Well my insurance company finally came through and approved the drug I needed to stimulate stem cell production. I believe that I have now successfully collected enough stem cells to allow me into the 8h9 clinical trial. My doctor’s told me that they wanted to harvest 7 million cells but that 2 million was the bare minimum. After six days of collection, I was able to produce 3.4 million cells. Hopefully this will be enough, as the protocol for the clinical trial has still not been released, but they told me that I would not be able to collect any more cells because I have had so much chemotherapy.
I returned to New York as planned. I had a little surgery on Wednesday, August 12, to insert a leukapheresis catheter in my groin. I had originally been told I was going to have my chest catheter replaced, but they later said that the only vein in my body that was large enough to support the stem cell collection was in the groin. The second collection began immediately after my surgery, and ended up lasting three more days. Because of the temporary catheter in my groin, I was kept inpatient until Friday, August 14. Fortunately, I was able to stick around just long enough for the candy cart to come by my room on the pediatric floor. Marissa and I stocked up for the long drive home starting Saturday morning. We got back home on Sunday evening, August 16, Just in time to start chemo on Monday morning.
I started my 17th round of chemo on August 17th. This round, like the last few was relatively uneventful. I have had some mild nausea, but most of my side effects are now attributed to the steroids that I am taking. Decadron (dexamethasone) is given with my chemo to help prevent nausea, allergic reactions, and to stimulate my appetite. I have recently learned that taking this drug at high doses for a long period of time can cause Cushing’s syndrome. The effects are completely reversible when I stop taking it, but symptoms are severe swelling, back pain, bruising and thinning skin, fatigue, and insomnia, all of which I have. I spoke with my doctors about it before I started my 18th round and they drastically reduced the dose. Hopefully I will see some results in the next few weeks.
As Marissa and I were looking at the calendar, we noticed that we would be in NY for medical treatment on our 5th Anniversary. That is not very romantic, so we decided to take a spontaneous trip to Nashville on September 1st to celebrate. We spent the night at Hotel Indigo near Vanderbilt and went to the Grand Ole Opry. Marissa seemed to really enjoy it, and although I’m not much on country music, it turned out to be a fantastic evening.
Because we were so close, and feeling relatively well on my off week, we decided to visit my family in West Tennessee for the remainder of the week. Our last visit there was in April. Because it was more or less a spur of the moment trip, we caught everyone of guard, but that made the visit a little more relaxing. I was able to go watch my nephew’s play football, Hunter on Thursday night for Northview Middle School and Dawson played Friday night for Dyer County High School. Saturday, of course, was Tennessee football, and a fabulous family dinner. Sunday morning, September 6th we returned back to Atlanta.
After we got back home, Marissa was changing my bandages on my chest catheter and noticed that once again all of the sutures have pulled out. The catheter had pulled out of my chest about 2 inches. Tuesday morning I had an x-ray of my chest to see if it was in a safe position to receive chemo. They said that I could receive this round, but that it would have to be replaced immediately afterwards. I will be returning to NY this weekend for another set of scans on Monday. Dr. Laquaglia will be replacing my chest catheter Tuesday morning, September 22. I should get scan results back on Tuesday or Wednesday. Until then, we pray.
Thanks for taking the time to check in on me and for continuing to pray for me. I have no doubt that is why I am still here.
Wednesday, September 16, 2009
Monday, August 3, 2009
Stem Cell Harvest and Scans
As always, it has been a long time since my last post. A lot has happened since then, but not much has changed the last few weeks. We have asked many questions, of many doctors, and received very few answers. My most recent scans were performed on July 22 in New York. The scans show no new tumor growth, only the same questionable spots from previous scans that are still believed to be scar tissue. I am very thankful for these results, as significant tumor growth would make me ineligible for the 8h9 clinical trial that I have been anxiously awaiting.
Before the scans, beginning June 8, I began my 15th round of chemotherapy. It was very uneventful, as are most rounds recently, which is a very good thing. My 16th cycle of chemotherapy began on June 29. It too was uneventful. My scans, normally scheduled during my off week between cycles, were not scheduled until July 22. The delay was necessary because my scans were scheduled along with my stem cell harvest to prepare for the 8h9 clinical trial. Because I have had so much chemotherapy, my body is not able to produce enough stem cells for collection. To get around this, I was given a drug called Neupogen (G-CSF). This drug can be given at home, but unfortunately, it is an injectable, meaning Marissa had to give me multiple shots in each arm for 8 days. She did a fantastic job, but she was not thrilled.
My stem cell collection began on July 23. To collect the cells, an oversized IV line is placed in each arm. Blood is drawn out of the body from one arm, run through a centrifuge machine, and then given back through the other arm. Although very little blood is out of the body at one time, over the 5 hour process, the entire volume of the body’s blood is removed three times. Some patients are able to collect their required amount of cells in a single collection. Unfortunately, I was unable do this. I was told that I needed to collect a total of 7 million stem cells. On the first day, I was only able to collect 500,000 cells, or 0.5 million. I went back on Friday, July 24, hoping to collect more cells, but only produced 400,000 that day, giving me a total of 900,000. The facility was closed on Saturday, but open Sunday. On Sunday, I was able to produce only 200,000 stem cells, totaling 1.1 million. I was told that I can only collect for 5 days without taking a break, and after doing the math, it was apparent that I was not going to be able to collect enough cells. On Monday, July 27, my doctors decided to stop collecting. I was told that I needed to take at least a 7 – 10 day break to recover, and that they would attempt to collect again using a different stimulating drug called AMD. They also had trouble during collection finding veins that would hold up to the oversized needles. For the next round of collection, they have decided to replace the central line in my chest with a larger version. For this, they are scheduling surgery and I will, hopefully, only spend one night in the hospital. In the meantime, we are waiting for insurance approval for the AMD and to be scheduled for surgery.
The problem that all of this presents is that I have now been off of chemotherapy for almost a month. I am nervous to go without treatment for so long before entering the 8H9 clinical trial. We are sitting on pins and needles waiting for a phone call from New York, which they tell me will be on Wednesday, August 5. If all goes as planned, I will return to New York for surgery and another collection starting Tuesday, August 11. If my insurance decided not to cover the new drug or waits too long to do so, I will begin chemotherapy on Monday August 10.
This is essentially a repeat of the last post, with a little bit of added drama. As always, I am sorry it took so long to update, but we have been waiting for weeks on these answers, which we still don’t have. Thanks again for your thoughts, prayers, and cards. Thank you, also, to those of you who wished me a happy birthday. I was able to celebrate with Marissa and her mother, Christine, in Knoxville, before returning home on Saturday. I will make a short post, hopefully by the end of this week, when a decision is made about my future schedule.
Before the scans, beginning June 8, I began my 15th round of chemotherapy. It was very uneventful, as are most rounds recently, which is a very good thing. My 16th cycle of chemotherapy began on June 29. It too was uneventful. My scans, normally scheduled during my off week between cycles, were not scheduled until July 22. The delay was necessary because my scans were scheduled along with my stem cell harvest to prepare for the 8h9 clinical trial. Because I have had so much chemotherapy, my body is not able to produce enough stem cells for collection. To get around this, I was given a drug called Neupogen (G-CSF). This drug can be given at home, but unfortunately, it is an injectable, meaning Marissa had to give me multiple shots in each arm for 8 days. She did a fantastic job, but she was not thrilled.
My stem cell collection began on July 23. To collect the cells, an oversized IV line is placed in each arm. Blood is drawn out of the body from one arm, run through a centrifuge machine, and then given back through the other arm. Although very little blood is out of the body at one time, over the 5 hour process, the entire volume of the body’s blood is removed three times. Some patients are able to collect their required amount of cells in a single collection. Unfortunately, I was unable do this. I was told that I needed to collect a total of 7 million stem cells. On the first day, I was only able to collect 500,000 cells, or 0.5 million. I went back on Friday, July 24, hoping to collect more cells, but only produced 400,000 that day, giving me a total of 900,000. The facility was closed on Saturday, but open Sunday. On Sunday, I was able to produce only 200,000 stem cells, totaling 1.1 million. I was told that I can only collect for 5 days without taking a break, and after doing the math, it was apparent that I was not going to be able to collect enough cells. On Monday, July 27, my doctors decided to stop collecting. I was told that I needed to take at least a 7 – 10 day break to recover, and that they would attempt to collect again using a different stimulating drug called AMD. They also had trouble during collection finding veins that would hold up to the oversized needles. For the next round of collection, they have decided to replace the central line in my chest with a larger version. For this, they are scheduling surgery and I will, hopefully, only spend one night in the hospital. In the meantime, we are waiting for insurance approval for the AMD and to be scheduled for surgery.
The problem that all of this presents is that I have now been off of chemotherapy for almost a month. I am nervous to go without treatment for so long before entering the 8H9 clinical trial. We are sitting on pins and needles waiting for a phone call from New York, which they tell me will be on Wednesday, August 5. If all goes as planned, I will return to New York for surgery and another collection starting Tuesday, August 11. If my insurance decided not to cover the new drug or waits too long to do so, I will begin chemotherapy on Monday August 10.
This is essentially a repeat of the last post, with a little bit of added drama. As always, I am sorry it took so long to update, but we have been waiting for weeks on these answers, which we still don’t have. Thanks again for your thoughts, prayers, and cards. Thank you, also, to those of you who wished me a happy birthday. I was able to celebrate with Marissa and her mother, Christine, in Knoxville, before returning home on Saturday. I will make a short post, hopefully by the end of this week, when a decision is made about my future schedule.
Tuesday, June 16, 2009
Clean Scans!
Today is June 17, 2009, time for another long overdue update. The primary objective for our last trip to New York (the week of May 25) was for my latest set of scans. If you will remember from the previous scans (April 13), the results were inconclusive, showing a few areas of “thickening” and also a 1cm spot in my abdomen. I was told this was area for concern but not alarm and the next set of scans should clarify the results.
Fast forward to the May 27th set of scans. The results really were exactly what we were hoping for. The areas of “thickening” were still present, but unchanged in size and location. This reinforces the idea that these areas are just scar tissue left over from surgery and may never go away. The 1cm spot that had caused all of the concern on the last scan was completely gone. For all practical purposes, “Clean Scans!”
The next big step in treatment for me is an upcoming clinical trial in New York called 8h9. It is a phase one clinical trial that is still in the approval stages, but years of research shows lots of promise as a wonderful treatment for my cancer. Because it is a Stage 1 trial and still under development, most of the details regarding the treatment are still under tight wraps. What I have been told is that it “should” be available by the end of summer and treatment will last approximately 3 to 4 weeks. Dr. Chou has convinced me to stay on my current regimen of chemotherapy until the trial is available. After the trial, assuming things go as planned, I would be finished with formal treatment. At that point I plan to start the NeoPlas alternative treatment regimen that would hopefully allow me to return to a normal lifestyle.
As you can imagine, I have had a lot of questions lately regarding my treatment choices. Understandably so, and I am not sure I understand them enough myself to explain, but I will try to do so without getting too technical. Most cancers have what are referred to as tumor markers. This means that with relatively simple tests (blood tests, etc), the amount of cancer activity in the body can be monitored. Unfortunately, I was blessed with a cancer for which no tumor maker has yet been discovered. What this means is that I will never know if all of the cancer in my body is gone. My tumors can only be seen when they become large enough to show up on a CT scan and/or PET scan. Of course, at this point they are already millions, if not billions, of cells. My cancer has also proven that it can double its tumor size in as little as three weeks, growing exponentially.
In short, because I will never be able to prove that I don’t have any remaining cancer cells, I will never be considered to be in “remission”. The term that is used for my cancer is N.E.D., or No Evidence of Disease. All of this combines to make future treatment options very difficult to decide upon, but the general consensus seems to be to take treatment as long as you can tolerate it. I’m almost to that point.
As far as the rest of the update, the last trip to New York was relatively uneventful. The scans were preformed on Wednesday, May 27th. The results came in for the CT scan on Thursday and PET results on Friday. We left New York on Thursday with a slight detour. We headed for Toledo, OH for a visit with Marissa’s grandmother. She had been admitted to the hospital with pneumonia, but is now doing much better. We arrived back in Knoxville late Saturday evening to pick up our dogs.
We learned on Friday that there is a national oncology conference held annually at this time of year, despite my scheduled chemotherapy during the conference. I was told that I had no choice but to delay the schedule and start my next round on Monday, June 8th.
Since my side effects from the previous rounds were relatively mild and controlled, there wasn’t much to discuss with the doctor. I was still having some nosebleeds, so the Avastin was reduced an additional 25%, for a total of 50% dose. I have also been having frequent headaches, so I had an MRI to check for internal bleeding. That test was performed on June 3rd and only a sinus infection showed up on the scan. Also, I had developed a painful rash on the trip back from New York. My first chance to see the doctor about it was June 2nd, about 5 days after I noticed the rash. She diagnosed it at a glance as shingles. Fortunately, they were not as painful for me as I had been lead to believe and have since all but disappeared.
Since then it’s just been back to the same old chemo routine. Last week I had a surprising amount of nausea, but nothing I haven’t been through before. Overall, things really couldn’t be better, considering… Every doctor’s report is better than the previous report. Thanks again for your continued prayers and well wishes. I would not be where I am without them. The next set of scans is tentatively set for the week of July 13th in New York.
Fast forward to the May 27th set of scans. The results really were exactly what we were hoping for. The areas of “thickening” were still present, but unchanged in size and location. This reinforces the idea that these areas are just scar tissue left over from surgery and may never go away. The 1cm spot that had caused all of the concern on the last scan was completely gone. For all practical purposes, “Clean Scans!”
The next big step in treatment for me is an upcoming clinical trial in New York called 8h9. It is a phase one clinical trial that is still in the approval stages, but years of research shows lots of promise as a wonderful treatment for my cancer. Because it is a Stage 1 trial and still under development, most of the details regarding the treatment are still under tight wraps. What I have been told is that it “should” be available by the end of summer and treatment will last approximately 3 to 4 weeks. Dr. Chou has convinced me to stay on my current regimen of chemotherapy until the trial is available. After the trial, assuming things go as planned, I would be finished with formal treatment. At that point I plan to start the NeoPlas alternative treatment regimen that would hopefully allow me to return to a normal lifestyle.
As you can imagine, I have had a lot of questions lately regarding my treatment choices. Understandably so, and I am not sure I understand them enough myself to explain, but I will try to do so without getting too technical. Most cancers have what are referred to as tumor markers. This means that with relatively simple tests (blood tests, etc), the amount of cancer activity in the body can be monitored. Unfortunately, I was blessed with a cancer for which no tumor maker has yet been discovered. What this means is that I will never know if all of the cancer in my body is gone. My tumors can only be seen when they become large enough to show up on a CT scan and/or PET scan. Of course, at this point they are already millions, if not billions, of cells. My cancer has also proven that it can double its tumor size in as little as three weeks, growing exponentially.
In short, because I will never be able to prove that I don’t have any remaining cancer cells, I will never be considered to be in “remission”. The term that is used for my cancer is N.E.D., or No Evidence of Disease. All of this combines to make future treatment options very difficult to decide upon, but the general consensus seems to be to take treatment as long as you can tolerate it. I’m almost to that point.
As far as the rest of the update, the last trip to New York was relatively uneventful. The scans were preformed on Wednesday, May 27th. The results came in for the CT scan on Thursday and PET results on Friday. We left New York on Thursday with a slight detour. We headed for Toledo, OH for a visit with Marissa’s grandmother. She had been admitted to the hospital with pneumonia, but is now doing much better. We arrived back in Knoxville late Saturday evening to pick up our dogs.
We learned on Friday that there is a national oncology conference held annually at this time of year, despite my scheduled chemotherapy during the conference. I was told that I had no choice but to delay the schedule and start my next round on Monday, June 8th.
Since my side effects from the previous rounds were relatively mild and controlled, there wasn’t much to discuss with the doctor. I was still having some nosebleeds, so the Avastin was reduced an additional 25%, for a total of 50% dose. I have also been having frequent headaches, so I had an MRI to check for internal bleeding. That test was performed on June 3rd and only a sinus infection showed up on the scan. Also, I had developed a painful rash on the trip back from New York. My first chance to see the doctor about it was June 2nd, about 5 days after I noticed the rash. She diagnosed it at a glance as shingles. Fortunately, they were not as painful for me as I had been lead to believe and have since all but disappeared.
Since then it’s just been back to the same old chemo routine. Last week I had a surprising amount of nausea, but nothing I haven’t been through before. Overall, things really couldn’t be better, considering… Every doctor’s report is better than the previous report. Thanks again for your continued prayers and well wishes. I would not be where I am without them. The next set of scans is tentatively set for the week of July 13th in New York.
Thursday, May 21, 2009
NY Scans Next Week
So as not to let too much time elapse between posts, I will give a quick update on Bradley. We left off on Monday, April 27 with Bradley on his second week of chemo. Bradley tolerated the rest of his chemo very well that week. Decreasing the dose of the Irinotecan seemed to help immensely. For Bradley’s “off” week we went to Santa Rosa Beach in Florida. My family rented a four bedroom condo for us all to be able to vacation together. My mom, Meaghan, Nathan, Jack, Maison, Ashleigh, Owen, and Ethan all stayed at the condo. It was definitely an interesting week. Most of the little ones were sick, Nathan got sick during the week, and I did also. Bradley felt pretty well the majority of the week. He didn’t feel wonderful, but he did not feel horrible either. All in all it was a great vacation, and we were able to enjoy the week. We returned home Friday, May 8. That night Bradley’s parents came for a visit. It was Bradley’s dad’s birthday and that Sunday was Mother’s Day. We wanted to be able to celebrate with his parents so they drove down for the weekend. They arrived late Friday night and had to leave Sunday evening. It was a short trip but we were able to get a couple of things done around our house with their help, and we had a very nice visit. Sunday, May 10 was not only Mother’s Day but also Ethan’s Baptism. Visiting with our families over the last week kept us very busy, but we really enjoyed every minute.
Monday, May 11 Bradley began his 14th total round of chemotherapy. This is his 4th round of Irinotecan, Temodar, and Avastin since his surgery in February. This dose was also to be decreased to help with Bradley’s side effects. This round the Avastin was also decreased by 25% as a precautionary measure. Bradley was having some mild nosebleeds. The Avastin can cause internal bleeding, that is why his dose was decreased to play it safe. Bradley has felt pretty well. His main side effects are still pretty intense stomach aches and also insomnia. We have filled 3 different prescriptions to try to help Bradley get a good night’s sleep and unfortunately none of them really help. It started off with him not being able to get to sleep until 3am or so, and now it has advanced to not sleeping all night. The past two nights he was awake all night. Hopefully as suddenly as this insomnia started it will also end.
Today is Thursday, May 21 and tomorrow is Bradley’s last day of chemo for this round. We have been going in to receive his chemo around 1pm. This chemo only takes about an hour and a half to get (of course with waiting for the nurses it turns into more like 3), but it has been nice going in late since Bradley hasn’t been sleeping well. When he finally does fall asleep in the morning he has a couple of hours before he has to get up and go to treatment. It has also been better going in later because it has allowed me to watch Jack several days this week.
This Saturday, May 23 we are headed to Knoxville, TN to my mom’s house. We are staying until Tuesday morning then we are headed back to New York for scans. The dogs are staying at my mom’s house while we are away.
Bradley’s scans are scheduled for 5pm on Wednesday, May 27. I am not sure if we will meet with the doctor on Thursday or Friday for results. These scans are very important. They will tell us if the questionable spots from the last scan are still there and if they are tumor. Of course we are praying and believing that these spots will be gone and are not tumor. We do not have any chemo scheduled for now, as we are awaiting the results of these scans. If all goes as planned when we return home instead of starting chemo on that Monday, Bradley will begin the Lovastatin/Interferon treatment from the doctor in Nashville. This will really help in so many ways. It will allow us to be at home and rest for more than a week without running to chemo everyday. Of course it will alleviate the side effect’s from chemo, though it presents side effects of its own, not as harsh though. It will really be the start of regaining Bradley’s physical strength and allowing us to slowly start getting back to normal life, while still be medically cautious. These are our hopes, our plans, and what we are praying for.
Monday, May 11 Bradley began his 14th total round of chemotherapy. This is his 4th round of Irinotecan, Temodar, and Avastin since his surgery in February. This dose was also to be decreased to help with Bradley’s side effects. This round the Avastin was also decreased by 25% as a precautionary measure. Bradley was having some mild nosebleeds. The Avastin can cause internal bleeding, that is why his dose was decreased to play it safe. Bradley has felt pretty well. His main side effects are still pretty intense stomach aches and also insomnia. We have filled 3 different prescriptions to try to help Bradley get a good night’s sleep and unfortunately none of them really help. It started off with him not being able to get to sleep until 3am or so, and now it has advanced to not sleeping all night. The past two nights he was awake all night. Hopefully as suddenly as this insomnia started it will also end.
Today is Thursday, May 21 and tomorrow is Bradley’s last day of chemo for this round. We have been going in to receive his chemo around 1pm. This chemo only takes about an hour and a half to get (of course with waiting for the nurses it turns into more like 3), but it has been nice going in late since Bradley hasn’t been sleeping well. When he finally does fall asleep in the morning he has a couple of hours before he has to get up and go to treatment. It has also been better going in later because it has allowed me to watch Jack several days this week.
This Saturday, May 23 we are headed to Knoxville, TN to my mom’s house. We are staying until Tuesday morning then we are headed back to New York for scans. The dogs are staying at my mom’s house while we are away.
Bradley’s scans are scheduled for 5pm on Wednesday, May 27. I am not sure if we will meet with the doctor on Thursday or Friday for results. These scans are very important. They will tell us if the questionable spots from the last scan are still there and if they are tumor. Of course we are praying and believing that these spots will be gone and are not tumor. We do not have any chemo scheduled for now, as we are awaiting the results of these scans. If all goes as planned when we return home instead of starting chemo on that Monday, Bradley will begin the Lovastatin/Interferon treatment from the doctor in Nashville. This will really help in so many ways. It will allow us to be at home and rest for more than a week without running to chemo everyday. Of course it will alleviate the side effect’s from chemo, though it presents side effects of its own, not as harsh though. It will really be the start of regaining Bradley’s physical strength and allowing us to slowly start getting back to normal life, while still be medically cautious. These are our hopes, our plans, and what we are praying for.
Monday, April 27, 2009
Here, There, and Everywhere
Were you beginning to think we were never going to post again? In order to get an update posted I will again be writing in place of Bradley. Our last post ended with Bradley’s 12th round of chemo, his 2nd round with the Irinotecan and Temodar. Unfortunately Bradley’s off week from chemo was still accompanied by severe cramping and feeling terrible. Bradley had a list about a mile long that he was experiencing as side effects from the chemo. I called Dr. D’Amato’s nurse at Emory to see if his side effects could be better controlled. Not only was Bradley feeling very badly, but his morale was also starting to suffer. After 12 rounds of chemo and a major surgery, he was just feeling as if he couldn’t handle anymore chemo and feeling so sick constantly. I also mentioned this to Dr. D’Amato’s nurse along with the fact that his weight was still dropping. Unfortunately, Dr. D’Amato’s office was not very concerned about Bradley. Their lack of concern made me even more concerned and overcome with helplessness. I decided to call Dr. Chou in New York and explain what was going on with Bradley.
I left a message with the receptionist and unlike at Emory, Dr. Chou personally called me back. Keep in mind he was not able to personally examine Bradley, but he too was concerned by the symptoms and feelings Bradley was having. Dr. Chou stressed the last thing they want is for Bradley to stop treatment because his chemo side effects cannot be controlled. I told him Bradley wanted to take an extra week off to try and recover his strength and appetite. I also asked him if there was any way we could move Bradley’s scans up from their scheduled date of April 28. I explained that depending on the scan results Bradley may decide to stop the chemo and continue with a less harsh treatment (more later in post on this). He agreed that Bradley should definitely take another week off and that his scans would be rescheduled sooner. By the end of the day, his scans had been rescheduled for Monday, April 13 the day after Easter. This left us with one week before we had to leave for NY.
Friday, April 3 Bradley had begun to feel slightly better, and I know we were both getting tired of sitting in our house day after day. We decided to go to my mom’s in Knoxville, TN until Monday. Gary was home for the week and Bradley and I had a great visit. Gary’s kids and their families came over for an early Easter dinner and egg hunt. We enjoyed many homemade meals, and Bradley was steadily regaining his appetite.
On Monday, April 6 we left Knoxville and continued on the rest of our week long adventure. We were headed for Newbern, TN where Bradley’s parents live. We arrived around 8 pm to find Bradley’s entire family gathered to welcome him home. We’re not only talking about brother and sisters and their families but aunts, uncles, cousins, everybody. Bradley was so excited, and it was really great that everyone came out to see him. Bradley and I hadn’t been to Newbern in over a year, since before his diagnosis. We had so much fun catching up with everyone.
Tuesday we just hung around his parent’s house and rested. We were still tired from the drive and Bradley’s welcome home party. Later that night Frankie, Doris, Dawson, Hunter, Lori, Steve, Grammy and our friends Chad and Jessica all came over for homemade pizza. We enjoyed more great food and Bradley was now even asking for “seconds”.
Wednesday Bradley woke up at 6:30 am to go Crappie fishing on Reelfoot Lake with our friend Chris. Chris bought a boat several months ago, and Bradley could not wait to get out on it. They did not have much luck with the Crappie, but Bradley felt well enough to stay out until the late afternoon. It was such an improvement from the week before, and I was thrilled to see him feeling well enough to enjoy getting out. Later that night we went to church with Grammy. Her church is small on people, but huge on love and prayer. Many, many members send Bradley cards weekly even though they had never met Bradley. Bradley really enjoys receiving these cards regularly, we know not faces but names very well. We really enjoyed visiting Lake Road Baptist Church and finally being able to put a face to a name. We felt incredibly welcome and Bradley was really honored for the wonderful prayers the congregation prayed for him and us. We were both so happy we could visit with everyone.
Thursday Bradley and I took Paddington and Yogi to a local groomer we like to get their spring ‘do’s. For dinner that night we went to Chris and Amanda’s house with Chad and Jessica. Chris grilled deer tenderloin and again Bradley filled his plate several times. We had so much fun hanging out with all of them. It was such a nice escape from what we are going through now, and it was a great reminder that life will be “normal” again soon.
Friday around lunchtime we packed up the car and returned home. We had such a busy, but WONDERFUL week. It was exactly what we both needed. Spur of the moment trips are always fun, and I am glad despite the short notice we were able to visit with all of the family and friends. Hopefully that visit will be the start of more frequent visits.
Saturday, April 11 my family celebrated Easter dinner early so Bradley and I could enjoy it too. There was another Easter egg hunt and excited nephews and of course, more great food. Bradley had gained back about 7 lbs. by this point.
Sunday, April 12, Easter Sunday we left for our 14 hour drive to NY. We drove about 9 hours so we would only have 5 to go the next day. We were upset we did not even get to attend an Easter Church Service, but we pleased the scans were able to be moved up.
Monday, April 13 was scan day. We woke up and drove about 5 hours plus one hour of sitting in traffic. It was a good thing we left early enough to make it to his scans on time. We were on time, though not by much. We had to drive straight to the hospital instead of dropping off our luggage first. Bradley’s PET Scan was scheduled for 4:15 that afternoon. He had to be fasting, so neither of us had eaten all day. His scan lasted 3 hours. Afterwards Bradley told me of the ordeal he had to go through. Apparently, the PET scan portion of the test went fine. However, they always do a CAT Scan simultaneously. Before this was performed more contrast had to be given to Bradley in his IV line. There ended up being a leak in the tubing and all of the contrast went all over the floor. Bradley had to lay there about an extra hour while they called in the Radiologist to see if the scans needed to be redone. The Radiologist believed he had gotten “good enough” images with the contrast that was still in Bradley’s system from the PET scan. It was also decided that there was too much radiation exposure for Bradley to repeat them that same day. We left around 7pm and went to drop our stuff off at The Ronald McDonald House, where we were staying again. We had a very quick dinner and went right to bed out of pure exhaustion.
Tuesday, April 14 we woke up to meet with Dr. LaQuaglia and Dr. Chou to receive scan results. Dr. Chou found us in the waiting room only to tell poor Bradley that he would have to repeat the CAT scan that afternoon. Anticipating this, we had not eaten that morning. So, more fasting and more gross contrast drink. This pushed not only the results back a day but also our departure and follow up plans.
Wednesday, April 15 we arrived for our 1pm appointment time. After waiting and more waiting, we finally received the results. The PET scan showed a small spot in Bradley’s colon. The CAT scan measured this spot to be about 1cm. Dr. LaQuaglia, Dr. Chou, and the Radiologist all discussed the results and decided that while it may be a small tumor, it was more likely left over scar tissue or inflammation from surgery. PET Scans can show infection, inflammation, all sorts of things really that may be nothing. It was reassuring having Dr. LaQuaglia there to review the results with us and to show us the scans. This area will be watched closely, but it did appear in an area where Dr. LaQuaglia had done some work. It was decided that Bradley would do 2 more rounds of Irinotecan, Temodar, and Avastin. Though the Irinotecan would be given at half dose to try to cut down on side effects. We will return to NY after those rounds for another set of scans. They are confidant the spot will be gone, and we are praying this to be the case. We got out of his office after 5pm, packed our bags and headed out. We were off to Nashville, TN.
After a long drive and some overnight stops, we arrived in Nashville. Bradley’s dad’s old college roommate is the General Manager at Hampton Inn there in Nashville. He was gracious enough to give us a room for the night, which really helped us out. Why were we in Nashville you may wonder? I believe in the past Bradley described the forum we are on for Desmoplastic Small Round Cell Tumor, (DSRCT), patients. We have learned so much from everyone on there. One patient who is very active in his care and researching better alternatives to chemo, receives treatment from a doctor in Nashville. Dr. Cantrell, is the founder of NeoPlas Innovation. This is a treatment consisting of Interferon injections combined with oral Lovastatin. These are two FDA approved drugs used for two different purposes. Lovastatin is a cholesterol drug. Dr. Cantrell has combined these two drugs and is studying their response to certain cancers. Thus far, he has had a great success in many patients. He is working on getting a patent for this treatment. Our friend from the forum, is having great results from it. He stopped doing chemotherapy and started using this product about a year ago. He had several small tumors located in his abdomen and this treatment has not taken these tumors away BUT they have not grown either. That is wonderful news considering the aggressiveness of DSRCT. Our friend has been able to essentially “manage” his disease while living a pretty close to normal life. Of course these drugs, as all drugs do, have side effects but compared to chemotherapy and its toxicity and side effects ,it is a no brainer. Our friend has also done extensive research on alternative therapies and supplements. He has come up with a daily supplement regimen that he has been using for over a year also. He has kindly agreed to customize a supplement therapy and regimen for Bradley. Please understand, Bradley is not stopping chemo treatments. However, there is a point when your choice for maintenance options becomes limited. This cancer has an extremely high recurrence rate. Many patients after chemo sit back and do nothing. The supplements may or may not truly help to keep the cancer at bay, but at least we will have peace of mind that following chemo we did not just sit by and do no treatment. As long as these supplements do not cause harm, then why not try them when treatment options are so limited? Our friend has been told by 3 different doctors that if they were in his shoes, they would be doing the exact same thing. We also presented Dr. Chou with the research for the NeoPlas treatment. He reviewed it all and told us that everything about it made sense. He was very excited that we were going to learn more about it. So in short, in Nashville, we learned about the treatment and were given the necessary training and prescriptions. Bradley may begin it at any time, even during chemo. However, I think he is waiting to finish these two rounds of chemo and get his scans back. I know we are both praying that they come back clean so he can begin a less harsh treatment with a clean slate.
We returned home late Friday night. I must add that yes I despise flying, but I am at the point where I am beginning to despise driving. In 2 weeks time we drove here, there, and everywhere. The weather was nice over the weekend, and we worked a little bit around our yard. Monday, April 21 Bradley began his 3rd round of this chemo. As planned the Irinotecan dose was cut in half. Dr. D’Amato thought this would help greatly with Bradley’s side effects. She said that Bradley’s original dose was incredibly high for an adult. She said that is a pediatric dose (Dr. Chou is a pediatric oncologist). Children can handle higher doses since they metabolize things quicker. We spoke to her in depth about future treatment options. It is very frustrating how every doctor, everywhere we go,tells us something different. For instance she knows about upcoming potential treatments locally, not in NY. NY knows about upcoming potential treatments there. We are at an advantage because we travel, thus we get the benefit of hearing about more upcoming treatments. Nonetheless, it is still frustrating because no one in your care is really on the same page.
Today is Monday, April 27. This is his second week of treatment and next week he is off. While he hasn’t been feeling great, he seems to be doing slightly better than previous rounds. Next week will be the true test to see how this new dose is working as it is always his really “bad” week.
I apologize for the world’s longest post. Now everyone is up to speed with all of the decisions we are facing. Please continue to pray for Bradley, that his scans come back clean and that he makes the best decision possible regarding future treatments.
Another little tidbit of information-Bradley is now weighing 157 lbs., he is down about 16 lbs. from before surgery, but it is better than 25 lbs. Also, he is beginning to grow his hair back. His eyebrows and eyelashes are fully in. He is really looking fantastic!
I left a message with the receptionist and unlike at Emory, Dr. Chou personally called me back. Keep in mind he was not able to personally examine Bradley, but he too was concerned by the symptoms and feelings Bradley was having. Dr. Chou stressed the last thing they want is for Bradley to stop treatment because his chemo side effects cannot be controlled. I told him Bradley wanted to take an extra week off to try and recover his strength and appetite. I also asked him if there was any way we could move Bradley’s scans up from their scheduled date of April 28. I explained that depending on the scan results Bradley may decide to stop the chemo and continue with a less harsh treatment (more later in post on this). He agreed that Bradley should definitely take another week off and that his scans would be rescheduled sooner. By the end of the day, his scans had been rescheduled for Monday, April 13 the day after Easter. This left us with one week before we had to leave for NY.
Friday, April 3 Bradley had begun to feel slightly better, and I know we were both getting tired of sitting in our house day after day. We decided to go to my mom’s in Knoxville, TN until Monday. Gary was home for the week and Bradley and I had a great visit. Gary’s kids and their families came over for an early Easter dinner and egg hunt. We enjoyed many homemade meals, and Bradley was steadily regaining his appetite.
On Monday, April 6 we left Knoxville and continued on the rest of our week long adventure. We were headed for Newbern, TN where Bradley’s parents live. We arrived around 8 pm to find Bradley’s entire family gathered to welcome him home. We’re not only talking about brother and sisters and their families but aunts, uncles, cousins, everybody. Bradley was so excited, and it was really great that everyone came out to see him. Bradley and I hadn’t been to Newbern in over a year, since before his diagnosis. We had so much fun catching up with everyone.
Tuesday we just hung around his parent’s house and rested. We were still tired from the drive and Bradley’s welcome home party. Later that night Frankie, Doris, Dawson, Hunter, Lori, Steve, Grammy and our friends Chad and Jessica all came over for homemade pizza. We enjoyed more great food and Bradley was now even asking for “seconds”.
Wednesday Bradley woke up at 6:30 am to go Crappie fishing on Reelfoot Lake with our friend Chris. Chris bought a boat several months ago, and Bradley could not wait to get out on it. They did not have much luck with the Crappie, but Bradley felt well enough to stay out until the late afternoon. It was such an improvement from the week before, and I was thrilled to see him feeling well enough to enjoy getting out. Later that night we went to church with Grammy. Her church is small on people, but huge on love and prayer. Many, many members send Bradley cards weekly even though they had never met Bradley. Bradley really enjoys receiving these cards regularly, we know not faces but names very well. We really enjoyed visiting Lake Road Baptist Church and finally being able to put a face to a name. We felt incredibly welcome and Bradley was really honored for the wonderful prayers the congregation prayed for him and us. We were both so happy we could visit with everyone.
Thursday Bradley and I took Paddington and Yogi to a local groomer we like to get their spring ‘do’s. For dinner that night we went to Chris and Amanda’s house with Chad and Jessica. Chris grilled deer tenderloin and again Bradley filled his plate several times. We had so much fun hanging out with all of them. It was such a nice escape from what we are going through now, and it was a great reminder that life will be “normal” again soon.
Friday around lunchtime we packed up the car and returned home. We had such a busy, but WONDERFUL week. It was exactly what we both needed. Spur of the moment trips are always fun, and I am glad despite the short notice we were able to visit with all of the family and friends. Hopefully that visit will be the start of more frequent visits.
Saturday, April 11 my family celebrated Easter dinner early so Bradley and I could enjoy it too. There was another Easter egg hunt and excited nephews and of course, more great food. Bradley had gained back about 7 lbs. by this point.
Sunday, April 12, Easter Sunday we left for our 14 hour drive to NY. We drove about 9 hours so we would only have 5 to go the next day. We were upset we did not even get to attend an Easter Church Service, but we pleased the scans were able to be moved up.
Monday, April 13 was scan day. We woke up and drove about 5 hours plus one hour of sitting in traffic. It was a good thing we left early enough to make it to his scans on time. We were on time, though not by much. We had to drive straight to the hospital instead of dropping off our luggage first. Bradley’s PET Scan was scheduled for 4:15 that afternoon. He had to be fasting, so neither of us had eaten all day. His scan lasted 3 hours. Afterwards Bradley told me of the ordeal he had to go through. Apparently, the PET scan portion of the test went fine. However, they always do a CAT Scan simultaneously. Before this was performed more contrast had to be given to Bradley in his IV line. There ended up being a leak in the tubing and all of the contrast went all over the floor. Bradley had to lay there about an extra hour while they called in the Radiologist to see if the scans needed to be redone. The Radiologist believed he had gotten “good enough” images with the contrast that was still in Bradley’s system from the PET scan. It was also decided that there was too much radiation exposure for Bradley to repeat them that same day. We left around 7pm and went to drop our stuff off at The Ronald McDonald House, where we were staying again. We had a very quick dinner and went right to bed out of pure exhaustion.
Tuesday, April 14 we woke up to meet with Dr. LaQuaglia and Dr. Chou to receive scan results. Dr. Chou found us in the waiting room only to tell poor Bradley that he would have to repeat the CAT scan that afternoon. Anticipating this, we had not eaten that morning. So, more fasting and more gross contrast drink. This pushed not only the results back a day but also our departure and follow up plans.
Wednesday, April 15 we arrived for our 1pm appointment time. After waiting and more waiting, we finally received the results. The PET scan showed a small spot in Bradley’s colon. The CAT scan measured this spot to be about 1cm. Dr. LaQuaglia, Dr. Chou, and the Radiologist all discussed the results and decided that while it may be a small tumor, it was more likely left over scar tissue or inflammation from surgery. PET Scans can show infection, inflammation, all sorts of things really that may be nothing. It was reassuring having Dr. LaQuaglia there to review the results with us and to show us the scans. This area will be watched closely, but it did appear in an area where Dr. LaQuaglia had done some work. It was decided that Bradley would do 2 more rounds of Irinotecan, Temodar, and Avastin. Though the Irinotecan would be given at half dose to try to cut down on side effects. We will return to NY after those rounds for another set of scans. They are confidant the spot will be gone, and we are praying this to be the case. We got out of his office after 5pm, packed our bags and headed out. We were off to Nashville, TN.
After a long drive and some overnight stops, we arrived in Nashville. Bradley’s dad’s old college roommate is the General Manager at Hampton Inn there in Nashville. He was gracious enough to give us a room for the night, which really helped us out. Why were we in Nashville you may wonder? I believe in the past Bradley described the forum we are on for Desmoplastic Small Round Cell Tumor, (DSRCT), patients. We have learned so much from everyone on there. One patient who is very active in his care and researching better alternatives to chemo, receives treatment from a doctor in Nashville. Dr. Cantrell, is the founder of NeoPlas Innovation. This is a treatment consisting of Interferon injections combined with oral Lovastatin. These are two FDA approved drugs used for two different purposes. Lovastatin is a cholesterol drug. Dr. Cantrell has combined these two drugs and is studying their response to certain cancers. Thus far, he has had a great success in many patients. He is working on getting a patent for this treatment. Our friend from the forum, is having great results from it. He stopped doing chemotherapy and started using this product about a year ago. He had several small tumors located in his abdomen and this treatment has not taken these tumors away BUT they have not grown either. That is wonderful news considering the aggressiveness of DSRCT. Our friend has been able to essentially “manage” his disease while living a pretty close to normal life. Of course these drugs, as all drugs do, have side effects but compared to chemotherapy and its toxicity and side effects ,it is a no brainer. Our friend has also done extensive research on alternative therapies and supplements. He has come up with a daily supplement regimen that he has been using for over a year also. He has kindly agreed to customize a supplement therapy and regimen for Bradley. Please understand, Bradley is not stopping chemo treatments. However, there is a point when your choice for maintenance options becomes limited. This cancer has an extremely high recurrence rate. Many patients after chemo sit back and do nothing. The supplements may or may not truly help to keep the cancer at bay, but at least we will have peace of mind that following chemo we did not just sit by and do no treatment. As long as these supplements do not cause harm, then why not try them when treatment options are so limited? Our friend has been told by 3 different doctors that if they were in his shoes, they would be doing the exact same thing. We also presented Dr. Chou with the research for the NeoPlas treatment. He reviewed it all and told us that everything about it made sense. He was very excited that we were going to learn more about it. So in short, in Nashville, we learned about the treatment and were given the necessary training and prescriptions. Bradley may begin it at any time, even during chemo. However, I think he is waiting to finish these two rounds of chemo and get his scans back. I know we are both praying that they come back clean so he can begin a less harsh treatment with a clean slate.
We returned home late Friday night. I must add that yes I despise flying, but I am at the point where I am beginning to despise driving. In 2 weeks time we drove here, there, and everywhere. The weather was nice over the weekend, and we worked a little bit around our yard. Monday, April 21 Bradley began his 3rd round of this chemo. As planned the Irinotecan dose was cut in half. Dr. D’Amato thought this would help greatly with Bradley’s side effects. She said that Bradley’s original dose was incredibly high for an adult. She said that is a pediatric dose (Dr. Chou is a pediatric oncologist). Children can handle higher doses since they metabolize things quicker. We spoke to her in depth about future treatment options. It is very frustrating how every doctor, everywhere we go,tells us something different. For instance she knows about upcoming potential treatments locally, not in NY. NY knows about upcoming potential treatments there. We are at an advantage because we travel, thus we get the benefit of hearing about more upcoming treatments. Nonetheless, it is still frustrating because no one in your care is really on the same page.
Today is Monday, April 27. This is his second week of treatment and next week he is off. While he hasn’t been feeling great, he seems to be doing slightly better than previous rounds. Next week will be the true test to see how this new dose is working as it is always his really “bad” week.
I apologize for the world’s longest post. Now everyone is up to speed with all of the decisions we are facing. Please continue to pray for Bradley, that his scans come back clean and that he makes the best decision possible regarding future treatments.
Another little tidbit of information-Bradley is now weighing 157 lbs., he is down about 16 lbs. from before surgery, but it is better than 25 lbs. Also, he is beginning to grow his hair back. His eyebrows and eyelashes are fully in. He is really looking fantastic!
Wednesday, March 18, 2009
A Very Rough Week
Bradley finished his first five days of this chemotherapy treatment on Friday, February 26. He had that weekend off from chemo and we were hoping to be able to enjoy New York a little bit. However, Bradley felt very sick and nauseaus all weekend so we stayed in at the Ronald McDonald House.
Monday, March 1 Bradley began his second week of this chemo cycle. The doctors addressed his nausea with multiple anti-nausea medicines, none of which really seemed to work for him.
On Tuesday, March 2 Bradley and I went to see The Lion King on Broadway. Bradley’s chemo nurse knew of our plans for the evening so she gave Bradley about every kind of anti-nausea medicine they have before we left the hospital, hoping he would feel well enough to enjoy it. Thankfully, Bradley felt well, and we had a very good time at the show. The masks and costumes were amazing. We were so happy we chose The Lion King, it was very neat and entertaining.
Bradley finished out the rest of his chemo week with more nausea. Also during the week Manhattan received 4-5 inches of snow. Bradley was so excited by this, and he kept hoping for more snow. It did not stay pretty for long with all of the taxi cabs on the roads the white snow quickly turned to black slush. Bradley received the “ok” to leave on Friday afternoon since all of his blood counts were holding up well.
Saturday, March 6 we woke up early to begin washing our linens at The Ronald McDonald House and cleaning our room. The guest is responsible for all of the room cleaning prior to check out at the house. We finally started out at about 10:30 am for our long drive home. Poor Bradley delayed his morning dose of pain medicine in order to drive us out of New York City. I guess in the long run this probably caused him less pain than dealing with me trying to maneuver us out of the crazy city. So after about 25 minutes I took over. Bradley routed us home differently. On our drive to New York we faced multiple toll roads. We are not talking 50 cent tolls either, rather 8 dollars and up per toll. Our drive home was much more scenic. We drove through the most beautiful farmland in New Jersey and Pennsylvania while saving about 50 dollars in tolls. The downside to this drive was a lot of it was two lane highways that were very bumpy and full of pot holes, something you try to avoid with someone who just had a major surgery. We stopped at about 7:30 pm for the night in Waynesboro, Virginia. We grabbed a very quick dinner, Bradley and I were both very, very tired.
We returned home at about 6:30 pm Sunday, March 7. Our dogs were home to greet us, and it felt great to be home again. Bradley was feeling good and wanted to go to the grocery store. So after spending all day in the car, we got back in the car and went grocery shopping. We got back well after dark, at about 8:30pm, to find we had surprise visitors. Meaghan and Jack had come to visit us and welcome us home. We enjoyed visiting with them for awhile, but again we were tired. It had been a long, full day.
Monday, March 8 Bradley started feeling very, very nauseaus. He also had severe abdominal cramping, another symptom of the chemotherapy. He was in a lot of pain due to the cramping and could not get comfortable during the day, nor sleep at night. This continued into Tuesday. I called his oncologist in NY. They said it was completely normal, and that Bradley was having a delayed reaction to the chemo, which is common. They instructed him to begin talking his pain medicine, left over from his surgery, to try to lessen his pain from cramping. They said if need be he could also double the amount he had been taking. This continued throughout the rest of the week, with his symptoms really not improving from day to day. We only made it to get lab work once during the week instead of twice, but thankfully his labs looked good. While he did feel terrible, at least he did not get his typical low white blood cell count and the neutropenic fever that accompanies it.
On Saturday Bradley was still not feeling well. Keep in mind that this was supposed to be his “good” week to enjoy before he started chemo again. Bradley has also not had much of an appetite throughout all of this. His pre-surgery weight was 173 lbs. and he is now weighing in the high 150’s. He also went from taking no medication, including pain pills, to taking anti-nausea meds and double doses of pain medicine around the clock, which were still not even helping.
Sunday, Bradley began to feel ever so slightly better. Maison, Ashleigh and the boys and Meaghan, Nathan and Jack all came over to visit and just hang out with Bradley. While he was still not feeling well physically, this was important to him emotionally and he really enjoyed the company.
Monday, March 16 Bradley began his 12th round of chemo, his 2nd round on the Irinotecan. We arrived at Emory at 9:30 am for the usual doctor appointment and lab work and mostly waiting around. His chemo drug is infused in only an hour, yet we still did not leave the hospital until 5 pm. It was after 7pm when we finally got back home. It had been a long day and again we were both tired. Oddly enough though on chemo again, Bradley was feeling better than the previous week.
Today is Wednesday, March 18. Bradley is still nauseaus and eating only small meals. Despite all of this he is still feeling better than he was all of last week. I am hoping his “good” week is just that and that he is able to enjoy feeling well for a change. We are thinking that maybe he felt so bad because he started chemo so soon after surgery, only 1 week, and that maybe he needed more time to recover his strength and his appetite. As yuck as Bradley is feeling now, we look back and are very thankful for how well he felt with all of that high dose chemo. He truly had very few side effects from all of those rounds, and we are reminded of how fortunate he was. Hopefully very soon Bradley will feel well enough to resume writing future posts.
Monday, March 1 Bradley began his second week of this chemo cycle. The doctors addressed his nausea with multiple anti-nausea medicines, none of which really seemed to work for him.
On Tuesday, March 2 Bradley and I went to see The Lion King on Broadway. Bradley’s chemo nurse knew of our plans for the evening so she gave Bradley about every kind of anti-nausea medicine they have before we left the hospital, hoping he would feel well enough to enjoy it. Thankfully, Bradley felt well, and we had a very good time at the show. The masks and costumes were amazing. We were so happy we chose The Lion King, it was very neat and entertaining.
Bradley finished out the rest of his chemo week with more nausea. Also during the week Manhattan received 4-5 inches of snow. Bradley was so excited by this, and he kept hoping for more snow. It did not stay pretty for long with all of the taxi cabs on the roads the white snow quickly turned to black slush. Bradley received the “ok” to leave on Friday afternoon since all of his blood counts were holding up well.
Saturday, March 6 we woke up early to begin washing our linens at The Ronald McDonald House and cleaning our room. The guest is responsible for all of the room cleaning prior to check out at the house. We finally started out at about 10:30 am for our long drive home. Poor Bradley delayed his morning dose of pain medicine in order to drive us out of New York City. I guess in the long run this probably caused him less pain than dealing with me trying to maneuver us out of the crazy city. So after about 25 minutes I took over. Bradley routed us home differently. On our drive to New York we faced multiple toll roads. We are not talking 50 cent tolls either, rather 8 dollars and up per toll. Our drive home was much more scenic. We drove through the most beautiful farmland in New Jersey and Pennsylvania while saving about 50 dollars in tolls. The downside to this drive was a lot of it was two lane highways that were very bumpy and full of pot holes, something you try to avoid with someone who just had a major surgery. We stopped at about 7:30 pm for the night in Waynesboro, Virginia. We grabbed a very quick dinner, Bradley and I were both very, very tired.
We returned home at about 6:30 pm Sunday, March 7. Our dogs were home to greet us, and it felt great to be home again. Bradley was feeling good and wanted to go to the grocery store. So after spending all day in the car, we got back in the car and went grocery shopping. We got back well after dark, at about 8:30pm, to find we had surprise visitors. Meaghan and Jack had come to visit us and welcome us home. We enjoyed visiting with them for awhile, but again we were tired. It had been a long, full day.
Monday, March 8 Bradley started feeling very, very nauseaus. He also had severe abdominal cramping, another symptom of the chemotherapy. He was in a lot of pain due to the cramping and could not get comfortable during the day, nor sleep at night. This continued into Tuesday. I called his oncologist in NY. They said it was completely normal, and that Bradley was having a delayed reaction to the chemo, which is common. They instructed him to begin talking his pain medicine, left over from his surgery, to try to lessen his pain from cramping. They said if need be he could also double the amount he had been taking. This continued throughout the rest of the week, with his symptoms really not improving from day to day. We only made it to get lab work once during the week instead of twice, but thankfully his labs looked good. While he did feel terrible, at least he did not get his typical low white blood cell count and the neutropenic fever that accompanies it.
On Saturday Bradley was still not feeling well. Keep in mind that this was supposed to be his “good” week to enjoy before he started chemo again. Bradley has also not had much of an appetite throughout all of this. His pre-surgery weight was 173 lbs. and he is now weighing in the high 150’s. He also went from taking no medication, including pain pills, to taking anti-nausea meds and double doses of pain medicine around the clock, which were still not even helping.
Sunday, Bradley began to feel ever so slightly better. Maison, Ashleigh and the boys and Meaghan, Nathan and Jack all came over to visit and just hang out with Bradley. While he was still not feeling well physically, this was important to him emotionally and he really enjoyed the company.
Monday, March 16 Bradley began his 12th round of chemo, his 2nd round on the Irinotecan. We arrived at Emory at 9:30 am for the usual doctor appointment and lab work and mostly waiting around. His chemo drug is infused in only an hour, yet we still did not leave the hospital until 5 pm. It was after 7pm when we finally got back home. It had been a long day and again we were both tired. Oddly enough though on chemo again, Bradley was feeling better than the previous week.
Today is Wednesday, March 18. Bradley is still nauseaus and eating only small meals. Despite all of this he is still feeling better than he was all of last week. I am hoping his “good” week is just that and that he is able to enjoy feeling well for a change. We are thinking that maybe he felt so bad because he started chemo so soon after surgery, only 1 week, and that maybe he needed more time to recover his strength and his appetite. As yuck as Bradley is feeling now, we look back and are very thankful for how well he felt with all of that high dose chemo. He truly had very few side effects from all of those rounds, and we are reminded of how fortunate he was. Hopefully very soon Bradley will feel well enough to resume writing future posts.
Wednesday, February 25, 2009
A New Treatment Plan
Right after my last post on Monday, February 16 Bradley was moved from the step down ICU back to a regular room. He also received a roommate. Thankfully his roommate was also an adult, and aside from having no privacy (for Bradley or his roommate), it really wasn’t that bad. On Tuesday, February 17 Bradley was switched over from IV pain medicine to oral pain medicine. He was experiencing quite a bit of pain from this. We found out that he was on the lowest dose of pain medicine, so they increased it slightly. This seemed to make Bradley much more comfortable. Also on Tuesday, half of Bradley’s staples were removed. Bradley’s parents left to return home on Wednesday.
Thursday, February 19 was a very busy day for Bradley. The rest of his staples were removed. I counted over 70 staples total removed, but lost count after that. We also met with a new oncologist, Dr.Chou. We all discussed what Bradley needed to do next in terms of treatment. It was decided that Bradley will do 6 rounds of a new chemotherapy. This chemo is comprised of 3 drugs, Irinotecan, Temodar, and Avastin. These are not considered “high dose” chemotherapies, and therefore are not supposed to have as many side effects. Though, it may affect Bradley slightly differently as he has already had so much chemo. It was explained to us that the purpose of this chemotherapy is to target any remaining cancer cells, where as the previous chemotherapies were targeting tumors. This combination of drugs has been studied and appears to work very well in DSRCT. In the future the doctors are considering making it part of the treatment protocol right from the start in conjunction with the other chemotherapy agents. The Avastin is a new drug that again shows promise in Bradley’s cancer. It seems to be so new that we are not sure that any other DSRCT patients have used it. After the 6 rounds of chemotherapy Bradley will possibly be having a stem cell transplant. However, they usually harvest stem cells from siblings. Bradley only has “half” siblings and as of now he is not a candidate for this treatment. It is being thought that in the next several months the National Cancer Institute will be expanding the stem cell transplant protocol for DSRCT patients to include non-sibling donors. This is certainly a hope of ours. There is also some discussion about needing radiation. In the past patients received total abdominal radiation which is quite hard on the body and toxic to not only the “bad” cells but also the “good, healthy” cells. Memorial Sloan Kettering Cancer Center is however in the process of getting FDA approval for a new treatment that would take the place of total abdominal radiation. It is our hope that this will be available by the time Bradley finishes these 6 chemo cycles.
Also on Thursday, Bradley was released from the hospital. He walked all six blocks back to the Ronald McDonald House in the freezing cold. We spent Friday, Saturday, and Sunday in our room. Bradley was able to get some much needed rest, and unfortunately was still quite uncomfortable. Bradley was supposed to begin weaning himself from the pain medicine starting Friday, February 20, only a week after his major surgery. As his pain was quite intense over the weekend I continued to give Bradley his pain medicine around the clock. We both felt he was released too soon from the hospital.
Monday, February 23 Bradley met with Dr. Merola another oncologist on the pediatric sarcoma team. She noticed that he was in pain and instructed him to continue to take the pain medicine as often as he needed it. She said he was still on a very low dose of immediate release pain medicine, and she seemed quite surprised that Bradley was not on a long lasting pain medicine as well. Bradley was given the ok to begin his 1st round of the new chemotherapy. It is administered over an hour infusion daily for 10 days. He will go Monday-Friday, have the weekend off as the clinic is closed, and then Monday-Friday again. Bradley will not start the Avastin until the 2nd round of chemo, as it is a wound inhibitor. So, we will finally be able to leave for home on Saturday, March 7, after over a month of being in NY. Bradley will be able to receive the chemotherapy in Atlanta from Dr. D’Amato, and just like with Houston, we will have to return to NY for scans every 8 weeks.
Tuesday, February 24 Bradley met with the surgeon, Dr. LaQuaglia for his follow up visit. He was told everything looked very good, but he needed to start weaning from the pain medicine. Since Bradley was receiving different orders as far as taking the pain medicine, he and I just decided if he needed it he would take it and if not he would begin the weaning process. Dr. LaQuaglia also explained that there are 4 oncologists and 6 nurse practitioners, in addition to him and his staff that will all be in charge of Bradley’s treatment. We were very pleased in hearing that Dr.LaQuaglia will remain active in Bradley’s treatment, as well as to hear that the entire "team" are all aware of Bradley, and his treatment is frequently reviewed. No one person can make a decision in terms of Bradley’s treatment, the entire “team” reviews options and decides together on a treatment plan. Thus, we will not be returning to Houston for further treatment. Memorial Sloan Kettering will become Bradley's main treatment facility.
Today is Wednesday, February 25 and Bradley’s 3rd day of chemotherapy. Thus far he has done very well on it. He has however begun to experience some typical nausea. Bradley continues to walk the six blocks to treatment and the six blocks back to the Ronald McDonald House after treatment. The Ronald McDonald House is very nice. It has 84 patient rooms and is filled with all sorts of amenities. There are free tickets to shows and musicals, all sorts of in-house entertainment and activities, and several times a week a great meal is provided. We are fortunate to be able to stay here for Bradley’s treatment, and we will also be able to stay here in the future for our “scan” visits.
Hopefully the next week and a half will go very quickly, especially for Bradley. Even in the midst of his pain I have yet to hear Bradley complain. He is a true inspiration and example of one who remains ever strong in spiritual, emotional, and physical strength, and I am continually learning from him. As always thank you everyone for all of the prayers, cards, and well wishes.
Thursday, February 19 was a very busy day for Bradley. The rest of his staples were removed. I counted over 70 staples total removed, but lost count after that. We also met with a new oncologist, Dr.Chou. We all discussed what Bradley needed to do next in terms of treatment. It was decided that Bradley will do 6 rounds of a new chemotherapy. This chemo is comprised of 3 drugs, Irinotecan, Temodar, and Avastin. These are not considered “high dose” chemotherapies, and therefore are not supposed to have as many side effects. Though, it may affect Bradley slightly differently as he has already had so much chemo. It was explained to us that the purpose of this chemotherapy is to target any remaining cancer cells, where as the previous chemotherapies were targeting tumors. This combination of drugs has been studied and appears to work very well in DSRCT. In the future the doctors are considering making it part of the treatment protocol right from the start in conjunction with the other chemotherapy agents. The Avastin is a new drug that again shows promise in Bradley’s cancer. It seems to be so new that we are not sure that any other DSRCT patients have used it. After the 6 rounds of chemotherapy Bradley will possibly be having a stem cell transplant. However, they usually harvest stem cells from siblings. Bradley only has “half” siblings and as of now he is not a candidate for this treatment. It is being thought that in the next several months the National Cancer Institute will be expanding the stem cell transplant protocol for DSRCT patients to include non-sibling donors. This is certainly a hope of ours. There is also some discussion about needing radiation. In the past patients received total abdominal radiation which is quite hard on the body and toxic to not only the “bad” cells but also the “good, healthy” cells. Memorial Sloan Kettering Cancer Center is however in the process of getting FDA approval for a new treatment that would take the place of total abdominal radiation. It is our hope that this will be available by the time Bradley finishes these 6 chemo cycles.
Also on Thursday, Bradley was released from the hospital. He walked all six blocks back to the Ronald McDonald House in the freezing cold. We spent Friday, Saturday, and Sunday in our room. Bradley was able to get some much needed rest, and unfortunately was still quite uncomfortable. Bradley was supposed to begin weaning himself from the pain medicine starting Friday, February 20, only a week after his major surgery. As his pain was quite intense over the weekend I continued to give Bradley his pain medicine around the clock. We both felt he was released too soon from the hospital.
Monday, February 23 Bradley met with Dr. Merola another oncologist on the pediatric sarcoma team. She noticed that he was in pain and instructed him to continue to take the pain medicine as often as he needed it. She said he was still on a very low dose of immediate release pain medicine, and she seemed quite surprised that Bradley was not on a long lasting pain medicine as well. Bradley was given the ok to begin his 1st round of the new chemotherapy. It is administered over an hour infusion daily for 10 days. He will go Monday-Friday, have the weekend off as the clinic is closed, and then Monday-Friday again. Bradley will not start the Avastin until the 2nd round of chemo, as it is a wound inhibitor. So, we will finally be able to leave for home on Saturday, March 7, after over a month of being in NY. Bradley will be able to receive the chemotherapy in Atlanta from Dr. D’Amato, and just like with Houston, we will have to return to NY for scans every 8 weeks.
Tuesday, February 24 Bradley met with the surgeon, Dr. LaQuaglia for his follow up visit. He was told everything looked very good, but he needed to start weaning from the pain medicine. Since Bradley was receiving different orders as far as taking the pain medicine, he and I just decided if he needed it he would take it and if not he would begin the weaning process. Dr. LaQuaglia also explained that there are 4 oncologists and 6 nurse practitioners, in addition to him and his staff that will all be in charge of Bradley’s treatment. We were very pleased in hearing that Dr.LaQuaglia will remain active in Bradley’s treatment, as well as to hear that the entire "team" are all aware of Bradley, and his treatment is frequently reviewed. No one person can make a decision in terms of Bradley’s treatment, the entire “team” reviews options and decides together on a treatment plan. Thus, we will not be returning to Houston for further treatment. Memorial Sloan Kettering will become Bradley's main treatment facility.
Today is Wednesday, February 25 and Bradley’s 3rd day of chemotherapy. Thus far he has done very well on it. He has however begun to experience some typical nausea. Bradley continues to walk the six blocks to treatment and the six blocks back to the Ronald McDonald House after treatment. The Ronald McDonald House is very nice. It has 84 patient rooms and is filled with all sorts of amenities. There are free tickets to shows and musicals, all sorts of in-house entertainment and activities, and several times a week a great meal is provided. We are fortunate to be able to stay here for Bradley’s treatment, and we will also be able to stay here in the future for our “scan” visits.
Hopefully the next week and a half will go very quickly, especially for Bradley. Even in the midst of his pain I have yet to hear Bradley complain. He is a true inspiration and example of one who remains ever strong in spiritual, emotional, and physical strength, and I am continually learning from him. As always thank you everyone for all of the prayers, cards, and well wishes.
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