|Photo by Julie Kaplan|
A number of people have inquired about this e-mail...so, I am posting it here. We sent this to all of Susan's teachers, the administrators at her school and a number of other administrators across the district with whom we have had contact over the years. (For those of you who read all the way to the bottom, you will note that we weren't ready for widespread sharing. That is no longer the case...but, at the time that we sent this e-mail, we really weren't ready...)
January 23, 2014
Good Morning, everyone.
As you all know, our daughter, Susan Tatelli, has a very severe peanut allergy. She has had airborne and contact reactions to peanut proteins in a number of settings, including on an airplane, in a movie theater and while in a gymnastics class with a child who had eaten a peanut butter sandwich on the way to the program.
Frightened by the risks Susan faces any time she leaves our house, we have been actively and aggressively pursing treatment options since we came to understand the seriousness of her allergy. In fact, we have been on a waiting list for a clinical trial at John's Hopkins since Susan was in second grade.
Recently, an incredible thing happened. Susan was identified as a potential candidate for a Clinical Trial at Lurie Children's Hospital in Chicago. If enrolled, she will be one of 9 children in a double-blind study of a medication believed to inhibit the body's autoimmune response to allergens and will undergo desensitization to peanut through oral exposure while in this clinical trial. (It is hoped that Susan will be able to safely consume some peanut protein at the conclusion of the clinical trial, although of course we have no way of knowing what the outcome will be.) To be admitted into the clinical trial, Susan will consume microscopic amounts of peanut protein incrementally to the point of an anaphylactic reaction while in the clinic setting. She will also eventually consume a maintenance level dose of peanut protein at home on a daily basis. Over the course of the clinical trial, which could last as long as 18 months, Susan could experience anaphylactic reactions. We are hopeful that the reactions will be minimal and that they will be contained to the clinic setting, but, of course, there is no way to know for certain. Throughout the trial, Susan will continue to carry Benadryl and Epi-Pens in her purse, which she keeps with her at all times. She is also wearing a Medic-Alert bracelet, and once she has been formally enrolled in the clinical trial, emergency responders will have access to information regarding the clinical trial should they need to access her profile through Medic-Alert.
I met with all of Susan's teachers during conferences and was able to review the clinical trial with them and was thrilled that each and every one of them was supportive of Susan's willingness to undergo this clinical trial -- recognizing that not only is it likely to be beneficial for her, but that it also helps others like Susan who are awaiting a treatment. While we cannot know for certain what the experience of the clinical trial will be like, I think it is possible that it will be anxiety-producing and/or emotionally draining and I am certain that it will be -- at least at times -- physically fatiguing. If Susan were to have a severe anaphylactic reaction that was difficult to stop, she could also experience other physical side effects.
I know we have not always seen eye-to-eye with District 112 on the management of Susan's food allergies, but, we are hopeful that on this we can align. Susan will miss some school once the clinical trial begins (with a screening appointment) on Wednesday, January 29, 2014. Right now we know she will miss most of that day and two full days -- Wednesday, February 11, 2014 and Wednesday, February 18, 2014. The rest of the in-clinic days will be scheduled as we go, and we will, of course, keep both Susan's teachers and the school informed regarding her progress and her attendance. While Susan has not expressed any anxiety about the trial or concern about her ability to keep up academically, she has worried aloud that she might get "in trouble" for missing too much school. We have assured her that the district will understand, and we hope we are correct.
Please feel free to ask questions or concerns. We will do our best to answer them.
Due to the sensitive nature of this, we would like to ask that if you feel we missed someone on this distribution list, you reply to this e-mail instead of simply forwarding it along. Thank you for your understanding.