Tag Archives: port

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

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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.

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