I wanted to thank everyone for the sweet and supportive personal messages, posts and even phone calls.
As a result from all the testing, we now know it's neuroblastoma for sure. Now we are waiting for two things to come back: 1) the histology of the tumor from the Shimada test (the pathologist that looks at all the child cancer cases in the COG network, which is the Children's Oncology Group) and Dr. Shimada will tell us if the biology of the tumor looks "mean" and 2) getting the N-MYC gene test back, which is a test that looks for amplification of the cells in the tumor. The amplification is basically if the cells are making copies of themselves, and if they are that means they are aggressive and will need chemo therapy as opposed to simple surgical intervention. So once we know those two items, we will be able to know what classification the NB is (4S that we want or straight 4 High Risk). At this point here are the results we have back:
NB for sure based on the reports the pathologist at Primary Children's Hospital got from the biopsy
Bone scan came back negative
Bone marrow biopsy aspirates came back negative
Bone core came back with a small cluster, but they are not worried about it because there can be 10% presence of NB in the marrow and have it be okay
They are still hoping that it's Stage 4S (without risk factor) and if it is they will surgically remove the adrenal gland and follow up with monthly tests that will include the following: urine samples, imaging tests (MRI's), and at first more bone marrow biopsies.
This is all very good news and even though we are still extremely concerned, we are buoyed by the results thus far and are grateful for the prayers and well wishes from our friends and family... including those of you here that have been so supportive during this hard time. It's interesting... I am watching both my child and my grandbaby in pain... it is quite possibly the hardest thing I've ever endured... including my OWN cancer.
I guess the upshot of this is that while we are feeling ecstactic about the recent piece of good news... we still are asking for prayers and positive thoughts... not only for Ari but for all other families going through this kind of difficulty. A child should never have to endure what these children go through... I've walked past far too many hospital rooms in the past month, containing children in pain, children alone, families who can't understand what the physician is telling them... and that is to say nothing about the children in countries without the health care that exists in the industrialized world.
Sorry to get so deep here... I just wanted to say thanks and to give those of you who have asked for an update, just that.
xoxo Rhonny and Candice and Clay and most importantly Ariyana
P.S. Here's a photo taken today... even fighting cancer... her smile can't be dimmed!
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