I recorded her self-administering epinephrine.
What she did next has the power to save lives.
photo
Photo by Rebecca Gould Photography
Monday, July 27, 2015
Video of Susan Self-Administering Epineprhine
On Sunday, July 5, 2015, Susan had an anaphylactic reaction.
I recorded her self-administering epinephrine.
What she did next has the power to save lives.
I recorded her self-administering epinephrine.
What she did next has the power to save lives.
Tuesday, July 7, 2015
Semantics
A peanut is a peanut, right?
For most of Susan's life, anything peanut spelled D-A-N-G-E-R.
But now, as Susan moves from participant in clinical trial to private oral immunotherapy patient, it seems not all peanuts are the same.
There is peanut protein...and pure peanut.
On Sunday morning, before her anaphylactic reaction, Susan took what was (and had been for more than eight months), her daily peanut dose in the form of a single Reese's Peanut Butter Cup (she's been taking her dose in the form of a single Reese's Peanut Butter Cup for more than two months). Susan's dose contained the equivalent of 2000 mg of peanut protein, or about 8 1/2 peanuts.
After her anaphylactic reaction, Dr. Bajowala recommended that we decrease Susan's dose to 3000 mg of pure peanut. (That's pure peanut.)
Wait.
That sounds like an increase -- especially in this fast-paced world we live in.
In fact, even the doctor now following Susan from PRROTECT was confused. In response to my e-mail outlining Susan's anaphylactic reaction to her dose and the plan for going forward, she wrote, "You said you decreased to 3000 mg; I thought she was on 2000 mg?"
I get it.
It was confusing to me, too.
Susan's 3000 mg pure peanut dose IS a decrease.
Here's the translation:
1 peanut = approximately 500 mg of pure peanut
1 peanut = approximately 250 mg of peanut protein
So...Susan's current dose SHOULD be about 6 peanuts.
However, while anything peanut has always spelled D-A-N-G-E-R to us, it seems not all peanuts are the same.
There are peanuts, then there are giant fancy peanuts...and then there are runner peanuts.
Huh.
(I'm sure there are all sorts of other peanuts out there, and I mean no disrespect to those types of peanuts I have left off the list -- I just haven't met them yet.)
I hadn't ever really looked closely, but it seems that peanuts really do come in all shapes and sizes.
This morning, Susan's dose -- 3.0 grams according to my scale (which is really a possible range of 2995 to 3004.9 milligrams) -- consisted of 2 whole peanuts and almost all of a half of a peanut.
But...what happened to the six peanuts Susan was tolerating?
Well...they must not have been very big peanuts.
In time, according to Dr. Bajowala, we won't need to weigh Susan's dose -- she'll just count peanut halves. I trust Dr. Bajowala, but having a new and improved understanding of all the different sizes and shapes a peanut can come in has given me a new-found appreciation of my scale.
While what we are doing is similar in that Susan is continuing to do oral immunotherapy, we are in a new land...and in this new land, there is a new language of sorts.
In the end, I think it is just really all about semantics.
For most of Susan's life, anything peanut spelled D-A-N-G-E-R.
But now, as Susan moves from participant in clinical trial to private oral immunotherapy patient, it seems not all peanuts are the same.
There is peanut protein...and pure peanut.
On Sunday morning, before her anaphylactic reaction, Susan took what was (and had been for more than eight months), her daily peanut dose in the form of a single Reese's Peanut Butter Cup (she's been taking her dose in the form of a single Reese's Peanut Butter Cup for more than two months). Susan's dose contained the equivalent of 2000 mg of peanut protein, or about 8 1/2 peanuts.
After her anaphylactic reaction, Dr. Bajowala recommended that we decrease Susan's dose to 3000 mg of pure peanut. (That's pure peanut.)
Wait.
That sounds like an increase -- especially in this fast-paced world we live in.
In fact, even the doctor now following Susan from PRROTECT was confused. In response to my e-mail outlining Susan's anaphylactic reaction to her dose and the plan for going forward, she wrote, "You said you decreased to 3000 mg; I thought she was on 2000 mg?"
I get it.
It was confusing to me, too.
Susan's 3000 mg pure peanut dose IS a decrease.
Here's the translation:
1 peanut = approximately 500 mg of pure peanut
1 peanut = approximately 250 mg of peanut protein
So...Susan's current dose SHOULD be about 6 peanuts.
However, while anything peanut has always spelled D-A-N-G-E-R to us, it seems not all peanuts are the same.
There are peanuts, then there are giant fancy peanuts...and then there are runner peanuts.
Huh.
(I'm sure there are all sorts of other peanuts out there, and I mean no disrespect to those types of peanuts I have left off the list -- I just haven't met them yet.)
I hadn't ever really looked closely, but it seems that peanuts really do come in all shapes and sizes.
This morning, Susan's dose -- 3.0 grams according to my scale (which is really a possible range of 2995 to 3004.9 milligrams) -- consisted of 2 whole peanuts and almost all of a half of a peanut.
It doesn't look like much, does it?
(I keep reminding myself that there was a time when Susan experienced anaphylaxis with peanut particles floating around in the air...so while her current dose doesn't look like much, it IS progress.)
Well...they must not have been very big peanuts.
In time, according to Dr. Bajowala, we won't need to weigh Susan's dose -- she'll just count peanut halves. I trust Dr. Bajowala, but having a new and improved understanding of all the different sizes and shapes a peanut can come in has given me a new-found appreciation of my scale.
While what we are doing is similar in that Susan is continuing to do oral immunotherapy, we are in a new land...and in this new land, there is a new language of sorts.
Sunday, July 5, 2015
Confirmation
I am a worrier.
A thinker.
(As a small child, I would get up multiple times after my parents tucked me in for the night -- I always had earth shatteringly important questions that just could not wait for the morning. Now, as a working mother of three busy children, I fall into bed exhausted most nights -- too tired for such wandering of the mind...)
I'm not anxious, but, sometimes, when I make a decision -- especially a big, important decision -- I revisit the decision...turning it over in my mind, re-examining the decision, the various factors, all the angles -- wondering if the decision I have made (whatever it is) was truly the right decision.
I haven't felt that way about our decision to seek post-clinical trial care in the form of private oral immunotherapy to peanut for Susan from Dr. Sakina Bajowala.
I really, truly have not felt the need to revisit that decision -- at any point.
It was one of those decisions that came easily (well, easily once I had done my research -- reading everything I could find about oral immunotherapy and talking to all the parents, allergists, and researchers who so kindly gave me their time and wisdom).
The decision came easily because it seemed as certain as possible that with Dr. Bajowal'a guidance, we might be able to achieve our goals for Susan's long-term consumption of peanut (to continue, and, eventually...hopefully, increase her tolerance beyond what appeared to be a justbarelyandnotalways tolerance).
While reaching a decision was time consuming, once the decision was made, I never looked back.
In fact, I have been excitedly awaiting Susan's first appointment with Dr. Bajowala (tomorrow!)...
And so today, when Susan had an anaphylactic reaction to her single Reese's Peanut Butter Cup, even though I have never once second-guessed this particular decision, I found myself thinking that if I had ever felt the need for confirmation of the decision, her reaction to her dose today did it.
Susan had homemade muffins (a staple in our house, and no new ingredients), melon (one that she eats regularly -- and that she had had the previous day), yogurt (a brand and flavor she adores and eats almost daily), and milk -- from a carton she drank out of yesterday for breakfast. After breakfast, she took her Zyrtec, Omeprazole and Famotidine and then ate her single Reese's Peanut Butter Cup. She finished at about 9:15 am.
About twenty minutes later, after hanging out with me and Sophia, our cat that chose Susan as "hers" about five years ago, Susan and my younger daughter asked if they could go outside, to sit on our oversized chaise lounge and read.
When I suggested an oversized chaise lounge to our landscape architect, wanting to be sure our patio would have enough space, I know she could hardly believe that I was asking that the size and shape of our patio be configured around a piece of furniture, but I knew -- long before we even had it -- that our big green chaise lounge would be a highlight in my life -- and I was right. I love it as much this summer as I loved it the summer it was delivered...eight years ago.
Susan loves it, too.
And so do Meg, and Carl.
I wondered about sitting outside post-dose, and even voiced a concern to Susan. She hesitated, and so did I. And then, after looking out the window and realizing that the chaise lounge was in the shade, I agreed that they could go. I kept an eye on them, and the chair, and about 30 minutes later, went out to see if they wanted anything. They declined my offer of popsicles (I was surprised, because in my mind it was such a treat -- popsicles before noon! -- but it really wasn't that warm...between the shade and the breeze from the lake, so I understood).
I noticed that the sun was starting to peek onto the chair, and we agreed that we would keep track of it.
I went back inside and started to do some work.
I was shocked when Susan and Meg came in about 10 minutes later. Susan's face was bright red -- like it has been in previous reactions -- and she said her breathing felt a little "tight."
She sat down, and started pulling her EpiPen out of her purse while Meg ran upstairs to get her lovie, Ga (a chocolate brown teddy bear that she has spent all but one night of her life with since she adopted him -- paw first -- from a giant wicker basket of similar bears on Father's Day weekend when she was ten months old) and her baby blanket.
With surprise, she said "Oh, I feel better!"
I was surprised, too, so I started checking her skin and assessing for other symptoms.
(I didn't like what I saw -- that same hivey rash we have become accustomed to over the last year.)
And then, seconds later, she said, "Oh, no, I'm not really better."
As she said it, I heard the wheezy tightness that made me absolutely certain Susan was experiencing an anaphylactic reaction.
We both knew she needed epinephrine, and we didn't even discuss who would administer it.
Susan's experience in PRROTECT has given her many things -- and while I think the clinical trial will become a stepping stone on Susan's path to true freedom from peanut, the most tangible thing her experience in the clinical trial has given her at this point is experience in self-administering her epinephrine...and with that comes the absolute certainty that she KNOWS what to do.
I knew it already, but I saw it in black and white on Tuesday, when Susan completed the last survey for the clinical trial.
She reported believing that there is a very small chance she will die if she eats something she is allergic to (the survey asked about "accidental" consumption, but I think her daily dose applies) and reported a 0% chance that she will not know what the right thing to do is if she has an anaphylactic reaction. Knowledge is power, for sure.
This morning, as Susan readied herself, preparing to self-inject her epinephrine, I did something different than I usually do. I did not sit with her, assuring and encouraging her. This time, I readied the video camera on my phone. While my hands were shaking, I was absolutely determined to mirror Susan's calm.
After Susan self-administered her epinephrine last time, she decided she wanted to make some sort of video or PSA for tweens and teenagers living with food allergies for her Girl Scout Silver Award project. She wants to share her first-hand experience in administration of epinephrine with others, believing (as do I) that what she knows has the power to save lives. And so, we had agreed that if she required epinephrine again, we would try to record her self-administering her epinephrine. (Susan says she is going to hope for 5,000 views. I think she is going to be shocked by how many people want to see what she plans to offer...)
I held my phone the wrong way, and Susan is not in focus 100% of the time...and there is a bit missing when Susan pulled her arm back (out of the frame) as she prepared to self-inject...but even with all of that, it is a pretty powerful piece of video.
Susan was incredible.
She was calm, and collected...and while I am so so ready to share her video now, this is not my project...and so it is not mine to share.
But let me just say -- Susan was incredible.
The video captures Susan mentally preparing to self-inject, self-injecting, her immediate reaction and the rapid relief she felt...and then her talking just a bit about what was going on for her.
Susan in her soft PJ pants, a t-shirt and her hair is pulled back in a scraggly bun.
IT IS SO REAL.
After, Susan was shaking...from the epinephrine...and then exhausted from the Benadryl (which she took after self-administering the epinephrine).
And I was shaking...from the adrenaline...and, frankly, exhausted from...everything.
I made contact with Dr. Bajowala.
We made a plan.
Instead of reducing Susan's peanut dose to 3000 mg of peanut (approximately 6 peanuts) tomorrow, during our scheduled visit, she asked that we reduce Susan's dose for tomorrow morning.
My husband, Paul, bought peanuts.
A whole can of them, at Costco.
The can reads: "Super Extra Large Peanuts" and carries a cross-contamination warning for dairy (thankfully, so not an issue in this cheese and yogurt loving household!).
He texted: "I can't believe I am buying peanuts."
Right there with you.
We sorted out a new (and stubborn) medical scale that SHOULD have calibrated easily but never did after the pharmacist at Walgreen's refused to weigh her dose (liability) and a Facebook plea for a medical grade scale we could borrow came up empty. (Our scale measures to .00 of a gram, so there was a bit of room for error...which we addressed.)
Carl and I played with peanut "wholes" and peanut "halves" and peanut bits. We decided it was a bit like playing Tetris (a game I am decidedly good at, fortunately). We arrived at this as the proposed dose:
I sent a picture of the proposed dose by text to Dr. Bajowala, explaining the limitations of our scale and initially describing the dose as 300x (x = ?) mg of peanuts. Later, a very bright Grinnellian pointed out that actually, it "could be anywhere between 3004.9 mg and 2995 mg. Probably not significant." I replied that one never knew in peanut-eating land, to which he replied it was fortunate that we had a doctor whose advice we could rely on. With gratitude for all of the doctors who are collaborating on Susan's care, I replied, "or 4!"
Susan hung out all day, reading, watching movies, playing video games.
She was in bed, asleep for the night, before 6:00 pm.
We haven't left her alone, and won't.
Once again, the cause of Susan's reaction is not known. Maybe the sun and heat, but it really wasn't very hot, and while she DID end up in the sun, it was for a very brief period of time. I don't believe this particular adverse reaction could be related to a discrepancy in dose (Reese's Peanut Butter Cups appear to be fairly uniform), to puberty or to her fledgling cycle...and other than the fact that she got braces on Thursday, there really isn't anything new.
A dear friend said it well...after we discussed the possible causes for Susan's reaction without arriving at any real answer, I reminded her that Susan has new (as of Thursday) braces. To which she replied:
"Which is such a crazy variable but I will believe anything at this point."
Right.
Me too.
Which is why I am thankful beyond words that we are where we are in terms of a care plan going forward...
I don't think I will ever get to the point that I take an anaphylactic reaction in stride, but I honestly believe that I am more confident in Susan's ability to take care of herself now than I was eighteen months ago, before her first reaction the night of the food challenges that resulted in her being offered enrollment in the clinical trial.
I had a friend wonder aloud today why we would continue this course.
The answer is simple.
Because I want Susan to live a freer life.
And so does she.
And while her journey might be harder than most, isn't freedom worth fighting for?
A thinker.
(As a small child, I would get up multiple times after my parents tucked me in for the night -- I always had earth shatteringly important questions that just could not wait for the morning. Now, as a working mother of three busy children, I fall into bed exhausted most nights -- too tired for such wandering of the mind...)
I'm not anxious, but, sometimes, when I make a decision -- especially a big, important decision -- I revisit the decision...turning it over in my mind, re-examining the decision, the various factors, all the angles -- wondering if the decision I have made (whatever it is) was truly the right decision.
I haven't felt that way about our decision to seek post-clinical trial care in the form of private oral immunotherapy to peanut for Susan from Dr. Sakina Bajowala.
I really, truly have not felt the need to revisit that decision -- at any point.
It was one of those decisions that came easily (well, easily once I had done my research -- reading everything I could find about oral immunotherapy and talking to all the parents, allergists, and researchers who so kindly gave me their time and wisdom).
The decision came easily because it seemed as certain as possible that with Dr. Bajowal'a guidance, we might be able to achieve our goals for Susan's long-term consumption of peanut (to continue, and, eventually...hopefully, increase her tolerance beyond what appeared to be a justbarelyandnotalways tolerance).
While reaching a decision was time consuming, once the decision was made, I never looked back.
In fact, I have been excitedly awaiting Susan's first appointment with Dr. Bajowala (tomorrow!)...
And so today, when Susan had an anaphylactic reaction to her single Reese's Peanut Butter Cup, even though I have never once second-guessed this particular decision, I found myself thinking that if I had ever felt the need for confirmation of the decision, her reaction to her dose today did it.
Susan had homemade muffins (a staple in our house, and no new ingredients), melon (one that she eats regularly -- and that she had had the previous day), yogurt (a brand and flavor she adores and eats almost daily), and milk -- from a carton she drank out of yesterday for breakfast. After breakfast, she took her Zyrtec, Omeprazole and Famotidine and then ate her single Reese's Peanut Butter Cup. She finished at about 9:15 am.
About twenty minutes later, after hanging out with me and Sophia, our cat that chose Susan as "hers" about five years ago, Susan and my younger daughter asked if they could go outside, to sit on our oversized chaise lounge and read.
When I suggested an oversized chaise lounge to our landscape architect, wanting to be sure our patio would have enough space, I know she could hardly believe that I was asking that the size and shape of our patio be configured around a piece of furniture, but I knew -- long before we even had it -- that our big green chaise lounge would be a highlight in my life -- and I was right. I love it as much this summer as I loved it the summer it was delivered...eight years ago.
Susan loves it, too.
And so do Meg, and Carl.
I wondered about sitting outside post-dose, and even voiced a concern to Susan. She hesitated, and so did I. And then, after looking out the window and realizing that the chaise lounge was in the shade, I agreed that they could go. I kept an eye on them, and the chair, and about 30 minutes later, went out to see if they wanted anything. They declined my offer of popsicles (I was surprised, because in my mind it was such a treat -- popsicles before noon! -- but it really wasn't that warm...between the shade and the breeze from the lake, so I understood).
I noticed that the sun was starting to peek onto the chair, and we agreed that we would keep track of it.
I went back inside and started to do some work.
I was shocked when Susan and Meg came in about 10 minutes later. Susan's face was bright red -- like it has been in previous reactions -- and she said her breathing felt a little "tight."
She sat down, and started pulling her EpiPen out of her purse while Meg ran upstairs to get her lovie, Ga (a chocolate brown teddy bear that she has spent all but one night of her life with since she adopted him -- paw first -- from a giant wicker basket of similar bears on Father's Day weekend when she was ten months old) and her baby blanket.
With surprise, she said "Oh, I feel better!"
I was surprised, too, so I started checking her skin and assessing for other symptoms.
(I didn't like what I saw -- that same hivey rash we have become accustomed to over the last year.)
And then, seconds later, she said, "Oh, no, I'm not really better."
As she said it, I heard the wheezy tightness that made me absolutely certain Susan was experiencing an anaphylactic reaction.
We both knew she needed epinephrine, and we didn't even discuss who would administer it.
Susan's experience in PRROTECT has given her many things -- and while I think the clinical trial will become a stepping stone on Susan's path to true freedom from peanut, the most tangible thing her experience in the clinical trial has given her at this point is experience in self-administering her epinephrine...and with that comes the absolute certainty that she KNOWS what to do.
I knew it already, but I saw it in black and white on Tuesday, when Susan completed the last survey for the clinical trial.
She reported believing that there is a very small chance she will die if she eats something she is allergic to (the survey asked about "accidental" consumption, but I think her daily dose applies) and reported a 0% chance that she will not know what the right thing to do is if she has an anaphylactic reaction. Knowledge is power, for sure.
This morning, as Susan readied herself, preparing to self-inject her epinephrine, I did something different than I usually do. I did not sit with her, assuring and encouraging her. This time, I readied the video camera on my phone. While my hands were shaking, I was absolutely determined to mirror Susan's calm.
After Susan self-administered her epinephrine last time, she decided she wanted to make some sort of video or PSA for tweens and teenagers living with food allergies for her Girl Scout Silver Award project. She wants to share her first-hand experience in administration of epinephrine with others, believing (as do I) that what she knows has the power to save lives. And so, we had agreed that if she required epinephrine again, we would try to record her self-administering her epinephrine. (Susan says she is going to hope for 5,000 views. I think she is going to be shocked by how many people want to see what she plans to offer...)
I held my phone the wrong way, and Susan is not in focus 100% of the time...and there is a bit missing when Susan pulled her arm back (out of the frame) as she prepared to self-inject...but even with all of that, it is a pretty powerful piece of video.
Susan was incredible.
She was calm, and collected...and while I am so so ready to share her video now, this is not my project...and so it is not mine to share.
But let me just say -- Susan was incredible.
The video captures Susan mentally preparing to self-inject, self-injecting, her immediate reaction and the rapid relief she felt...and then her talking just a bit about what was going on for her.
Susan in her soft PJ pants, a t-shirt and her hair is pulled back in a scraggly bun.
IT IS SO REAL.
After, Susan was shaking...from the epinephrine...and then exhausted from the Benadryl (which she took after self-administering the epinephrine).
And I was shaking...from the adrenaline...and, frankly, exhausted from...everything.
I made contact with Dr. Bajowala.
We made a plan.
Instead of reducing Susan's peanut dose to 3000 mg of peanut (approximately 6 peanuts) tomorrow, during our scheduled visit, she asked that we reduce Susan's dose for tomorrow morning.
My husband, Paul, bought peanuts.
A whole can of them, at Costco.
The can reads: "Super Extra Large Peanuts" and carries a cross-contamination warning for dairy (thankfully, so not an issue in this cheese and yogurt loving household!).
He texted: "I can't believe I am buying peanuts."
Right there with you.
We sorted out a new (and stubborn) medical scale that SHOULD have calibrated easily but never did after the pharmacist at Walgreen's refused to weigh her dose (liability) and a Facebook plea for a medical grade scale we could borrow came up empty. (Our scale measures to .00 of a gram, so there was a bit of room for error...which we addressed.)
Carl and I played with peanut "wholes" and peanut "halves" and peanut bits. We decided it was a bit like playing Tetris (a game I am decidedly good at, fortunately). We arrived at this as the proposed dose:
(That's 2 whole peanuts, 1/2 of a peanut and a "peanut part. Really -- mind-bogglingly not a lot...)
I sent a picture of the proposed dose by text to Dr. Bajowala, explaining the limitations of our scale and initially describing the dose as 300x (x = ?) mg of peanuts. Later, a very bright Grinnellian pointed out that actually, it "could be anywhere between 3004.9 mg and 2995 mg. Probably not significant." I replied that one never knew in peanut-eating land, to which he replied it was fortunate that we had a doctor whose advice we could rely on. With gratitude for all of the doctors who are collaborating on Susan's care, I replied, "or 4!"
Susan hung out all day, reading, watching movies, playing video games.
She was in bed, asleep for the night, before 6:00 pm.
We haven't left her alone, and won't.
Once again, the cause of Susan's reaction is not known. Maybe the sun and heat, but it really wasn't very hot, and while she DID end up in the sun, it was for a very brief period of time. I don't believe this particular adverse reaction could be related to a discrepancy in dose (Reese's Peanut Butter Cups appear to be fairly uniform), to puberty or to her fledgling cycle...and other than the fact that she got braces on Thursday, there really isn't anything new.
A dear friend said it well...after we discussed the possible causes for Susan's reaction without arriving at any real answer, I reminded her that Susan has new (as of Thursday) braces. To which she replied:
"Which is such a crazy variable but I will believe anything at this point."
Right.
Me too.
Which is why I am thankful beyond words that we are where we are in terms of a care plan going forward...
I don't think I will ever get to the point that I take an anaphylactic reaction in stride, but I honestly believe that I am more confident in Susan's ability to take care of herself now than I was eighteen months ago, before her first reaction the night of the food challenges that resulted in her being offered enrollment in the clinical trial.
I had a friend wonder aloud today why we would continue this course.
The answer is simple.
Because I want Susan to live a freer life.
And so does she.
And while her journey might be harder than most, isn't freedom worth fighting for?
Saturday, July 4, 2015
Freedom
Over the last eighteen months, I have become somewhat active in a number of different food allergy Facebook groups. I joke that I am both an accidental blogger and an accidental "Facebooker" -- but the truth is that it is true. Two years ago, I barely knew how to sign into my Facebook account, and I followed exactly...one blog.
Today there have been several posts on the various Facebook groups regarding food allergies and freedom.
Those posts got me thinking...about Susan, about the freedom we have as Susan's parents to pursue the care we think is in her best interest...and about Susan's on-going quest for greater freedom from her peanut allergy...
In June, I wrote to the doctors running PRROTECT [Peanut Reactivity Reduced by Oral Tolerance in an Anti-IgE Clinical Trial (supported with Xolair)]: "While Susan appreciates the freedoms she is likely to have as the result of the clinical trial (she has already, for example, been to several movies in the theater and we are talking about taking a short flight), she wants greater freedom."
That's right.
Greater freedom.
And she's willing to do whatever it takes -- including eating a daily dose of peanut that her body does not always tolerate very well.
During Susan's enrollment in the clinical trial, I often had people question our decision to allow Susan to stay in the clinical trial -- especially as the number of anaphylactic reactions she experienced grew.
In a blog post in January, I wrote: "I have lost friends who do not -- simply cannot or will not -- ever understand or accept our decision to pursue treatment for Susan through a clinical trial...and I have gained a community of people who -- like me -- are searching for a safer passage for their children. (I have come to understand the value of true friends, and am beyond thankful for those in our circle who have supported us even if they may not fully understand or agree with our decision...)"
In the months since then, I have continued to be asked to defend our decisions to those who do not see it clearly themselves...and I always find myself explaining that we have allowed Susan to guide us in the decision making -- and she has aways, without fail, even immediately following an anaphylactic reaction to her dose, wanted to see this course of treatment through. I have found myself explaining that it must be more awful to live with life-threatening food allergies than I can even possibly imagine, for Susan to willingly put herself on the line (I will not say at risk, for I have come to know with certainty that one thing Susan has gained from this clinical trial is confidence...the knowledge that she absolutely knows what to do in an emergency) every single day.
And then, earlier this week, on the last day of the clinical trial, I got to see it for myself, in black and white.
[Since the clinical trial began, every so often we have been asked to complete repeat surveys regarding Susan's peanut allergy and it's effect on the overall quality of her life. Susan, my husband, and I each complete our own, independently. Once, I "oversaw" some of Susan's answers, and as I wrote in January, I felt terrible about the fact that I accidentally saw Susan's completed survey...and even worse about what I accidentally learned. "My strong, kind, compassionate and brave Susan is saddened and [very] troubled every time she is different, left out...restricted...limited. And because she is the kind of person she is, she hides it."]
During our last clinical trial visit, we were asked to complete the same survey -- for the last time. This time, I asked for -- and received -- Susan's permission to look at her answers. I was prepared to let her look at mine if she asked, but...she didn't. I put my social worker hat on and talked about it with her as I looked at it...and with her permission, I photographed it, knowing that some day, I would write about it in its entirety.
Toward the bottom of the second page of the three-page survey, I saw -- in a single question -- the reason behind Susan's determination to fight her on-going personal war against peanuts. On a 6-point scale, with 6 being the worst, Susan reported a 5 ("very") in response to how disappointed she is that she has a peanut allergy.
I can say with confidence that our country's freedom came as the result of leaders with vision, commitment and determination fighting a series of long, hard and (I am sure) sometimes frightening battles. Freedom did not come easily for our country, and freedom from Susan's peanut allergy is clearly not going to come easily to her. But that does not mean it is not worth the fight.
Susan does not have the freedoms most of us living in this country have -- she cannot sit where she wants in the school lunchroom, she cannot just go out to eat, she cannot make spur of the moment plans, until recently she NEVER went to the movies, she cannot...live without thinking about countless things: the risk of exposure to peanut, what she will eat when, and whether or not she is making safe choices. We do not fly (an emergency landing after Susan experienced anaphylaxis from airborne exposure to peanut permanently "grounded" Susan), and we rarely travel -- and when we do, it is with countless extra precautions, special cleaning requests, a pre-determined list of very safe restaurants (Chipotle and Qdoba top the list)...and a cooler of food. Susan cannot go anywhere without emergency medication -- which she carries in her purse...and which she wears at all times...even in our own home.
Today, I am thankful we live in a country where we, as Susan's parents, have the freedom to seek the treatment we believe is in her best interest.
And, today, as I sit here writing this, I truly believe that some day, Susan will have her own personal "Independence Day." I am confident that what it takes to achieve such independence makes the victory all that much sweeter, and I am committed to standing by Susan, supporting her however I can, as she continues to fight her own personal war against peanuts...moving from clinical trial to private OIT (oral immunotherapy).
Susan's journey toward freedom from her peanut allergy has not been fast, nor has it been easy. But, isn't anything this potentially life-changing worth fighting for?
Today there have been several posts on the various Facebook groups regarding food allergies and freedom.
Those posts got me thinking...about Susan, about the freedom we have as Susan's parents to pursue the care we think is in her best interest...and about Susan's on-going quest for greater freedom from her peanut allergy...
In June, I wrote to the doctors running PRROTECT [Peanut Reactivity Reduced by Oral Tolerance in an Anti-IgE Clinical Trial (supported with Xolair)]: "While Susan appreciates the freedoms she is likely to have as the result of the clinical trial (she has already, for example, been to several movies in the theater and we are talking about taking a short flight), she wants greater freedom."
That's right.
Greater freedom.
And she's willing to do whatever it takes -- including eating a daily dose of peanut that her body does not always tolerate very well.
During Susan's enrollment in the clinical trial, I often had people question our decision to allow Susan to stay in the clinical trial -- especially as the number of anaphylactic reactions she experienced grew.
In a blog post in January, I wrote: "I have lost friends who do not -- simply cannot or will not -- ever understand or accept our decision to pursue treatment for Susan through a clinical trial...and I have gained a community of people who -- like me -- are searching for a safer passage for their children. (I have come to understand the value of true friends, and am beyond thankful for those in our circle who have supported us even if they may not fully understand or agree with our decision...)"
In the months since then, I have continued to be asked to defend our decisions to those who do not see it clearly themselves...and I always find myself explaining that we have allowed Susan to guide us in the decision making -- and she has aways, without fail, even immediately following an anaphylactic reaction to her dose, wanted to see this course of treatment through. I have found myself explaining that it must be more awful to live with life-threatening food allergies than I can even possibly imagine, for Susan to willingly put herself on the line (I will not say at risk, for I have come to know with certainty that one thing Susan has gained from this clinical trial is confidence...the knowledge that she absolutely knows what to do in an emergency) every single day.
And then, earlier this week, on the last day of the clinical trial, I got to see it for myself, in black and white.
[Since the clinical trial began, every so often we have been asked to complete repeat surveys regarding Susan's peanut allergy and it's effect on the overall quality of her life. Susan, my husband, and I each complete our own, independently. Once, I "oversaw" some of Susan's answers, and as I wrote in January, I felt terrible about the fact that I accidentally saw Susan's completed survey...and even worse about what I accidentally learned. "My strong, kind, compassionate and brave Susan is saddened and [very] troubled every time she is different, left out...restricted...limited. And because she is the kind of person she is, she hides it."]
During our last clinical trial visit, we were asked to complete the same survey -- for the last time. This time, I asked for -- and received -- Susan's permission to look at her answers. I was prepared to let her look at mine if she asked, but...she didn't. I put my social worker hat on and talked about it with her as I looked at it...and with her permission, I photographed it, knowing that some day, I would write about it in its entirety.
Toward the bottom of the second page of the three-page survey, I saw -- in a single question -- the reason behind Susan's determination to fight her on-going personal war against peanuts. On a 6-point scale, with 6 being the worst, Susan reported a 5 ("very") in response to how disappointed she is that she has a peanut allergy.
I can say with confidence that our country's freedom came as the result of leaders with vision, commitment and determination fighting a series of long, hard and (I am sure) sometimes frightening battles. Freedom did not come easily for our country, and freedom from Susan's peanut allergy is clearly not going to come easily to her. But that does not mean it is not worth the fight.
Susan does not have the freedoms most of us living in this country have -- she cannot sit where she wants in the school lunchroom, she cannot just go out to eat, she cannot make spur of the moment plans, until recently she NEVER went to the movies, she cannot...live without thinking about countless things: the risk of exposure to peanut, what she will eat when, and whether or not she is making safe choices. We do not fly (an emergency landing after Susan experienced anaphylaxis from airborne exposure to peanut permanently "grounded" Susan), and we rarely travel -- and when we do, it is with countless extra precautions, special cleaning requests, a pre-determined list of very safe restaurants (Chipotle and Qdoba top the list)...and a cooler of food. Susan cannot go anywhere without emergency medication -- which she carries in her purse...and which she wears at all times...even in our own home.
Today, I am thankful we live in a country where we, as Susan's parents, have the freedom to seek the treatment we believe is in her best interest.
And, today, as I sit here writing this, I truly believe that some day, Susan will have her own personal "Independence Day." I am confident that what it takes to achieve such independence makes the victory all that much sweeter, and I am committed to standing by Susan, supporting her however I can, as she continues to fight her own personal war against peanuts...moving from clinical trial to private OIT (oral immunotherapy).
Susan's journey toward freedom from her peanut allergy has not been fast, nor has it been easy. But, isn't anything this potentially life-changing worth fighting for?
Thursday, July 2, 2015
What I Wrote (or My Missive)
Dear Dr. P., Dr. M., Dr. R., & Dr. Bajowala,
We are writing to you because we are hoping you will agree to something we know is highly unusual. We would like one of the doctors from PRROTECT to co-follow Susan during her post-clinical trial care with Dr. Bajowala. I raised this concept previously, but wanted to write directly to explain why it is important to us.
While our most compelling reasons for wanting Susan to be co-followed by one of the doctors from PRROTECT and Dr. Bajowala once the clinical trial is over do not pertain directly to her, we do believe it would be in Susan’s best interest – as a patient and as a child. Continuity of care and maintenance of the relationships Susan developed with doctors during the clinical trial is important for Susan, as she has consistently demonstrated a strong commitment to research in the food allergy field. If she is co-followed, Susan will experience that same commitment from the doctors who have overseen the clinical trial since the beginning while undergoing the more specialized treatment options we are hoping Dr. Bajowala can offer. As Susan’s mother, I feel strongly that it is important that she feels supported in her post-clinical trial care plan, even if it is unusual.
In the past eighteen months, I have come to understand that there is a long-standing history of subtle (or maybe, in some cases, not-so-subtle) tension between pediatric allergists in the field of food allergy research/clinical trials and pediatric allergists offering treatment for food allergies in private practice. I have also learned there are many people within the food allergy community who believe there is only one “right” way to address the growing food allergy crisis. Susan’s experience in the clinical trial over the last eighteen months has underscored what we already believed to be true: the “new” real world allergy patient is unique. Every patient needs something different, and for many of those patients, a truly meaningful, quality-of-life-improving treatment is only likely to be achieved with the wisdom of more than one doctor.
If Dr. Bajowala and a doctor from PRROTECT work together to treat Susan once she finishes the clinical trial, it will send a powerful message to the food allergy community that ultimately the “food allergy cure” is not the same for every patient. While I am an accidental blogger, I have come to understand the importance of sharing Susan’s story, as people everywhere need to understand the realities of these early food-allergy treatment efforts. Many people in the food allergy community have followed Susan’s journey, and are waiting to see what happens next. Working together, we could become an incredible example.
Working together to find the very best treatment approach for Susan would be a significant and remarkable leadership step, as co-following Susan would demonstrate the possibility of forging a very important relationship between those who do research and those who implement in practice the research that has been done. We also believe that for those parents who hesitate to allow their child to participate in a clinical trial because they worry about post-clinical trial care, demonstrating clearly this type of post-clinical trial commitment is very important, and feel that it might make participation in clinical trials more appealing. We also believe that if both doctors work together, the formation of such a treatment team for Susan would directly challenge the belief held by some parents of children with food allergies that researchers are not invested in the long-term well-being of their subjects. (While I do not believe this to be true, I have heard it often enough to know there is a significant percentage of the population that does).
In addition to the benefits Susan would derive from being co-followed, and the benefits to the food allergy community as a whole, the doctor from PRROTECT and Dr. Bajowala would likely derive benefits for their own practices. As a social worker, I firmly believe that I can always learn from other skilled clinicians, and I believe the same is true in the medical field. We are confident that if you agree to work together, and to co-follow Susan, you will both benefit from exchange of information you can use to inform your own practices.
We think everyone involved will agree that Susan did not respond to the treatment provided in the clinical trial as anticipated. While there are a number of theories as to why Susan did not respond as anticipated, we do not yet understand why she did not achieve the desired tolerance of peanut protein. We believe that under Dr. Bajowala’s care, with treatment tailored specifically to Susan, we are likely to gain a better understanding of why Susan struggled to achieve the desired tolerance of peanut protein. While we know Susan falls outside the “norm” in terms of her response to the treatment provided in the clinical trial, we are increasingly certain that Susan is not the only child who has not responded as expected in a clinical trial. Children like Susan, who do not respond as anticipated are of tremendous concern for us, for the key to their food allergy treatment is clearly not yet fully understood. We are hopeful that Susan’s response to an individually tailored treatment plan with Dr. Bajowala will provide insights that will be beneficial in the treatment of other children like her, and we expect that treatment implications generalizable to others like Susan will emerge.
We see the unexpected week in which Susan is still in the clinical trial as an opportunity to work out whatever details we need to in order for this to work for everyone, including a communication plan and method for sharing of medical records. When we met with Dr. Bajowala in early June, she was already somewhat familiar with Susan’s experiences in the clinical trial. Dr. Bajowala also reviewed Susan’s course in the clinical trial with us in great detail. She was highly complimentary of the PRROTECT doctors’ efforts to keep Susan in the clinical trial by addressing symptoms during Susan’s early dosing with medication. She noted how committed everyone was to Susan despite Susan’s difficulties during the clinical trial, and Dr. Bajowala agreed with the concern we think we all share, which is that Susan does not consistently and reliably tolerate her daily peanut dose.
While I invite you to talk with Dr. Bajowala directly (and I will sign whatever release or consent needed), I feel that I can accurately summarize her initial treatment plan. She recommended reducing Susan’s daily peanut dose, adding probiotics and Vitamin D and slowly weaning Susan off of the Omeprazole and then the Famotidine. Dr. Bajowala expressed her belief that with time, Susan could increase her daily peanut dose, but we agreed to address increased peanut dosing once we see how Susan does with the initial treatment plan. I believe that a reduction in Susan’s daily peanut dose is a recommendation everyone will be comfortable with.
Once Susan, Paul and I met with Dr. Bajowala, our decision to ask Dr. Bajowala to treat Susan after the clinical trial was easy, because she has extensive experience with oral immunotherapy and she had some concrete ideas about how to improve Susan’s tolerance of her daily peanut dose. While the best choice for Susan was clear, it was a hard decision to make, because we do not want to lose our relationship with the doctors from PRROTECT, and we never want anyone to feel that we think treatment in a private practice setting is preferable to participation in a clinical trial. While the best course for Susan was clear, concerns about how our decision would be viewed by others – and about the message it might send to the food allergy community – gave us pause. When I explained to Susan yesterday that I intended to write this letter, asking Dr. Bajowala and a doctor from PRROTECT to co-follow her, she was really pleased. I asked her what I should say, and she summed it up well: “I think this would be a great learning opportunity for everyone.”
We think we understand the significance of what we are asking, and we thank you for your consideration of our request. Should you agree to work together, we promise to do all that we can to make the collaboration easy, and if for some reason co-following Susan does not work, we will chose a single doctor promptly. We are deeply hopeful that we can find a way to make it work for both Dr. Bajowala and one of the PRROTECT doctors to co-follow Susan. While we know our request is unusual, we believe we all want the same thing – fewer children living with the risks and limitations imposed by food allergies. Thank you so much for all you have done already – and for all we hope you will be able to do—for Susan, and for countless others like her.
Sincerely,
Caryn, Paul & Susan
Tuesday, June 30, 2015
The True Meaning of Graduation
What is supposed to be Susan's last clinical trial appointment is in a few hours.
I slept poorly last night, largely due, I am sure, to the new information that was swirling around in my mind.
The clinical trial coordinator called me late yesterday afternoon. She was calling to check to see how Susan had been tolerating her daily peanut dose since we started holding her Zyrtec (her last dose was early Thursday morning), and to see if we had any questions about the upcoming visit.
She was pleased (and pleasantly surprised, just a little, I think), to hear that Susan had been tolerating her dose well. (When I reported that, it was before Susan took her shower...and before the return of the light, hivey rash we have become familiar with over the last year.)
I took the opportunity to ask some questions about Susan's post-clinical trial care plan -- planning I am certain I have complicated in announcing our plan to seek private OIT treatment for Susan with Dr. Sakina Bajowala coupled with the request that one of the PRROTECT doctors co-follow Susan once she is discharged from the clinical trial.
As an aside, let me say that I think maybe, just maybe, this is where the idea of making meaning out of the senseless things that happen in this world comes in, for I know asking that a doctor from PRROTECT co-follow Susan with Dr. Bajowala could only be good...for Susan, for research, for anyone and everyone hoping for truly life-changing treatments for those living with food allergies. And yet, I also know that in asking for this, we are making a highly unusual request. I wrote a missive on this topic last Thursday to all of the doctors involved...and when (and if) appropriate, I will share it.
Basically, I explained why it was important to have our (peanut butter) cake and eat it, too.
In response to my missive, I learned that there is likely to be a 5-year follow-up study -- different from the one that did not get funded (Susan would not have qualified for that one, for all subjects had to achieve tolerance of 4000 mg of peanut). While it was really disappointing to us from a greater-good perspective that the original follow-up study was not funded, the one that has been proposed is likely to work out better for Susan.
There is far, far more that I do not know than what I do know.
And...
While at this point there are far, far more questions than answers, it seems like we just might...maybe, actually get to have our (peanut butter) cake and eat it, too.
While the protocol for the follow-up study is still being finalized, and they need IRB (Institutional Review Board) approval, the clinical trial coordinator was able to provide me with an overview.
In some ways, the follow-up study, which will consist of a single visit each year, will be significantly more flexible than the clinical trial. The clinical trial coordinator explained that in the follow-up study, there is likely to be more flexibility, allowing for the occasional skipped dose and fewer post-dosing activity restrictions. Since Susan's goal is to pursue greater tolerance of peanut, skipping of doses is irrelevant to us, and given that her tolerance of her daily dose is not reliable, I cannot see decreasing her activity restriction.
I did have one pressing question...the single issue that I knew might be a deal-breaker for Susan.
The question was this: "What is the plan in terms of dietary restrictions?" The clinical trial coordinator was not sure, but she was able to tell me that...at least as of right now...the discharge instructions remain the same as they have been during the course of the clinical trial: NO NEW FOODS.
I pressed her, knowing that while Susan has never been in this for the ice cream or bakery treat, she has (honestly, we all have) been looking forward to greater freedom when it comes to eating out.
The clinical trial coordinator acknowledged that one of the goals of the clinical trial is to afford subjects greater freedom when it comes to doing things like eating out, and trying new foods...but, she was unable to provide a clear answer on the question of dietary restrictions.
And so I asked more directly:
"Will subjects in the follow-up study be asked to adhere to the no new foods restriction that they have been following during PRROTECT?"
The clinical trial coordinator did not know, and while I appreciated her honesty, I was also stunned that this piece remains uncertain.
I had a few hours to process the information I learned during my conversation with the clinical trial coordinator before I saw Susan, who spent the day at the rink. I am glad I had some time to process what I had learned, for I was able to present what I did know clearly, and definitively...even though much of what I was presenting to Susan was, in fact, uncertain.
I hesitated when I got to the piece about the dietary restrictions...(knowing full well that I still had a group of Susan's friends cued up to surprise her at Baskin Robbins tonight, thinking that I should probably call the outing off...yet waiting, wanting to hear that these restrictions must remain in place directly from the doctor). I explained to Susan that, according to the clinical trial coordinator, at least as of right now (and for an indeterminate amount of time going forward), she is likely to have to observe the "no new foods restriction."
Susan took it all in, no questions.
And then she said, "I can do that. I want to do the follow-up study."
I was simultaneously thrilled, for I believe Susan's choice is right when it comes to the science of things...
And taken aback...
For what if she is asked to observe the "no new foods" restriction for the duration of the follow-up study? (I don't know if she will be, but I also do not know that she will not be...)
She will be a SENIOR in HIGH SCHOOL in five years.
Unfathomable, really -- to imagine the rest of Susan's childhood in a clinical trial follow-up...still living with her current dietary restrictions.
And so I asked some questions -- mostly wanting to be sure Susan understood what she was saying, and reminding her that, since the follow-up study protocol is not yet complete, she has some time to think about it (we will not be presented with consents today because they are not yet ready).
And yet, Susan remained clear. She wants to do the follow-up study. And she doesn't care what that means in terms of restrictions, "Because it is important, Mom."
And besides, she added..."It isn't any different than what we already do."
My heart catches and my breath hitches when I think about what continuing to follow the "no new foods" dietary restriction means...for Susan, for our family.
I feel conflicted (even after a night of tossing and turning) about Susan's clinical trial graduation gift -- a card tucked into an envelope with a host of $5 gift cards for ice cream and baked goods...and candies we have only ever looked at -- Snow Caps (my childhood favorite) and the new Hershey's chocolate covered caramels...
What do I do with that gift?
Give it?
Hold it?
Disassemble it, using the gift cards on Susan's siblings when she is not present?
A long night later, I still have not decided.
I am going to take Susan's gift with us when we head downtown to Ann & Robert H. Lurie Children's Hospital later today. I think I am going to leave it in the car...for I am not sure what I am going to do with it.
I am thankful I also tucked a bracelet into that gift bag...one with meaning, for no matter what happens, I can give her the bracelet.
Hours later, I haven't figured out how I feel about where we are now. (Well, some things I know...I am beyond thankful that there is likely to be a follow-up study...which I think is important for Susan, for the other children who are finishing PRROTECT at Ann & Robert H. Lurie Children's Hospital...and for the future of food allergy research and treatment.)
But more than anything...
This is where I step back and marvel at Susan.
For it is clear to me that, at least in her case, if she enrolls in the follow-up study, it will not be about Susan. Enrollment in the follow-up study will be all about the greater good.
And incredibly, Susan wants to participate in the follow-up study -- even with the uncertainties about dietary restriction...even if, as I put it, worst case, she has to follow the "no new foods" restriction for the next five years.
"Because it is important, Mom."
And so, on the morning of Susan's graduation from the clinical trial, I am struck by the fact that her future is as uncertain as many graduates' futures are on their graduation day. Uncertain as the future is however, I am certain Susan has grown from her experiences, and that she is in a better place now than she was eighteen months ago.
I slept poorly last night, largely due, I am sure, to the new information that was swirling around in my mind.
The clinical trial coordinator called me late yesterday afternoon. She was calling to check to see how Susan had been tolerating her daily peanut dose since we started holding her Zyrtec (her last dose was early Thursday morning), and to see if we had any questions about the upcoming visit.
She was pleased (and pleasantly surprised, just a little, I think), to hear that Susan had been tolerating her dose well. (When I reported that, it was before Susan took her shower...and before the return of the light, hivey rash we have become familiar with over the last year.)
I took the opportunity to ask some questions about Susan's post-clinical trial care plan -- planning I am certain I have complicated in announcing our plan to seek private OIT treatment for Susan with Dr. Sakina Bajowala coupled with the request that one of the PRROTECT doctors co-follow Susan once she is discharged from the clinical trial.
As an aside, let me say that I think maybe, just maybe, this is where the idea of making meaning out of the senseless things that happen in this world comes in, for I know asking that a doctor from PRROTECT co-follow Susan with Dr. Bajowala could only be good...for Susan, for research, for anyone and everyone hoping for truly life-changing treatments for those living with food allergies. And yet, I also know that in asking for this, we are making a highly unusual request. I wrote a missive on this topic last Thursday to all of the doctors involved...and when (and if) appropriate, I will share it.
Basically, I explained why it was important to have our (peanut butter) cake and eat it, too.
In response to my missive, I learned that there is likely to be a 5-year follow-up study -- different from the one that did not get funded (Susan would not have qualified for that one, for all subjects had to achieve tolerance of 4000 mg of peanut). While it was really disappointing to us from a greater-good perspective that the original follow-up study was not funded, the one that has been proposed is likely to work out better for Susan.
There is far, far more that I do not know than what I do know.
And...
While at this point there are far, far more questions than answers, it seems like we just might...maybe, actually get to have our (peanut butter) cake and eat it, too.
While the protocol for the follow-up study is still being finalized, and they need IRB (Institutional Review Board) approval, the clinical trial coordinator was able to provide me with an overview.
In some ways, the follow-up study, which will consist of a single visit each year, will be significantly more flexible than the clinical trial. The clinical trial coordinator explained that in the follow-up study, there is likely to be more flexibility, allowing for the occasional skipped dose and fewer post-dosing activity restrictions. Since Susan's goal is to pursue greater tolerance of peanut, skipping of doses is irrelevant to us, and given that her tolerance of her daily dose is not reliable, I cannot see decreasing her activity restriction.
I did have one pressing question...the single issue that I knew might be a deal-breaker for Susan.
The question was this: "What is the plan in terms of dietary restrictions?" The clinical trial coordinator was not sure, but she was able to tell me that...at least as of right now...the discharge instructions remain the same as they have been during the course of the clinical trial: NO NEW FOODS.
I pressed her, knowing that while Susan has never been in this for the ice cream or bakery treat, she has (honestly, we all have) been looking forward to greater freedom when it comes to eating out.
The clinical trial coordinator acknowledged that one of the goals of the clinical trial is to afford subjects greater freedom when it comes to doing things like eating out, and trying new foods...but, she was unable to provide a clear answer on the question of dietary restrictions.
And so I asked more directly:
"Will subjects in the follow-up study be asked to adhere to the no new foods restriction that they have been following during PRROTECT?"
The clinical trial coordinator did not know, and while I appreciated her honesty, I was also stunned that this piece remains uncertain.
I had a few hours to process the information I learned during my conversation with the clinical trial coordinator before I saw Susan, who spent the day at the rink. I am glad I had some time to process what I had learned, for I was able to present what I did know clearly, and definitively...even though much of what I was presenting to Susan was, in fact, uncertain.
I hesitated when I got to the piece about the dietary restrictions...(knowing full well that I still had a group of Susan's friends cued up to surprise her at Baskin Robbins tonight, thinking that I should probably call the outing off...yet waiting, wanting to hear that these restrictions must remain in place directly from the doctor). I explained to Susan that, according to the clinical trial coordinator, at least as of right now (and for an indeterminate amount of time going forward), she is likely to have to observe the "no new foods restriction."
Susan took it all in, no questions.
And then she said, "I can do that. I want to do the follow-up study."
I was simultaneously thrilled, for I believe Susan's choice is right when it comes to the science of things...
And taken aback...
For what if she is asked to observe the "no new foods" restriction for the duration of the follow-up study? (I don't know if she will be, but I also do not know that she will not be...)
She will be a SENIOR in HIGH SCHOOL in five years.
Unfathomable, really -- to imagine the rest of Susan's childhood in a clinical trial follow-up...still living with her current dietary restrictions.
And so I asked some questions -- mostly wanting to be sure Susan understood what she was saying, and reminding her that, since the follow-up study protocol is not yet complete, she has some time to think about it (we will not be presented with consents today because they are not yet ready).
And yet, Susan remained clear. She wants to do the follow-up study. And she doesn't care what that means in terms of restrictions, "Because it is important, Mom."
And besides, she added..."It isn't any different than what we already do."
My heart catches and my breath hitches when I think about what continuing to follow the "no new foods" dietary restriction means...for Susan, for our family.
I feel conflicted (even after a night of tossing and turning) about Susan's clinical trial graduation gift -- a card tucked into an envelope with a host of $5 gift cards for ice cream and baked goods...and candies we have only ever looked at -- Snow Caps (my childhood favorite) and the new Hershey's chocolate covered caramels...
What do I do with that gift?
Give it?
Hold it?
Disassemble it, using the gift cards on Susan's siblings when she is not present?
A long night later, I still have not decided.
I am going to take Susan's gift with us when we head downtown to Ann & Robert H. Lurie Children's Hospital later today. I think I am going to leave it in the car...for I am not sure what I am going to do with it.
I am thankful I also tucked a bracelet into that gift bag...one with meaning, for no matter what happens, I can give her the bracelet.
Hours later, I haven't figured out how I feel about where we are now. (Well, some things I know...I am beyond thankful that there is likely to be a follow-up study...which I think is important for Susan, for the other children who are finishing PRROTECT at Ann & Robert H. Lurie Children's Hospital...and for the future of food allergy research and treatment.)
But more than anything...
This is where I step back and marvel at Susan.
For it is clear to me that, at least in her case, if she enrolls in the follow-up study, it will not be about Susan. Enrollment in the follow-up study will be all about the greater good.
And incredibly, Susan wants to participate in the follow-up study -- even with the uncertainties about dietary restriction...even if, as I put it, worst case, she has to follow the "no new foods" restriction for the next five years.
"Because it is important, Mom."
And so, on the morning of Susan's graduation from the clinical trial, I am struck by the fact that her future is as uncertain as many graduates' futures are on their graduation day. Uncertain as the future is however, I am certain Susan has grown from her experiences, and that she is in a better place now than she was eighteen months ago.
Wednesday, June 24, 2015
Blogged Too Soon
I have always struggled with the idea that "everything happens for a reason" -- because what about those truly horrible things that defy reason? Children with cancer? Acts of terrorism...the unthinkable acts of violence my clients endured as children?
Then one day, a very wise man (who just happens to be married to my very dear, wise and insightful friend) said that (and I'm not quoting him, as I am sure he was more eloquent than I am about to be) it is up to us to make meaning out of the senseless things that happen in this world.
This idea resonated within me...and I have recalled his words often.
Today, when Susan and I set out for the city, I had her peanut dosing logs and her graduation card and gift with me. We also had a token of appreciation for the clinical trial staff and those who work in the Clinical Research Unit (CRU).
We dropped my car off for service, picked up a loaner and even though I pulled away from my mechanic's shop later than I had planned, we were making good time. Fears of being late slipped away, and I got lost in my own thoughts while Susan texted some of her early-riser friends. I noticed the northbound traffic (headed in the opposite direction) was barely moving, and I offered up a moment of thanks that that's not the direction we were going.
And then my phone rang -- and I recognized instantly that the caller was calling from Ann & Robert H. Lurie Children's Hospital. Hmmm. Since I was in a loaner car, my phone was not coupled with my car's hands-free system and in the seconds while I fumbled to answer the call, I wondered...finally deciding that it was a reminder call for one of Susan's post-operative follow-up appointments...
Except, it wasn't.
The minute I heard the clinical trial coordinator's voice, I knew our day wasn't going to be as planned. I think I heard the apology in her tone.
She explained -- she had forgotten to have us hold Susan's Zyrtec, and since the final day of the clinical trial required skin testing (which I either did not know or had completely forgotten), we had one of two choices -- go and do the physical examination, breathing tests, blood draw and return the following week for the skin testing or simply reschedule the entire appointment.
I explained the situation to Susan, and offered Susan the two options (thinking -- "control, give her control") and couldn't help but agree with her choice -- reschedule for next week.
At the next exit, I pulled off the highway, and over -- pausing as the world of early-morning commuters swirled around me. I checked my calendar and confirmed that we could be there the following week (for those keeping track, "Graduation Day" is now Tuesday, June 30, 2015).
I sent a brief text canceling a surprise I had planned for later in the day...
and I fought tears of disappointment.
I feel the loss keenly, and yet I determined (even before the reality of these losses crystalized in my mind) that if it was not "Graduation Day," I was going to make it a great day.
While I sat by the side of the road, I texted my good friend, Andi, who has manicured and pedicured Susan several times during the clinical trial -- especially last summer, when Susan did not feel well. I briefly explained...and asked if she had time for an "emergency" pedicure. She didn't -- but her friend did...
And I moved into damage control mode.
I proposed a pedicure, with book shopping before and sandal shopping after (I know, it would have been better to go sandal shopping before the pedicure, but I had to take the appointments available on short notice).
We were waiting when Half-Price Books opened...
And Susan did some serious damage to the clearance cart, where each of the four books she found were $1 or less...
This was Susan's second pedicure EVER, and she loved it!
AND...all day long she kept talking about how well the blue nail polish went with...just about everything (the shoes she was wearing, the pink polish on her fingers, the color of her bedroom)...I am so glad she is so pleased with it!
Susan's blue toenail polish does look nice -- with her pink fingernail polish, her new sandals AND the silver bracelets we have given her at key points in the clinical trial.
As we were driving toward the rink, Susan examined her freshly manicured toes and fingers and checked out her new shoes. We talked about the order in which she planned to read her new books...and Susan declared that we had filled the morning with "all of my happy and good things."
As the day wore on, the impact of Susan not graduating crystalized. I alternated between feeling a nearly crushing disappointment to reminding myself that one more week of living as we already do is...really, nearly nothing.
Except...for the losses I feel (perhaps) more keenly than Susan
I am eversothankful that Susan does not know I invited a group of her close friends to join us for ice cream at Baskin Robbins. She does not know that I scoped out the two different nearby Baskin Robbins locations and picked the one offering more flavors. She does not know that I made arrangements with the manager for her to try each and every flavor that does not contain nuts (she still has a tree nut allergy, and a mild soy allergy).
I am ever so thankful that Susan does not know that I planned for us to have dinner at Highwood Days, an event she loves that is like a giant community picnic, and a veritable "feast on foot." Each year, there are numerous vendors with interesting and unique food offerings, and Susan has only ever been able to eat pizza. I had envisioned a dinner on foot -- wandering with Susan, trying whatever looked good to her.
As the day wore on, my disappointment crystalized around the realities of what could no longer happen (at least not as planned).
I rescheduled Susan's Thursday-morning appointment to have her braces put on (we had agreed to wait until after the clinical trial to start orthodontic treatment, due to the increased risk of an open wound in the mouth, which some feel increases the risk of an adverse reaction during daily dosing).
I exchanged e-mail with the doctors overseeing the clinical trial about a road trip we intended to take this weekend. There is a significant stretch of our journey that is isolated, and our destination is remote. We revisited the wisdom of this trip, and at best, it will be...different than I envisioned. With the no-new-foods restriction, travel is exceedingly hard. I can (and will) pack food for Susan as I have always done -- I was just looking forward to greater freedom -- for her, and for me.
I contemplated our dinner reservations for Friday night (Susan's last night as an "only" before her twin siblings return home from camp), at what sounds like an incredible restaurant. We were planning to enjoy a "tasting menu" -- small portions of a number of unusual offerings. With the no-new-foods restriction still in place, I cannot see how this is still an option.
As the day wore on, something else happened, too, though -- we had the very beginning of what I hope will be important communication about Susan's treatment once she has completed the clinical trial. I have new hope that maybe, just maybe, there will be a partnership.
Intermingled with my disappointment is now hope -- and the feeling that maybe, just maybe, we can make meaning out of this disappointment.
Susan and I took a long walk with our puppies just before she went to bed.
We talked.
Susan shared her disappointment...
and we agreed that after having lived with the restrictions necessary to keep her safe given the severity of her peanut allergy for years, and the restrictions that came with the clinical trial for eighteen months, we can do this for one more week...
and we reflected on how fortunate we are that we have greater freedom to look forward to.
As the day wound down, I reflected on something my dear, wise friend wrote about Susan's clinical trial experience: "The definition of resiliency: embarking on a path, expecting one destination, ending up slightly off-course, and making a journey of it all." As difficult as the clinical trial has been at times, we have learned so much, and grown immeasurably, and I am thankful for every bit of our experience.
As I tucked Susan in, I gave her one more "happy and good thing" -- a miniature orchid.
Then one day, a very wise man (who just happens to be married to my very dear, wise and insightful friend) said that (and I'm not quoting him, as I am sure he was more eloquent than I am about to be) it is up to us to make meaning out of the senseless things that happen in this world.
This idea resonated within me...and I have recalled his words often.
Today, when Susan and I set out for the city, I had her peanut dosing logs and her graduation card and gift with me. We also had a token of appreciation for the clinical trial staff and those who work in the Clinical Research Unit (CRU).
We dropped my car off for service, picked up a loaner and even though I pulled away from my mechanic's shop later than I had planned, we were making good time. Fears of being late slipped away, and I got lost in my own thoughts while Susan texted some of her early-riser friends. I noticed the northbound traffic (headed in the opposite direction) was barely moving, and I offered up a moment of thanks that that's not the direction we were going.
And then my phone rang -- and I recognized instantly that the caller was calling from Ann & Robert H. Lurie Children's Hospital. Hmmm. Since I was in a loaner car, my phone was not coupled with my car's hands-free system and in the seconds while I fumbled to answer the call, I wondered...finally deciding that it was a reminder call for one of Susan's post-operative follow-up appointments...
Except, it wasn't.
The minute I heard the clinical trial coordinator's voice, I knew our day wasn't going to be as planned. I think I heard the apology in her tone.
She explained -- she had forgotten to have us hold Susan's Zyrtec, and since the final day of the clinical trial required skin testing (which I either did not know or had completely forgotten), we had one of two choices -- go and do the physical examination, breathing tests, blood draw and return the following week for the skin testing or simply reschedule the entire appointment.
I explained the situation to Susan, and offered Susan the two options (thinking -- "control, give her control") and couldn't help but agree with her choice -- reschedule for next week.
At the next exit, I pulled off the highway, and over -- pausing as the world of early-morning commuters swirled around me. I checked my calendar and confirmed that we could be there the following week (for those keeping track, "Graduation Day" is now Tuesday, June 30, 2015).
I sent a brief text canceling a surprise I had planned for later in the day...
and I fought tears of disappointment.
I feel the loss keenly, and yet I determined (even before the reality of these losses crystalized in my mind) that if it was not "Graduation Day," I was going to make it a great day.
And I moved into damage control mode.
I proposed a pedicure, with book shopping before and sandal shopping after (I know, it would have been better to go sandal shopping before the pedicure, but I had to take the appointments available on short notice).
We were waiting when Half-Price Books opened...
And Susan did some serious damage to the clearance cart, where each of the four books she found were $1 or less...
AND...all day long she kept talking about how well the blue nail polish went with...just about everything (the shoes she was wearing, the pink polish on her fingers, the color of her bedroom)...I am so glad she is so pleased with it!
Susan's blue toenail polish does look nice -- with her pink fingernail polish, her new sandals AND the silver bracelets we have given her at key points in the clinical trial.
As we were driving toward the rink, Susan examined her freshly manicured toes and fingers and checked out her new shoes. We talked about the order in which she planned to read her new books...and Susan declared that we had filled the morning with "all of my happy and good things."
As the day wore on, the impact of Susan not graduating crystalized. I alternated between feeling a nearly crushing disappointment to reminding myself that one more week of living as we already do is...really, nearly nothing.
Except...for the losses I feel (perhaps) more keenly than Susan
I am eversothankful that Susan does not know I invited a group of her close friends to join us for ice cream at Baskin Robbins. She does not know that I scoped out the two different nearby Baskin Robbins locations and picked the one offering more flavors. She does not know that I made arrangements with the manager for her to try each and every flavor that does not contain nuts (she still has a tree nut allergy, and a mild soy allergy).
I am ever so thankful that Susan does not know that I planned for us to have dinner at Highwood Days, an event she loves that is like a giant community picnic, and a veritable "feast on foot." Each year, there are numerous vendors with interesting and unique food offerings, and Susan has only ever been able to eat pizza. I had envisioned a dinner on foot -- wandering with Susan, trying whatever looked good to her.
As the day wore on, my disappointment crystalized around the realities of what could no longer happen (at least not as planned).
I rescheduled Susan's Thursday-morning appointment to have her braces put on (we had agreed to wait until after the clinical trial to start orthodontic treatment, due to the increased risk of an open wound in the mouth, which some feel increases the risk of an adverse reaction during daily dosing).
I exchanged e-mail with the doctors overseeing the clinical trial about a road trip we intended to take this weekend. There is a significant stretch of our journey that is isolated, and our destination is remote. We revisited the wisdom of this trip, and at best, it will be...different than I envisioned. With the no-new-foods restriction, travel is exceedingly hard. I can (and will) pack food for Susan as I have always done -- I was just looking forward to greater freedom -- for her, and for me.
I contemplated our dinner reservations for Friday night (Susan's last night as an "only" before her twin siblings return home from camp), at what sounds like an incredible restaurant. We were planning to enjoy a "tasting menu" -- small portions of a number of unusual offerings. With the no-new-foods restriction still in place, I cannot see how this is still an option.
As the day wore on, something else happened, too, though -- we had the very beginning of what I hope will be important communication about Susan's treatment once she has completed the clinical trial. I have new hope that maybe, just maybe, there will be a partnership.
Intermingled with my disappointment is now hope -- and the feeling that maybe, just maybe, we can make meaning out of this disappointment.
Susan and I took a long walk with our puppies just before she went to bed.
We talked.
Susan shared her disappointment...
and we agreed that after having lived with the restrictions necessary to keep her safe given the severity of her peanut allergy for years, and the restrictions that came with the clinical trial for eighteen months, we can do this for one more week...
and we reflected on how fortunate we are that we have greater freedom to look forward to.
As the day wound down, I reflected on something my dear, wise friend wrote about Susan's clinical trial experience: "The definition of resiliency: embarking on a path, expecting one destination, ending up slightly off-course, and making a journey of it all." As difficult as the clinical trial has been at times, we have learned so much, and grown immeasurably, and I am thankful for every bit of our experience.
As I tucked Susan in, I gave her one more "happy and good thing" -- a miniature orchid.
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