This is Going to be Harder Than We Thought
Well, we made it through the hardest part of the first cycle, but I have to admit that I think I was pre-emptive in celebrating Samantha’s ability to take these meds. Turns out that Saturday, when two new additional medicines were introduced, would prove to be way harder than we expected. I started the day on an optimistic note, bringing her medicine into her room at 7 am so she could take it quickly – hoping to minimize the disruption to the game she was playing with her sisters. She looked wide eyed at the size of the second (new) syringe (3 ml vs. 0.6 ml of the other medicine), decided she really didn’t care for the flavor, and proceeded to spit it back up onto her rug and carpet. Next we went down to the kitchen, and after some verbal sparring, I was able to convince Samantha to get the meds down with a slightly different formulation (thank god she was working hard to earn her Webkin or else I don’t think I could have convinced her to try again). Unfortunately, Samantha didn’t tolerate the medicine well, and I failed to make sure she had a decent breakfast in her belly before scooting off to make more mischief with her sisters. At about 11 am she started to vomit and she ended up spending most of the day praying to the porcelain god. We frankly lost count, but Cindy thinks she vomited or dry heaved at the toilet at least 14 times over the next 4-5 hours.
By the mid-afternoon, Sammi was lethargic and starting to get dehydrated but refused to try to get any nourishment into her body (and who could blame her?). We’ve had this happen before, and in the end one of us usually ends up taking her into Children’s Hospital and spending the night with her on an IV so she can get her fluids. This you can imagine, is not a lot of fun for anyone involved plus hospitals are depressing (the food is actually not that bad, but they have a lot of sick people there, you know?). Plus, if the last chemo was any indication, we’ll end up with enough hospital stays over the next 12 months (every time she gets a fever of over 100 she has to go in to the ER and if her counts are too low she ends up getting admitted for observation). Worse yet, we started to stress about getting the medications into her – I think it was Yogi Berra who said “100% of medicine not taken, doesn’t help” (ok, he didn’t really say that, but it’s the sort of thing he would have said if he were an oncologist not a baseball player). She obviously couldn’t take her 1 pm dose and we were quite eager to get her back on track.
So, we groveled and pleaded with her to nibble on some toast and ultimately, Safta Linda (my mother) came to the rescue with an emergency run to procure some delicious slushies. She perked up with a little sugar and by 3 pm we had our vivacious little girl back, but she was understandably apprehensive about her next dose. The Dana Farber prescribed a second anti-nausea medication which she could take on top of the one she was already on, and Zadie (my father) took one for the team by driving downtown to Children’s Hospital to pick up the Rx. I have to admit that the prospect of having to get another squirt of anything into her mouth seemed daunting, but if it would help her keep the chemo down, we were open to trying. At around 5 pm, I donned my hospital mask and gloves and opened the do-it-yourself pharma factory in our kitchen to concoct yet a different formulation (thanks Liz for all of the ideas!) – mixed with liquid grape jello this time – which she was able to get down after only minimal protests. Thankfully she held it down and was able to eat a decent supper.
Because we missed her 1 pm dose, we now need a 4th day of a middle-of-the-night medication. Whereas the other 3 nights had just been a little squirt of the first med (which she actually likes), this would be a 4 med affair, and because the doses were larger, they would require actually waking her up to get her to sit up and swallow them. To make matters worse, this round was required to be delivered on an empty stomach, so we were pretty convinced that we’d be up all night with her vomiting again even if we could get the meds into her in the first instance.
Cindy and I steeled ourselves and went into her room together to wake up our little girl. Samantha was not happy with us and proceeded to cry loud enough to wake Mikki, so we took her into our room to try to calm her down. So there we were – 1 am on a Saturday night, sitting on my bed watching Dragon Tales on TiVo, negotiating, pleading with our crying 5 year old to take her medicine. It was quite a sight to behold (she can be a stubborn little coot, especially when woken up from a sound sleep), but we ultimately prevailed and afterwards she was able to sleep uneventfully through the rest of the night. By Sunday morning, Cindy and I were emotionally and physically exhausted, and are eagerly hoping we can convince her to learn to take pills over the next 5 1/2 weeks before the next cycle begins.
The saddest thing about all of this is that if you were hanging around my house on any given day lately, you truly wouldn’t know that Samantha was sick. While the MRIs clearly show resumed tumor growth, other than a slight amount of continued right sided weakness, the patient appears outwardly very healthy. Like most 5 year olds, she has a zest for life – she has a great sense of humor, has demonstrated increasing intellectual curiosity as she immerses herself in kindergarten and loves to play. She learned to flip herself over on our backyard swing set trapeze recently, and, much to Michela’s chagrin, gets tremendous satisfaction out of being able to do something in the physical realm that her older sister has not yet mastered. We know we have no choice but to pump this toxic crap into her body to try to arrest the tumor growth, but there’s a disconnect when you’re with her that is somewhat disconcerting; it saddens us to know that as the course of chemo progresses, the medicine we’re giving her will inevitably cause her inner light to shine less brightly.
Many of you have asked us directly or indirectly recently about Samantha’s prospects. This question is somewhat complicated by the presence of a possible second tumor I mentioned several entries ago. We have since talked with several experts about this and I think the short answer is that they really don’t know what it is that they’re seeing on the scan, other than to observe that it is likely to be related in some way, is absolutely inoperable due to it’s location and appears to have been there since before her surgery two and a half years ago. This is clearly not good news, but as one expert advised, “Don’t go looking for additional problems. Focus on getting the primary tumor under control and only worry about the second mass if/when absolutely necessary.”
More broadly, in terms of relevant statistics, unfortunately there are few enough cases of what Samantha has, and enough variety in the fact pattern of the cases that do exist, that reliable outcomes data is essentially unavailable. When she was first diagnosed, we were told that this tumor type had a 10-year survival rate of approximately 80%, but a portion of those cases are kids whose tumors were totally resected upon initial surgery, virtually all of whom survive. Of the partial resection cases, a minority of the partially resected tumors never resume growth (and hence 100% of those kids also survive), although the vast majority do within 5-6 years. I haven’t pushed hard enough on the right sources yet to clarify what the data has to say about Samantha’s specific fact pattern (yup, it’s on the to do list), but I suspect an honest assessment of her prospects at this point would be substantially lower than we previously thought.
In terms of her treatment path, we always knew that current forms of chemo are not curative for this tumor type. In a way our recent setback was something we always knew would likely happen – we just hoped it wouldn’t and, if it did, hoped we’d have more time between treatments. As the doctors explain it, the goal is to use the chemo to arrest the growth of the tumor long enough for new, presumably less toxic and more effective treatment protocols to be developed (in the best case), or for her to be as old as possible before she has to undergo radiation treatment. The later path is often successful in controlling tumors like this over the longer term, but also has some horrible long term side effects (permanent IQ loss of 10-20% in some studies) as well as a 3% chance of a secondary malignant tumor for which there’s no cure (as an aside, her current TPCV protocol has a 1% chance of a secondary leukemia, for which there’s a 50% cure rate – so a 0.5% chance over the long term that this treatment leads to the worst case outcome).
Our view, largely driven by input from the team of neuro-oncologists, neurologists and neuro-surgeons we most often speak with, has always been that radiation was something we may ultimately need, but that we’d like to delay for as long as possible (3% of giving your child a medicine which leads to certain death is very scary). That said, the radiation community argues that those outcome data is, by definition, based on 10-20 year old cases, so newer methods of delivery may in fact be substantially less toxic and that getting to the tumor while it’s as small as possible (e.g., not waiting for 3, 4 or more chemo regimens to fail, with tumor resuming growth, getting bigger, doing more damage in between) is the best path to long term success. We are going in for a radiation consult at some point in the next few weeks – fortunately one of the leaders in the world in this field resides in Boston – so we’ll know more soon.
This is why the efforts we’ve launched to increase funding for research in this field is so critical to our family. Most, if not all, of the people reading this blog are supporters of Team Samantha and for that we’re deeply grateful. I’ll provide a more detailed update on exactly what we’re up to at some point soon (lots of good stories there, as you might imagine) but suffice it to say that we’re working hard to invest your capital wisely on behalf of Samantha and kids like her, while pushing as hard as we can to get targeted research launched as soon as we practically can. Here’s hoping those dedicated, clever scientists and researchers figure something out soon.
AJ
By the mid-afternoon, Sammi was lethargic and starting to get dehydrated but refused to try to get any nourishment into her body (and who could blame her?). We’ve had this happen before, and in the end one of us usually ends up taking her into Children’s Hospital and spending the night with her on an IV so she can get her fluids. This you can imagine, is not a lot of fun for anyone involved plus hospitals are depressing (the food is actually not that bad, but they have a lot of sick people there, you know?). Plus, if the last chemo was any indication, we’ll end up with enough hospital stays over the next 12 months (every time she gets a fever of over 100 she has to go in to the ER and if her counts are too low she ends up getting admitted for observation). Worse yet, we started to stress about getting the medications into her – I think it was Yogi Berra who said “100% of medicine not taken, doesn’t help” (ok, he didn’t really say that, but it’s the sort of thing he would have said if he were an oncologist not a baseball player). She obviously couldn’t take her 1 pm dose and we were quite eager to get her back on track.
So, we groveled and pleaded with her to nibble on some toast and ultimately, Safta Linda (my mother) came to the rescue with an emergency run to procure some delicious slushies. She perked up with a little sugar and by 3 pm we had our vivacious little girl back, but she was understandably apprehensive about her next dose. The Dana Farber prescribed a second anti-nausea medication which she could take on top of the one she was already on, and Zadie (my father) took one for the team by driving downtown to Children’s Hospital to pick up the Rx. I have to admit that the prospect of having to get another squirt of anything into her mouth seemed daunting, but if it would help her keep the chemo down, we were open to trying. At around 5 pm, I donned my hospital mask and gloves and opened the do-it-yourself pharma factory in our kitchen to concoct yet a different formulation (thanks Liz for all of the ideas!) – mixed with liquid grape jello this time – which she was able to get down after only minimal protests. Thankfully she held it down and was able to eat a decent supper.
Because we missed her 1 pm dose, we now need a 4th day of a middle-of-the-night medication. Whereas the other 3 nights had just been a little squirt of the first med (which she actually likes), this would be a 4 med affair, and because the doses were larger, they would require actually waking her up to get her to sit up and swallow them. To make matters worse, this round was required to be delivered on an empty stomach, so we were pretty convinced that we’d be up all night with her vomiting again even if we could get the meds into her in the first instance.
Cindy and I steeled ourselves and went into her room together to wake up our little girl. Samantha was not happy with us and proceeded to cry loud enough to wake Mikki, so we took her into our room to try to calm her down. So there we were – 1 am on a Saturday night, sitting on my bed watching Dragon Tales on TiVo, negotiating, pleading with our crying 5 year old to take her medicine. It was quite a sight to behold (she can be a stubborn little coot, especially when woken up from a sound sleep), but we ultimately prevailed and afterwards she was able to sleep uneventfully through the rest of the night. By Sunday morning, Cindy and I were emotionally and physically exhausted, and are eagerly hoping we can convince her to learn to take pills over the next 5 1/2 weeks before the next cycle begins.
The saddest thing about all of this is that if you were hanging around my house on any given day lately, you truly wouldn’t know that Samantha was sick. While the MRIs clearly show resumed tumor growth, other than a slight amount of continued right sided weakness, the patient appears outwardly very healthy. Like most 5 year olds, she has a zest for life – she has a great sense of humor, has demonstrated increasing intellectual curiosity as she immerses herself in kindergarten and loves to play. She learned to flip herself over on our backyard swing set trapeze recently, and, much to Michela’s chagrin, gets tremendous satisfaction out of being able to do something in the physical realm that her older sister has not yet mastered. We know we have no choice but to pump this toxic crap into her body to try to arrest the tumor growth, but there’s a disconnect when you’re with her that is somewhat disconcerting; it saddens us to know that as the course of chemo progresses, the medicine we’re giving her will inevitably cause her inner light to shine less brightly.
Many of you have asked us directly or indirectly recently about Samantha’s prospects. This question is somewhat complicated by the presence of a possible second tumor I mentioned several entries ago. We have since talked with several experts about this and I think the short answer is that they really don’t know what it is that they’re seeing on the scan, other than to observe that it is likely to be related in some way, is absolutely inoperable due to it’s location and appears to have been there since before her surgery two and a half years ago. This is clearly not good news, but as one expert advised, “Don’t go looking for additional problems. Focus on getting the primary tumor under control and only worry about the second mass if/when absolutely necessary.”
More broadly, in terms of relevant statistics, unfortunately there are few enough cases of what Samantha has, and enough variety in the fact pattern of the cases that do exist, that reliable outcomes data is essentially unavailable. When she was first diagnosed, we were told that this tumor type had a 10-year survival rate of approximately 80%, but a portion of those cases are kids whose tumors were totally resected upon initial surgery, virtually all of whom survive. Of the partial resection cases, a minority of the partially resected tumors never resume growth (and hence 100% of those kids also survive), although the vast majority do within 5-6 years. I haven’t pushed hard enough on the right sources yet to clarify what the data has to say about Samantha’s specific fact pattern (yup, it’s on the to do list), but I suspect an honest assessment of her prospects at this point would be substantially lower than we previously thought.
In terms of her treatment path, we always knew that current forms of chemo are not curative for this tumor type. In a way our recent setback was something we always knew would likely happen – we just hoped it wouldn’t and, if it did, hoped we’d have more time between treatments. As the doctors explain it, the goal is to use the chemo to arrest the growth of the tumor long enough for new, presumably less toxic and more effective treatment protocols to be developed (in the best case), or for her to be as old as possible before she has to undergo radiation treatment. The later path is often successful in controlling tumors like this over the longer term, but also has some horrible long term side effects (permanent IQ loss of 10-20% in some studies) as well as a 3% chance of a secondary malignant tumor for which there’s no cure (as an aside, her current TPCV protocol has a 1% chance of a secondary leukemia, for which there’s a 50% cure rate – so a 0.5% chance over the long term that this treatment leads to the worst case outcome).
Our view, largely driven by input from the team of neuro-oncologists, neurologists and neuro-surgeons we most often speak with, has always been that radiation was something we may ultimately need, but that we’d like to delay for as long as possible (3% of giving your child a medicine which leads to certain death is very scary). That said, the radiation community argues that those outcome data is, by definition, based on 10-20 year old cases, so newer methods of delivery may in fact be substantially less toxic and that getting to the tumor while it’s as small as possible (e.g., not waiting for 3, 4 or more chemo regimens to fail, with tumor resuming growth, getting bigger, doing more damage in between) is the best path to long term success. We are going in for a radiation consult at some point in the next few weeks – fortunately one of the leaders in the world in this field resides in Boston – so we’ll know more soon.
This is why the efforts we’ve launched to increase funding for research in this field is so critical to our family. Most, if not all, of the people reading this blog are supporters of Team Samantha and for that we’re deeply grateful. I’ll provide a more detailed update on exactly what we’re up to at some point soon (lots of good stories there, as you might imagine) but suffice it to say that we’re working hard to invest your capital wisely on behalf of Samantha and kids like her, while pushing as hard as we can to get targeted research launched as soon as we practically can. Here’s hoping those dedicated, clever scientists and researchers figure something out soon.
AJ
posted by Samantha J @ 11:52 PM
0 Comments:
Post a Comment
<< Home