Tag Archives: chemotherapy

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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Update, The Final Stretch

27 Mar

To begin, I want to say that I really appreciate everyone’s patience with my lack of posts. It’s been an extremely busy last couple of months.The last time I found the time to post was Winter Break back in December and now it’s Spring Break, which I hope speaks to how busy I’ve been.

Right now I’m away with my Grandmother, and we’re having an amazing time. Even when I’m not away and just in school I’m constantly reminded of how lucky and blessed I am. I’m blessed to have treatment that’s going very well, I’m blessed to have an amazing family, support network and education and I’m also blessed to have people following my story.

In the past couple of months my treatment has been mostly uneventful. I’ve now completed thirty-three of my forty-one treatments, which means I only have eight treatments left. I’d like to think that I’m now in the final stretch! Most of my treatments have gone very smoothly. Normally, I have my infusion of Vincristine and Carboplatin on Thursday afternoons. I normally feel pretty sick afterwards but then I’m able to bounce back and feel okay by the end of the weekend. Lucky I’m still able to go to my classes on Fridays.

One of the few “eventful” moments happened back in mid-January. I had returned from vacation with my family and was back in DC. I was in the middle of exams and studying like crazy. One morning I woke up and within an hour or so had a very strong migraine. I had just recently had an MRI and the migraine couldn’t help but make my mom and I suspicious that the pressure in my head had finally become an issue. We called the hospital and they look at the MRI. The MRI didn’t show increased swelling. Instead, they assumed that the rigorous study and particularly time spent in front of screens is what caused the migraine. My doctors then stressed the importance of letting one’s eyes rest to prevent eye strain, which is what I was going through.

The only other “eventful” moment was during my most recent set (meaning a group of four weekly infusions) when during my first infusion I “bounced back” much less effectively than expected. Normally during my first infusion after a two week break I react normally if not somewhat better than after other infusions. This was a little concerning. However, after talking with my doctors it just seemed to be a strange outlier. The following week I reacted totally normally.

In the next few weeks I have my next MRI and then I’ll be meeting with my entire team which includes the neurologist and the neuro-ophthalmologist. This means an entire day spent at the hospital. We’re hoping for good results. I’ll hopefully find time to post and fill you all in on the results.

Again, I want to thank everyone who’s following my journey. Your support and well as your patience has been incredible.

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

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.

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

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

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