Tag Archives: brain tumor

Surgery and return to the day hospital

4 Aug

Wednesday was the big day; the day that I had my port put in. At first I was very nervous about the operation but it quickly became obvious that the procedure is very routine and that there’s not a lot to be worried about. At 7:30 AM my Dad and I checked in with interventional radiology. Very quickly we were taken back to the sedation unit of the interventional radiology suite. Just like with chemo I began the process with a nurse taking my vitals. Afterwards the nurse took me back to my own simple room where I had to wipe myself down before changing into scrubs. Finally, the nurses gave me an IV. Luckily they were able to insert the IV at my elbow. I doubt they would’ve been able to find a vein anywhere else! Finally after I was finished being physically prepped for surgery, the nurse practitioner came back to go through her final checklist. She mostly went over preexisting conditions. Luckily, besides a brain tumor of course, I don’t have any preexisting conditions so my dad signed off on the surgery and I was given the green light.

I was supposed to go into surgery at 9:30. However, the surgeon was busy so I didn’t end up going into surgery until around 10:30. Before I was wheeled back to the OR one of the doctors came back to talk to my dad and I about some of the after effects of the surgery and the deep sedation. Finally two nurses wheeled me back to the OR. Due to the fact that the surgeon was running a little late, I was waiting and talking with the nurses back in the OR for about twenty minutes before the operation started. They were extremely friendly and it was very comforting to see how relaxed they were. More than anything they gave off the impression that they’ve placed tons of ports and that I’m really not that special.

The next thing I knew I woke up in the same room where the day had started. My dad was sitting there with me and in the grand scheme of things, I didn’t feel that bad. It took me awhile before I was ready to stand up and walk. However, once I did get up I was almost immediately given permission to leave the hospital. The nurses insisted that I rode down to the parking garage with my dad in a wheelchair, however, after that I was on my own again.

The port itself hasn’t been too bad. It was definitely uncomfortable the first couple of days, but now I’m starting to get used to it. It’s been tough not being able to take a real shower, and the site of the incision has been a little itchy as it heals but that’s about it!

The port really did help makes things easy the following day when I stated my maintenance period chemo treatments. Like always the nurses started by taking my vitals. Afterwards I was called back to the room where the nurses would normally put in my IV. This time all they had to do was draw blood. This was literally painless because the surgeon left a line into the port the day before when I had my surgery. This meant that the nurses didn’t even have to access the port to draw blood.

Eventually I was sent back to the waiting room and I began bracing myself for the normal prolonged wait. However, it was only about thirty minutes before I was called back to see my oncologist! Record time! The meeting was very regular. We basically went over some of the restrictions that go along with the first week of having a port. Afterwards I was taking back to the day hospital to begin my treatment.

The nurses decided to start my treatment with Benadryl and a precaution to a small reaction I had in the tenth week of my intensive. One thing that I had heard before about Benadryl is that it either puts you straight to sleep or makes you very agitated. The last time I had Benadryl it made me sleepy. However, unfortunately this time it made me very agitated.  It was hard to stay still and I felt like I wanted to jump out of my skin. Luckily after about twenty minutes the Ativan kicked in and I fell asleep again.

When I next woke up, my chemo regiment was all finished for the day. The only thing that was left to do was for the nurse to take the needle out of my port. This was pretty painful. However, she reassured me that the port was extra sensitive because it was brand new and that the following week shouldn’t be nearly as bad. My dad and I packed up our stuff and made our way home. Over the days that followed my treatment I was feeling pretty sick. I can’t help but think that having a brand new port had something to do with it. Luckily that’s all passed now and I can enjoy the next few days before my next round of treatment. Right now I am on my way down to DC to set up my room before I make the move permanently later this month.

As always, thank you for following my journey. If you have any questions or anything you’d like to know, please don’t hesitate to ask.

-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

Good news!

13 Jul

This morning my family and I got some very good news! We heard the results of the MRI and it showed that the tumor had stopped growing and might have even shrunk a little. This means that the chemo has been working well and that I’m clear to go onto the next step of my treatment. The next step is called the maintenance period where I have chemo for a month straight and then have two weeks off. This maintenance period lasts for almost a year.  The next big step, however, of my treatment will be getting a port later this month before I start the next stage of treatment. Getting a port means that I don’t have to get IVs when I go to the hospital.

Thank you to everyone who has been following my journey. I really appreciate your 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

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