First Appointment at CNMC

1 Sep

Last Thursday was my first appointment at CNMC (Children’s National Medical Center) in Washington, DC. I was not going in for chemo, but just going in to become a part of the CNMC system and to meet the doctors. The day began at around 11:00am when my parents and I arrived at the hospital. We were scheduled to start the day by meeting with the oncology team who would discuss medical history and how the oncology process works at CNMC. Then afterwards we would meet with Dr. P, a well renowned neuro-oncologist.

When we first arrived my dad had to fill out a ton of paperwork. This was regardless of the fact that all of my medical records were sent down from CHOP. Finally after about a half hour of paperwork we were called back to begin the appointments. The appointments began with one of the oncology nurses taking my vitals so that in the future they would have a baseline to refer to and compare. Then we met with Dr. M, a neuro-oncology resident, who took down my whole story and medical history. Afterwards, he let me know that the schedule had changed a little and that Dr. P wanted to meet with my parents and I before we saw the oncology team.

Dr. M then took us downstairs to the neurology suite where Dr. P’s office was located. When Dr. P arrived he did a very brief exam. He already had the medical exam that Dr. M had done to compare. Afterwards he began talking about my treatment with my parents and I. To my surprise he quickly revealed that the combination of Vancristine and Carboplatin, the two chemotherapies I’ve been using aren’t actually the two that he normally recommends for children my age. He revealed that this combination shows very good results in young children but less so in teenagers. This came as a surprise to me because I knew from my oncologist at CHOP that Dr. P was a pioneer in this chemotherapy-cocktail. He quickly began talking about different treatments; everything from other simple chemotherapies to radiation. I quickly began freaking out because I was very content with my treatment and I was under the impression that things were going really well.

Another thing that was scary is Dr. P reviewed my two MRIs and showed us how in the second MRI there’s a flair coming out of the tumor. Apparently it’s very unlikely that the flair could’ve grown when the tumor hasn’t. It most likely came up in the second MRI because the pressure was released in my brain causing the flair to show. However, what Dr. P did say is that if in my next MRI (five weeks from now) the flair appears to have grown, he would most likely change treatments. In addition to the flair, he talked about how the MRI showed that I have an abnormality in my brain. This abnormality is what’s causing the tumor and as a result could be something that would need treatment in the future.

At this point in the meeting I was pretty terrified. I did not want to change treatments and before the appointment I wasn’t under the impression that I would have to. Everything really came as a shock. Looking back on the appointment now I think I overreacted a little. What Dr. P was explaining was that if the treatment took a turn for the worst there are still many more other options. What was so scary is that his way of describing everything wasn’t too great and as a result he gave off the impression he wanted to change treatments. Regardless of the scare the message at the end of the meeting was that we were going to stick with this treatment until we had a reason we’d have to do otherwise.

After that meeting I went back up to the oncology floor where I met with the oncology team. The majority of the discussion revolved around recapping the meeting with Dr. P. Frankly, a large portion of the meeting was spent calming myself down; this was a team effort. Along with Dr. M we met with a nurse practitioner and another neuro-oncologist. They described how the process takes place every Thursday when I come in for my treatment. Unlike CHOP the process is only scheduled to take between two and three hours from start to finish. This means it’ll be easy to do my treatment after school as then be in class the following day. Also, they talked about how when I come in for treatment I won’t just meet with one person like I did back in Philadelphia. Instead I’ll meet with all of these three doctors. The meeting concluded on good terms at around 3:30pm.

I was happy the meeting was over. It was scary to talk about so many much different courses of treatment; specially since I’ve already down fourteen rounds of treatment on one regiment. In the end the important thing to take away from the whole ordeal is that there’s no reason to change treatment and we won’t be changing treatments unless there’s a reason to do so. I look forward to working with the team at CNMC.

Thank you for following my Journey.

-Josh

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4 Responses to “First Appointment at CNMC”

  1. chasscrew September 2, 2013 at 12:31 am #

    Sending every good wish to you! Warm wishes, the Standish family

    Sent from my iPhone

  2. ksivick September 5, 2013 at 2:53 am #

    Wow, Josh, my apologies, I’ve been so busy I forgot to check back and read your blog. Seeing new Drs is always a bit intimidating but it sounds like this meeting was beyond the expected anxiety level. I thank you for sharing. I remember thinking about how healthcare professionals deliver news/updates/information to families when I was a practicing nurse. Often,we forget to see ourselves in the patient’s eyes. We are so comfortable with medical jargon and the facts that we can forget that although we are very comfortable with our plan, the patient may need a little extra time to process. Don’t ever hesitate to ask a Dr or nurse to slow down and clarify or explain a new treatment. Sometimes they need that little reminder that it can be terrifying being on the receiving end of a new treatment plan. Even though you are staying with your current treatment plan now, it’s not unusually to switch things up a bit and hit those cells with some new ammo!

    Always remember that Drs. are just people. It’s not uncommon to find brilliant and very skilled physicians that aren’t great when it comes to sensitive conversation.The point is the brilliant, skilled and experienced person is really who you need right now.

    I hope your next visit is more comfortable…keep writing and sharing, you are awesome!

    • Barb Gallagher September 25, 2013 at 9:15 pm #

      Josh,
      I am a colleague of your Dad’s at IU. You are on an amazing journey on which you will learn a lot about yourself and those who love you. Keep positive and stay strong. I wish you all the best.
      Barb Gallagher

  3. Barb Gallagher October 3, 2013 at 3:23 pm #

    HI Josh,
    Just checking in. I hope all is going well. Stay strong and positive. Enjoy the day!
    Barb Gallagher

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