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.

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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. 

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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.

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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.