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Chemotherapy; the process

29 May

Once I had the biopsy and was discharged from the hospital I began going through chemotherapy to treat the tumor. I had my first chemo treatment about ten days to two weeks after I was released from the hospital. Every Thursday I drive down to CHOP’s Wood Center where the oncology day hospital is located. I’ve now completed the first four weeks of my intensive period  treatment, which means I have six weeks left. The process that I go through every Thursday has lots of steps so I thought I’d run through them.

1. Check In (8:30 – 9:00 AM) – This step couldn’t be much simpler (or obvious). Once I arrive my dad and I fill out a form to check in. After a short wait we’re called up to the front desk where I’m given a wrist band with all of my information. My dad also checks to make sure all of my contact and insurance information is up to date.

2. Vital Signs (9:00 – 9:10 AM) – The first real step of the process is a nurse calls me back to take my vital signs. They take my weight, height, blood pressure and temperature.

3. IV (9:20 – 9:30 AM)- Once they’ve taken my vital signs a nurse then calls me back to get an IV. I almost always get the IV in my right hand. However, the first week I got the IV in my left hand and it didn’t go so well. The photo below is from my very first IV which they did in my left hand, and haven’t done since. When they put in the IV they also draw blood to check my blood counts.

4. Meet with Oncologist (10:00 – 11:00 AM)- After I’ve received the IV my family and I normally have to wait awhile before meeting with my oncologist. From what I’ve heard they always wait to meet with the oncologist until the blood work is back – that’s why there is always some waiting involved. The oncologist reviews my blood counts with my dad and I and checks to make sure there aren’t any drastic changes from the week before. They say that for many of the counts they’re looking at that it’s normal to see decreases – they just don’t want to see any crazy changes from the week before. Finally, if everything is going well, I have a quick examination from my oncologist who mainly checks my eyes (as I was having double vision before) and my reflexes. Apparently it’s normal to see reflexes decrease on chemo, however just like with everything else, they don’t want to see anything drastic.

5. Day Hospital/Chemo (11:00 AM – 2:00 PM) – Finally, if everything goes smoothly I’m taken back to the day hospital where I sit in a big comfy chair and receive my chemo. Once we’re back in the day hospital if often takes my chemo awhile to arrive. However, once the chemo does arrive everything goes very fast. The first medicine I take is called Zofran, which is to prevent the nausea that the chemo causes (25 minutes). Then I have my first chemo called Vancristine (10 minutes). The Vancristine, in my opinion is always the strongest and almost instantly causes a feeling of fatigue. That’s why after the Vancristine when I receive the Carboplatin I normally sleep through the majority of the treatment. The Carboplatin lasts about an hour, so it’s always a bonus when I sleep through it.

6. Check out

The chemo normally makes me feel pretty sick the day after, Friday, and sometimes into Saturday. However, always by the end of the weekend at the latest I’m feeling pretty good again. I take Zofran, the exact same medicine I’m given before I receive the chemo, in a pill form if I’m feel nausea. The Zofran in the pill form seems to work better sometimes more than others.  The times I listed with each step above are somewhat of a rough outline of the routine. Every week is different, however, I thought I’d show roughly how long each step takes. The gaps between each step represents time spent waiting.

My first chemotherapy IV.

My first chemotherapy IV.

The bag containing my Vancristine.

The bag containing my Vancristine.

If you have any questions about the process feel free to leave a comment and ask.

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My experience with neurosurgery

27 May

Now that I’ve written a little about my time in the hospital I thought I’d write about the surgery itself.

To give more information about the surgery, I have to talk more about the tumor itself. As I said in my last post, I began meeting with doctors because I was having double vision. Once I had the MRI that reviled the tumor doctors discovered that the double vision was occurring because the tumor was putting pressure on my retinal nerves. The tumor was particularly located on the chiasma. This meant that when the surgeons went in to operate they wouldn’t be able to cut the entire tumor out… this was because if they touched the retinal nerves, I’d totally lose my vision. In the end, the surgeons preformed a simple biopsy.

My preparations for surgery  began late the night before I went into surgery. Starting at midnight the night before I went down to the OR, I was not allowed to eat or drink anything. I didn’t go down to the pre-op until 5PM the next day. I was sooo hungry!

When I was finally wheeled down to the pre-op I met with some of the nurses that would be in the OR as well as the anesthesiologists. When meeting with the anesthesiologists I told them that my one goal was not to remember anything from the OR. The anesthesiologists gave me medicine in the pre-op to begin the process of knocking me out. That stuff made me loopy!

Finally, I said goodbye to my parents and was wheeled into the OR. Once inside I was surrounded by nurses and doctors who were ready to knock me out for real! They put a mask over my mouth and nose and asked me to count down from 100. Counting down from 100 turned out to be very eventful because I made it all the way to 86. Apparently most people don’t make it past 95. That’s the last thing I remember from the OR!

Next thing I knew, I woke up again in my room in the ICU. My mom was beside me and informed me that the surgery only lasted three hours, which apparently is a very good sign for neurosurgery. The doctors reported that the tumor was squishy and it waas easy to remove a small piece for testing. When I woke up I immediately noticed three things. The first was that my hair was parted and felt as though it was gelled. That’s because the doctors didn’t have to cut my hair at all, instead they just parted it with a Vaseline like gel. The second thing was that I had a tube coming out of my head. This was because the doctors needed to put in a drain for the fluid that was building up in the fluid pool’s of my brain. Finally, I felt very nauseous from the anestesia. I was throwing up which was a little painful, because there was nothing in my stomach to throw up!

Over the next few days I began recovering from the surgery. I was constantly meeting with different doctors. I was given morphine every four hours to help deal with the pain… It obviously worked because I don’t remember being in much pain!! One of the first things I remember after surgery is my surgeon, Dr. Storm, walking in and called “Mr. 86!” which I quickly learned was quite the accomplishment!  Eventually I had to get another MRI late at night. Also, the tube was removed from my head (which turned out to be a very painful process).

In the end the surgery went very smoothly and I’m glad everything worked out so well. I hope I was able to give a little insight into the process of having neurosurgery. I’ve attached a picture of my head and the stitches when I first woke up. I apologize

The stitches and incision site from my neurosurgery.

The stitches and incision site from my neurosurgery.

if it’s a little too graphic for some of you.

-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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