Talking Food

Let's talk about Mary's diet.
When we were in the hospital the first time we met frequently with the dietitian. She gave me a number of things to read on diet and specifically on what Mary would need to maintain weight as well as eat healthy. The steroid she was on at the time, in addition to everything else, also could cause high blood sugar so she gave us more things to read about that. I was all ready to do this about face on how we all were eating. Not that we ate really bad but there were some things that could definitely change.
And then we came home.
And here is what I could get her to eat:
Sandwiches (meat only, peanut butter would not due. For days she would have a pork sandwich for just about every meal)
Poached eggs (gave myself lots of high fives for this one, although it only lasted a few days)
French Fries and chicken nuggets

And when I say that's all she would eat, I mean that was all she would eat. We would get to the cancer center and she would start asking for french fries. The nurses came to expect it, which was becoming comical in and of itself.

From there she started to expand. She went through a pizza phase. A corn dog phase, then back to sandwiches and now she's holding steady with chips. Just chips. Morning noon and night she asks for chips. Just about any kind will do but she, like her mother, seems to favor the salt and vinegar variety the best. I will say it is easier to pull a bag of chips out of my purse than a corn dog. That much I've learned.

Fortunately as time has gone one we have been able to expand her diet a huge amount. Initially we would just fix her whatever it was she wanted, because we knew she would eat it. Eventually, anyway. Eating for her has always had to be her idea. We've been doing that less and less. And often when we come to the table at dinner time she sits and throws a fit. Usually her dad and her go and have a "talk" or like we like to say a "word of prayer." Then she comes back much more willing to have a go at whatever we are eating. Some days are more of a battle than others. Someday the leukemia will be gone, for good, and the treatments will be done and we are trying not to end up with a beast in the process.

When I think back to our hospital stay and meeting with the dietitian, honestly, I laugh. Like everything else we do our best and take things as they come. In a perfect world she would eat well balanced meals that didn't included three bags of chips. We aren't there. Balance is key.

Her dad brought her this big bag of chips when she requested some the other day. We were thrilled.

Chemo Monday

We are home after a looong day at the Cancer Center.
There was issues with her port that caused some major delays. It had begun having problems a few weeks ago (when we had that short hospital stay) and today it decided it just didn't want to have blood drawn from it. The chemo nurse (Melanie, we love her) tried and tried but it just wasn't going to budge. She said sometime this happens, where a sort of scab forms over the port (under the skin) and it flushes (stuff goes in) fine but doesn't really have good blood return. She said she would push some medicine through and let it sit for a while and that would break it up so hopefully we wouldn't have this issue. But, there's always a but, that means that we couldn't draw from it today. So she went to get the little lab tech to draw blood from her arm.
And now a little back story> Last week when we walked into the cancer center the little lab girl came and got us and told us that she would have her blood drawn first. When I questioned her, since she would getting accessed, she told me that there was a test ordered that couldn't be done off the port (fibrinogen). I went along with it. She stuck her once and fished around and ended up with nothing. A few red flags went up in my mind. She went and spoke to our nurse (Dr, T's nurse, Cheryl) and then came back and took us to the infusion center where she was accessed blood drawn (a little sluggish) and no fibrinogen needed to be done.
Fast forward to today. Same little lab girl. Do you see where this was going? She stuck in her in the arm, fished, got nothing. I did a really good job staying calm. Then she suggested a finger stick. Before I could protest Melanie said, "um, no." So little lab girl said heel stick. To which I said, "ok." But in my mind I really said, "Um, that's not going to work." Longish story shorter I was right. When she was getting nothing from her heal I asked what the next plan was. Little lab girl said, "We could have Cheryl draw from her head." Again before I had time to protest Melanie (really like her) said, "Um, no." She told me later she had to stop herself from swearing at her. In the midst of this I asked for the tourniquet to see if I could find anything. I did struggle to find a good vein in her right arm but after little lab girl left I started feeling her other arm (the one she stuck and fished around in) and found a juicy vein WITHOUT a tourniquet. Melanie then left and came back with her arm full of flushes determined this time to get blood out of her port. And she did! What an ordeal.
After that she put the scab-busting medicine but it had to sit for a while. Then after all that she could start the chemo.
I was sure to share with Cheryl my feelings on the situation. You're working at a cancer center, a place where not so healthy people come with their not so healthy veins, you should be able to draw blood on anything. She completely agreed. And then when the doctor came in and I told her. She was, in a word, ticked. She told Cheryl to right a report. I typically don't like to tattle and I have, in every other aspect, had really good experiences there, but this was just unacceptable.
Throughout the whole thing Mary really was a champ.
We brought Ruth along with us. I tried to prepare her for all the waiting but she still had a few issues with it. Once they turned on the Wii she was set. She even got Mary dancing with her on the Just Dance game. It's one of her favorite songs (they danced to it a lot in preschool) and when I find her enjoying something from BC (before cancer) I soak it up as much as possible. I took a video because it was the cutest thing ever and I thought you would need a little something to brighten your day.

You're most welcome.

Baby Steps

Yesterday was chemo day. And as those days usually go by the end of them we were both exhausted.
Here's something I'm learning about chemotherapy visits. There is no such thing as a short visit. The nurse was even joking with us that they take a class on how to keep patients waiting. I'm 99% positive that's not the case but all to often I feel like whenever she needs anything done, a wait will be involved. Too often I go in thinking it will be a quick visit and then almost 3 hours later we're walking out the door. Add two hours of driving and the result is usually exhaustion.
Be that as it may yesterdays visit was a pretty good one. The big take away from the visit was that we need to get this girl walking again. For the first month of her treatment she was on a steroid that resulted in weakened muscles, which means she quit walking. After visiting with the doctor we go down a couple of hallways to the infusion center. I decided we might as well start "project get this girl walking" then. I held her/walked behind her while she yelled, "no!" "please!" and "stop!" all the way to her room in the infusion center.
When we got home I continued doing it almost anytime she wanted to go somewhere. She's not yelling quite as loud today but she isn't thrilled with this new "project" either. I also got in touch with her physical therapist and she's bringing over a walker to give her added support. I'm also planning on discussing the possibility of bring her ankle braces back. Despite what Little Miss thinks none of this is fun for me. My instinct is to carry her and baby her as much as humanly possible. In reality, though, that doesn't help her at all. Helping does not mean, doing it all for her.
Also at our visit yesterday they handed me the calendars for November and December. While I'm still in "one day at a time" mode I have started being able to look ahead a little. See what's coming. The gist of it is this, October and November should be pretty easy for us. "She will have a good Thanksgiving," those were Dr. T's words. Then come December and January it will basically suck. Those are my words. We're back on the steroid, one week on one week off, which is twice a day. In addition to all the other chemo infusions.
So given how much fun those two months will be I'm more determined to get her legs strengthened and walking again. Hoping that somehow that will make it easier.
Today the girl woke up in a fairly good mood. Wanted to sit with me at breakfast, she usually request that I "go!" And then sat at the table while we read books and did puzzles for a good while. I soaked up all the content girl that I could.

Baby steps.

Two Bits of Fun

So yesterday I thought I would have just one fun thing to share but by last night I realized I would have two. Boom. Two for the price of one. How happy is that?

*****

First things first. Mary and I are doing some virtual visiting today. We're over at This Little Miggy as part of her Special Needs Spotlight. We've visited her before but today it's all about Mary. So while Mary and I are headed off to get her some plasma in real life you can jump over and take a virtual visit with us.
Also I share a picture, for the first time, of Little Miss Mary's beautiful (and hatless) head. I don't know why but sharing pictures of her and almost no hair is a struggle for me. But the two of us are working hard to be brave.

*****

And second! Bracelets! A friend of ours has had some "Team Little Miss Mary" bracelets made, in orange of course, and they're here. You can get one too, if you'd like. They're just $5. Email Lynette at lynettecalista@yahoo.com and she will get you all set up.

Happy Friday friends!

Fresh Air

This week I have been trying so much harder to make the conscience decision to let go of everything I was hanging onto last week. Some days are easier than others but I keep trying.
Sunday night, before heading to her doctor/chemo appointment Monday, I had decided to pack a hospital bag. I wasn't sure if I would need it Monday or not. It was something I could do, though, something I could have control of. I don't know when we'll have to drop everything and get her to the hospital but I can be prepared regardless. I didn't pack much. But just having something ready has made a tremendous difference.
Her appointment Monday went very smooth. She had another lumbar puncture, which means we had to go to the hospital for it. It seems like each time we go we are recognized by more people. We saw Dr. O. this time, which is who we were seeing last week for her little hospital stay. They are both so different but they are both so good. She put her back on the medicine for the C. Diff. I think to calm my fears more than anything. She, once again, assured me that there is a light at the end of the tunnel. That everything we were doing was right. And that she thought Little Miss was so cute and she just wants to hug her.

*****

Yesterday I decided we needed some air. I pulled the double stroller out of the basement, I thought it would be the most comfortable for her. Then I sprayed off all the dust and such. After it dried I carried her outside. As I was putting her in it she said, "What?" It sounds a lot like, "what in the world are you doing to me?" But she didn't scream. Then after we had walked around the block once she wanted to keep going.
Then later in the afternoon she and I walked over to Granny and Pap's house to get the big kids after school. She wasn't quite as content with that walk but she went with it. And then she was mad that we we didn't stay longer at Granny and Pap's.
But I got her out of the house, to somewhere besides a hospital. Fresh air for the win.

*****

Which brings us to today. We had to take her to get her blood drawn to check her fibrinogen (aids in clotting) level. A few weeks ago when she had it checked we ended up having to take her to get plasma. I had hopes we wouldn't have to do that today. Fortunately we don't have to go today. Unfortunately we have to take her in tomorrow. It is low but at the same time the doctor has told us it can wait for tomorrow. So why does it keep running low? The chemo. But thankfully they can do something about it.

So far that is our week.

Check back with us tomorrow for a fun surprise!