Tag Archives: CHOP

Chemotherapy Week 9; Family Outing

28 Jun

Chemo started later this week. Normally my checkin is scheduled for around 9:00 AM. This week I didn’t need to arrive until 10:30 AM because my oncologist was doing rounds down in the main hospital. However, once we did arrive I checked in like normal and proceeded to have my vitals taken. When the nurse went to put in my IV she searched my hands for a possible vein. In the end she decided to leave my hands alone and actually insert the IV right above my elbow. I found this very surprising considering that I knew the nurses weren’t allowed to insert at the elbow with a chemo as toxic as Vancristine. I guess right above the elbow is okay! I did, however, find having the IV right above my elbow much more uncomfortable.

Here you can see the nurse putting the IV in right about my elbow instead of in my hand.

Here you can see the nurse putting the IV in right about my elbow instead of in my hand.

As I was leaving the room where the nurse inserted the IV I asked how long it would be before I saw my oncologist. They told me that there was only one person in front of me. However, she wasn’t even back from the main hospital yet. I sat down and the waiting game began. Eventually the nurse practitioner in training came over to let me know that my oncologist was running quite late. However, she said that she’d be able to do my examination if I’d like as to speed up the process. I hopped on this offer knowing she is a very thorough nurse and that I’d be willing to do anything to get things rolling.

When we went back to the examination room she asked if I’d be willing to allow her supervisor to sit in on the exam. Still being in training she had to have her supervisor look in on an exam. I was totally fine with this; I knew she’d be great. The exam began like normal and about halfway through my normal oncologist arrived. It was an oncology party! There must have been about five people in the little exam room. One of the things that was different about this week was that some of my counts had dropped more than I’d previously seen from the week beforehand. We talked about them and made sure there wasn’t anything to worry about. The nurse let me know that even know my counts had dropped, they were still extremely high and there was nothing to worry about.

That’s when I went back to the day hospital to begin my treatment. This week I was also given an anti-nausea patch along with the Zofran and the Ativan. Another difference in this week’s treatment was that my mom and brother accompanied me during treatment instead of my father. It was really great for them to be there with me and to see what the whole process is like. It became really obvious that I had really mastered the whole process. Being with family members who hadn’t been through the process meant that I really took the lead. I knew this process well! I have it down! The number of people I knew at the hospital also really stuck out. I knew tons of people around the hospital who were greeting me and checking it. At that moment one thing became apparent; I was no longer a beginner to this whole process. I’m a regular now. During the chemo one of the social workers came to talk to my family and I to discuss any possible changes that I’d like to see in the future. They wanted some feed back and I really thought it was awesome that they’re always looking to improve.

As always, if you have any questions let me know. Thanks for reading.

-Josh

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Chemotherapy Week 8; IV Issues

23 Jun

This week was almost exactly the same as last week except for one major exception. I arrived and checked in like normal, then nurses took my vitals. However, issues occurred when my nurse went to put in my IV. Unlike other days the nurse couldn’t find a vein for the IV. She searched my hands using tourniquets and hot packs, however she couldn’t find any obvious veins. She even searched my arms which is something they hadn’t previously done. They couldn’t go in at my elbow because apparently that’s very risky with the highly toxic Vancristine.

Finally the nurse chose a vein in my left hand that seemed to be somewhat hidden, however, she thought it would do the job. She wanted to use my left hand because my right was still bruised from the previous week and she wanted to give it a chance to recover. As soon as the needle pierced my hand the vein seemed to vanish. The nurse began “digging” around in my hand attempting to find the vein. Halfway through this process another nurse, looking to use the room to put in another patient’s IV, came in. After some more “digging” the other nurse took over. She was able to pierce the vein, however, when the IV went into the vein hardly any blood came out. The nurses decided that because the Vancristine is so toxic, and that the vein wasn’t responding well, they wouldn’t be able to use it.

Finally the second nurse found a much smaller vein in my right hand, the one they wanted to give a week to recover, and was able to insert the IV. There was very good blood flow and everything was working well. However, because the IV was in a much smaller vein I could easily feel it and it was slightly more irritable.

After waiting about an hour and a half, I met with my oncologist. I began talking with her about my vein and the possibility of getting a port. As I’ve said before, I really wanted to avoid getting a port. I didn’t want to have another surgery. However getting a port now seemed inevitable. I knew that if I had to get a port,then I just wanted to get it over with. My oncologist encouraged my dad and I to wait two more weeks until the intensive period was finished. She encouraged me to do so because once the intensive was finished, and I had my next MRI, we would know more about how the tumor is reacting. We decided that if this form of chemo was working, then it would be a good idea to receive a port. However, the reason she was having me wait was if this form of chemo wasn’t working. If this form of chemo is not working, then I would only have to get an IV every two weeks and getting a port might be pointless. The rest of the chemo in the second option would be administered orally.

Later on that day when I was in the day hospital, the nurse who put in my IV stopped by. She said that she overheard my discussion with the oncologist and that she thought I would be able to make it through another two weeks. She said that even know putting in my IV was painful, they didn’t even need to call in the IV specialists. I actually found this reassuring because I imagined that putting in the IV was more frustrating for my nurses than it was for me. I guess not!

So now I’m waiting. Hopefully the chemo is working. If it is then I’ll be getting a port before the maintenance period starts. Sorry I was a little late posting this week. As always if you have any questions or anything you’d like to hear about, please let me know.

-Josh

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Chemotherapy Week 7; Back to the Carboplatin

15 Jun

Well unfortunately after having two very manageable doses of chemo, I had to go back to the full regiment this week. Just like every other week we arrived at the hospital where we checked in and then the nurses proceeded to take my vitals and give me my IV. However, the most “painful” part of the day was waiting to meet with my oncologist. My dad and I had to wait for just over two hours to see my oncologist! We never mind waiting, because it just means that she is being very thorough, however it just makes the day even longer and more tedious.

Finally when I met with my oncologist she let me know that my blood counts were looking amazing. The only thing that was different about my normal examination was that my reflexes were totally gone! The previous week it because obvious that my reflexes were declining, however, this week they were totally defunct! The oncologist said that with most people they come back, however, even if they didn’t as long as I had full control over my feet then I would be fine.

The biggest thing that was different about this week’s treatment, was that my oncologist added Adivan to my regiment. Adivan is a drug normally used as anxiety medicine. However, in my situation it’s used to prevent nausea. The logic behind using Adivan is that the nausea I feel each week isn’t actually coming from my stomach, it’s coming from signals in my brain. Therefore, if I can use a drug like Adivan to calm my brain down I’m less likely to experience nausea.

Once I finally went back to the day hospital I received the Zofran first and the nurses warned me to eat my lunch before the Adivan was in my system. I ate my lunch as I was told. Next thing you knew, I was out! The Adivan put me straight to sleep! When I next woke up, the chemo was done for the day!

It was an average day, we arrived at the hospital at about 9:20 AM and left at 3:00 PM. I am very happy knowing I only have three weeks left in the intensive.

Today, the day after I had the chemo, I woke up in the morning feeling rotten. As a result, hoping to deal with the nausea, I took a Zofran and a Adivan. The Adivan caused me to fall asleep around 8:30AM and I didn’t wake up again until 2:20 PM! That medicine works wonders! I also woke up feeling much better than I was feeling when I feel asleep. Sleep is magical.

As always if you have any questions, please feel free to ask! I really appreciate all your support!

-Josh

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Chemotherapy Week 6; Quick & Easy!

7 Jun

This week’s round of chemotherapy was the fastest yet! This was a big surprise to me considering last week was so much faster than the others. This week might have been the fastest yet because I had an 8:30 AM appointment which meant that I was practically the first patient to be treated.

When I arrived at oncology we checked in and then was almost immediately taken back to have my vitals checked. As a nurse was taking my vitals another nurse popped her head in and said “once you’re done, come next door and I’ll do your IV.” This made me happy because in the past I’ve had days where they take my vitals and then I have to wait a half hour to get my IV, just prolonging the day, however that wasn’t happening this week!

As soon as I had gotten my IV I went back out into the waiting room and began using my laptop as I was expecting a long wait like the week beforehand. However, after only about thirty minutes (compared to an hour and forty-five minutes the week before) the nurse practitioner came out to come and get my dad and I. We were meeting with a nurse practitioner (in training) this week because my normal oncologist wasn’t in today. She was very nice and obviously had a very good understanding of what she was doing. It was interesting to see how being a nurse practitioner in training she did a much more thorough check than I was used to. She review everything from diet, to feeling, to reactions from the week beforehand. I found it very impressive. One thing that was different this week from my other exams was that there was an obvious decrease in my reflexes. This is something that is apparently very normal. However, I just found it bizarre!

Finally after finishing with the nurse practitioner we went back out into the waiting room for about fifteen minutes before I was called to receive my chemo. Because the treatment was expected to take no time at all (like the previous week) I was just taken into one of the rooms where the nurses put in the IVs. The chemo itself and the flush took less than fifteen minutes! New record!!! Afterwards they took out my IV and I was free to go.

Today was easily the smoothest and fastest treatment I’ve had! We were in and out in just over two hours! I have to say that I’m not looking forward to next week when I’m back to both chemos (the Vancristine and the Carboplatin) and I’ll be back in the day hospital for an all day ordeal. 😦

Thanks to everyone for reading and following my journey. If you have any questions, please feel free to ask and I’ll do my best to respond.

-Josh

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Chemotherapy Week 5

31 May

Today was my fifth week of chemotherapy, and surprisingly it was very different from other weeks. When I woke up this morning and went downstairs for breakfast my dad looked at the schedule I was given on the day of my first treatment, and it reviled that today I was only taking the Vancristine. This made me very happy because it meant that instead of being in the hospital for three hours, it was possible that I would only have a half hour of treatment!

When I arrived they took my vitals and put in the IV like normal, however, afterwards I had to wait over an hour and a half to meet with my oncologist! My appointment was meant to be at 9:30, and instead we went in at 10:45! She’s obviously had many patients this morning, therefore there were no hard feelings. However, the wait was killing me!

Having gotten adjusted to the process of going through the chemo each week, my meeting with my oncologist was very brief. When meeting with her, she told me that because I wasn’t getting the Carboplatin this week I wouldn’t need the Zofran either. Apparently all of the nausea is caused by the Carbo, therefore since I wasn’t getting it, I wouldn’t need the Zofran. This sped up the process even more!

Afterwards, they didn’t even take me to the hospital! Instead they just put my dad and I into one of the small rooms where the nurses put in the IVs. Due to the fact that my treatment only lasted 15 minutes, they didn’t see any need! Afterwards I was free to go! I was out of the hospital by noon! Even with the extra waiting for the doctor, it was one of the fastest days I’ve had. I was very happy!

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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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