I woke Friday morning feeling exhausted...and disheartened. While Susan had consistently been clear in her desire to see the clinical trial through...even after the reactions she had on Wednesday and on Thursday, our experience was certainly not what I had envisioned when we presented the opportunity to her. While we knew there was a possibility that Susan would be one of the two controls in the group of nine (if that's the case, what rotten, crummy luck)...and yet, while we KNEW the possibility existed, once we were facing the very real possibility that she had not been receiving Xolair injections, I was deeply disappointed.
As I lay in bed Thursday night, awake more than I was asleep, I wondered -- as Susan's mother, where the line between supporting Susan's choice and being her best possible parent was.
-- Did I (do I?) have a responsibility to step in and make a decision about whether or not Susan stayed (stays) in the clinical trial? (Yes, and...well, maybe no -- at least maybe no in that we have tried to raise a daughter who thinks for herself, who examines both sides of an issue, who does the right thing when possible. Far be it from me to assume that she is not able to make an appropriate choice for herself...as long as we are a part of the decision-making process.)
-- Was in my responsibility to tell Susan that I did not think it was worth the risk of continuing in the clinical trial? (WHO am I to know whether or not it is worth the risk -- it is Susan whose life is restricted...)
-- Should I work to foster regret and misgiving in her, in the hope that she would decide, of her own accord, not to continue? (While I wondered that, my heart really wasn't in the idea...that's just not how I think about things...)
-- Should I take the knowledge gleaned in my crash course on more traditional OIT (Oral Immunotherapy) and educate Susan -- in the hope of building her confidence, giving her hope, encouraging her onward? (In pondering this, I realized that, in all honesty, even though I am her mother, I have come to feel strongly that she should be the decision-maker -- at least on the subject of whether or not to continue in the clinical trial. It is HER body, after all.)
Susan woke up late -- and still tired (we matched on that account) -- and pale. I worried about how her physical condition might affect her attempt to tolerate a 15 mg dose of peanut. She HAD had exposure to peanuts for the previous two days...but, would that work in her favor...or not quite so much? Even though she vomited both days, surely SOME amount of peanut protein had been processed by her body, right? Who knew? Certainly not me, and as much as I like answers and certainty in life, I had to accept that in this at least, despite the science behind the clinical trial -- we were not likely to have a real answer.
Despite her less-than-perfect physical condition, Susan was in good spirits. She ate a good breakfast and took the Xantac. (This was one of the many changes in an admittedly unscientific approach to achieving tolerance of the 15 mg dose the Friday before a three-day weekend.) Susan got dressed and put on a pair of pretty flip flops (when her feet aren't in skates, she's happiest in flip flops -- and she loves fun ones). I wondered if maybe she was subconsciously employing one of my tactics in life -- even if you don't feel great, you can at least LOOK great.
I tried to hide the fact that I was tormented by the plan for the day. I was not at all certain that Susan would actually be able to tolerate the 15 mg dose (that's about 0.6 percent of a peanut). During the night, I had spent some time re-reading texts I had sent my husband and friends who were closely following along during Susan's food challenge on Wednesday...and...while comparing Susan's reactions during the food challenge day (where the dosing was cumulative) to a single dose was a bit like comparing an apple to a...peanut...I nevertheless felt compelled to try.
As I lay in bed Thursday night, awake more than I was asleep, I wondered -- as Susan's mother, where the line between supporting Susan's choice and being her best possible parent was.
-- Did I (do I?) have a responsibility to step in and make a decision about whether or not Susan stayed (stays) in the clinical trial? (Yes, and...well, maybe no -- at least maybe no in that we have tried to raise a daughter who thinks for herself, who examines both sides of an issue, who does the right thing when possible. Far be it from me to assume that she is not able to make an appropriate choice for herself...as long as we are a part of the decision-making process.)
-- Was in my responsibility to tell Susan that I did not think it was worth the risk of continuing in the clinical trial? (WHO am I to know whether or not it is worth the risk -- it is Susan whose life is restricted...)
-- Should I work to foster regret and misgiving in her, in the hope that she would decide, of her own accord, not to continue? (While I wondered that, my heart really wasn't in the idea...that's just not how I think about things...)
-- Should I take the knowledge gleaned in my crash course on more traditional OIT (Oral Immunotherapy) and educate Susan -- in the hope of building her confidence, giving her hope, encouraging her onward? (In pondering this, I realized that, in all honesty, even though I am her mother, I have come to feel strongly that she should be the decision-maker -- at least on the subject of whether or not to continue in the clinical trial. It is HER body, after all.)
Susan woke up late -- and still tired (we matched on that account) -- and pale. I worried about how her physical condition might affect her attempt to tolerate a 15 mg dose of peanut. She HAD had exposure to peanuts for the previous two days...but, would that work in her favor...or not quite so much? Even though she vomited both days, surely SOME amount of peanut protein had been processed by her body, right? Who knew? Certainly not me, and as much as I like answers and certainty in life, I had to accept that in this at least, despite the science behind the clinical trial -- we were not likely to have a real answer.
Despite her less-than-perfect physical condition, Susan was in good spirits. She ate a good breakfast and took the Xantac. (This was one of the many changes in an admittedly unscientific approach to achieving tolerance of the 15 mg dose the Friday before a three-day weekend.) Susan got dressed and put on a pair of pretty flip flops (when her feet aren't in skates, she's happiest in flip flops -- and she loves fun ones). I wondered if maybe she was subconsciously employing one of my tactics in life -- even if you don't feel great, you can at least LOOK great.
I tried to hide the fact that I was tormented by the plan for the day. I was not at all certain that Susan would actually be able to tolerate the 15 mg dose (that's about 0.6 percent of a peanut). During the night, I had spent some time re-reading texts I had sent my husband and friends who were closely following along during Susan's food challenge on Wednesday...and...while comparing Susan's reactions during the food challenge day (where the dosing was cumulative) to a single dose was a bit like comparing an apple to a...peanut...I nevertheless felt compelled to try.
Apple:
.5 mg dose, 1 mg dose, 2 mg dose, 4 mg dose
(at which point, Susan had begun complaining that her stomach did not feel quite right)
Peanut:
15 mg dose -- to be given today
And, while I was trying to embrace the idea of giving Susan a 15 mg dose of peanut protein, truth be told, I really didn't feel very good about it. AT ALL. Especially having done the comparison I outlined above.
We were in the car by a few minutes after 7:00 am -- wanting to be absolutely certain that we were on time for our 9:00 am appointment. I was acutely aware of the fact that the CRU was only open Friday morning (it was the start of a holiday weekend)...and I did not want us to be late...especially since we were planning for a longer-than-typical observation period.
Ga was not along for the ride, which spoke volumes about Susan's belief that today's plan would work.
Susan and I talked on the drive in to the city...about everything, and about nothing. I had thought the drive time might be a good opportunity to talk about what Susan was thinking/how she was feeling about the clinical trial. But, there really was not much to say. She was pretty certain she was in the control group, and she understood that more traditional OIT could still potentially be helpful for her. Period. Let's keep at this. End of discussion.
We arrived in the CRU promptly at 9:00 am and, even though she had been weighed and measured on the previous two days, this visit began in the same way.
And then, with little fanfare, it was time for Susan's dose -- 15 mg of peanut protein.
We were in the car by a few minutes after 7:00 am -- wanting to be absolutely certain that we were on time for our 9:00 am appointment. I was acutely aware of the fact that the CRU was only open Friday morning (it was the start of a holiday weekend)...and I did not want us to be late...especially since we were planning for a longer-than-typical observation period.
Ga was not along for the ride, which spoke volumes about Susan's belief that today's plan would work.
Susan and I talked on the drive in to the city...about everything, and about nothing. I had thought the drive time might be a good opportunity to talk about what Susan was thinking/how she was feeling about the clinical trial. But, there really was not much to say. She was pretty certain she was in the control group, and she understood that more traditional OIT could still potentially be helpful for her. Period. Let's keep at this. End of discussion.
We arrived in the CRU promptly at 9:00 am and, even though she had been weighed and measured on the previous two days, this visit began in the same way.
And then, with little fanfare, it was time for Susan's dose -- 15 mg of peanut protein.
I felt compelled to take a picture of it -- the poisonous cure.
A smaller dose, but, still -- poison is poison, right?
While I love the idea that this might work for her, that it might change her life, give her freedoms we have only dreamed of, I also hate what it might do to her along the way.
As I looked at the prescription bottle filled with peanut protein, I shivered, thinking about the glimpse into childhood leukemia I had when a friend's child battled leukemia. I was (and AM) tremendously thankful that we had a choice in this matter. We COULD walk away...
And yet, as I watched Susan calmly, confidently eat the dose -- believing without doubt this is the key to a better life for her -- I knew that I needed to support her in this, to hide my misgivings, to trust the doctors, clinical trial coordinators and myself...to give her the gift of this incredible opportunity.
We did a few things differently this time:
1) Susan pre-medicated with 10 mg of Zyrtec.
2) Susan drank 4 ounces of cold water just after taking the 15 mg dose of peanut protein.3) Susan ate a significant snack with the dose (a peanut-free granola bar from Canada that I had with me while we waited for a baked potato to come up from food services which she then rejected because the soy-free cheese left A LOT to be desired...and then Rice Krispies with milk).
We waited.
We observed.
We talked.
Susan told the doctor that she thought she was "the control." While we all recognized that we could not talk about whether or not Susan was a control in the clinical trial, Susan's recognition of the fact that she had not been able to tolerate significant peanut protein DID open the way for some important conversation...
The three doctors involved in this clinical trial had clearly been hard at work. They had reviewed the protocol. They had made special note of a single line in the protocol that stated that if a subject was not able to make reasonable, meaningful progress in his or her ability to tolerate increases in peanut protein then that subject could be transferred out of the double-blind tract of the clinical trial and into a tract in which he or she would receive open-label injections of Xolair. Oh my. Ohmyohmyohmy. Incredible, maybe. Hope before Week 19, should we need it. (SHOULD we need it -- let's NOT get ahead of ourselves...while it seems Susan is likely a part of the control, there is no true way of knowing.) That said, there are NO WORDS for how I felt when I heard that. Hope is a powerful thing.
And again, I was comforted by the tremendous care these doctors have for my daughter. I believe they will not compromise this study, but, I also believe they will do their very best to ensure my daughter's safety.
As a dear friend said, "they are treating her like a person, not just a subject in a study." And for this, I am constantly thankful.
While we waited, we noticed a slight increased in blood pressure...
And skin changes.
(I photographed them right away this time!)
But...no (significant) hives.
We agreed that there would be a longer observation period. Dr. R. was incredible and let Susan decide how much time she thought would be appropriate. I was thinking 3 hours, but, Susan wanted more. I was SO not going to get in the way of what felt right for Susan, so, I went with it. I did, however, suggest some physical activity -- nothing too intense -- just a walk...pulse ox cord and all...
Not the cafeteria...too complicated.
So, we went to the gift shop, where Susan checked out various gifts, including this "baby giraffe" chair (her skating coach calls her Baby Giraffe because she is so tall) and picked out gifts for Meg and Carl -- and a bag of Fritos for the two of us to share. (Check out those awesome flip flops!)
I was happy that Susan wanted to eat, and as I was not going to deny her anything, we shared a bigger-than-average bag of Fritos...until eventually I handed them to her and told her that she had to finish them herself, or at least make sure I did not have any more!
The gift shop is not really all that big (that's not a criticism, simply a statement of fact...) and so, after not too terribly long, we returned to the CRU. Susan finished the Fritos. She contemplated Oreos and milk, but, decided against them...
And then, after 3 and one-half hours of observation, she was ready to go. She had food on the brain (Zapatista)...and once she was ready to go, I was ready, too. Susan has always been incredibly good about listening to her body (when she does not feel well, she retreats to her room and sleeps -- allowing her body to repair itself in a way most children do not and cannot do). I am convinced it is a skill that some people have and others...do not (I fall into the later category, I am certain.)
While I am (unfortunately) confident that there is no road map for this journey we are on, I am clear on several things. I fully intend to listen to everything Susan has to say about her body...and I am going to support her efforts to ensure those needs are met.
I was so happy to be able to take Susan to Zapatista -- I know we are fortunate in that others living with food allergies do not have the same options we do -- fewer tried-and-true-and-reliably-safe places and (at least for some) AND not the resources to offer such options.
Over a bowl of incredibly good guacamole, Susan and I talked. (I forgot to photograph our guacamole before we dug in...Susan helped "stage" the little that remained.) While Susan remains certain she is in the control group and has been receiving injections of the placebo, she wants to see this through. She believes in the hope of the future, in the promise of open label injections of Xolair.
"Mom, SOMEONE has to be the control. WHY SHOULDN'T it be me." My dear, sweet Susan -- of course you see it that way. And I so, so hope you are right.
And so, we entered the holiday weekend with a home dose of 15 mg of peanut protein. That's not a lot, but, maybe it is better than nothing? Surely, certainly, it is.
<3 Praying for your sweet girl! And for you! My goodness, I don't think my heart could handle this!
ReplyDeleteThank you for sharing your journey! Susan has such a positive spirit! Good luck with the home dose of peanut protein. We are rooting for her!
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