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.
 

Weekly Update

 I asked to take her picture and she looked up and said, "cheese." At least she cooperated.

We were back to the doctor yesterday and after having a 10 day break I have to admit I was a little anxious to have her seen.
Last week she had a number of days were she had little to no appetite and we were basically force feeding her. Just as I suspected her weight was down a few pounds. In talking things over with the doctor, though, everything is still ok. She gave us some ideas of what we could do to get more calories in her and she pointed out that we were not to the point that she would need a tube into her stomach. Despite the low weight she was still full of sass which made the doctor happy to see her so vibrant. She said a few times, "she's good, and you're ok!" David made her repeat it to me. I will admit I get a little "crazed mom" at times and I there's a chance I don't think straight. In my defense, this is hard! And it get's overwhelming. And someday's are just harder than others. On top of all of those feelings that have been swirling for the past week yesterday was my birthday. I tried so hard not to get hung up on the fact that I had to take my daughter for chemo on my birthday. That thought just felt so depressing. Fortunately David had the day off of work so he could come with us. It made a world of difference. And I was reminded over and over that everything is, and will be ok. It felt good to have those reminders. And yesterday I really needed them. Yet another tender mercy.
With the weight loss I knew we would be facing I also expected the results from her blood work to not look so pretty. I was anticipating spending the day getting every transfusion and infusion under the sun. But that was far from the reality. Her results were great. In fact after her chemo infusion we were out of the cancer center in under 3 hours. It might not have been but it felt like some kind of a record.

We celebrated by going out to lunch. As in taking her into a restaurant with other people. Granted we found a booth away from people but still it was a big step for us. She didn't eat much, but was very interested in my lunch. That seems to be a pattern, her stealing my lunch. Some days I think if I had lunch money on me she would steal that too.
And now we have another long break, two whole weeks. Although next week we do have to take her (locally) to have her blood drawn. In the meantime we will be working hard on getting her to eat and drink and filling her up with as many calories as we can.

Wishing you all the happiest of Thanksgivings!

Chemotherapy Update

I realize that an update is a bit over due.
Last week our appointment was on Thursday.
She had an appointment was for a sedated lumbar puncture. Which means we had to go to the hospital. We've gotten to know the nurses and doctors there (only a handful are "chemo trained" so the ones we can see are limited, which I think makes it easy to get to know people) so I'm quite comfortable. However that day it was cold cold so of course I couldn't find us a close parking spot. And sister wasn't going to walk no matter what I did or said so I heaved her and our stuff much farther than usual. Fortunately we all survived.
The procedure for a lumbar puncture goes something like this. They get her all hooked up (the thing that annoys her most) with the pulse ox, and heart monitor, blood pressure cuff, and her port accessed. Then they give her something to go to sleep. They use the same medicine, as she handles it so well, but it's one that the body becomes a little less sensitive to so each time they have to up the dose. But it keeps her asleep and as soon as they stop pushing it in she wakes right up, like crazy fast. The actual procedure goes pretty quick. They numb the area then stick a needle in, drain some spinal fluid, then push the chemo. Once it's done she has to lay flat for 30 minutes. She wasn't having that this time around, so I just applied pressure to the injection site to prevent spinal fluid from leaking out.
After that she had two different chemo medication infusions. One that lasted 30 minutes and the other 10 minutes. The nice thing about being at the hospital is that the nurses can order her some food. Her latest food request has been soup, and even though she doesn't ask for it she loves green beans, so I ordered her some of both. And while we were waiting she downed a bowl of cereal. She was much more interactive this time, albeit slightly grouchy, and the nurses and doctors were completely smitten by her. Understandably so. Even with cancer and full of chemo this girl is hard to resist.
As I mentioned the weather has turned cold cold here (thank you polar vortex or arctic blast or whatever you're called), which means that the air is much drier. Her lips and cheeks are red and chapped. I've been putting stuff on them like crazy and fortunately she is drinking really well for me. However I'm slightly holding my breath. She is already at risk for sores on and in her mouth and the the chapped and cracked lips are like a breeding ground for cold sores. On top of that Friday afternoon her nose started to run a bit. It's still fairly clear but I still have hawk eyes on her. She hasn't had too much of an appetite but will still drink. And so far no fever.
Have I mentioned before there is no getting comfortable with leukemia?
This week we have a week off. No chemo! But we're back to the doctor's office next Monday.
Happy Sunday to you all!

What's New

We are long over due for a new update.
Fortunately, though, there is not much new to update.
Mary continues to get her weekly chemo. We got so used to Monday appointments but the last few weeks they keep throwing in some Thursdays in there too. Once again, not getting comfortable.
She is handling the chemo so well, it's almost unreal. No vomiting, she still eats and drinks without too much encouragement and only has occasional bouts with diarrhea. The biggest thing we have been combating is her sore bottom. I know it could be so much worse, though. Her lack of any major complications from the chemotherapy is a true tender mercy.
Usually she'll have a few really good days, then have a chemo day, then be a bit grouchy for a couple of days. And then it starts over.
We are still working hard on building her strength and getting her walking. We're to the point that we can sometimes get her to walk just holding on to one hand. Although she often uses the other to steady herself on anything close by. Today she'll be getting orthotic braces to hopefully give her more support. She really is moving around more and even climbs up on the couch and comes down the stairs on her own. As usual we are on her timetable and trying hard to be patient.
Throughout this whole experience I've learned more and more about treasuring experiences. I think about Mary pre-leukemia, PL, and after. There is so much that she used to do that she just doesn't. Whenever I see a glimpse of her PL I hold on to it. One such experience happened the other night.
The girl PL would often wander throughout the house. She was quite content to play on her own, sometimes, and if she wanted something she would just go and find it herself. I always felt that these things were both good and bad. Bad because I would loose her. She has wandered out of the house before so there was always that fear. I started to teach her to respond when I would call out to her. I would say, "Mary, say hi mom!" She quickly caught on and I would hear a little, "hi, mom," coming from whatever corner she'd found. It wasn't uncommon for me to hear her saying hi from the pantry. She would go in, sometimes close the door, find a snack and settle down and dig in. Once she was found it didn't always end in her favor. At the same time it was often too adorable for me to get too upset.
The other day she was move around a lot more than she had been. I let her scoot free. She went in the living room and then into the kitchen then pretty soon I realized I hadn't seen her for a little while. I went looking and this is where I found her.

Once again I couldn't get over my excitement enough to take the chips from her. Considering how hard she had worked.

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!

Lesson Learned

This week has been a hard one. With a hard lesson thrown in the mix. When it comes to leukemia you can never get comfortable. Like ever.
The beginning of the week was going pretty smooth, despite the fact that she was grouchy. By Wednesday afternoon, though, we noticed she was a little warm. We thought it was due to where she was sitting, in a leather chair in front of a window with the afternoon sun hitting it. So we gave her a bath, put her in cooler clothes and she started to cool off. By later that night she still was warm so we knew this was a real fever. I called and by 10:30 at night we were back in the hospital.
I think I was taking the "remission" a little too much for granted. Her white count was coming up, she had healthy cells. But the reality is that her immune system is still pretty fragile.
Once in the hospital they accessed her port, drew blood cultures and started her on antibiotics. Then we waited and watched. Her fever came down pretty quick but by Thursday afternoon it had come back. It was a long and exhausting day just sitting, waiting and watching. By Friday morning the preliminary results for the blood cultures were negative. Which was good but still didn't give an explanation to the fever. By Friday her fever had come down again, but was staying down without Tylenol. It was to the point that there wasn't anything they were doing for her that we couldn't do at home. So thankfully by Friday afternoon she was released and we were on our way home.
For some reason this hospital visit was more exhausting and wearing on my emotions than before. I was so tired going into it that I know it didn't help. Every now and again I get a self diagnosed tired migraine. Where my head hurts to the point of nauseousness and the only thing that makes it go away is sleep. It has been a while since I've had one and so of course it reared it's ugly head on Thursday. And contrary to what one may think sleep isn't what hospitals are known for. Miraculously, though, our Thursday night sleep was enough to make the nauseousness go away and the headache bearable. For that I'm incredibly grateful for.
Bringing her home, again, I was a nervous Nelly. Questioning my instincts to the point that I don't trust myself. I'm working on it but lack of sleep isn't helping. Shockingly enough. I slept in the recliner close to her bed last night. So I could hear her sleep and be just a few feet closer to her when she woke up in the night.
So now we seem to be battling another, or the continued version of, her stomach issues. I've already called the doctor and she is working on finding a pharmacist that we can get some medication for her.
So, again, lesson learned. No being comfortable. Got it.

*******

This evening Ruth and I will be attending this. I am in desperate need of some spiritual enlightenment.

Tender Mercy

Yesterday was Monday. Which means yesterday was chemo day.
It was a fairly easy one. All she had was a lumbar puncture.
I say that like having a needle in your back, and then having spinal fluid taken out, and then yellow cancer killing goo put in through said needle is all so very normal. Even so it was a fairly quick procedure and we weren't there very long.
The past few days have been good ones for Little Miss Mary. She is smiling and interacting more. On Sunday she even scooted on her bottom across the room. Yesterday evening were having our Family Home Evening and she was slightly distraught over it. So I just stood up and held her, which settled her down somewhat. Then I noticed she was squirming a little, so I turned so she could see what was happening with the little lesson that Aunt Cherie had on the floor with brother and sister. Then I asked if she wanted to sit with sister, which she quickly nodded. So I sat her down and she happily (for her) soaked it all in. Then David felt impressed to ask her if we could sing what used to be a favorite song, Jesus Wants Me for a Sunbeam, to which she nodded. Then as we sang she joined in. Again he felt impressed to ask her to say the closing prayer. Typically she sits and fusses during family prayer but she nodded again then offered the prayer in only the sweet way that she can. The whole experience, which probably lasted about 10 minutes, was truly a tender mercy. What a huge glimpse of our little girl and what a huge blessing! I have to say the rest of the evening both her parents were a bit on cloud nine over it.
So we have been asked a few times what the plan is for her now that it appears the leukemia is almost gone away. The reader's digest version, we keep going with treatment. Considering one cell could potentially cause everything to go awry again continuing to treat will ensure we get rid of any that might be hiding inside her little body.
Fortunately the next few weeks will be fairly easy. We'll get to a point where they will wipe out her immune system again. For right now, though, her immune system is pretty healthy. Having said that we aren't taking any chances and continuing to limit her contact. We're continuing our hand washing regiment and almost continually cleaning any surfaces she might come in contact with. Like I said, not taking any chances.
Happy Fall everyone!

Results Are In

                  

In other words, we're in remission!!

I spent a good little while on he phone with the nurse this morning hearing things like, "we've achieved remission," and, "no lymphoblastic cells seen," and, "no abnormalities," and that lovely little "r" word, "remission."

I have so many emotions right now it's hard to process. I'm once again overwhelmingly greatful for the power of prayer. And the knowledge that our Heavenly Father is incredibly aware and mindful of each of us.

This morning while the girl was having her 4:30 slice of pizza I found myself saying a silent prayer. I felt strongly that she would be healed but my continued patience will be required. Even with this news of remission we are not at the end of our road. We still have quite a ways to go. We still have many more treatments, and late nights, and early mornings, and doctor visits, and blood draws, and snuggles and back rubs.

No, It is not over. But that doesn't mean that we won't be partying all weekend long over the news we've had today.

"Nothing can take the place of prayer...Let no day pass without it."

President Ezra Taft Benson

Still Waiting

Before I get to all the fun I'm having waiting I want to hgive a quick update. 

By Momday Mary was still struggling with some bowel issues. I had thought we had gotten rid of what we thought was a blockage but she was still having issues. Stinky story short they discovered she has C. Diff, which is one of those not good so good bacteria that affects the gut. So we have more medicine to give her to get rid of that.

Back to the waiting

We are still waiting on our final test result from Monday's bone marrow biopsy.

I had thought we would have something Tuesday but the doctor told me Monday it would probably be Wednesday. And now it's Thursday and we still don't have it. From what the nurse has told me, and believe you me I've chatted with her a few times about this, the fact that we don't have what we've been waiting for is purely a clerical error. Some of e report have come but that one number I want, the one that determines where we go from here. The one that tells us just how well treatments are going. Yeah that number. That's the number we don't have yet.

Here's what I do know. On Tuesday Dr. T. looked at the slide of her bone marrow and told us that it looked beautiful. That it was full of healthy, happy cells. Just how happy and healthy we won't know until we get that final result. We also know that from the tests run, in one million cells there were no blasts found. Which I think means there were no leukemic cells. Both these things are very encouraging but I still don't feel like I can breath a little easier, and start partying, until that final result. 

As if she knew I would need something to distract from this wait Little Miss has been smiling today! It's been a breath of fresh air to see that smile again. And I'm loving everyone she hands out.

Day 29

When we were in the hospital, and had Mary's leukemia diagnosis confirmed, Dr. T. handed me a calendar for the next three months. She pointed at today's date and called it Day 29. Then she told me everything they would do on this day, and what it would mean. It might as well have nbeen 20 years away, that's how far from Day 29 I felt.

But now we're here.

Day 29.

At the moment we are still sitting in the hospital, waiting for her chemo infusion to finish. The lumbar puncture, wih chemo injection, is done. The bone marrow aspiration is done. And the first chemo infusion is done. She did amazing throug it all, especially since she hadn't eaten since the night before. As soon as she got in the car she asked for french fries about every 10 minutes. After the procedure she woke up righ away and once she saw us started asking for food.

And now, as is the common theme, we wait. 

******

A little Mary update. We are still dealing with her tummy issues. Which have created a very sore bottom. It's so uncomfortable for her so we're trying our hardest to make her comfortable.

She is eating and drinking like a champ. She usually requests french fries, a sandwich or pizza. 

Sleep is really hit or miss. In part, I think, because of her tummy issues.

She is still very weak, she won't bare weight on her legs unless really forced. 

And the hair is mostly gone. She has a number of wispies, kinda like cotton candy. I'm not sure if the rest will fall out or not. It knots up in the back so I may need to do something with it. I'm working on being brave enough to post pictures of her.

******

We will be back as soon as we hear the results from today. Thank you for your continued prayers!

One Huge Update

Yesterday was another chemo day. It wasn't as long as last week was but still so exhausting for both of us.
Let me back up a bit. By Sunday she was eating (lots of sandwiches) and drinking so good. I was thrilled and to be honest, looking back, a little too comfortable.
Monday morning started off busy. Her appointment was earlier than the week before so as soon as I had the kids ready and out the door I needed to get us ready. I've designated a "treatment" bag with some things in it but there are other little things that I need to remember the mornings of her appointments. Then in addition to all of that our van had to be taken into the shop. I got everything done and where it needed to be, finally, and we were off. Granny, again, came with us.
When we got to her appointment was when I realized i had forgotten to give her her morning meds. Big fat face palm. Fortunately they were able to push one, the important one, through her IV.
She was incredibly feisty during the visit. And while her sores on her mouth are finally healing, she picks at them which is make that healing take longer. And her weight has gone up. So that was, of course, good news.
We talked about next weeks visit, I'll get to that later, then headed over to the treatment center (down a couple of hallways). Because of all the feistiness I expected her to fight through the accessing procedure, but she didn't even flinch. With her iPad in hand she just laid around for the whole treatment. She did give her a bag of fluids, to error on the side of caution, and then had her morning med through the IV then had her chemo for the day.
As we were leaving I noticed her cheeks seemed a little puffy. By the time we got home her face was much more swollen and her stomach was a bit firm, but not solid. And she hadn't had much by way of wet diapers. She was also pretty fussy most of the way home and just wanted a cuddle. Once we got home she settled into her spot on the couch and was doing much better. Although she did start sweating like crazy. I called the nurse because the swelling was concerning to me. She called me in a prescription for lasix. It was evening by the time I was able to get it and come back and give it to her. I expected it to work pretty quick. Of course it didn't, though. It took most of the night in fact. She fell asleep on the couch and all I could do was sit and watch her. I had to wake her up to give her her evening meds (I've learned my lesson and set alarms on my phone), which of course ticked her off. Fortunately she was ready to go back to bed as soon as we were done. I took her upstairs but again all I could do was watch her, and pray.
She was also having a gas issue. She had a couple of bowel movements in the afternoon/evening but was still so gassy. I knew that was why her stomach was so firm. Throughout the night she would wake up every hour and half to two hours very much uncomfortable. I finally took us downstairs where she could be loud in her frustrations and not keep anyone else up.
At around 1 she finally had a wet diaper (she'd had a couple in the evening, but not as wet as they should be) and then at 5 the flood gates really started opening up. By 8 or so this morning I could tell that she was feeling better. She was asking for her sandwiches again (always meat ones) and would even drink for me. Such a relief! But I was oh so very tired. David decided to take the day off and so I was able to go back to bed. So very grateful for that.
I think this experience over the past 24 hours has taught me not to get comfortable. Like ever.
So next week. Monday we go back to the hospital for her to have another bone marrow biopsy, have another lumbar puncture and have a few different chemo infusions. It will be a huge day. Her bone marrow will again be sent to a lab in Nebraska. They will test for her minimal residual disease. To see what is left of the leukemia. We need the number to be less than 1. Really, really need that. If it is not then we will continue the induction phase of treatment for two more weeks. But I'm praying that we won't have to. So I need you to do the same!
In a couple of hours I leave to pick up my mom at the airport. I'm so ready to have her here. My mother-in-law, Granny, has been phenomenal helping in so many ways. I have so appreciated all that she has done for us. I was thinking the other day, though, that Miss Mary often just wants me. She wants to know where I am and that I'm close. She usually doesn't know what she wants with me, just that she wants me. That's how I'm feeling. Mom's are pretty powerful, in my view.

A Little Update

Each day this week has been a little easier than the day before.

For the past two days, as well as today, I've taken her to the hospital (just a couple miles from our house) for her to get IV fluids and IV medicine for her mouth sores. It has improved her sleep drastically.  In fact last night we slept through the night! Which meant this morning I woke up in a panic. But she was fine, I was fine, everyone was fine. 

Another huge step is that last night, and is morning, she has willingly drank something! Huge improvement as she hasn't done that in days. Hence the IV fluids. She doesn't willingly drink, though, when taking her meds but I've discovered that after I get the pill in her mouth I just squirt some water in with a dropper and we're all good. She fights it but it still goes down.

Something else that's helping with the eating is a little thing called "magic mouthwash." It's a prescription and it really says "magic mouthwash" on the bottle. It's a combination of stuff that the pharmacy mixes up. Essentially it numbs things up a bit making eating and drinking not so uncomfortable. I've once again found that if I use my trusty dropper and squirt some in her mouth it goes down and a little while later she's ready to eat three or four chicken sliders (true story). That's not to say she isn't ticked when I do it, but she gets over it eventually.

In other news William came down with a low grade fever yesterday at school. He has been quarantined to Granny's house. He called me this morning to say hi. Apparently he's not that broken up about this new situation. Ruth seems fine, thankfully. I did make her shower when she came home, just in case. 

This weekend she's off the IV fluids so we're praying that she will keep drinking. And then we go back to see he doctor for another infusion Monday.

Chemo Day

Today was our first visit to the Cancer Center. All her previous chemo infusions have happened while we were in the hospital so I didn't quite know what to expect. I knew, though, that we would see the doctor first and then the infusion itself would take about ten minutes. 

Mary has had sores on her lips, and a few in her mouth, basically since the beginning of all of this. It has come to the point that eating and drinking are painful. She will eat ok, getting her to drink, though, is so very difficult. She asks for something but when it's in front of her she cries and pushes it away. I had thought that they were from one of the medications so this is just something we would have to "tough it out."

When the doctor fist saw her she was very concerned about the sores and the fact that she was dehydrated. So the first thing she determined was for her to have IV fluids while we were there. Then she decided to take swabs of her sores to be cultured to understand exactly what we're dealing with. She believes it's a virus (think cold sore) that since her immune system has been striped away has gone all crazy. And most likely are all down her throat. So in addition to the fluids (which ended up being two different bags full) she also recieved an IV medication for the sores and then last, but not least, the chemo. So what I thought might be a quick visit turned into an all day affair. 

Something else the doctor pointed out was the fact that she was dehydrated was making it very difficult for her to even swallow her own saliva. Which is the very thing that has been keeping us awake all night. She was so exhausted by the time we got there that slept through them accessing her port. Which means they stick a needle in her chest, although I had applied a numbing cream before we got there. Then she continued to sleep while they ran her first bag of fluids. And really sleep, no coughing and waking up crying. When she did wake up she started asking for french fries. We had brought Granny with us so she offered to run out and get her some. She ended up eating all her chicken nuggets (then asked for more), then all her french fries and about half of mine. But still no drinking. 

She had so little energy throuout the day. She would only nod yes or shake her head no. She talked very little. She took another snooze on the way home (we are an hour away) and then was ready for bed before 7:30. Although she did eat a little for dinner when we got home. 

For the next few days the doctor has set it up for us to go to the hospital here in town and recieve IV fluids and the IV medicine for her mouth sores. She still has her port accessed so all they will need to do is hook her up and run the fluids. I hope that this will give her better rest at night and a little more energy during the day. 

September

When we first learned about Mary's diagnosis I made it a point not to consult "Dr. Google." During our time in the hospital I was daily given a near constant stream of information to process. So there really was little time for me to do so, even if I had wanted to. Having said that there was one thing I was curious about. Everything, it seems, has an awareness month or at least day. So that was my "Dr. Google" search, to find out when leukemia awareness month was. Imagine my surprise when I learned that it is September. The timing is unreal. In addition to that September is also Childhood Cancer Awareness month as well. So there you go, a two for one. Of you will.

In Mary news her hair is falling out.

The first night in the hospital I asked the nurse, who was answering my constant stream of random questions, if her hair would fall out. She told me that it probably would, if nothing else would it definitely thin. After today I would be surprised if all it did was thin. So much has fallen out today. She already has a bald spot on the back of her head. I just have to slightly pull at the ends and it out it comes. She is a hair twister. So she twists and twists and then ends up with hair in her hands that she shakes off and grabs more hair to twist. I felt like I was constantly gathering hairs from her back, and clumps from her twisting. 

When we told the kids about Mary having leukemia she had already been given chemo that has a side affect of hair loss so I knew I had to tell that that this was a possibility. Of all the things we talked about that night Mary losing her hair was the thing that concerned Ruth the most. She thought she wouldn't be able to recognize her anymore. As so much of it has come out today, and when we pointed it out, her response was, "So is today the day her hair comes out?"

I don't know why but in the beginning of this I had hoped that the hair falling out would come later. Sometimes I can't believe that we're really living this. That "leukemia" and "cancer" are words we use almost everyday. Words that apply to my baby. But I am careful to not ask "why?" I know that won't get me far. I can only pray for strength to carry us. For patience. And for faith. And for a whole host of other things.

Everyday

These past few days of being home have been rough. Roughity rough rough.

We were at the point early this morning that I finally called he doctor. I spoke with the pediatric hematology oncologist on call, which wasn't Dr. T it was her partner Dr. O. She spent close to ten minutes doing nothing but assuring me that everything she's doing is normal with the meds she's on. One medicine in particular, which is a steroid. She promised me it was killing all the cancer, and that on its own it could get her into remission. But the cancer would come back so she has to be on all the other stuff too. So all the crying, the awake every 2-3 hours at night, the frowns (it's been days since we've seen her smile), all the asking for something then not wanting it when it's in front if her, all the fussing will all be worth it. And in two weeks she'll be off that dreaded stuff! When we were still in the hospital and Dr. T. Was talking me brought the next month I remember her point out he day that she could go off the steroid (14 days exactly, not that I'm counting) and said something like, "and on this day we'll be done with it, thank heaven!" I totally get it now.

I'm not going to lie, with all the roughness, and lack of sleep, my emotions have been all over the place. I could feel the doubts and the hopelessness and the guilt creeping in. But today is a new day. And while she is still in the same state she was yesterday, I'm not. Everyday I have to learn that lesson of how my attitude can change our day. Everyday we're one day closer than the end of all of this. Everyday I can find something to be happy about. Everyday I can find joy. It's all a matter of choice. And somedays that choice comes easier than others. But I'm going to hang tight to these days where the choice is easy. This are the days that will help me through the tougher ones. And there will be tougher days.

So today I'm going to be grateful that she asked for, and more importantly willing ate, something besides french fries (two poached eggs!). 

Home

We are home!
It hardly seems possible, but we are home.
Yesterday morning they did her lab work early, thank heavens, and while her WBC count had come down, her platelets were holding steady and her ANC had gone up to 105. It's not 250 but the doctor was concerned with keeping her at the hospital too much longer. We run the risk of her picking up an infection there.
And then we waited, forever, to finally be set free.
We didn't get home until the afternoon. I quickly found out the longer I was home the more exhausted I became. The weight of the past 10 days suddenly felt heavier. This whole ordeal becomes more real. My emotions are that much closer to the surface. At the hospital I had one thing to focus on and at home I have about 24,000. Combine all that with the fact that I was so physically exhausted.
I will say that being able to sleep in my own bed did wonders.
So how's Mary? That's a question I hear a lot of and I don't always know how to answer. "She's fine." or "She's doing ok." Always seem to be my go to. I'm starting to realize though that I have to be more real. More real with myself and more real with anyone who asks. She has a life threatening disease. She is at such a high risk of infection it's scary. These things are not ok. So how is Mary? In one word she is cranky. On second thought that might be an understatement. She never knows quite what she wants. And if I need her to do something, and it's not her idea or at least approved by her good luck with that. Which I'm told is due, in part, to one of her meds (you know the one that causes irritability?) She is also weak and not wanting to be up and moving around much. She frequently asks to be carried around. She has a sore on her lip that is cracked and bleeds from time to time, that just hurts. I kind of think everything must hurt. This evening as I was holding her she just started to say, "All done." I feel the same way.
I feel like I'm a first time mother with a newborn again. Not because of the constant care but because I constantly am not sure from one moment to the other what's "ok" and can be filed under the "new normal" or what is not. I'm constantly taking her temperature. Constantly just checking on her. The doctor has given me a list of reasons to call her. They pretty much boiled down to, "If you feel like something is off, call." She even told me there was no such thing as a dumb call. For the time being she has more confidence in my "mother's intuition" than I do.
We had to take her to have her blood drawn today. Fortunately we were able to do it here in town. All her numbers were about the same or slightly lower as yesterday. So for now we just keep doing what we're doing. Our next visit with the doctor and her next infusion (this will be through her port) is on Tuesday. As of right now I don't know if we will need to have her blood drawn again between now and then.
I found this today.

I think that pretty much sums up how we're functioing.

Five minutes at a time.

Amazed

This morning, in the very early hours, I was woken up by a little voice saying, "Mama, come here. Mama, come here. Mama, come here." And it continued until I was awake enough to hear her say, "snuggle." I crawled into bed with her and held her until I thought she was good and asleep. I started to slowly move away when I heard a firm and definite, "no." So there I stayed for the rest of the morning.

Even in those early hours I had a feeling of amazement come over me. I was amazed at how well she knew her needs and then communicated them. I don't think I've given her enough credit when it comes to her understanding her body and how it is feeling. One of the side affects of one of the medications she's had can be an ache or soreness in the jaw. The other day she was pointing at her teeth but I couldn't read exactly what she was telling me. Then later the doctor reminded me of this possible side affect so I told her what Mary had been doing. She was impressed that she was so specifically showing where her pain was. 

So in those early hours of holding her I was given a gentle reminder to listen, listen to her and what she's telling me. Let her be in charge, when she needs to be in charge. As much as I wish I could take this away from her and take her pain away there is no way for me to know exactly what she's feeling. I have never lived through what she is living through. The only way for me to know how to help her is to listen.

So, right now the length of our hospital stay is dependent on a few numbers found in her daily labs. Today I learned now to calculate her ANC number. ANC stands for absolute neutrophil count, and from what I'm told this calculation will play a large role in our lives over the next couple of years. I'll save what it means, and how to calculate it, for one of my "education" posts. 

For us to go home that number needs to be at least 250. This morning she was at 88, which was twice what it was yesterday. In addition her platelets need to be above 10. I'm trying hard not to hold my breath and take things as they come. Chances are though, either way, there will be some pressure releasing tomorrow.

The Hurry and The Wait

Here's how things sometimes goes here: hurry, rush, let's go here, now we wait.

It's super fun. In all reality I've learned to just live we it. 

This morning she was up a little earlier than the past couple of days. It wasn't long before she was pointing at the menu. Every time I order her food I'll get the menu out and ask her opinion. The sad thing was that because she was about to be sedated she couldn't eat. We didn't have to wait too long before I took her down the hall to where the procedure would take place. There was a TV in the room so thankfully she had distraction while we waited. 

I had gone back and forth but finally made up my mind that I would stay in the room this time. To which I'm still giving myself fist bumps about. 

Once everyone was there that was supposed to be there they gave her medicine to fade her out. This wasn't as powerful as what she was given in the past. She was properly zonked out, though, even though her eyelids were fluttering here and there. 

As they were getting her in the right position (fetal-like position) they realized her diaper was really full. There were no diapers in the room so I ran back to get one. The pediatric hospitalist (the hospital pediatrician) saw me running and immediately asked what was wrong, when I told him he laughed and said, "oh that's not an emergency, well maybe it is." Once I got back, with diaper in hand, the doctor took over trying to change her. Then she immediately started asking which way it went. I seriously love our doctor. Just watching her perform this procedure, and how she directed people, and how she insisted that everything was perfect for her patient, reaffirmed my faith that we are right where we should be.

Just to run you quickly through the procedure, she sticks a tiny needle in her back and removes a small portion of her spinal fluid (I believe it's twice as much as she injected) then she takes the syringe full of yellow cancer fighting chemo and injects it into he same spot. The procedure was quick and about five minutes after the injection she was already waking up. She had to stay on her back for 30 minutes to allow the chemo to distribute throughout her body. That was one of the trickiest parts. We were able to move the bed so she had a clear view of the TV. Sadly about 15 minutes in a different show came on, one she did not want to see, so that caused some issues. I think it's important to note that the very show she was mad about was the one she had been asking for all week but never seemed to be on when we turned the TV on. 

During the laying flat for 30 minutes they ran another chemo med through her port. It only took about ten minutes. Someday I'll write some posts all about what this leukemia is doing to her and all the medicines that she's being given to attack it.

Dr. T. Told us after it was over that the rest of the day would be a "boring day." I kind of love that I have a doctors prescription for boredom. We spent it on iPads, taking naps and watching a little Duck Dynasty in the evening. I was supposed to get her up and walking but could never convince her to. However she did ask to use the bathroom a few times so she had to get up and walk there and back for that. I'm calling that good enough.

By this evening she was once again so tired and ready for bed. I'm not sure if it's the meds or the weeklong stay in the hospital that is wiping her out. Most likely both. 

The hope is that we go home soon. It all depends on what her labs look like in the morning.

And now a word. Mostly because I feel impressed to share this. There are so many opinions on this and I want mine to be clear. I have faith in medicine. I have faith in modern technologies and what advances they have allowed to take place. Without it I would, very literally, not be here. I have faith in the people who have studied and researched medicines, and therapies and ways to put it all together to save lives. I believe that those people were given gifts from Heavenly Father that allowed them to make those advances and discoveries. I have faith in the medicine that they are giving my sweet daughter.

And with that I'll step off my soapbox. For now.

Quiet Weekend

This weekend Miss Mary has been sleepy. She slept all evening yesterday and pretty much slept through the night. As much as anyone can sleep through the night in a hospital. 

She is most definitely tired of being here. Yesterday morning she kept telling me she wanted to go. And when we went on our walk and did not go down the elevators, well, she did not hide her displeasure.

While I can still get smiles out of her every now and again her mood is most definitely just sad. Her mood greatly affects my mood, I'm noticing. Yesterday after the sad wake up I was eventually able to get her back to sleep. I felt sad with her. I felt the heaviness. And I had my pressure release. It was strange to feel hopefull and peaceful about this situation but at the same time feel the weight of it. 

Fortunately after her nap she woke up in a much better mood. Of course she was until I made her take a bath. I will say that I bribed her with a popsicle, not above it.

Late Saturday afternoon she announced bedtime again and we both took a snooze. That evening we had visitors, that she slept through. It was nice to sit and talk things through, and answer questions. One even brought me a "mom hug." 

Mary finally woke up around 9. She had to take her night time meds and have her vitals done. I expected her to be up half the night but it wasn't long before she started announcing bedtime again. 

In the morning she once again woke up just kind of sad. After some snuggles she was finally willing to sit up and eat. We had visitors in the morning, David brought the kids. Loved just sitting and talking and watching them interact. Ruth just wanted to play with Mary's new stuffed animal and William stood over her giving her drinks, of course rotating through them all. He's a pretty awesome big brother.

After they left we had a little quiet time before we had more visitors. Ms. Kim the kids' preschool teacher came, with two of her girls, to see the girl. She had Mary in her class for the past three years so they're quite attached to each other. She visited a little. Sang along to "Let it Go," and said "oh, Kim!" Every time she looked up and saw her.  We tried to go on a walk but she wasn't having it and insisted on being carried."

She did take a little nap in the afternoon. Woke up, though, when they started her platelet transfusion since they have to take vitals pretty frequently. 

For meals she ate breakfast and lunch pretty well, but just picked at dinner. By evening time she just needed snuggles. 

Lab work the past few days has shown her platelets low, WBC count decreasing, and hemoglobin low but sort of steady. The numbers make me nervous but Dr. T. has assured me that she's doing exacting what she should, in fact I think she used the word "textbook."

She had the transfusion this evening in preparation for tomorrow. In the morning she will have a lumbar puncture wih an enjection of chemo into her spine as well as an infusion (through her port). They will sedate her for the lumbar puncture, which she handled fine last Monday. Just took her a while to wake up. We will also start preparations to work towards going home. I feel like there's so much I need to know before I take her home. I'm nervous to leave the "hospital bubble" where almost all of her care will go to me. 

                                

On the other hand the two of us are oh so very ready to be home!

Another Busy One

This morning sister thought it would be fun to see what's happening in the world at 3:30 in the morning. Despite my efforts to convince her nothing at all she wasn't having it. She kept asking for the light or her glasses our would just say, "Oh! Mom!" The nurse took her on a short walk then tried to convince her to go back to sleep, she wasn't buying it. When she started to ask for cereal I decided to admit defeat. We got her some cereal and she fed herself! She hasn't really been motivated to do it herself so she has kindly been letting me feed her. She only ate about half of her cereal before laying down and again announcing "bedtime" and thankfully fell back to sleep. 

In the morning, the real one, when the nurses came in to start their morning stuff she woke up and wasn't happy about it. After all the stuff she dozed off for a little while longer. It wasn't long before she woke up and started asking for cereal. When it's her idea to wake up things tend to go a little smoother for her.

Lab results showed that her WBCs have continued to decrease. I know this is how it's supposed to go. Chemo basically wipes out all the bad, leaving her with very little. It still makes me nervous to know she's got such a low white count. Dr. T promised me that her bone marrow is working quickly to make healthy cells and get them circulating. Her platelets stayed about the same. Her hemoglobin was once again lower so she did have to get a little bit of blood. The doctor didn't want to give her too much or her bone marrow would stop trying so hard to make pretty healthy cells. Despite her low hemoglobin she was still sitting up, watching her show while playing on the iPad and eating cereal. And it also didn't seam to be putting stress on her hard.

Another piece of randomness. When they take her blood pressure using a machine it shows a little on the high side. When they do it manually, the one they tell me I should believe, it's within a normal range. It's weird to me that she has that much power over a machine, which she clearly doesn't like. I think it's her wasps of getting back at all the poking and picking and waking up before she's ready. She's making them work harder.

So, as I mentioned yesterday today was an infusion day. They did it this morning. When they do an infusion it's hooked up to the IV pump and goes directly into her port. Just as everything else does. Except for the meds she takes by mouth. The nurse that hangs it has to wear a gown and double glove. It's serious stuff. Then they have a bag with CHEMO written all over it. Good news is Mary can basically do whatever she wants while it's infusing. We don't go on walks during that time, I haven't ask if we can or note frankly I'd rather not parade her around the hall with a big chemo sign attached. 

After chemo then came the blood. So busy morning! Around noon was when things quieted down, I had felt like my morning disappeared in a flash. Sometimes I can't believe how busy I can be in one small room all day. It's exhausting. The good news is I have been promised a day of sleep once we get home. Can hardly wait.

We had visitors this evening! David and the kids came. For the past number of weeks Fridays have been our pizza and movies night. Ruth suggested we do the same thing. That girl, and the things she thinks of are incredible. (FYI grandmas when we passed a park while driving around she suggested we have a "grandma race, where they walk fast and race." No idea where that came from but good luck with that.) One thing I learned was that apparently all my ability to be patient left me when I walked out the hospital doors. Going to have to work on that.

Mary was asleep when they came so I left right away with the kids while David experience some of my quiet, boring hospital life. I decided that I needed some new yoga pants for all the hospital yoga I do, so a Target run seemed like the only option. Then we ran to Pizza Hut to grab a pizza and get back. 

Mary had been woken up, before she was ready (which annoyed her father greatly) and was having some issues. The fact that I wasn't there didn't really help matters. Apparently she even asked her dad to leave a time or two. They had gotten her settled by the time we got back. But once she saw me and the kids all was right in her world. After pizza we went on a walk. The big kids were thrilled to take her into the play room, even if it didn't last long. When we were headed back Little Miss wanted to go see the elephant picture (the walls have fun pictures of animals and we have to stop and identify just about everyone) which took us down another hall. There was a volunteer who brings his service dog to see the kids in the hospital making his rounds. Mary actually saw them the other day but wasn't that interested. This time though she got closer to her and pet her. The big kids were, of course thrilled. By the time we got back to her room it was time for them to head home. I was able to get her to eat most of her dinner, even if I was feeding her. Around 9 she once again announced bedtime. I'm really starting to wonder if these bedtime announcements will carry on when we get home. It's kind of nice. She usually pats the bed, for me to lay next to her then reminds me to take off my glasses. Sometimes it's sweetness overload, with that girl making it so hard to resist! 

What About Mom?

I get asked a lot how I'm doing with all of this. 

I won't pretend that it's not overwhelming. I won't pretend that it won't always be overwhelming.

But really, I'm doing fine.

I've heard many times that grief comes in waves. When your child has been diagnosed grieving is necessary, I think, to acceptance and to your outlook. I've learned this before, twice. But both of those times grief felt more of a mountain to climb and once I was on the other side I felt freer and able to move on. Now having a child diagnosed. with leukemia I'm starting to understand the waves a little more. There are moments when it hits me. When I realize something that I had not thought of before. Or when I walk out of a room wih her laying sedated on a table. It comes crashing down. But as waves do it settles then washes away.

For months now I've known something was coming. I, obviously, didn't know what or when but I've had a feeling for months that our lives could turn and turn quickly. Unfortunately, I let many of those feelings of doom consume me. I could see myself living in fear, dreaming up scenarios. Worried when David was a little late from work, worried that something terrible would happen to my children when we slept. Worried, worried, worried. It was unhealthy, and I wasn't happy but I was starting to feel crippled.

Then a few months ago someone started posting about the 100 Happy Days project. When I read about it I really wanted to try it but was worried I wouldn't make it through the whole 100 days. In my mind I though it I start it then something horrible would happen. I decided to go for it. I decided to choose happy. While it didn't happen over night I could see a change in my outlook just by finding something, anything, to be happy about each day. And I guess I was sort of right, something pretty awful has come I our lives. But I see now that there's something everyday that I can choose to be happy about.

Last month I got news that a friend's husband died suddenly. A friend who is near my age with three small children. My heart was crushed. I felt helpless. As I poured out my heart in prayer the thought came to me to share words of encouragement. The only way I knew how to do that was Instagram and Facebook. So that's what I did. Each day as sat down to find words that would uplift her a word would come to my mind to search and I always found something a phrase or a scripture I knew I needed to share. That little project, what I called the lifting hearts project, changed me as well. I came to see that when we are looking for ways to serve and help one another Heavenly Father will proved all we need. It was overwhelming to see and feel a small glimpse of His live for us.

So what does this have to do with how I'm feeling about Mary being diagnosed with Leukemia? I guess you could say they've prepared me for it. Again I'm not saying that here in a couple of months I won't be failing apart at thee seams. But for right now, for today I'm fine. 

I also have been amazed with how well the nurses are taking care of me. One nurse, who was here the night we arrived, came back each day she worked and came in just to check on me. She wasn't even assigned to Mary. Her and another nurse got me a notebook that first night so I could start writing. And processing. They find me hot chocolate each morning, even though I'm sure I'm the only one in the hospital drinking it. One day another nurse pretty much kicked me out of the room, so I could have a moment or two away. They answer my continued stream of questions, they sit and chat and so many of them constantly ask what they can get for me.

And then her doctor, Dr. T. Each day asks how I am feeling. She asks about how David is feeling and how the other kids are doing. When I tell her they're coming to visit, she always says, "Good, good." (Just to give you a visual, one nurse described Dr. T as like Mrs. Doubtfire, I think it fits pretty close!)

Like I said I have been amazed, and that's just the hospital staff. That says nothing of the continued love, prayers and support from our family and friends. And I won't mention how much of our laundry that Granny has been doing. 

When we have the team behind us that we do I can't help but feel strengthened! 

Boring Day

This morning when Dr. T. came in she announced today was going to be a boring day. Three cheers to that I say. Again we had to focus on getting her up and moving. The doctor was thrilled with her lab results. WBCs back down to 10, platelets 17, but all her own and Hgb 6.7. Very low but she looked good and Dr. T. wasn't quite ready to transfuse yet. She also had more results from the bone marrow biopsy. Her "type" of ALL is pre-B cell ALL. 

We had a good night last night. She was soaked in the night so we had to wait out a linen change which annoyed her but she wasn't beyond reasoning with. In the morning she pretty promptly shoved her mask off. I decided to see how she'd do without it, fortunately she was mask free all day! Except for when she snoozed.

I forced her out of our room for a walk, which since she only made it about three feet turned into a ride. She protested loudly most of the ride. I'm sure her fellow patients really enjoyed that.

It took me all morning but I was able to feed her a good amount. I had to sneak bites in when she was distracted. Incidently one of the side effects to one of (the many) meds she's on is irritability. My question is what if the patient was already irritable?

Granny came for another visit and we were able to get her out for another wagon ride. This time her protests weren't as loud or frequent. Granny is pretty good at distracting, both of us.

The afternoon was just what it was supposed to be, boring. And by boring I mean I was busier than I am at home. She slept and I fielded people. It seems there are times when we have a steady stream. The social worker, the guy checking her port, the respiratory therapist, I could go on and on. I've stopped encouraging her, when she's awake, to greet people. Wondering if I should do the same. 

She woke up in a good mood. Ready for movement. David came and as soon as he walked in he was grated with a, "hi daddy!" I will say despite everything she has most definitely retained her sweetness. Since she was so ready to move we headed out for a walk, no wagon this time. We did our lap and since the toy room was empty we went in there for a while. As we were leaving one of her cords got stuck but she kept moving, she fell cords, came apart, I freaked out fearing the line I to her port was ripped out. I did a quick check, all looked ok except for the blood in the tube, then sent David to find a nurse. They came quickly and came to my same conclusion. I got her back to her room where the nurse flushed her port and attached new tubing. What a relief.

After resting a little while she wanted out of the room again but she was so sleepy I really didn't think she would go far. As I came closer to her she pointed at my left shoulder which is code for "carry me." I carried her down our short hall then let her walk back. 

Now the job of trying to get her to eat. David had run out and gotten us some food. When he offered her his fries she took them, then continued to munch on them. Which is huge since she was feeding herself. She also gladly took his lemonade off his hands. When her food came we had a mix of her taking bites on her own and me sneaking more in. She really didn't eat much but the fact that she's starting to feed herself is encouraging. 

Starting at around 8:30 she began announcing that it was bedtime. She handed me her glasses then pointed next to her on the bed, code "mom lay down its bed time." When I finally did she took off my glasses and pulled the rubber and out of my hair. Such a bossy one, if you ask me. It took her a while longer to go to sleep so we snuggled and talked about tomorrow. Feeling blessed by this girl.

Tomorrow is another chemo day.

Deep breaths.

***And now we're up to date! Whew! I will continue to post updates on how and what's she's doing and I have some other things I want to share as well. For me this week has been a week if questions. I'm trying to learn as much as I can. If you have questions please ask in the comments! Ask about anything. And if I don't know I will find an answer for you.***