Two of my great writing friends (great as writers and great as friends), Matt and Brooklyn Evans, race every year to raise money for the Huntsman Cancer Institute. They asked this year if they could race for Jacob.
After I finished weeping, I said yes :)
Here's the information from Matt and Brooklyn on how to donate if you feel so inclined.
Hello all,
Well, it's that time of year again! Matt and I are participating in Hometown Heroes and training for the Salt Lake half-marathon on April 19th, 2008. This will be our first official race since we had our baby in October, so we're running with a jogging stroller these days! This year our training has a special urgency. We found out recently that Jacob Andersen (the 11-year-old son of our friends Laura and Chris) was diagnosed with a form of cancer called Childhood Rhabdomyosarcoma. We're dedicating our training to him as we raise funds for cancer research and education at Huntsman Cancer Institute. Jacob is a brave, happy kid who's determined to continue his normal life to the maximum degree possible despite undergoing chemotherapy. He's being treated at Huntsman Cancer Hospital. To see a picture of Jacob and read updates on his progress, you can visit the blog his mom created for him at http://www.jacobsjourney2008.blogspot.com/ Few of us can be oblivious to the specter of cancer. This is our third year participating in Hometown Heroes, and Matt and I have been deeply moved by the effect of this insidious disease on family members and friends. That's why we keep braving the winter weather to test our endurance and to enlist support along the way as we fight back.
Please consider making a donation to help people like Jacob, especially if you or someone you know has struggled with cancer. Simply go to http://www.active.com/donate/huntsman08 and click on the drop-down box under View Fundraising Pages. This will allow you to select our individual webpages by name. Incidentally, don't worry about donating to both of us if you'd like to help. The monies all go to the same place (Huntsman Cancer Institute). Please know too that if you can't give at this time, moral support is also appreciated.
Feel free to pass this message on to others who might be interested in contributing or who would like to join the Hometown Heroes team.
As always, thanks so much for supporting this wonderful cause! Yours, Brooklyn Evans and Matt ( a.k.a. "Glorious Calves") Evans
Wednesday, January 30, 2008
Catching Up
I hate being behind.
I have the feeling I'm going to learn to deal with that a lot this year.
Here's a random hodgepodge of facts, events, and interior decorating.
EVENTS
1. First stay in the hospital since the beginning. He had inpatient chemo on January 24. The 12 hours afterward were the hardest--he threw up twice--but he was up and around when he came home the next day and even went to his friend's house to play that next night.
2. First blood draw at home. This involved the home care nurse coming out and accessing his port. We covered the site with lidocaine cream beforehand and the numbing worked. Jake didn't even flinch.
3. A sea of bald heads in Primary. Two days after Jake went bald, the 11-year-old Scout activity involved the rest of his friends shaving their heads. As I told those boys in Primary Sunday: "Someday, you will be parents. When you are, I want you to remember what you did for Jacob this week. And then you'll know how I feel about it." (There are pictures, just not on my camera. As soon as I get them, I'll post.)
4. I'd expected to write by this time "First radiation treatment." But we were pushed back a couple of days because, the doctor said, of the complexity of the treatment planning. We're now scheduled to begin radiation tomorrow, January 31, at Huntsman. Jake didn't mind. He really doesn't want to wear that mask.
FACTS
1. During Jake's inpatient chemo treatments, he is administed all 3 drugs in the VAC protocol. It's the "C" that's particularly difficult: cytoxan not only brings on nausea, but it also has a damaging effect on the bladder. Hemorrhaging is a real concern. When Jake goes in for his outpatient chemo, he is first given several hours of IV fluids so they can measure how his body gets rid of them (there's no peeing and flushing in the hospital--everything is measured). Just before the VAC is given, a drug called Mensa is given to help protect the bladder. Then Vincristine is pushed (the 90-second drug that he has every week in outpatient chemo), followed by Dactinomycin (several minutes to push), and then cytoxan goes in over 45 minutes to an hour. When it's finished, Jacob is given more Mensa. Also, the anti-nausea drugs are given before the chemo is started. We skipped Ativan this time, because it didn't work so great, and started with Zofran. He threw up twice, but managed to sleep very well in between the every-two-hours of peeing. (That's a requirement after cytoxan--they want to make sure he isn't bleeding.)
2. Jacob has (had) (will have again) a lot of hair. As measured by the fact that it's still showing up in my dryer's lint release a week after we shaved him.
3. Jacob gained a kilo between our last outpatient and his inpatient visits. Before they sent him home, they gave him a steroid to boost his appetite. He's certainly been eating a lot this weekend.
4. Alveolar Rhabdomyosarcoma is caused by a tiny mistake in Jacob's DNA. We all have mistakes--no one has a perfect strand of DNA--and they don't always switch on or cause problems. But in Jacob's case, two chromosomes switched places and that led to his cells suddenly growing too fast and turning into a tumor.
5. What is Alveolar rhabdomyosarcoma? Let's start at the end. A sarcoma is a tumor of the soft or connective tissues. Rhabdo is specifically in connective tissue. There are two main types of rhabdo: embryonal and alveolar. Embryonal is the most common and found in younger children. Alveolar is less common overall, but more likely to be found in teenagers. Alveolar refers to the way the tumor looks beneath a microscope--with little bubbles like alveoli.
6. The most common location for embryonal rhabdomyosarcoma tumor is the face. That's also the location associated with the most favorable outcome, because you're likely to notice a tumor growing in the face sooner than a tumor growing elsewhere. The later you discover it, the more likely it will have metastasized. However, alveolar rhabdomyosarcoma is not as commonly found in the face. So Jacob's unusual.
INTERIOR DECORATING
Emma and Jacob have switched bedrooms so Jake can be near us for this year. Emma has adapted quite well to being in the basement and sleeping in Jake's loft bed. (We didn't switch beds because, well, Emma's room is the largest bedroom in the house and Jake's is the smallest. Emma had to pare down some of her stuff to fit into Jake's room.) While Jake was in the hospital overnight, I finished decorating his new room. (It just seemed cruel to condemn him to 10 months of pastel walls and a white girly bed.) Emma's bed now has denim slipcovers on the head and footboards. One wall is dark navy and the other walls are Ralph Lauren parchment (or light brown, if you insist.) Our ward humanitarian board made Jacob a quilt with vintage airplanes on one side and handprints of ward members on the other. Bookshelves and books and stuffed animals are all in their new places upstairs and I think we'll do quite nicely.
I have the feeling I'm going to learn to deal with that a lot this year.
Here's a random hodgepodge of facts, events, and interior decorating.
EVENTS
1. First stay in the hospital since the beginning. He had inpatient chemo on January 24. The 12 hours afterward were the hardest--he threw up twice--but he was up and around when he came home the next day and even went to his friend's house to play that next night.
2. First blood draw at home. This involved the home care nurse coming out and accessing his port. We covered the site with lidocaine cream beforehand and the numbing worked. Jake didn't even flinch.
3. A sea of bald heads in Primary. Two days after Jake went bald, the 11-year-old Scout activity involved the rest of his friends shaving their heads. As I told those boys in Primary Sunday: "Someday, you will be parents. When you are, I want you to remember what you did for Jacob this week. And then you'll know how I feel about it." (There are pictures, just not on my camera. As soon as I get them, I'll post.)
4. I'd expected to write by this time "First radiation treatment." But we were pushed back a couple of days because, the doctor said, of the complexity of the treatment planning. We're now scheduled to begin radiation tomorrow, January 31, at Huntsman. Jake didn't mind. He really doesn't want to wear that mask.
FACTS
1. During Jake's inpatient chemo treatments, he is administed all 3 drugs in the VAC protocol. It's the "C" that's particularly difficult: cytoxan not only brings on nausea, but it also has a damaging effect on the bladder. Hemorrhaging is a real concern. When Jake goes in for his outpatient chemo, he is first given several hours of IV fluids so they can measure how his body gets rid of them (there's no peeing and flushing in the hospital--everything is measured). Just before the VAC is given, a drug called Mensa is given to help protect the bladder. Then Vincristine is pushed (the 90-second drug that he has every week in outpatient chemo), followed by Dactinomycin (several minutes to push), and then cytoxan goes in over 45 minutes to an hour. When it's finished, Jacob is given more Mensa. Also, the anti-nausea drugs are given before the chemo is started. We skipped Ativan this time, because it didn't work so great, and started with Zofran. He threw up twice, but managed to sleep very well in between the every-two-hours of peeing. (That's a requirement after cytoxan--they want to make sure he isn't bleeding.)
2. Jacob has (had) (will have again) a lot of hair. As measured by the fact that it's still showing up in my dryer's lint release a week after we shaved him.
3. Jacob gained a kilo between our last outpatient and his inpatient visits. Before they sent him home, they gave him a steroid to boost his appetite. He's certainly been eating a lot this weekend.
4. Alveolar Rhabdomyosarcoma is caused by a tiny mistake in Jacob's DNA. We all have mistakes--no one has a perfect strand of DNA--and they don't always switch on or cause problems. But in Jacob's case, two chromosomes switched places and that led to his cells suddenly growing too fast and turning into a tumor.
5. What is Alveolar rhabdomyosarcoma? Let's start at the end. A sarcoma is a tumor of the soft or connective tissues. Rhabdo is specifically in connective tissue. There are two main types of rhabdo: embryonal and alveolar. Embryonal is the most common and found in younger children. Alveolar is less common overall, but more likely to be found in teenagers. Alveolar refers to the way the tumor looks beneath a microscope--with little bubbles like alveoli.
6. The most common location for embryonal rhabdomyosarcoma tumor is the face. That's also the location associated with the most favorable outcome, because you're likely to notice a tumor growing in the face sooner than a tumor growing elsewhere. The later you discover it, the more likely it will have metastasized. However, alveolar rhabdomyosarcoma is not as commonly found in the face. So Jacob's unusual.
INTERIOR DECORATING
Emma and Jacob have switched bedrooms so Jake can be near us for this year. Emma has adapted quite well to being in the basement and sleeping in Jake's loft bed. (We didn't switch beds because, well, Emma's room is the largest bedroom in the house and Jake's is the smallest. Emma had to pare down some of her stuff to fit into Jake's room.) While Jake was in the hospital overnight, I finished decorating his new room. (It just seemed cruel to condemn him to 10 months of pastel walls and a white girly bed.) Emma's bed now has denim slipcovers on the head and footboards. One wall is dark navy and the other walls are Ralph Lauren parchment (or light brown, if you insist.) Our ward humanitarian board made Jacob a quilt with vintage airplanes on one side and handprints of ward members on the other. Bookshelves and books and stuffed animals are all in their new places upstairs and I think we'll do quite nicely.
Tuesday, January 22, 2008
Hair Yesterday, Gone Today
(Just a note--if you want a quick read on my state of mind, just scan the title. They get progressively sillier the more tired I am)
The day came.
Jake's head has been shaved.
It started Sunday in Primary. One minute I was leading the music, the next I was in the back of the room watching Jake pull out a clump of his hair.
We'd come up with ideas for making the headshaving a party--all of his friends, shaving patterns and/or a mohawk on him--but Jacob wanted it done quick and quiet. And he wanted Mom to do it.
So while Dad snapped away with the camera, I shaved my first head.
I didn't do too badly, if I do say so myself. Of course, the stubble is going to fall out over the next few days. And the eyebrows and eyelashes are also going to vanish.
But as we keep reminding Jake, "It grows back! You're not going to look like a white supremacist forever!"
Actually, wearing a black shirt and with his Xbox Rock Band microphone in hand, he looks a lot like a junior rock star.
But I'm still making him go to school.
The day came.
Jake's head has been shaved.
It started Sunday in Primary. One minute I was leading the music, the next I was in the back of the room watching Jake pull out a clump of his hair.
We'd come up with ideas for making the headshaving a party--all of his friends, shaving patterns and/or a mohawk on him--but Jacob wanted it done quick and quiet. And he wanted Mom to do it.
So while Dad snapped away with the camera, I shaved my first head.
I didn't do too badly, if I do say so myself. Of course, the stubble is going to fall out over the next few days. And the eyebrows and eyelashes are also going to vanish.
But as we keep reminding Jake, "It grows back! You're not going to look like a white supremacist forever!"
Actually, wearing a black shirt and with his Xbox Rock Band microphone in hand, he looks a lot like a junior rock star.
But I'm still making him go to school.
Thursday, January 17, 2008
You Know You've Got a Great Kid When . . .
Jacob (last night): "Mom, I may have cancer and that might suck, but I wouldn't trade being myself with anyone else."
Me: "Why is that?"
Jacob: "Because I'm just so happy."
Today's good news: At our weekly outpatient chemo session, the doctor checked the site of Jacob's teeth extraction and had me come look. The tumor has noticeably receded in just two weeks, leaving his gums looking like there were actually once teeth in there. I never thought I'd be so happy to look at empty tooth sockets, but when compared to the grayish-whitish swelling that's been there . . . Hooray!
Today's less good news: Jacob lost a kilo in the last week. (I know, I know, I'm not really a kilo person myself, though I'm considering becoming one since, after all, it would sound like I weigh a lot loss in kilos than pounds.) In any case, he's lost weight. Not good, especially when he's not suffering any significant side effects that inhibit eating. I guess the body just burns up a lot of energy fighting the cancer and we've got to pour in more calories than we'd think to keep him fueled. Jake took it well enough, decreeing that we should stop for a high-fat/high-calorie lunch on the way home. "Sure," I said. "That's all well and good for you. But no one's telling Mom that she needs to gain weight!" Still, as a good and kind mother, we ate at TGI Friday's.
Also not so great news: His blood counts have finally fallen. They tend to bottom out between 10-14 days after the inpatient chemo, yesterday was day 14. His platelets and hematocrit are still in the normal range, but white blood cells and the ANC (absolute neutrophil count) are both very low. So careful hygiene at our house this next week, and careful monitoring of Jacob.
Today's random fact: Vincristine is the fastest chemo drug to administer. It took us far longer just to get registered today and have his labs done. Once his port was accessed, the administration of the drug took less than 90 seconds.
Me: "Why is that?"
Jacob: "Because I'm just so happy."
Today's good news: At our weekly outpatient chemo session, the doctor checked the site of Jacob's teeth extraction and had me come look. The tumor has noticeably receded in just two weeks, leaving his gums looking like there were actually once teeth in there. I never thought I'd be so happy to look at empty tooth sockets, but when compared to the grayish-whitish swelling that's been there . . . Hooray!
Today's less good news: Jacob lost a kilo in the last week. (I know, I know, I'm not really a kilo person myself, though I'm considering becoming one since, after all, it would sound like I weigh a lot loss in kilos than pounds.) In any case, he's lost weight. Not good, especially when he's not suffering any significant side effects that inhibit eating. I guess the body just burns up a lot of energy fighting the cancer and we've got to pour in more calories than we'd think to keep him fueled. Jake took it well enough, decreeing that we should stop for a high-fat/high-calorie lunch on the way home. "Sure," I said. "That's all well and good for you. But no one's telling Mom that she needs to gain weight!" Still, as a good and kind mother, we ate at TGI Friday's.
Also not so great news: His blood counts have finally fallen. They tend to bottom out between 10-14 days after the inpatient chemo, yesterday was day 14. His platelets and hematocrit are still in the normal range, but white blood cells and the ANC (absolute neutrophil count) are both very low. So careful hygiene at our house this next week, and careful monitoring of Jacob.
Today's random fact: Vincristine is the fastest chemo drug to administer. It took us far longer just to get registered today and have his labs done. Once his port was accessed, the administration of the drug took less than 90 seconds.
Wednesday, January 16, 2008
The Physics of Time
I know I promised days ago to deliver a post on What Comes Next. Here's where the strange physics of time come into play--time is disappearing at a much faster rate than normal. You'd think I'd have some explanation for it, having read E=MC 2 for couples' book club last year, but my mind is not capable of thinking beyond the basics like "What day is it today?" and "Did I remember to shower?"
I've decided having a seriously ill child is remarkably like bringing home your first baby. No sleep, high stress, and very little confidence in yourself as a parent.
Not that Jacob appears seriously ill at all. He's been to school, on average, every other day. He's playing with his friends, doing homework (with the usual amount of protesting), and sleeping well. He hasn't has to take any medication for pain or nausea since the first weekend we brought him home. His hair is still present. All in all, it's way too easy to be lulled into thinking all will be well with very little effort involved.
And then comes a day like yesterday where I'm reminded of what's going on.
Yesterday was our first visit to the Huntsman Cancer Hospital. It's beautiful, it's welcoming, and we're in very good hands for the radiation. We did the radiation treatment planning yesterday, which involved a lot of lying still on uncomfortable boards for Jacob while they did CT scans and PET scans and made his treatment mask. (The mask allows them to make sure his head in the right position every time and to not have to tatoo the necessary marks on his face.) We're scheduled to begin radiation treatment on January 29, as long as his blood counts are high enough. Pray that they will be, because radiation is something I just want to get started so we can finish it sooner.
That's the big news of the week. Tomorrow is his second outpatient chemo, we're not anticipating any problems. He'll be admitted to Primary's on January 24 for his next big round of chemo, for which they'll keep him overnight.
I've decided not to make any more promises about posting WHAT COMES NEXT because the "comes next" stuff just keeps coming without giving me a week or two to catch up with it on this blog. So I'll try and fill in randomly as we go along.
Here's the random facts for today: The chemo protocol Jake is doing is known as VAC. It stands for Vincristine/dActinomycine/Cyclophosphamide (or Cytoxan).
He receives Vincristine every week in the outpatient clinic. He receives the other two in combination with Vincristine during his once-every-three-weeks overnight stay.
And my happiest moment of the week? When the radiation oncologist, Dr. Lynn Smith, said yesterday, "His cheek has really gone down. I can tell the chemo's working just by looking at him."
Hooray!
And one other random thought I had yesterday--PET stands for Positron Emission Test. All I could think when I read that was, "Doesn't Data have a positronic brain? Will this scan turn him into an android capable of working on the Starship Enterprise?"
I've decided having a seriously ill child is remarkably like bringing home your first baby. No sleep, high stress, and very little confidence in yourself as a parent.
Not that Jacob appears seriously ill at all. He's been to school, on average, every other day. He's playing with his friends, doing homework (with the usual amount of protesting), and sleeping well. He hasn't has to take any medication for pain or nausea since the first weekend we brought him home. His hair is still present. All in all, it's way too easy to be lulled into thinking all will be well with very little effort involved.
And then comes a day like yesterday where I'm reminded of what's going on.
Yesterday was our first visit to the Huntsman Cancer Hospital. It's beautiful, it's welcoming, and we're in very good hands for the radiation. We did the radiation treatment planning yesterday, which involved a lot of lying still on uncomfortable boards for Jacob while they did CT scans and PET scans and made his treatment mask. (The mask allows them to make sure his head in the right position every time and to not have to tatoo the necessary marks on his face.) We're scheduled to begin radiation treatment on January 29, as long as his blood counts are high enough. Pray that they will be, because radiation is something I just want to get started so we can finish it sooner.
That's the big news of the week. Tomorrow is his second outpatient chemo, we're not anticipating any problems. He'll be admitted to Primary's on January 24 for his next big round of chemo, for which they'll keep him overnight.
I've decided not to make any more promises about posting WHAT COMES NEXT because the "comes next" stuff just keeps coming without giving me a week or two to catch up with it on this blog. So I'll try and fill in randomly as we go along.
Here's the random facts for today: The chemo protocol Jake is doing is known as VAC. It stands for Vincristine/dActinomycine/Cyclophosphamide (or Cytoxan).
He receives Vincristine every week in the outpatient clinic. He receives the other two in combination with Vincristine during his once-every-three-weeks overnight stay.
And my happiest moment of the week? When the radiation oncologist, Dr. Lynn Smith, said yesterday, "His cheek has really gone down. I can tell the chemo's working just by looking at him."
Hooray!
And one other random thought I had yesterday--PET stands for Positron Emission Test. All I could think when I read that was, "Doesn't Data have a positronic brain? Will this scan turn him into an android capable of working on the Starship Enterprise?"
Friday, January 11, 2008
39
So yesterday was my birthday.
I'm just glad I wasn't turning 40--that might have been one stress too many!
The day included:
1-outpatient chemo treatment
1-long visit with the radiation oncologist
1-trip to the DMV to renew my driver's license
I think the DMV was the worst :)
Seriously, it was a tough day. The chemo went great--quick, relatively painless, and his porta-cath was de-accessed for the first time since it was put in. So we came home without tubes sticking out his chest, a remarkably good feeling.
But the radiation oncologist was a different matter. She was out of town when we were in the hospital last week, so we'd only met her resident. (Who, by the way, looks like he's 12. Seriously. We met some young doctors last week, but this guy looks younger than my teenager.) So yesterday was our day to meet Dr. Lynn Smith. We knew Jacob would be having radiation in conjunction with chemo, but we hadn't realized how involved the process would be, nor how difficult the side effects.
Next Tuesday, we'll go to the Huntsman Cancer Institute for treatment planning, which will involve a PET scan and a CT scan to precisely map his tumor. They want it down to millimeters so they don't target anything they don't have to with radiation. He gets a cool plastic mesh mask on which they'll draw the markings so his face doesn't have to be tattooed. Apparently there's a tech who will decorate the mask however he wants. He's leaning toward a Boston Red Sox theme. When the scans are finished, it will take them nearly two weeks to precisely plan their treatment. Then we begin.
At the moment, Jake's scheduled for his first radiation treatment on Monday, January 28. They aren't terribly long--about an hour of total time from arriving to leaving--but they are every single weekday for 28 treatments, which is 5 1/2 weeks. (At this point, I was thinking, "Man, I'm glad I don't live in Wyoming or Idaho or southern Utah!")
And the side effects are cumulative--they will get worse as we go along. Sensitive skin at the radiation site I can handle. Fatigue, no problem. Even mouth sores--well, we've had a little touch of that already with chemo.
I was not prepared to have her say that virtually every patient treated in the head/neck area end up having IV nutrition for a time because their mouths and throats become so sore that they won't eat. That was discouraging to hear. She did say that with pediatric patients they try to avoid the nasal-gastric tube and instead to have parents supplement through the porta-cath. I guess if I can give shots I can push stuff into a tube. (Yes, I'm giving shots--I promise to get back to that soon.)
All in all, a reminded that he is ill. In spite of how good this week has been, how normally he's behaved, the truth is that we need to treasure our good days because there will be plenty of bad ones coming.
So I did the most motherly thing of all this morning--I made him go to school. Not for the whole day, but I told him that if February is going to be spent miserable from radiation, that he'd better go to school while he can.
I can't decide if that makes me a good, sensible, balanced mom or a cruel and sadistic mom. But all I can do at this point is make one decision at a time. That was today's decision. Now to start thinking about tomorrow's.
I'm just glad I wasn't turning 40--that might have been one stress too many!
The day included:
1-outpatient chemo treatment
1-long visit with the radiation oncologist
1-trip to the DMV to renew my driver's license
I think the DMV was the worst :)
Seriously, it was a tough day. The chemo went great--quick, relatively painless, and his porta-cath was de-accessed for the first time since it was put in. So we came home without tubes sticking out his chest, a remarkably good feeling.
But the radiation oncologist was a different matter. She was out of town when we were in the hospital last week, so we'd only met her resident. (Who, by the way, looks like he's 12. Seriously. We met some young doctors last week, but this guy looks younger than my teenager.) So yesterday was our day to meet Dr. Lynn Smith. We knew Jacob would be having radiation in conjunction with chemo, but we hadn't realized how involved the process would be, nor how difficult the side effects.
Next Tuesday, we'll go to the Huntsman Cancer Institute for treatment planning, which will involve a PET scan and a CT scan to precisely map his tumor. They want it down to millimeters so they don't target anything they don't have to with radiation. He gets a cool plastic mesh mask on which they'll draw the markings so his face doesn't have to be tattooed. Apparently there's a tech who will decorate the mask however he wants. He's leaning toward a Boston Red Sox theme. When the scans are finished, it will take them nearly two weeks to precisely plan their treatment. Then we begin.
At the moment, Jake's scheduled for his first radiation treatment on Monday, January 28. They aren't terribly long--about an hour of total time from arriving to leaving--but they are every single weekday for 28 treatments, which is 5 1/2 weeks. (At this point, I was thinking, "Man, I'm glad I don't live in Wyoming or Idaho or southern Utah!")
And the side effects are cumulative--they will get worse as we go along. Sensitive skin at the radiation site I can handle. Fatigue, no problem. Even mouth sores--well, we've had a little touch of that already with chemo.
I was not prepared to have her say that virtually every patient treated in the head/neck area end up having IV nutrition for a time because their mouths and throats become so sore that they won't eat. That was discouraging to hear. She did say that with pediatric patients they try to avoid the nasal-gastric tube and instead to have parents supplement through the porta-cath. I guess if I can give shots I can push stuff into a tube. (Yes, I'm giving shots--I promise to get back to that soon.)
All in all, a reminded that he is ill. In spite of how good this week has been, how normally he's behaved, the truth is that we need to treasure our good days because there will be plenty of bad ones coming.
So I did the most motherly thing of all this morning--I made him go to school. Not for the whole day, but I told him that if February is going to be spent miserable from radiation, that he'd better go to school while he can.
I can't decide if that makes me a good, sensible, balanced mom or a cruel and sadistic mom. But all I can do at this point is make one decision at a time. That was today's decision. Now to start thinking about tomorrow's.
Tuesday, January 8, 2008
Tests, More Tests, and Waiting
If you're still with me, here's where the precise chronology begins to break down. At this point in the story, I am tired, I am scared, and my sense of time is completely skewed. I mean, I actually called my friend's house, got her husband, and only realized later that she was at book club. Come on! I've only missed two book clubs in seven years--suddenly I can't remember what night it's on? (The truth is, I knew what night book club was on, I just didn't know what night I was on.
Things that happened on Wednesday afternoon/Thursday/Friday, in no particular order except how my mind is happening to remember them right now:
-We meet Dr. Zeinab Afify, Jacob's oncologist. She's wonderful. We feel very confident in her hands. We also meet Dr. Lucy, her resident. One (of many) nice things about a children's hospital--you sometimes get to call the doctors by their first names.
-Jacob has a second cat scan, an MRI, and a cardiac echo. The echo takes a baseline reading of his heart to see if there's any effect on it during the course of treatment. It involves lying on his side and watching TV. Not too taxing. The cat scan is annoying mostly because they wanted to check his liver/stomach area, so he had to drink an enormous amount of contrast dye. It's nasty. He managed it. I was very proud. The MRI involved more holding still while watching TV. At this point, I'm thinking how lucky we are to have an 11-year-old and not a 4-year-old in this position. Can you imagine the logistics of trying to keep a toddler or preschooler still? Not to mention the difficulty of them not really understanding what's happening and why certain things need to be done.
-Chris spends Wednesday night at the hospital with Jake and sends me home to get more than 45 minutes of sleep. (And to shower and change my clothes--no one is happy about the way I look.) The worst part of being the one to go home isn't leaving Jake--it's being the one who has to tell our 3 other children what's wrong. Emma (9) bursts into tears the moment I say "cancer". Spencer (6) has a lot of questions like "What is a vein?" But it's Matt I'm really worried about. At 14 and naturally reserved like his father, he says nothing while I'm talking, just stares at the floor. After we're finished, I get the younger ones into showers and go downstairs to find Matt. Alone, he manages to let his emotions out. It's good for him, but excruciating for me. I told them that the hardest part of the coming months would be watching Jake and not being able to take it for him. We can love him and support him and help him--but he's the one who has to do it. And as a mother, the second hardest thing is that I can't make my other children not go through this as well. They're going to hurt. They're going to worry. I wish they could stay sheltered. But they can't. So all we can do is stick together.
-I feel much better after 7 hours of sleep and a shower. I get the kids off to school (first day back after Christmas), talk briefly to Jacob's teacher and principal, then head up to the hospital. Jacob has--wait a minute, I think I was ahead of myself earlier--Jacob has the MRI this morning. We know that he'll go into surgery sometime today to have his porta-cath implanted in his chest (providing easy IV access for the months of infusions to follow). We don't expect that until late afternoon since he's not on anyone's schedule. But surprise! They take him within a half hour after his MRI. He's most nervous about being put to sleep--what will it be like, will he remember anything, will it hurt. But he holds up well and we send him off with a smile hiding our own nervous hearts.
-There's a slight mix-up in what needs to be done when, but it all works out. By the time Jacob is brought back up to his room, he has a porta-cath and he's also had a spinal tap and a bone marrow biopsy while he was under. He's a little sore when he wakes up, and very groggy. But his brother and best friends come up to visit and that perks him up.
-By Friday at noon, we've had the results of all the tests except the bone marrow biopsy. Every single one is clear, meaning there's been no spread of the cancer. It's the very best thing we could hear. It's also not near his brain and, although it's pressing on the optic nerve which is causing the swelling of his eye, it hasn't invaded the nerve and his eye should be fine. (We spent two hours Friday morning in the opthamology clinic and at the Moran Eye Center having tests that will be a baseline for his eyesight as the treatment progresses.)
-Chemotherapy begins late Friday afternoon. They are very agressive about treating nausea in children, so they give him anti-nausea drugs before they even begin the treatment. Chris stays this night (I stayed Thursday) and it's a bit of rough night. There will be a learning curve for how his body reacts and an adjustment of medications as we learn. He has to get up every two hours to use the bathroom (one of the drugs is very hard on the bladder), so he's tired and he does get nauseous. He throws up once at 4:00 a.m. When I get back to the hospital the next morning, he's sleeping from a combination of Benadryl and Phenargan. We're released in the early afternoon and take him home. He has dry heaves once on the way home, but I think that was mostly car sickness taking advantage of his delicate state.
-Jake's friends have decorated the house for him, and also his sister's room. (We've put Emma in the bunk beds with Spencer and moved Jacob upstairs from the basement for now--I don't want him that far from me.) He mostly sleeps the rest of that day and that night. He takes one dose of Zofran for the nausea, but doesn't touch if after that. By Sunday night, he's beginning to be himself again.
-Monday and today (Tuesday) have been good days--up and about, watching TV, on the computer. I took him to school today for just 20 minutes to see his classmates (who cheered when he walked in unexpectedly) and to talk a little about what he's going through and what to expect.
And that's my next post: What Happens Now
Things that happened on Wednesday afternoon/Thursday/Friday, in no particular order except how my mind is happening to remember them right now:
-We meet Dr. Zeinab Afify, Jacob's oncologist. She's wonderful. We feel very confident in her hands. We also meet Dr. Lucy, her resident. One (of many) nice things about a children's hospital--you sometimes get to call the doctors by their first names.
-Jacob has a second cat scan, an MRI, and a cardiac echo. The echo takes a baseline reading of his heart to see if there's any effect on it during the course of treatment. It involves lying on his side and watching TV. Not too taxing. The cat scan is annoying mostly because they wanted to check his liver/stomach area, so he had to drink an enormous amount of contrast dye. It's nasty. He managed it. I was very proud. The MRI involved more holding still while watching TV. At this point, I'm thinking how lucky we are to have an 11-year-old and not a 4-year-old in this position. Can you imagine the logistics of trying to keep a toddler or preschooler still? Not to mention the difficulty of them not really understanding what's happening and why certain things need to be done.
-Chris spends Wednesday night at the hospital with Jake and sends me home to get more than 45 minutes of sleep. (And to shower and change my clothes--no one is happy about the way I look.) The worst part of being the one to go home isn't leaving Jake--it's being the one who has to tell our 3 other children what's wrong. Emma (9) bursts into tears the moment I say "cancer". Spencer (6) has a lot of questions like "What is a vein?" But it's Matt I'm really worried about. At 14 and naturally reserved like his father, he says nothing while I'm talking, just stares at the floor. After we're finished, I get the younger ones into showers and go downstairs to find Matt. Alone, he manages to let his emotions out. It's good for him, but excruciating for me. I told them that the hardest part of the coming months would be watching Jake and not being able to take it for him. We can love him and support him and help him--but he's the one who has to do it. And as a mother, the second hardest thing is that I can't make my other children not go through this as well. They're going to hurt. They're going to worry. I wish they could stay sheltered. But they can't. So all we can do is stick together.
-I feel much better after 7 hours of sleep and a shower. I get the kids off to school (first day back after Christmas), talk briefly to Jacob's teacher and principal, then head up to the hospital. Jacob has--wait a minute, I think I was ahead of myself earlier--Jacob has the MRI this morning. We know that he'll go into surgery sometime today to have his porta-cath implanted in his chest (providing easy IV access for the months of infusions to follow). We don't expect that until late afternoon since he's not on anyone's schedule. But surprise! They take him within a half hour after his MRI. He's most nervous about being put to sleep--what will it be like, will he remember anything, will it hurt. But he holds up well and we send him off with a smile hiding our own nervous hearts.
-There's a slight mix-up in what needs to be done when, but it all works out. By the time Jacob is brought back up to his room, he has a porta-cath and he's also had a spinal tap and a bone marrow biopsy while he was under. He's a little sore when he wakes up, and very groggy. But his brother and best friends come up to visit and that perks him up.
-By Friday at noon, we've had the results of all the tests except the bone marrow biopsy. Every single one is clear, meaning there's been no spread of the cancer. It's the very best thing we could hear. It's also not near his brain and, although it's pressing on the optic nerve which is causing the swelling of his eye, it hasn't invaded the nerve and his eye should be fine. (We spent two hours Friday morning in the opthamology clinic and at the Moran Eye Center having tests that will be a baseline for his eyesight as the treatment progresses.)
-Chemotherapy begins late Friday afternoon. They are very agressive about treating nausea in children, so they give him anti-nausea drugs before they even begin the treatment. Chris stays this night (I stayed Thursday) and it's a bit of rough night. There will be a learning curve for how his body reacts and an adjustment of medications as we learn. He has to get up every two hours to use the bathroom (one of the drugs is very hard on the bladder), so he's tired and he does get nauseous. He throws up once at 4:00 a.m. When I get back to the hospital the next morning, he's sleeping from a combination of Benadryl and Phenargan. We're released in the early afternoon and take him home. He has dry heaves once on the way home, but I think that was mostly car sickness taking advantage of his delicate state.
-Jake's friends have decorated the house for him, and also his sister's room. (We've put Emma in the bunk beds with Spencer and moved Jacob upstairs from the basement for now--I don't want him that far from me.) He mostly sleeps the rest of that day and that night. He takes one dose of Zofran for the nausea, but doesn't touch if after that. By Sunday night, he's beginning to be himself again.
-Monday and today (Tuesday) have been good days--up and about, watching TV, on the computer. I took him to school today for just 20 minutes to see his classmates (who cheered when he walked in unexpectedly) and to talk a little about what he's going through and what to expect.
And that's my next post: What Happens Now
Monday, January 7, 2008
The Worst 10 Hours of My Life
1:30 a.m.: We arrive at Primary Children's Medical Center. Since we're expected, we're spared the normal questions such as, "What seems to be the problem?" Fortunately, the rooms in this ER are private, so we don't have to listen to any wailing (at Timpanogos, the woman behind the next curtain was quite the whiner). Jacob's biggest problem at this point is sheer exhaustion. He manages to snatch some sleep as various doctors and nurses come in and out. I've brought the cat scan they did at Timp on a CD, which I hand over. About 4:00 in the morning I first hear the word "mass". As in, "I'm quite sure this isn't an infection, but some sort of mass that needs a biopsy." Feel free to imagine my thoughts. Describing them is beyond my ability.
5:00 a.m.: We're admitted to the surgical unit on the 3rd floor. We don't know what time the biopsy will be, probably late in the afternoon since we're not on anyone's schedule. Jacob falls asleep and I call Chris. I would say that was a difficult call, if it weren't for the much more difficult one to follow. I finally fall asleep about 6:15.
7:00-10:30: The day begins early, with more doctors and a brief meeting with the surgeon who will do the biopsy. He shows us the mass on the cat scan. No wonder Jake's having a hard time breathing out his left nostril--he can't. The mass is completely blocking his left sinus. Jacob manages to sleep through a lot of this, while I pace the corridors and call a couple friends. During this time, the doctors are trying to find the tissue sample that was sent up by UVRMC from the dentist. If it's big enough, they may not have to do a biopsy.
10:30: I'm on the phone with a friend when I see the surgical resident walk past. He recognizes me and waits. So I hurriedly get off the phone. I know it can't be wonderful when he takes me to a more private spot in the halls. Then he breaks the news: they found the tissue sample from the dentist, the pathologist has just finished his work, and it is cancer. He gives me a long name, the only part of which I remember is sarcoma at the end. He obviously feels terrible giving me this news. I'm trying not to dissolve in front of him. When he's finished, I call Chris. It's hard to talk, for both of us. After the call, I cry in the bathroom for a few minutes before pulling myself together. I have to tell Jake, even before Chris arrives, because the doctors will be in and they're going to move us to a different ward and I don't want him worrying about the unknown.
11:30: We're admitted to the ICS--Immuno-compromised Service. It's a closed ward on the 4th floor that houses oncology and transplant patients. We're going to get to know this place very well, but for now, I'm just a shellshocked mother who is wearing the same clothes as the day before, has had 45 minutes of sleep in two days, and has only her purse and a book with her.
All I can do is pray that it won't get worse.
5:00 a.m.: We're admitted to the surgical unit on the 3rd floor. We don't know what time the biopsy will be, probably late in the afternoon since we're not on anyone's schedule. Jacob falls asleep and I call Chris. I would say that was a difficult call, if it weren't for the much more difficult one to follow. I finally fall asleep about 6:15.
7:00-10:30: The day begins early, with more doctors and a brief meeting with the surgeon who will do the biopsy. He shows us the mass on the cat scan. No wonder Jake's having a hard time breathing out his left nostril--he can't. The mass is completely blocking his left sinus. Jacob manages to sleep through a lot of this, while I pace the corridors and call a couple friends. During this time, the doctors are trying to find the tissue sample that was sent up by UVRMC from the dentist. If it's big enough, they may not have to do a biopsy.
10:30: I'm on the phone with a friend when I see the surgical resident walk past. He recognizes me and waits. So I hurriedly get off the phone. I know it can't be wonderful when he takes me to a more private spot in the halls. Then he breaks the news: they found the tissue sample from the dentist, the pathologist has just finished his work, and it is cancer. He gives me a long name, the only part of which I remember is sarcoma at the end. He obviously feels terrible giving me this news. I'm trying not to dissolve in front of him. When he's finished, I call Chris. It's hard to talk, for both of us. After the call, I cry in the bathroom for a few minutes before pulling myself together. I have to tell Jake, even before Chris arrives, because the doctors will be in and they're going to move us to a different ward and I don't want him worrying about the unknown.
11:30: We're admitted to the ICS--Immuno-compromised Service. It's a closed ward on the 4th floor that houses oncology and transplant patients. We're going to get to know this place very well, but for now, I'm just a shellshocked mother who is wearing the same clothes as the day before, has had 45 minutes of sleep in two days, and has only her purse and a book with her.
All I can do is pray that it won't get worse.
How We Got Here
Or: The Long Boring Backstory that I'd Never Dare Open With in Fiction
December 3: Jacob stays home from school with a headache. I don't think much of it. He always gets headaches when he doesn't feel well or hasn't slept well. It's his automatic physical response.
Week of December 10: Jacob begins complaining about intermittent tooth pain. I don't think much of this, either. I know he has a cavity that we haven't had filled yet. The pain isn't intense and it comes and goes, so I ask him if he can wait until after Christmas. He says yes.
December 15: I notice that his left cheek is getting swollen. I begin to think more about it.
December 17: Jacob stays home from school. I call the dentist first thing. They can squeeze him in the next day in the afternoon. Or I can call them back if he can't stand it and they'll bring in the dentist who's off that day. Jacob makes it through the day fine.
December 18: Jacob goes to school, then to a 4:30 dentist appointment. My mother-in-law, Frances, takes him. I am at my parents' new house, supervising the moving in of all their belongings from storage. They'll be home in less than a month from spending 3 years in Kenya. I am shocked when the dentist calls my cell phone and says Jacob has a huge infection and he'll need to pull 2 teeth. I hate that I'm not with him.
December 18-31: Jacob actually has 3 teeth pulled (including the wisdom tooth that was up above the two infected teeth). The dentist was concerned about the infection, since it's so unusual in a child that age. He has sent a tissue sample to the lab at Utah Valley Regional Medical Center. Jacob is taking amoxicillin for a week. Then we have the dentist extend it for three more days so I feel comfortable sending Jake to Las Vegas with his dad and Matt. They go for the 27 and 28 to see the Blue Man Group perform. On Saturday night, the 29th, he takes his last antibiotic. He has moments of being totally himself, but he's still tired, headachy, and the swelling has not gone down. On Monday, the 31st, I get a call that the UVRMC lab isn't comfortable diagnosing the tissue sample and the think it might be more than a simple infection. They send it to Primary Children's Medical Center.
January 1: Decision. I am growing increasingly concerned about the swelling in his cheek. Although he doesn't have a fever, I'm worried that he still has an infection. Chris and I debate the options. The prudent thing, against which I have no logical objections, is to wait until morning and take him to the pediatrician. But I don't feel good about it. So off Jake and I go to the emergency room at Timpanogos Regional Hospital. We arrive at 9:30 p.m.
We see the doctor just after 10:00 p.m. He is instantly concerned about the possibility of a major infection, a fact that I find curiously reassuring. I think because it means he's taking it seriously and we won't have to sit around waiting for something to be done. He also notices that Jake's left eye is slightly protuberant, which could mean the infection is behind the eye. Jacob is started on a broad-spectrum IV antibiotic and given a cat scan. We spend the time pleasantly enough, Jake with his iPod, me with a book. At one point, I overhear the nurse on the phone talking about a patient transfer. Somehow, I have a feeling it's for Jake. At this point, I'm assuming it's a major infection that will need to be treated with IV antibiotics for several days at least. Although I'm worried, I feel confident that all will be well.
At 11:30, the doctor returns. He tells us the the cat scan is very worrying, he believes it shows a massive infection in his left cheek and going up behind his eye socket. He's arranged a transfer to Primary Children's. I'm allowed to drive Jacob there myself, but we're to go straight to the emergency room where they'll be expecting us. I call Chris to let him know where we're headed and get Jacob's coat and shoes on. We're about to be in the hands of one of the best children's hospitals in the U.S.
But we don't have the slightest idea of how our world is about to unravel.
December 3: Jacob stays home from school with a headache. I don't think much of it. He always gets headaches when he doesn't feel well or hasn't slept well. It's his automatic physical response.
Week of December 10: Jacob begins complaining about intermittent tooth pain. I don't think much of this, either. I know he has a cavity that we haven't had filled yet. The pain isn't intense and it comes and goes, so I ask him if he can wait until after Christmas. He says yes.
December 15: I notice that his left cheek is getting swollen. I begin to think more about it.
December 17: Jacob stays home from school. I call the dentist first thing. They can squeeze him in the next day in the afternoon. Or I can call them back if he can't stand it and they'll bring in the dentist who's off that day. Jacob makes it through the day fine.
December 18: Jacob goes to school, then to a 4:30 dentist appointment. My mother-in-law, Frances, takes him. I am at my parents' new house, supervising the moving in of all their belongings from storage. They'll be home in less than a month from spending 3 years in Kenya. I am shocked when the dentist calls my cell phone and says Jacob has a huge infection and he'll need to pull 2 teeth. I hate that I'm not with him.
December 18-31: Jacob actually has 3 teeth pulled (including the wisdom tooth that was up above the two infected teeth). The dentist was concerned about the infection, since it's so unusual in a child that age. He has sent a tissue sample to the lab at Utah Valley Regional Medical Center. Jacob is taking amoxicillin for a week. Then we have the dentist extend it for three more days so I feel comfortable sending Jake to Las Vegas with his dad and Matt. They go for the 27 and 28 to see the Blue Man Group perform. On Saturday night, the 29th, he takes his last antibiotic. He has moments of being totally himself, but he's still tired, headachy, and the swelling has not gone down. On Monday, the 31st, I get a call that the UVRMC lab isn't comfortable diagnosing the tissue sample and the think it might be more than a simple infection. They send it to Primary Children's Medical Center.
January 1: Decision. I am growing increasingly concerned about the swelling in his cheek. Although he doesn't have a fever, I'm worried that he still has an infection. Chris and I debate the options. The prudent thing, against which I have no logical objections, is to wait until morning and take him to the pediatrician. But I don't feel good about it. So off Jake and I go to the emergency room at Timpanogos Regional Hospital. We arrive at 9:30 p.m.
We see the doctor just after 10:00 p.m. He is instantly concerned about the possibility of a major infection, a fact that I find curiously reassuring. I think because it means he's taking it seriously and we won't have to sit around waiting for something to be done. He also notices that Jake's left eye is slightly protuberant, which could mean the infection is behind the eye. Jacob is started on a broad-spectrum IV antibiotic and given a cat scan. We spend the time pleasantly enough, Jake with his iPod, me with a book. At one point, I overhear the nurse on the phone talking about a patient transfer. Somehow, I have a feeling it's for Jake. At this point, I'm assuming it's a major infection that will need to be treated with IV antibiotics for several days at least. Although I'm worried, I feel confident that all will be well.
At 11:30, the doctor returns. He tells us the the cat scan is very worrying, he believes it shows a massive infection in his left cheek and going up behind his eye socket. He's arranged a transfer to Primary Children's. I'm allowed to drive Jacob there myself, but we're to go straight to the emergency room where they'll be expecting us. I call Chris to let him know where we're headed and get Jacob's coat and shoes on. We're about to be in the hands of one of the best children's hospitals in the U.S.
But we don't have the slightest idea of how our world is about to unravel.
Sunday, January 6, 2008
In the beginning . . .
Jacob was an 11-year-old with a toothache.
Now he's a cancer patient.
Actually, I don't like that term to describe him. He "isn't" anything, except Jacob. And that's true no matter what the status of his health. So he isn't a cancer patient--he's just Jacob with cancer.
I'm starting this blog as a way to keep our family and friends informed in one place. As much as I love every single individual person who has contacted us and is praying for us, I don't have the hours in the day to respond individually to each of them. So here you can get it all--treatment, troubles, and triumphs.
First triumph? We have him home. There's nothing better than having my family under one roof. In fact, I think I'll go revel in it and leave more posting until later.
Why don't you go revel with your own family--you'll never regret it.
Now he's a cancer patient.
Actually, I don't like that term to describe him. He "isn't" anything, except Jacob. And that's true no matter what the status of his health. So he isn't a cancer patient--he's just Jacob with cancer.
I'm starting this blog as a way to keep our family and friends informed in one place. As much as I love every single individual person who has contacted us and is praying for us, I don't have the hours in the day to respond individually to each of them. So here you can get it all--treatment, troubles, and triumphs.
First triumph? We have him home. There's nothing better than having my family under one roof. In fact, I think I'll go revel in it and leave more posting until later.
Why don't you go revel with your own family--you'll never regret it.
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