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.

12 comments:

  1. Good morning from Houston. Enjoyed your new blog. You are constantly in my thoughts and prayers. Love, mom

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  2. Thanks for the update on the blog. You both are in our thoughts and prayers! Sounds like you have found a fantastic doctor in NY! Take care!

    Love,
    Jenny and Steve

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  3. David & BeverlyJanuary 28, 2009 at 5:17 PM

    Bradley & Marissa,
    Thank you for sharing the update, and be assured of our continual prayers on your behalf. May you be filled and surrounded by the peace, presence and power of the Holy Spirit. Our thoughts and prayers are with you.

    Love & prayers,
    David & Beverly

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  4. Bradley,

    Never fear, there are some EXCELLENT sarcoma oncologist at MSK! I hate that you have had the problems with coordinating your care, but so thankful for that nurse. It sounds like you and Melissa are on top of things and don't need to worry. Just look at you - you WILL get good care, whether or not this Dr. Trent cooperates. Sending prayers for a totally successful surgery.

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  5. Bradley, we are so encouraged to hear that you will soon be having surgery. Thanks so much to you and Marissa for keeping up the blog. Please know that in Tennessee we think and pray for you often. You may have missed duck season this year, but you'll get 'em next season!

    Mr. Mike and Ms. Alicia Ladd

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  6. Bradley and Marissa,
    Great seeing you both today. Jack loves spending time with you at your home! We know your surgery will be successful and your MD in NY sounds like one of the best. We love you!
    Meaghan and Jack

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  7. Good Morning again from Houston. Hope you have a good weekend. You are constantly in my thoughts and prayers. Love, mom

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  8. I am praying for you and your family.

    Love in CHRIST
    Stephanie Peevyhouse
    Newbern TN

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  9. Thoughts and prayers are with you. Love, mom

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  10. Hi Bradley and Marissa,

    Just wanted to let you know that we wish you both a good trip to NY. We know that your surgery will go well. You have such a great attitude. You are truly an inspiration to us all. We wish you both the very best. You are always in our thoughts and prayers. Love, Uncle Charlie and Aunt Joanie

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  11. Bradley & Marissa,

    Hope you're packed and ready for a safe trip to New York. We're still praying every day for God to finish the miracle He has already begun.

    Do you remember the "Footprints" poem? The last line says "During your times of trial and suffering when you see only one set of footprints it was then that I carried you." Well....He has been carrying you and will continue to do so. We know that both of you believe this, too.

    See you in New York on Tuesday afternoon.

    Love,

    Mom and Dad Dycus

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  12. Here it is. I know it has been a long year for you, but here you are. I am sure you will keep on keepin on like we have all seen you do. We are praying for your speedy recovery. I cant wait to set up the dates for that fishing trip. We love you man and I know you are in the best of hands, God's speed, and we will see you soon.
    love, nathan

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