A million comes to mind a lot these days - like the million dollars the insurance company will pay before this is all over. Well, hopefully not but we'll see.
Being a scientist by training, I tend to like numbers, charts, graphs, statistics. With Caleb, I charted his growth at home and made detailed Excel graphs, always being bothered by the fact that he never even got on a "normal" growth chart for the typical baby. So, like the true scientist I am, I have searched the literature and read just about every article out there on mesoblastic nephroma.
So just to give you an idea of what we are dealing with, apparently, 8 in a MILLION children are born with congenital mesoblastic nephroma. There's nothing inherently genetic about it. It just happens - a random mutation. The majority of those 8 are the "classic" type. A much, much smaller percentage of the 8 will have the "atypical" or cellular variety of mesoblastic nephroma which is considered a more aggressive tumor, often recurs, and carries a poorer prognosis. So as you may have guessed, my little Gracie is quite the high achiever already - being quite possibly that ONE in a million being born with the cellular type of tumor. This explains why when I went online to find a support group for those with mesoblastic nephroma, there were no members in the group.
The chance of getting struck by lightning is also ~ ONE in a million or something like that. So I find it quite interesting that both my sister and I have had these one-in-a-million experiences - her losing a child to lightning.
Well, anyways, the results are in from today's MRI. The tumor is pretty much the same. It has shrunk just slightly but not enough to make it amenable to surgery. So tomorrow will be another chemo day for Grace. So, we have to look on the bright side of things. The bright side of things is that the tumor is not spreading. It looks to be fairly benign and slow growing and that is most likely the reason why it is not responding dramatically to the drugs. It has shrunk just a bit and to the oncologists, they say that it looks more organized, less "crazy" if you will, to use a very nonscientific term. So I think this is a good sign. They say these tumors often die from the center first and then react on the outside later and when they reorganize themselves, or become more compact so to say, they can often be pulled away more easily.
So the plan, I like to call it the "hit me with your best shot" plan - is that Grace will get the same drugs - vincristine and Actinomycin (in slightly higher doses) along with a new drug, cyclophosphamide. I like to call that one the "hit me with your best shot" drug. It will probably make her a little sicker, but only for a day or two.
Other good news - Grace is looking well. Her blood pressures seem to be under control, I think. She is stable, feeding well.
Patience, it's a virtue right? I guess they did say it might take 6-8 weeks. Let's hope it's 6. Let's hope dramatic changes are soon to come.
Tuesday, November 4, 2008
One in a Million
Subscribe to:
Post Comments (Atom)
5 comments:
We'll just pray that she gets a one in a million miracle to cure her one in a million tumor! Hang in there and give Grace our love!
Patience is a virtue but one usually long in coming! I am glad to hear she is stable though and the prognosis is positive. We are all still praying for a miracle on her behalf. A.
Jodie, I hold my breath every time I click on your blog, hoping that your family will have good news on your precious baby. I know I haven't commented much, but I've been here, reading along and praying for you guys. I hope you can take that sweet little girl home soon.
Oh Hon. I am so sorry you didn't get what you were hoping for. But you are right to look on the bright side. It is great that it doesn't seem to be getting worse. Eventually as she grows hopefully they will be able to remove it. It might just take more time. We are here for you for whatever you guys need. Just let us know.
You are such an upbeat person. I don't know if I could even blog during all this, but we are sure glad you do. We check often to see how you and the kids are doing. We put Gracie's name on the prayer roll every time we are there. We add our prayers daily. We love you!!
Post a Comment