CAPTURE: Instilling Hope Collectively

Recently, my son began another regimen of outpatient therapy through our regional rehab facility. We’re not new to this hospital but the PT assigned this time around was new to us. I have struggled over the past several years with communicating with various therapists, to explain and to have them understand what it is that my son is dealing with – a spinal cord injury as a result of transverse myelitis. I find some don’t want to be told info about a particular diagnosis, current research or prognosis and truthfully, that puts me off. A good therapist is going to want to know what is unique to your child and how they can help develop and meet the goals you have in mind. It’s important to his outcome that they understand he isn’t dealing with cerebral palsy and even though his “injury” was seven years ago, that there is still a need for continued therapy and it is beneficial. His time period for recovery hasn’t expired!

What struck me most about this therapist was that on one of our first visits, she said she had been researching transverse myelitis. It was the first time any therapist we have seen at this hospital had indicated they were that invested in my son; I was shocked and impressed! She then remarked about how very little information there was available about transverse myelitis – diagnosing, treatment, prognosis…and this was all coming from a professor of physical therapy! It was disturbing to hear her say this even though I know it is all too true. We had great conversation about transverse myelitis, the lack of information available, and the incredible opportunity that is right before us to begin to change the information that is available to all of those facing a transverse myelitis diagnosis.

I am sure you have heard of or seen the articles announcing the PCORI award for the first multi-center, innovative, pediatric transverse myelitis study, CAPTURE. If you haven’t, please take a moment, bookmark this entry to come back to and read a bit more about CAPTURE here! It’s okay, I’ll wait.

Now that you know about the study, I want to take a few moments to make sure you understand how you can help make this study successful and meaningful! We can’t accomplish what Dr. Greenberg et al. and SRNA have set forth to do without your help.

To be eligible as a volunteer for the study, a child does need to be newly diagnosed. The details for research volunteers can be found here. Yes, please take a moment to click this link and review the PDF – it’s important! Just be sure to come back to finish up with me here.

Perfect – now that you’re back, you’re wondering either how to sign-up or how this pertains to you if you or your child don’t fit the criteria for research?

First, if you are interested and meet the criteria, please, please, please, contact me via email or telephone and I will be happy to discuss the study further with you. You may also contact Tricia Plumb of UTSW, Research Coordinator for the study directly and she will be more than happy to answer your questions as well.

Second, if you aren’t newly diagnosed, you can still be effective and participatory. Share the letter we’ve written, the press release, and the flyer with your local physicians, hospitals, and therapists. It’s an opportunity to raise awareness and share your family’s story and how an innovative study may have helped your child and your family to overcome and work through transverse myelitis. Chances are too, that you may hear of newly diagnosed families simply via word of mouth before they ever hear of SRNA. It’s important that we reach families that have been recently diagnosed, not only for the study, but to offer our support. There is power and there is comfort in numbers. We don’t have to face this alone.

If your child has recently been diagnosed, please remember, I have been in your shoes. I know how raw, sensitive, frazzled, exhausted, confused and angry you are right now. You aren’t sure what to do next and participating in “research” is the last thing that is on your mind. Please call me. I get it. I can still feel myself in that hospital, tears streaming down my cheeks, unable to hold my infant son and simply feeling lost. If someone had walked in and asked me to participate in research, depending on the moment, they may have just received my blank stare and silent tears or the closest heavy object hurled at them. But as time moved on over the course of a few days in the acute care then rehab facility and I discovered that these physicians and therapists treating my son were themselves at a loss for all the questions and the future of my son, I wanted – no, I needed to make a change. If I understood that the foremost physicians in North America on pediatric transverse myelitis were going to review my son’s records and follow him for the next twelve months, AND hear from me as to what our life was like since his diagnosis, I would sign-up in a heartbeat.

A few key components I feel, as a parent and primary caregiver, are important and I want to make sure you are aware of:

There is a virtual cohort to this study. If you are interested but don’t know that travel to one of the participating centers is feasible, please know that there still is an opportunity for you to be involved virtually. Sometimes a family may want to but simply can’t get to one of the centers. Please know that we still want to discuss the possibility of participation in the virtual cohort.

This study is unique in that it is collaborative with the child or parents themselves. It is not strictly about clinicians gathering data from lab work or imaging but it is about quality of life from your perspective; how you or your child is feeling, coping, changing, and recovering through the year after the diagnosis.

When all is said and done with the study, we will have so much more information as to how the various treatment options affect the outcomes in more than just a clinical manner. We will have a foundation to build from for future research. And something really incredible; the results won’t be sequestered to a medical journal and only accessible by clinicians. With the help of SRNA, you can be sure that the knowledge and hope we glean from the study will be shared amongst our community so you may feel empowered and hopeful by the knowledge so you can be the best advocate for yourself or child.

I often wonder why my son wasn’t offered IVIG or PLEX, if the physicians knew about it, if it would have made a difference in his recovery…I wonder how the conversations with the physicians would have changed and perhaps may not have been so bleak when they discharged us…I wonder if the last seven years of therapy and specialist visits may have been more directed in the goals and treatment if I had access to information that gave me a better glimpse of what we were facing. Hopefully, one day, families won’t have to wonder so much and will feel enabled to be equal participants in their care.

~ Rebecca Whitney
1-855-380-3330 ext 5