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! 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.
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.
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.
On of the nurses took this photo as they were putting me to sleep. Thumbs up!
Photo taken by the nurse during surgery.
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.
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.
This is an eye exam; taking a photo of my retinal nerve.
Photo comparing Eugene from one MRI to the next.
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)!
Selfie with Dad right before going in for surgery to have the port taken out.
Finally, one last photo of Eugene the brain-tumor!
Again, thank you.
Josh's Journey 
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