I can't decide if what's transpired this morning is a big mistake or a blessing in disguise.
We had a 9:00a appointment this morning to meet with a genetics MD to discuss Madeleine's genetic diagnosis. Lately both of the girls have been having trouble sleeping completely throughout the night. Needless to say, they both awoke individually in tears (in separate bedrooms) around 5am, and we all literally slept right through our appointment.
Jeff & I had been discussing this appointment for the last week; was the timing just really off?
She has completed treatment, and whatever we do know is that the treatment should be sufficient in preventing a relapse. From the medical perspective they can not tell us absolutely for sure 100% that the ATRT won't/can't return. But then they told us in January that there's only a chance she would survive at all, and here she is. Lesson #1 in faith.
The INI1 gene is so complicated and we can only begin to try to understand everything that it means for Madeleine. In some ways- many ways- too much information is a bad thing. At least while we were in treatment and since we've been home, a trip to Children's Hospital of Philadelphia has been out of the question (this is where the leading INI1/ATRT geneticist is located). There isn't much known for sure, is what we've been told. From our Facebook support group of ATRT parents, it seems that many of those kids do not have the mutation or deletion. The only thing we really want to know is, based on the fact she has the genetic mutation, does this increase her chance/ensure she will relapse?
We are extremely thankful to all be under one roof, to make dinner, to just be home; at the same time, the anxiety and stress are still very much the same, if not worse. Welcome to cancer survivor hell, where now that the imminent danger is gone, the very long wait-and-see period settles in. We don't stop living our lives, in fact we're still trying desperately to rebuild our life; rather, we live like we/she were dying, not taking a moment for granted. It's easy to say that, hear that in a song or a cliche, but for us it's REAL. Her tomorrow isn't guaranteed to us. Although none of us really are...but for Madeleine...God, we pray she survives this FOR GOOD, FOREVER! and ever. That's all we really want to know... and they can't tell us that. Her next MRI is scheduled for the end of September. As we watch her fuzzy hair grow in like a buzz cut, it's hard to not be frightened. To see her hair grow in that quickly and be reminded that THAT is how fast the disease grew into a tumor. When that scan comes back clear, and the next one in December, and the next one in March...perhaps then the anxiety will begin to subside. It's like a burning lump in the back of the throat that never really goes away, something like persistent heartburn that there is no tums for. It's aching fear consuming our insides. We still very much need prayer- prayer that some sanity comes soon, decompression soon. I hate that this has or will become detrimental to our future. We've overcome so much, yet it still feels like the longest freaking marathon in history.
We are extremely thankful to all be under one roof, to make dinner, to just be home; at the same time, the anxiety and stress are still very much the same, if not worse. Welcome to cancer survivor hell, where now that the imminent danger is gone, the very long wait-and-see period settles in. We don't stop living our lives, in fact we're still trying desperately to rebuild our life; rather, we live like we/she were dying, not taking a moment for granted. It's easy to say that, hear that in a song or a cliche, but for us it's REAL. Her tomorrow isn't guaranteed to us. Although none of us really are...but for Madeleine...God, we pray she survives this FOR GOOD, FOREVER! and ever. That's all we really want to know... and they can't tell us that. Her next MRI is scheduled for the end of September. As we watch her fuzzy hair grow in like a buzz cut, it's hard to not be frightened. To see her hair grow in that quickly and be reminded that THAT is how fast the disease grew into a tumor. When that scan comes back clear, and the next one in December, and the next one in March...perhaps then the anxiety will begin to subside. It's like a burning lump in the back of the throat that never really goes away, something like persistent heartburn that there is no tums for. It's aching fear consuming our insides. We still very much need prayer- prayer that some sanity comes soon, decompression soon. I hate that this has or will become detrimental to our future. We've overcome so much, yet it still feels like the longest freaking marathon in history.
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