Tag Archives: MRI

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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A marathon of doctors visits at CNMC!

24 Oct

Well today was the day. Because the day turned out to be such a marathon, I’ve decided to do this post chronologically.

(9:30am) My parents and I arrived at the hospital and went straight to the oncology suite. We checked in and I was almost immediately taken back.  I’m still not sure if this is because I had a pleather of things to do and many people to see or if it was just a quiet morning. As soon as we were placed in a waiting room a nurse took all my vitals. Everything looked good. Then I was taken by another nurse to have my post accessed. Everything was running very smoothly, just one thing after another.

When I got back from having my port accessed a doctor, whom I hadn’t met before, was there to ask me a whole bunch of questions. These questions being a little more in depth than the usual infusion day. As she was doing the exam, more and more doctors started tricking in and by the time she finished the exam our little room had about ten people including the legendary, infamous, Dr. P. Business as usual, he did a few quick tests including looking back into my eyes. Then, with all the doctors ready to jump into their terminology that’s not meant to scare anyone but obviously does, I left. Even being sixteen, I’d much prefer to get the quick, simplified, sugarcoated version from my parents.

(11:00am) My parents came out of the meeting and told me we quickly had to run downstairs because we were being squeezed in to see Dr. A, a well renowned neuro-ophthalmologist. As we signed in to see the doctor my parents filled me in on the meeting. I already knew some about the MRI’s results because the doctors had called earlier in the week.

The MRI looked pretty good. The tumor has actually shrunken from the first scans and there’s an obvious change in certain parts that likely means it’s dying. The only down side was that the fluid pools that were obviously too big in my very first MRI (right before I had surgery), and had then been drained during surgery, were now starting to fill up again.

In this picture you can see the first MRI (left) from right before my surgery. In that picture the fluid pools were much too big and that's why during my surgery the surgeon opened up a place for the fluid to drain. In the MRI from back in July (right) you can see that the fluid was draining really well.

In this picture you can see the first MRI (left) from right before my surgery. In that picture the fluid pools were much too big and that’s why during my surgery the surgeon opened up a place for the fluid to drain. In the MRI from back in July (right) you can see that the fluid was draining really well.

This most recent MRI looked a little different.

This is a comparison of my MRI from July (left) and my MRI from Sunday (right). As you can see, the MRI from Sunday shows the tumor has actually shrunk (2mm) and the change in coloration shows that it's dying. However, in this image you can see how the fluid pools are starting to fill up again.

This is a comparison of my MRI from July (left) and my MRI from Sunday (right). As you can see, the MRI from Sunday shows the tumor has actually shrunk (2mm) and the change in coloration shows that it’s dying. However, in this image you can see how the fluid pools are starting to fill up again.

The news the tumor has shrunk is great! It’s not as great to hear the fluid pools are filling up again, but that does happen. There are three possible treatment options for the fluid buildup. The first is to have another procedure in which the surgeon would just make another drain like they had done in my original surgery. However, my doctor’s don’t think this is the best option because there’s always the possibility the same thing (fluid buildup) will happen again. The next option is to put in a shunt. A shunt is a little device placed on my skull, under my skin. A tube is placed in the fluid pools of my head and then it runs through the shunt and down into my stomach. The idea is to take the extra fluid and relocate it. The third option is to do nothing, and evidently this is what the team, my parents, and I chose. As of right now, there’s no reason to believe that pressure and fluid is going to continue to build. The pressure might just relive itself and there would be no reason to have a shunt. We decided that we would wait until my next MRI in another three months and than see if there’s something that needs to be done.

As this whole conversation was going on we were beginning to meet with Dr. A to get my eyes checked out. Everything was pretty routine. It started with a visual acuity test and then a visual field test. Both came back really positively. Then I met with Dr. A who looked into the back of my eyes before giving me dilating  drops.

When he came back twenty minutes later he looked into my eyes again and than I went to do some more tests. The first of those tests wasn’t even a test. It was an image to look at the retinal nerve in my eye. With the dilating drops they were able to take images that were the size of 200µm, which is equal to 0.00002 of a centimeter.

My retinal nerve. The length of this image is 0.00002 centimeters

My retinal nerve. The length of this image is 0.00002 centimeters

 

Here you can see the doctor taking the photos of my eyes and the retinal nerve.

Here you can see the doctor taking the photos of my eyes and the retinal nerve.

Dr. A thought my eyes looked great. However, there was some retinal swelling he wasn’t sure about. He said that honestly it could be nothing. Just incase, I’m going to see him again in two months.

(1:00pm) Next, we arrived back at the oncology suite where I almost immediately began my premeds and infusions. One of my favorite doctors, Dr. R, came to talk with my dad and I. Basically, he reinforced the idea that it’s important to keep an eye out for things like headaches, vomiting and fatigue because those are all signs of increased signs of pressure. The whole point of monitoring the pressure is to protect my eyes and brain but to also see if I need a shunt. He asked me to keep a journal of when I have headaches, which I’ll definitely be doing.  Dr. R also referred us to the neuro-surgery team just so that we could hear a little more from them about the logistics of the procedure and so that if something does need to be done then we have a connection.

Afterwards, I did my normal infusions. Like always, the Ativan put me straight to sleep and when I woke up everything was done.

(4:00pm) Arrive back home! What a long day!

 

Thanks to everyone following my journey. If you have any questions, please let me know.

-Josh

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Chemotherapy Rounds 14 through 18….. The joys of school and chemo!

13 Oct

When I told people I was expecting my new school to be very busy and chaotic… I was never expecting it to be like this! I apologize for not posting for a few weeks. I’ve been looking for the opportunity to update everyone on my journey for a while now and it wasn’t until this long weekend that I found that opportunity.

I began school on September 3rd, and began chemo again on the 12th. The really good news is that my chemotherapy has been very uneventful! As I said in my last post, the biggest differences between chemo in DC and Philadelphia is that in DC I see three doctors each time I go in for an infusion and that my Vancristine is done through a push instead of a drip. Otherwise the process is almost exactly the same.

I love my new doctors and nurses in DC. They’re very friendly and obviously really know what they’re doing. One thing that I noticed that’s a little different between DC and Philly is that things are a little cleaner in Philly. Also, things like pantries and activities for kids who are doing infusions are much less well stocked in DC. Frankly, often the pantries and activities for kids in DC are just empty, which I find somewhat sad because I have a laptop but little kids often have much less to do. I’m thinking about starting a drive at my new school to collect snacks and activities for young kids.

The biggest difference in my recents treatments has been doing chemo while going to school. School and chemo together have actually been very manageable. My school was amazing and set up my schedule so that my Thursdays have a very light work load and I don’t miss any classes for treatment. Friday mornings are also light meaning I can sleep in rest before going into school for the afternoon. My new school never sleeps, which at times can be exciting and at other times its really exhausting. On Tuesdays I don’t get home until 8pm because of debate. I’m really loving debate as an activity (I’ve never done it before). On Wednesdays I don’t get home until around 9:15pm because of choir. As I said the school never sleeps; I’m sure there are kids who are at school that late every night of the week.

My next MRI is on the 20th and then I’ll start treatment again on the 26th. On the 26th my parents and I will be meeting with the infamous Dr. P again so review my MRI… so that’ll be interesting.

I hope I get the opportunity to update the blog more regularly than I have over the past six weeks, however I can’t make any promises. As always if you have any questions or things in particular you’d like to to talk about, please just let me know . Thanks again for following my journey. I really appreciate the amazing outpouring of support and sympathy.

-Josh

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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

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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

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Precautionary MRI to Neurosurgery

26 May

Hi everyone. My name is Josh and I’m currently in the ninth grade. I’m from the greater Philadelphia area, and I want to tell you about my new “journey.” Roughly six weeks ago I began experiencing double vision. Thinking it was nothing, but still playing it safe, I visited a Ophthalmologist. The Ophthalmologist said that she was ninety percent sure the double vision was “swelling of the retinal nerves.” However, just to be sure I had to go and get an MRI. 

When I went and got the MRI, it went very smoothly. However, when my father and I met with the doctor they told us that the scan revealed a brain tumor. They told us that we immediately had to drive down to CHOP (Children’s Hospital of Philadelphia). When I arrived at the hospital I was taken to the Emergency Room. Later I was transfered to the ICU (Intensive Care Unit).

By the end of the night we were meeting with surgeons preparing to go into surgery the following day. In one day I went from having a precautionary MRI, and hopefully then going to school, to lying in the ICU getting prepped for neurosurgery.

When I woke up from surgery I was rather sick at first. Later on my family and I met with the surgeons who said that because of where the tumor was located the doctors would take the entire tumor out. The tumor is located on my retinal nerves and cutting it out would result in blindness. However, they took a piece of the tumor for testing and that my family would be meeting with an Oncologist soon.

When the tests came back the results showed that the tumor was grade 1 and benign. (Score!!) This meant that the tumor and my condition would be treatable.  However, it did mean that once I was out of the hospital I would have to start chemotherapy.

I was in the hospital for six days and they were drama and intensity filled. However, the nurses and doctors down at CHOP were amazing and I cannot thank them enough. I was lucky enough to have so many amazing people come and visit me in the hospital. I’ve never received so much mail and so many gift baskets! I’m very thankful for so much support.

Now that I’m out of the hospital I just finished my forth week of chemotherapy. Honestly, I hate chemotherapy and the way it makes me feel. However, as long as it’s working, it’s worth it.

So there’s the rough background of my “journey!” The process is forever ongoing so I’ll hopefully be posting often. Thanks for reading and following my story.

I’d love to hear back from some of you, please leave me a comment!

-Josh

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