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.
Wednesday, February 25, 2009
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.
Wednesday, December 17, 2008
Traveling To Houston, New Chemo And The Holidays
Marissa and I have been very busy since our last post. I finished my 8th and final round of Ifosfamide and Adriamycin, and I was not sad to see that regimen over with. After my usual “bad” week after chemo, I was feeling well enough to travel. Marissa and I left to go to Knoxville, TN to spend Thanksgiving with Marissa’s mom and grandmother the Monday before Thanksgiving. We were able to spend a week there before having to leave again for Houston. We had a great time and really enjoyed getting away. It had been almost a year since our last visit to Knoxville, and we had a lot of fun doing some of the things we always enjoyed when we lived there. It also gave us a chance to visit with some friends we hadn’t seen in awhile. Our dogs went with us, and they stayed in Knoxville while we went on to Houston the following Monday.
We arrived in Houston on Tuesday, December 2. This visit we actually had someone to greet us when we arrived. Marissa’s mom’s husband, Gary, is in Houston working for FEMA. He gave us his hotel room for several nights, it was only about a block away from MD Anderson, and we all went out to dinner a couple of times during our stay. This made our stay in Houston go by much quicker, and we enjoyed being able to visit with Gary.
Wednesday, December 3 my lab work and scans were performed. Thursday, December 4 we met with Dr. Trent. Dr. Trent told us that the chemotherapy was still working well and shrinking my masses. Of course Marissa and I were happy and very grateful for this news. We then decided to stay in Houston for my 9th round of chemo, as it was a new regimen and required me to be inpatient for 5 days. We decided we were more comfortable receiving this treatment at MD Anderson. I was scheduled to be admitted right after my appointment with Dr. Trent. However, we were sent back to the hotel as no rooms were available. So, Gary gave up his hotel room for another night, and Friday, December 5 I would be admitted.
Friday, December 5 I finally received a phone call from MD Anderson at 5 p.m. telling me my room would be ready around 6:30 p.m. So Friday evening Marissa and I settled in, and I prepared to start my 9th round of chemotherapy. This regimen consists of high dose Ifosfamide only. It is given inpatient because of all of the fluids that must accompany it, as well as monitoring my kidneys daily. There are many pre-medications to receive before the Ifosfamide. The Ifosfamide runs every 12 hours for 2 hours for a total of 7 courses. My first course of Ifosfamide began at 2 a.m. Over the next couple of days I experienced some nausea, but discovered I preferred to be inpatient. Before with my outpatient chemotherapy I had to bring home back packs with infusion pumps that gave me continuous chemo and fluids, and I did not enjoy lugging those heavy packs around. Tuesday, December 9 I received my last dose of Ifosfamide at 2 a.m. All of my lab work was coming back great so I was on track to be released Wednesday, December 10.
Wednesday, December 10 I was told I could be discharged, but there was a catch. I had been receiving over 6 liters of fluids a day and to be released I would have to be able to drink over 2 liters on my own. I was having a hard time drinking as I was feeling nauseous, so Marissa and I discussed it and we decided the best thing to do was to stay in the hospital 1 more day. We were concerned about such a long trip home and we wanted to play it safe. The rest of Wednesday I received fluids, and the next day I would be released. All in all my inpatient experience was very pleasant, and the nurses were really great.
Thursday, December 11 I was released as promised at about noon. Marissa had the car all packed, and we left for home straight from the hospital. We decided to make the drive all in one day so I would be back at home in case I needed fluids. We arrived at home in GA at about 4 a.m. Friday morning. Driving straight through made one really long ride for me and one really long drive for Marissa. Needless to say, we were very glad to be home. Friday, December 12 we were relaxing at home with our dogs, who were delivered that afternoon.
Saturday, December 12 I had a sudden fever. Later that evening it was only getting higher so Marissa and I headed for the ER at Emory Crawford Long. They took several blood cultures to send off, took some lab work, a chest x-ray and gave me fluids. When my lab results came back we learned that my white blood cells were only at 0.2. On Thursday before we left Houston they were at 16. We did not anticipate them falling so quickly, but then again with this new chemo we did not really know what to expect. My fever was due to my low white blood cell count (neutropenic fever), just as I had experienced my first round of chemo. The doctor on call wanted to admit me and give me IV antibiotics until my blood cultures came back. This would take between 24-72 hours. As I am already on preventative antibiotics I decided with my low white blood cell count I would probably be better off at home. From Saturday until Tuesday, December 16 I had a high fever and had to take Tylenol almost around the clock. My blood cultures did come back during this time and were negative for infection.
That brings us up to today, Wednesday, December 17. My fever is gone, but my lab work today showed that my hemoglobin is low (7.5). While all of my other counts (white blood cells, platelets) have started to come back up my hemoglobin is falling. Tomorrow, Thursday, December 18 I will go in for an outpatient blood transfusion. This will be my second transfusion. The first time they did not catch my low hemoglobin until it was 6.6, this made me have to receive the transfusion inpatient as it was necessary to get it that same day. That time I received 3 units of packed red blood cells, tomorrow I will receive 2. This should be enough to boost my hemoglobin to above 9 and prevent me from needing blood over the holidays (hopefully). Despite the fever and blood transfusion I have not felt as bad after the chemo with this new regimen. Hopefully this continues to be the case, and that the next round I will not have the fever and low hemoglobin to deal with.
As far as Christmas celebrations go, Marissa’s family got together this past Sunday while her mom and grandmother were in town. With my fever I was not able to go, but Marissa did bring me home a plate of dinner which I did get to enjoy. My family is planning on coming to Georgia to visit and celebrate Christmas the Saturday after Christmas. I am very excited about this as my siblings have not ever even seen our home in Georgia. We have decided again to travel to Houston for my next round of chemo, we are more comfortable with my care and treatment there. We will be leaving on December 31 with my chemo being scheduled inpatient to begin on Friday, January 2.
Marissa and I wish you all a very Merry Christmas filled with family and loved ones and a safe, happy, healthy New Year.
We arrived in Houston on Tuesday, December 2. This visit we actually had someone to greet us when we arrived. Marissa’s mom’s husband, Gary, is in Houston working for FEMA. He gave us his hotel room for several nights, it was only about a block away from MD Anderson, and we all went out to dinner a couple of times during our stay. This made our stay in Houston go by much quicker, and we enjoyed being able to visit with Gary.
Wednesday, December 3 my lab work and scans were performed. Thursday, December 4 we met with Dr. Trent. Dr. Trent told us that the chemotherapy was still working well and shrinking my masses. Of course Marissa and I were happy and very grateful for this news. We then decided to stay in Houston for my 9th round of chemo, as it was a new regimen and required me to be inpatient for 5 days. We decided we were more comfortable receiving this treatment at MD Anderson. I was scheduled to be admitted right after my appointment with Dr. Trent. However, we were sent back to the hotel as no rooms were available. So, Gary gave up his hotel room for another night, and Friday, December 5 I would be admitted.
Friday, December 5 I finally received a phone call from MD Anderson at 5 p.m. telling me my room would be ready around 6:30 p.m. So Friday evening Marissa and I settled in, and I prepared to start my 9th round of chemotherapy. This regimen consists of high dose Ifosfamide only. It is given inpatient because of all of the fluids that must accompany it, as well as monitoring my kidneys daily. There are many pre-medications to receive before the Ifosfamide. The Ifosfamide runs every 12 hours for 2 hours for a total of 7 courses. My first course of Ifosfamide began at 2 a.m. Over the next couple of days I experienced some nausea, but discovered I preferred to be inpatient. Before with my outpatient chemotherapy I had to bring home back packs with infusion pumps that gave me continuous chemo and fluids, and I did not enjoy lugging those heavy packs around. Tuesday, December 9 I received my last dose of Ifosfamide at 2 a.m. All of my lab work was coming back great so I was on track to be released Wednesday, December 10.
Wednesday, December 10 I was told I could be discharged, but there was a catch. I had been receiving over 6 liters of fluids a day and to be released I would have to be able to drink over 2 liters on my own. I was having a hard time drinking as I was feeling nauseous, so Marissa and I discussed it and we decided the best thing to do was to stay in the hospital 1 more day. We were concerned about such a long trip home and we wanted to play it safe. The rest of Wednesday I received fluids, and the next day I would be released. All in all my inpatient experience was very pleasant, and the nurses were really great.
Thursday, December 11 I was released as promised at about noon. Marissa had the car all packed, and we left for home straight from the hospital. We decided to make the drive all in one day so I would be back at home in case I needed fluids. We arrived at home in GA at about 4 a.m. Friday morning. Driving straight through made one really long ride for me and one really long drive for Marissa. Needless to say, we were very glad to be home. Friday, December 12 we were relaxing at home with our dogs, who were delivered that afternoon.
Saturday, December 12 I had a sudden fever. Later that evening it was only getting higher so Marissa and I headed for the ER at Emory Crawford Long. They took several blood cultures to send off, took some lab work, a chest x-ray and gave me fluids. When my lab results came back we learned that my white blood cells were only at 0.2. On Thursday before we left Houston they were at 16. We did not anticipate them falling so quickly, but then again with this new chemo we did not really know what to expect. My fever was due to my low white blood cell count (neutropenic fever), just as I had experienced my first round of chemo. The doctor on call wanted to admit me and give me IV antibiotics until my blood cultures came back. This would take between 24-72 hours. As I am already on preventative antibiotics I decided with my low white blood cell count I would probably be better off at home. From Saturday until Tuesday, December 16 I had a high fever and had to take Tylenol almost around the clock. My blood cultures did come back during this time and were negative for infection.
That brings us up to today, Wednesday, December 17. My fever is gone, but my lab work today showed that my hemoglobin is low (7.5). While all of my other counts (white blood cells, platelets) have started to come back up my hemoglobin is falling. Tomorrow, Thursday, December 18 I will go in for an outpatient blood transfusion. This will be my second transfusion. The first time they did not catch my low hemoglobin until it was 6.6, this made me have to receive the transfusion inpatient as it was necessary to get it that same day. That time I received 3 units of packed red blood cells, tomorrow I will receive 2. This should be enough to boost my hemoglobin to above 9 and prevent me from needing blood over the holidays (hopefully). Despite the fever and blood transfusion I have not felt as bad after the chemo with this new regimen. Hopefully this continues to be the case, and that the next round I will not have the fever and low hemoglobin to deal with.
As far as Christmas celebrations go, Marissa’s family got together this past Sunday while her mom and grandmother were in town. With my fever I was not able to go, but Marissa did bring me home a plate of dinner which I did get to enjoy. My family is planning on coming to Georgia to visit and celebrate Christmas the Saturday after Christmas. I am very excited about this as my siblings have not ever even seen our home in Georgia. We have decided again to travel to Houston for my next round of chemo, we are more comfortable with my care and treatment there. We will be leaving on December 31 with my chemo being scheduled inpatient to begin on Friday, January 2.
Marissa and I wish you all a very Merry Christmas filled with family and loved ones and a safe, happy, healthy New Year.
Saturday, November 8, 2008
A Night In The Hospital
I finished my 7th round of chemotherapy on 10/24/08, and it was another very tough round for me. The week after chemo is usually my “bad” week, and the following week is usually my “good” week. Well, not this round. Saturday, 11/1/08 ordinarily would have begun my week of feeling much better, where I can actually get out and enjoy doing things before chemo starts again. This time however, I was just not feeling better. We have been told that each round can affect me differently, so we just thought I would perk up a day or so later. By Monday 11/3/08 I was still not feeling better. My home health care nurse came and drew my blood as she normally does on Mondays, but Marissa and I were surprised by the results we received on Tuesday.
When Sharon, our nurse, called us with my lab report she told me that my hemoglobin was only 6.6 which was very low. She said she was calling Dr. D’Amato because she felt I needed a blood transfusion. Sure enough, about an hour later Marissa and I got the phone call to go to Emory Crawford Long for a 23 hour admission and blood transfusion. Upon arrival the doctor told us that they normally administer transfusions at 7.0, and that if I had been older and my hemoglobin was that low I would not have even been able to walk. We felt this explained why I was still feeling so weak and so tired. The doctor was also very impressed that I had not ever had a blood transfusion prior to this, and she told us this would make me feel better within hours. I was definitely looking forward to that.
We checked into the hospital at around 2:30 pm on Tuesday 11/4/08. I was typed and cross matched and it was confirmed that my blood type is A+. At around 9 pm I was given my first of three units that each take 3-4 hours to run. I was given each unit back to back throughout the night. It was a long night as the nurses were in taking my vitals and changing out my IV often. This was also election night and as soon as Obama was elected President people came out of the woodwork to celebrate, scream, and honk their horns in downtown Atlanta. This began at 11 pm and lasted until 3 am when police finally arrived and soon after the streets were quiet. The next morning my labs were drawn again, and I would be discharged based upon the results. At 11 am my results came back. My hemoglobin increased to 9.5, but unfortunately I wasn’t feeling much better as promised. My lab work revealed that my potassium was only 2.7. The low end of normal for potassium is 3.5 so 2.7 is low, and it had dropped from the day before. This most likely explained why I still was not feeling very well, as well as my poor night’s sleep. I was going to have to stay in the hospital for another 4 hours to receive potassium through IV fluids. I told the doctor that my home health nurse could come and administer the potassium, so the orders were faxed, and I escaped staying prisoner in the hospital. I was discharged around noon on 11/5/08.
Thursday, 11/6 I felt some better but not much. I received potassium at home and my blood work showed my potassium was up to 3.1. Friday, 11/7 I was given more potassium at home which should have been enough to bring my levels up to 3.5. I finally began feeling significantly better on Friday and was able to get out, for more or less the first time in 2 ½ weeks, with exception of my hospital adventure.
This was the hardest round I have had, and I hope it is better this coming round. I had a fever higher than normal, my white blood cells did not return to normal as quickly as usual, of course my low hemoglobin, and my low potassium all added to my “routine” symptoms. As a side note I received my results from the MUGA scan (the heart test I had 3 weeks ago), and my heart is functioning just fine. We are definitely thankful for this news. I begin my 8th round of chemotherapy on Monday, November 10. I had very few “good” days this time and chemo time has come all too soon. This round I will speak to the doctor about altering some of my precautionary antibiotics as with our research we have found I should not be taking Levoquin with low potassium, as it may contribute to that, as well as having a low white blood cell count. Too bad we are just now figuring this out. We will see if a new antibiotic alleviates any of my post chemo symptoms. It is hard to predict as my chemo and my antibiotics, as well as several other factors, all result in the same symptoms. This is my last round of this chemo regimen, next round I begin one that is not supposed to be so hard on me. I really hope this is the case, and as far as round 8 goes we are praying it is not nearly as hard as the last.
When Sharon, our nurse, called us with my lab report she told me that my hemoglobin was only 6.6 which was very low. She said she was calling Dr. D’Amato because she felt I needed a blood transfusion. Sure enough, about an hour later Marissa and I got the phone call to go to Emory Crawford Long for a 23 hour admission and blood transfusion. Upon arrival the doctor told us that they normally administer transfusions at 7.0, and that if I had been older and my hemoglobin was that low I would not have even been able to walk. We felt this explained why I was still feeling so weak and so tired. The doctor was also very impressed that I had not ever had a blood transfusion prior to this, and she told us this would make me feel better within hours. I was definitely looking forward to that.
We checked into the hospital at around 2:30 pm on Tuesday 11/4/08. I was typed and cross matched and it was confirmed that my blood type is A+. At around 9 pm I was given my first of three units that each take 3-4 hours to run. I was given each unit back to back throughout the night. It was a long night as the nurses were in taking my vitals and changing out my IV often. This was also election night and as soon as Obama was elected President people came out of the woodwork to celebrate, scream, and honk their horns in downtown Atlanta. This began at 11 pm and lasted until 3 am when police finally arrived and soon after the streets were quiet. The next morning my labs were drawn again, and I would be discharged based upon the results. At 11 am my results came back. My hemoglobin increased to 9.5, but unfortunately I wasn’t feeling much better as promised. My lab work revealed that my potassium was only 2.7. The low end of normal for potassium is 3.5 so 2.7 is low, and it had dropped from the day before. This most likely explained why I still was not feeling very well, as well as my poor night’s sleep. I was going to have to stay in the hospital for another 4 hours to receive potassium through IV fluids. I told the doctor that my home health nurse could come and administer the potassium, so the orders were faxed, and I escaped staying prisoner in the hospital. I was discharged around noon on 11/5/08.
Thursday, 11/6 I felt some better but not much. I received potassium at home and my blood work showed my potassium was up to 3.1. Friday, 11/7 I was given more potassium at home which should have been enough to bring my levels up to 3.5. I finally began feeling significantly better on Friday and was able to get out, for more or less the first time in 2 ½ weeks, with exception of my hospital adventure.
This was the hardest round I have had, and I hope it is better this coming round. I had a fever higher than normal, my white blood cells did not return to normal as quickly as usual, of course my low hemoglobin, and my low potassium all added to my “routine” symptoms. As a side note I received my results from the MUGA scan (the heart test I had 3 weeks ago), and my heart is functioning just fine. We are definitely thankful for this news. I begin my 8th round of chemotherapy on Monday, November 10. I had very few “good” days this time and chemo time has come all too soon. This round I will speak to the doctor about altering some of my precautionary antibiotics as with our research we have found I should not be taking Levoquin with low potassium, as it may contribute to that, as well as having a low white blood cell count. Too bad we are just now figuring this out. We will see if a new antibiotic alleviates any of my post chemo symptoms. It is hard to predict as my chemo and my antibiotics, as well as several other factors, all result in the same symptoms. This is my last round of this chemo regimen, next round I begin one that is not supposed to be so hard on me. I really hope this is the case, and as far as round 8 goes we are praying it is not nearly as hard as the last.
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