Tag Archives: neurology

Update, The Final Stretch

27 Mar

To begin, I want to say that I really appreciate everyone’s patience with my lack of posts. It’s been an extremely busy last couple of months.The last time I found the time to post was Winter Break back in December and now it’s Spring Break, which I hope speaks to how busy I’ve been.

Right now I’m away with my Grandmother, and we’re having an amazing time. Even when I’m not away and just in school I’m constantly reminded of how lucky and blessed I am. I’m blessed to have treatment that’s going very well, I’m blessed to have an amazing family, support network and education and I’m also blessed to have people following my story.

In the past couple of months my treatment has been mostly uneventful. I’ve now completed thirty-three of my forty-one treatments, which means I only have eight treatments left. I’d like to think that I’m now in the final stretch! Most of my treatments have gone very smoothly. Normally, I have my infusion of Vincristine and Carboplatin on Thursday afternoons. I normally feel pretty sick afterwards but then I’m able to bounce back and feel okay by the end of the weekend. Lucky I’m still able to go to my classes on Fridays.

One of the few “eventful” moments happened back in mid-January. I had returned from vacation with my family and was back in DC. I was in the middle of exams and studying like crazy. One morning I woke up and within an hour or so had a very strong migraine. I had just recently had an MRI and the migraine couldn’t help but make my mom and I suspicious that the pressure in my head had finally become an issue. We called the hospital and they look at the MRI. The MRI didn’t show increased swelling. Instead, they assumed that the rigorous study and particularly time spent in front of screens is what caused the migraine. My doctors then stressed the importance of letting one’s eyes rest to prevent eye strain, which is what I was going through.

The only other “eventful” moment was during my most recent set (meaning a group of four weekly infusions) when during my first infusion I “bounced back” much less effectively than expected. Normally during my first infusion after a two week break I react normally if not somewhat better than after other infusions. This was a little concerning. However, after talking with my doctors it just seemed to be a strange outlier. The following week I reacted totally normally.

In the next few weeks I have my next MRI and then I’ll be meeting with my entire team which includes the neurologist and the neuro-ophthalmologist. This means an entire day spent at the hospital. We’re hoping for good results. I’ll hopefully find time to post and fill you all in on the results.

Again, I want to thank everyone who’s following my journey. Your support and well as your patience has been incredible.

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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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