Next, we should mention that we have been humbled of late in a number of ways. Most prominently, we are following a fellow infant Leukemia family that is being treated in Dayton and they are reporting some troubling news on their website. It sounds like they are going to have a long night tonight anticipating some test results with their doctor tomorrow. Say a prayer for Alivia. Also, Lincoln is another infant being treated at Dayton for ALL--he is close to moving to Cincinnati Children's for a bone marrow transplant following an apparent relapse. Nan is one of Maggie's friends who is recovering and bouncing back from a bone marrow transplant in Cincinnati. Ashley is another friend of Maggie's who is fighting following a relapse. Ally is in and out of Dayton Children's going through a challenging stage of her treatment. The families of Lydia as well as Liam are trying to live without their little ones. We have mentioned before that families that we've met who are fighting the same battle are especially important to us. I would like to think that we help and support each other (if only in spirit and via the internet) , and it is just so valuable to know that we're not alone. Of course we wish that none of us had to worry such adult-like worries about our children. Since so many of you are enthusiastic in your support of Maggie, please share your thoughts and concern with a few others. Please say a prayer for these children and families as well as the families in hospitals near you.
That being said, Maggie is pretty stable right now. Her diarrhea is significant, but her hydration is fairly good. She is sleeping a little bit better and--most significantly--she's a happier toddler on TPN. It's amazing to see what a basic level of nourishment will do. We did find out today that her urine cultures revealed traces of her UTI from last week. So, they started another round of antibiotics, this time a planned 7 days.
Maggie's diarrhea has been severe enough for so long that we sometimes get distracted from the worries of cancer. That's probably a good thing. We are trusting that for right now, we can handle diarrhea and will try to be more appreciative of what we have. For our sake, give your child or loved-one a hug and don't take good health for granted.
5 comments:
You probably don't know me, but my husband and I went to Bluffton (and I went to Central), and I remember you both. My Mom is friends with Whitney's Mom on Facebook, and she told me about your website. I've been thinking about you and praying for you and Maggie. It isn't fair that any children have to be sick. Blessings to you all.
Thanks for this post, Andy. Along with Whitney's earlier sharing of your trials, this is an excellent reminder to all of us as we enter Thanksgiving Weekend.
A reminder of how much we do have to be thankful for, despite whatever trials we may have.
And a reminder to hold in God's light all those who suffer, whether we know them or not.
Love and prayers always.
Great Aunt Phyllis
Whitney,
Each night when I put my kids to bed, we say prayers. They used to include prayers for family and other things. They've now switched to prayers for the kids in the Hemoc unit. Maggie makes the list nightly as do several of the other kids you mentioned (Ally being closest to our hearts) I wanted to email you last week after your post because I could sense the deep frustration you were feeling. On those days, if nothing more, remember that you are being surrounded in prayer. God hasn't left you. You are doing an amazing job.
Suzanne (Janel/Nicki's friend)
I'm sorry to hear that Maggie's diarrhea situation has not gotten any better and seems even worse. I am also sorry that I have been extremely busy lately and haven't checked in until now. I have read your posts from the last few weeks and I can understand your exhaustion, frustration, and confusion. I know how tired I get from not sleeping during 1-2 weeks at a time with steroids from Katie-Belle wanting and not wanting something to eat or drink and wetting the bed and a few blow-out diapers following steroids. I can't imagine dealing with it day and night for as long as you guys have. It seems that something should be able to help. I can't imgine how Maggie must feel as well. I know that you are grateful to still have Maggie and have her in remission, but I hope that the TPN or something will improve her diarrhea and her nutritional status. I wish I understood why God allows all of this suffering, and I completely don't. I know it's even harder to understand when it is you and your child doing the suffering. I wish I could be more like the apostle Paul and to be able to look beyond this world and count it all as loss as I focus on the goal of heaven, but I too am more like Job wondering why and how to get through most of the time. Even now, when I think back to some of the things that Katie-Belle went through, I don't know how we made it through, and I can't even let my mind go back there. I realize compared to so many others of you, we had it easy, so I understand, I sympathize, and I will pray when you are too weary.
Karen Cooley
Never hesitate to share your true thoughts and feelings. Doing so is the only way that you can heal, and also the only way that all of us out here will know how best we can at least try and help you. This journey is so desperately hard. It is an INTERNAL as well as a physical battle....it is a test of will. Hang in there, and know that all of us out here are pulling for not just Maggie's physical healing, but for all of you to come through this to the other side. Take care of each other. Have a wonderful and blessed Thanksgiving. As my daughter used to say, you are all in my heart, every day.
Love and Blessings,
Monica Miyashita, Lydia's Mama
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