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.***

Maintenance

After such a hard night I was so grateful to have a day with no procedures. And after such a long hard day and night she just wanted to rest, not that I blame her. But our main focus for the day was to get her moving. In the morning we tried a walk. She would walk a little then sit. Then repeat. When we were finished as she was trying to climb back in bed her legs were shaking. She was, of course, exhausted and fell asleep not long after. When she woke up the nursing students gave her a bath and were assigned to play with her. I decided to take advantage of that time and get some fresh air, literally. I walked outside and since there were no benches (think I went out the wrong entrance for benches) I found a place to sit in some rocks. I had my daily pressure release.

It didn't last long though. 1. It was hot outside (I've been living in a season of sweaters and fuzzy socks on the inside) and 2. Bugs were starting to crawl on me. I took the rest of my little break inside on a comfy chair. 

When I came back to her she was pretty much zonked out again. So I just let her rest some more. Getting the yucky stuff out of her body is hard work. 

She didn't sleep too long and when she woke up she was fussy, wanting to be held. As I held her she said, "Mama, I hurt." My heart nearly broke in two. I asked her where and she pointed at her stomach. A common side affect to one of the meds is nausea but she also hadn't eaten in quite some time. I had the nurse bring us a buffet. Jello was the clear winner. I ordered her some real food as well. Since I was the one feeding her she ate a good amount. The only problem was she still had her Oxygen max so I would have to fit the fork or spoon into the hole along he side of the mask. It was a bit tricky to say the least. 

The food really did the trick and she perked up. I was able to get her out again but this time just in the wagon. And since kids were playing in the toy room we had to just wave as we went by. 

The evening was fairly smooth and up eventful. She has been logging quite a lot of time on the iPad, which she doesn't complain much about. And I've learned the hard way that I better charge it at night regardless of the battery level or we'll be in trouble. Up to this point she has just watched shows or movies. I was so encouraged to see her, finally, choose games to play with. 

Today was really a day to recover and maintain. By the end of the day, and when her movie was over, she pushed theiPad away and said, "suggle, mama, bedtime." And then tapped the spot on the bed next to her. How could I refuse?

Day 1

The first 24 hours are different than Day 1. I promise it will make more sense later.

Day 1 was a hard day.

Tuesday morning, August 19, when we got up we had another procedure to prepare for. She would go under general anesthesia and have a portocath placed, a lumbar puncture, to check her spinal fluid for any of the tumor cells, and her first dose (and that's first dose as in first day of treatment, Day 1) of chemo injected into her spine. She also ended up having an echo done at the same time. It was a lot.

One of my favorite parts was when they'd say, , "it's at 10." "No, 12." "No 10." That kind of stuff happens a lot around here.

They wheeled her downstairs and let me go along. The bed they put her onto was skinny so I stood with her and people were shuffling around. Then I notice the nurse anesthetist start putting medicine in Mary's IV. As I always do I asked what it was. It was the drug to put her out. Before I knew it they had her eyes taped and they were incubating her. I wanted to scream, "Wait! I can't be here for this!" I turned around and finally got the attention of our nurse and just said, "I need need to not be here." She quickly ushered me out, not only that but she ushered me out with someone talking to me. That nurse began to explain the portocath procedure and by the time we got into the hallway Karen (a.k.a. Granny, a.k.a. my mother in law) was walking toward us. 

When the nurse went back to her duties Karen set her things down and then demanded that I hug her. And thus began another pressure release. I was so grateful to have her with me to talk and make plans. 

When Mary was done and they came they got me as they wheeled her to recovery. And the the fun really began. She was extremely agitated. She even kept telling Granny to go! Not wanting to upset her more, and having lots of things to do (she has been me while I'm away) she left. I had the iPad (don't know what we would do without that thing) so I put on a movie to distract her. She was having a difficult time keeping her oxygen up. And she wanted nothing to do with anyone who would try to put anything near her face. 

They eventually brought us up to her room. She did settle down some but she still needed some oxygen. I began having flashbacks to when she had her tonsils out and she struggled in the same way which led to pneumonia. That scared me more than anything, she has nothing to fight off the pneumonia with.  The whole afternoon kind of went along the same way. Watching her closely, adjusting her oxygen mask when needed.

Meanwhile I had another visit with Dr. T. She handed me a pamphlet that said ALL. We finally (sure it's been about 48 hours at this point but it felt so much longer) had a diffinative diagnosis. Acute lymphoblastic leukemia. If a leukemia could be good this would be it. It has a good prognosis and it's much easier to treat than other leukemias. What a tender mercy. Then she handed me a calendar. On it is mapped out almost every medication she will get for the next month. I know it sounds strange but that calendar makes me so happy. I can't wait to get home and laminate it. There was a lot more information overload, but she promised me that she would repeat everything she was telling me over and over until I got it. 

That evening David brought the kids up. I was so excited to see them. I think William grew in the two days since I saw him last. We chatted and ate and Mary either dosed or watched movies. They didn't stay long and she did give them hugs when they left. Before they left, I wanted to talk with them about what was going on. Just the night before, on the phone, Ruth had asked, "How's Mary? Have they figured out what's wrong" it nearly broke my heart. For this first visit I kept things simple and straightforward and matter-of-fact. And that's just how they took it. I was so proud of them both.

After they left Mary continued down hill. Struggling more and more to keep her oxygen where it should be. She was so tired and and, in a word, ticked with being constantly messed with. She has meds she has to take by mouth twice a day. Taking pills isn't as big a deal as it may seem. Prior to this she had been on iron for about two months. She was at the point where I could hand her the pill and she would put it in her mouth and swallow. Being in the hospital though has made her a bit less compliant.

That night as I was trying to give her the first pill, holding her down, she went wild. Screaming, fighting, kicking and even digging nails in my arm. And then she pulled the tube going into her port apart which added blood to the battle. The nurse worked quickly and help came fast to get things back together. 

From that point we've crushed her pills and put them in a few bites of applesauce. I rotate bites with the "plain" applesauce and the "med flavored" so while annoyed she still takes them. 

The night continued as it started, crazy. Her temperature went up, combined with the oxygen issues. A chest X-Ray was ordered, plus blood cultures and blood work, most of which could be taken from her port. Again I was having flashbacks to her week with pneumonia. It was intense, it was stressful and it was down right scary. They finally gave her LASIK, since she had very poor output. In the end that's what did the trick. 

Here's what I think happened. There was the perfect storm of the general anesthesia, her sleep apnea, her low tone, plus all the stuff they're pumping in her.

By around 11:30 she finally settled. They got a different type of oxygen mask which kept her consistently where she needed to be. She slept pretty much the rest of the night. Of course I was so wired it took me a long time to be settled and calm.

I kept thinking of her fighting me over those meds. I tried to be patient but all I kept thinking was how I need her to scream and kick and dig her nails in. I need her to fight. I need her to fight hard.

Although it would be nice if she wouldn't fight me.

The First 24 Hours

Fortunately, they let me drive us to the new hospital.  And once we got there they were ready for us. Dr. T had asked that they call her when we got there, and she came not long after we were settled in. The evening was a bit of a whirlwind. Once we were settled Dr. T, the hospitalist, and a couple of nurses were in our room as I answered question after question of her history. And then Dr. T layed it all out. It was like hitting the ground running. She felt certain that we were dealing with one of four things; ALL (easiest to treat, and could be done here), AML (a bit more complicated, and most likely we would have to go somewhere else), aplastic anemia (she doubted this was it, since she didn't present like one) or ITP (idiopathic thrombocytopenia purpura, basically nothing, she was convinced this wasn't it and if it was then she should quit her job). The only way to know is to do a bone marrow biopsy and that she would schedule one for first thing in the morning. In the meantime she would get a transfusion of platelets, which they did recheck and they were at 13. Also her WBCs, white blood cells, were 10. The bone marrow results could take until Tuesday to get back but she would look at the slides and be able to give us a preliminary result. 
She shared some many more things it was information overload. After she left our nurse and the charge nurse went into support mode, it was amazing. They brought me a notebook so I could write any and everything down, they told me that at night they were there to unload on. During the day so much information would be thrown at us that they were there as a support. It was overwhelming, to say the least.
Meanwhile Mary had to not only have another blood draw but a new IV in. It was rough for us but she was rewarded with two cups of chocolate ice cream, two cups of jello, a popsicle and a few graham crackers. All of which she felt pretty good about.
We both slept pretty well, all things considered. And bright and early someone was there to draw blood. Her platelets were up to 75 and her WBCs were up to 20. Doubling in such a short amount of time, with her other symptoms was, for me, confirmation that we were dealing with a leukemia.

Not long after that we headed down the hall to the PICU, where the bone marrow biopsy would be taking place. I stayed with her for a little while but I knew I couldn't stay for the procedure. Technically I could have but I knew I didn't want to. I know my limits, and that far exceeded them. I walked back to our room, and I cried. Well, I call it having a pressure release. For the first time it all kind of hit me. And then I cried some more because I couldn't find any tissues in her room. The nurse came in, saw my state and ran and got me two full boxes. I took some deep breaths and started writing anything I could think of. 

I knew the procedure would be short, and it was. They brought me back while she was still asleep. And asleep she stayed for some time. I know she was tired and I think she was just taking advantage of the nap time. After watching her for a while they brought her back to her room where she slowly woke up. It wasn't long before she was drinking and interacting.

We had our first visitor, David, which was happiness all around. While he was there we took her on a walk around the hall, which she sort of tolerated. 

By that point we had also visited with the doctor a couple of times. By looking at the slides she could tell that it was either ALL or AML but we would have to wait until the final results came the next day. However how she talked, sharing treatment plans and such, I could tell she felt it was ALL.

The rest of the evening and night went smoothly. She was eating and drinking well. And then had a surge of energy around 11 so we did some hall walking. Which I know is good, but it was ready for bed!

That about covers everything up to Day 1.

Are you still with me?

Pre-The First 24 Hours

Since I'm starting this a few days in, and I really want to start at the beginning, I'm back tracking.
The first 24 hours starts Sunday, August 17, eveningish.
Two days before the first 24 hours was Little Miss's first day of Kindergarten. I was so nervous for her, but she rocked it out like nobodies business. When she came home she kept saying "class!" I think the most exciting thing for her was being surrounded by kids, being the social butterfly she is. That evening I noticed on her stomach and legs petechia. Small, even tiny, red flat spots. Given my educational background, and overreacting nature, I knew that they could be a sign of something really bad. But they could also mean nothing. I  convinced myself, sort of, of the latter.
A few hours before the first 24 hours she was so off. Sunday morning she was crying and upset and as the morning went on I knew that something wasn't right. Then she fell asleep on my bed, then I she felt warm. I took her temperature and it was 101.2. Then I panicked. David wasn't home so I called him, mainly so he could tell me what I already knew: I needed to take her to the ER.
While a good 85% of that visit involved waiting, here's what happened during with the other 15%. They drew her blood, ran a few test. The results came back with a platelet count of 8,000, or 8 (normal is 150-400), she was also slightly anemic, and she had increased lymphocytes. But all anyone was focusing on was her platelet count. While it was shockingly low, it confirmed my feelings and explained the petechia. The doctor called few different doctors, which would then "punt" (his words not mine) off to someone else. The one who finally kept us, Dr. T., was at the hospital an hour away (better than the one two hours away") and she wanted us there that night.