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.


  1. Hey Bradley and Marissa!

    So glad things are going well! You are both in our thoughts and prayers constantly. We have been checking the blog often! Thank you for all the updates. Take care!

    Jenny and Steve

  2. Thanks for the update. We so happy that surgery is over and treatment seems to be going well. Can't believe you're walking to treatment every day. That's amazing! But then the Lord has given you amazing strength. Your last paragraph says it all: "He is a true inspiration and example of one who remains ever strong in spiritual, emotional, and physical strength..." I told our SS class last Sunday that you are my hero! And we're all continuing to pray for you both.

    Aunt Grace & Uncle Bob

  3. Hey Bradley and Marissa! It looks like we are supposed to get some snow here so I'm sure you will be seeing white in NY! I hear you are going to see Lion King tonight. Mom and I saw that when we visited NY and loved it! That should be something fun to do after being cooped up for so long! Sounds like Sloan Kettering is the place to be for treatment and I'm glad you are continuing treatment there. Thats all the news here-maybe Jack will see snow for the first time this week!
    Meaghan and Jack

  4. Marissa said it best in describing you as an inspiration. Keep up the good fight! The Lord is clearly with you and guiding your steps. As always, you and the family are in my prayers.

    Jill Powers and Family

  5. Hey yall, I finally got to read the new post. I hate that the pain has been so bad, and we all hope that it gets better. I cant believe you are walking around with that zipper! Keep doing what they tell you to do. The dogs are fine, everybody has just been napping 'cause the weather has been so crummy, but that is shaping up and getting warmer. We cant wait to see you guys, and have a safe trip home!
    love, positive vibes, and prayers-nate

  6. So thankful that everything is going well. Can't wait for you both to come home! Love, mom

  7. Hi Bradley and Marissa,

    I am so glad to hear things are going well at Sloan. I thought we may run into you guys this past week in the clinic. Jason had a very rough time with the Ifosmide (lots of confusion). Have a safe trip home. Maybe when you come back for scans Jason and Bradley will be feeling well and we could get dinner or something....Take care and we are thinking of you guys...

    Alissa and Jason Napier
    (Roomate from Indiana)

  8. Bradley,
    You don't know me but I grew up with your sister-in-law Ashleigh and one day a few months ago she had a message on Facebook about your blog. I started reading it and was captivated by your incredible story and your admirable will to live and fight to find the right doctors to help you. My mother was diagnosed with cancer almost 2 years ago and we are still working and fighting to get her in remission. I so commend your ability to share your experiences on your blog and feel blessed to be able to follow your story and pray for you and your family. I hope you are doing well, I check your blog often for updates and pray for you as well! God Bless!
    Lauren Reese