It’s been a long road, and we've only just begun
Please accept my apologies for being so delinquent in posting an update to our blog. To be completely candid, Cindy and I were feeling a bit awkward about how many of the details of our everyday personal life we were hanging out on the Internet for public consumption, but a surprisingly large number of you have told me that you’re concerned for Samantha and appreciate our candor, so we’ll give it another go. This may seem odd, but knowing that so many people are keeping her in their thoughts and prayers is a source of strength for our family, so thank you.
Additionally, my late night writing time has been filled trying to catch up on either work or sleep. Last month seems like a bad dream looking back on it. Samantha was very very angry about having to be back in treatment and struggled to find productive ways to express herself. She went through phases where in turn she decided she hated me more than anything in life, then Cindy, then Joan (our nanny), then G-d. More than once she threatened to run away, and even declared her intent at one point to permanently defect to the Metzger clan next door and become one of their kids instead of one of ours.
As always, the professionals at the Dana Farber came to our rescue and Samantha spent an afternoon with Cori, her psychologist there, talking about how “stinky” brain tumors are in general, drawing pictures of her “stinky brain tumor,” and talking about how certain medicines can help make them get smaller. She was trying to focus Samantha’s anger against her tumor instead of against her caregivers. As Samantha processed what Cori said and was able to express her feelings more to us, she even wrote an angry note to G-d and asked Cindy to have someone put it in the Western Wall in Jerusalem; eventually her anger dissipated.
But she still didn’t want to take her meds, and trust me we tried every negotiating tactic, trick and bribe we could think of. Cindy was far more patient than I was with Samantha’s medicine-time shenanigans (often lasting over an hour), and I’m embarrassed at how many nights ended up in a heated battle between father and daughter about her theatrics about getting her daily dose of antibiotics down. Sammi’s acting out contributed to a heightened anxiety level in all members of our household. Mikki and Ali, who were missing their bedtime routines with Mom and Dad while we focused on Samantha, also both started acting out in different ways, and it became visibly clear to us that this was beginning to take a big toll on them as well.
As the beginning of her second cycle approached in mid-November, tensions in our house were running very high. The first four days of each cycle involve a very heavy oral medicine regimen, and we dreaded the thought of trying to get her to take a panoply of different meds every six hours (including one in the middle of the night). “What if she simply refuses to take them?” we inquired at the Dana Farber. The message came back loud and clear: be as patient as you can be, but ultimately it was our job as parents to make sure the medicine got in her body one way or another.
We were bullish going into the first night. Samantha only had to take the “yummy” medicine – the one she’d been able to take during the school day in five seconds just six weeks before, but Samantha was visibly anxious and stonewalled. I was traveling for work and after an hour and a half of listening, talking, cajoling and reminding her how good it tasted, Cindy had to physically force it down. Half the dose dribbled down her chin and Cindy went to refill the syringe. When she got back, Sammi was screaming, “Mommy, I can take it -- it’s good, don’t force it.” The other half went down easily and Sammi padded off to bed, but Cindy was spent and sat on her bed alone quietly crying and trying to regain her composure. Over two hours after she began giving Sammi her medicine, Cindy headed for a Rashi board meeting – an hour late, and emotionally drained – but she’d broken through the first barrier.
The next two days were easier, but unfortunately, as with the first cycle, by the third day, she experienced extreme nausea, couldn’t keep any food or water down and was vomiting every about three to four times per hour. Needless to say, her motivation to continue with treatment dwindled and we began a downward spiral. In the end, after trying every trick in our arsenal and on the edge of both physical and emotional exhaustion, we again had to resort to using force. Without getting into gory details, let me assure you that pinning my screaming 5 year old to the floor and physically forcing medicine down her throat is among the worst things I have ever done in my life, as a parent or otherwise. As I write this, I can no longer feel the violence inherent in the act, but I can picture the scene shortly after the second forced dose – our bedroom floor, 2 am on a cold Saturday night, Samantha curled up on the floor in a fetal position, thumb in mouth, peacefully asleep, Cindy and I sitting on the bed, looking down at a mess of medicine dispensing devices, assorted chasers and other paraphernalia strewn about the room, holding each other, sobbing… how did it come to this?
The next day we were literally so drained we could barely get out of bed; I can honestly say that I have never been as emotionally raw in my entire life as I was in the period between then and end of the Thanksgiving holiday.
We knew we needed to come up with something new, and shortly thereafter we did come up with the ultimate bribe. As many of you know, Samantha has wanted a dog from the time she turned 3. At that time, in a moment of weakness, I told her that when her as yet unborn sister (Cindy was 8 months pregnant with Ali at the time) was her age, that we could get a dog. Much to my chagrin, the child has the memory of a steel trap and she never forgot that statement. She and Mikki frequently reminded me of it, and despite my attempts to morph that promise into perhaps having another sibling, the kids were set on a puppy. So the new deal in our house became that Samantha could earn quarters by taking her meds; when she has enough money, she can get a dog. Shortly after the offer was first made, Samantha looked at me smugly and said “Daddy, I’m going to get a dog.” She looked crestfallen when I corrected her by saying she wasn’t going to get a dog (with the sense of entitlement that the word “get” carries), but relief spread across her face when I explained that she had the chance to earn a dog, but that it was ultimately up to her.
Since the advent of the dog jar, it’s been almost exactly six weeks and I can tell you that the majority of the medicine related shenanigans are now gone – she takes her meds with only a modicum of fussing, and our whole house is back on a more even keel as a result. Part of this breakthrough is no doubt the realization that she’s going to have to take her meds whether she fusses or not, but given the glint in her eye every time the “d” word is mentioned, I suspect a fair bit has to do with the increasing weight of the dog jar. As I write this we’re in the first day of the third cycle (the heavy oral part), so Cindy and I have our fingers crossed that her motivation to own a dog will help carry her through the ordeal to come over the next several days.
It’s late and I have to be up again in a few hours to play pharmacist, but I’ll try to post another update in the next few days about other major developments in December, including an update on Samantha’s MRI last week.
Additionally, my late night writing time has been filled trying to catch up on either work or sleep. Last month seems like a bad dream looking back on it. Samantha was very very angry about having to be back in treatment and struggled to find productive ways to express herself. She went through phases where in turn she decided she hated me more than anything in life, then Cindy, then Joan (our nanny), then G-d. More than once she threatened to run away, and even declared her intent at one point to permanently defect to the Metzger clan next door and become one of their kids instead of one of ours.
As always, the professionals at the Dana Farber came to our rescue and Samantha spent an afternoon with Cori, her psychologist there, talking about how “stinky” brain tumors are in general, drawing pictures of her “stinky brain tumor,” and talking about how certain medicines can help make them get smaller. She was trying to focus Samantha’s anger against her tumor instead of against her caregivers. As Samantha processed what Cori said and was able to express her feelings more to us, she even wrote an angry note to G-d and asked Cindy to have someone put it in the Western Wall in Jerusalem; eventually her anger dissipated.
But she still didn’t want to take her meds, and trust me we tried every negotiating tactic, trick and bribe we could think of. Cindy was far more patient than I was with Samantha’s medicine-time shenanigans (often lasting over an hour), and I’m embarrassed at how many nights ended up in a heated battle between father and daughter about her theatrics about getting her daily dose of antibiotics down. Sammi’s acting out contributed to a heightened anxiety level in all members of our household. Mikki and Ali, who were missing their bedtime routines with Mom and Dad while we focused on Samantha, also both started acting out in different ways, and it became visibly clear to us that this was beginning to take a big toll on them as well.
As the beginning of her second cycle approached in mid-November, tensions in our house were running very high. The first four days of each cycle involve a very heavy oral medicine regimen, and we dreaded the thought of trying to get her to take a panoply of different meds every six hours (including one in the middle of the night). “What if she simply refuses to take them?” we inquired at the Dana Farber. The message came back loud and clear: be as patient as you can be, but ultimately it was our job as parents to make sure the medicine got in her body one way or another.
We were bullish going into the first night. Samantha only had to take the “yummy” medicine – the one she’d been able to take during the school day in five seconds just six weeks before, but Samantha was visibly anxious and stonewalled. I was traveling for work and after an hour and a half of listening, talking, cajoling and reminding her how good it tasted, Cindy had to physically force it down. Half the dose dribbled down her chin and Cindy went to refill the syringe. When she got back, Sammi was screaming, “Mommy, I can take it -- it’s good, don’t force it.” The other half went down easily and Sammi padded off to bed, but Cindy was spent and sat on her bed alone quietly crying and trying to regain her composure. Over two hours after she began giving Sammi her medicine, Cindy headed for a Rashi board meeting – an hour late, and emotionally drained – but she’d broken through the first barrier.
The next two days were easier, but unfortunately, as with the first cycle, by the third day, she experienced extreme nausea, couldn’t keep any food or water down and was vomiting every about three to four times per hour. Needless to say, her motivation to continue with treatment dwindled and we began a downward spiral. In the end, after trying every trick in our arsenal and on the edge of both physical and emotional exhaustion, we again had to resort to using force. Without getting into gory details, let me assure you that pinning my screaming 5 year old to the floor and physically forcing medicine down her throat is among the worst things I have ever done in my life, as a parent or otherwise. As I write this, I can no longer feel the violence inherent in the act, but I can picture the scene shortly after the second forced dose – our bedroom floor, 2 am on a cold Saturday night, Samantha curled up on the floor in a fetal position, thumb in mouth, peacefully asleep, Cindy and I sitting on the bed, looking down at a mess of medicine dispensing devices, assorted chasers and other paraphernalia strewn about the room, holding each other, sobbing… how did it come to this?
The next day we were literally so drained we could barely get out of bed; I can honestly say that I have never been as emotionally raw in my entire life as I was in the period between then and end of the Thanksgiving holiday.
We knew we needed to come up with something new, and shortly thereafter we did come up with the ultimate bribe. As many of you know, Samantha has wanted a dog from the time she turned 3. At that time, in a moment of weakness, I told her that when her as yet unborn sister (Cindy was 8 months pregnant with Ali at the time) was her age, that we could get a dog. Much to my chagrin, the child has the memory of a steel trap and she never forgot that statement. She and Mikki frequently reminded me of it, and despite my attempts to morph that promise into perhaps having another sibling, the kids were set on a puppy. So the new deal in our house became that Samantha could earn quarters by taking her meds; when she has enough money, she can get a dog. Shortly after the offer was first made, Samantha looked at me smugly and said “Daddy, I’m going to get a dog.” She looked crestfallen when I corrected her by saying she wasn’t going to get a dog (with the sense of entitlement that the word “get” carries), but relief spread across her face when I explained that she had the chance to earn a dog, but that it was ultimately up to her.
Since the advent of the dog jar, it’s been almost exactly six weeks and I can tell you that the majority of the medicine related shenanigans are now gone – she takes her meds with only a modicum of fussing, and our whole house is back on a more even keel as a result. Part of this breakthrough is no doubt the realization that she’s going to have to take her meds whether she fusses or not, but given the glint in her eye every time the “d” word is mentioned, I suspect a fair bit has to do with the increasing weight of the dog jar. As I write this we’re in the first day of the third cycle (the heavy oral part), so Cindy and I have our fingers crossed that her motivation to own a dog will help carry her through the ordeal to come over the next several days.
It’s late and I have to be up again in a few hours to play pharmacist, but I’ll try to post another update in the next few days about other major developments in December, including an update on Samantha’s MRI last week.
posted by Samantha J @ 11:33 PM
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