Change of Plans

Brody had an MRI today of his head.  It came back all clear.  YAY!  We were expecting to start Brody on chemo on Monday but looks like we are likely going to have to wait a little longer.   This wait is killing me.  Brody's doctor here in Toledo said that he spoke with Dr. Wexler on Thursday evening and that they plan to get us scheduled to meet with Dr. Wexler and Dr. LaQuaglia (great surgeon for pediatric abdominal surgeries) at Sloan-Kettering in New York City next Thursday.   The rest of the medical records they need at Sloan-Kettering are due to arrive there on Monday.  Then the team there will need to review everything and contact us to schedule an appointment.  They told our doctor they will likely see us on Thursday and they are looking at the possibility of doing surgery to remove Brody's tumor sooner rather than later.  This part is wonderful news.  I truely hope there is a way that Dr. LaQuaglia sees to schedule the surgery much sooner than would be done by surgeons here in Toledo.   Right now it appears that Brody's recurrence is a localized tumor in the same location as his original tumor.  Obviously, I want the surgery to happen before the cancer is spreading elsewhere (and I am also worried that maybe the tumor won't be very responsive to chemo and it grows larger and the surgery could become impossible).  I very strongly feel that Brody's best chance of survival depends on surgery occuring as soon as it can happen even if it is a more "aggressive" surgery than waiting until the tumor can be shrunk with chemo.  Also, today we were told that a trial that Dr. Wexler has several patients in with embryonal rhabdomyosarcoma is achieving very similar results to some of the standard chemo therapy options we were considering starting on Monday.  I would love to be able to go ahead and just start Brody in this trial so we can start treating him and hopefully begin shrinking the size of the tumor while we are waiting to see Dr. LaQuaglia.  Unfortunately, one of the medications in the regimen would require that Brody be off of it for at least 4 weeks before he could have his surgery and then he would have to wait another 4 weeks before he could go back on the medication.  Considering that it only took his tumor about 8 weeks to get to the size that it is now, that seems too long of a break in chemo to me.  If our doctor were to start chemo with Brody this is the regimen he would want to start because it is receiving similar response rates as standard therapy but with a lot less toxicity and greater tolerability for the patient.  Obviously, I do want Brody to have a regimen that would be more tolerable and less toxic if expecting similar response.  But other regimens we could start would not require such a large break in chemo to accomodate being able to have his very much needed surgery as soon as possible.  I understand our doctor's rationale and I think it's certainly reasonable.  But I have to trust my Mom instincts that Brody needs surgery as soon as it can happen and that I don't think he can afford to be off chemo for 8 weeks.  Unfortunately, our oncologist is not in agreement with me at this point and since we do not agree, now Brody can't start chemo on Monday and we have to wait until we see Dr. Wexler and Dr. LaQuaglia before any actual treament can begin.  We are scheduled to see Brody's oncologist again on Monday for a follow-up and surgery will happen early next week to place his port, collect a biopsy ,  and bone marrow aspiration.  His doctor here as been checking and feeling the tumor each time he has seen Brody this week to assess if tumor is staying about the same size.  He tells us that the size seems to be about the same since Monday (although I am worried that this is not true since Brody is having pain now in his left leg and he was not earlier in the week).  His doctor will feel the tumor again on Monday and will see if Brody is having any further worsening of his leg pain or not.  If not, the plan is to wait to start treatment for Brody until after we travel to New York City for consult.  But if Brody starts to worsen then we will start chemo (but not sure what) within 24 hours.  Again the wait to just get started is agonizing.  Everyday counts.  The tumor is not getting any smaller while we are waiting and waiting.  I will of course be contacting Sloan-Kettering on Monday morning and pleading with them to please do whatever they can to get us in there as soon as possible and hopefully earlier than Thursday.  Wish me luck with that one. 

Today we had planned to head out to the African Wildlife Safari when Brody was done at the hospital.  Unfortunately, the weather did not alow that to happen today.  Torrential rains during the time we had to go.  We did go see Avengers this evening in the theater.   We all really enjoyed it.  Brody has now become an even bigger Hulk fan.  Geordi and Jaden like Captain America the best of all the Avengers.  We are all looking forward to a trip to Great Wolf Lodge tomorrow.