Mood: not sure
Karl and I went down to Dana Farber for a consultation today. While I knew we needed to do this....I needed a little Xanax (anxiety med) help. I was really nervous about what Dr. Diller would say. I came out of the meeting totally relieved, excited about having sketch of plan to follow and with a new perspective on recurrent neuroblastoma. No...as of now...there still is no cure BUT there are ways of handling it like a chronic disease. A chronic disease that could exist for quite a few years.
My objectives in treating Morgan is many fold...I would like the least invasive, most productive treatment that would contribute more to the quality of life versus the quantity of it. What I am learning is that there really is no right or wrong (since there is no solid cure) but we really need to be careful that we don't put the "cart before the horse". We also learned that the protocols that are the most invasive don't necessarily lead to more quantity.
With that said, Dr. Diller believes what we are doing right now seems to be the best approach for our criteria and Morgan's physical state. Morgan is responding to the chemo at DH with few side effects. Yes....her hair is falling out and her belly is more sensitive....but she isn't vomiting, can still go to school and seems to have reduced pain. There will be a point where we are going to have to move onto another treatment. At some point, the neuroblastoma will figure out a way to ignore the effects of the medicinal "cocktail" she is on. It is at this point that we'll have to look at other options. It may happen sooner than later because she has had some substantial back pain the past day or two, but that may be due to weather. We'll see. At least now, I have that "sketch of a plan" so I'll have some sort of direction when that day comes.
I think we are going to try to keep treatments in Dartmouth as long as we can. Of course, from a scientific view, Dana Farber would like to see Morgan on a protocol down there so they can further chart the effectiveness of experimental neuroblastoma treatments. Dr. Diller seems to understand and respect our position and the fact that Dana Farber makes Morgan REALLY nervous and agitated. Given these factors, she is willing to work with Morgan's Dr. at DH to make treatments as traumatic free as possible for Morgan. We also learned that the treatment in PA wasn't as severe as we thought but now is not the time, for Morgan, to participate in it.
Sooooo, all in all, a good day. Who knows what tomorrow will bring - but for now, my heart and head seem to be in agreement. Karl, also, is in agreement. This is an amazing accomplishment in itself!!
The next step?? In talking tonight with Dr. Chaffee at DH, Morgan is scheduled for her next round of chemo next week...Tuesday, Wednesday, and Thursday. Because of the back pain, her Dr. is going to try to schedule a scan or two to see if something is still growing and causing pain despite the chemo. After today, I'll feel much more confident in our current direction. It is such a blessing having some sort of game plan.
Well, good night. We feel (especially today) the power of everyone's prayers and positive energies in carrying us on this journey.
Thank you and God Bless,