Leigh, Kym, William, Jorryn, and Macyn … and our adventures!

Yesterday, Leigh had his liver ultrasound and another nuclear study. The liver ultrasound was to look at the spot around the right kidney/gallbladder area to rule out another tumor. The ultrasound tech told him it looked clear, but when we spoke with the clinical coordinator late yesterday afternoon, she and Dr. Pacek had not read the reports or looked at the pictures. Please say a prayer that this was all just a fluke and not another tumor!!! We would definitely take that as a form of good news!


The nuclear study he had yesterday was supposed to be repeated today, but we just got word that the images they got yesterday afternoon were clear (as in they weren’t blurry and they could see all of the structures that they needed to see), and that we don’t have to go back today! (It’s nice being able to post positive things for a change!)


This afternoon, all of the surgeons are getting together to hold Leigh’s “tumor board.” They will discuss their respective areas of expertise in regards to Leigh’s care and come up with a game plan as to how all of this should proceed. We *may* have to go back on Friday for a clinic appointment to sit with all of the surgeons (less the ENT who is only at NIH on Wednesdays), but by the end of the week, we should definitely have a clear surgical and care plan!


I asked Karen (our clinical coordinator) yesterday what kind of time frame we were looking at for Leigh’s surgeries. While she couldn’t (obviously!) give us exact dates, she was confident that the process would start sometime this month. As much as I hate the thought of him having these surgeries, I am confident that we are where we need to be, and that he is and will be receiving world-class care and treatment, and I’m anxious to put the surgeries and his recovery behind us so that we can get back to life as normal!


Comments on: "Short Week at NIH!" (4)

  1. Melanie said:

    Kym and Leigh I wish for nothing but great news and a smooth recovery. Thank you for keeping us updated and I pray that everything works out fine. You and the family are definitely in my thoughts and prayers! ❤ ` Melanie

  2. What a ride you all have been on! I found your blog through a Facebook pheo site. I just returned about a week ago from NIH where I had a brief version of the scans you all dealt with and surgery for a carotid paraganglioma. Reading your story reminds me why it is so amazing and such an honor to have been accepted into the study at NIH. I’m praying for you on the journey and will keep following your story!!!

    • Thanks, Val! I’m sure we crossed paths while at NIH. I did have the pleasure of meeting two other pheo patients while we were there; despite the difficulties and hardships that this disease presents, there is such a wonderful, caring, supporting group of people!

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