Tag Archives: CHOP

No More Needles to the Chest; Last Infusion!

22 Aug

Last time I updated all my amazing readers on the progress of my journey, I was in the home stretch. I was away with my grandmother enjoyed some R&R before heading back to DC to finish up the school year along with my last eight rounds of chemotherapy. Upon my return to DC, I had my next MRI which revealed no increased growth or any change. This meant that my family and I were cleared to finish up my treatment of Vancristine and Carboplatin and be done for the foreseeable future.

Well, I have some very good news. On June 12th at about 5:30pm, I finished my last chemotherapy infusion at Children’s National Medical Center in DC!

The last roughly three months of treatment did, however, come with a few hiccups. As I proceeded through my last infusions, my reaction to the chemo became increasingly worse each week. My ability to bounce back from each infusion was nothing compared to what it was when I first started. Although this was somewhat expected, it was still quite unpleasant. Around the time of my last post, I would do an infusion on Thursday afternoon and if I took my normal prescriptions, I would be well enough to force myself through an abbreviated school day on Friday and then I would be fine by Sunday afternoon. This slowly changed and by then time I reached my forth-to-last infusion my normal cocktail of drugs for coping with the side-effects just wasn’t cutting it. During that forth-to-last infusion I was extremely sick, didn’t make it to school that Friday or Monday, and just couldn’t eat anything.

It was at this point my doctors added a drug called Emend to my regiment.The effect of the drug, as it was described to my parents and I, is that it helps the other drugs that counter the effects of the chemo have an increased impact. At first I only took Emend while I was in the hospital as one of my pre-meds before doing an infusion. However, once the side effects started to become increasingly worse (forth-to-last infusion sort of worse) my doctors wrote out a prescription to take the drug at home. It’s always taken in pill form, even when in the hospital. The prescription did come with a slight warning, which was that many types of insurance don’t cover the drug and it can be frightfully expensive if you have to pay for it out-of-pocket. Luckily, I have one of the types of insurance that does cover it. This is one of the things I’m extremely thankful for: amazing health care as well as being in a situation where my family can afford fantastic health coverage.

It was also around the time of when we added the Emend that my family and I had a serious talk with my oncologist, Dr. R, about finishing treatment. What he told us was that we would see what my reaction was like once the Emend was added, but that if the drug didn’t work we would just stop treatment two of three infusions short of the total plan. Apparently with all the drugs I was taking at the time, Emend was basically the last thing they could add to help deal with the side-effects. At that point, with only a few infusions to go, there would be no point in finishing out the last few if they were still making me so sick. As he described it, there’s no way of knowing exactly how many infusions it takes to kill this sort of tumor. They think it’s somewhere around forty-two, but it could be less or more and that’s why there’s no crucial reason to do exactly forty-one.

Luckily the Emend had a big impact, and on June 12th I arrived at the hospital with my entire family, including my grandmother visiting from overseas, for my last infusion! I was very happy to make it to my last infusion; of course I didn’t want to be sick, but I also wanted to finish what I had set out to complete. My family and I brought in a big cake to thank my entire team at the hospital, everyone from doctors to nurses and everyone else were all so amazing. We were able to take a photo of the cake (only one piece short of the completed thing).

It was a fantastic feeling finishing treatment. It was also, however, sad saying goodbye (even if only temporarily) to such an amazing team of people. It was at that time that my entire family and I looked back on being diagnosed sixteen months beforehand, being admitted to the ICU and having neurosurgery and then completing forty-one rounds of chemo between two different cities, hospitals, and teams.

This was the cake we brought in to thank the entire team at CNMC. Everyone got a slice!

This was the cake we brought in to thank the entire team at CNMC. Everyone got a slice! Amazingly, Dr. Mason, who was the first person I had contact with at CNMC, was doing his residency in neuro-oncology. His last day of residency was also the day of my last infusion!

Dr. Mason and I. His last day of residency, my last infusion.

Dr. Mason and I. His last day of residency, my last infusion.

A photo with my oncologist and my nurse practitioner. Couldn't have done it without these amazing professionals!

A photo with my oncologist and my nurse practitioner. Couldn’t have done it without these amazing professional, people!

Exactly a week after my last infusion I decided to count up all of the hospital bands which I had saved from my journey. To do the math: 1 brain tumor = 16 months of treatment = 6 MRIs (at the time) = 41 rounds of chemo = 51 hospital bands.

Hospital bands galore!

51 bands from both Philly and DC. Everything from MRIs to surgeries to chemotherapy infusions!

All that was left to be done was have my port removed and a few days later we received the call that on the 27th of June I would be going in for day surgery to have my port removed. Interestingly, most people don’t have their ports removed until they get two clean scans back. However, Dr. R told us that if the tumor, Eugene, was to begin growing again I would most likely start taking an oral drug instead of doing infusions so we decided to take it out.

Therefore, early on the morning of the 27th, we made the trip out to the hospital where I was admitted and had the port taken out. One of my big requests was that I could take a photo with the surgeons before going under and that they would take a photo of the port for me once it was taken out of my chest, which they did!

I took a selfie with the surgeons right before going under. Don't worry, they were super cool with it.

I took a selfie with the surgeons right before going under. Don’t worry, they were super cool with it.

On of the nurses took this photo as they were putting me to sleep. Thumbs up!

On of the nurses took this photo as they were putting me to sleep. Thumbs up!

Photo taken by the nurse during surgery.

Photo taken by the nurse during surgery.

This is a photo of the port that was in my chest for 11 months!

This is a photo of the port that was in my chest for 11 months! This was taken in the OR right after they took it out. If you zoom in you can see the little needle holes from when they accessed the port before doing an infusion.

A week after surgery I met with Dr. A, the neuro-ophthalmologist. I did a visual-field test in addition to having some photos of the back of my eyes taken. What Dr. A then told us is that when people have the type of cranial swelling and double vision like I experienced when first diagnosed they expect to see some sort of retinal-nerve damage and vision loss. Amazingly, he himself seemed almost shocked when telling me this, I have no retinal-nerve damage or vision loss.

Finally in mid-July I had an MRI and a follow up with my neurologist Dr. P. The MRI showed no change whatsoever meaning I was given the final clearing to come off treatment! Apparently, Vancristine and Carboplatin can have a really nasty effect on teenagers causing nerve damage and he himself seemed really surprised that I was able to finish all sixteen months of treatment.

I decided to wait until now to update you all on my journey because not only have I been extremely busy with a chemo-free couple of weeks, but I also wanted to make sure everything was looked good before writing this post. Ultimately, I am truly blessed. I had some of the most amazing care, doctors, nurses, and support team, both in and out of the hospital, that I ever could have asked for and I can’t thank them enough. Is it unfortunate that I have a brain tumor? Of course. But I also take pride in knowing that I was able to overcome many obstacles to get to where I am today, and I couldn’t have done it without so many amazing and talented people. I have to especially thank my teams at CHOP and CNMC, my school, my family, my brother and my parents for everything they did to help me get through a challenging year of growth.

Many people have asked me: is this the end of Josh’s Journey? Of course not. Eugene the brain tumor will always be there, and it’s always something I am going to have to monitor and be careful of. Over the next two years I will be having MRIs every three-months in addition to meeting with the neuro-ophthalmologist and the neuro-oncology team. I’ll make sure to update you all on my journey after each MRI to let you know how everything is going.

I can’t thank everyone who has followed my journey enough. Your support has meant the world to me and helped me get through a testing time. I’m hoping to soon be launching a campaign to help bring snacks and food to kids who are doing chemotherapy infusions so please continue checking in for news on that. Below I’ve included a little timeline of photos from my journey.

Straight out of neurosurgery back at CHOP. This was when things all started.

Straight out of neurosurgery back at CHOP. This was when things all started.

This was taken the day of my first infusion at CHOP.

My first infusion at CHOP.

Me with Dr. B, my oncologist at CHOP. At this point I had finished 14 rounds of chemo and was transferring to CNMC in DC.

Me with Dr. B, my oncologist at CHOP. At this point I had finished 14 rounds of chemo and was transferring to CNMC in DC.

This is an eye exam; taking a photo of my retinal nerve.

This is an eye exam; taking a photo of my retinal nerve.

Photo comparing Eugene from one MRI to the next.

Photo comparing Eugene from one MRI to the next.

One of the nurses putting an IV in my arm before having an MRI!

One of the nurses putting an IV in my arm before having an MRI! Gotta stay positive!

Getting cozy for my last infusion (June 12th, 2014)!

Getting cozy for my last infusion (June 12th, 2014)!

Selfie with Dad right before going in for surgery to have the port taken out.

Selfie with Dad right before going in for surgery to have the port taken out.

Finally, one last photo of Eugene the brain-tumor!

Finally, one last photo of Eugene the brain-tumor!

Again, thank you.

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Maintenance Round 1 Complete; Sad Day

23 Aug

Well today was my last round of chemo in my first maintenance cycle. In a lot of ways this week way just like last week. However, there were some key differences. When the nurse was accessing my port it was so much less painful than it been any other week. Every week it becomes easier and less painful to access which is really helping to make the process easy and smooth. Another difference between last week’s treatment and today’s treatment is that instead of receiving Vancristine and Carboplatin (the usual cocktail), I only received Carboplatin. Apparently during the maintenance cycles the first three weeks are Vancristine and Carboplatin and then the final week is just Carboplatin. This made the the entire transfusion about a half hour shorter. Also, we went over my opthalmology results and just like the doctors from the suite, my oncologist was shocked with the results. Besides for these three differences, this week and last week was almost exactly the same!

Except……. for the fact that this was my last transfusion at CHOP. Some of you know and others don’t that I am moving to Washington DC in a few days. It was sad saying goodbye to all the amazing people at CHOP, especially my oncologist Dr. B. Over the next few days I’ll be moving down and then meeting with my new doctors at National Children’s Hospital in DC. I have a meet and greet with Dr. P who’s the head neuro-oncologist down at National Children’s and then with members of the oncology team on Tuesday. After that I’ll be able to enjoy the rest of my two weeks off before beginning my second maintenance cycle down in DC.

From what I’ve heard, the process is much different down in DC. Apparently I only meet with the head neuro-oncologist once a cycle (six weeks). Otherwise my exam is done by the nurse-practitioner. I’m not exactly positive regarding how some of the other aspects of my treatment will be different. I know that instead of doing the Vancristine in a 10-15 minute drip like they do at CHOP, National Children’s administers the Vancristine in a 5 minute push. I’ll let you know about some more of the differences on Tuesday.

As for today when I met with my current, incredible oncologist, Dr. B, we talked about the transition and keeping in touch. My dad and I brought he a gift as a thank you. It’s amazing how one person and her team can make something like going through chemotherapy feel so comfortable and easy. Not only was the process easy but over time I learned how to laugh about my situation and just make the best of it. We probably laughed more than you should in an oncology suite. Oh well.  I am going to miss the CHOP oncology team and their kindness, understanding, humor and all around passion for what they do every day.

Dr. B and I during out last exam.

Dr. B and I during out last exam.

Hopefully, the oncology team down in DC is as welcoming, friendly, and humorous. I will definitely miss CHOP and it’s caring people.

Thanks for following my journey. Let me know if you have any questions or anything you’d like to hear about.

-Josh

Visit with the Neuro-Ophthalmologist

20 Aug

Yesterday was my appointment with the neuro-ophthalmologist. My oncologist has been insisting that I see the neuro-ophthalmology team to follow up on the improvement in my vision since my surgery and diagnosis. Since I had my surgery back in April my double-vision has totally disappeared.  However, because it’s obviously not healthy to have double-vision my oncologist wanted to see how healthy my eyes are now.

When I arrived at the ophthalmology suite I checked in and then had to wait around forty minutes before going back to meet with the doctor. The appointment began by meeting with one of the ophthalmology fellows who had me recap my diagnosis and previous medical treatment. She did a very thorough recap of everything that was going on and put the recap in my medical records. She quickly looked in my eyes and did some simple tests before the head neuro-ophthalmologist came in. When the neuro-ophthalmologist came in he decided that because I hadn’t previously see the neuro-ophthalmology team he wanted to do a full exam. This meant that I would have to do a visual field test and then receive dilating drops so that the team could look into the back of my eyes.

I had previously done a visual field test when I was an inpatient in the ICU. My last visual field test was done when I was just hours out of neurosurgery and still experiencing very apparent double-vision. During  a visual field test a technician covers one eye and then places your head in a machine. In the machine there is one light where you focus your uncovered eye. As you focus on the light other little white dots appear throughout the machine and you click a button every time you see a dot. The test both eyes. Believe it or not this test is really hard!

After the test the technician put the dilating drops in my eyes and then sent me back to the waiting room. I went and got a snack and before I knew it I was called back to meet with the doctor. My doctor, dad, and I went over the results and looked into the back of my eyes. The doctor was shocked! Apparently when you’re diagnosed with a tumor like mine (because of it’s location) and experience double-vision you expect to see some vision loss. The doctor couldn’t find anything wrong with my eyes! When they looked into the back of my eyes they saw the equivalent of scaring around my retinal nerves, which is normal when you’ve had double-vision, but this has no effect on vision.

The team of doctors was actually really surprised. They were looking for something wrong; either vision loss or loss in depth of field. However, they couldn’t find anything wrong! This was awesome news!

The appointment took roughly two hours. It took a few hours before the dilating drops wore off. Now I’m just getting ready for chemotherapy on Thursday. One more round before a two week break!

Thank you for following my journey.

-Josh

Maintenance Period 1; Weeks 2 and 3

17 Aug

Hello again everyone. I apologize for not posting last week. I was feeling pretty beat after chemo and never got around to posting. I decided I’d just give a brief overview of the previous week in this posting.

July 8th, Round 2

Everything started normal for week two. I arrived at the day hospital and the place was almost deserted. I don’t know if I’ve even seen it that quite. My dad and I have discovered that if you arrive a half an hour early, you have a much stronger chance of being one of the first people treated. As soon as we checked in I took my registration over to triage where they immediately took my vitals. As soon as they finished taken my vitals I was called into a neighboring room to have my port accessed. I was nervous because it was my first time having the port accessed.

It’s a much different process having a port accessed than getting an IV. When you get an IV, they simply clean the sight where the incision will be and then insert the IV. When having a port accessed I had to wear a face mask and the nurse had to clean the area of the port for thirty seconds before she inserted the needle. Apparently needles for ports come in three different sizes: three-fourths of an inch, an inch, and an inch and a half. Because it was my very first time having a port accessed, they used the three-fourths inch needle. There was still quite a bit of swelling around the port because it was still just a week old. It took the nurse a minute or so to pierce the port. Once she did access the port she took blood for my weekly tests. The line was pretty sluggish getting blood return but it worked just fine.

Almost immediately after the nurse finished accessing my port we were called back to meet with my oncologist. It was definitely looking as though arriving just a half hour early makes a huge difference. The meeting went very smoothly. All my medications and chemotherapies were going to be the same a the week before. After a quick and easy exam from my oncologist we headed back to the day hospital to start my chemo. We were making record time!

Back in the day hospital I quickly began my regiment of medications. Like the previous week I had to take Benadryl. Unfortunately it had a similar effect as the previous week and I was all jumpy. Once again I felt as though I wanted to crawl out of my skin. Once the reaction finally wore off I fell asleep. Because the line was so groggy it took my chemo regiment four hours to finish! Normally my regiment only takes around two hours. Still the four hours passed and I was finished my regiment for the week.  In the grand scheme of things, it was a pretty normal week of treatment.

July 15th, Round 3

Like the previous week we decided to arrive at the hospital a half hour early hoping to beat the rush. When we arrived the hospital was packed! It was one of the busiest mornings I think I’ve ever seen. I turned in my papers to triage, but the place was overflowing with people! After waiting for about twenty minutes (longer then we’d normally wait to go back to triage) one of the nurses came out into the waiting area to get me. She told me that because triage was so packed, she was going to access my port before triage. We went back to a different part of the hospital where I went though the same port accessing routine that I described in the previous week. It was a little less painful this week because the swelling had come down a considerable amount. However, this time the nurse used an inch long needle. You could tell as soon as she used the longer needle that everything was flowing much more easily and that the chemo would be much less difficult going through the line.

After my port was accessed I went back to the waiting room. However, it was then only a few minutes before I was called back to triage. It look as though things had lightened up. As I was going though triage one of the nurses told me to grab my dad as soon as I was done and to go back and meet with my oncologist. This was really surprising because the hospital was packed! Regardless, we weren’t complaining.

When we met with my oncologist things were very routine. My oncologist had a visiting medical student from Austria with her who was extremely nice and interesting to meet. There was one big item on our agenda though: Benadryl. The stuff had made me kinda crazy the previous two weeks and I was really hoping we’d be able to come up with a solution. As soon as we brought it up with my oncologist, she decided that it was unnecessary. I couldn’t have been any happier about this. In my mind no Benadryl is good Benadryl.

After a quick exam I was taken back to the day hospital where I began my treatment. The one inch needle was obviously the way to go because the chemo was moving at it’s regular speed. While I was in the day hospital we met a family with a little four month old baby who has a tumor right behind is eye. I had met them once before. However, this time they gave us the news that the tumor had almost totally calcified! This was amazing news. The family is from Utah and it really put how lucky I am to be living in Philadelphia into perspective. I live near one of the best children’s hospitals in the world and people travel from all around the world to be treated at CHOP. The whole experience has made me feel so blessed.

Thank you for following my journey. I’ll do a better job posting after each week’s treatment.

-Josh

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

Back to the Hospital!

31 Jul

Well it’s been great to say that I haven’t had a lot to post about of the past few days. My family was able to take a much needed vacation in beautiful Kiawah Island, SC. Now that we’re home is time to get back into the chemo routine.

Tomorrow is a big day because I’m having a port put in. It became very obvious during the last couple of my treatments during the intensive period that I was going to need a port. On the very last week of the intensive, week 10, I had to receive three different IVs before they found a vein that worked! The nurses even called out as they struggled to find a vein, “thank god you’re getting a port!”

Check in tomorrow for the surgery is 7:30 AM. The surgery is done by the interventional radiologists. At first it was scary to hear that the surgery was done by interventional radiology, however, it quickly became obvious that the interventional radiologists are very skilled and the best people to put in the port. Check in to check out is supposed to be somewhere around six hours. Once I’m checked in at 7:30 they take my vitals and prep me for surgery. If everything goes to plan, I’ll go into surgery around 9:30. The surgery is expected to take around an hour and a half.

Unlike when adults have ports put in, I’m fully sedated during my surgery. However, unlike my neurosurgery they don’t use anesthesia. Instead they use deep sedation. I’m not exactly sure what the difference is. I know it means that recovery time is shorted, but I’m not sure that the other big differences are. The side effects are expected to be pretty minor. I’m expected to have some discomfort but nothing major. Also, I know that I cannot submerge the area where the port is placed for a week and I cannot do any intense physical activity. They’re going to leave a line in the port, that way when I have chemo on Thursday, the nurses can use the port.

Hopefully everything goes to plan. I’ll fill everyone in on how things went on Friday after my surgery and my first chemo of the maintenance period. Thanks again for following my journey and for all the amazing support.

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