Day 18 (cont): Good News

That fateful Monday, when we were told to go the MGH emergency room without any information but that they "wanted to check the blood work because there was something odd about it," we sat in a private room in the children's section of the MGH emergency room for some time before three doctors visited us with the bad news. Mady's oncologist, Dr. Friedmann was one of those people. She has been our point person since, although she shares being on the 18th floor with a few other oncologists, so we saw her the first week, but other doctors are the point people when she is absent from the floor. Last week, when Madeline did not make the less than 5% marker, we were not told by the oncologist on duty and waited until the following day for the information, given to us by Dr. Friedmann. So in my mind, bad news arrives later at MGH.

But that changed Thursday afternoon when we were told that Madeline has less than 1% leukemia cells in her bone marrow sample. We are waiting for the final results, and Dr. Huang assured us that the preliminary results are usually pretty accurate and if not, they wouldn't be off by 4%. It did feel like forever waiting for the news, alternating trying really hard not to think about it with fearing the worst and assured of the best. Apparently, like last week, there are so few cells that they had to investigate further, and this is typical for day 8, and day 15 lab work. As Dr. Huang mentioned in the sentence following the one that gave us relief, the real test will be on the 29th day. Day 29 is the day of the next bone marrow aspiration. At that time, they will look at the sample for minimal residue disease and we will know if she continues on her given protocol, or if added treatment is required. The real test is on the 29th day, until the next test... until the next test... until she has no more cancer. The battle has just begun... and we have some good news.

Joy, thankfulness, short term relief take shape, and I can actually smile. Friends visit, and I was able to walk parts of Boston talking in barely cohesive sentences with two Moms while our children hung out at 1816. Madeline felt crummy from the double dose of chemo she takes on Wednesday afternoons, but her friends regaled her with silliness and made her feel a little better.

I know we have said it before, but thank you for all of the cards, emails, support and care you have given. It is an immeasurable gift!! Love, Chris

For those who read the initial entry, I edited quite a bit of it. First, it seemed rambling when I re-read it days later, and second, it was fairly negative. We have good days and bad days, moments filled with optimism and hope and moments where fear takes hold and for me, it's excruciating. There are moments where I think of bad luck, but often feel that we have very good fortune and that the room is spiritually fortified by the amazing view. And as for strength, one friend commented "And, most importantly, you will learn how to be weak and strong, there for each other and not, in different combinations and rhythms ... to the extent that you have a much deeper appreciation for each other, each of the kids, your extended family, and your friends." Those word make sense to me in the situation we now find ourselves.