I've attempted to post an update several times over the last few weeks to no avail, due to this or that. I'm including my previous drafts, trying to encapsulate the last two weeks since our last post.
Our quiet mornings together I cherish. I used to weep, sometimes exploding into tears, as I held Madeleine close to me in fear ~ that I better remember this feeling, this moment, if this child was to be called to heaven. It's an incredibly lonely and gut-wrenching feeling to fear for your child's life. One morning my weep turned to sobs and I called Nana. She prayed with me, counseled me in my faith, shared with me her faith & belief that Madeleine is healed for good, and to check my despair because it has no place in our home or my heart. I prayed quietly to myself for days after that and the Lord gave me peace as we waited.
Thursday night (6/28) after the MRI is one of the longest, though I was so exhausted from normal life. Daddy had difficulty getting to bed & an even harder time sleeping. I assured him "she's ok; she has to be." I felt as if God had already told me so that I could say those words with such confidence. Since we couldn't sleep we awoke late and rushed out of the house Friday, June 29th to meet with Dr Davidson for the MRI results. She said, "Madeleine's MRI looks absolutely beautiful, and her ventricles look even better than before, she looks perfect."
We couldn't have asked for better news.
The ultrasound was completed last week, and we expect the spinal tap on Tuesday. With the anticipated results of both of these tests to be negative, Madeleine can "officially" be termed IN REMISSION. What a wonderful feeling, a sense of accomplishment I feel for her. This tiny little girl is the bravest, most inspirational person I have ever known. We know our lives are never going to be the same: she'll undergo surveillance every 2-3 months for years; she'll have assessments and therapies of various frequencies; she will also continue to have huge achievements along the way, whether "on average" for her age or otherwise. The point is, she's alive! she's well! she'll get to grow up!!!!!!
I am so thankful that her treatment went as it did; it could have been so much more challenging on so many levels. Sometimes I think she made it look too easy, because some people don't seem to "get it," what Madeleine has really achieved and the odds that she has beat thus far and will continue to overcome. A few years ago, hardly any of these children survived. Madeleine has demonstrated what a warrior she truly is, that with her circumstances, she was able to beat the terrible disease that we can't seem to fathom why...why her? why any child? I'll have to ask God that when I get to heaven.
Our latest challenges have been food and gaining weight. I really want to avoid a feeding tube if we can help it; one less thing to maintain. She hasn't really began eating food yet, though we try every day. She's taking a little longer to grow accustomed to food in her mouth but so far so good, just slow going. It's definitely a test of my patience, since as a result, she's still exclusively nursing and still vehemently refusing a bottle if she can hear, smell or see me. Madeleine has steadfastly remained at 6.8kg (about 14.75lbs) and hasn't budged over that. This was her weight when she was first admitted for the emergency surgery in December at 12 weeks old. At 9 months, an average baby girl of 27 inches should weigh closer to 18 pounds, though we anticipated she wouldn't be anywhere near average in her growth as a result of treatment. Her height hasn't slowed down, so she could be long and lean for quite some time. However, I and the docs will be much more comfortable with me going back to work when she's able to put on a little more weight.
Other challenges have mostly been with big sister. Madeleine is happy as anything to watch her and laugh at her, just to be around her. Sister on the other hand loves Madeleine, but is definitely experiencing some of the normal 3-yr old stuff as well as adjusting to a new sibling, some jealousy, and even some aggression. She's getting better the longer that we are home, nonetheless it's very trying for two sleep-deprived parents. We still haven't quite managed to make up for lost sleep and I know I feel like I've aged about 10 years in 6 months. I guess all we need is time. Time will heal all things. And I plan to hire a high school girl to help me around the house! At least for the summer.
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| Momma & Madeleine after haircut |
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| before the cut 6/20 |
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