'Twas the week before Christmas and all through our house, we were nervous wrecks, wondering what would come out...of Scan Week.
Moreover, there was added weight to this particular set of scans, as they would serve as a signal on two fronts: The immediate term and the medium term. We are relieved to report that all scans were normal. Andrew continues to show No Evidence of Disease. Our Christmas came early.
Perhaps more importantly, however, this month marks two years since Andrew has been off active treatment for the disease. This is meaningful. High-risk Neuroblastoma is typically looked at in time periods of two years off treatment and five years off treatment. Those are our milestones. Two years is selected, because the risk of relapse is greatest in the first two years post-treatment. In high-risk Neuroblastoma, the statistics say that the chance of relapse during this time is slightly greater than 50%. Once a relapse occurs, the chances for long-term survival plummet into the single digits. I am not sure if, mathematically, this is the correct way to think about this, but when I first heard that number, the illustration that I constructed in my head was this: Every morning, when Andrew wakes up, he flips a coin to see if his cancer will return. Heads, he wins.... Therefore--at least according to my analogy--we're talking about a kid with 730 heads in a row! That is a serious amount of luck.
Looked at in that way, every day is its own milestone. But our "long-term" goal is to reach the five year mark. At five years off treatment, the feeling is that the cancer should not return. The word, "cured," is not used with this disease, but five years is nonetheless considered the marker for continued remission. Andrew will be 9 in December, 2014. Part of me wishes I could just fast-forward through the next three years to get to that date and know that he will be all right. Of course, that's not possible and, frankly, it would mean giving up the events and experiences of tomorrow and the next day and the next day, etc., which I am not sure I am prepared to do. He is exploding with growth at the moment (not physically, mind you; between his genes and the chemotherapy, he is serious shrimp material) in terms of his interests and curiosity and personality and energy and dynamism--I don't want to miss these days.
I am so grateful that the holidays are upon us. Obviously, I am grateful that we have simply reached another set of holidays. But, I appreciate this time of year so much, because--as hectic as we all get with our planning and shopping and travel and whathaveyou--these days also seem to stretch out a bit and remind us to slow down, take a break and enjoy our time with one another. These are days to be savored for their richness of family, friends, festivities and memories. Please take advantage of the time; it is truly a gift.
Merry Christmas to all and to all a good night!
Love,
Paul
Friday, December 23, 2011
Tuesday, October 11, 2011
Comfortably Thumb
This is a bit awkward, but it is time for us to go public with this and let you know that we have a fairly serious affliction in our house: Thumb-sucking. One of our children has been at it for a long, long time--9 years!--while the other is a more recent convert to the cult of thumb-suckers--a mere 3-year veteran. Obviously, we have known for a long time that we would have to confront this issue at some point--certainly the pediatrician and dentist have "encouraged" us over many visits--and help them break their habit, but there are two things that you should know:
1. We commit to these projects only gradually (read when we have no choice). Why that is, I am not sure, but it certainly seems to be our nature. For example, Andrew did not potty train until he was much older; but in that case we felt justified in waiting, as it did not seem proper or fair to ask him to potty train when he was hooked up to IV fluids. Setting that example aside, though, we did not teach Lucia how to ride a bike until she was 7 and we have no such explanation for that, we just never prioritized it (which is stunning and sad, considering how much I love bikes and cycling). In fact, Andrew does not know how to ride a bike still. He still gets around on his push bike, which is meant for a 2-year-old! It is a slightly different situation to Lucia, though (she did not have a push bike), as we do encourage him to ride his regular bike, but he just looks at us--with a fair amount of condescension--and says, Why would I bother to ride that when I can go just as fast on my push bike without all the hassle? Which is true. And for which we have no good answer. Yet. Give us time though....
And:
2. Our children are thumb junkies.
Nonetheless, a recent check-up with the dentist reminded us--once again--that the thumb-sucking really must go and now is the time. So, we conducted our intervention and have embarked on behavior modification of our children and are on Day 3 of The Program a/k/a Operation No Lisp. You may be wondering--as the sense of grim reality settles in--what kind of draconian tools and methods are involved in The Program? We won't go into too much detail here--Social Services and all--but let's just say that it involves a fair amount of surgical tape and some fairly large bribes. So far, so good, though tonight we started to see some regression as the desperation cracked through. The thumb, it seems, is a powerful, powerful drug....
To defend ourselves a bit, we do want to go on record and let you know that we did try to break Lucia of this habit previously, but crashed and burned and, consequently, aborted the mission. We were told to invest in the Thumb Guard--a device that straps onto your wrist and houses your thumb in a plastic sleeve--and have her wear it at bedtime (when she is most prone to thumb-sucking) and that this would have her free of her nightly thumb-fix in no time. There were two problems, however: The first was that Lucia's thumb in that sleeve was like Houdini in the shackled chest--total escape artist!; the second was that--once we had troubleshot the first and strapped the Thumb Guard on extra tight, so that there were no more escapes--she simply ate it! Yep, literally gnawed through that sleeve like a gerbil and rewarded herself with...wait for it...a good long thumb-suck! Lucia, 1; Thumb Guard, 0.
So, we took a hiatus. A long hiatus. But, now we are back and determined. From what we can tell, Andrew will be the easy one. For one, he is not a "natural" thumb-sucker. In truth, he only picked it up after watching his sister. For another, Andrew is really motivated by his desire for toys, so rewards work really well on him. He has already told us that he would like a Lego set and a cap gun (thank you, Noah) as his prizes once he stops--an absolute bargain versus orthodontia and speech therapy. Lucia, on the other hand, will be the real challenge. In her case, she is a lifelong thumb-sucker--it is totally instinctual to her. But, to make matters worse (and I can't believe that I am about to write this, but...), she is not motivated by "stuff"--not toys, not games, not clothes, not jewelry.... I'm sure we will come up with some prize to keep her committed, but at this point, we have no idea what that is and she has not given an indication. All I can say is, it had better not be a pony. If so, we might just take the braces and the therapy instead!
Wish us luck!
Paul & Cynthia
1. We commit to these projects only gradually (read when we have no choice). Why that is, I am not sure, but it certainly seems to be our nature. For example, Andrew did not potty train until he was much older; but in that case we felt justified in waiting, as it did not seem proper or fair to ask him to potty train when he was hooked up to IV fluids. Setting that example aside, though, we did not teach Lucia how to ride a bike until she was 7 and we have no such explanation for that, we just never prioritized it (which is stunning and sad, considering how much I love bikes and cycling). In fact, Andrew does not know how to ride a bike still. He still gets around on his push bike, which is meant for a 2-year-old! It is a slightly different situation to Lucia, though (she did not have a push bike), as we do encourage him to ride his regular bike, but he just looks at us--with a fair amount of condescension--and says, Why would I bother to ride that when I can go just as fast on my push bike without all the hassle? Which is true. And for which we have no good answer. Yet. Give us time though....
And:
2. Our children are thumb junkies.
Nonetheless, a recent check-up with the dentist reminded us--once again--that the thumb-sucking really must go and now is the time. So, we conducted our intervention and have embarked on behavior modification of our children and are on Day 3 of The Program a/k/a Operation No Lisp. You may be wondering--as the sense of grim reality settles in--what kind of draconian tools and methods are involved in The Program? We won't go into too much detail here--Social Services and all--but let's just say that it involves a fair amount of surgical tape and some fairly large bribes. So far, so good, though tonight we started to see some regression as the desperation cracked through. The thumb, it seems, is a powerful, powerful drug....
To defend ourselves a bit, we do want to go on record and let you know that we did try to break Lucia of this habit previously, but crashed and burned and, consequently, aborted the mission. We were told to invest in the Thumb Guard--a device that straps onto your wrist and houses your thumb in a plastic sleeve--and have her wear it at bedtime (when she is most prone to thumb-sucking) and that this would have her free of her nightly thumb-fix in no time. There were two problems, however: The first was that Lucia's thumb in that sleeve was like Houdini in the shackled chest--total escape artist!; the second was that--once we had troubleshot the first and strapped the Thumb Guard on extra tight, so that there were no more escapes--she simply ate it! Yep, literally gnawed through that sleeve like a gerbil and rewarded herself with...wait for it...a good long thumb-suck! Lucia, 1; Thumb Guard, 0.
So, we took a hiatus. A long hiatus. But, now we are back and determined. From what we can tell, Andrew will be the easy one. For one, he is not a "natural" thumb-sucker. In truth, he only picked it up after watching his sister. For another, Andrew is really motivated by his desire for toys, so rewards work really well on him. He has already told us that he would like a Lego set and a cap gun (thank you, Noah) as his prizes once he stops--an absolute bargain versus orthodontia and speech therapy. Lucia, on the other hand, will be the real challenge. In her case, she is a lifelong thumb-sucker--it is totally instinctual to her. But, to make matters worse (and I can't believe that I am about to write this, but...), she is not motivated by "stuff"--not toys, not games, not clothes, not jewelry.... I'm sure we will come up with some prize to keep her committed, but at this point, we have no idea what that is and she has not given an indication. All I can say is, it had better not be a pony. If so, we might just take the braces and the therapy instead!
Wish us luck!
Paul & Cynthia
Sunday, September 11, 2011
Whose Blog Is It Anyway?
Depending on how long you have been following our little family saga here, you may or may not know that this blog was originally created by our sister-in-law, immediately following Andrew's cancer diagnosis in January, 2008. Its purpose in those early days, weeks and months, was simply to allow her to disseminate updates on Andrew--as he made his way through initial treatment--to family, friends and followers (who were spread across cities, states and even countries), as efficiently as possible. At the same time, it spared us the time and energy that would have been required to update all of those people personally and allowed us to concentrate on Andrew, Lucia and ourselves. It--and she--performed perfectly.
Of course, as time elapsed and Andrew navigated treatment and we got to know our "New Normal," we started to post here on our own. First, we used this blog to express our immense gratitude for the tireless support we received from people near and far, known and unknown. Since that initial post, we have alternately preached, complained, confided, explained, and simply chronicled the journey we find ourselves on. And, at some point along the way, this blog became "ours." But, just who "we" are is a complicated issue....
You see, this blog--or should I say our intention of this blog--is that it serve as an outlet, as a manual, as an archive, and possibly more, not to mention its original purpose: A source for people to follow Andrew's progress. We come here to express our emotions and fears of having a child faced with cancer. We come here to offer whatever medical insight and knowledge we might have gathered from our fight to other families that find themselves fighting Neuroblastoma in their child. We come here with our opinions and politics and guilt. We come here to make note of certain times and events and feelings, so that we not only remember them (it is astounding how much we forget/have forgotten), but so that Lucia and Andrew will be able to come here also and learn them in the future. And we come here to report on Andrew. We do all of this in the hope that this blog helps someone, somewhere, sometime--including ourselves.
It is in the spirit of the above--and in the interest of equal time--that I want to focus on Lucia. I attended a conference on Neuroblastoma last summer and one of the presentations that I was able to hear was by a psychologist who explained that a family that is confronted with pediatric cancer experiences something akin to Post-Traumatic Stress Disorder. Certainly, that's reasonable and understandable. What is interesting, however, is the impact of that on the various family members, once the family is through the "crisis" phase and able to get some distance from treatment (obviously, this is assuming a good outcome to treatment). Her research showed:
The person least affected (usually): The patient. This is usually due to a combination of age at diagnosis--for example, most Neuroblastoma cases occur at 5 years or younger; Andrew was not quite 3--and the treatment itself, which can impact the memory (a nice cocktail of chemo and opiates!). In short, they simply forget/don't remember. We can certainly attest to that: Andrew will point to a sizable scar in his shoulder where he had multiple surgeries over a couple of years to insert and remove his central line and ports and ask, What's that? And we'll say, that's the scar from where the doctors put in and took out your line and your ports. (Keep in mind, this is where he would get "accessed" for ALL treatment--chemo, transfusions, antibiotics, blood draws, nutrition, etc.--over a two-year period, oftentimes for weeks at a time.) And he'll say--blankly--Huh. And walk off and do something else and never ask or care about it again.
Other people less affected: The parents. This is mainly because we're older and (supposedly) more mature and have the coping skills and mechanisms in place that we can allow ourselves to let go as the initial panic and "wartime" mode start to fade. In our case, I know that we struggle with a fair amount of fear at all times, but I think we have gotten quite good at compartmentalizing that and keeping it within a certain bounds.
The person/people most impacted by a cancer diagnosis: Siblings.
How would I describe Lucia? I would say that she truly fits her name: She is light. And it applies in so many ways. She is cheerful and sunny. She is bright and clever. She likes to laugh and giggle and joke. She is outgoing and social and eager to try new things. She is even physically light: She had a soccer game today and her coach commented, as he watched her dribble the ball down the field, Look at the way she just glides. That is Lucia. She is buoyancy and grace. Except when she's eating.
Unfortunately, that is not all she is, because she is also a girl who--and I have made this comment before (in fact, before I really understood its significance)--is the collateral damage of her brother's cancer treatment. The result? An uneasy and uneven relationship with her brother (I won't even attempt to analyze her relationship with us), that pivots on deep-seated resentment, jealousy and anger. This is not typical sibling rivalry or older sister/younger brother dynamics (though we have that, too), it has a grit and aggression to it that most closely resembles contempt. To be clear, this is not something that she expresses constantly. To the contrary--and I'm sure this makes her feelings even more complicated and confusing for her--I think she actually likes her brother and enjoys playing with him. But, there will be some trigger that gets pulled and--BAM!--she uncorks the ugliness. And it's dark.
From our point of view, I think the part of this that is most disconcerting is the fact that we were cognizant of the potential impact of Andrew's treatment on Lucia from the beginning and were proactive in managing the situation: One of us always tried to stay with her, while the other was in the hospital with Andrew; we surrounded her with family and friends in an effort to shield/distract her from what was going on with her brother; we never forced her to go to the hospital to visit (she didn't enjoy going) and allowed her to be as involved as she wanted to be. In short, we thought we were making all the right decisions and playing out all the right moves. Imagine what it then feels like to have her reveal--through tears--that she didn't feel like part of the family while Andrew was in treatment (for two years!); it was us--Andrew, mom and dad--and her.
Toward the end of Andrew's treatment in 2009, we did encourage Lucia to see a therapist at the hospital. She went for a few sessions--at her age (at the time), it was largely therapy through play--but then felt that she didn't want to go. The therapist, for her part, thought she was doing well (enough) and felt that it would not be wise to force her to continue. So we let it go. In hindsight, perhaps Lucia's unsinkable personality of levity and ease and resilience allowed her to simply finesse her way through....
The other quirk in Lucia's personality to come out of this? Her attitude toward sickness and injury and doctors. Fascinating. I won't go so far as to call her a hypochondriac, it's not quite that. She won't feign sickness, but she plays up any sickness or injury that actually befalls her. So:
A splinter? I think we should go to the ER!
A headache? Do I need a brain scan?
A sore throat? Maybe I need an operation to take out my tonsils?
She wants so desperately to be sick--real, legitimate, hospital sick--and it's heartbreaking in its transparency, not to mention its "tragic" irony, namely: She is an uber-healthy kid! We understand that all of this is based in attention. And, of course, given our circumstances, we have to give all of these possibilities and suggestions sufficient time and merit and discussion, rather than simply dismiss them outright. Needless to say, Lucia is intimately familiar with the nurse's office at school. Meanwhile, Andrew? Never been.
Will it always be like this? With the disdain toward her brother and the obsession with serious illness (and we haven't even touched on our relationship)? I won't pretend to know that answer. But, as with many episodes in our lives, I think we cling to the hope that--if nothing else--the expression holds true: Time heals all wounds. Is Lucia OK? The short answer is, Yes. I truly believe she is fine. Or fine enough. Does she have a fair amount of baggage courtesy of this little odyssey of ours? Yes, she has that, too. Will she figure it out? Probably. Eventually.
I was talking to someone during the time when Andrew was in active treatment and she told me that she felt--she had a premonition (I will not get drawn into commenting on the merits of premonitions, I am simply relating a story)--that Lucia would end up making Neuroblastoma her life's work. In thinking about that in the context of this post, my only wish--in the event that the premonition come true--is that she choose to do so with clear perspective and for the right reasons. It would be noble--whatever "life's work" might mean--but it should come from pure and unambiguous motivations.
Before I go, I do want to remind everyone that September--in addition to being the start of school, the start of AYSO, the start of pro football, and so many other events and obligations and distractions--is Childhood Cancer Awareness Month. Please take a moment to think of the newly diagnosed, those in active treatment, those through treatment and those whose treatment failed them. In light of the above, think, too, of their siblings, who are suffering and struggling in a different way. A pediatric cancer diagnosis is a short, short stick for a family to draw--please show your support, especially this month.
As always, thank you.
Paul
Of course, as time elapsed and Andrew navigated treatment and we got to know our "New Normal," we started to post here on our own. First, we used this blog to express our immense gratitude for the tireless support we received from people near and far, known and unknown. Since that initial post, we have alternately preached, complained, confided, explained, and simply chronicled the journey we find ourselves on. And, at some point along the way, this blog became "ours." But, just who "we" are is a complicated issue....
You see, this blog--or should I say our intention of this blog--is that it serve as an outlet, as a manual, as an archive, and possibly more, not to mention its original purpose: A source for people to follow Andrew's progress. We come here to express our emotions and fears of having a child faced with cancer. We come here to offer whatever medical insight and knowledge we might have gathered from our fight to other families that find themselves fighting Neuroblastoma in their child. We come here with our opinions and politics and guilt. We come here to make note of certain times and events and feelings, so that we not only remember them (it is astounding how much we forget/have forgotten), but so that Lucia and Andrew will be able to come here also and learn them in the future. And we come here to report on Andrew. We do all of this in the hope that this blog helps someone, somewhere, sometime--including ourselves.
It is in the spirit of the above--and in the interest of equal time--that I want to focus on Lucia. I attended a conference on Neuroblastoma last summer and one of the presentations that I was able to hear was by a psychologist who explained that a family that is confronted with pediatric cancer experiences something akin to Post-Traumatic Stress Disorder. Certainly, that's reasonable and understandable. What is interesting, however, is the impact of that on the various family members, once the family is through the "crisis" phase and able to get some distance from treatment (obviously, this is assuming a good outcome to treatment). Her research showed:
The person least affected (usually): The patient. This is usually due to a combination of age at diagnosis--for example, most Neuroblastoma cases occur at 5 years or younger; Andrew was not quite 3--and the treatment itself, which can impact the memory (a nice cocktail of chemo and opiates!). In short, they simply forget/don't remember. We can certainly attest to that: Andrew will point to a sizable scar in his shoulder where he had multiple surgeries over a couple of years to insert and remove his central line and ports and ask, What's that? And we'll say, that's the scar from where the doctors put in and took out your line and your ports. (Keep in mind, this is where he would get "accessed" for ALL treatment--chemo, transfusions, antibiotics, blood draws, nutrition, etc.--over a two-year period, oftentimes for weeks at a time.) And he'll say--blankly--Huh. And walk off and do something else and never ask or care about it again.
Other people less affected: The parents. This is mainly because we're older and (supposedly) more mature and have the coping skills and mechanisms in place that we can allow ourselves to let go as the initial panic and "wartime" mode start to fade. In our case, I know that we struggle with a fair amount of fear at all times, but I think we have gotten quite good at compartmentalizing that and keeping it within a certain bounds.
The person/people most impacted by a cancer diagnosis: Siblings.
How would I describe Lucia? I would say that she truly fits her name: She is light. And it applies in so many ways. She is cheerful and sunny. She is bright and clever. She likes to laugh and giggle and joke. She is outgoing and social and eager to try new things. She is even physically light: She had a soccer game today and her coach commented, as he watched her dribble the ball down the field, Look at the way she just glides. That is Lucia. She is buoyancy and grace. Except when she's eating.
Unfortunately, that is not all she is, because she is also a girl who--and I have made this comment before (in fact, before I really understood its significance)--is the collateral damage of her brother's cancer treatment. The result? An uneasy and uneven relationship with her brother (I won't even attempt to analyze her relationship with us), that pivots on deep-seated resentment, jealousy and anger. This is not typical sibling rivalry or older sister/younger brother dynamics (though we have that, too), it has a grit and aggression to it that most closely resembles contempt. To be clear, this is not something that she expresses constantly. To the contrary--and I'm sure this makes her feelings even more complicated and confusing for her--I think she actually likes her brother and enjoys playing with him. But, there will be some trigger that gets pulled and--BAM!--she uncorks the ugliness. And it's dark.
From our point of view, I think the part of this that is most disconcerting is the fact that we were cognizant of the potential impact of Andrew's treatment on Lucia from the beginning and were proactive in managing the situation: One of us always tried to stay with her, while the other was in the hospital with Andrew; we surrounded her with family and friends in an effort to shield/distract her from what was going on with her brother; we never forced her to go to the hospital to visit (she didn't enjoy going) and allowed her to be as involved as she wanted to be. In short, we thought we were making all the right decisions and playing out all the right moves. Imagine what it then feels like to have her reveal--through tears--that she didn't feel like part of the family while Andrew was in treatment (for two years!); it was us--Andrew, mom and dad--and her.
Toward the end of Andrew's treatment in 2009, we did encourage Lucia to see a therapist at the hospital. She went for a few sessions--at her age (at the time), it was largely therapy through play--but then felt that she didn't want to go. The therapist, for her part, thought she was doing well (enough) and felt that it would not be wise to force her to continue. So we let it go. In hindsight, perhaps Lucia's unsinkable personality of levity and ease and resilience allowed her to simply finesse her way through....
The other quirk in Lucia's personality to come out of this? Her attitude toward sickness and injury and doctors. Fascinating. I won't go so far as to call her a hypochondriac, it's not quite that. She won't feign sickness, but she plays up any sickness or injury that actually befalls her. So:
A splinter? I think we should go to the ER!
A headache? Do I need a brain scan?
A sore throat? Maybe I need an operation to take out my tonsils?
She wants so desperately to be sick--real, legitimate, hospital sick--and it's heartbreaking in its transparency, not to mention its "tragic" irony, namely: She is an uber-healthy kid! We understand that all of this is based in attention. And, of course, given our circumstances, we have to give all of these possibilities and suggestions sufficient time and merit and discussion, rather than simply dismiss them outright. Needless to say, Lucia is intimately familiar with the nurse's office at school. Meanwhile, Andrew? Never been.
Will it always be like this? With the disdain toward her brother and the obsession with serious illness (and we haven't even touched on our relationship)? I won't pretend to know that answer. But, as with many episodes in our lives, I think we cling to the hope that--if nothing else--the expression holds true: Time heals all wounds. Is Lucia OK? The short answer is, Yes. I truly believe she is fine. Or fine enough. Does she have a fair amount of baggage courtesy of this little odyssey of ours? Yes, she has that, too. Will she figure it out? Probably. Eventually.
I was talking to someone during the time when Andrew was in active treatment and she told me that she felt--she had a premonition (I will not get drawn into commenting on the merits of premonitions, I am simply relating a story)--that Lucia would end up making Neuroblastoma her life's work. In thinking about that in the context of this post, my only wish--in the event that the premonition come true--is that she choose to do so with clear perspective and for the right reasons. It would be noble--whatever "life's work" might mean--but it should come from pure and unambiguous motivations.
Before I go, I do want to remind everyone that September--in addition to being the start of school, the start of AYSO, the start of pro football, and so many other events and obligations and distractions--is Childhood Cancer Awareness Month. Please take a moment to think of the newly diagnosed, those in active treatment, those through treatment and those whose treatment failed them. In light of the above, think, too, of their siblings, who are suffering and struggling in a different way. A pediatric cancer diagnosis is a short, short stick for a family to draw--please show your support, especially this month.
As always, thank you.
Paul
Tuesday, May 24, 2011
Saturday, April 23, 2011
The Low Spark of Thin-Haired Boys
Andrew is advancing. He is growing: Gaining strength, gaining confidence, gaining ability. There is a crackle and a pop and a hiss coming off of him lately. I might go so far as to say he is starting to throw off heat. In short, he seems to have stepped into a role that has been waiting for him: That of a typical, six-year-old boy.
He is on the verge of completing Kindergarten and is starting to gain traction in his reading and writing. He is starting to grasp his phonics and attempts to spell words. The occupational therapy that he attends twice a week is helping him catch up in the areas of his fine and gross motor skills. Just today, he showed me how to do Hopscotch; a few months ago, Andrew was not able to hop. He has been playing baseball this spring and seems to really enjoy the game. And--if I can brag a moment--he is quite good at batting. (It's not necessary to bring up fielding right now, we'll just agree to call it a work in progress.) He builds Lego's and loves anything Star Wars and is now obsessed with (and, again, surprisingly good at) Angry Birds on the iPad. Again, thanks to OT, he is becoming more self-sufficient, dressing and undressing himself, brushing his teeth, etc. He has a new vitality.
But, those are the good things only; there is more to what's going on lately with Andrew: He is, as it turns out, a little bit of a...(gulp) mischief-maker. He torments his sister. He (tries to) manipulate his mom and dad. He messes with the dog. He tests the limits of what qualifies as "potty talk." (Come to think of it, he just tests limits in general.) He is messy and dirty and loud and crude and walks around holding his "peanuts," while trying to bargain for something inappropriate for breakfast--like gum or chocolate.... He even has built-in menacing theme music, as he constantly hums "The Imperial March" while he careens through his day. And, do you know what? It's great. It's really great. I wouldn't want it any other way. Don't get me wrong, it's not OK, in that it's not acceptable behavior and he gets reminded of that. But--secretly--I get considerable joy and satisfaction out of seeing him ignite in this way. This is what boys do. And I am so grateful for the experience, even when I am not always enjoying it.
Medically, there are changes afoot for us: We met with Andrew's oncologist in March and made the decision to move from quarterly scans and monthly check-ups to semi-annual scans and bi-monthly check-ups. In other words, we are suddenly seeing considerably less of the clinic and radiology department. In addition, we have decided to convert Andrew from CT scans to MRI's. This was not an easy decision to make, as both are flawed--CT's have significant radiation, especially given the cumulative number Andrew has experienced, while MRI's require anesthesia--but we feel that MRI's are the slightly "less worse" option. The risks of an MRI, namely anesthesia, are only just being studied and more theoretical, so that is the path we have chosen. Perhaps the change in schedule and the fact that the reminders of cancer/cancer treatment are less present now has led to this resurgence in Andrew....
Life has not been all clear skies and smooth sailing, however: Earlier this month, Andrew had to have two "pre-cancerous" moles removed and will now have to be seen by a dermatologist every six months. This is simply what it is to be a cancer survivor: If something is suspect, you don't take chances, you eliminate it. Of course, this has us questioning the merit and allure of living in Southern California.... And, as always, there are our concerns over the "late effects" from his treatment, especially in the area of brain development and cognitive function. Just this week, Cynthia and I watched a presentation on school issues for childhood cancer survivors. Suffice it to say, they are numerous and it is daunting material. We find ourselves wishing we knew more about the formation of myelin sheathing and neural connections.... It goes without saying that--aside from the ever-present fear of relapse--this is what most consumes us.
I am sure I have alluded to it previously, but I will state it flatly now: I am oddly superstitious. Not consistently so and not to-the-point-of-paralysis so, but just...moderately so.... When Andrew was diagnosed and started treatment, our family had green wristbands made with the word, Warrior, etched on them, which everyone wore as a tribute to Andrew and what he was going through. Most, if not all, people have long since removed them. Yet, despite the conclusion of Andrew's treatment last December, I have continued to wear mine. Three years and three months, it has remained on my wrist. Honestly, my thinking was, You don't mess with a streak. But, the other day, my wristband broke. And, in my own superstitious way, I have been trying to process its meaning ever since. At first, I panicked and grew terribly concerned that it was a bad sign--the streak had literally been broken and that couldn't be good news! But, I have remained calm and continued to consider possible meanings and I am starting to feel peace with the notion that perhaps it broke because it is no longer necessary: Andrew is no longer a Warrior. He is a cancer survivor, who is now buzzing and whirring and smoldering his way into simple boyhood. Perhaps that is the message that Andrew has been telegraphing lately? Perhaps that is where I need to place my faith? It is especially helpful, when I put this in the context of this weekend. After all, it is Easter tomorrow, a time when we celebrate the idea of rebirth, resurrection, renewal. This is something I can embrace. So be it.
Happy Easter. Take care.
Paul
He is on the verge of completing Kindergarten and is starting to gain traction in his reading and writing. He is starting to grasp his phonics and attempts to spell words. The occupational therapy that he attends twice a week is helping him catch up in the areas of his fine and gross motor skills. Just today, he showed me how to do Hopscotch; a few months ago, Andrew was not able to hop. He has been playing baseball this spring and seems to really enjoy the game. And--if I can brag a moment--he is quite good at batting. (It's not necessary to bring up fielding right now, we'll just agree to call it a work in progress.) He builds Lego's and loves anything Star Wars and is now obsessed with (and, again, surprisingly good at) Angry Birds on the iPad. Again, thanks to OT, he is becoming more self-sufficient, dressing and undressing himself, brushing his teeth, etc. He has a new vitality.
But, those are the good things only; there is more to what's going on lately with Andrew: He is, as it turns out, a little bit of a...(gulp) mischief-maker. He torments his sister. He (tries to) manipulate his mom and dad. He messes with the dog. He tests the limits of what qualifies as "potty talk." (Come to think of it, he just tests limits in general.) He is messy and dirty and loud and crude and walks around holding his "peanuts," while trying to bargain for something inappropriate for breakfast--like gum or chocolate.... He even has built-in menacing theme music, as he constantly hums "The Imperial March" while he careens through his day. And, do you know what? It's great. It's really great. I wouldn't want it any other way. Don't get me wrong, it's not OK, in that it's not acceptable behavior and he gets reminded of that. But--secretly--I get considerable joy and satisfaction out of seeing him ignite in this way. This is what boys do. And I am so grateful for the experience, even when I am not always enjoying it.
Medically, there are changes afoot for us: We met with Andrew's oncologist in March and made the decision to move from quarterly scans and monthly check-ups to semi-annual scans and bi-monthly check-ups. In other words, we are suddenly seeing considerably less of the clinic and radiology department. In addition, we have decided to convert Andrew from CT scans to MRI's. This was not an easy decision to make, as both are flawed--CT's have significant radiation, especially given the cumulative number Andrew has experienced, while MRI's require anesthesia--but we feel that MRI's are the slightly "less worse" option. The risks of an MRI, namely anesthesia, are only just being studied and more theoretical, so that is the path we have chosen. Perhaps the change in schedule and the fact that the reminders of cancer/cancer treatment are less present now has led to this resurgence in Andrew....
Life has not been all clear skies and smooth sailing, however: Earlier this month, Andrew had to have two "pre-cancerous" moles removed and will now have to be seen by a dermatologist every six months. This is simply what it is to be a cancer survivor: If something is suspect, you don't take chances, you eliminate it. Of course, this has us questioning the merit and allure of living in Southern California.... And, as always, there are our concerns over the "late effects" from his treatment, especially in the area of brain development and cognitive function. Just this week, Cynthia and I watched a presentation on school issues for childhood cancer survivors. Suffice it to say, they are numerous and it is daunting material. We find ourselves wishing we knew more about the formation of myelin sheathing and neural connections.... It goes without saying that--aside from the ever-present fear of relapse--this is what most consumes us.
I am sure I have alluded to it previously, but I will state it flatly now: I am oddly superstitious. Not consistently so and not to-the-point-of-paralysis so, but just...moderately so.... When Andrew was diagnosed and started treatment, our family had green wristbands made with the word, Warrior, etched on them, which everyone wore as a tribute to Andrew and what he was going through. Most, if not all, people have long since removed them. Yet, despite the conclusion of Andrew's treatment last December, I have continued to wear mine. Three years and three months, it has remained on my wrist. Honestly, my thinking was, You don't mess with a streak. But, the other day, my wristband broke. And, in my own superstitious way, I have been trying to process its meaning ever since. At first, I panicked and grew terribly concerned that it was a bad sign--the streak had literally been broken and that couldn't be good news! But, I have remained calm and continued to consider possible meanings and I am starting to feel peace with the notion that perhaps it broke because it is no longer necessary: Andrew is no longer a Warrior. He is a cancer survivor, who is now buzzing and whirring and smoldering his way into simple boyhood. Perhaps that is the message that Andrew has been telegraphing lately? Perhaps that is where I need to place my faith? It is especially helpful, when I put this in the context of this weekend. After all, it is Easter tomorrow, a time when we celebrate the idea of rebirth, resurrection, renewal. This is something I can embrace. So be it.
Happy Easter. Take care.
Paul
Friday, February 25, 2011
Leggo my Lego!
This weekend we celebrate Andrew's 6th birthday.
I just had to let that sink in for a moment.... He is so excited for his party. He is consumed with Star Wars, so we are hosting Obi Wan Kenobi and Darth Vader for a little lightsaber duel at our house. And pizza. It's a little-known fact that Jedi Warriors live on a strict diet of cheese pizza and lemon-lime Gatorade, otherwise known as Yoda Juice. Speaking of Yoda, equally consumed Andrew is with Lego's. He has been dreaming of the boxes upon boxes of Star Wars Lego sets that he will receive for his birthday and the hours and hours of building he (read I) will do. Good times, good times....
He also wants to go to his favorite restaurant, Bottega Louie, for dinner. He will eat their cheese pizza--the best pizza EVER according to him--and order a chocolate souffle, which he will NOT share. Pretty sophisticated taste for a little kid who otherwise sustains himself with hot dogs and bagel sandwiches.
The weather is not supposed to cooperate: A winter storm is passing through from Canada, dropping the temperature about 10 degrees, as well as a fair amount of rain. Not the kind of conditions you're looking for when having rangy lightsaber fights in the yard.... But, then again, we likely won't notice or feel it. After all, didn't we just tell you: This weekend we celebrate Andrew's 6th birthday.
Love,
Paul & Cynthia
I just had to let that sink in for a moment.... He is so excited for his party. He is consumed with Star Wars, so we are hosting Obi Wan Kenobi and Darth Vader for a little lightsaber duel at our house. And pizza. It's a little-known fact that Jedi Warriors live on a strict diet of cheese pizza and lemon-lime Gatorade, otherwise known as Yoda Juice. Speaking of Yoda, equally consumed Andrew is with Lego's. He has been dreaming of the boxes upon boxes of Star Wars Lego sets that he will receive for his birthday and the hours and hours of building he (read I) will do. Good times, good times....
He also wants to go to his favorite restaurant, Bottega Louie, for dinner. He will eat their cheese pizza--the best pizza EVER according to him--and order a chocolate souffle, which he will NOT share. Pretty sophisticated taste for a little kid who otherwise sustains himself with hot dogs and bagel sandwiches.
The weather is not supposed to cooperate: A winter storm is passing through from Canada, dropping the temperature about 10 degrees, as well as a fair amount of rain. Not the kind of conditions you're looking for when having rangy lightsaber fights in the yard.... But, then again, we likely won't notice or feel it. After all, didn't we just tell you: This weekend we celebrate Andrew's 6th birthday.
Love,
Paul & Cynthia
Monday, January 17, 2011
Clear Lung
Due to Andrew's oncologist's vacation schedule, the CT scan of Andrew's lungs was moved up to the 14th. We went in Friday morning for the scan and were then sent into one of the clinic rooms to wait for his oncologist with the results. He came into the room practically dancing! The spot is gone and the lung is clear! This is the best possible news.
We are so grateful and relieved and, now--finally--looking forward to 2011. Thank you all for following.
Paul & Cynthia
We are so grateful and relieved and, now--finally--looking forward to 2011. Thank you all for following.
Paul & Cynthia
Subscribe to:
Posts (Atom)