I only cry on Tuesdays

And let me tell you what, it is getting pretty pathetic. I have been going to this Bible Study on Tuesday mornings for 3 reasons:
1) God misses me and I miss Him
2) Free childcare with workers who have the patience to deal with Piper
3) Its about the book of Job and suffering and I have heard through the grapevine that even Christians may face suffering. (gasp.)

And I love the study and the ladies and the lovely breakfast table and not changing diapers and having adult conversations and all that jazz. I really do.

BUT. BUT. BUT.

I spend the better part of the hour and a half staring at the rafters, checking out the breakfast table, avoiding eye contact and gnawing the heck out of my tongue. Why? Because otherwise I cry. So far I have been able to be all ladylike and dainty about the tears that slip out but today I toed the line of falling on my face sobbing like a child. I believe I have mentioned before my aversion to tears and all things emotional. (gasp. again.)

Oh the tears.

Oh the snot.

Oh the stuttering.

Oh the horror of being caught being human.

No harm done. Except to my pride and my mascara.

And the ladies in my small group all watch helplessly and I want to be all, "This is sort of my Tuesday gig" or "I penciled this in on the schedule so don't you fret about it" Poor, poor ladies didn't know what they were getting into having me join them. I hope I don't get kicked out for excessive sobbing.

So THAT was fun.

And so if you were to ask me how Piper's eating was going, or how my marriage is suffering or how much I am missing Linley while she is in school or how many hours of sleep a night I am getting...well, pay attention to my jaw line. Its probably working on my tongue and the tears they may be a-coming. But its okay so long as its a Tuesday. Now, on Wednesday I put my big girl panties on and deal with things a little better. So schedule your questions accordingly, my dear friends.

No tube.

I have logged on twice since Tuesday but seriously, after a clinic appointment there is so much information flooding my brain that I shelved it all. And then there was Thanksgiving, and my brother and his wife and little girl visiting and then life and then next thing I know I am getting calls and emails wondering about Piper and her possible NG tube.

Sooo...as of right now its a no. Praise God. Sort of. Piper finally gained a third of a lb. Is that good? Well, her primary oncologist Dr. Bergsagel was into see us and he feels like as long as she is not losing weight, she will be fine as long as we continue doing what we are doing. Apparently it often takes 2-3 months on Maintenance before children begin feeling better. So hopefully food therapy will begin and be helpful and Piper will begin to trend upwards with her weight. While I am thrilled to avoid an NG tube I am seriously over the whole syringing formula into her little body. And that formula is EXPENSIVE. But, she definitely has more energy and is happier getting all those calories. So onward and upward we go.

What else...

...could one very fancy five year old possibly wear for an after dinner walk with their daddy? My Linley is always dressing up but apparently she is dressing up and out of some of her old dress up clothes. And don't forget the cowboy boots, they are Linleys favorites and like her mommy she chooses to wear those babies out!



On a less fanciful note, tomorrow is a big day for Piper. Apparently the Babies Cant Wait program here in Ga is a little lax about the whole babies waiting thing and in the meantime, we have snagged an appointment with the speech therapist at the hospital. That will be an hour and a half appointment starting at 8:40 tomorrow and I have no earthly idea what they will be doing. But I have high hopes for it being very beneficial for Piper over the coming weeks and months. After that appointment, we go up 2 floors and check in at the clinic for her monthly chemo and port flush. I am pretty sure she will be getting an IVIG transfusion as well, which will run about 3 hours plus being pre-medicated beforehand because she reacted badly to it back in August. And we will also be weighing Piper. I hate weighing Piper. I will say that over the last 2 weeks she has consistently been getting 800+ calories in her each day in any way possible. That HAS to count for something. My prayer is that she will have gained enough that the Powers That Be will allow us to hold off on the NG tube. And as always we pray that Pipers numbers are exactly where they are supposed to be and remission will continue.

I am worn out tonight and am thrilled that Chad is out of school for the week and can join me tomorrow. Not quite as thrilled about Piper beginning her steroid week but superbly thrilled about kicking Leukemia once and for all.

disconnecting

I have been feeling the need lately to disconnect, even to disengage. Life for us is busy. Sometimes stressful. Often beautiful. Randomly it's not. But no matter what each day holds for the four of us, it is undeniably going very quickly.

I am the mother of two amazing little fancy faces. I find total and utter completion in this career path of raising, rearing and loving them. I love the day to day exhaustion that being a mommy brings. I love being a homemaker and to feminists be damned, it is fulfilling. I don't get bored or feel like my talents are being wasted. I don't miss dressing up or feel the need to drive a nice car. I am simply and unequivocally satisfied with mothering two little girls and wifing one amazing man. It is my destiny and I am blessed by God to be able to strive to do it with all that is within me.

All of that is why I am disconnecting. I resigned from facebook, I check my email maybe once a day, I am screening my phone calls and I am settling in. Not for forever...perhaps just a season. Instead I am being beaten by a 5 year old at Monopoly Jr, I am wandering around the woods with a 1 year old, I am reading books that guide me, stealing moments with my spouse, spending time with God and resting my soul. And it is goooood.

I noticed how quickly life is passing me when I went in to tuck Linley in last week and her legs were sooo long. Her hair is becoming golden instead of towheaded and her cheeks are no longer those of a small chubby little girl. I turned to kiss on Piper and noticed her hair is truly coming in, her eyelashes are beginning to rival her sisters and she no longer sleeps only on her tummy. In ten years, I am going to wish that my 15 year old were nearly as chatty as she was at five or that my eleven year old wanted to be as physically close to me as she did today. Prayerfully, what I do today will impact them then and I will not feel an agonizing pain at the thought of them growing up if I deliberately enjoy them today. And if it means that I am disconnected or even disengaged in order to prioritize; then that for me, for at least this season, is the most important thing I can do.

Silent Joy

Many, many years ago, back when I had much free time, I spend some time as a volunteer for children with autism. In my time working with these kids, I met many moms and dads and most of them would say that they felt blessed to have and hold their children but that it was a struggle to care for them and never really get any emotional response. On a much, much, much smaller scale this is how I feel with Piper most days.

I think it is a coping mechanism and I was always cautious to verbalize it but there is both serious bonding taking place between me and Piper and also a wall built up. For 14 months I have been her primary caretaker. Its been me who takes her to most appointments, gives her most meds, attempts to feed her most meals and tries to keep her contented and happy most days. You know, the normal things a mommy does. But obviously, Piper is different. She doesnt bond the way other children do. She often wants me but not to love on but to simply be held by. Her way of enteracting with other people is awkward and her relationship with Linley is sparce. I am not happy with this but have always chalked it up to being a result of undergoing so very many horrible experiances and treatments. She simply has no choice and I simply had to chose, 14 months ago, to hold myself aloof. That may sound heartless but I knew there was no way I would make it through 2+ years of treatment with her, becoming an emotional mess everytime she fell apart. My job as her mommy became clinical at times and I think that although there is obviously a deep bond between us, it has been similar to caring for children with autism. All her needs are met but there is little emotional human response to me on a commited basis. And this my friends is one of the most difficult parts.

BUT. In the last few days Piper is opening up. While always a sweet girl when feeling well, she is giggly and cheerful. She is playing alone, finding me happily, playing peek-a-boo, and responding to my little songs and games. I cannot tell you what a joy she is growing into. Tonight, as we do every Monday night, myself and Linley curl up on the couch and watch Dancing with the Stars. Lately, Piper has been joining us as I attempt to get more formula in her before she fads off into nighty-night land. But tonight, when Piper saw me coming to the couch she sat up from the corner she was sipping her sippy cup in and deliberatly curled into my side. She placed her cheek on my arm and reached over and patted me. On my other side was Linley with her feet propped up on my lap and I could not contain my heart from weeping out my eyes. I know this may be so normal for you, but for us this was the beginning of a relationship between a mommy and her 2 beautiful, semi-healthy daughters and I cried silently with joy.

11/14/10

I think my concept of a "good" day has been warped permanently. Piper is not such an independent child. Linley was and is. Piper on the other hand is perfectly contented to sit on my hip all day long and growl. (yes, growl...she kind of has this thing with growling) We are still chugging along with the eating and she went all day yesterday eating about 14 oz until she threw up when I gave her her late night chemo...but I truly think it was a gag reflex, not a reaction to the amount of formula we are attempting to have her consume. Today has been even better with her drinking 4oz at breakfast, lunch and dinner and snacking a bit in between. And keeping it all down. Even the diarrhea has lessened. Minor success but I will take it.

And she is pretty happy. Odd though it may be, she has been the happiest refuge-looking child out there. Today she was contented to play on her own a few times and even came crawling to find me versus screaming bloody murder when I left her alone. She even pushed her stroller around a bit. Major success there. And it was sooo nice. It made for a very "good" day for us. I wasn't counting down the hours until bedtime, Linley wasn't begging for my vague attention, I even cooked a real meal, and everyone enjoyed each other. I loved it.

I am hoping that Piper will continue to trend upward as far as wanting to consume both formula and food. She has only had 4 days of this new med called Megace but I am uncertain as to how long it takes to really get her appetite moving...although I do see an improvement. As of right now she is not due to be seen at the clinic until next Monday and will be weighted there. Hopefully she will have gained enough that the Powers That Be will feel like this is working, otherwise we are back to the blasted NG tube talk.

Today at my parents church they prayed specifically for Piper and the eating issues we are having. Someone came up to my mom and told her that they would be fasting for Piper for 3 days...I began to sob. I am so tired. I am so overwhelmed. But it is these amazing people who are here to hold my arms up, like Aaron did for Moses in the battle of Amalekits. (powerful story in Exodus 17) That person coupled with so many others who have prayed, pitched in and encouraged us are amazing. Thank you.

11/12/10

Much better day. I made myself stop worrying about the amount of calories she was taking in and focused on encouraging her when she took the formula by sippy cup, versus syringe. And no throwing up. She totaled 15 oz all day and while that is below the goal, it ALL stayed down. There were no tears or pushing her to drink, rather alot of cuddling and singing. Success. She also snacked a little on gouda cheese, rice at the mexican restaurant, salty soy beans, and a little banana nut bread with her sister while Mommy and Daddy shopped for a new desk for Daddy. I cannot tell you what a relief this was.

And now, at 2am I have a house to pick up. My lovely aunt is coming tomorrow to help me out around the house but I am attempting to get a head start...good luck with that, huh.

So its been a good day. Continue to pray that Piper's appetite increases and she begins to consume as much formula as her little (sweet, silly, special) heart so desires.

11/11/10

I dont know what to write. I am on the way out the door for a funeral tomorrow in WVa for my friend Kellys husband. My heart is broken for her. My heart is tired for Piper. Total of 15oz and then a royal bedtime puke...can she possibly be getting any nutrients?

I just dont know. I do know that I love my girls. And Kelly loves her husband and I dont ever want to take these precious moments for granted. Pure air to breathe is a miracle. Life is a blessing...hug your babies and tell your spouse you love them.

Not going to happen

What a joke. 24 oz of formula in this little girl? Its not going to happen. I struggled to get 14 in her ALL DAY only to have her throw up at 6pm? I'm not sure if I am up for this. I did notice the bathtub is a hot mess when I put Piper in to hose her off after her own formula shower so that's on the list to do before bed.

I keep thinking "if I just had a way to get it in her tummy without a syringe we would be OK"...uh, that's an NG tube Susanna. Oh well, we get the megace tomorrow and I am hoping that will help hugely. As of today I am less "tentatively hopeful" and more tentatively breaking down. (After cleaning the bathroom of course.) So if you are the praying sort, and Lord almighty why would anyone not be, start that praying. This is a doozy of an experience.

Tentatively Hopeful.

I am so very tired and my house is a wreck so this is going to be a very simple, not so witty update. No NG tube at this time. We now have a prescription for Megace, which is a man made version of hormones in the thyroid that stimulate hunger and subsequently weight gain. Dr. Lewis seemed pretty certain that we will see an increase in her appetite and has pulled Piper from whole milk in favor of a much more condensed pediasure style milk. This stuff is heavy duty as it is 375 calories per 8oz versus the 160 calories per 8oz in whole milk. We are also to continue adding Duocal to whatever she will place in that sweet little mouth of hers. (an additional 30 calories per 4 oz) The goal is her consuming and keeping in 900-1000 calories per day. So truly she could drink 3 of these cans and nibble here and there and be above the parameters of caloric intake.

Unfortunately for us, Piper simply has little to no appetite so its not only a matter of getting fatty foods in her little body but also just plain getting ANYTHING in her little body. It took me over an hour tonight to get 4 oz of this formula into her and the majority of it was done with a 5ml syringe. This could be a very long battle but hopefully as her appetite responds to the Megace she will drink the stuff voluntarily. Everyone we talk to tells us that Piper will eat on her own but frankly, she wont. It has been 4 months and she is down to 13lbs and some change. If I have to syringe this stuff into her, I will. I cannot help but think that anything will be better than an NG tube. Or at least anything is worth trying before submitting to an NG tube. Piper goes back to the clinic in two weeks and will be weighed then so we will see how this new plan pans out.

I am hopeful. An NG tube is not the end of the world but I feel very strongly, and thankfully the GI Dr does also, that there are other options to try before that step. We will see. As of tonight I am literally pushing 4 oz of this stuff into Piper every 4 hours and hoping that she tolerates it well.

I am pretty thankful for the simplicity of this little 730 sq ft apartment tonight as I attempt to get it in order before crashing...the cleaning can wait until tomorrow. Heaven only knows that I will be hanging close to the house with a syringe in my hand...no reason why I cannot clean a toilet in between feeding ounces. :)

"you will keep in perfect peace those whose minds are steadfast, because they trust in you" I was spending some time this morning chatting with God and this verse came to mind. It is what I desire. I have chosen once again to turn my eyes to the Lord. I trust Him. He has brought us so far and He has blessed us. This is why I am chosing to have that faith because this girl needs the peace that inevitably comes along with it.

Clinic Visit 11/8

For some reason I was thinking the ultrasound was given to check out her ability to consume food but apparently it was done to chck out her kidneys and bladder in light of her UTI last month. It went well enough. She hates to be held down, but the tech was a great combination of firm and patient. And the results are normal. Her kidneys are small for her age but normal for her size with no masses or damage to be found. Her bladder was perfect as well.

After that we went out for lunch then back to the hospital for her weight check at the clinic. And that wasn't so grand. Piper has only gained .3 oz in two weeks. Not so great. Nurse Amy was able to get us in to see the GI doctor tomorrow at 1:00 so we are back in Atlanta once again. She has all but decided that an NG tube is the next step. I am overwhelmed at the thought of beginning new treatments when life was supposed to be becoming a little more simple. Mostly I am at a loss. I cannot make her eat and I cannot make her gain weight. I have a list of skeptical questions for the Dr tomorrow and a fragile hope that this may be the answer to the Case of the Incredible Shrinking Girl.

Clinic visit tomorrow

Because of Pipers amazing ability to lose 3 lbs in 3 months, the oncologist are becoming concerned. Now. Not at each clinic visit we go to every single week for the last 14 months. Just now. Believe me when I say these doctors are the best out there...at curing Cancer. The rest of the whole growing and thriving bit seems to be off the radar until it becomes a big 'ole problem. You know, like losing 3 lbs in 3 months. And so...


Tomorrow Piper and I and my sister are visiting Scottish Rite to have an ultrasound done and then a follow up weight check across the street in clinic. ALL of Piper's chemo medications have side effects. Many of them are partially protected by pre-medicating, but because she has had such an intense and long treatment so far, the possibility of there being damage is high. Thankfully she is no longer throwing up or having diarrhea so that is a blessing. A blessing to her, to me, to the laundromat downstairs, to her poor bedsheets and to the little pink doggy she carries around which inevitably got the worst of each episode.

So pray for us tomorrow if you think of it. She is still not scheduled for a chemo visit for another 2 weeks so this should be a simple visit and the ultrasound should be routine. Hopefully if there is a reason beyond what we are already suspecting then it can be easily remedied. And prayerfully, every clinic visit from here on out will continue to show her body producing healthy cells. Everything else we can deal with.

"Hey, it's okay"

to be one of the first to come to mind when a friend needs to borrow some white wine for a recipe.

to not vote...not because I didnt want to but because I still cannot find my voter registration card.

to plan to drop the politeness next time the upstairs neighbor asks me frantically and rudely where Piper is...I am going to calmly tell her that Piper is inside playing with knives.

to make eggs for dinner. A lot.

to be okay with my bank being bought out but not okay with singing "oh, oh, oh a Wells Fargo wagon is a-coming down the street, oh please let it be for me..." from The Music Man every time I want to take out $20.


to find Rocky Road ice cream a lacking substitute for the Heavenly Hash ice cream I loved as a child.


to answer "No" when the librarian asks you if you want a "intriguing and exciting historical novel"...I want mindless. A mindless, stupid, chick lit with alot of laughing.

Halloween 2010

Growing up we never did Halloween. My parents went out of their way to give us a good time at the church parties, or at Pizza Hut or even once I remember renting a video and hiding out in the dark basement ignoring those pesky trick or treaters. It was a little embarrassing but no biggie. My brother though, got in trouble a few years for telling the other neighborhood kids that it was "Satan's birthday"...which made sense to us if Christmas was Jesus' birthday. As a parent now, I am certain that none of those neighborhood mothers were too excited to see the Martin kids and their opinions coming.
All that to say Chad and I DO trick or treat with the girls. While I by no means am an advocate of Satan, demons, horror or any other similar parts of Halloween, I am a huge advocate of dressing up, eating candy, taking a walk with my family and creating smiles on my girls faces. It works for us.

And here are those sweet smiling girls (OK, just Linley. Piper doesn't smile and definitely doesn't smile after a 5 day pulse of steroids.) And that is my hottie hubby with his "good" teeth and Piper staring at them. And that may be me glowing from all the silvery hair glitter that I sprayed in a very fancy angel named Linley's hair. And a good time was had by all.