Photo by Rebecca Gould Photography

Thursday, May 15, 2014

What's NEXT? (Recent e-mail to Susan's Teachers)

Since I realized that sharing our full experience is what makes my blog most valuable to many followers, I thought I would share an e-mail I sent to Susan's teachers and the administrators at her school last night.  I took the liberty of   

Good Evening.

We are nearing the end of the injection phase of the clinical trial.  Since the trial began, Susan has been receiving regular injections of either the drug being studied (Xolair) or a placebo.

Susan's last injection appointment is tomorrow (Thursday, May 15, 2014), and, as the day is short due to the early release schedule, she will not be at school.  Please feel free to e-mail class assignments or homework to me or to Susan.

Next week, Susan has her first desensitization visit, on Wednesday, May 21st.  The hope is that she will be able to eat the equivalent of one full peanut (250 mg of peanut protein).  This is 10 times what Susan consumed at the outset of the trial, and it is possible that she will not be able to consume that much peanut protein without having a reaction.  (For those of you who are following along in detail, Susan actually only had half of a 25 mg dose before reacting during the intake food challenge, and, as some of you may recall, she had a significant delayed reaction that resulted in her self-administering her Epi-Pen late that night). The goal of the visit on Wednesday, May 21st is to determine how much peanut protein Susan can eat without having a reaction.    

Depending on how things go on Wednesday, May 21st, Susan will either come home for the evening or be admitted to Lurie Children's Hospital.  On Thursday, May 22nd, Susan will consume a single dose of peanut protein -- whatever is determined to be the highest dose she can tolerate on Wednesday.  She will do this in the clinic setting and stay for observation in order to be sure she is able to tolerate it.

Obviously, Susan will not be at school on either May 21st or May 22nd.  As I anticipate that this could be a stressful period of time, if there are any significant assignments due on Friday, May 23rd, I would appreciate it if you could assign those to Susan as soon as possible, so she can be sure to get them done on time.

Beginning on Friday, May 23rd, Susan will consume a small amount of peanut protein in our home each day.  While we are excited about this, we are all, as you might imagine, a bit uncertain about what this will be like.  We know from those who have gone before us that airborne and contact exposures will still pose a significant risk for Susan during this time frame, as her immune system will being being significantly taxed.  We also know that breakthrough reactions are relatively common and have been cautioned to expect the unexpected.  Susan remains clear in her determination that this clinical trial is tremendously important and we feel that her certainty will carry her far during this period of time.  That said, we wanted to be sure Susan's teachers knew what was happening, in case she needs extra support.

The sixth grade team has been incredible this year, and I cannot thank you enough for all that you have each personally done to support Susan.

If you have questions or concerns, please feel free to e-mail me or to call me.

Thank you.

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