A Mary Christmas Update

I had wanted to post an update after Mary's last appointment (Monday) but with the hustle and bustle of Christmas it just didn't happen. Because it's been a couple of weeks since I've updated this will be a bit of a jumbled mess, so bear with me.
Over the past two weeks Mary has been struggle with two things. Sleep and tummy troubles. Both of which result in a grumpy girl. She is also very picky and can't be reasoned with much when it comes to food. Right now it's chicken, rolls or hot dogs. And the only thing I can really get her to drink is milk. I know the milk isn't helping her tummy troubles but it is the only thing she'll drink so I have just gone with it.
Despite all of this I had hopes that she would enjoy Christmas. I busied myself so much with the treat making, present wrapping and general getting ready that when Christmas morning came, after a few presents she was done with it all, it was just too much for her. Which was overwhelming for me. The reality of her, and our, situation hit me like a wave. We continued to try to get her to be interested in opening presents but she just traded laps between David and I begging for the iPad. Then she finally fell asleep on Granny's lap. And then David opened a gift from my parents which were sketches of each of the children. I started crying as soon as I saw a happy Mary with her pigtails. Again more of the wave hit. The fact that we were celebrating the very One who can take away Mary's pain was not lost on me. As I have walked by the stack of unopened presents (still haven't been able to convince her to open them) each day since Christmas I'm reminded of that One who takes away this heartache. And while it's emotional for me it's through Him I know that this will not last forever. There will come a day when the pigtails come back and that she will excitedly rip open her presents again.
I feel like both the lack of sleep and the tummy issues are a result of the steroid that she has been on and off this month. Fortunately she has one more dose (tonight) and then we get a break from it for a while. And even with the grumpiness she isn't without a smile now and then, and she still says, "ok!" and "sure!" when I ask questions. So it's definitely not as bad as that first month.
I had another realization hit me the other day as well as she's been spending so much time with the iPad, despite our efforts to give her some time off of it. I feel like she asks for it more and more during those times she just doesn't feel well. When she has felt better I can distract her with other things and she is much easier to reason with. Her not being able to tell me exactly what she is feeling has it's challenges. I try to be attentive to her behaviors at different time as it's often those are my clues.
At her appointment this past Monday I talked with the doctor a lot about what's coming in the next few weeks and months. Eventually they will give the go ahead to go back to school and I had some questions about that. We've been wondering if she would have another bone marrow biopsy. Dr. T. has been so pleased with her progress that she doesn't necessarily think she needs one but would do one if we asked her to, for our peace of mind. I also talked to her about side affects. There are many that Mary hasn't had to deal with and while I've been grateful I've also had this little thought in the back of my mind that wonders if that means all of this isn't working. Dr T. put me at ease and told me that kids usually don't get as sick, also kids with Down syndrome are also more resilient to the medication and then she said, "and also it's because she's Mary."
 This next week she doesn't have a chemotherapy appointment, just a blood draw at the end of the week. And then the following week starts two weeks of crazy.
In the meantime we hope that you've enjoyed this wonderful season and wish you a happy New Year!

Experience

Experience helps so much when it comes to chemo medications. 

Last week I was so anxious about the new medication plus the re-start of the steroid.

First, the new chemo med. It's red. Which gives her urine a pinkish hue. The most common side affect, though, is nausea. I will be honest I followed her around for about two days with a bucket and a towel. Before they even started the chemo they gave her some anti-nausea medicine. I also have it at home, and from the encouragement of the doctor, kept her on it pretty regularly for those first few days. Due to her stinky burps/breath I know she was nauseous. Fortunately it was never enough that she threw up, or that it even bothered her too much. The downside (one of them?) was that the anti-nausea medicine caused her to be a bit plugged up and that caused her a lot of discomfort. Once she was able to get things moving it was like a dam broke. I won't go into too much detail but I will say that for most one morning she kept going and going. 

As the week went on she became increasingly more grouchy. Or I could say she had more and more bouts of grouchiness. Fortunately I could still reason with her, for the most part. Also our sleep became worse and worse as the week went on (this one continues as we've both been up since 3:30 this morning). I know both of these things are due to the steroid. Which is where the experience of her having been on it before helped tremendously. A few other things helped too. First we were able to find a pharmacy that made it in liquid form in a very small amount. That made giving it to her twice a day far, far far, less of a battle. Also knowing that she would only be on it a week and then we would have a break did wonders for my mental state. 

And finally having two appointments in one week did make for a long week. Which was a warm up really to what January will be like. She has two weeks in there that she will have an infusion almost daily. After next Monday's visit we will have a two week break before those long weeks start.

And that is us in a nutshell.

Happy Tuesday!

Popcorn. The flavor of the week.

Advantage But Not For Granted

Little Miss Mary has been having a lot of pretty good days lately.
She wakes up relatively happy and says, "I sleep." Then we go about our morning.
She doesn't like to be told no, but she never really has.
If someone sneezes, or coughs, she calls out, "You alright?" Even if it's from the other room. Such concern for others.
And she's eating a lot better but it's not without battles sometimes. But she is feeding herself, so I say it's a win. Even if she asks for popcorn morning noon and night.
Yesterday she had a blood test to check somethings out for her appointment coming up on Monday. Everything looked good so we're in the clear. She will have a lumbar puncture, plus chemo infusion. She will be given drug we haven't seen before, so I really have no idea how her body will react to it. And she will start back on the steroid she was on the first month. I'm all kinds of anxious for these changes. Maybe it will be nothing and she will be fine but I'm not holding my breath. The good news is she will only be on the steroid for a week (it will be a week on, week off, week on).
With all her good days she's been having lately my heart has been pretty full. I find myself being ever so careful to take advantage of her smiles and laughter but not, even for a moment, take it for granted. We know a couple other families going through similar, but different, things than us. And for right now their "good days" are fewer and farther in between. My heart aches for them. It's confusing to feel gratitude for your own circumstances, even when they feel heavy, and yet have so much concern and heartache for others. I think it's called empathy. I've been overwhelmed, really, how much this experience has changed my views and abilities to empathize. We all have struggles. That's just part of life. They might be similar but none are exactly the same, since no two people are exactly the same.
I've been thinking a lot about comparison. All too often we hear how important it is to not compare our best with other's. Or our worst with their best. I find the same is true for our struggles. We just can't. I find it hard to say, "Well at least I don't have this problem." Because that, in and of itself, is a comparison. For me I'm finding being able to look beyond the problems I do and don't have and truly learn to empathize. Reaching for that is what is stretching me.
This scripture comes to mind.

And now, as ye are desirous to come into the fold of God, and to be called his people, and are willing to bear one another’s burdens, that they may be light; Yea, and are willing to mourn with those that mourn; yea, and comfort those that stand in need of comfort, and to stand as witnesses of God at all times and in all things, and in all places that ye may be in, even until death, that ye may be redeemed of God, and be numbered with those of the first resurrection, that ye may have eternal life—  Mosiah 18:8-9

 I think I might be learning a little bit more about what this means and how we can apply it to our own lives.
More and more it is  my hope that Mary will touch hearts. As much as I want to keep her all to myself I want others to find hope in her as well. I want others to feel the joy that comes from one of her smiles.
The other day I was in the store and an acquaintance stopped us. I know who she is, and have talked with her before, but don't really know her that well. She had learned of Mary's situation and wanted to know how she was doing. I gave her the simple answer about her continuing to get chemo and next week starts some heavier stuff. Then she asked, "Do then know if it's working?" When I said, "Yes, it is." Relief flooded her face and she wrapped me up in a huge hug. Then, after the hugging, she proceeded to tell me all about the prayer lists she has put Mary's name on. She even sent the link to Mary's blog to her mom and asked her to add her name to all of her Mom's prayer lists, in three different states. Then she called her uncle in Illinois, who is a member of the LDS church as we are, and asked him to add her. Then he told her, "she's already on the list." When she said those words I had chills run through my body. I believe in prayer. I believe it is a real thing. And when I came away from this little encounter I realized that I, we, always need that reminder. Just how real it is.