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.

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.