This afternoon was our big meeting to discuss the Georgia Cure Plan.. it was a packed house - Four grandparents, one aunt, Brian, me, Georgia's pediatrician, our new resident, our old resident, the oncology "fellow" and the attending oncologist as well as our nurse today, a medical student, a child life specialist, our social worker and of course little miss Georgia.
Questions were asked, answers given, side effects discussed and we were given a treatment road map. Overall the consensus is that Georgia has JMML a type of Leukemia, she also has AML which is a different type of Leukemia.. JMML is something that you "meet the criteria for" and AML (in her case) is one where you take a biopsy of her tumor to determine. They know 100% that she has AML , the JMML she meets the criteria for which includes her skin rash which is called JXG or histiocytosis. The tricky part is that sometimes JMML will have"blasts" where it will go through the bloodstream and cause a blast which would result in her tumor.. the mysterious part of all of this that they can't find any Leukemia in her blood or her bone marrow. They also can't find anyone else, ever who has had a display of symptoms like Georgia.. it's like her body skipped the second step (the blood/bone marrow) but still had a blast.
The Cure Plan:
AML is treated with chemotherapy, JMML is treated with a bone marrow transplant, Georgia will have both. Typically AML is treated with five rounds of intensive chemo, sometimes a transplant is necessary. Georgia will receive one to two rounds of this intensive chemotherapy then go to transplant. The chemo is given for 10 days then you spend the rest of the month in the hospital letting her body recover. If we don't have a bone marrow match by the time the first round is done we'll likely go on to round two.. if we do have a match and the leg tumor has shrunk or is gone we'll go straight from round one to transplant. The oncologist handed out our treatment road map to almost everyone in the room.. Georgia took my copy, crumpled it up looked at it then threw it on the floor - I love this girl!
They need to do another biopsy of her leg tumor on Monday so likely chemo will begin Tuesday.. I am glad to have the weekend to take a breath, love my girl and visit with a few friends. Once all of this starts she will be very susceptible to getting sick because she will essentially have no immune system - that is a scary place to be, finding the balance of staying sane and protecting my daughter.
I still feel like I am in the twilight zone but am feeling very positive about what were doing - all through this treatment we are involving the naturapath on staff here to keep G feeling as good as possible. This is going to be an agonizing road but I know we can do it.. I know she can do it.