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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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Visit with the Neuro-Ophthalmologist

20 Aug

Yesterday was my appointment with the neuro-ophthalmologist. My oncologist has been insisting that I see the neuro-ophthalmology team to follow up on the improvement in my vision since my surgery and diagnosis. Since I had my surgery back in April my double-vision has totally disappeared.  However, because it’s obviously not healthy to have double-vision my oncologist wanted to see how healthy my eyes are now.

When I arrived at the ophthalmology suite I checked in and then had to wait around forty minutes before going back to meet with the doctor. The appointment began by meeting with one of the ophthalmology fellows who had me recap my diagnosis and previous medical treatment. She did a very thorough recap of everything that was going on and put the recap in my medical records. She quickly looked in my eyes and did some simple tests before the head neuro-ophthalmologist came in. When the neuro-ophthalmologist came in he decided that because I hadn’t previously see the neuro-ophthalmology team he wanted to do a full exam. This meant that I would have to do a visual field test and then receive dilating drops so that the team could look into the back of my eyes.

I had previously done a visual field test when I was an inpatient in the ICU. My last visual field test was done when I was just hours out of neurosurgery and still experiencing very apparent double-vision. During  a visual field test a technician covers one eye and then places your head in a machine. In the machine there is one light where you focus your uncovered eye. As you focus on the light other little white dots appear throughout the machine and you click a button every time you see a dot. The test both eyes. Believe it or not this test is really hard!

After the test the technician put the dilating drops in my eyes and then sent me back to the waiting room. I went and got a snack and before I knew it I was called back to meet with the doctor. My doctor, dad, and I went over the results and looked into the back of my eyes. The doctor was shocked! Apparently when you’re diagnosed with a tumor like mine (because of it’s location) and experience double-vision you expect to see some vision loss. The doctor couldn’t find anything wrong with my eyes! When they looked into the back of my eyes they saw the equivalent of scaring around my retinal nerves, which is normal when you’ve had double-vision, but this has no effect on vision.

The team of doctors was actually really surprised. They were looking for something wrong; either vision loss or loss in depth of field. However, they couldn’t find anything wrong! This was awesome news!

The appointment took roughly two hours. It took a few hours before the dilating drops wore off. Now I’m just getting ready for chemotherapy on Thursday. One more round before a two week break!

Thank you for following my journey.

-Josh

More good news!

19 Jul

More good news today! This afternoon was the consultation with my oncologist to get a little more information on what the MRI showed. As I said before the MRI showed that the tumor has shrunken a little but more than anything it has stopped growing.

The meeting also have us more of an insight into how the rest of my brain was reacting to the tumor. When I had my very first MRI, one of the side effects of the tumor was that it was causing the fluid pools in my brain to build up. This along with the pressure the tumor, double vision, and of course the tumor, was not creating a good situation for my brain. This most recent MRI shows that the fluid pools in my head have been draining normally and that there is no longer buildup.

One of the things my oncologist did talk about is how I’ll be getting MRIs for the rest of my life! Over the next year I’ll be getting an MRI every three months. Once the treatment is over then I’ll be getting an MRI every six months for the next five years, and finally after that I’ll be getting one MRI every year for the rest of my life. Fun, right?!

In the image below you can see the tumor is the giant white growth in the middle. The fluid pools are the two black areas on each side of my brain. As you can see in the second image, they are much smaller. You can also see that the tumor is a bit smaller.

As you can see here the fluid pools have reduced and more than anything the tumor is a bit smaller!

As you can see here the fluid pools have reduced and more than anything the tumor is a bit smaller!

All in all we received a lot of good news today. I want to take another moment to thank everyone who has been following my journey and sending so much greatly appreciated support.

-Josh

Big Day Tomorrow

10 Jul

Just wanted to let everyone who is following my “journey” know that tomorrow is my big MRI. The purpose of the MRI is to see if the ten week intensive period has been working. We should get the results sometime later this week and I’ll post them as soon as I know.

-Josh