Somehow, I forgot to include Travis' Denver medical and the Colorado Chapter of the Children's Tumor Foundation (CTF) in my prior post. If you would have told me one year ago that we would have gone on this journey, I would not have believed you. T had his yearly NF checkup with the Geneticist at Children's Hospital in Denver on Monday, December 14, 2009. The orthopedic PA we had been working with was able to get the ortho appointment in the morning of that day (they typically see leg length discrepancy patients on Tuesdays). Ryan has a great approach with the patients and families. It was a great help to be able to see both sets of specialists on the same day.
During that geneticist appointment last December, we talked about that Travis' left thigh is noticeably bigger than the right and the areas of "overlapping" cafe-au-lait spots. Dr. Bellus immediately suspected a plexiform neurofibroma and put the orders in for Travis to have an MRI. Since T was going to have to be under for hours (both legs, lower spine, and brain since he was out), the soonest we could get Travis in was 5 weeks. Dr. Bellus was able to talk with the radiology department and that was shortened to 2 weeks. Not having to wait on that MRI for the additional 3 weeks was great, so thankful for his help...even now almost a year later. A special thanks to Kristina and the other genetic counselors that have helped us along this journey. Kristina will be missed in the NF clinic and her new group is extremely lucky to have her as a part of their team.
Dr. Bellus called me after he talked with radiologist about Travis' initial MRI to go over the results. He spent 30 minutes on the phone with me to go over the results and what the plexiform means for Travis (and us taking care of his medical appointments). In that phone conversation, he recommended we get in touch with the Colorado Chapter of CTF. They are an amazing group of people that are a wonderful support system.
What to say about Colorado Chapter of CTF...where to begin? How do you describe a group that is so supportive and bonded by the common concerns of all facets of NF? They are an active chapter that I would be lost without their support and friendship. They provide wonderful support to families and I have met many lifetime friends through this group. While each of us may be on a different part of the journey with NF, we understand and relate the common concerns and issues that may arise at any point.
One of the greatest events I have ever been a part of was at the Women's Day held in April. They have been hosting this event each April for women somehow affected by NF: personal, family, or friend. Their outreach coordinator Jane has a real talent for supporting families from those that are just learning about NF to those that have been on this road for many years. Thanks Jane!
The same can be said for all the families I have met through this CTF chapter. The opportunities to meet other families going through the same issues/concerns and see what they are doing is a tremendous help. We are able to discuss topics with the main goal of helping each other through this journey...whether that is advice, listening, laughing, or seeing a friendly face at appointments.
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