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Sixty-Four Weeks Strong

November 16, 2016

What a strange number. I am not sure how the term sixty-four weeks became the prominent timetable in our lives. A semester is sixteen weeks. A person is typically pregnant for forty weeks. Vacations are often noted as two weeks. But sixty-four weeks?

 

Honestly, the past sixty-four weeks have been a blur, and I am shocked at how quickly the time has passed. Sixty-four weeks ago, after having been kicked out of one clinical trial and dealing with those emotions (even though we ultimately helped medicine and future patients in that the protocol was changed after we were no longer able to participate), we were accepted into the second major pediatric trial for children with x-linked hypophosphatemia. For four months we traveled every two weeks to the other side of the country. Then we traveled every month. Then we traveled every two months. And today we were told that we don’t have to travel to see our medical team for another six months. Six months. I am not sure how to process this change in our lives.

 

What I am cognizant of, however, is just how much I appreciate the people who have supported us and the people we have met on this journey. And given the fact that our “official” sixty-four week target date actually falls the week of Thanksgiving, I can’t help but say thank you to everyone involved along the way. So while I promise not to do daily November giving thanks posts, I must say thank you to everyone who has made this journey possible.

 

Our family members, friends, and colleagues have gone out of their way constantly—praying for us, helping with logistics, showing understanding when we were exhausted, behind, or forgetful. From family members stepping in when we needed them to local friends to private Facebook threads, I cannot even begin to thank these people individually because they are too numerous.

 

My daughter goes to an amazing school. She has not been penalized for all of her absences, and instead they have prayed for her and provided her with everything she needs to be successful. Her teachers are exceptional, but Ms. Lisa takes it to the next level. She has loved my daughter daily for the past year and a half, and while I would love to take credit for my daughter’s love of reading, Ms. Lisa may need that particular credit. And not only did she provide a space for her to love reading, she constantly provided her with books that challenged her intellectually and emotionally. It was a trying year in many ways, but Ms. Lisa somehow managed to give my daughter strength and confidence and for that I will be forever grateful.

 

 

The picture I linked to this post is of us with Annie, a nurse on our medical team who retired this year but who has possibly given more doses of KRN-23 than any other nurse at one of the clinical trial sites nation-wide. Like most people I know in professions that involve caring for others, Annie couldn’t completely retire and is working a few days per month. So how amazing is it that for our sixty-four week visit she happened to be working? But, of course, Annie is one of many people who make our medical team special. Our doctor has been with us since San was two and a half years old. He is the rock star doctor for this disease, but, more importantly, he is the epitome of the doctor you want for your child. When your daughter decides to dress up like her doctor for an event at school, you know you’ve found the right doctor. Our research assistants, one of whom has been involved in our treatment since day one, are also amazing. They provide information, support, and strength, and I am constantly aware of just how much they do to help our families and other families like ours. And our nurses: I’ve always heard that nurses are who make the medical profession work, and this is so true. Our nurses have loved my daughter and provided her with amazing care. “San, where is your hair bow?” “Cheeky, where should we do your shot this time?” “You are the best patient, San.” They all know her by name, and she knows them. What a team we found when we began this journey!

 

Most reading this know that I am on the board of The XLH Network, Inc. But what you may not know is how much the people involved with this organization changed our lives. Previous board members helped us find our way and navigate what it meant be a family new to the rare disease world and to be an advocate. One board member taught my daughter to knit. One shared his experiences as a spontaneous XLH patient in trials when he was a child. One brings my daughter cookies, and is thus known as the cookie man. As an all-volunteer organization, we give as much time as we can to support families with XLH, but this note is about more than the work we do—it is about the personal investment each of these people have made in our family.

 

This is getting lengthy and a bit more sappy than I had intended, but I would be remiss if I did not thank the families we have met along the way. Early in our journey we met one family who has been a part of our lives ever since. We don’t get to see them often, but when we do it is always a joy. And watching my daughter develop a friendship—even though it is long distance—with this other child is precious. XLH may have brought them together, but it is only a small part of what I imagine will keep them together as friends. And just today we met a lovely family whose four-year old daughter has XLH too. On our sixty-four week visit we got to spend time with a family dealing with the same questions and concerns we were dealing with years ago. Their daughter is perfect, and I left our visit today feeling so hopeful.

 

I spent a lot of time over the past week grieving for our country. It may take me awhile to let go of some of this grief. But a colleague recently posted a meme on FB that quotes Jeffrey Wright, who mentions raising “the fiercest, smartest, toughest generation of ass-kicking women this country could possibly imagine.” We are raising two of these women, and I am so thankful for every person involved in our lives who is helping me to do so—whether they realize it or not. Sixty-four weeks strong. Happy Thanksgiving, all.

 

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