The knife is found.
Apparently we have too big of a knife collection, because it slipped in between the knife trays in the drawer.
I feel bad that I told Nat we might all get taken away by the police, but on the flip side, see the potential of such interrogation techniques in the future.
Monday, January 11, 2010
Sunday, January 10, 2010
Downtime.
There are some nights when Matt and I just look at each other and know we are due for one of my all-time favorite activities: eating on the couch.
Oh yeah, I'm talking about making some high-crumb snacks, killing the lights, turning on a non-animated movie, and going numb while we watch big people on our small tv. No Wiggles, no Snow White, and absolutely nothing PG. We can eat in the living room AND watch grown-up things AND stay up late. We can watch Jack Black fart all night long if we really want to! One of those nights where your brain is whimpering, Help! It's dark in here.
This is now a fairly good date night when you've crossed that line into adulthood. I knew I had first crossed it some years ago when I willingly went to bed earlier on a Saturday night than I had the five days preceding it. Because I was tired. And I was tired not from staying up too late the night before because we were all over downtown tripping the light fantastic, drinking martinis and eating tapas, you know, just being generally young and fabulous. I was tired from that big shopping trip I took to the Super-Walmart after dropping the kids off at school. So yeah, there was no going back.
On the night in question, I was ready to pop the popcorn. But, perhaps feeling a bit guilty about all the extra butter and salt I was most definitely going to drench that lite-popcorn in, I decided to eat a grapefruit first in hopes it might carry some good nutritional karma into my gut before the upcoming shock-and-awe campaign. But first...the knife!
Wait, where's the knife?
Ok, seriously. The sharpest serrated knife I own is easy to spot as it has a bright red handle among the black handled knives. Why am I not seeing the knife? Matt, do you see the knife?
Matt does not see the knife. This is a pressing issue. One cannot lose a very sharp knife in a house with children who are hell-bent on maiming Barbies in the name of playing doctor. And so, the interrogation begins.
It is now 10:15 on a Wednesday night, and any hope of relaxing on the couch while eating on autopilot is fading with each passing minute. We go into Nat's room and try to wake her up.
Natalie, did you see the red knife?
Yeah. {snore}
Natalie, where is the red knife?
It's... {snore}
Natalie, where is the red knife??
It went poof. {snore}
Natalie, where is the red knife?!?
Daniel snatched it from me. {snore}
Into Dan's room.
Daniel, have you seen the red knife?
{snore} Natalie did it. {snore}
I can now understand how children can convince themselves of experiencing something that never happened after we pressed Natalie some more. There was a good 30 minutes where we took her downstairs and questioned her about the location of the knife, and it became more obvious that she had no idea what the red knife even was or where it was hiding. But she didn't want to let on.
Where did you put it after you took it to your room?
Umm, I put it under my bed. But it's not there anymore; it went poof.
Where did it go poof to after it was under your bed?
Then it went into Daniel's room under his bed. But it's not there anymore; it went poof.
Where did it go poof to after it was under his bed?
Then it went downstairs onto the couch. But it's not there anymore; it went poof...
(You can probably guess that the knife walked all over the house before it "poofed" into another location. And these locations were all places we had previously asked her about.)
Channeling my best David Caruso, I dramatically lowered my figurative sunglasses and told Natalie the police were going to come and take us away unless we found that knife. She seemed mildly upset by this, but not nearly enough to tell me the location of the knife, if in fact she might have known where it was at all. So, once I added that she would be taken away to live in another house (horrible parenting skillz, I know! But it was almost midnight and my judgment was lackluster, at best), her face crumpled up into the most pathetic thing I've ever seen, even in a Hallmark movie. She admitted she had no idea where it was but begged us to find it before the police came.
We put Nat back in her bed, and after ransacking the house for two hours, decided to check the trashcan. It was the only place it could be. And there we were, both in our pajamas and chemo gloves, in the middle of the night, rifling through crap that had been marinating in the outside trashcan for a few days, in search of this damn knife. In the garage. When it was 19 degrees outside. And guess what? It was just as gross as you might guess. And no sign of the knife.
We called it quits and went to bed. So much for a relaxing night-in.
The first thing Nat did when she woke up was run to Dan's room and say, "We have to find the knife before the police take Mommy and Daddy away!"
And Daniel responded, "What knife?"
It's now been four nights since the knife went missing, and luckily no one has been hurt or taken away by the police. It's quite the unsolved mystery. Paging the ghost of Robert Stack...the knife is untouchable! (There's a two-fer for you.)
Well, at the insistence of my mother, we went out to a movie last night. Pro: we got to leave the house. Con: we had to wear real clothes instead of pajamas. But, Avatar in 3D was completely amazing and well worth the first hour of the movie I spent trying not to throw up. This was a movie of the future, while the Walk, Do Not Run warning before the film started was clearly from 1990. Maybe they keep that old thing around to make each movie seem extra modern in comparison, no matter how many times Jennifer Aniston remakes the same romantic comedy.
As the credits rolled, the gentleman next to me started to wax poetic about how unrealistic the military's tracking software (OF THE FUTURE) was. Because the other stuff about the 10-foot tall blue creatures who fly on mountain banshees was apparently spot-on.
Oh yeah, I'm talking about making some high-crumb snacks, killing the lights, turning on a non-animated movie, and going numb while we watch big people on our small tv. No Wiggles, no Snow White, and absolutely nothing PG. We can eat in the living room AND watch grown-up things AND stay up late. We can watch Jack Black fart all night long if we really want to! One of those nights where your brain is whimpering, Help! It's dark in here.
This is now a fairly good date night when you've crossed that line into adulthood. I knew I had first crossed it some years ago when I willingly went to bed earlier on a Saturday night than I had the five days preceding it. Because I was tired. And I was tired not from staying up too late the night before because we were all over downtown tripping the light fantastic, drinking martinis and eating tapas, you know, just being generally young and fabulous. I was tired from that big shopping trip I took to the Super-Walmart after dropping the kids off at school. So yeah, there was no going back.
On the night in question, I was ready to pop the popcorn. But, perhaps feeling a bit guilty about all the extra butter and salt I was most definitely going to drench that lite-popcorn in, I decided to eat a grapefruit first in hopes it might carry some good nutritional karma into my gut before the upcoming shock-and-awe campaign. But first...the knife!
Wait, where's the knife?
Ok, seriously. The sharpest serrated knife I own is easy to spot as it has a bright red handle among the black handled knives. Why am I not seeing the knife? Matt, do you see the knife?
Matt does not see the knife. This is a pressing issue. One cannot lose a very sharp knife in a house with children who are hell-bent on maiming Barbies in the name of playing doctor. And so, the interrogation begins.
It is now 10:15 on a Wednesday night, and any hope of relaxing on the couch while eating on autopilot is fading with each passing minute. We go into Nat's room and try to wake her up.
Natalie, did you see the red knife?
Yeah. {snore}
Natalie, where is the red knife?
It's... {snore}
Natalie, where is the red knife??
It went poof. {snore}
Natalie, where is the red knife?!?
Daniel snatched it from me. {snore}
Into Dan's room.
Daniel, have you seen the red knife?
{snore} Natalie did it. {snore}
I can now understand how children can convince themselves of experiencing something that never happened after we pressed Natalie some more. There was a good 30 minutes where we took her downstairs and questioned her about the location of the knife, and it became more obvious that she had no idea what the red knife even was or where it was hiding. But she didn't want to let on.
Where did you put it after you took it to your room?
Umm, I put it under my bed. But it's not there anymore; it went poof.
Where did it go poof to after it was under your bed?
Then it went into Daniel's room under his bed. But it's not there anymore; it went poof.
Where did it go poof to after it was under his bed?
Then it went downstairs onto the couch. But it's not there anymore; it went poof...
(You can probably guess that the knife walked all over the house before it "poofed" into another location. And these locations were all places we had previously asked her about.)
Channeling my best David Caruso, I dramatically lowered my figurative sunglasses and told Natalie the police were going to come and take us away unless we found that knife. She seemed mildly upset by this, but not nearly enough to tell me the location of the knife, if in fact she might have known where it was at all. So, once I added that she would be taken away to live in another house (horrible parenting skillz, I know! But it was almost midnight and my judgment was lackluster, at best), her face crumpled up into the most pathetic thing I've ever seen, even in a Hallmark movie. She admitted she had no idea where it was but begged us to find it before the police came.
We put Nat back in her bed, and after ransacking the house for two hours, decided to check the trashcan. It was the only place it could be. And there we were, both in our pajamas and chemo gloves, in the middle of the night, rifling through crap that had been marinating in the outside trashcan for a few days, in search of this damn knife. In the garage. When it was 19 degrees outside. And guess what? It was just as gross as you might guess. And no sign of the knife.
We called it quits and went to bed. So much for a relaxing night-in.
The first thing Nat did when she woke up was run to Dan's room and say, "We have to find the knife before the police take Mommy and Daddy away!"
And Daniel responded, "What knife?"
It's now been four nights since the knife went missing, and luckily no one has been hurt or taken away by the police. It's quite the unsolved mystery. Paging the ghost of Robert Stack...the knife is untouchable! (There's a two-fer for you.)
Well, at the insistence of my mother, we went out to a movie last night. Pro: we got to leave the house. Con: we had to wear real clothes instead of pajamas. But, Avatar in 3D was completely amazing and well worth the first hour of the movie I spent trying not to throw up. This was a movie of the future, while the Walk, Do Not Run warning before the film started was clearly from 1990. Maybe they keep that old thing around to make each movie seem extra modern in comparison, no matter how many times Jennifer Aniston remakes the same romantic comedy.
As the credits rolled, the gentleman next to me started to wax poetic about how unrealistic the military's tracking software (OF THE FUTURE) was. Because the other stuff about the 10-foot tall blue creatures who fly on mountain banshees was apparently spot-on.
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?
Thursday, December 31, 2009
Happy New Year's Eve, Eve!
No chemo today, on account of Eve's ANC being 364 (up from 304 two days ago). In order to get the Doxorubicin and Dactinomycin, she will need an ANC of 750 or more. Thankfully the transfusion did a good job- her hemoglobin was 9.8. Oh well...we will try again Monday. What can you do?
Tomorrow marks the start of a new year! Here's to reaching our out-of-pocket all over again...
At least we can pay with our American Express and get rewards points. We should be able to redeem them for a small boat by the end of the year.
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.
Tuesday, December 22, 2009
Size Matters
Daniel wanted to come to the pediatrician with Eve yesterday. He was amazed by how well she handled her finger stick. Jeez, I prick my finger eight times a day and no one gets excited around here!
Eve's ANC is on the rise- it's up to 462 from 200 on Friday. Her hemoglobin was holding steady at 8.2, so no transfusion today. We do need to arrive at the clinic an hour earlier on Christmas Eve to allow some time in case she needs to be transfused before chemo. Unlikely, says the nurse, but you just never know. So basically, expect the unexpected. But if I'm expecting it, doesn't that make it expected? Be damned, Murphy and your law! I'm going to expect a speedy clinic day on Thursday.
One thing not to expect is that anyone else is going to look after your child as well as you will. It's at times a frightening realization to know that you are IT. Seriously, where did all these kids come from? I'm too young for this responsibility! I didn't go to medical school! I was a liberal arts major!!
Take, for example, the medicines your pediatrician prescribes to your young one to fight off an infection. I've never questioned it before. I just shake up that big pink bottle of amoxicillin and dispense to open mouths as written. But the next time the pharmacist asks, "Do you have any questions?", I will start with this one:
ARE YOU SURE THIS IS RIGHT?!? [This has been edited many times and it's as nice as I can word it right now.]
Eve is supposed to get 3.75 ml of Septra twice a day, every Monday, Tuesday, and Wednesday, to prevent a type of pneumonia that children undergoing chemo tend to develop. Running low on this concoction, the doctor faxes a script to Medco (the mail-away pharmacy). What arrived seemed a bit different. The label reads, "Take 0.75 ml twice a day, every Monday, Wednesday, and Friday." Interesting. This little bottle is a three-month supply, huh? I guess it's super-concentrated and the doctors want it spread out over the week now?
No.
Human errors happen. But it's times like these that I'd like robots as Eve's pharmacists. Robots who have been programmed by other robots. Domo Arigato, Medco Roboto!
Speaking of machines, do you know there are programs out there on the internets that will predict how tall your child will be at age 18? You simply enter in your child's sex, height, weight, age, and the height of both mother and father.
According to the calculator I used at BabyCenter.com, Natalie will be 6'0", Daniel will be 6'3", and Eve will be...
drumroll please...
5 feet, 3 inches. We knew she was our Maggie Simpson! (Maybe Daniel won't be an entire foot taller than her on account of that Nasonex, though.)
Eve's ANC is on the rise- it's up to 462 from 200 on Friday. Her hemoglobin was holding steady at 8.2, so no transfusion today. We do need to arrive at the clinic an hour earlier on Christmas Eve to allow some time in case she needs to be transfused before chemo. Unlikely, says the nurse, but you just never know. So basically, expect the unexpected. But if I'm expecting it, doesn't that make it expected? Be damned, Murphy and your law! I'm going to expect a speedy clinic day on Thursday.
One thing not to expect is that anyone else is going to look after your child as well as you will. It's at times a frightening realization to know that you are IT. Seriously, where did all these kids come from? I'm too young for this responsibility! I didn't go to medical school! I was a liberal arts major!!
Take, for example, the medicines your pediatrician prescribes to your young one to fight off an infection. I've never questioned it before. I just shake up that big pink bottle of amoxicillin and dispense to open mouths as written. But the next time the pharmacist asks, "Do you have any questions?", I will start with this one:
ARE YOU SURE THIS IS RIGHT?!? [This has been edited many times and it's as nice as I can word it right now.]
Eve is supposed to get 3.75 ml of Septra twice a day, every Monday, Tuesday, and Wednesday, to prevent a type of pneumonia that children undergoing chemo tend to develop. Running low on this concoction, the doctor faxes a script to Medco (the mail-away pharmacy). What arrived seemed a bit different. The label reads, "Take 0.75 ml twice a day, every Monday, Wednesday, and Friday." Interesting. This little bottle is a three-month supply, huh? I guess it's super-concentrated and the doctors want it spread out over the week now?
No.
Human errors happen. But it's times like these that I'd like robots as Eve's pharmacists. Robots who have been programmed by other robots. Domo Arigato, Medco Roboto!
Speaking of machines, do you know there are programs out there on the internets that will predict how tall your child will be at age 18? You simply enter in your child's sex, height, weight, age, and the height of both mother and father.
According to the calculator I used at BabyCenter.com, Natalie will be 6'0", Daniel will be 6'3", and Eve will be...
drumroll please...
5 feet, 3 inches. We knew she was our Maggie Simpson! (Maybe Daniel won't be an entire foot taller than her on account of that Nasonex, though.)
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