T-1...Big day tomorrow...

Okay, so tomorrow is the big day...BMT...

I would be a big fat liar if I said I wasn't more than a little nervous. Tomorrow is a turning point in all of our lives, a day that could make or break Sarah's entire life. Literally. There is a lot of pressure in that. And there is a lot of pressure in knowing that tomorrow the entire fate of my precious baby girl rests in the hands of strangers, and while I know and I trust that they will do everything they possibly can for her, I know that tomorrow is going to be especially difficult as a mother, knowing that this is just going to go the way it's going to go, and there's not a damn thing I can do about any of it. I can't fix this. I can't make this go away. I can only pray, and trust that things will get better, that tomorrow and the days that follow for the next year or so until we are out of the woods are the very hefty price that we all have to pay for Sarah's future. I will pay it. She will pay it. There is no other way.

There is an added pressure and simultaneous release in knowing that she is in God's hands as well. There is  nothing I can do, but by the same token, there is nothing for me to do but what I have always done. Be her mom. That is all that is required of me right now.

After the past two nights of no sleep and waking up every hour to my baby screaming in pain, the doctors and nurses have decided to just put Sarah on a Fentinyl drip, which means she has a low dose of pain medication running through her lines at all times. Now, those that know me, know that pain meds where Sarah is concerned are a last resort for me. I don't want to create dependencies in her later, or foster the idea that you just pop a pill every time you break a nail. Not that we don't ever use them, but they are a last resort, and 50% at least of Sarah's reactions to things is pure Drama Queen. But my baby has been in pain for two days straight, and even the pain meds weren't helping. Something had to be done. There is a slight risk that she will go through withdrawal later and that the very dependencies I was trying to avoid might surface later, but these drugs exist for a reason, and there is no other way at the moment. A very low dose has taken her pain and given me back my smiling, happy baby girl. That's all I care about at the moment.

All I can do is try to keep the negative thoughts at bay and focus on the positive. Tomorrow, we have friends and family coming to support us. Tomorrow, the Child Life department has set up a sort of "re-birthday celebration" which should make Sarah very happy. Tomorrow is, literally, the first day of the rest of our lives. May as well look forward to it.

Miss Boots is yelling at me, anxious to take her bath and play with the amazingly awesome new bath toys that Ama has so generously provided to entice her into the tub, since Miss Boots has had an aversion to tub-bathing in the hospital, but needs to take a daily oil-infused tub bath during her post-transplant convalescence. The moment is calling. Guess I'd better hop-to.

T-2

Okay, so last night was the stuff of nightmares. It was in some ways even worse than the bloodbath fiasco a few nights ago. The new chemo drug they are giving her, Cyclosporine, is making her violently ill, and she has been literally throwing up all night. Then early this morning, she woke up screaming that her bones hurt, and the nurse told me that bone pain is common at this stage because the blood cells are produced in the middle of the bones, so the chemo is killing them off and the center of her bones is a battle ground right now. They added some Beny-Reglan, a combination of Benadryl and Reglan to her drug cocktail, which helps with the nausea by relaxing her and keeping her GI tract moving so that there is nothing in her stomach and therefore the urge to vomit is reduced. They added Fentanyl for the pain, and heat packs, but nothing seems to really be helping and I am at a loss for what to do. All I can do is keep her comfortable, or at least as comfortable as I can, but Miss Boots is not a "brave front" kinda girl, so despite our best efforts, our room is filled with the sounds of her screams every few minutes.

Two more days, I keep telling myself, two more days, and this is almost over. As though God knew we needed it, He sent in our favorite nurse, Kara, and her presence seemed to calm both of us, at least for a moment. I'm not sure what it is, but she has a presence that is reassuring, and she is an amazing nurse. Perhaps it's the fact that she loves Sarah as much as I do that is so comforting to me.

All we can do is pray, and wait. Sarah is sitting on her bed, surrounded by toys, and she has no desire to play. I think that is the most heart-breaking part, that this is not my girl, this is not my Sarah. Sarah plays no matter how she feels, so if she is just lying there, I know her pain and suffering is so much worse than what she lets on.

I am off to go make her some Chamomile tea and pray that it settles her stomach at least a little. It always worked when she was a baby, and I am grateful that my use of it in her infancy has made her acquire a taste for it. Perhaps it can help her now. Then I am going to string the countless Beads of Courage that she has racked up since we got here a week ago, and then I am going to attempt to distract her any way I can. Perhaps in doing so I can distract myself from the fact that I feel so effing useless.

EEEEE....from March 8, 2012

Okay, so last night I managed to get a little more sleep than the last few nights, but only a little...they have Sarah on TPN (IV nutrition) because she's not eating very much, and since she hasn't been on it since the first round of chemo back in December, I forgot how many air bubbles it creates because both the nutrients and the lipids are thick, so they create air pockets as they filter through, which means that I have to stop the machine from beeping every thirty seconds...I know I am given to hyperbole, but that is NOT an exaggeration! Actually, I think 30 seconds may very well be an exaggeration, because it's probably way less than that.

Still, after a lot of fighting and putting my foot down, Miss Boots went down crying at about 10:30 or so, and my exhausted body finally let me fall asleep by about midnight. It would have been a restful night had it not been for the incessant beeping. So today, I am encouraging Miss Boots to eat as much as I possibly can, because we can't go home if she's on TPN, and the transplant is now in a little over a week. I cannot believe how fast this week has flown by. Today, in just about an hour, we have the meeting with the doctor to discuss the transplant, and all of the details about the aftermath of said transplant. Needless to say, I am nervous. Nothing is going to happen, per se, except the exchange of information that is so vital to our situation at the moment. I will let you know how it goes.

T-3...

Okay, so today marks three days until transplant...I'm not sure how to feel. A part of me says it will be sort of anti-climactic, just a bag of blood cells being pushed through her IV tube just like any of the other blood transfusions she's had over the years. Another part of me says this is more than likely the most important day in her entire life, because it means she has a shot at having a life at all. They make a big deal out of it here, a sort of "Re-birthday" with a poster and presents just like when she celebrated her fourth birthday here just a few short months ago. The time has gone by in a blur, and I am amazed at how well she has sailed through all of it. I am not so sure I can say the same for myself. I am holding together by a quickly fraying thread, and while my days are spent being anything and everything my daughter needs, my nights are spent trying to decompress and worrying over all the things that could go wrong. I am scared. I feel helpless and often times alone, and there is nothing I can do about it. The fear is setting in, and I am not so good at keeping it at bay, especially when she is feeling terrible. All we can do is wait.

T minus 6, Worst...Mom...Ever...

A blog that I only half-finished from Friday, posting now...

Okay, so today was shaping up to be a good day...emphasis on the word "was"...

She was good all the way up until I'm getting ready to put her to bed, and then she starts up with her usual antics. She wants a snack. She has to pee. She wants to skip her bath. She's scared of the dark, when there is a huge ass night light staring her in the face. She can't sleep without a pile of about four thousand dolls surrounding her. Then, when this child has worn thin my nearly infinite patience, I cut her off. No more antics, just go to sleep. Then the real fun begins. Then the tantrums start. Every. Single. Night.

Tonight started out just like usual, except for the part where she pulled her lines out twice within an hour, and the nurse had to change out all of her tubing, and I had bathe her again to wash off all of the blood. Then, once I had her clean and ready for bed, she started throwing a fit because I refused to let her watch another movie, and I noticed blood starting to seep through her pajamas, in the center of her chest, where her broviac tubes are. Now, the broviac lumens hang out of her chest, so seeing that blood made me really nervous. Thank God that when I checked, I discovered that it was coming from her port needle tube, which had cracked. So another bloody mess to clean, another bath, and her port needed to be reaccessed, but there was no time for LMX cream (this numbs the pain but takes half an hour to an hour to take effect) because it takes forever and the port needed to be reaccessed right away. So the nurse gathered what she needed, including witnesses, because they don't usually deal with ports back here in OICU.

Now, the porta-cath is a catheter that lies underneath her skin and goes directly to her heart. It is accessed with a needle that works sort of like a pincushion or a dart board.



Usually, the LMX cream would numb the site so that she would feel minimal pain, which I am ever so grateful for, because she was allergic to the EMLA cream they used before that, and so they just kind of had to go in cold turkey and she has spent the last two and a half years just getting a needle poked into her skin. But like I said, this time, there was no time because they couldn't flush her catheter because it had a hole in it, so it had to be reaccessed with a new needle right away. So they, went old school on Sarah, took out the old needle, used the cold spray that she HATES, which also has a numbing effect but stings in the process, and the new needle went in. Now Sarah's porta-cath is tiny, about the size of a small pill, and it wiggles from two and a half years of being poked, so if you don't get it just right, it won't draw, meaning you can't get anything out or put anything in, so guess what happened? Mind you, the nurse is relatively new, works OICU so she doesn't do a lot of porta-caths, and was already frazzled from the previous events of the evening, and there is another nurse and another resident watching her. She puts the needle in, and it won't draw. So she takes it back out, and puts it back in. Still won't draw. They get another needle, switch nurses (the other nurse usually works the main oncology floor where they see ports all the time) and this time they get it, but my poor baby has been poked three times and is none too happy that she had to be held down this whole time.

Then another tantrum ensues because she still doesn't want to go to bed, even though she's even more exhausted than she was before from all the crying she's been doing. This was the mother of all fits. She's not only crying, she's screaming, she's thrashing, she's hitting herself, the bed, and anyone who gets near her, she's throwing things. Finally, my seemingly infinite patience has worn down, and I called her father for reinforcements. I was seriously ready to take his car the minute her got here, and go home for a much needed mental break. I couldn't take it anymore. She had been screaming at me non-stop, and everything was a fight. I called him, told him he needed to get here NOW, and she starts freaking out because I called him, so she bit me. Yeah.

When I hung up the phone, I turned around and started scrubbing the blood out of two pairs of pajamas. She asked me where I was going. I told her I needed a break, that I was going home. She asked when I was coming back, I told her I didn't know.  She starts crying, says she's going to miss me. I soften a little, but I am too angry to answer her. She starts crying ans says that she doesn't want me to leave, and I tell her that I don't want to leave but that I need a break, that this entire process relies on her cooperation, and that if she won't listen to me, then I need to call in someone she will listen to. She whines and bluntly points out that she doesn't listen to Daddy, either. Had I been less angry and frustrated, I probably would have laughed. Instead, I stayed quiet. She quietly asked if I would be back Sunday. I told her that I would, and she said, "Okay. Goodbye, Momma." Insert heartbreak here.

I rinsed out the pajamas, and picked her up, because she had started crying and was reaching for me. I held her tight, and she started sobbing, and telling me she didn't want me to leave. I told her that I would stay if she would promise to be a good girl, and she told me I was the best Momma in the whole world. :'( I told her that it doesn't feel like it sometimes, especially when she acts this way, because if I was a good Momma then she wouldn't, and she said that I was, that she didn't know why she was acting this way.

Of course, by the time he gets here, she was out, but I was still so grateful that he came because I was still a mess. Just seeing him made me feel instantly better and worse at the same time. I felt so bad for making her cry, for making her feel badly, and at the same time, what kind of mother would I be if I didn't nip this behavior in the bud as it happens? Then, what I told her was the truth. I honestly feel that if I was a better mother she wouldn't behave this way. While my husband is consoling me, making me laugh, offering me food, rubbing my back, the nurse comes back in to hang her chemo, and she tells me that I did an amazing job, and that it could just be a reaction to the hydrocortisone, which is a steroid, so it can cause the 'Roid Rage, but because she was only getting a small dose it was just enough to blur the line between 'Roid Rage and Spoiled Brat. I felt relieved and even worse at the same time. At least now we had a cause for her erratic behavior, and I could take the old priest and the young priest off my speed dial. Then I started thinking about how hard I had been on her, when at least half of it hadn't been her fault at all.

But "Knowing is Half the Battle" as GI Joe used to say, and the next night was better because I could deal with her the same way I always do when she's on steroids. She still fought going down, but I picked my battles with her and it wasn't too bad.

So, what have I learned? I am not Super Woman. It's okay to ask for help. Sometimes, it's downright necessary. I learned that my daughter's love for me is as boundless as my love for her. That we can love each other through anything, even when we act crazy. Most importantly, I have learned that I am way harder on myself than other people seem to be. I even had a nurse the next night compliment me on how I had handled the situation, saying that she would have gone crazy way before I did. Maybe the lesson here is not only to go easier on my daughter, but on myself as well.

T-4...getting close....

Okay, so today was day -4, which means four more days until Transplant...I'm getting nervous, and Miss Boots isn't helping with all her questions about God and Heaven all of a sudden. But now that they stopped giving her hydrocortisone, she was much easier to deal with today. She still received her chemo, and she had a mild allergic reaction, but nothing a quick dose of Benadryl couldn't fix. Chemo/Cancer/Complication-wise,  it was a relatively uneventful day. We played Lalaloopsies, we watched the rain. My dad came to see her and say a blessing over her, and we feasted over the candy picnic he brought with him (note to self: Chocolate-covered cashews are the BEST THING EVER!!!). He said a blessing over her, and I think it brought us both peace. We watched the rain some more. We snuggled and read a few chapters from Coraline, and  I cannot believe she stays still long enough to listen to a book with minimal pictures for as long as she does. She fell asleep and napped for several hours, and I knocked out with her for awhile, although not nearly as long as I needed. Her favorite night nurse, Kerry, came in for a visit because we haven't seen her in awhile, and Sarah proceeded to show her every toy she brought with her and we told her all about our adventures on our last trip home. Miss Boots watched two movies, had two snacks, read two books, and finally knocked out at 12:30, with no tantrum.  I think those are the two most beautiful words in the English language, and I know me some words.

So, yes, all in all, today was a good day, and I am writing it down because I want to remember it.Really, this should be one for her journal, but it's faster to type, and I am in desperate need of a shower!  When Sarah is past all of this, when she is too big to cuddle and too old to need me anymore, I will remember cuddling her sweet little four year old body next to mine and reading chapters from Coraline while the wind howls and the rain falls in sheets outside our window. When things are bad, I will remember days like this.  I will remember my happy, chirpy little songbird of a daughter and how she asks me to sing her made-up songs that she only just made up in her head, and how she runs a hairbrush across her bald little head and says that when her hair grows back, she is going to have bows everywhere, and how she tells me that I am the best Momma in the whole world, even when I'm angry with her. Here's hoping there are more days like today in the days that lie ahead of us. I feel kind of lame writing a two-paragraph blog, but I think our state of mind in these days leading up to transplant will be important later on, and are worthy of being recorded. Three more days to go...

T minus 6, Best present ever!

Okay, so today seems like it's shaping up to be a better day. Miss Boots went down extremely hard last night because she was over-tired. I finally cut her off at 1:30, and basically let her throw a fit for another half hour until she wore herself out and fell asleep. She would frustrate me to the point where I almost had to leave the room, then hug me and say, "Momma, I'm sorry for all the silly things I do. We'll get through this together. Family forever!" Sigh. What am I going to do with this child?

This morning she woke up around 10 am, not too bad, and she was in a phenomenal mood, even took her liquid meds by mouth without gel caps, and without even being asked! Maybe it had something to do with the conversation I was having with the nurse about how good she used to be about taking her meds without a problem. Whatever the reason, she took them without a fight, and I am grateful.

She is playing and talking and laughing as if the drama of last night is all but forgotten, and I set about clearing the notifications on my phone: 1 missed call, Subfinder. 1 voicemail, Subfinder. 2 text messages, replied. Then I tackled the forty-plus emails that came in overnight, or at least since 2 am when I checked it last. A few were important, some not so much, and among them was an advertisement for Disney Interactive, for the Tangled iPad/iPhone interactive storybook app. Child Life has this on their iPads, and I wondered if they had it as a nook app. So I went to check, and a search for "Tangled" brought up one book that she already has in hard copy and a lot of other books that were questionable at best. There is a LOT of erotica out there, apparently.

So I typed in "Disney" to see what that would bring up, and I came across the best app EVER. At least, for a Small World fan like Miss Boots. It's an actual It's a Small World app that is basically a digital animated storybook that illustrates the entire song, and even plays the song at the end. This entertained her for at least an hour, which anyone who knows Miss Bossy Boots knows that it is nearly impossible to engage her attention for more than five minutes unless you're actively reading to her, in which case, she will stay there all day. Literally, ALL DAY...we've done this before.

An app that illustrates, animates and plays my baby girl's favorite song/ride in the entire universe, and all for only $2.99? DONE. I bought it, and a few others learning apps, but you should have seen her face. Her entire face lit up when it loaded onto the screen, and she threw herself into my arms, exclaiming "Thank you, Momma! This is the best present ever! Thank you for buying it for me!" She then proceeded to watch, and then thanked me several more times. After about an hour she lost some interest, but still wanted it running in the background so that she could hear the song.

For less than $3, I have given my daughter hope, I have given her something to hold on to.I have also given her even more fuel to get that song stuck in my and all of the nursing staff's heads, but it was worth it. She is happy today. She has something to hold on to, something to look forward to.

Today, she met a new doggie, is being read to by an unsuspecting volunteer who has no idea that she is about to stay WAY longer than she expected, Child Life is choosing an awesome prize as we speak to reward her for taking her meds without a fight, and a dear family friend is coming to visit. Today is a good day. The Campath is running, Busulfan later. There are ridiculous amounts of premeds and fluids running through her and I am going through diapers like crazy, but my baby girl is happy to be alive today.

Today is a good day.