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!
Monday, April 27, 2009
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.
Tuesday, February 17, 2009
Moved to ICU
We left off on Friday afternoon, February 13. Bradley was doing very well. He was able to get up and walk two laps around the hospital. All of the nurses were shocked and surprised at how well he was doing so quickly. Bradley does like to impress the ladies! His pain was controlled, and he was also diligently using the breathing thing they give you to prevent pneumonia. That night a “candy cart” came around for all of the children and their families. It had full size candy in every assortment you could imagine. Our nurse told us to stock up for the week and we gladly obeyed. Just another perk to being on the pediatric floor.
Saturday, February 14, seemed as though it was going to be another great day for Bradley. The tube in his nose used to suck out his stomach acid was removed. It was done very quickly and was very uncomfortable for Bradley and caused a nosebleed. Later in the day his chest tube was removed. Thankfully the removal of this did not hurt, as it was painful having it in and it was also leaking. Unfortunately after this things started to go downhill fast.
Bradley had not needed blood during his operation or on Friday. However, on Saturday his hemoglobin had dropped to 7.6. At Memorial Sloan Kettering they transfuse at 8 or less. So Bradley was given 2 units of blood. Near the end of the second unit Bradley had a mild fever. I did not think much of this as this has happened in the past. The resident assured us it was normal to run a mild fever for up to 4 days post op. Bradley was also producing an “ok” amount of urine, but the resident wanted to jump start the body’s natural process by giving him more fluid to help push it out. I think this was the start of our troubles. Bradley’s oxygen level fell to around 70. The normal amount is supposed to be 95 or higher. It was just by chance that they did his vitals at that moment as Bradley was not feeling short of breath. This seemed to alarm everyone as suddenly a rush of 3 residents and 2 nurses came in trying to fit him with an oxygen mask. This was one of the downsides to being on a pediatric floor. They had to raise his oxygen level using the highest amount of oxygen they are comfortable giving. Also at this time Bradley began experiencing intense pain in his incision. He felt as if his stomach was swelling with fluid causing his incision to stretch apart. We also learned the blood he had been given did not raise his hemoglobin as it should have.
So within a matter of hours Bradley developed a fever, low oxygen levels, intense pain and still low hemoglobin levels. I was worried of course and the fact that the residents seemed worried made me worry more. They drew blood to culture for infection as well as to send off to see if Bradley experienced a reaction to the blood transfusion. They said it would typically have happened early on, but since he had so much chemo his body may have had a delayed reaction. Another theory was he may have had too much fluid causing there to be fluid in his lungs. The scary part was these were all theories and none of them seemed to really know. He was sent for multiple chest x-rays, no easy task switching beds when you are in an extreme amount of pain. The x-rays came back looking pretty normal. Lasix was ordered (a diuretic) to help flush fluid. Bradley was hoping this would help with his pain and abdominal swelling. We went to bed with Bradley on high oxygen and no real answers or relief to pain.
Sunday, February 15, did not start out any better. Bradley had a long night due to his pain. His oxygen level had not improved, nor his pain, but his fever was gone. More chest x-rays were ordered as well as an abdominal x-ray. According to the resident it showed a small amount of fluid in Bradley’s lungs. She seemed quite concerned and said she would feel more comfortable transferring Bradley to the step down ICU unit. I thought this was one of the better decisions they had made so Bradley would receive more individualized care.
When Bradley entered the step down ICU unit the nurses and a nurse practitioner immediately came in to evaluate him. The nurse practitioner immediately addressed his pain. Bradley and I had asked his nurse in the old room several times to check his epidural. Bradley thought that being transferred from bed to bed for his x-rays knocked the epidural catheter out. I also asked the nurse when he was getting an x-ray about a puddle on the bed. Bradley and I put 2 and 2 together and realized his epidural was out and this was causing his pain. In ICU the nurse practitioner confirmed our suspicions and removed the epidural. It was a great idea to help with pain, too bad it did not serve its purpose. I was however relieved that this was what was causing his extreme pain. I felt horrible that Bradley had been receiving next to nothing in terms of pain medicine. The NP immediately adjusted his pain medicine and also said that his dose was not effective for his weight. Within 20 minutes Bradley was getting relief from his pain. She also reviewed his chest x-ray and said there was definitely fluid on his lungs as well as a partially collapsed lung. Thus, causing Bradley’s decreased oxygen level. They started him on lasix and by the end of the day he had lost 2 liters of fluid. His pain was controlled and the oxygen they were giving him was reduced, and he was doing fine maintaining the normal oxygen level. They also had him up walking, sitting up, and using his breathing thing. They said this would help greatly in getting rid of all the excess fluid. The resident had told him not to sit up or walk because it would further hinder his breathing and oxygen level. Bradley had not walked for a full day and this set him back some.
By the end of yesterday, Sunday, Bradley was walking and on clear fluids and looking overall 100% better. I felt much better about everything since we knew why everything was happening and they were working to correct the problems. I was not very happy that 3 residents each told us different theories, and that they did not bother to up his pain medicine or check his epidural until we went to ICU. I was just thankful though that while in ICU the nurse practitioner addressed all of his problems and corrected them shortly thereafter.
That leads us to today, Monday, February 16. Bradley has been walking, sitting up, and beginning to eat soups and such. His pain has subsided some and he is not using his “pain button” nearly as much. He is maintaining 95 for his oxygen level on his own. He is continuing to receive lasix and that in combination with moving around will help to flush out any remaining fluid in his lungs, etc. He received 2 units of blood taking his hemoglobin from 7.7 to over 10, and he did not experience a fever this time. His other drain was removed as well as the bandages over his incision. He will stay in ICU until his room there is needed. I am glad to have him there as long as possible. His care there is wonderful.
He is getting stronger and getting himself out of bed, each time he says it becomes easier. We are hoping tomorrow is an even better day yet and that there are no more setbacks to Bradley’s recovery.
Saturday, February 14, seemed as though it was going to be another great day for Bradley. The tube in his nose used to suck out his stomach acid was removed. It was done very quickly and was very uncomfortable for Bradley and caused a nosebleed. Later in the day his chest tube was removed. Thankfully the removal of this did not hurt, as it was painful having it in and it was also leaking. Unfortunately after this things started to go downhill fast.
Bradley had not needed blood during his operation or on Friday. However, on Saturday his hemoglobin had dropped to 7.6. At Memorial Sloan Kettering they transfuse at 8 or less. So Bradley was given 2 units of blood. Near the end of the second unit Bradley had a mild fever. I did not think much of this as this has happened in the past. The resident assured us it was normal to run a mild fever for up to 4 days post op. Bradley was also producing an “ok” amount of urine, but the resident wanted to jump start the body’s natural process by giving him more fluid to help push it out. I think this was the start of our troubles. Bradley’s oxygen level fell to around 70. The normal amount is supposed to be 95 or higher. It was just by chance that they did his vitals at that moment as Bradley was not feeling short of breath. This seemed to alarm everyone as suddenly a rush of 3 residents and 2 nurses came in trying to fit him with an oxygen mask. This was one of the downsides to being on a pediatric floor. They had to raise his oxygen level using the highest amount of oxygen they are comfortable giving. Also at this time Bradley began experiencing intense pain in his incision. He felt as if his stomach was swelling with fluid causing his incision to stretch apart. We also learned the blood he had been given did not raise his hemoglobin as it should have.
So within a matter of hours Bradley developed a fever, low oxygen levels, intense pain and still low hemoglobin levels. I was worried of course and the fact that the residents seemed worried made me worry more. They drew blood to culture for infection as well as to send off to see if Bradley experienced a reaction to the blood transfusion. They said it would typically have happened early on, but since he had so much chemo his body may have had a delayed reaction. Another theory was he may have had too much fluid causing there to be fluid in his lungs. The scary part was these were all theories and none of them seemed to really know. He was sent for multiple chest x-rays, no easy task switching beds when you are in an extreme amount of pain. The x-rays came back looking pretty normal. Lasix was ordered (a diuretic) to help flush fluid. Bradley was hoping this would help with his pain and abdominal swelling. We went to bed with Bradley on high oxygen and no real answers or relief to pain.
Sunday, February 15, did not start out any better. Bradley had a long night due to his pain. His oxygen level had not improved, nor his pain, but his fever was gone. More chest x-rays were ordered as well as an abdominal x-ray. According to the resident it showed a small amount of fluid in Bradley’s lungs. She seemed quite concerned and said she would feel more comfortable transferring Bradley to the step down ICU unit. I thought this was one of the better decisions they had made so Bradley would receive more individualized care.
When Bradley entered the step down ICU unit the nurses and a nurse practitioner immediately came in to evaluate him. The nurse practitioner immediately addressed his pain. Bradley and I had asked his nurse in the old room several times to check his epidural. Bradley thought that being transferred from bed to bed for his x-rays knocked the epidural catheter out. I also asked the nurse when he was getting an x-ray about a puddle on the bed. Bradley and I put 2 and 2 together and realized his epidural was out and this was causing his pain. In ICU the nurse practitioner confirmed our suspicions and removed the epidural. It was a great idea to help with pain, too bad it did not serve its purpose. I was however relieved that this was what was causing his extreme pain. I felt horrible that Bradley had been receiving next to nothing in terms of pain medicine. The NP immediately adjusted his pain medicine and also said that his dose was not effective for his weight. Within 20 minutes Bradley was getting relief from his pain. She also reviewed his chest x-ray and said there was definitely fluid on his lungs as well as a partially collapsed lung. Thus, causing Bradley’s decreased oxygen level. They started him on lasix and by the end of the day he had lost 2 liters of fluid. His pain was controlled and the oxygen they were giving him was reduced, and he was doing fine maintaining the normal oxygen level. They also had him up walking, sitting up, and using his breathing thing. They said this would help greatly in getting rid of all the excess fluid. The resident had told him not to sit up or walk because it would further hinder his breathing and oxygen level. Bradley had not walked for a full day and this set him back some.
By the end of yesterday, Sunday, Bradley was walking and on clear fluids and looking overall 100% better. I felt much better about everything since we knew why everything was happening and they were working to correct the problems. I was not very happy that 3 residents each told us different theories, and that they did not bother to up his pain medicine or check his epidural until we went to ICU. I was just thankful though that while in ICU the nurse practitioner addressed all of his problems and corrected them shortly thereafter.
That leads us to today, Monday, February 16. Bradley has been walking, sitting up, and beginning to eat soups and such. His pain has subsided some and he is not using his “pain button” nearly as much. He is maintaining 95 for his oxygen level on his own. He is continuing to receive lasix and that in combination with moving around will help to flush out any remaining fluid in his lungs, etc. He received 2 units of blood taking his hemoglobin from 7.7 to over 10, and he did not experience a fever this time. His other drain was removed as well as the bandages over his incision. He will stay in ICU until his room there is needed. I am glad to have him there as long as possible. His care there is wonderful.
He is getting stronger and getting himself out of bed, each time he says it becomes easier. We are hoping tomorrow is an even better day yet and that there are no more setbacks to Bradley’s recovery.
Friday, February 13, 2009
Surgery Update
Bradley and I arrived at Memorial Sloan Kettering Cancer Center at 6:30 yesterday morning (February 12) in preparation of his surgery. He had lab work done and received fluids until about 10 am. We then went down to the pre-op area where Bradley received an epidural catheter. This was inserted to control Bradley’s abdominal pain better than just IV pain medicines. The epidural catheter will remain in for 3-5 days and will come out when Bradley is able to eat and drink and take oral pain medicine. Bradley’s mom, dad, his sister Lori and her husband Steve, and myself all were allowed to stay with him until he was wheeled back to the operating room. Bradley was not the least bit nervous. He was very talkative and was laughing and joking around with everyone right up until the surgery. The nurses even commented that he was very social with them while being anesthetized. Bradley went to the operating room at about 11:20 am.
The surgery began at 12:30 and lasted until right about 7pm. Bradley’s incision starts at his breast bone and extends to his pelvic bone. He did very well throughout the entire surgery and did not lose a lot of blood. Dr. LaQuaglia met with me after surgery and told me that everything looked good and that he was able to remove all “visible tumors”. I was so excited to hear this news, and I was also very happy to learn that several places we initially thought contained tumors did not. We are definite believers in the power of prayer.
We were able to see Bradley at about 8:30pm in the recovery/ICU unit. He spent the night there because of the late hour and also because he remained intubated. The uncomfortable tube was kept down his throat because of the length of the incision and the duration of the surgery. Prior to surgery Bradley and I had worked out all sorts of hand codes to use to communicate since he would not be able to talk. Much to my surprise Bradley did a better job at remembering them than I did. He wanted to know all about the procedure and outcome. He was quite alert and was able to nod and answer questions. The nurse said the tube would be removed from his throat when he became even more alert.
Bradley’s dad and I spent the night in a hospital waiting room. At midnight I received a call from his nurse and I immediately became concerned. Thankfully, she told me they had removed the tube from Bradley’s throat, that he was talking, and that he wanted to talk to me. Bradley got on the phone and said his nurse would let me go and visit him for ten minutes. I was thrilled that Bradley was doing so well and that I was able to sneak a visit in to see him.
This morning at 10 am Bradley was moved from ICU to his own room. He is on the pediatric floor as everything about his care is pediatric as this is a pediatric cancer. At MD Anderson he was not treated by pediatric specialists. Of the two I much prefer the pediatric side of it. Before Bradley's surgery Bradley's dad told Dr. LaQuaglia to "take good care of his son." To this Dr. LaQuaglia replied, "In the operating room he is my son." I was extremely impressed by Dr. LaQuaglia. He could not be any nicer. All of the staff here are very kind and caring. They have all sorts of juices, snacks, and extra little perks that also help.
We have been told Bradley is doing great. The nurse practitioner asked him if he had a high pain tolerance and he said, "No, I just don't complain." Boy is that the truth. He is already using his breathing machine and in an hour it is time for him to get up and walk. I dread this so much for him, but he is strong in many ways. He is a real trooper.
Bradley is well on the road to recovery. He is doing great, the surgery was a huge success, what more could we ask for? We certainly give thanks to the Lord for hearing and answering our prayers and for His guidance every step of the way on the journey to recovery. We so appreciate everyone’s prayers and support, and we thank you all. I am sure Bradley will come back later and post various specifics about our New York adventure and his recovery, as for now I hope my post gets Bradley’s approval.
The surgery began at 12:30 and lasted until right about 7pm. Bradley’s incision starts at his breast bone and extends to his pelvic bone. He did very well throughout the entire surgery and did not lose a lot of blood. Dr. LaQuaglia met with me after surgery and told me that everything looked good and that he was able to remove all “visible tumors”. I was so excited to hear this news, and I was also very happy to learn that several places we initially thought contained tumors did not. We are definite believers in the power of prayer.
We were able to see Bradley at about 8:30pm in the recovery/ICU unit. He spent the night there because of the late hour and also because he remained intubated. The uncomfortable tube was kept down his throat because of the length of the incision and the duration of the surgery. Prior to surgery Bradley and I had worked out all sorts of hand codes to use to communicate since he would not be able to talk. Much to my surprise Bradley did a better job at remembering them than I did. He wanted to know all about the procedure and outcome. He was quite alert and was able to nod and answer questions. The nurse said the tube would be removed from his throat when he became even more alert.
Bradley’s dad and I spent the night in a hospital waiting room. At midnight I received a call from his nurse and I immediately became concerned. Thankfully, she told me they had removed the tube from Bradley’s throat, that he was talking, and that he wanted to talk to me. Bradley got on the phone and said his nurse would let me go and visit him for ten minutes. I was thrilled that Bradley was doing so well and that I was able to sneak a visit in to see him.
This morning at 10 am Bradley was moved from ICU to his own room. He is on the pediatric floor as everything about his care is pediatric as this is a pediatric cancer. At MD Anderson he was not treated by pediatric specialists. Of the two I much prefer the pediatric side of it. Before Bradley's surgery Bradley's dad told Dr. LaQuaglia to "take good care of his son." To this Dr. LaQuaglia replied, "In the operating room he is my son." I was extremely impressed by Dr. LaQuaglia. He could not be any nicer. All of the staff here are very kind and caring. They have all sorts of juices, snacks, and extra little perks that also help.
We have been told Bradley is doing great. The nurse practitioner asked him if he had a high pain tolerance and he said, "No, I just don't complain." Boy is that the truth. He is already using his breathing machine and in an hour it is time for him to get up and walk. I dread this so much for him, but he is strong in many ways. He is a real trooper.
Bradley is well on the road to recovery. He is doing great, the surgery was a huge success, what more could we ask for? We certainly give thanks to the Lord for hearing and answering our prayers and for His guidance every step of the way on the journey to recovery. We so appreciate everyone’s prayers and support, and we thank you all. I am sure Bradley will come back later and post various specifics about our New York adventure and his recovery, as for now I hope my post gets Bradley’s approval.
Tuesday, January 27, 2009
Surgery - February 12, 2009
This round of chemo wasn’t quite as smooth as the last. Because the ifosfamide is so hard on my kidneys and bladder, the main blood count that is monitored while I am inpatient is my creatnine (which is a kidney function indicator). My normal creatnine level is 0.7, so any reading above that is cause for concern. While I am inpatient, I receive 6 liters of IV fluids per day to keep this level at 0.7. The day that my chemo finished my creatnine level had elevated to 0.9. After an additional two days in the hospital, the level had come down to 0.8. They agreed to discharge me but I had to wear a backpack with additional IV fluids for four days. My creatnine level was back to 0.7 by the second day.
Because of the concern that I had over my neutropenic fever from Round 9, I had decided to stay in Houston until my blood counts returned to normal, even after I was discharged from the hospital. This usually takes about another week. Fortunately, Gary allowed us to stay in his hotel room again this trip. Thanks again Gary. I take several antibiotics every round to prevent infection, but also if the antibiotic cocktail is just right, they can prevent the fever I have when my counts are low. My fever was so out of control last round that they decided that they would change my antibiotics. They almost succeeded this time. My fever only lasted two days and only got up to 101. As soon as my fever broke, my counts began to rise, and we headed for home.
After ten rounds and eight months of chemotherapy, I have decided to forego the next round in favor of surgery. The surgery is scheduled for February 12, 2009 at Memorial Sloan-Kettering Cancer Center in New York. As you know, we have been discussing surgery options for a while now. Marissa has been very proactive in researching my options regarding surgery.
Marissa and I follow an online forum with other DSRCT patients and family members. This forum provides a wealth of knowledge to us that we would otherwise not have access to. Through this forum, others share their experiences, good and bad, so that people like me may either help them with their needs, or just have the knowledge from their experience for the future. The most helpful part of the forum for me is hearing the others tell the medical advice that they have been given. For me, it is like getting the advice of many doctors for the price of one. As you can imagine, with such a rare disease, there are many opinions on how to treat the disease, and rarely do any two people agree on what would be the best treatment option for a patient. With that said, most everyone on the forum seems to agree that there is one surgeon that stands above the rest. Dr. Laquaglia at MSKCC has performed more surgeries on DSRCT patients than any other surgeon in the world. He is the chief of pediatric surgery with 29 years of experience. While we were in Houston, we met with the surgeon at MD Anderson, Dr. Hayes-Jordan. She, of course, explained the procedure and her experience with DSRCT. When we asked her opinion of Dr. Laquaglia, she had nothing but good things to say. While she would never some out and say this, she seemed to imply that she knew that Dr. Laquaglia was the best and that if he was willing to perform my surgery then I should accept.
With all of the information that I have, I couldn’t think of going with any other option than surgery in New York. The one problem that we have is getting the cooperation of my oncologist, Dr. Trent. I did not finalize my decision until I was out of the hospital. I didn’t want to leave Houston without discussing my decision with him, but he is only in the office to see patients on Thursdays. We spoke to his nurse before we left on Wednesday, January 14, and she assured us that he would call us on our way home and that if he didn’t call, we could page him. Well, today is January 27, and after many messages we are still waiting on that call. He is clearly not on board with my decision to go to New York, and I feel like that may jeopardize my care in the future. Fortunately, his nurse has been helpful in getting Dr. Laquaglia the information that he needs, e.g. clinical dictations, CT scans, blood test, etc. The main reason that I needed to speak to Dr. Trent was to determine whether I should continue with my next scheduled round of chemo before my surgery. Dr. Laquaglia said that he could not advise me because he was not my oncologist but hinted that he would rather I skip it to let my blood counts recover. With no advice from Dr. Trent, I was forced to decide on my own to skip the chemo. At this point, I am really hoping that Dr. Laquaglia can recommend an oncologist at MSKCC so that I never have to go back to Dr. Trent.
Since we returned from Houston on the 14th, things have been rather quiet. On Saturday, the 17th my mom, dad and grandmother were finally able to make their Christmas visit. My grandmother’s visit was a complete and pleasant surprise. They didn’t tell us that she was coming until she got out of the truck. Marissa was babysitting our nephew, Owen, so the rest of us went to eat barbecue and ribs at “Swallow at the Hollow” in Roswell. Sunday morning, we went to our church and a quick lunch afterward. Sunday evening, we were able to meet my cousin Gavin, his wife Amanda, and their two kids, Jackson and Morgan at Fellini’s for pizza. Amanda has since given birth to their third child, McKenzie Marie, on January 24. Congratulations, Gavin and Amanda. My parents and grandmother returned home on Monday, the 19th. As always, the visit was too short, but we hope they enjoyed being here as much as we enjoyed having them.
Fortunately, I am feeling just as well after the 10th round of chemo as I was after the 9th. Also, because I have some extra time to recover before surgery, I have been able to enjoy some normal activities. I have made a few visits to work, worked on some small projects around the house, and had some quality time to spend with Marissa. I just feel very blessed to have taken this second chemo regimen so well.
We will be leaving for New York on Saturday, February 7th. I have a consult with Dr. Laquaglia on Monday, February 9th. February 10th and 11th will be full of CT scans and blood tests. Surgery is scheduled for February 12th. I was told to expect two days in the ICU and then an additional ten days in the hospital after that. I will have Marissa make a post following surgery to give an update. Thanks again for all of your support and prayers.
Because of the concern that I had over my neutropenic fever from Round 9, I had decided to stay in Houston until my blood counts returned to normal, even after I was discharged from the hospital. This usually takes about another week. Fortunately, Gary allowed us to stay in his hotel room again this trip. Thanks again Gary. I take several antibiotics every round to prevent infection, but also if the antibiotic cocktail is just right, they can prevent the fever I have when my counts are low. My fever was so out of control last round that they decided that they would change my antibiotics. They almost succeeded this time. My fever only lasted two days and only got up to 101. As soon as my fever broke, my counts began to rise, and we headed for home.
After ten rounds and eight months of chemotherapy, I have decided to forego the next round in favor of surgery. The surgery is scheduled for February 12, 2009 at Memorial Sloan-Kettering Cancer Center in New York. As you know, we have been discussing surgery options for a while now. Marissa has been very proactive in researching my options regarding surgery.
Marissa and I follow an online forum with other DSRCT patients and family members. This forum provides a wealth of knowledge to us that we would otherwise not have access to. Through this forum, others share their experiences, good and bad, so that people like me may either help them with their needs, or just have the knowledge from their experience for the future. The most helpful part of the forum for me is hearing the others tell the medical advice that they have been given. For me, it is like getting the advice of many doctors for the price of one. As you can imagine, with such a rare disease, there are many opinions on how to treat the disease, and rarely do any two people agree on what would be the best treatment option for a patient. With that said, most everyone on the forum seems to agree that there is one surgeon that stands above the rest. Dr. Laquaglia at MSKCC has performed more surgeries on DSRCT patients than any other surgeon in the world. He is the chief of pediatric surgery with 29 years of experience. While we were in Houston, we met with the surgeon at MD Anderson, Dr. Hayes-Jordan. She, of course, explained the procedure and her experience with DSRCT. When we asked her opinion of Dr. Laquaglia, she had nothing but good things to say. While she would never some out and say this, she seemed to imply that she knew that Dr. Laquaglia was the best and that if he was willing to perform my surgery then I should accept.
With all of the information that I have, I couldn’t think of going with any other option than surgery in New York. The one problem that we have is getting the cooperation of my oncologist, Dr. Trent. I did not finalize my decision until I was out of the hospital. I didn’t want to leave Houston without discussing my decision with him, but he is only in the office to see patients on Thursdays. We spoke to his nurse before we left on Wednesday, January 14, and she assured us that he would call us on our way home and that if he didn’t call, we could page him. Well, today is January 27, and after many messages we are still waiting on that call. He is clearly not on board with my decision to go to New York, and I feel like that may jeopardize my care in the future. Fortunately, his nurse has been helpful in getting Dr. Laquaglia the information that he needs, e.g. clinical dictations, CT scans, blood test, etc. The main reason that I needed to speak to Dr. Trent was to determine whether I should continue with my next scheduled round of chemo before my surgery. Dr. Laquaglia said that he could not advise me because he was not my oncologist but hinted that he would rather I skip it to let my blood counts recover. With no advice from Dr. Trent, I was forced to decide on my own to skip the chemo. At this point, I am really hoping that Dr. Laquaglia can recommend an oncologist at MSKCC so that I never have to go back to Dr. Trent.
Since we returned from Houston on the 14th, things have been rather quiet. On Saturday, the 17th my mom, dad and grandmother were finally able to make their Christmas visit. My grandmother’s visit was a complete and pleasant surprise. They didn’t tell us that she was coming until she got out of the truck. Marissa was babysitting our nephew, Owen, so the rest of us went to eat barbecue and ribs at “Swallow at the Hollow” in Roswell. Sunday morning, we went to our church and a quick lunch afterward. Sunday evening, we were able to meet my cousin Gavin, his wife Amanda, and their two kids, Jackson and Morgan at Fellini’s for pizza. Amanda has since given birth to their third child, McKenzie Marie, on January 24. Congratulations, Gavin and Amanda. My parents and grandmother returned home on Monday, the 19th. As always, the visit was too short, but we hope they enjoyed being here as much as we enjoyed having them.
Fortunately, I am feeling just as well after the 10th round of chemo as I was after the 9th. Also, because I have some extra time to recover before surgery, I have been able to enjoy some normal activities. I have made a few visits to work, worked on some small projects around the house, and had some quality time to spend with Marissa. I just feel very blessed to have taken this second chemo regimen so well.
We will be leaving for New York on Saturday, February 7th. I have a consult with Dr. Laquaglia on Monday, February 9th. February 10th and 11th will be full of CT scans and blood tests. Surgery is scheduled for February 12th. I was told to expect two days in the ICU and then an additional ten days in the hospital after that. I will have Marissa make a post following surgery to give an update. Thanks again for all of your support and prayers.
Sunday, January 4, 2009
Round 10 Of Chemotherapy To Start The New Year
Let me start by wishing everyone a Happy New Year. The holidays went by so quickly this year and thankfully I was feeling good enough to enjoy them. After my last round of chemotherapy, the ER visit for my fever, and the blood transfusion I felt better than I have felt in a long time. We spent Christmas Day at Marissa’s sister’s house with her family. Friday, December 26 Marissa and I spent preparing for the arrival of my family. I felt so well that I cleaned out our garage, the inside and outside of our car, and helped with the housework, and believe it or not I actually enjoyed being able to clean.
My sister Lori, her husband Steve, and my other sister’s son, Hunter, arrived on Saturday, December 27. This was the first time they had ever been to our house and for a visit to Atlanta. That evening I took Hunter to the Ferrari dealership so he could see them up close and in person. Then we all went downtown to Centennial Olympic Park which was still lit up for Christmas with outdoor ice skating. We showed them a little bit more of downtown Atlanta, and ate at Felini’s Pizza, one of Marissa and my favorites.
Sunday, December 28 my brother Frankie, his wife Doris, and Hunter’s brother Dawson arrived. Marissa and Lori spent most of the day cooking for our big meal that night which we all enjoyed upon Frankie’s arrival. We spent the rest of the night digesting our food and relaxing at our house.
Monday, December 29 we all went to the aquarium downtown. We spent most of the day there as it was so crowded. We had a great time at the aquarium and viewing the Titanic exhibit they had there. Lori and Steve left after the aquarium to head back home, they both had to work on Tuesday. We all ate at Chili’s for lunch at 5:30 pm (which was more like dinner) because traffic was so bad that this was the first opportunity we had to eat. After that we all went back to our house and hung out. We were all pretty warn out from our long day.
Frankie, Doris, Dawson, and Hunter all left the next afternoon, Tuesday, December 30. The rest of the day Marissa and I spent taking down Christmas decorations and packing for our trip to Houston.
Wednesday, December 31 we rang in the New Year while driving to Houston. We arrived in Houston Thursday, January 1. We went out to dinner with Gary that night, and he allowed us to stay with him again at his hotel.
Friday, January 2 I had lab work and a chest xray and then met with Dr. Trent. We discussed my fever from the last round and were told that it could have potentially been a life threatening situation. That being said we have decided to stay in Houston until my blood counts return to normal after this round of chemotherapy. We are also going to be meeting with a surgeon while we are here to discuss surgical options. Back in November Marissa and I sent my medical records and scans to a pediatric surgeon in New York at Memorial Sloan Kettering Cancer Center. Dr. LaQuaglia is a highly renowned surgeon who specializes in Desmoplastic Small Round Cell Tumor resections. Dr. LaQuaglia reviewed my records and scans and feels that I am a good candidate for surgery. We are very pleased that surgery seems to be a fast approaching option. That being said, it also brings about new concerns, frustrations, and worries. After discussing this with Dr. Trent he recommended a pediatric surgeon at MD Anderson named Dr. Hayes-Jordan. Marissa and I will meet with her during this visit to compare surgeons and all of our options.
I began my 10th round of chemotherapy Friday night at about 4 am. I will be on my 5th dose tonight(Sunday, January 4) with 2 more to go for a total of 7 doses. I will finish Tuesday morning, and will probably be released on Wednesday the 7th or Thursday the 8th of January. Then it is just a matter of my counts returning to normal. Hopefully I will not experience another fever, but if I do at least I am in Houston under Dr.Trent’s care.
We go home only briefly before having to return to Houston for scans January 22. These scans are very important as they will tell exactly how the new chemo is working, as well as depict how soon my surgery will be. We thank everyone for their support and continue to ask for prayers for healing as well as for guidance on all of our upcoming decisions.
My sister Lori, her husband Steve, and my other sister’s son, Hunter, arrived on Saturday, December 27. This was the first time they had ever been to our house and for a visit to Atlanta. That evening I took Hunter to the Ferrari dealership so he could see them up close and in person. Then we all went downtown to Centennial Olympic Park which was still lit up for Christmas with outdoor ice skating. We showed them a little bit more of downtown Atlanta, and ate at Felini’s Pizza, one of Marissa and my favorites.
Sunday, December 28 my brother Frankie, his wife Doris, and Hunter’s brother Dawson arrived. Marissa and Lori spent most of the day cooking for our big meal that night which we all enjoyed upon Frankie’s arrival. We spent the rest of the night digesting our food and relaxing at our house.
Monday, December 29 we all went to the aquarium downtown. We spent most of the day there as it was so crowded. We had a great time at the aquarium and viewing the Titanic exhibit they had there. Lori and Steve left after the aquarium to head back home, they both had to work on Tuesday. We all ate at Chili’s for lunch at 5:30 pm (which was more like dinner) because traffic was so bad that this was the first opportunity we had to eat. After that we all went back to our house and hung out. We were all pretty warn out from our long day.
Frankie, Doris, Dawson, and Hunter all left the next afternoon, Tuesday, December 30. The rest of the day Marissa and I spent taking down Christmas decorations and packing for our trip to Houston.
Wednesday, December 31 we rang in the New Year while driving to Houston. We arrived in Houston Thursday, January 1. We went out to dinner with Gary that night, and he allowed us to stay with him again at his hotel.
Friday, January 2 I had lab work and a chest xray and then met with Dr. Trent. We discussed my fever from the last round and were told that it could have potentially been a life threatening situation. That being said we have decided to stay in Houston until my blood counts return to normal after this round of chemotherapy. We are also going to be meeting with a surgeon while we are here to discuss surgical options. Back in November Marissa and I sent my medical records and scans to a pediatric surgeon in New York at Memorial Sloan Kettering Cancer Center. Dr. LaQuaglia is a highly renowned surgeon who specializes in Desmoplastic Small Round Cell Tumor resections. Dr. LaQuaglia reviewed my records and scans and feels that I am a good candidate for surgery. We are very pleased that surgery seems to be a fast approaching option. That being said, it also brings about new concerns, frustrations, and worries. After discussing this with Dr. Trent he recommended a pediatric surgeon at MD Anderson named Dr. Hayes-Jordan. Marissa and I will meet with her during this visit to compare surgeons and all of our options.
I began my 10th round of chemotherapy Friday night at about 4 am. I will be on my 5th dose tonight(Sunday, January 4) with 2 more to go for a total of 7 doses. I will finish Tuesday morning, and will probably be released on Wednesday the 7th or Thursday the 8th of January. Then it is just a matter of my counts returning to normal. Hopefully I will not experience another fever, but if I do at least I am in Houston under Dr.Trent’s care.
We go home only briefly before having to return to Houston for scans January 22. These scans are very important as they will tell exactly how the new chemo is working, as well as depict how soon my surgery will be. We thank everyone for their support and continue to ask for prayers for healing as well as for guidance on all of our upcoming decisions.
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