Wednesday, May 15, 2013

MRI results (Week #9)

Yesterday we went to the oncology clinic for our MRI results and his chemo (carboplatin and vincristine). When we arrived we met a friend of a friend who is also going through a very difficult journey right now. Prayers for that baby girl and her family.
After getting accessed and sending labs we saw our nurse practitioner. She seemed pleased with how Brayden is doing, and we discussed wanting to take a trip. She said that was fine, and that after we picked our dates she would help us get organized. At this point we are unsure if Brayden will even need labs during the trip, but we would need to know where to take him should we run into trouble. Our tentative plan is to drive to Pensacola Florida sometime in early July, rent a condo, and stay on the beach for a week. It would be a low key but exciting adventure for Brayden where everything can take place on his schedule. Every kid should get the opportunity to play on the beach and dip their toes in the ocean right? We are waiting on the date for his next MRI before picking any firm dates, and we will hopefully get that today.
Brayden's labs came back quickly. His hemoglobin is hanging out in the 9's which is acceptable, his platelets are good, and his white count is in the 4's. Unfortunately, his ANC was only 690 which means that we didn't "make counts". To receive carboplatin his ANC must be >750. The oncology team thinks his ANC will be high enough to receive chemo next week and that this is just a little bump in the road. I desperately hope they are right because I feel like every time we miss a treatment we are giving the tumor an advantage :( If this is a problem for the next cycle then they will reduce the dose to avoid skipping weeks in the future.
We then headed to the conference room to view the MRI. On Braydens MRI in January there was a small area with increased brightness (within the existing tumor) with the contrasted images. On this MRI that brighter area is larger. At this point, it is unknown whether this means that the tumor will progress or not. Our oncologist said that if there is significantly more enhancement on the next MRI then it will probably be time to change to a different chemotherapy regimen. However, there are very few options for treating these types of tumors and we do not want to say that this one didn't work unless we are sure. (After you determine a protocol didn't work you can't come back to it later.) Our oncologist also thinks Brayden looks great clinically, and I think that helps calm me some.  
Ultimately, it is unknown what this tumor did before we began treatment. Maybe the enhancement would have been present on an MRI prior to his first chemo dose, or maybe not. That being said, I have talked to some other brain tumor moms, and they all say that enhancement doesn't always lead to growth. In MOST of their experiences it sounds as if enhancement comes and goes in pediatrics, and can vary with each MRI. I guess what I am saying is that until we see true tumor growth, I am not going to freak out. The plan is to get chemo next week, take three weeks off and repeat one time.  Then we will get another MRI and go from there. He will still have to get accessed for labs every week, but thats okay. I think we should be in and out for labs within an hour. The next eight weeks should be relatively easy since he will only be getting chemo monthly. He should feel pretty well I think, so we are going to take the next eight weeks to enjoy Brayden, do lots of fun stuff, and document it very well. If they come back in eight weeks and tell us the tumor has grown and it is time to start a more aggressive treatment I do not want to have any regrets about how we spent this time.  
That being said, we will be headed to Omaha on Sunday morning and we will come back Monday. We are going to take Brayden to the zoo and do some other fun stuff while we are there. The KC zoo was so busy, and Brayden could hardly see some of the exhibits because of the crowds (and because they aren't that great). Hopefully the zoo in Omaha will be less busy since it will be during the week and Brayden can see some more animals......

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