Just received MRI results from Dr. O:
Nathan's tumor has shrunk!! After only two months!! It has gone from 18 x 14 cc to 14 x 13 cc!! We were told that shrinkage was probably not in the cards, that the goal was to keep it from growing, and yet - IT SHRUNK!!
Who has two thumbs and and wishes she could hug the stuffing out of every single one of you? Yeah, this girl.
Friday, March 25, 2011
Wednesday, March 23, 2011
For a Libra, I'm pretty lame at this.
One of the hardest things about being the mom of a kid with cancer (besides introducing that particular phrase into your vocabulary) is figuring out how to balance treating him like a kid and treating him like a kid with cancer. From Day 1 my battle cry has been, "This is not the story of his life. This is the story of 18 months of his life." As such, he has gotten precious little in the way of special treatment around the house and at school. Unconsciously, I think I wanted him to get the message that while this is a crappy situation, it is not the end of the world - kind of like when you're in the hospital, the signal to panic is when everyone you know shows up at your bedside. It's the "If you don't get much special treatment, you must not be too bad off" line of thinking.
Of course, allowances have been made. If he doesn't like the looks of dinner, Nathan chugs an Ensure shake to keep his weight up. If he's tired, we pry Clare off of him and let him sneak off to bed early. He has a whole list of accommodations at school including being able to wear a hat or have a snack in class or take a rest in the clinic. But I have tried my best to keep things as normal as possible and to keep bringing the wicked and evil back to stepmothering.
For Nathan, this means that he still has kitchen clean-up every other day, two rooms to clean on Saturday morning, and weekly laundry duty split with Matt. He still gets fussed at for chewing with his mouth open and for spending too much time on video games. And with apologies to Erich Segal, chemo does not mean never having to do your homework. He is still being held accountable at home and at school, and that's as it should be.
Until, of course, it isn't. Tonight, the Teflon Kid is plumb wore out physically, emotionally, and every other kind of -ly you got. Tonight, the stress is not rolling off his back, it's seeping into his pores, and it's insidious. Tonight, he's a seabird covered in oil, looking at Dan and me and asking why we let this happen. Tonight, he's got a pass because there are zombies to slay, chicken fingers to chew like a cow, and a movie to watch - and that damn homework will just have to get to the end of the line.
Of course, allowances have been made. If he doesn't like the looks of dinner, Nathan chugs an Ensure shake to keep his weight up. If he's tired, we pry Clare off of him and let him sneak off to bed early. He has a whole list of accommodations at school including being able to wear a hat or have a snack in class or take a rest in the clinic. But I have tried my best to keep things as normal as possible and to keep bringing the wicked and evil back to stepmothering.
For Nathan, this means that he still has kitchen clean-up every other day, two rooms to clean on Saturday morning, and weekly laundry duty split with Matt. He still gets fussed at for chewing with his mouth open and for spending too much time on video games. And with apologies to Erich Segal, chemo does not mean never having to do your homework. He is still being held accountable at home and at school, and that's as it should be.
Until, of course, it isn't. Tonight, the Teflon Kid is plumb wore out physically, emotionally, and every other kind of -ly you got. Tonight, the stress is not rolling off his back, it's seeping into his pores, and it's insidious. Tonight, he's a seabird covered in oil, looking at Dan and me and asking why we let this happen. Tonight, he's got a pass because there are zombies to slay, chicken fingers to chew like a cow, and a movie to watch - and that damn homework will just have to get to the end of the line.
Friday, March 18, 2011
Are we there yet?
I was diagnosed with ADD about 12 years ago. Not ADHD, mind you. There is no hyperactivity component whatsoever, just a attention system that is out of whack. And I think this is why I am an incredibly useful person in an acute crisis situation. Funerals are my specialty. I cowboy up, I do what has to be done, I do not cry, I am goal-oriented - I dare say I am Cylon-esque in my focus. I can be Wonder Woman successfully for about a month, and then I am ready for something else. Long haul? Yeah, not so much.
Guess what? A month of this crap was up a month ago. I'm not so useful anymore. I'm damn sure not as entertaining. I am bitter and angry and tired and hateful and SO ready for this to be over. If self-pity were an Olympic sport, I could medal for the USA. I am in control of absolutely nothing, and I hate that. And if one more person tells me that God only sends us what we can handle and that He knows what big shoulders I have, I am going to point out in no uncertain terms that She has me confused with someone else - I am the one with the big ASS.
Nathan is struggling. Here's what I unloaded on Hope via email yesterday:
N had a horrible day at chemo yesterday - Dan called me at 10:30, and they were both wrecks. First off, N had lost just over 3 pounds in a week. Then, his port was blocked, so they had to stick his finger for the blood draw, and he was dehydrated, so that was awful. Then he showed them the enormous canker sore inside his mouth, and they scraped it for a tissue sample to make sure it's not the cold sore type of herpes - TWICE. Then while they did the physical exam, they noticed that not only does his left eyelid not close all the way anymore due to the tumor, his eyes were pink and gunky, so they diagnosed pinkeye. He had cried three times by the time Dan called me.
As it turns out, it's not herpes, the pinkeye antibiotic is working, and N is learning to drink water like I drink Diet Coke.
It just sucks right now, and I HATE telling you all that because you all have been some every kind of wonderful, and we get tangible and intangible reminders of your love and concern and support every week, and I need to focus on all the good that has come out of this. It's just that lately, I have not been able to do that. I am considering putting up posters around town that say "Have you seen my sh*t? 'Cause I have lost it. Call 1-800-THIS-SUX."
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| This poster is pretty awesome, too. |
I think I need to have dinner with some friends. Maybe Ben and Jerry or Big Olaf.
Wednesday, February 16, 2011
Man down. Send help.
Nathan is losing his hair.
You know how something can be right in front of your face, and you still don't see it? I have been not seeing this development for a couple of weeks, and yesterday, I couldn't not-see it anymore. More to the point, neither could Nathan.
It was a rough, rough, rough, rough night.
For a chemo patient, hair loss is an unmistakable sign of your other-ness. You're not like everyone else who is healthy. You're different, very obviously so. And for a chemo patient in middle school, being different can be a fate worse than death. This is what is weighing most heavily on our boy's mind, the fear that he will be a target for mean kids.
As a teacher, I know that some of those mean kids also feel different or ugly or left out or just plain wrong. They try to cope by drawing attention to others whose brokenness is more visible. "If everyone is looking at that kid," they figure, "they're not looking at me and at everything that is wrong with me." And as a teacher, I feel for them. Middle school sucks, their brains are not fully formed, they are trapped in a hurricane of hormones, their families don't understand them, yadda yadda yadda.
BUT.
As a mom, if some mean kids picks on MY kid? I hope God has mercy on them, because I sure as hell won't.
So, this is one of the hard days. Rationally, I know that the staff at Nathan's school is going to do everything possible to ease his way during this part of the journey. I know that he has good friends who are his friends, no matter what. I know that, given the chance, most kids will rise to the occasion and do the right thing and treat his balding melon as no big deal. But I am still scared, and so is Nathan. So, I'm doubling up on my prayers and asking Jon Jetton to watch over my boy - he walked this walk, and many of you walked it with him. I'm asking for the rough places to be made plain.
And if they're not, I may be back to ask for bail money.
You know how something can be right in front of your face, and you still don't see it? I have been not seeing this development for a couple of weeks, and yesterday, I couldn't not-see it anymore. More to the point, neither could Nathan.
It was a rough, rough, rough, rough night.
For a chemo patient, hair loss is an unmistakable sign of your other-ness. You're not like everyone else who is healthy. You're different, very obviously so. And for a chemo patient in middle school, being different can be a fate worse than death. This is what is weighing most heavily on our boy's mind, the fear that he will be a target for mean kids.
As a teacher, I know that some of those mean kids also feel different or ugly or left out or just plain wrong. They try to cope by drawing attention to others whose brokenness is more visible. "If everyone is looking at that kid," they figure, "they're not looking at me and at everything that is wrong with me." And as a teacher, I feel for them. Middle school sucks, their brains are not fully formed, they are trapped in a hurricane of hormones, their families don't understand them, yadda yadda yadda.
BUT.
As a mom, if some mean kids picks on MY kid? I hope God has mercy on them, because I sure as hell won't.
So, this is one of the hard days. Rationally, I know that the staff at Nathan's school is going to do everything possible to ease his way during this part of the journey. I know that he has good friends who are his friends, no matter what. I know that, given the chance, most kids will rise to the occasion and do the right thing and treat his balding melon as no big deal. But I am still scared, and so is Nathan. So, I'm doubling up on my prayers and asking Jon Jetton to watch over my boy - he walked this walk, and many of you walked it with him. I'm asking for the rough places to be made plain.
And if they're not, I may be back to ask for bail money.
Thursday, February 10, 2011
No news is good news. Really.
So Elizabeth and Melissa have both let me know that while it may have been OK for me to be a slug about keeping in touch with people in my pre-blogger-celebrity days before Nathan was diagnosed, I now have a fan base an adoring public a compelling reason to keep my friends informed about how our journey is progressing.
So here's how it's going. I worked last year with a woman who was battling some pretty heavy-duty personal and professional issues. And regardless of what new fresh hell visited her on a given day, her standard response to "How are you?" was "I am BLESSED and HIGHLY FAVORED, my SISTER!!" That is how we're doing. We are ridiculously blessed and highly favored.
Nathan has completed 5 chemo treatments, and his side effects have been as minimal as you can imagine. On Nathan's I-Feel-Like-Crap-o-Meter, getting braces beat chemo side effects by leaps and bounds. He has not lost the first strand of hair, and according to the nurses, if it hasn't happened by now, it won't. Nausea makes a half-hearted appearance infrequently, but it retreats in the face of meds within a few minutes. Nathan's experienced a little loss of appetite, and he lost of couple of pounds one week, but we have discovered Carnation Instant Breakfast and whole milk, and that is a hit (regular dinner vs. chocolate milkshake? hmm, let me think about this...). The cocktail Nathan receives can cause some hearing loss, but he passed his first audiogram yesterday with flying colors ("superior hearing," thank you very much, so there will be no more of this "Sorry Mom, I didn't hear you tell me to ______.") He is having the easiest imaginable ride through Chemoville, and we are shocked and awed (but in the good way).
As for Dan and me, our ride is a little more like a roller coaster. On up days, we look at Nathan, and we shake our heads in amazement at our Teflon boy and his ability to always, always see the bright side of any situation. On up days, we open envelopes stuffed with gift cards and Mass cards and thinking-of-you cards, and we marvel at the thoughtfulness and generosity of our friends. On up days, we hear from characters from our past lives who bowl us over with love and support and brisket and origami cranes and the greatest hits of the 80s and prizes of all shapes and sizes, and we wonder what we ever did in those past lives to deserve such enduring friendship.
Then there are down days. On down days, Grouchy, Bitchy, Impatient, Thoughtless, Selfish, Self-Pitying, and Congested stop by, and they are nowhere near as fun as the other Seven Dwarves. On down days, we poison the pot of what-we-have with toxic amounts of what-we-don't-have. On down days, we forget that we are blessed and highly favored and loved to pieces by all of you and by the One whose strength is made perfect in our weakness.
Those down days are fierce, but they will be no match for the latest elaborate black-op our Angels have cooked up. Next weekend, Dan and I are headed to Cedar Key for the weekend - without the kids! The covert team behind this surprise has arranged for us to stay in a friend's home and eat at the best spots on the island, while Matt and Nathan hang with a Big Cousin, and Clare heads to Camp Nana & Papa. I'm so excited, and I just can't hide it - honey, I am all three Pointer Sisters rolled into one.
So, that's how we're doing. How are you?
Those down days are fierce, but they will be no match for the latest elaborate black-op our Angels have cooked up. Next weekend, Dan and I are headed to Cedar Key for the weekend - without the kids! The covert team behind this surprise has arranged for us to stay in a friend's home and eat at the best spots on the island, while Matt and Nathan hang with a Big Cousin, and Clare heads to Camp Nana & Papa. I'm so excited, and I just can't hide it - honey, I am all three Pointer Sisters rolled into one.
So, that's how we're doing. How are you?
Tuesday, January 25, 2011
An Embarrassment of Riches
In the mail yesterday:
* Two "thinking of you" cards from a woman I have never met and her son, a Cub Scout; she heard about us third-hand and wanted to let us know their troop is praying for Nathan. I hope Josh receives a badge for huge-heartedness and generosity of spirit, and I hope the badge features a gorilla picking its nose, just like one of the cards.
* A Mass card and a Publix gift card from a dear man we know from church and his adult son; they lost a wonderful wife and mother to cancer last year. They know this walk, and they are willing to take it with us.
* A Kindle from someone who knows what it's like to sit for hours in a hospital room with your son, trying to stay positive and non-panicky and productively occupied. She actually fussed at me for adding her name to the Wall of Angels and will probably fuss at me for mentioning it here because she is not one to seek glory for herself, but I will take my chances.
* A framed poem written for me by a long-admired friend; she is who I want to be when I grow up. I cannot do the poem or the poet justice with my own words tonight, so you will have to go read her work at her beautiful blog.
And the two wonderful men pictured below - the ones who, in my mind, will always be 17 years old? The ones I looked up to in high school? Who are even more look-uppable-to these days? Those dudes get their own post tomorrow.
* Two "thinking of you" cards from a woman I have never met and her son, a Cub Scout; she heard about us third-hand and wanted to let us know their troop is praying for Nathan. I hope Josh receives a badge for huge-heartedness and generosity of spirit, and I hope the badge features a gorilla picking its nose, just like one of the cards.
* A Mass card and a Publix gift card from a dear man we know from church and his adult son; they lost a wonderful wife and mother to cancer last year. They know this walk, and they are willing to take it with us.
* A Kindle from someone who knows what it's like to sit for hours in a hospital room with your son, trying to stay positive and non-panicky and productively occupied. She actually fussed at me for adding her name to the Wall of Angels and will probably fuss at me for mentioning it here because she is not one to seek glory for herself, but I will take my chances.
* A framed poem written for me by a long-admired friend; she is who I want to be when I grow up. I cannot do the poem or the poet justice with my own words tonight, so you will have to go read her work at her beautiful blog.
And the two wonderful men pictured below - the ones who, in my mind, will always be 17 years old? The ones I looked up to in high school? Who are even more look-uppable-to these days? Those dudes get their own post tomorrow.
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| He's covered in Awesome Sauce. |
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| So is he. |
My heart is full, my mascara is all over my face, and I may very well electrocute myself if I keep crying on my laptop. It will be all your fault.
I hope you're proud of yourselves.
Love you all.
Wednesday, January 19, 2011
Maybe he IS Iron Man.
You know how you can tell when it's the day Nathan has had chemo? You CAN'T. Seriously. We have just returned from dinner at Applebee's (danke, Cathy and Carsten! xo), where he put down his usual chicken tenders, fries, and Sprite - and as I type, he is packing his lunch for tomorrow: "Um, can I bring some of those chocolates to school? Tell your friend they are really good!" (thank you, Kara! xo) He seems to have a cast-iron stomach so far, and from what the nurses have told us, if the drugs haven't made him sick yet, they probably won't.
All his numbers looked good again today, and especially for the future Dr. Kirkpatrick of Vienna, Virginia, here's a little more detail on what the doctors look at and why.
* Hemoglobin: This is the protein in red blood cells that's full of iron and carries oxygen throughout the body. Patients undergoing chemo need to have super-efficient oxygen transport because lack of oxygen actually stimulates the growth of the cancer cells and makes them resistant to the chemo. Weird, right?
* Platelets: These are the little sticky fellows in blood that make it clot - especially useful for boys like Nathan whoregularly run into things lead an active lifestyle. They split and reproduce quickly in order to make new cells, and that makes them susceptible to the effects of chemotherapy. These drugs work best on rapidly dividing cells. This makes chemo effective on cancer cells, but other rapidly dividing cells (in your blood, hair, and the lining of your GI tract) can end up as collateral damage.
* Neutrophils: The Marines of the bloodstream, these bad-ass white blood cells are the first ones on the scene when infection hits (can you tell the boys are playing "Call of Duty" while I'm blogging?) If there is a major malfunction with Nathan's white blood cells, he'll be far more likely to pick up infections - and that could mean hospitalization and postponement of chemo to allow him to get better.
So basically, a good blood count means that Nathan's body is repairing itself sufficiently between chemo treatments.
Dan tells me he managed to get a few photos today - look for them this weekend, along with more Q & A.
Have we told you lately that we love you? That's not just the 2-for-1 Applebee's happy hour talking. We really do love you.
All his numbers looked good again today, and especially for the future Dr. Kirkpatrick of Vienna, Virginia, here's a little more detail on what the doctors look at and why.
* Hemoglobin: This is the protein in red blood cells that's full of iron and carries oxygen throughout the body. Patients undergoing chemo need to have super-efficient oxygen transport because lack of oxygen actually stimulates the growth of the cancer cells and makes them resistant to the chemo. Weird, right?
* Platelets: These are the little sticky fellows in blood that make it clot - especially useful for boys like Nathan who
* Neutrophils: The Marines of the bloodstream, these bad-ass white blood cells are the first ones on the scene when infection hits (can you tell the boys are playing "Call of Duty" while I'm blogging?) If there is a major malfunction with Nathan's white blood cells, he'll be far more likely to pick up infections - and that could mean hospitalization and postponement of chemo to allow him to get better.
So basically, a good blood count means that Nathan's body is repairing itself sufficiently between chemo treatments.
Dan tells me he managed to get a few photos today - look for them this weekend, along with more Q & A.
Have we told you lately that we love you? That's not just the 2-for-1 Applebee's happy hour talking. We really do love you.
Monday, January 17, 2011
Nathan 1, Chemo 0
We were dreading this weekend and the possible side effects that might make an appearance. And guess what? Aside from a little jaw pain and fatigue from the vincristine, Nathan is F-I-N-E. No nausea or vomiting or GI issues at all. He is, in fact, eating like a standard issue 13 year-old boy, (i.e. "Is there any more pizza??" "Hey, is that Chex Mix??" "Where did the brownies come from??" "If Clare isn't going to finish that, can I have it??"). We know that every week will be different, and this may be only a temporary reprieve, but you know what? We'll take it.
And now, reader questions:
Q. Isn't ACH a depressing place? All those sick kids...
A. Not just no, my friends - HELL, NO. I am filled with gratitude every time I see a child at ACH because he or she is receiving the best care possible from compassionate and skilled people who are dedicated to healing little ones. Of course, I am also the rare mommy who did not cry when her baby received shots and howled - I thank God I live in a time when my child can be protected from diseases that used to kill children. What makes me cry is thinking of the kids who need medical care and don't receive it.
Q. Can we see a photo of the actual chemo process?
A. You bet. We were a little slow on the draw last week (thanks, Xanax!), but this week, Dan is planning to take photos and show you how not-scary this is, compared to what the imagination can drum up.
Q. So, how about the hot oncologist? You're taking photos of her, too?
A. As long as she's cool with it.
Thanks for keeping us company - keep those prayers and good thoughts coming!
MA
And now, reader questions:
Q. Isn't ACH a depressing place? All those sick kids...
A. Not just no, my friends - HELL, NO. I am filled with gratitude every time I see a child at ACH because he or she is receiving the best care possible from compassionate and skilled people who are dedicated to healing little ones. Of course, I am also the rare mommy who did not cry when her baby received shots and howled - I thank God I live in a time when my child can be protected from diseases that used to kill children. What makes me cry is thinking of the kids who need medical care and don't receive it.
Q. Can we see a photo of the actual chemo process?
A. You bet. We were a little slow on the draw last week (thanks, Xanax!), but this week, Dan is planning to take photos and show you how not-scary this is, compared to what the imagination can drum up.
Q. So, how about the hot oncologist? You're taking photos of her, too?
A. As long as she's cool with it.
Thanks for keeping us company - keep those prayers and good thoughts coming!
MA
Thursday, January 13, 2011
What It Looked Like
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| Mom's reading, and Nathan is watching TV. Just another day. |
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| Pudding makes everything better. |
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| Robert Downey Jr. dropped by. |
Wednesday, January 12, 2011
And so we begin.
Live blogging today during Nathan's first chemotherapy treatment:
8:53 am Apply the lidocaine cream to Nathan's chest to numb the skin above the port. Realize I would not wish this moment on anyone, ever.
9:03 am Check Facebook profile. Cry and giggle all the same time.
9:11 am Break up fight between Dan and Nathan over who gets to use the iPod first. Suspect it will not be the last time.
9:37 am En route to ACH, discover that the finger I used to apply the lidocaine is now numb! Speculate out loud on what it would be like to pick my nose with a numb finger.
10:10 am Check in at ACH. Vitals taken. First magazine of the day stolen from lobby.
10:30 am Nurse Sonja arrives to take blood via the port; this involves sticking a needle into a target about the size of a quarter. Dan's offer to give it a try as he is good at darts is politely but firmly rejected. Nathan's chest is as numb as my finger - YAY - so it's a painless procedure, and he is back to his iPod by 10:40.
11:00 am Physical exam by Dr O, who looks like she's about 25 years old and is dressed to kill and deserves her own blog post - she is that awesome. She is very matter-of-fact as she gives Nathan the standard neuro mini-exam. Dr. O is looking for asymmetry in his face and body, so she asks him to squeeze his eyes shut, wiggle his eyebrows, stick out his tongue and wiggle it from side to side, squeeze her hands in his. Nothing is out of order, so she reviews the day's plan with us and heads out.
11:17 am Nurse Sonja is back with the results of Nathan's complete blood count (CBC). The stats we are concerned with are hemoglobin, platelets, and a subcategory of white blood cells called neutrophils, and all of them are excellent. Since chemo does a number on the immune system, this will be a weekly routine to monitor for infections.
11:28 am "Pee in this cup." "Um, I don't have to go." "Well, try anyway, or I'll have to track you down and make you pee later. And leave the iPod here." I love Nurse Sonja.
11:35 am It's showtime! Nurse Sonja flushes the port with saline to make sure it's clean from the blood draw, and in goes the first drug, Vincristine. Possible side effects include constipation, thus a lively conversation on stool softeners ensues. Nathan iPods through the entire episode which lasts all of 2 minutes, and says, "Is that it?"
12:22 pm On to the infusion lab, where drug #2 will be administered. This is going to be a more lengthy procedure, so the first step is to order room service for lunch. Nathan asks for pepperoni pizza, fries, a salad, chocolate pudding, and Coke; I am so hungry, I look at Dan's arm and see London broil.
12:30 pm Vitals again. Then, Nathan is shown to his chemo cubicle. It's about 10 by 12 and features a chair which looks like a hospital version of a La-Z-Boy. He has his own TV monitor programmed with movies, and this finally distracts his attention from the iPod. He gets comfy with a blanket and pillow, finds Iron Man 2, and barely notices when Dan and I ask if it's OK for us to get some lunch. We get cleared by the patient and by the nurses who are still waiting for the OK from billing to begin treatment.
1:15 pm We're back from lunch, and as cafeterias go, it was pretty nice. Nathan has an enormous tray of food in front of him, and is plowing through it as his anti-nausea drug is administered through his port. Ah, the ferrous smell of irony.
2:15 pm Enter Carboplatin, the other ingredient in the cocktail. If Nathan gets nauseated later, this will be the responsible party. The nurse handling the drug is wearing a surgical gown and blue gloves; apparently, this stuff is one step below battery acid in terms of getting it on your skin. She hangs the bag on his IV drip, checks that he's comfy, and estimates that it will take about an hour to empty. Dan starts taking photos, and I start wondering if there are scrapbook materials with a chemo theme.
3:15 pm The bag is empty, and all that's left to do is make sure there is no immediate adverse reaction. We hang out for another half-hour before the nurses disconnect Nathan and argue over which one he likes best. He feels fine - a little tired, but not nauseated at all, thank God. We get our instructions for follow-up, and they're rather lengthy. If he gets constipated, throw some Miralax in him. If he gets nauseated, throw some Zofran in him. If he's achy, give him one dose of Tylenol, but no more - if he gets an infection, the Tylenol could mask the fever, and then we would be headed near Shit Creek. Remember to give him his antibiotics twice a day on Saturday and Sunday as a pre-emptive strike against infection. And yes, he can still do chores on Saturday, and of course he should plan to go to school tomorrow. That is the only time a grimace of pain appears on the boy's face.
4:45 pm We rendezvous in the school board parking lot to pick up Matt, who has spent the afternoon at this best friend's house. Josie, Max's mom, is a lifesaver - Matt will be spending every Wednesday afternoon with them during the course of Nathan's treatment. As Matt gets in the car, Nathan describes the horror of chemo: "And I had my own recliner, and they brought me pizza and fries and Coke and Gatorade, and I had my own TV, and all I had to do was sit there!!" Matt's jaw hits the floor, and he replies, "Talk about a blessing in disguise - AND you get to miss school!"
6:10 pm Dinner arrives, courtesy of my so-wonderful-she-also-deserves-her-own-blog-post friend, Billie-Jo, who delivers a Mexican feast complete with chocolate lava cake. She congratulates Nathan on a successful first day, and he grunts his thanks without looking up from the TV - he is back to protecting the Pentagon from zombies.
And that, my friends, is exactly as it should be.
Thanks for riding along today. We literally could not do this without you.
8:53 am Apply the lidocaine cream to Nathan's chest to numb the skin above the port. Realize I would not wish this moment on anyone, ever.
9:03 am Check Facebook profile. Cry and giggle all the same time.
9:11 am Break up fight between Dan and Nathan over who gets to use the iPod first. Suspect it will not be the last time.
9:37 am En route to ACH, discover that the finger I used to apply the lidocaine is now numb! Speculate out loud on what it would be like to pick my nose with a numb finger.
10:10 am Check in at ACH. Vitals taken. First magazine of the day stolen from lobby.
10:30 am Nurse Sonja arrives to take blood via the port; this involves sticking a needle into a target about the size of a quarter. Dan's offer to give it a try as he is good at darts is politely but firmly rejected. Nathan's chest is as numb as my finger - YAY - so it's a painless procedure, and he is back to his iPod by 10:40.
11:00 am Physical exam by Dr O, who looks like she's about 25 years old and is dressed to kill and deserves her own blog post - she is that awesome. She is very matter-of-fact as she gives Nathan the standard neuro mini-exam. Dr. O is looking for asymmetry in his face and body, so she asks him to squeeze his eyes shut, wiggle his eyebrows, stick out his tongue and wiggle it from side to side, squeeze her hands in his. Nothing is out of order, so she reviews the day's plan with us and heads out.
11:17 am Nurse Sonja is back with the results of Nathan's complete blood count (CBC). The stats we are concerned with are hemoglobin, platelets, and a subcategory of white blood cells called neutrophils, and all of them are excellent. Since chemo does a number on the immune system, this will be a weekly routine to monitor for infections.
11:28 am "Pee in this cup." "Um, I don't have to go." "Well, try anyway, or I'll have to track you down and make you pee later. And leave the iPod here." I love Nurse Sonja.
11:35 am It's showtime! Nurse Sonja flushes the port with saline to make sure it's clean from the blood draw, and in goes the first drug, Vincristine. Possible side effects include constipation, thus a lively conversation on stool softeners ensues. Nathan iPods through the entire episode which lasts all of 2 minutes, and says, "Is that it?"
12:22 pm On to the infusion lab, where drug #2 will be administered. This is going to be a more lengthy procedure, so the first step is to order room service for lunch. Nathan asks for pepperoni pizza, fries, a salad, chocolate pudding, and Coke; I am so hungry, I look at Dan's arm and see London broil.
12:30 pm Vitals again. Then, Nathan is shown to his chemo cubicle. It's about 10 by 12 and features a chair which looks like a hospital version of a La-Z-Boy. He has his own TV monitor programmed with movies, and this finally distracts his attention from the iPod. He gets comfy with a blanket and pillow, finds Iron Man 2, and barely notices when Dan and I ask if it's OK for us to get some lunch. We get cleared by the patient and by the nurses who are still waiting for the OK from billing to begin treatment.
1:15 pm We're back from lunch, and as cafeterias go, it was pretty nice. Nathan has an enormous tray of food in front of him, and is plowing through it as his anti-nausea drug is administered through his port. Ah, the ferrous smell of irony.
2:15 pm Enter Carboplatin, the other ingredient in the cocktail. If Nathan gets nauseated later, this will be the responsible party. The nurse handling the drug is wearing a surgical gown and blue gloves; apparently, this stuff is one step below battery acid in terms of getting it on your skin. She hangs the bag on his IV drip, checks that he's comfy, and estimates that it will take about an hour to empty. Dan starts taking photos, and I start wondering if there are scrapbook materials with a chemo theme.
3:15 pm The bag is empty, and all that's left to do is make sure there is no immediate adverse reaction. We hang out for another half-hour before the nurses disconnect Nathan and argue over which one he likes best. He feels fine - a little tired, but not nauseated at all, thank God. We get our instructions for follow-up, and they're rather lengthy. If he gets constipated, throw some Miralax in him. If he gets nauseated, throw some Zofran in him. If he's achy, give him one dose of Tylenol, but no more - if he gets an infection, the Tylenol could mask the fever, and then we would be headed near Shit Creek. Remember to give him his antibiotics twice a day on Saturday and Sunday as a pre-emptive strike against infection. And yes, he can still do chores on Saturday, and of course he should plan to go to school tomorrow. That is the only time a grimace of pain appears on the boy's face.
4:45 pm We rendezvous in the school board parking lot to pick up Matt, who has spent the afternoon at this best friend's house. Josie, Max's mom, is a lifesaver - Matt will be spending every Wednesday afternoon with them during the course of Nathan's treatment. As Matt gets in the car, Nathan describes the horror of chemo: "And I had my own recliner, and they brought me pizza and fries and Coke and Gatorade, and I had my own TV, and all I had to do was sit there!!" Matt's jaw hits the floor, and he replies, "Talk about a blessing in disguise - AND you get to miss school!"
6:10 pm Dinner arrives, courtesy of my so-wonderful-she-also-deserves-her-own-blog-post friend, Billie-Jo, who delivers a Mexican feast complete with chocolate lava cake. She congratulates Nathan on a successful first day, and he grunts his thanks without looking up from the TV - he is back to protecting the Pentagon from zombies.
And that, my friends, is exactly as it should be.
Thanks for riding along today. We literally could not do this without you.
Saturday, January 8, 2011
Scarred, Shmarred
Just in case you're wondering how our boy is recovering from his procedure yesterday...
Nathan was instructed to take it easy for the next couple of days and let his body regroup. This is VERY difficult for him, as he and Clare spend the weekends pummeling each other in a mostly friendly way (think lion cubs). So when Matt and Clare started tearing through the house this afternoon, Nathan began referring to himself as "Old Mr Jenkins" - whenever they got too close, he yelled, "GET OFF MY LAWN!" and shuffled after them, shaking his fist and muttering darkly.
When asked if he is behind the mysterious goings-on at the amusement park, Nathan had no comment.
Nathan was instructed to take it easy for the next couple of days and let his body regroup. This is VERY difficult for him, as he and Clare spend the weekends pummeling each other in a mostly friendly way (think lion cubs). So when Matt and Clare started tearing through the house this afternoon, Nathan began referring to himself as "Old Mr Jenkins" - whenever they got too close, he yelled, "GET OFF MY LAWN!" and shuffled after them, shaking his fist and muttering darkly.
When asked if he is behind the mysterious goings-on at the amusement park, Nathan had no comment.
Friday, January 7, 2011
Port in a Storm
Just received word from Dan that Nathan's port is installed, and everything went as planned. Nathan is an old pro with sedation and anesthesia, having had MRIs since he was a very wiggly 8 year-old, and he is a very happy little drunk when he comes out of it. According to Dan, Nathan was steady enough to walk out of the building - and then he looked at Dan, smirked, said, "It's not every day you get to ride in a wheelchair!" and made Dan push him up umpteen ramps to get to the car. That's my boy! Why walk when you can ride? They are on their way home, where Nathan plans to spend the afternoon asking for more ginger ale and tomato soup while using his xBox 360 to protect the Pentagon from Nazi zombies (you're welcome, Mr President).
Dan and I are just overwhelmed with the deluge of support you have shown us. Reading all of your comments felt like walking in from a hellish blizzard to God's ski resort and being offered hot baths, fuzzy slippers, Irish coffee, and brownies. While we normally don't like being in debt, we sincerely hope that we never, ever have a chance to repay all of you for your kindness. Thanks, and thanks, and ever thanks.
Love you all,
MA
Dan and I are just overwhelmed with the deluge of support you have shown us. Reading all of your comments felt like walking in from a hellish blizzard to God's ski resort and being offered hot baths, fuzzy slippers, Irish coffee, and brownies. While we normally don't like being in debt, we sincerely hope that we never, ever have a chance to repay all of you for your kindness. Thanks, and thanks, and ever thanks.
Love you all,
MA
Tuesday, January 4, 2011
The beginnings...
PART 1
Mary Ann is one of my very oldest and dearest friends, a true BFF. She and her husband Dan have had more than their share of troubles these last few years and life has thrown them a real cannonball with the latest - their son Nathan has to have eighteen months of chemotherapy for a brain tumor. As a parent I do not want to imagine how painful this would be for me. Perhaps it is living in the south that has done this to me but when the chips are down for someone here we cook. Casseroles and hams, brownies, and soup, I have made it all and delivered them for births, deaths, kids in the hospital; I guess it makes me feel less helpless and more useful. Which is kind of ironic because I don't love to cook or anything but I know that I LOVED having a freezer full of food when I had my daughter Lexie. SO, as I am now in GA and she is in FL I have had this overwhelming feeling of helplessness...how do I support my friend during this incredibly difficult time? How do I show her how much I care and wish I could fix this?
Then it dawned on me that I could still send a meal via a restaurant gift card. And I wondered... would other people want to do this too? And then I thought about our friends who are still in Sarasota - they might be willing to bring a casserole, or ham, or pan of lasagna to Mary Ann, Dan and their family. So I went through our Facebook contacts and sent an email to twenty-odd people and said, "If you wanted to do this I'd like to try and organize it." And WOW.
First Tara Bates Ross and Jennifer Jannopoulo Halloran said, "Of course we'll help." Tara found this website all set up just to organize efforts like this. Taggert set up this blog for her and basically has said he will do as much as he can do for as long as it takes. Philip Reed and Sean McCue said, "We are local and will help in any way you want us to." The responses have brought tears to my eyes so many times, like when Mike said, "The Bucellettes will make Get Better cards for Nathan too." And then there was Kara, "I have already sent chocolate rats but you know I will send more as needed." Alyson, who realized some of this was tricky for me with a toddler and a six year old and offered to help coordinate from afar, and has been in contact with Mary Ann's church and is arranging for them to be included in this effort as well. So many more friends have agreed to participate, Katie and Hope, Cathy and Barb, and our ever amusing and always inappropriate college friend Mark Polner. I hope I haven't forgotten anyone but please know it is just because the response has been so overwhelming and not because you are any less important or wonderful.
At some point my classmates grew up into an AMAZING bunch of kind and caring people. So many of you thanked me for trying to organize this - it is I who thank YOU for making this a reality. And I know this is a LONG story but I have to include in its entirety, the response I got from Jack Byers, because it FLOORED me with his generosity. Then I remembered that in fifth grade Jon Jetton (who died from leukemia) was his best friend and realized that helping kids like Jon is now just part of who he is. I am so incredibly proud that this is how he has channeled that experience and I know Jon is too. The only terrible thing is that I didn't manage to arrange the singing telegram while he was in town because I know it would have been Mary Ann's very favorite Christmas gift. Jack - perhaps a video when you send your contribution...
Chickenshack Jack December 21, 2010 at 12:18pm Reply• Report
I’m a takeout pro, and would like to contribute where/ whenever the need is there.
I don’t know what kind of treatment options are available in SRQ (probably lots), but I’m just a few miles away from Children’s Hospital of Philadelphia (CHOP).
I volunteer there with an outfit called Musicians On Call, and have pretty extensive experience with their oncology ward… which I find to be an incredible place. Between the environment, the technology and the amazing dedication and kindness of the staff I can recommend it highly. A far cry from what Jon had to endure back when we were little, it's an entire hospital built just for pediatrics.
I live alone (ok, I have two cats and some fish) in a house with two guest rooms, and would be happy to open them up to MA, her stepson and her family if they have any interest in considering CHOP as a treatment option.
I'll be in SRQ later this week too, if there's anything I can do in person (ie-casserole delivery, singing telegram, etc) just let me know.
God bless you Jack Byers and promise me we'll make that singing telegram happen at some point. I think you'd approve of Nathan's musical tastes actually...
Part II
So I started thinking... Mary Ann is an elementary school teacher - probably some of her school friends would want to help... and I remembered the name Billie Jo as a teacher pal (and here I confess that I have since wanted to write an Ode to her... even though I am sure she has heard that twenty-two thousand times) from our conversations and from Facebook posts. So I emailed this perfect stranger who turned out to be this lovely, kind, friendly, efficient person who said, "Yes, absolutely we will help." And she wrote the most amazing email to their staff at Palma Sola and had the same incredible response that I had. And she offered to pick up gift cards, deliver meals, set up the website, she basically said she would do whatever needs to be done to make this work and get it started as soon as possible. How very lucky Mary Ann is to have a co-worker like Billie Jo. I will be emailing Billie Jo next to share her experience with this project because I know she has her own thoughts to share.
Mary Ann and Dan,
We cannot wave a magic wand and make Nathan's tumor come out his nose like my son wanted it to, but we are here for you, and we will feed you and your family on Nathan's treatment days for the next 18 months. As soon as you have his treatment schedule give Billie Jo the dates and she will set up the website. We have volunteered to sign up for a date to either bring you a meal or send a gift card for a nearby restaurant. We're fine tuning the project and I cannot promise there won't be glitches, but we are all committed to doing this for you and making it work. We love you, support you, and want you to have a physical reminder every week of how much people care about you, Nathan, Clare and Matthew.
Love and Pep,
Elizabeth
Mary Ann is one of my very oldest and dearest friends, a true BFF. She and her husband Dan have had more than their share of troubles these last few years and life has thrown them a real cannonball with the latest - their son Nathan has to have eighteen months of chemotherapy for a brain tumor. As a parent I do not want to imagine how painful this would be for me. Perhaps it is living in the south that has done this to me but when the chips are down for someone here we cook. Casseroles and hams, brownies, and soup, I have made it all and delivered them for births, deaths, kids in the hospital; I guess it makes me feel less helpless and more useful. Which is kind of ironic because I don't love to cook or anything but I know that I LOVED having a freezer full of food when I had my daughter Lexie. SO, as I am now in GA and she is in FL I have had this overwhelming feeling of helplessness...how do I support my friend during this incredibly difficult time? How do I show her how much I care and wish I could fix this?
Then it dawned on me that I could still send a meal via a restaurant gift card. And I wondered... would other people want to do this too? And then I thought about our friends who are still in Sarasota - they might be willing to bring a casserole, or ham, or pan of lasagna to Mary Ann, Dan and their family. So I went through our Facebook contacts and sent an email to twenty-odd people and said, "If you wanted to do this I'd like to try and organize it." And WOW.
First Tara Bates Ross and Jennifer Jannopoulo Halloran said, "Of course we'll help." Tara found this website all set up just to organize efforts like this. Taggert set up this blog for her and basically has said he will do as much as he can do for as long as it takes. Philip Reed and Sean McCue said, "We are local and will help in any way you want us to." The responses have brought tears to my eyes so many times, like when Mike said, "The Bucellettes will make Get Better cards for Nathan too." And then there was Kara, "I have already sent chocolate rats but you know I will send more as needed." Alyson, who realized some of this was tricky for me with a toddler and a six year old and offered to help coordinate from afar, and has been in contact with Mary Ann's church and is arranging for them to be included in this effort as well. So many more friends have agreed to participate, Katie and Hope, Cathy and Barb, and our ever amusing and always inappropriate college friend Mark Polner. I hope I haven't forgotten anyone but please know it is just because the response has been so overwhelming and not because you are any less important or wonderful.
At some point my classmates grew up into an AMAZING bunch of kind and caring people. So many of you thanked me for trying to organize this - it is I who thank YOU for making this a reality. And I know this is a LONG story but I have to include in its entirety, the response I got from Jack Byers, because it FLOORED me with his generosity. Then I remembered that in fifth grade Jon Jetton (who died from leukemia) was his best friend and realized that helping kids like Jon is now just part of who he is. I am so incredibly proud that this is how he has channeled that experience and I know Jon is too. The only terrible thing is that I didn't manage to arrange the singing telegram while he was in town because I know it would have been Mary Ann's very favorite Christmas gift. Jack - perhaps a video when you send your contribution...
Chickenshack Jack December 21, 2010 at 12:18pm Reply• Report
I’m a takeout pro, and would like to contribute where/ whenever the need is there.
I don’t know what kind of treatment options are available in SRQ (probably lots), but I’m just a few miles away from Children’s Hospital of Philadelphia (CHOP).
I volunteer there with an outfit called Musicians On Call, and have pretty extensive experience with their oncology ward… which I find to be an incredible place. Between the environment, the technology and the amazing dedication and kindness of the staff I can recommend it highly. A far cry from what Jon had to endure back when we were little, it's an entire hospital built just for pediatrics.
I live alone (ok, I have two cats and some fish) in a house with two guest rooms, and would be happy to open them up to MA, her stepson and her family if they have any interest in considering CHOP as a treatment option.
I'll be in SRQ later this week too, if there's anything I can do in person (ie-casserole delivery, singing telegram, etc) just let me know.
God bless you Jack Byers and promise me we'll make that singing telegram happen at some point. I think you'd approve of Nathan's musical tastes actually...
Part II
So I started thinking... Mary Ann is an elementary school teacher - probably some of her school friends would want to help... and I remembered the name Billie Jo as a teacher pal (and here I confess that I have since wanted to write an Ode to her... even though I am sure she has heard that twenty-two thousand times) from our conversations and from Facebook posts. So I emailed this perfect stranger who turned out to be this lovely, kind, friendly, efficient person who said, "Yes, absolutely we will help." And she wrote the most amazing email to their staff at Palma Sola and had the same incredible response that I had. And she offered to pick up gift cards, deliver meals, set up the website, she basically said she would do whatever needs to be done to make this work and get it started as soon as possible. How very lucky Mary Ann is to have a co-worker like Billie Jo. I will be emailing Billie Jo next to share her experience with this project because I know she has her own thoughts to share.
Mary Ann and Dan,
We cannot wave a magic wand and make Nathan's tumor come out his nose like my son wanted it to, but we are here for you, and we will feed you and your family on Nathan's treatment days for the next 18 months. As soon as you have his treatment schedule give Billie Jo the dates and she will set up the website. We have volunteered to sign up for a date to either bring you a meal or send a gift card for a nearby restaurant. We're fine tuning the project and I cannot promise there won't be glitches, but we are all committed to doing this for you and making it work. We love you, support you, and want you to have a physical reminder every week of how much people care about you, Nathan, Clare and Matthew.
Love and Pep,
Elizabeth
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