful afternoon waiting for you guys to not show up and now I need to cancel my plans this evening to wait some more? I'm sorry for this inconvenience, ma'am. Stop saying you're sorry! Sorry doesn't do anything. This inconvenience better be reflected in our bill. Umm...I will have the repairman call you.
I know when someone is just trying to get me off the phone.
7:45 rolls around. I asked Matt to call Sears back and see what's going on. We are still on the list to get our machine serviced, but have not heard from the repairman. Matt asks Sears to cancel the appointment and reschedule for tomorrow morning. I am a bit disappointed I won't be here to give my lecture on respecting people's time, but I will be sure to give my mother-in-law instructions to use her cable-television voice. And if anyone has heard my mother-in-law threaten the poor soul on the other end of the Time Warner line if they dare to transfer her one more time or try to sell her any more crap she doesn't want, then you would be shaking in your Uggs just a bit, too.
The man on the line with Sears again apologizes for Matt's circumstances. He says the repairman will call tonight about the appointment for tomorrow. I am not dumb enough to be waiting for this call. Instead, I am channeling all my negative energy into figuring out what the word photopenic means. I am under the illusion that since the answer is not on the first page of Google when I type in "What is photopenic defect?", it must be something of a secret password that is reserved only for radiologists or perhaps freemasons, and now I really need to know. (No dice at the time of posting, though.)
I had the bright idea this morning to take Daniel with us to chemo, because there was no school today. Eve couldn't go to the clinic yesterday since they were closed for MLK day. Because maybe he had a dream that kids with cancer just wanted a day off.
We arrived, and Daniel thought he was in the world's biggest playroom. He would have happily yanked toys from pale, bald kids left and right if there weren't two of us on duty to make sure he didn't get overzealous. It was quite a busy day, and we spent a good portion of the morning in the waiting room. This was clearly Dan's favorite spot. The exam rooms have no toys.
While Nat was very interested in Eve's port access and helped to push in some of the saline and heparin flushes when we brought her with us on Christmas Eve, Dan could care less.
Matt to Daniel: Daniel, look! The nurse is going to give Eve her medicine!
Daniel to Nurse: You're in my way. I can't see Max and Ruby.
Oh well. We tried.
12 down, 0 to go. The waiting game begins.
I think I might have set myself up for this. The first six weeks of chemo flew by. The second six weeks have dragged. I predicted as such the night in December we got the phone call that Eve would need more chemo before surgery. And I know all clocks in Duke will slow tomorrow morning because Eve will be...
Wait for it...
NPO.
We will get to the hem-onc clinic at 9:00 to have Eve's port accessed. Then we supposedly will have an MRI at 10:00 and a CT at noon. But my watch hasn't figured out Duke time yet, so we will see how long before Downstairs Eve re-emerges.
The Sears man better pray he doesn't run into me tomorrow.
Tuesday, January 12, 2010
Meet Downstairs Eve.
The three letters that make my heart race more than any other are as follows:
N
P
O.
Put them together and I throw up in my mouth just a little.
NPO (nil per os) is Latin for best of luck not sticking a fork in your eye today, sucka!
Yesterday we arrived at the clinic a bit before 8:00 in order for Eve to have her port accessed and get her blood work done. We headed downstairs to Nuclear Medicine so Eve could have an injection of radioactive material for her DMSA renal scan. The results of the scan will tell us how much of Eve's kidneys are actually functioning. So, the DMSA is the material that was injected into Eve, but apparently is so long that none of the doctors could tell me what the letters actually stand for.
We had an 8:30 appointment to get the injection, which would need time to work it's way through to the kidneys, so the scan was scheduled for 10:30. Which was just perfect when the injection wasn't given until 9:50. And by perfect, I mean I could have stuck a fork in someone else's eye.
Since the scan takes 30-40 minutes of the patient lying completely still, Eve would have to be sedated. And you mustn't eat or drink (NPO) before sedation, lest you want to puke up while you sleep and choke to death. So, Eve was slowly turning into Downstairs Eve while her scan got pushed back to 11:20 on account of the material needing 90 minutes to work it's way down to Wilmsville.
Upstairs Eve is far nicer than Downstairs Eve. Upstairs Eve is very cooperative and friendly. Downstairs Eve spews out pea soup while her head rotates 360 degrees. It's not her fault; it's just that Eve does very well when she's upstairs sucking on lollipops in the hem-onc clinic. And doesn't like to be starved and sedated downstairs in radiology.
Matt and I decided to be proactive and head back up to the clinic for chemo while we waited the 90 minutes. We had originally planned to take Eve to clinic last Friday for treatment, but just before we were packing up the van to leave, her doctor called and said something along the lines of, It's probably a better idea to wait until Monday to give Eve the Vincristine since she just had it a few days ago.
At least they didn't call while we were on the Durham Freeway. That would have been a whole other post.
Her ANC was 561. No toxicity issues with the previous dose of Vincristine. So, Eve got her chemo before the scan. (11 down, 1 to go!) In retrospect, this was one of the better decisions we as a married couple have made. Giving chemo to Downstairs Eve after the scan would have bordered on sadomasochism. Back down to Nuclear Medicine.
Downstairs Eve did a lot of crying and whimpering for food and/or drink, stickers, movies, shoes on/shoes off, her blanket (which we did not think to bring), and being held in a standing position ONLY. Eve is the single reason my arms have any definition. Yesterday was a very simliar experience to the CT scan I took her to five weeks ago, but this time Matt was with me, so I got to share the pain.
Eve got into the room for her scan and was given some kind of barbituate that seemed to work in about 60 seconds. Seemed being the key word here. Let's put her down on the table...oh wait! She's awake. Let's give her more anesthesia. Ok, she's asleep again...oh, snap! She's still awake. Let's give her some more. Wait, why is she screaming? Oh yes, because in all her thrasing about, the needle has come out of her port and the drugs are burning her under the skin.
So, Eve had her first port re-access, with no magic numbing cream, and was promptly given the max amount of anesthesia she was allowed. And as long as Mommy held her, she stayed still and feigned sleep. And as soon as Mommy tried to move her, she would wake up. Well, only one solution to this problem...
Mommy, lay on the scanner with Eve on your stomach while we take the pics. And don't move.
Dang, this table doesn't even have a place to rest my elbows. I can do this, though. It's only half an hour.
So, basically, this radioactive material has made it's way into Eve's kidneys and there is a special crystal lens that absorbs the radiation that the kidneys are giving off. I'm no doctor, but from my limited vantage point I could see that the left kidney was almost completely neon, and about half of the right seemed to be glowing, as well. Maybe this is indicative of kidney function...I mean, what else could it be? Is it unreasonable to assume that gray kidney = no function and bright green kidney = save me? So yeah, I'm thinking of taking up radiology when this whole oncology pursuit gets old.
Some of you may be disappointed to learn that despite my neon green shirt, I was not, in fact, radioactive.
Anyway, we made it through the whole scan with just a puddle of drool on my chest to show for it. Off to recovery!
It was already nap time and Eve did not care to wake up and eat or drink for the nurse. She woke up crabbier than before she went down, so the nurse suggested we let her go back to sleep in hopes she'd wake up later in a better mood. Well, once again, this was Eve's nap time. She would have slept on my chest in that recovery room until the next morning if we had let her. What we did let her do was sleep for another 20 minutes before asking if we could be discharged.
Downstairs Eve was not pleased waking up in the middle of being buckled into her carseat. She wasn't pleased when we left the parking lot. She still wasn't pleased when we were driving on the freeway. She especially wasn't pleased when we stopped and walked around with her, in a last-resort attempt to calm her down. No, no, no. There was no pleasing Downstairs Eve.
She fell asleep after a good 20 minutes of wailing and whipping around. Enough time for us to make a Taco Bell run before we got home, because honestly, when your child is NPO, you are also NPO. And you really deserve some nachos supreme.
N
P
O.
Put them together and I throw up in my mouth just a little.
NPO (nil per os) is Latin for best of luck not sticking a fork in your eye today, sucka!
Yesterday we arrived at the clinic a bit before 8:00 in order for Eve to have her port accessed and get her blood work done. We headed downstairs to Nuclear Medicine so Eve could have an injection of radioactive material for her DMSA renal scan. The results of the scan will tell us how much of Eve's kidneys are actually functioning. So, the DMSA is the material that was injected into Eve, but apparently is so long that none of the doctors could tell me what the letters actually stand for.
We had an 8:30 appointment to get the injection, which would need time to work it's way through to the kidneys, so the scan was scheduled for 10:30. Which was just perfect when the injection wasn't given until 9:50. And by perfect, I mean I could have stuck a fork in someone else's eye.
Since the scan takes 30-40 minutes of the patient lying completely still, Eve would have to be sedated. And you mustn't eat or drink (NPO) before sedation, lest you want to puke up while you sleep and choke to death. So, Eve was slowly turning into Downstairs Eve while her scan got pushed back to 11:20 on account of the material needing 90 minutes to work it's way down to Wilmsville.
Upstairs Eve is far nicer than Downstairs Eve. Upstairs Eve is very cooperative and friendly. Downstairs Eve spews out pea soup while her head rotates 360 degrees. It's not her fault; it's just that Eve does very well when she's upstairs sucking on lollipops in the hem-onc clinic. And doesn't like to be starved and sedated downstairs in radiology.
Matt and I decided to be proactive and head back up to the clinic for chemo while we waited the 90 minutes. We had originally planned to take Eve to clinic last Friday for treatment, but just before we were packing up the van to leave, her doctor called and said something along the lines of, It's probably a better idea to wait until Monday to give Eve the Vincristine since she just had it a few days ago.
At least they didn't call while we were on the Durham Freeway. That would have been a whole other post.
Her ANC was 561. No toxicity issues with the previous dose of Vincristine. So, Eve got her chemo before the scan. (11 down, 1 to go!) In retrospect, this was one of the better decisions we as a married couple have made. Giving chemo to Downstairs Eve after the scan would have bordered on sadomasochism. Back down to Nuclear Medicine.
Downstairs Eve did a lot of crying and whimpering for food and/or drink, stickers, movies, shoes on/shoes off, her blanket (which we did not think to bring), and being held in a standing position ONLY. Eve is the single reason my arms have any definition. Yesterday was a very simliar experience to the CT scan I took her to five weeks ago, but this time Matt was with me, so I got to share the pain.
Eve got into the room for her scan and was given some kind of barbituate that seemed to work in about 60 seconds. Seemed being the key word here. Let's put her down on the table...oh wait! She's awake. Let's give her more anesthesia. Ok, she's asleep again...oh, snap! She's still awake. Let's give her some more. Wait, why is she screaming? Oh yes, because in all her thrasing about, the needle has come out of her port and the drugs are burning her under the skin.
So, Eve had her first port re-access, with no magic numbing cream, and was promptly given the max amount of anesthesia she was allowed. And as long as Mommy held her, she stayed still and feigned sleep. And as soon as Mommy tried to move her, she would wake up. Well, only one solution to this problem...
Mommy, lay on the scanner with Eve on your stomach while we take the pics. And don't move.
Dang, this table doesn't even have a place to rest my elbows. I can do this, though. It's only half an hour.
So, basically, this radioactive material has made it's way into Eve's kidneys and there is a special crystal lens that absorbs the radiation that the kidneys are giving off. I'm no doctor, but from my limited vantage point I could see that the left kidney was almost completely neon, and about half of the right seemed to be glowing, as well. Maybe this is indicative of kidney function...I mean, what else could it be? Is it unreasonable to assume that gray kidney = no function and bright green kidney = save me? So yeah, I'm thinking of taking up radiology when this whole oncology pursuit gets old.
Some of you may be disappointed to learn that despite my neon green shirt, I was not, in fact, radioactive.
Anyway, we made it through the whole scan with just a puddle of drool on my chest to show for it. Off to recovery!
It was already nap time and Eve did not care to wake up and eat or drink for the nurse. She woke up crabbier than before she went down, so the nurse suggested we let her go back to sleep in hopes she'd wake up later in a better mood. Well, once again, this was Eve's nap time. She would have slept on my chest in that recovery room until the next morning if we had let her. What we did let her do was sleep for another 20 minutes before asking if we could be discharged.
Downstairs Eve was not pleased waking up in the middle of being buckled into her carseat. She wasn't pleased when we left the parking lot. She still wasn't pleased when we were driving on the freeway. She especially wasn't pleased when we stopped and walked around with her, in a last-resort attempt to calm her down. No, no, no. There was no pleasing Downstairs Eve.
She fell asleep after a good 20 minutes of wailing and whipping around. Enough time for us to make a Taco Bell run before we got home, because honestly, when your child is NPO, you are also NPO. And you really deserve some nachos supreme.
Wednesday, January 6, 2010
Refresher Course
Now, you too can be on your way to becoming an oncologist! (Or, at least sound like one.) Impress people at the dentist's office, Jazzercise, and fondue parties with your new vocabulary!
Here's a handy reference guide for those of you who want to know what's going on, but don't want to go back and start from the beginning.
The Treatment Plan we received from Duke:
"The most common way to treat bilateral Wilms tumor is to give two common anti-cancer drugs (chemotherapy with Vincristine and Dactinomycin) to shrink the tumors and then to do surgery to remove the tumor tissue. In some cases, an entire kidney and part of the other kidney are removed. Sometimes radiation therapy (treatment with high energy X-rays) is also done.
"There is some recent evidence that giving one extra drug (total of 3 drugs) may help get rid of the tumor cells while saving the largest amount of normal kidney tissue. This would not be considered 'standard' therapy."
The drugs:
The port:
Eve's port is a long, soft tube (central venous catheter) that was inserted into a large vein that leads into the heart. It is completely implanted under the skin. It is used to take blood, give drugs and IV fluids, and transfuse blood. We put Emla cream over the bump in Eve's chest where the port is to numb the skin before the port is accessed. The port is a blessing and a half, and then some.
Bone Marrow Suppression:
The bone marrow is where white blood cells, red blood cells, and platelets are made before they are released into the bloodstream. Chemotherapy works by blocking cell growth which includes both cancerous and normal cells. This causes low blood counts.
Our home pharmacy:
Scans and tests:
After the surgery:
We wait for the pathology report to come back from the tumors. The doctors need to see how the tumors responded to chemotherapy in order to decide what the therapy post-surgery will be. There will definitely be more chemo and perhaps some radiation.
I hope you got all that. There will be a test in the morning, folks.
Here's a handy reference guide for those of you who want to know what's going on, but don't want to go back and start from the beginning.
The Treatment Plan we received from Duke:
"Your child has been diagnosed with Wilms tumor. Wilms tumor is a type of cancer that occurs in the cells of the kidney. Your child's disease is considered higher risk because there are tumors in both kidneys (bilateral Wilms tumor).
"The most common way to treat bilateral Wilms tumor is to give two common anti-cancer drugs (chemotherapy with Vincristine and Dactinomycin) to shrink the tumors and then to do surgery to remove the tumor tissue. In some cases, an entire kidney and part of the other kidney are removed. Sometimes radiation therapy (treatment with high energy X-rays) is also done.
"There is some recent evidence that giving one extra drug (total of 3 drugs) may help get rid of the tumor cells while saving the largest amount of normal kidney tissue. This would not be considered 'standard' therapy."
The drugs:
- Vincristine Likely side effects include hair loss, reversible neuropathy, and constipation.
- Dactinomycin Likely side effects include nausea, vomiting, hair loss, and a drop in white blood cells, red blood cells, and platelets.
- Doxorubicin Likely side effects include nausea, vomiting, hair loss, a drop in white blood cells, red blood cells, and platelets, and damage to the heart muscle.
The port:
Eve's port is a long, soft tube (central venous catheter) that was inserted into a large vein that leads into the heart. It is completely implanted under the skin. It is used to take blood, give drugs and IV fluids, and transfuse blood. We put Emla cream over the bump in Eve's chest where the port is to numb the skin before the port is accessed. The port is a blessing and a half, and then some.
Bone Marrow Suppression:
The bone marrow is where white blood cells, red blood cells, and platelets are made before they are released into the bloodstream. Chemotherapy works by blocking cell growth which includes both cancerous and normal cells. This causes low blood counts.
- White blood cells (WBC) fight infection.
- Red blood cells (RBC) carry oxygen to the body's tissue.
- Platelets (Plt.) prevent bleeding.
For anyone who likes to geek out to this type of thing, the equation is:
WBC x (%Neutrophils +%Bands) = ANC
Although Matt likes stuff like this, I am happy the doctors at Duke always do the math for me on chemo days. On the days I have to take Eve into her pediatrician's office for those in-between chemo blood checks, I call Matt on my way home and rattle off some numbers and let him compute to his heart's content. He and Texas Instruments go waaaaay back...Our home pharmacy:
- Septra, twice daily, three days a week, to prevent pneumocystis pneumonia.
- Miralax, daily, to prevent constipation.
- Lisinopril, daily, to regulate blood pressure.
- Zofran, thrice daily, for 48 hours following Doxorubicin and Dactinomycin administration to prevent nausea.
- Reglan, to prevent nausea if Zofran doesn't work.
- Benadryl, to be given 30 minutes before Reglan.
- Emla, to numb port site 30 minutes before access.
- Flintstones Vitamins, because it can't hurt, right?
Scans and tests:
- Complete Blood Count (CBC) gives us the number of WBC, RBC, and Plt. This test is done before chemo and a few days after chemo.
- Differential indicates the percentage of each sub-type of WBC. This is done with the CBC.
- Ultrasound (U/S) uses sound waves to detect changes or abnormalities. Eve has had two of these; the first time showed the presence of tumors and the second time showed how much they were shrinking from the chemotherapy.
- X-ray is electromagnetic radiation. Eve had an x-ray done after her port surgery to make sure it was placed correctly.
- CT Scan is an x-ray test with a special machine that rotates around the patient, giving cross-section pictures of the body. For Eve, this provides better imaging of the kidneys and tumors than an MRI. She is sedated for these scans so she will be still.
- Magnetic Resonance Imaging (MRI) uses magnetic waves to see inside the body. For Eve, this gives better images of the blood vessels inside of the kidneys which is important for the surgeon. She is sedated for these scans so she will be still.
- Echocardiogram (Echo) is an ultrasound of the heart. Eve has had two echos- once before the start of chemo and another at week 7 to make sure her heart is okay from the Doxorubicin.
- Electrocardiogram (EKG) studies electric signals of the heart. Eve has had one EKG prior to the start of chemo.
After the surgery:
We wait for the pathology report to come back from the tumors. The doctors need to see how the tumors responded to chemotherapy in order to decide what the therapy post-surgery will be. There will definitely be more chemo and perhaps some radiation.
I hope you got all that. There will be a test in the morning, folks.
Monday, January 4, 2010
Why, Santy Claus, Why?
Why are you taking our Christmas tree, why? Oh, Cindy Lou Who, it's because I'm done with Christmas. It's because I love reclaiming my house from that very cluttery holiday. My qi was having a hard time moving around the place with so many pre-lit decorations jutting out from every corner. (And yes, it's also because I'm still a tiny bit bitter about those lights.)It's a brand-new year; it's a brand-new Christy. Waking up a bit later than usual on New Year's Day (like, three hours later) with just as much fog in my head as there was in the air, I resolved to go green in 2010. So I skipped the shower and headed for the Motrin.
The only resolution I've ever kept in the past has been to make our bed every day. Our room could resemble the aftermath of a nuclear explosion, but as long as the bed is made, there is some order left in the universe. I can, at least, have some control over something. And here I am making you believe that I have done this everyday in recent memory, when in fact this morning I was more preoccupied with getting ready for clinic than doing the one-armed bed making dance. (Go ahead, try hospital corners with a small child on your hip!)
Today I just KNEW that Eve's ANC would be too low to get chemo. I mean, I had this feeling in my gut we'd have to spend another two hours in there waiting for someone to come back and tell us she didn't make counts.
We've talked about my instincts before, no?
Her ANC was 1218. All systems go. Doxorubicin, Dactinomycin, Vincristine...bring it!
10 down, 2 to go.
We're so close, I can almost taste it. But of course, you have to wear gloves and a mask and you're really not supposed to taste that stuff. It's poison, after all.
Back to clinic on Friday for more Vincristine, provided Eve doesn't show any more toxicity from the dose she just had today. I did have an appointment with my endocrinologist this Friday, but that can be rescheduled. Wilms trumps diabetes this week.
Me: Hi, I have an appointment for Friday that I need to reschedule.
Them: Sure. The next available appointment I have is for next Friday.
Me: Hmm...that's not going to work. [Chemo day]
Them: The next available appointment after that is Wednesday the 20th.
Me: I can't make that date, either. [MRI and CT scans]
Them: I can fit you in on Monday the 25th.
Me: I think I might have something else going on. [Nephrectomy, anyone?]
I guess I'll call back next month and try again. My phone only holds a charge for so long, you know.
And while needing to reschedule my appointment was good news, because it means that we are tentatively back on schedule with chemo, I still had a pressing matter on my mind- Natalie.
She thinks she gave Eve cancer.
No, sweet girl, you cannot give someone tumors. Why do you think that?
Well, I threw up one night a long time ago and then I gave Eve a kiss.
No, baby. That did not give Eve tumors.
Then who did she get them from?
Oh, boy. I don't even know where to start. How do I explain that cold and flu-sick is different than cancer-sick? Is sick even the right word?
Natalie has caught onto things very quickly. "Eve's medicines that she takes can make her food taste funny to her sometimes, Mommy. That's why she doesn't want to eat that right now. I can eat it, though!" Or, "Eve has a port where she gets chemotherapy to shrink the tumors in her belly." And, "When Eve's numbers get back up to a thousand, she can sleep in my room again!"
Now, how to make her understand you can't catch cancer?
Sunday, December 27, 2009
Blood, pie, and a Calcutta Christmas.
It sure has been busy around here. Not sure why I'm so tired since Santa is the one who did all the hard work...
Thursday was a chemo day for Eve. Natalie was off from preschool, so she joined us on our weekly clinic trip. We left the house at 7:00 a.m. for a 45-minute journey of Natalie saying over and over again, "This is a loooooooooong ride. How many minutes until we get there?"
The ride did feel a bit longer than usual, but then again, we were hauling with us Chatty Cathy, the human egg timer. When it's Christmas Eve and there are no more days left to count down, we have discovered that four-year-olds will switch to minutes. These minutes are measured in millions, thousands, hundreds, and any combination of the three. "Is Santa coming in eight thousand-million-hundred minutes?"
It was nice to have Natalie there with Eve. Having big sis around puts a little more pep in Tiny Tim's step. Entering the Children's Health Center was quite fascinating for Natalie- it certainly made it hard to understand that this was a place where you came when you were sick. It was fabulous! Bright colors, beautiful paintings, toys, toys, and more toys, computers, giant fish tanks, and magic elevators that you can see through. "Is this where you come all the time with Eve, Mommy?" Yes, this is where we come when we take Eve to the doctor. "Why do I have to go to preschool? I want to come here!"
One thing about having cancer on Christmas Eve is that Santa will have already left you some presents at the clinic. Two nurses walked in with gifts for Eve to unwrap and even had a little something for Natalie. "I want to come again next week!!!"
Nat was pretty fascinated with the whole port-access process. ("So that's what they do to your bump!") The nurses let her push in the saline flush and the heparin lock. While we waited for the chemo from the pharmacy, Eve and Nat danced around the room while the doctor talked to us about Eve's blood work.
Her ANC had gotten back up into the 700s, but her hemoglobin dropped to 7.2. Not neutropenic anymore, but in need of a transfusion. He felt comfortable enough waiting until Saturday to do it, since she had an amazing amount of energy. (Thanks, Natalie!) We had arrived early in the event that she would need to be transfused, but apparently the whole cross-matching stuff takes a few hours, plus the 2.5 or so hours to give her the blood. This kind of stuff wasn't on Dark Shadows, so it was all new to me.
Eve isn't getting any hoarser and her gait remains unaffected, so she was given the full dose of Vincristine. Natalie was disappointed she wasn't allowed to administer that, but the nurse did let her help flush and lock the port when she was done. Natalie now wants to be a nurse when she grows up...or an apartment. (What do you think an apartment is, Natalie? "I don't know. Let's ask Daddy when he gets back. That's what I want to be when I'm big.")
9 down, 3 to go.
We arrived home to find a bag of presents from a Secret Santa on our front doorstep. Each family member had a gift and I didn't recognize the handwriting on the tags. Mysterious! But, it must be someone I know, because there were some Taco Bell bucks inside! I can't wait to go emotionally eat over there.
The stress of our situation has been getting to me a little, I'll admit. But what really put me over the edge were the Christmas decorations. I put up most of our decorations knowing that Eve would be stuck in the house all season. It all started one [terribly cold] day when I locked myself out of the house. Insert lots of obscenities and exclamation points here. When I finally got back in, I noticed the middle section of our miniature pre-lit Christmas tree had burned out. I profanely wondered aloud why a 3-foot Christmas tree had three sections of lights anyway when I walked into our living room and saw the big pre-lit tree had its middle section burned out, as well. Now the bad words were just spewing out of my mouth. Within the next 24 hours, the star on top of the tree, the lighted garland on our mantle, and the top section of the mini-tree would also burn out.
Could Jack Bauer even save this Christmas??
I got out the last of the cusswords, shoved handfuls of cookies in my mouth, and got to work. Fortunately, I had a fair collection of old strands of lights from the pre-pre-lit era that I unearthed in the garage. Out of these, three whole strands worked. But kudos to me for plugging them in first before putting them on the trees! I won't make that same mistake more than four or five times, no siree.
So, Christmas was allowed to go on as planned.
I have long given up hope of the kids eating anything we eat at dinner, so for Christmas Eve, my mom and I put on our short-order cook hats and whipped up a bizarre asssortment of the kids' favorite foods--peanut butter and jelly snowman sandwiches (Daniel), deviled eggs (Natalie), and boxed macaroni and cheese (Eve). We really went all out! Don't worry, there were some fruits and vegetables thrown in there to counteract all the sugar, sodium, and cholesterol.
The big people feasted on filets before we all squeezed into the minivan to look at Christmas lights. (Perhaps I should have eaten after the squeezing since I was in between Nat and Dan's booster seats.) There were the people who spent a lot of hours hanging lights from their houses. Then there were the people who threw a strand of lights into their Charlie Brown trees and called it a day. It didn't matter to the kids- they loved it all. And that's the best part about kids.
When we returned, we found the elves had left us new Christmas pajamas on our hearth. That's an exciting time of day in my book, because it signals bath time and bed! Daniel set out the cookies for Santa via the "one for him, one for me" method, while Natalie mixed up some chocolate milk to go with it. The reindeer food was sprinkled on the front lawn, and finally, time for bed.
Well, at least for them, it was. By the looks of it, Santa must have stayed up late wrapping all those gifts and eating all those cookies.
It was a fun Christmas morning for all of us as we went downstairs to see what the big guy had left us. Eve was excited to open her gifts just as much as the other kids. Natalie was convinced that Daniel got more presents than she did, only because she opened them up at record speed. By 8:00 a.m., Eve was dressed as Snow White, Natalie was Princess Tiana, and Daniel was flying around the house as Buzz Lightyear. He would remain in this costume most of the day.
Eve was more tired than usual and not interested in eating much of anything besides candy canes. She came downstairs after a nap and watched Christmas Vacation with us for a bit before she went back to bed. The transfusion was starting to look like a great idea.
After Thanksgiving, Matt and I decided we did not want a traditional Christmas dinner. Thankfully my parents are not picky and eat whatever I put in front of them, so I whipped up what looked like an Indian buffet. I'm not sure if anyone in India actually eats what I prepared, but no one questioned the names I made up as I directed them down the line of food. It was as far from a ham dinner as you can get.
An uneventfully eventful day.
We awoke yesterday morning no worse for the wear from the itis. Back to Duke. This time to the Day-Ho. Instead of a big comfy chair, we got to pick out our very own hospital room. Yesterday was the first day that Eve was a bit fussy for the nurse. She replaced the word "yes" with "no" for everything.
Nurse: Hi, Eve!
Eve: No.
Nurse: Did you have a good Christmas?
Eve: No.
Nurse: Did Santa bring you lots of presents?
Eve: No.
Nurse: Can I see your port?
Eve: NO.
Nurse: Please, can I lift up your shirt and see your port?
Eve: NOOO!
Once I got her shirt up, Eve was fine. But her initial general uncooperativeness made it obvious that she wasn't feeling well. I was more than ready for her to get this transfusion in hopes that she would get a little more energy and start to feel better. The child got a lot of cool things from Santa that she will need to protect from the clutches of her siblings, and there was no way she was going to do that in her state.
So, getting a transfusion was pretty easy. The nurse accessed her port and then hooked her up to a bag of blood. It dripped over a couple of hours while we sat on the bed watching tv. It was, at first, a bit gross to me to have a tube of someone else's blood draped across my legs as it filtered into Eve. But that didn't stop me from eating my chicken salad sandwich. Hey, it was lunch time!
Back home for nap time. I put Eve down and then got Nat up for her Christmas present from us- tickets to The Nutcracker. Nat decided she wanted to go out for pepperoni pizza, so we drove to the Mellow Mushroom in downtown Raleigh. "That mushroom is so funny, Mommy! Mushrooms make people act silly." It was nice to go out with just Natalie and not have to divide my attention. Just me and Natalie...and a small army of Littlest Pet Shop figurines.
I was pleasantly surprised to make it through the entire ballet. No bathroom emergencies. No whining about the show being too long. And for once, I wasn't the mom that everyone was turning around to stare at disapprovingly when their kid was acting up. A Christmas miracle!
After the ballet was over, I let Natalie pick what she wanted to get for dessert. "Pie!" So, off we went in search of pie.
Finding pie the day after Christmas is not as easy as one might expect. A surprising number of restaurants were still closed for the holiday. I started at the IHOP on Hillsborough Street. We were seated and brought menus and asked for our drink order. I cut to the chase and said we were only there for dessert. "Well, let me go check to make sure we have ice cream," the young waiter said. Actually, she wants pie. "Oh, we don't have pie." I'm sorry, I guess we'll try somewhere else. "Oh, let me get my manager and ask her if she knows where you can get some!"
So now, I'm in the middle of a busy IHOP, made to wait in front of a large group of people while the management discusses pie with Natalie. I seriously hate being looked at by people. (Imagine our wedding day. Stop staring at me, people! You're going to make me throw up!) Suddenly IHOP turns into Macy's from Miracle on 34th Street and they are sending me to Gimbles to get the pie that they don't have in stock.
We get back into the van and Nat starts singing a song about pie, which sounds very much like Bob Dylan singing Christmas carols. I missed the exit that I needed to take because someone maybe had not enough Christmas spirit (or maybe too much spirits?) and was forced to take the scenic route to Bob Evans. "Mommy, how many more minutes until I get my pie? Why can't I get strawberry pie? Why doesn't anyone grow strawberries in the winter? Why can't you get to the pie faster?"
All was well when we finally got the slice of pie. I ignored the looks from people who were staring at that woman bringing the four-year-old in for a sugar rush at 9:55 p.m. Hey, at least I'm not that parent bringing their toddler into the Walmart for an 11:30 beer run...yet. Don't push me, people. It's been a long couple of days.
Thursday was a chemo day for Eve. Natalie was off from preschool, so she joined us on our weekly clinic trip. We left the house at 7:00 a.m. for a 45-minute journey of Natalie saying over and over again, "This is a loooooooooong ride. How many minutes until we get there?"
The ride did feel a bit longer than usual, but then again, we were hauling with us Chatty Cathy, the human egg timer. When it's Christmas Eve and there are no more days left to count down, we have discovered that four-year-olds will switch to minutes. These minutes are measured in millions, thousands, hundreds, and any combination of the three. "Is Santa coming in eight thousand-million-hundred minutes?"
It was nice to have Natalie there with Eve. Having big sis around puts a little more pep in Tiny Tim's step. Entering the Children's Health Center was quite fascinating for Natalie- it certainly made it hard to understand that this was a place where you came when you were sick. It was fabulous! Bright colors, beautiful paintings, toys, toys, and more toys, computers, giant fish tanks, and magic elevators that you can see through. "Is this where you come all the time with Eve, Mommy?" Yes, this is where we come when we take Eve to the doctor. "Why do I have to go to preschool? I want to come here!"
One thing about having cancer on Christmas Eve is that Santa will have already left you some presents at the clinic. Two nurses walked in with gifts for Eve to unwrap and even had a little something for Natalie. "I want to come again next week!!!"
Nat was pretty fascinated with the whole port-access process. ("So that's what they do to your bump!") The nurses let her push in the saline flush and the heparin lock. While we waited for the chemo from the pharmacy, Eve and Nat danced around the room while the doctor talked to us about Eve's blood work.
Her ANC had gotten back up into the 700s, but her hemoglobin dropped to 7.2. Not neutropenic anymore, but in need of a transfusion. He felt comfortable enough waiting until Saturday to do it, since she had an amazing amount of energy. (Thanks, Natalie!) We had arrived early in the event that she would need to be transfused, but apparently the whole cross-matching stuff takes a few hours, plus the 2.5 or so hours to give her the blood. This kind of stuff wasn't on Dark Shadows, so it was all new to me.
Eve isn't getting any hoarser and her gait remains unaffected, so she was given the full dose of Vincristine. Natalie was disappointed she wasn't allowed to administer that, but the nurse did let her help flush and lock the port when she was done. Natalie now wants to be a nurse when she grows up...or an apartment. (What do you think an apartment is, Natalie? "I don't know. Let's ask Daddy when he gets back. That's what I want to be when I'm big.")
9 down, 3 to go.
We arrived home to find a bag of presents from a Secret Santa on our front doorstep. Each family member had a gift and I didn't recognize the handwriting on the tags. Mysterious! But, it must be someone I know, because there were some Taco Bell bucks inside! I can't wait to go emotionally eat over there.
The stress of our situation has been getting to me a little, I'll admit. But what really put me over the edge were the Christmas decorations. I put up most of our decorations knowing that Eve would be stuck in the house all season. It all started one [terribly cold] day when I locked myself out of the house. Insert lots of obscenities and exclamation points here. When I finally got back in, I noticed the middle section of our miniature pre-lit Christmas tree had burned out. I profanely wondered aloud why a 3-foot Christmas tree had three sections of lights anyway when I walked into our living room and saw the big pre-lit tree had its middle section burned out, as well. Now the bad words were just spewing out of my mouth. Within the next 24 hours, the star on top of the tree, the lighted garland on our mantle, and the top section of the mini-tree would also burn out.
Could Jack Bauer even save this Christmas??
I got out the last of the cusswords, shoved handfuls of cookies in my mouth, and got to work. Fortunately, I had a fair collection of old strands of lights from the pre-pre-lit era that I unearthed in the garage. Out of these, three whole strands worked. But kudos to me for plugging them in first before putting them on the trees! I won't make that same mistake more than four or five times, no siree.
So, Christmas was allowed to go on as planned.
I have long given up hope of the kids eating anything we eat at dinner, so for Christmas Eve, my mom and I put on our short-order cook hats and whipped up a bizarre asssortment of the kids' favorite foods--peanut butter and jelly snowman sandwiches (Daniel), deviled eggs (Natalie), and boxed macaroni and cheese (Eve). We really went all out! Don't worry, there were some fruits and vegetables thrown in there to counteract all the sugar, sodium, and cholesterol.
The big people feasted on filets before we all squeezed into the minivan to look at Christmas lights. (Perhaps I should have eaten after the squeezing since I was in between Nat and Dan's booster seats.) There were the people who spent a lot of hours hanging lights from their houses. Then there were the people who threw a strand of lights into their Charlie Brown trees and called it a day. It didn't matter to the kids- they loved it all. And that's the best part about kids.
When we returned, we found the elves had left us new Christmas pajamas on our hearth. That's an exciting time of day in my book, because it signals bath time and bed! Daniel set out the cookies for Santa via the "one for him, one for me" method, while Natalie mixed up some chocolate milk to go with it. The reindeer food was sprinkled on the front lawn, and finally, time for bed.
Well, at least for them, it was. By the looks of it, Santa must have stayed up late wrapping all those gifts and eating all those cookies.
It was a fun Christmas morning for all of us as we went downstairs to see what the big guy had left us. Eve was excited to open her gifts just as much as the other kids. Natalie was convinced that Daniel got more presents than she did, only because she opened them up at record speed. By 8:00 a.m., Eve was dressed as Snow White, Natalie was Princess Tiana, and Daniel was flying around the house as Buzz Lightyear. He would remain in this costume most of the day.
Eve was more tired than usual and not interested in eating much of anything besides candy canes. She came downstairs after a nap and watched Christmas Vacation with us for a bit before she went back to bed. The transfusion was starting to look like a great idea.
After Thanksgiving, Matt and I decided we did not want a traditional Christmas dinner. Thankfully my parents are not picky and eat whatever I put in front of them, so I whipped up what looked like an Indian buffet. I'm not sure if anyone in India actually eats what I prepared, but no one questioned the names I made up as I directed them down the line of food. It was as far from a ham dinner as you can get.
An uneventfully eventful day.
We awoke yesterday morning no worse for the wear from the itis. Back to Duke. This time to the Day-Ho. Instead of a big comfy chair, we got to pick out our very own hospital room. Yesterday was the first day that Eve was a bit fussy for the nurse. She replaced the word "yes" with "no" for everything.
Nurse: Hi, Eve!
Eve: No.
Nurse: Did you have a good Christmas?
Eve: No.
Nurse: Did Santa bring you lots of presents?
Eve: No.
Nurse: Can I see your port?
Eve: NO.
Nurse: Please, can I lift up your shirt and see your port?
Eve: NOOO!
Once I got her shirt up, Eve was fine. But her initial general uncooperativeness made it obvious that she wasn't feeling well. I was more than ready for her to get this transfusion in hopes that she would get a little more energy and start to feel better. The child got a lot of cool things from Santa that she will need to protect from the clutches of her siblings, and there was no way she was going to do that in her state.
So, getting a transfusion was pretty easy. The nurse accessed her port and then hooked her up to a bag of blood. It dripped over a couple of hours while we sat on the bed watching tv. It was, at first, a bit gross to me to have a tube of someone else's blood draped across my legs as it filtered into Eve. But that didn't stop me from eating my chicken salad sandwich. Hey, it was lunch time!
Back home for nap time. I put Eve down and then got Nat up for her Christmas present from us- tickets to The Nutcracker. Nat decided she wanted to go out for pepperoni pizza, so we drove to the Mellow Mushroom in downtown Raleigh. "That mushroom is so funny, Mommy! Mushrooms make people act silly." It was nice to go out with just Natalie and not have to divide my attention. Just me and Natalie...and a small army of Littlest Pet Shop figurines.
I was pleasantly surprised to make it through the entire ballet. No bathroom emergencies. No whining about the show being too long. And for once, I wasn't the mom that everyone was turning around to stare at disapprovingly when their kid was acting up. A Christmas miracle!
After the ballet was over, I let Natalie pick what she wanted to get for dessert. "Pie!" So, off we went in search of pie.
Finding pie the day after Christmas is not as easy as one might expect. A surprising number of restaurants were still closed for the holiday. I started at the IHOP on Hillsborough Street. We were seated and brought menus and asked for our drink order. I cut to the chase and said we were only there for dessert. "Well, let me go check to make sure we have ice cream," the young waiter said. Actually, she wants pie. "Oh, we don't have pie." I'm sorry, I guess we'll try somewhere else. "Oh, let me get my manager and ask her if she knows where you can get some!"
So now, I'm in the middle of a busy IHOP, made to wait in front of a large group of people while the management discusses pie with Natalie. I seriously hate being looked at by people. (Imagine our wedding day. Stop staring at me, people! You're going to make me throw up!) Suddenly IHOP turns into Macy's from Miracle on 34th Street and they are sending me to Gimbles to get the pie that they don't have in stock.
We get back into the van and Nat starts singing a song about pie, which sounds very much like Bob Dylan singing Christmas carols. I missed the exit that I needed to take because someone maybe had not enough Christmas spirit (or maybe too much spirits?) and was forced to take the scenic route to Bob Evans. "Mommy, how many more minutes until I get my pie? Why can't I get strawberry pie? Why doesn't anyone grow strawberries in the winter? Why can't you get to the pie faster?"
All was well when we finally got the slice of pie. I ignored the looks from people who were staring at that woman bringing the four-year-old in for a sugar rush at 9:55 p.m. Hey, at least I'm not that parent bringing their toddler into the Walmart for an 11:30 beer run...yet. Don't push me, people. It's been a long couple of days.
Thursday, December 10, 2009
Jesus the triops?
One thing we have have learned to expect lately is to expect nothing.
Wednesday night, as Natalie and Daniel were excitedly getting ready to see Disney on Ice, one of Eve's oncologists called. The doctors had been communicating with their counterparts across the country, discussing the images from Eve's CT scan. Eve's left kidney showed remarkable improvement- the tumors on that side have shrunk down so much, that the surgeon is confident he could go in and remove the lesions while leaving most of the kidney untouched. The right kidney also shows great improvement, but there are still many areas that would need to be removed. It has been decided to give Eve another 6 weeks of chemo in an effort to shrink these tumors down further, since she has been responding so well to treatment. The hope is to give the surgeon a better chance to be able to save some of the right kidney. So...westward ho! Eve Does Chemo: take two.
It was nice for Nat and Dan to do something with both Mommy and Daddy. The ice show was very cool (temperature pun, get it?). I enjoyed myself, too. The last ice skating event I had seen was an Ice Capades show featuring the Smurfs. Magic on ice was a long time coming for this momma! Nat is counting down the days until we can go next year, but with Eve.
Christmas crafts are in full swing at the Griffith house. Grandmas have been gluing pom poms to popsicle sticks, cutting out Christmas trees, and coloring cards. Everything is proudly displayed, no matter how Jackson Pollock it may be. Daniel brought home a manger he made in preschool of baby Jesus. "Baby Jesus is a triops. I gave him three eyes." (Indeed, baby Jesus is a triops, although he looks more like a bespeckled circus peanut to this art critic.) If beauty is in the eye of the beholder, things must be triply beautiful for Jesus the triops.
We left Christmas Cove this morning for Duke once again. Eve had her port accessed before we were sent downstairs for an echocardiogram. Her heart looked good and we were sent back upstairs. Chemo, game on!
The doctor showed us before and after images from the CT scans. Wowza! Massive difference. We can actually see some kidney now. We also watched as the oncologist tried to decipher the results of the genetic tests. First up, Christy Griffith. And...no defect! Now the pressure is on Matt. And...he's defect-free! Looks like it's just bad luck that Eve has Wilms in both kidneys. Out of the 400-500 cases of Wilms diagnosed annually in the U.S., only 5% of those are bilateral.
Eve's ANC was 1065. She was all cleared for the full dose of Vincristine, in addition to Doxorubicin and Dactinomycin. The clinic was slammin' today, so we were sent down to the Jim Valvano Day Hospital. Heigh-ho, heigh-ho, we're off to the Day-Ho! It's basically a big room with oversized chairs, televisions, and IV poles. Eve got her Zofran drip to keep the nausea at bay before receiving the rest of the drugs.
One of the nurses signed Eve up for the Beads of Courage program. You get a string with your child's name on it, and the patient gets glass beads for various things. For instance, Eve gets a light green glass bead everytime she undergoes some sort of scan. So, she gets 9 beads for having a MRI, two CT scans, an X-ray, two echocardiograms, two ultrasounds, and an EKG. As you can guess, her string is pretty full of beads. She has beads for each chemo treatment, each time she's gotten poked with something...she even has one for losing her hair. Little Cindy-Lou Who's string is getting full, and we've only just begun!
7 down, 5 to go! (I'd hate to start over and say 1 down, 5 to go, because it seems kind of depressing to start from ground zero again. I'm not a glass is half-empty type of person. I'm not even a glass is half-full kind of person. I am more of a "You've got twice as much glass as you need" type person.)
Friday, December 4, 2009
Just stop talking and give me the forecast.
Yesterday I took Daniel to the ENT for his follow-up appointment. It appears that his adenoids are indeed shrinking, but they are still getting in the way of him breathing through his nose. The snoring has stopped, though. Now I have to check to make sure he's breathing when I sneak into his room at night. I'm not used to the silence.
The doctor told me we could either try to wait it out (some kids outgrow the enlarged adenoids) or we can have them removed. How long till he might outgrow it? No one knows. One year? Three years? It's anyone's guess. I am leaning toward taking them out. I do not want Daniel to be the boy drooling on himself in kindergarten because he can't breathe through his mouth.
One of the nurses at the ENT office commented on Daniel's cowboy boots. "It's good you have them because it's going to SNOW on Saturday!" Seriously? Do you think that was the right thing to tell my three-year-old? Do you have to drive home with him asking how many snow men and snow angels and snow cowboys we are going to make on Saturday?
I hadn't heard of us getting any snow, so I stayed up to watch the weather forecast on the 11:00 news. I have this problem...10 times out of 10, I never know what the forecast is after watching it. I make myself stand there three feet from the television and concentrate really hard but I always drift off. The weather person is talking so fast and going on and on about pressure systems and barometric tendencies and El Niño that I am reminded of how much I disliked meteorology in college and while I'm remembering that, I've completely missed the whole forecast.
I don't want a meteorology lesson. I don't care why this weather is happening. I just want to know if I'll need a coat tomorrow.
Since I missed the weather report once again, I went to our local news station's website and discovered we might get about four snowflakes on Saturday before it gets mixed in with rain. (I'm not sure why I didn't check online in the first place.) I don't know how many snow cowboys we'll get to make with that.
Today was our last chemo day for the interim. Unfortunately, there was an accident on the Durham Freeway, so we arrived at 9:30 instead of 9:00. Thirty minutes might not seem like a big deal, but trust me, it is. The clinic parking area was full. We had to park in the -gasp- parking deck! Farther away and more expensive. It's not the short walk that gets me, it's the trying to find the van afterward. Our van is much harder for me to find now that I took the duct tape off of the back.
Another drawback to arriving after the clinic has been open for thirty minutes is being in the back of the line. We have been so used to going right back to an exam room upon arrival that sitting in the waiting room felt very strange. I'm pretty mediocre at the waiting game anyway, but today I felt myself watching the clock more than usual. We put Emla cream on Eve's port to numb it, and it only works for four hours. We have been told we cannot reapply it. Eek! We put the cream on her at 8:00 before we left the house and it was already 10:15.
We were finally taken back to get Eve's vitals around 10:20. Her blood pressure was good and she hasn't lost any weight. The exam rooms were packed, so we were sent back out to the waiting room. Did I mention I'm not good at waiting? I just wanted her port accessed before that cream wore off. It was getting all kinds of Jack Bauer in my head! Could she be accessed within the hour??
She could. The nurse took her back to a room around 10:45 and her port was accessed at 11:00. Whew! Crisis averted.
Eve is a pro at conversing with adults. In reality, she is just repeating everything she hears. Today she set a record for keeping up the ruse.
Nurse: Did you have a good week?
Eve: Yeah, had good week.
Nurse: Did you do anything fun?
Eve: Yeah, fun.
Nurse: Did you decorate your house for Christmas?
Eve: Yeah, decorate house Christmas.
Nurse: Do you have a Christmas tree?
Eve: Yeah, have Christmas tree.
Nurse: Do you have a favorite ornament?
Eve: Yeah, have favorite ornament.
Nurse: What is your favorite ornament?
Eve: Yeah.
Blood counts look good- her ANC was up to 1276.
Since Eve seems to have recovered from the choking fits she was having when she drank, the doctors increased her dose of Vincristine to 75% of her normal dose. After that was done, we headed downstairs so she could get her second H1N1 vaccination at the flu clinic. Matt took her back to get the shot and she was done before I could finish eavesdropping on some lady's phone call. It sounded pretty interesting, too! Don't judge me.
Tonight we decided that Eve's ANC was high enough to let her sleep in Natalie's room instead of ours. Tonight I'm going to turn on all the lights when I put on my pajamas! I've been waking up in some really interesting outfits lately.
The doctor told me we could either try to wait it out (some kids outgrow the enlarged adenoids) or we can have them removed. How long till he might outgrow it? No one knows. One year? Three years? It's anyone's guess. I am leaning toward taking them out. I do not want Daniel to be the boy drooling on himself in kindergarten because he can't breathe through his mouth.
One of the nurses at the ENT office commented on Daniel's cowboy boots. "It's good you have them because it's going to SNOW on Saturday!" Seriously? Do you think that was the right thing to tell my three-year-old? Do you have to drive home with him asking how many snow men and snow angels and snow cowboys we are going to make on Saturday?
I hadn't heard of us getting any snow, so I stayed up to watch the weather forecast on the 11:00 news. I have this problem...10 times out of 10, I never know what the forecast is after watching it. I make myself stand there three feet from the television and concentrate really hard but I always drift off. The weather person is talking so fast and going on and on about pressure systems and barometric tendencies and El Niño that I am reminded of how much I disliked meteorology in college and while I'm remembering that, I've completely missed the whole forecast.
I don't want a meteorology lesson. I don't care why this weather is happening. I just want to know if I'll need a coat tomorrow.
Since I missed the weather report once again, I went to our local news station's website and discovered we might get about four snowflakes on Saturday before it gets mixed in with rain. (I'm not sure why I didn't check online in the first place.) I don't know how many snow cowboys we'll get to make with that.
Today was our last chemo day for the interim. Unfortunately, there was an accident on the Durham Freeway, so we arrived at 9:30 instead of 9:00. Thirty minutes might not seem like a big deal, but trust me, it is. The clinic parking area was full. We had to park in the -gasp- parking deck! Farther away and more expensive. It's not the short walk that gets me, it's the trying to find the van afterward. Our van is much harder for me to find now that I took the duct tape off of the back.
Another drawback to arriving after the clinic has been open for thirty minutes is being in the back of the line. We have been so used to going right back to an exam room upon arrival that sitting in the waiting room felt very strange. I'm pretty mediocre at the waiting game anyway, but today I felt myself watching the clock more than usual. We put Emla cream on Eve's port to numb it, and it only works for four hours. We have been told we cannot reapply it. Eek! We put the cream on her at 8:00 before we left the house and it was already 10:15.
We were finally taken back to get Eve's vitals around 10:20. Her blood pressure was good and she hasn't lost any weight. The exam rooms were packed, so we were sent back out to the waiting room. Did I mention I'm not good at waiting? I just wanted her port accessed before that cream wore off. It was getting all kinds of Jack Bauer in my head! Could she be accessed within the hour??
She could. The nurse took her back to a room around 10:45 and her port was accessed at 11:00. Whew! Crisis averted.
Eve is a pro at conversing with adults. In reality, she is just repeating everything she hears. Today she set a record for keeping up the ruse.
Nurse: Did you have a good week?
Eve: Yeah, had good week.
Nurse: Did you do anything fun?
Eve: Yeah, fun.
Nurse: Did you decorate your house for Christmas?
Eve: Yeah, decorate house Christmas.
Nurse: Do you have a Christmas tree?
Eve: Yeah, have Christmas tree.
Nurse: Do you have a favorite ornament?
Eve: Yeah, have favorite ornament.
Nurse: What is your favorite ornament?
Eve: Yeah.
Blood counts look good- her ANC was up to 1276.
Since Eve seems to have recovered from the choking fits she was having when she drank, the doctors increased her dose of Vincristine to 75% of her normal dose. After that was done, we headed downstairs so she could get her second H1N1 vaccination at the flu clinic. Matt took her back to get the shot and she was done before I could finish eavesdropping on some lady's phone call. It sounded pretty interesting, too! Don't judge me.
Tonight we decided that Eve's ANC was high enough to let her sleep in Natalie's room instead of ours. Tonight I'm going to turn on all the lights when I put on my pajamas! I've been waking up in some really interesting outfits lately.
Friday, November 27, 2009
Black Friday Special: Vincristine, Half-Off!
Yesterday, I cooked for the first time in five weeks. My body has been out of kitchen shape- standing in there all day long fixing Thanksgiving dinner really did a number on my shins! Lesson learned: don't cook barefoot for hours on end in a house that is on a slab.
Eve has been noticeably tired the past few days. She also hasn't been very interested in eating (except for the pumpkin pie). But we did have something very important to be thankful for- Eve dirtied up some diapers after a few days of holding out on us! Exclamation point!
On clinic mornings, I'm usually up before a lot of my friends. Today was an exception- crazy people everywhere were up hours before dawn to go bargain shopping! Normally, I would happily be a part of this crowd, but this year I had many people shopping in my honor while we left for chemo. The roads were clear on the way out to Durham and we arrived in record time, even after leaving late. Black Friday rocks the house already.
We checked in and were immediately taken back. We met a new nurse today who marveled at Eve's awesomeness. This girl can handle a port access like nobody's business! The labs came back quickly, probably since there was NO ONE at the clinic. Eve's blood work looks good- her ANC is 2750. Her counts should start to drop this week.
Eve is still a bit hoarse and the coughing has returned when she drinks, but the doctors decide it is better to press on with treatment than to skip another dose. She received half a dose of Vincristine. The pharmacy took no time at all to make this, on account of us being the only people in the triangle area not shopping.
This was the quickest chemo ever. We were done at 10:47 a.m. Just enough time to get in some last minute doorbusters! I bet we could have gotten to the front of the lines if we had walked in with Eve in a mask.
5 down, 1 to go!
Eve has been noticeably tired the past few days. She also hasn't been very interested in eating (except for the pumpkin pie). But we did have something very important to be thankful for- Eve dirtied up some diapers after a few days of holding out on us! Exclamation point!
On clinic mornings, I'm usually up before a lot of my friends. Today was an exception- crazy people everywhere were up hours before dawn to go bargain shopping! Normally, I would happily be a part of this crowd, but this year I had many people shopping in my honor while we left for chemo. The roads were clear on the way out to Durham and we arrived in record time, even after leaving late. Black Friday rocks the house already.
We checked in and were immediately taken back. We met a new nurse today who marveled at Eve's awesomeness. This girl can handle a port access like nobody's business! The labs came back quickly, probably since there was NO ONE at the clinic. Eve's blood work looks good- her ANC is 2750. Her counts should start to drop this week.
Eve is still a bit hoarse and the coughing has returned when she drinks, but the doctors decide it is better to press on with treatment than to skip another dose. She received half a dose of Vincristine. The pharmacy took no time at all to make this, on account of us being the only people in the triangle area not shopping.
This was the quickest chemo ever. We were done at 10:47 a.m. Just enough time to get in some last minute doorbusters! I bet we could have gotten to the front of the lines if we had walked in with Eve in a mask.
5 down, 1 to go!
Saturday, November 21, 2009
ANC, LFT, and DOG
Yesterday was the kind of day that just doesn't know when to call it quits. Much like a guest at a party who is still downstairs drinking when the hosts have long since gone to bed.
(Don't be that guy.)
We left the house at 7:30 for our 8:30 ultrasound appointment. The oncologists wanted to see how the tumors are shrinking. I agreed to let Eve out of the stroller for the first time to play in the waiting area, and as a girl the same size came over to play next to her, all of a sudden it struck me how sad it is that she hasn't played with anyone besides her siblings in a month. The only kids she sees nowadays look a lot like her- balding, faces hidden behind masks.
(I can now understand why people go ahead and shave their heads once they start losing their hair. You have two choices: cut it all off, or find it in your food. I could have sworn I had a bug up my nose the other day, only to find one of Eve's hairs had made its way up there. And starting the day off hacking up a hairball will NOT land you on People's Sexiest list of 2009.)
We were taken back for our ultrasound, and once again, Eve was excellent. Her cooperation really amazes me and everyone who sees her at Duke. Can you picture your two-year-old being patient for not one, not two, but a two and a half hour ultrasound experience? The poor sonographer kept leaving to show the radiologist the images, and he kept asking for more. It felt a little like the man behind the curtain in the Emerald City.
It takes a few days for radiology to write up a full report, so we won't know anything until next week. But, for what it's worth, Eve's oncologist said he could barely feel the tumor and could now feel her liver, which is what her pediatrician was trying to feel when he came upon the mass.
Eve didn't even flinch when the nurse accessed her port. She just says "okay" to anything anyone dressed in scrubs or a lab coat asks her. Whatev!
Her ANC was 1330, up from 891 on Tuesday. The hospital staff speaks in abbreviations and acronyms whenever possible. Before Eve's very first chemo, I heard the doctor say, "I want a repeat LFT and ANC before chemo and then we can do the DOG."
Umm, doc, what's an ANC?
"Oh, that's the absolute neutrophil count."
Ok, then what's an LFT?
"That is a liver function test."
Then, what is a DOG?
Silence.
After deciding my second and third heads were a figment of her imagination, "You know, like ruff ruff?"
Yeah, there was an actual dog who was in the hospital to walk around and cheer up kids. I guess they didn't want to say the word in front of me in case I got too excited.
Eve's energy level has been good and she even gained a little weight since her visit last week. However, she has been hoarse since Monday. Vincristine can cause paralysis of the vocal chords and can slow down your body's reflexes. This explains why Eve has also been choking on her drinks- her airway is slow to close, so liquids really are going down the wrong way. The doctors decided to skip the Vincristine this week and pick it up at a half-dose next week, provided her hoarseness is gone. Better to skip it than to shower her lungs with apple juice.
Yesterday she received Dactinomycin and Doxorubicin. These are the ones that will drop Eve's blood counts again in a week or so. They also cause nausea, so we are pumping her full of Zofran to make it through the weekend without getting sick. She woke up this morning looking a little nauseated, but by mid-morning had requested and eaten a hot dog, pot roast and carrots, and a granola bar. We are being strict with the Zofran, because at least two of those foods you do not want to see or smell making an encore.
4 down, 2 to go!
(Don't be that guy.)
We left the house at 7:30 for our 8:30 ultrasound appointment. The oncologists wanted to see how the tumors are shrinking. I agreed to let Eve out of the stroller for the first time to play in the waiting area, and as a girl the same size came over to play next to her, all of a sudden it struck me how sad it is that she hasn't played with anyone besides her siblings in a month. The only kids she sees nowadays look a lot like her- balding, faces hidden behind masks.
(I can now understand why people go ahead and shave their heads once they start losing their hair. You have two choices: cut it all off, or find it in your food. I could have sworn I had a bug up my nose the other day, only to find one of Eve's hairs had made its way up there. And starting the day off hacking up a hairball will NOT land you on People's Sexiest list of 2009.)
We were taken back for our ultrasound, and once again, Eve was excellent. Her cooperation really amazes me and everyone who sees her at Duke. Can you picture your two-year-old being patient for not one, not two, but a two and a half hour ultrasound experience? The poor sonographer kept leaving to show the radiologist the images, and he kept asking for more. It felt a little like the man behind the curtain in the Emerald City.
It takes a few days for radiology to write up a full report, so we won't know anything until next week. But, for what it's worth, Eve's oncologist said he could barely feel the tumor and could now feel her liver, which is what her pediatrician was trying to feel when he came upon the mass.
Eve didn't even flinch when the nurse accessed her port. She just says "okay" to anything anyone dressed in scrubs or a lab coat asks her. Whatev!
Her ANC was 1330, up from 891 on Tuesday. The hospital staff speaks in abbreviations and acronyms whenever possible. Before Eve's very first chemo, I heard the doctor say, "I want a repeat LFT and ANC before chemo and then we can do the DOG."
Umm, doc, what's an ANC?
"Oh, that's the absolute neutrophil count."
Ok, then what's an LFT?
"That is a liver function test."
Then, what is a DOG?
Silence.
After deciding my second and third heads were a figment of her imagination, "You know, like ruff ruff?"
Yeah, there was an actual dog who was in the hospital to walk around and cheer up kids. I guess they didn't want to say the word in front of me in case I got too excited.
Eve's energy level has been good and she even gained a little weight since her visit last week. However, she has been hoarse since Monday. Vincristine can cause paralysis of the vocal chords and can slow down your body's reflexes. This explains why Eve has also been choking on her drinks- her airway is slow to close, so liquids really are going down the wrong way. The doctors decided to skip the Vincristine this week and pick it up at a half-dose next week, provided her hoarseness is gone. Better to skip it than to shower her lungs with apple juice.
Yesterday she received Dactinomycin and Doxorubicin. These are the ones that will drop Eve's blood counts again in a week or so. They also cause nausea, so we are pumping her full of Zofran to make it through the weekend without getting sick. She woke up this morning looking a little nauseated, but by mid-morning had requested and eaten a hot dog, pot roast and carrots, and a granola bar. We are being strict with the Zofran, because at least two of those foods you do not want to see or smell making an encore.
4 down, 2 to go!
Friday, November 13, 2009
Paco the cat
As far as Friday the 13th's go, this one has been pretty good. (I mean, the cancer thing, not so great, but what can you do?)
Eve is now giving herself medicine with the syringe. Natalie and Daniel cheer her on when she does this. Natalie also does a song and dance when Eve poops.
We headed out to Duke around 8:15, arriving a little bit before 9:00. Matt did the advanced registration online which saved some time when we got there. I gave Eve her morning Dum-Dum and then we were pretty much immediately taken back to the exam room. Eve has amazed me by how cooperative she is. You honestly couldn't ask for a better patient. Matt and I have talked about how the situation would be if the two-year-old versions of Nat or Dan were going through Eve's situation...these visions aren't pretty. I'm sure there would be lots of blood involved, mainly from us, as they scratched and pummeled their way onto our laps and away from the doctors.
Eve's ANC was 500. A normal person would be in the 1500-2000 range. Hopefully her counts are on the rise. We just need to be vigilant about keeping her away from cooties, particularly the ones that have arms and legs called siblings. Eve has a standing order for blood work at the pediatrician's office, so we will go on Tuesday to make sure everything is on the upswing.
She has lost about a pound since the beginning of chemo. Not a big deal if you are 150 pounds, but when you are starting out at 26, things are different. Nothing much to do about that right now, except make sure she's eating well (or as well as can be expected). I'd say Dum-Dums account for 10% of her caloric intake. Does grape flavor count as a fruit?
The best part of our visit was hearing Dr. Wechsler say that he had a very hard time trying to feel the largest tumor. Next week, Eve will have an ultrasound to check out her kidneys and these SOBs called Wilms. Even though these tumors grow like weeds (they double in size every 18 days), they also [usually] respond well to chemotherapy.
The three hours we waited in the exam room for the chemo went by surprisingly fast. Eve ate her lunch and happily watched "Doe Wipe" (Snow White). She barely noticed when she got the chemo, and soon after, we were packing up and out the door. Home by 1:30! Friday the 13th, you can kiss it.
3 down, 3 to go.
I've been thinking lately about Paco the cat. We adopted Paco from the SPCA a long time ago. He was so sweet and laid back. The kind of cat that would just lay in your lap and not move too much. Then we found out he had something medically wrong with him...the veterinarian gave him this magical shot of something or another, and all of a sudden Paco was a different animal. He was not sweet anymore, not even remotely nice. The kind of animal who thirsted for fresh blood (he was vampire before vampire was cool). Paco is long gone from our lives, but I find myself having strange thoughts of Eve turning on us when this is all said and done. She's already started shedding like a cat.
Eve is now giving herself medicine with the syringe. Natalie and Daniel cheer her on when she does this. Natalie also does a song and dance when Eve poops.
We headed out to Duke around 8:15, arriving a little bit before 9:00. Matt did the advanced registration online which saved some time when we got there. I gave Eve her morning Dum-Dum and then we were pretty much immediately taken back to the exam room. Eve has amazed me by how cooperative she is. You honestly couldn't ask for a better patient. Matt and I have talked about how the situation would be if the two-year-old versions of Nat or Dan were going through Eve's situation...these visions aren't pretty. I'm sure there would be lots of blood involved, mainly from us, as they scratched and pummeled their way onto our laps and away from the doctors.
Eve's ANC was 500. A normal person would be in the 1500-2000 range. Hopefully her counts are on the rise. We just need to be vigilant about keeping her away from cooties, particularly the ones that have arms and legs called siblings. Eve has a standing order for blood work at the pediatrician's office, so we will go on Tuesday to make sure everything is on the upswing.
She has lost about a pound since the beginning of chemo. Not a big deal if you are 150 pounds, but when you are starting out at 26, things are different. Nothing much to do about that right now, except make sure she's eating well (or as well as can be expected). I'd say Dum-Dums account for 10% of her caloric intake. Does grape flavor count as a fruit?
The best part of our visit was hearing Dr. Wechsler say that he had a very hard time trying to feel the largest tumor. Next week, Eve will have an ultrasound to check out her kidneys and these SOBs called Wilms. Even though these tumors grow like weeds (they double in size every 18 days), they also [usually] respond well to chemotherapy.
The three hours we waited in the exam room for the chemo went by surprisingly fast. Eve ate her lunch and happily watched "Doe Wipe" (Snow White). She barely noticed when she got the chemo, and soon after, we were packing up and out the door. Home by 1:30! Friday the 13th, you can kiss it.
3 down, 3 to go.
I've been thinking lately about Paco the cat. We adopted Paco from the SPCA a long time ago. He was so sweet and laid back. The kind of cat that would just lay in your lap and not move too much. Then we found out he had something medically wrong with him...the veterinarian gave him this magical shot of something or another, and all of a sudden Paco was a different animal. He was not sweet anymore, not even remotely nice. The kind of animal who thirsted for fresh blood (he was vampire before vampire was cool). Paco is long gone from our lives, but I find myself having strange thoughts of Eve turning on us when this is all said and done. She's already started shedding like a cat.
Saturday, November 7, 2009
30 seconds of chemo, 8 am- 4:30 pm!
Yesterday was one of those days that I almost bought a cup of regular coffee. Nine months of decaf nearly down the tubes!
We left the house at 8:00 to head over to the hematology-oncology clinic at Duke. (This is referred to as Hem-Onc by the staff at the hospital. I swear I thought they were making donkey noises the first few times I heard it.) The first thirty minutes were spent traveling the two miles to US 1. It's always bumper-to-bumper heading out that way, but yesterday morning was especially backed up due to a tar truck overturning on Highway 55. I hope they put the tar to good use and filled in some pot holes! Make lemonade, I always say.
9:00
Checked-in at the clinic.
9:30
Called back for our 9:00 appointment. Eve's vitals are taken.
10:15
Nurse accesses port and draws Eve's blood. We put a cream called Emla on Eve's port site right before we left our house. It is a numbing cream, and apparently it works well- according to the nurse, Eve was "phenomenal" during her first port access.
10:20-11:55
We talk to doctors and wait in the exam room while the lab checks Eve's blood. The doctor feels Eve's abdomen and notes that it doesn't appear to be as firm as when he felt it two weeks ago. If we didn't already love the doctors at Duke so much, this just sealed the deal. Hope! Progress!! Dr. Wechsler is also pleased with the amount of energy Eve has.
12:00
Lab results are back and Eve gets the OK for chemo. We are told chemo should take about an hour for the pharmacy to prepare.
12:05
We are starving and decide to go down to the cafeteria for lunch. I watch the sushi chef roll things which are labeled with a "Ninja Special" sticker.
12:55
My phone is so buried under coloring books, blankets, and princess paraphernalia, that I miss a phone call.
12:56
I check my voice mail as we get on the elevator to the clinic. YESSS! Chemo is ready. We should just tell the front desk we are back for chemo and we should be ready to start.
12:57
Checked back in with the front desk at the clinic.
1:40
We are whisked away to start chemo.
1:41
Our chemo nurse is called away for an emergency.
1:53
Nurse returns and sets up for 5 minutes. We get another Beware of Constipation! warning. Nurse is very nice and talks "to" Eve, rather than "at" her. She puts a hospital bracelet onto Eve's leg.
1:58
Nurse gives Eve chemo.
1:59
Nurse takes off hospital bracelet, removes needles from port, and sends us on our way.
2:05
We go downstairs to the nephrology clinic and check-in for our 2:15 appointment. Eve is asleep on my shoulder. Matt is given form after form to fill out. (Apparently clinics in the hospital do not share medical records.) I can see his hand start to cramp.
2:30
We are taken back to the exam room. Eve is still asleep. A nurse comes in and says she needs to get Eve's height, weight, and blood pressure, which were just taken at 9:30. I have serious doubts that she has grown any taller since we have been here. Matt suggests the nurse call upstairs to the HEM-ONC clinic to get that information instead of waking up Eve.
2:45
Nurse returns and says she has Eve's weight and BP, but will need to wake Eve up to measure her, as she was told Eve was only 25 cm long. Matt goes upstairs and gets the correct information himself.
3:00
The nephrologist comes in and takes Eve's BP while she is still half-asleep. It reads 107/87. He shows us a chart that shows us a normal BP for her age and size should be 85-90 for the top number and 45-55 for the bottom. He is afraid that her BP must be much higher at home when she is excited or agitated, so he tells us to put her back on the lisinopril. Eve's kidneys will need to be monitored because some blood pressure medications can adversely affect kidney function. Eve will be the 4th child with bilateral Wilms that he has followed, so he knows what he's doing.
3:35
We are back in the parking lot and run into one of the fellows at Duke who always responds to our phone calls (75% of which were previously poop-related). He is pleased to see Eve doing so well.
3:45
We get on the road and head back for home. I smoothly fall asleep with my sunglasses on so Matt is none the wiser.
4:30
We arrive home to a freshly cleaned, quiet house. Our neighbors came over and cleaned while we were gone! Natalie and Daniel were napping! Can you imagine our excitement?? We put Eve down for a nap and sit down, trying to figure out what the heck we did all day.
2 down, 4 to go.
We had some sweet neighbors bring us a delicious meatloaf and some homemade mac and cheese for dinner. Then we were off again for Natalie and Daniel's preschool pirates-and-princesses carnival. Nat put on her tiara and fairy wings and Daniel put on his pirate vest, cowboy hat and boots. ("I'm a cowboy-pirate, Mommy. I ride on a horse that is riding on a boat!")
My mom stayed with Eve while we took Nat and Dan to the carnival. Natalie was moving kind of slow and looked depressed, but I think that was a side-effect of the H1N1 shot. She got a low-grade fever, which is sad, but boy did she sleep well!
Yes...the H1N1 shot. Eve got this in the hospital. Even though it is offered in the nasal mist, the doctors asked that we get Natalie and Daniel the shot, since the virus isn't live. (They were concerned that there was a very small possibility that the mist could carry the virus to someone who is immuno-compromised.) Our pediatrician called to say the shots had just arrived on Thursday, so to make sure we got in at our earliest convenience as they were first come, first served. I highly recommend Dr. Robert Munt of White Oak Peds. (When Daniel was a very colicky baby, Dr. Munt used to call me up once a week just to check in and see how I was doing.)
I took Nat and Dan out on Thursday afternoon to get their shots right after Dr. Munt called. What timing! The kids had just watched an episode of Sid the Science Kid where Sid and his classmates get their flu shots. Unfortunately, Nat only remembered the part where one kid was scared and then said it hurt. She forgot the parts about it only hurting for an instant and the greater goal of keeping you and your community safe. I wish I could write something here about how the kids surprised me with how well they took their shots. I got an earful on the ride home about how horrible it was and how they are never doing that again and how their legs were going to fall off because it hurt so bad. I guess am going to wait a couple of weeks before I tell them that they have to get that second H1N1 shot...
Right before the phone call that the shots were in (please forgive the Memento-style writing of this post), I was at the ENT with Dan. While his tonsils are fine, his adenoids are enlarged. This is the reason he can't breathe through his nose very well. The doctor said some kids grow out of these things, but there's absolutely no way to tell which kids or how long. He gave me a prescription for Nasonex and told me in 2 weeks to video tape him for an hour when he's in deep sleep. A whole hour of Dan snoring on video!!! Look out girlfriends-to-come, we're starting the blackmail early!!!
If the Nasonex doesn't shrink down the adenoids, then we will have to get them removed. No biggie.
Fortunately for us, Daniel really enjoys putting things up his nose, so this Nasonex is easy-peasy. The most bizarre side effect? It could stunt his growth. This one is right up there with a prescription the same doctor had written me which had a side effect of "inappropriate happiness."
We left the house at 8:00 to head over to the hematology-oncology clinic at Duke. (This is referred to as Hem-Onc by the staff at the hospital. I swear I thought they were making donkey noises the first few times I heard it.) The first thirty minutes were spent traveling the two miles to US 1. It's always bumper-to-bumper heading out that way, but yesterday morning was especially backed up due to a tar truck overturning on Highway 55. I hope they put the tar to good use and filled in some pot holes! Make lemonade, I always say.
9:00
Checked-in at the clinic.
9:30
Called back for our 9:00 appointment. Eve's vitals are taken.
10:15
Nurse accesses port and draws Eve's blood. We put a cream called Emla on Eve's port site right before we left our house. It is a numbing cream, and apparently it works well- according to the nurse, Eve was "phenomenal" during her first port access.
10:20-11:55
We talk to doctors and wait in the exam room while the lab checks Eve's blood. The doctor feels Eve's abdomen and notes that it doesn't appear to be as firm as when he felt it two weeks ago. If we didn't already love the doctors at Duke so much, this just sealed the deal. Hope! Progress!! Dr. Wechsler is also pleased with the amount of energy Eve has.
12:00
Lab results are back and Eve gets the OK for chemo. We are told chemo should take about an hour for the pharmacy to prepare.
12:05
We are starving and decide to go down to the cafeteria for lunch. I watch the sushi chef roll things which are labeled with a "Ninja Special" sticker.
12:55
My phone is so buried under coloring books, blankets, and princess paraphernalia, that I miss a phone call.
12:56
I check my voice mail as we get on the elevator to the clinic. YESSS! Chemo is ready. We should just tell the front desk we are back for chemo and we should be ready to start.
12:57
Checked back in with the front desk at the clinic.
1:40
We are whisked away to start chemo.
1:41
Our chemo nurse is called away for an emergency.
1:53
Nurse returns and sets up for 5 minutes. We get another Beware of Constipation! warning. Nurse is very nice and talks "to" Eve, rather than "at" her. She puts a hospital bracelet onto Eve's leg.
1:58
Nurse gives Eve chemo.
1:59
Nurse takes off hospital bracelet, removes needles from port, and sends us on our way.
2:05
We go downstairs to the nephrology clinic and check-in for our 2:15 appointment. Eve is asleep on my shoulder. Matt is given form after form to fill out. (Apparently clinics in the hospital do not share medical records.) I can see his hand start to cramp.
2:30
We are taken back to the exam room. Eve is still asleep. A nurse comes in and says she needs to get Eve's height, weight, and blood pressure, which were just taken at 9:30. I have serious doubts that she has grown any taller since we have been here. Matt suggests the nurse call upstairs to the HEM-ONC clinic to get that information instead of waking up Eve.
2:45
Nurse returns and says she has Eve's weight and BP, but will need to wake Eve up to measure her, as she was told Eve was only 25 cm long. Matt goes upstairs and gets the correct information himself.
3:00
The nephrologist comes in and takes Eve's BP while she is still half-asleep. It reads 107/87. He shows us a chart that shows us a normal BP for her age and size should be 85-90 for the top number and 45-55 for the bottom. He is afraid that her BP must be much higher at home when she is excited or agitated, so he tells us to put her back on the lisinopril. Eve's kidneys will need to be monitored because some blood pressure medications can adversely affect kidney function. Eve will be the 4th child with bilateral Wilms that he has followed, so he knows what he's doing.
3:35
We are back in the parking lot and run into one of the fellows at Duke who always responds to our phone calls (75% of which were previously poop-related). He is pleased to see Eve doing so well.
3:45
We get on the road and head back for home. I smoothly fall asleep with my sunglasses on so Matt is none the wiser.
4:30
We arrive home to a freshly cleaned, quiet house. Our neighbors came over and cleaned while we were gone! Natalie and Daniel were napping! Can you imagine our excitement?? We put Eve down for a nap and sit down, trying to figure out what the heck we did all day.
2 down, 4 to go.
We had some sweet neighbors bring us a delicious meatloaf and some homemade mac and cheese for dinner. Then we were off again for Natalie and Daniel's preschool pirates-and-princesses carnival. Nat put on her tiara and fairy wings and Daniel put on his pirate vest, cowboy hat and boots. ("I'm a cowboy-pirate, Mommy. I ride on a horse that is riding on a boat!")
My mom stayed with Eve while we took Nat and Dan to the carnival. Natalie was moving kind of slow and looked depressed, but I think that was a side-effect of the H1N1 shot. She got a low-grade fever, which is sad, but boy did she sleep well!
Yes...the H1N1 shot. Eve got this in the hospital. Even though it is offered in the nasal mist, the doctors asked that we get Natalie and Daniel the shot, since the virus isn't live. (They were concerned that there was a very small possibility that the mist could carry the virus to someone who is immuno-compromised.) Our pediatrician called to say the shots had just arrived on Thursday, so to make sure we got in at our earliest convenience as they were first come, first served. I highly recommend Dr. Robert Munt of White Oak Peds. (When Daniel was a very colicky baby, Dr. Munt used to call me up once a week just to check in and see how I was doing.)
I took Nat and Dan out on Thursday afternoon to get their shots right after Dr. Munt called. What timing! The kids had just watched an episode of Sid the Science Kid where Sid and his classmates get their flu shots. Unfortunately, Nat only remembered the part where one kid was scared and then said it hurt. She forgot the parts about it only hurting for an instant and the greater goal of keeping you and your community safe. I wish I could write something here about how the kids surprised me with how well they took their shots. I got an earful on the ride home about how horrible it was and how they are never doing that again and how their legs were going to fall off because it hurt so bad. I guess am going to wait a couple of weeks before I tell them that they have to get that second H1N1 shot...
Right before the phone call that the shots were in (please forgive the Memento-style writing of this post), I was at the ENT with Dan. While his tonsils are fine, his adenoids are enlarged. This is the reason he can't breathe through his nose very well. The doctor said some kids grow out of these things, but there's absolutely no way to tell which kids or how long. He gave me a prescription for Nasonex and told me in 2 weeks to video tape him for an hour when he's in deep sleep. A whole hour of Dan snoring on video!!! Look out girlfriends-to-come, we're starting the blackmail early!!!
If the Nasonex doesn't shrink down the adenoids, then we will have to get them removed. No biggie.
Fortunately for us, Daniel really enjoys putting things up his nose, so this Nasonex is easy-peasy. The most bizarre side effect? It could stunt his growth. This one is right up there with a prescription the same doctor had written me which had a side effect of "inappropriate happiness."
Wednesday, November 4, 2009
Thursday, October 29, 2009
I can't believe just five days ago I had never even heard the word "Wilms" and now I am on my way to an honorary doctorate in the subject.
I misspoke yesterday when I said Eve had an EKG...she had an echocardiogram. This morning she got an EKG, which proved her heart is working very well.
Dermatologists came in to check on a curious rash that turned out to be something called lichen striatus. It should go away on its own in a year or so. There goes my theory about this strange, linear rash being related to anything that is going on right now. (I guess not everything HAS to be related to cancer.)
Matt and I both had our blood drawn so the genetics team can compare our blood to Eve's (see first update). There was a miscommunication about my birth year and Matt got some funny looks from his phlebotomist as she thought I was born in 1991. I guess cradle robbers freak out people in the pediatric wing.
We spoke with a clinical social worker who put into words some of the feelings we have been having. It's hard to hear, but helpful at the same time. I am not a cryer, but this week has been emotionally exhausting. I don't think I have felt this drained before.
The nurse from supportive care came up to educate us about all the nitty-gritty stuff. We talked about medicines. We talked about fevers. We talked about who to call at 3 a.m. There was a ton of information. She sent Matt to the pharmacy to pick up the seven prescriptions we will need here at home. The bag he came back with looked like it contained a Bojangles tailgate special inside. There are three anti-nausea medications, one baby laxative, one blood pressure medication, one antibiotic (to prevent pneumonia), and a numbing cream to put on her port before it is accessed for chemotherapy.
Eve got her first round of chemo this evening. She did great...stayed still for the most part. One of the medications (Doxorubicin) is red in color, so 30 minutes after the chemo, her diaper was red. Thankfully, we were told to expect this, or else I would have frantically been hitting the nurse call button. We are supposed to wear gloves when we change her from now on since the drugs are secreted in the urine.
The last order of business at the hospital was her H1N1 vaccine. This poor child has been covered head to toe in band aids, but she takes them like a champ!
The nurse removed the needle from the port and we set off for home, only to find I-40 went from 4 lanes to 1. After a seemingly long journey back, Eve ran inside and put on Natalie's ballet tutu and danced around the house. We finally put her down a little while ago in our room and hope that she can make it through the night without too much nausea.
1 down, 5 to go.
Matt and I have been overwhelmed with the support we have been receiving. With flu season underway, this is a particularly hard time to be immuno-compromised. We will miss visiting with people but know that it is in Eve's best interest to be extra-vigilant and keep her healthy while she goes through this treatment.
Thank you for keeping our family in your thoughts. We are so happy to be back home tonight and can't wait to wake up in the morning to be surrounded by all of our children! (It would be nice if they slept in a bit, though.)
I misspoke yesterday when I said Eve had an EKG...she had an echocardiogram. This morning she got an EKG, which proved her heart is working very well.
Dermatologists came in to check on a curious rash that turned out to be something called lichen striatus. It should go away on its own in a year or so. There goes my theory about this strange, linear rash being related to anything that is going on right now. (I guess not everything HAS to be related to cancer.)
Matt and I both had our blood drawn so the genetics team can compare our blood to Eve's (see first update). There was a miscommunication about my birth year and Matt got some funny looks from his phlebotomist as she thought I was born in 1991. I guess cradle robbers freak out people in the pediatric wing.
We spoke with a clinical social worker who put into words some of the feelings we have been having. It's hard to hear, but helpful at the same time. I am not a cryer, but this week has been emotionally exhausting. I don't think I have felt this drained before.
The nurse from supportive care came up to educate us about all the nitty-gritty stuff. We talked about medicines. We talked about fevers. We talked about who to call at 3 a.m. There was a ton of information. She sent Matt to the pharmacy to pick up the seven prescriptions we will need here at home. The bag he came back with looked like it contained a Bojangles tailgate special inside. There are three anti-nausea medications, one baby laxative, one blood pressure medication, one antibiotic (to prevent pneumonia), and a numbing cream to put on her port before it is accessed for chemotherapy.
Eve got her first round of chemo this evening. She did great...stayed still for the most part. One of the medications (Doxorubicin) is red in color, so 30 minutes after the chemo, her diaper was red. Thankfully, we were told to expect this, or else I would have frantically been hitting the nurse call button. We are supposed to wear gloves when we change her from now on since the drugs are secreted in the urine.
The last order of business at the hospital was her H1N1 vaccine. This poor child has been covered head to toe in band aids, but she takes them like a champ!
The nurse removed the needle from the port and we set off for home, only to find I-40 went from 4 lanes to 1. After a seemingly long journey back, Eve ran inside and put on Natalie's ballet tutu and danced around the house. We finally put her down a little while ago in our room and hope that she can make it through the night without too much nausea.
1 down, 5 to go.
Matt and I have been overwhelmed with the support we have been receiving. With flu season underway, this is a particularly hard time to be immuno-compromised. We will miss visiting with people but know that it is in Eve's best interest to be extra-vigilant and keep her healthy while she goes through this treatment.
Thank you for keeping our family in your thoughts. We are so happy to be back home tonight and can't wait to wake up in the morning to be surrounded by all of our children! (It would be nice if they slept in a bit, though.)
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