What do you wear to the beach?

I ask because proper beach attire in my house is highly arguable.

Some bundle up in 40 degree weather and growl at the blasted wind while showing absolutely no desire to touch the water or hold a seashell.
Behold, Exhibit A:



Others in the family relish the thought of tingly cold toes and salty hair. They put on a slightly small bathing suit with enthusiasm and dance with abandon while searching for that perfect shell or while waving at dolphins in the distance.
Behold, Exhibit B:




Can you tell which one was born in Florida and which was born in Georgia? :)

Two Things

There are simply only Two Things that are good about steroids.

1) they are killing any hidden remaining leukemia cells in my sweet baby girl


AND...





2) They make for some sweet quiet moments on mommies bed watching movies.

(And by the way, Youtube is weird. We started out watching babies laughing and next thing I know its a kid dancing to Shakira and then what do you know, there is Shakira herself shaking it up. Piper liked it so I hung in there for a minute but Mommy has a limit and apparently my limit is a Colombian pop star singing about her hips.)


So here's to steroid pulses where my daughter has learned to cuddle instead of scream on my hip.

Monthly Clinic Visit 12/15

Piper had her monthly clinic visit today and all is well. Chad had the honor of bringing Piper alone while I juggled Linley and got caught up with present wrapping, endless laundry and housework and working on an pile of to be filed papers. It was lovely...I didn't say a word for 6 hours and frightened myself when I laughed out loud at a Seinfeld re-run. (Elaine cracks me up every time) Like I said, lovely.


And clinic apparently went well. Piper was given steroids before her IVIG transfusion and subsequently did not have any reaction to it and was able to complete it in the normal four hours. Her chemo (vincristine) went without delay and the Nurse Practitioner was pleased with her almost half a pound weight gain. (6.4kilo last month, 6.6 this month) Pipers ANC was higher than they prefer to keep it during treatment. The goal is closer to 2000 or so and she was at 5300 so Nurse Amy upped her weekly methotrexate to 3 pills instead of 2 and a half and upped her 6mp one night a week to see if it keeps her numbers within the more appropriate range. BUT...everything looks beautiful, there are no concerns.

Piper is eating her weight in Ritz crackers. And shredded cheese. She nibbles willingly on pistachios, eggs, and raw baby carrots. I have to admit that I was thrilled to hear that she had gained weight because I dropped one of her 4 daily four oz. formula feedings. She was puking every night and I just felt like it was a futile attempt...the last thing I wanted to do was to create yet another food aversion. She now takes four oz. 3 times a day and is eating much more. So, less calories going in from the formula but none coming back up and less diarrhea.

We had a visit from the Babies Cant Wait team last week. It was pretty much unanimous that Piper more than qualifies for help. Hopefully, she will be beginning weekly therapy in January and I am still attempting to get additional treatment through the hospital where she gets treatment.

Today begins her 5 day pulse of steroids. Last month was pretty easy but we have had some months that were horrid. I never know what to expect but thankfully we were able to bump up her monthly visit to today instead of next week in order to have her off steroids and back to her sometimes fussy/always cuddly self for Christmas.

So there you go. I am sure I will remember something else but as for right now I am going to go crawl into my clean Apple Mango Tango smelling sheets and mentally celebrate that tomorrow is Linleys last morning to have to get up before the sun for 2 glorious weeks.

I am doing my part...

...to stimulate the economy. I feel for those who fear for their jobs but Praise God, if you work for Gain, you are secure. Children like my Piper who puke or my Linley who loves a good old fashioned multiple daily wardrobe change or my husband who likes clean socks, well, we are doing our part to keep you guys in business.

Enjoy the Christmas season with your newly secured, newly stimulated paycheck Gain and friends. I love you and I love the Apple Mango Tango scent and seriously, its makes the chore that is washing clothes so much more enjoyable. Not putting the laundry away though, that part still totally stinks. (figuratively not literally)

Always fun to be me

Pay no mind to my appearance..the church outfit I initially put on this morning was the unfortunate destination of Pipers lunch, post consumption. And while baby wipes are super helpful in Target (snack, post consumption), not so much at home when a shower is your best bet.



Oh, my sweet little mini Kelly Ripa. You are an amazing little cook and helper...the dance at the end was especially fancy, but I prefer the one where you don't share the Chex Mix with the floor. You are correct though, it was still "totally fantabulous".




And hello there to you, Piper. Please don't eat that. Don't eat anything unless you want to commit to digesting it. Pretty please?





So making Chex Mix is a super easy and super yummy holiday treat. Plus, its nice to not need a lot of room to prepare it as Piper is actually sitting on the entire counter. Actually, the dish stand next to the fridge is also part of the counter but it doesn't count since I refuse to dry my dishes on the trashcan, which is the only other surface in the room. Thank goodness I found a cutting board to partially cover the stove top and provide me with sooo much more space. And no, I cannot cook over there because the only power outlet in the room is behind the dish stand. Chad often woos me with images of a future kitchen with a fridge that my 5"1 self wont tower over and one of those fancy drawers that wash your dishes with a push of a button...what a man.

Puking and chattering none stop aside it was a pretty nice day with the girls and Chad. At the risk of being selfish and short thinking, I am still prayerfully awaiting the day that I can relax in a normal way with this little family...seriously, I am praying an awful lot for that one these days.

"Hey, its okay"

-to pay the extra money to shop at Publix because they have cool shopping carts
and free balloons and cookies for the girls.

-to wonder what it would take to spend a day or so alone in the bed...and to be
okay if that would require, say, a bout of the flu.

-to wonder how Chad would deal with twin boys. Just to wonder, not to plan for.

-to feel badly for Kate Middleton because I cannot for the life of me imagine
planning a wedding or a marriage with so much scrutiny and rules.

-to find myself daydreaming about sleeping in on Saturday morning thanks to my mom.

-to be a horrible, horrible, horrible Christmas present wrapper.

-to love my daughters unabashedly but still fully acknowledge that Piper screams
like a pterodactyl and that Linley is chattier than Kelly Ripa on coffee.

-to have a mini crush on Coco...and if you know who he is, you are as cool as me.

The part of the conversation that I apparently missed.

This is what I remember:

Me: Linley, its time to get out of the shower okay?

Linley: Can I have 10 more minutes???

Me: not tonight...lets go

***Silence***

Me: hello?

Linley: I'm turning it off

Me: thank you


And I assumed that was all...BUT apparently she really, really, really had more she wanted to say but was a very wise 5 year old who treasures her evening Christmas shows privilege.

(And the answer is that I ignored it because I am pretty sure she got that "get the last word in" mentality from her mother. talk about ouch)

Sleeping Beauties

These are my girls. And they are beautiful.

Piper is indeed, wearing a hat, as she does all the time for some strange reason. She looks and acts just like her Daddy but sleeps just like her Mommy...curled up on her tummy with her hands under her chin.



And Linley still sleeps with her "lammy" as she has since she was 4 months old. She looks and acts just like her Mommy but sleeps just like her Daddy...on her back sprawled out and usually with her arms over her head.



And now I need to go wake Piper up to get some more calories in her little body before dropping this tired body into my own bed, inevitably to be joined about 3:00am by one very sweet, sleepy, wiggly 5 year old and her ragged "lammy".

Love these sleeping beauties.

daybook

I hopped over to the blog of one of my readers and she does this little post every so often. It made me smile plus I hate doing the laundry that is building up as we speak. Soooo...I will procrastinate in a very productive way.

outside my window: are squirrels, which Piper calls doggies and I let her.

I'm thinking: about explaining to Linley that not only "brown boys" can sing rap music but am fearful she may confirm her newest career aspiration.

I'm thankful: for two happy girls to do Christmas crafts with tonight, even if Piper did stick tape in my ear and Linley wanted to make an pair of Christmas paper underpants.

I'm praying: that I will be a faithful sufferer no matter what ick my life has in it.

In the kitchen: there are never more than 2 people at the same time unless any additional people are willing to sit on the trashcan.

I'm hearing: the sound of the 3 year old up stairs who is apparently jacked up on coca-cola and playing with a million marbles every night til midnight.

I'm reading: Not a marriage communication book. No way Jose. Not us.

One of my favorite things: Candy Cane Hershey's kisses. Nothing better.

I'm creating: a pair of earrings with the most gorgeous blue glass beads and wondering who I like well enough to pass these babies on to.

Around the house: there are many messes the maid needs to get to cleaning up.

A few things to do this week: Pipers evaluation for Babies Cant Wait, decorating the house, making some yummy Christmas jello jigglers, participate in Walk to School day with Linley even though its just dumb to walk anywhere in 40 degree weather, making a meal for an expectant mommy friend, counseling with the hubs, writing thank you notes to the sender of said jello jiggler makings and other fantastic supporters of our family, shopping for Christmas presents, reorder Pipers formula and weekly meds, having lunch with Linley at school, going to a Christmas parade, and maybe just maybe a nap in there somewhere for me.

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.

"Hey, Its okay"

to be wrongly impressed that instead of actually sounding out and spelling words to explain the pictures she draws, Linley actually does the initials instead...example: "IWATH" instead of "I want a tree house".

to dislike sweet tea. Actually, I hate the stuff. There I said it...

to halfheartedly wipe the shower walls off with an old washcloth someone left in there and then tell everyone I cleaned the bathroom today.

to sneak into my daughters rooms at night to kiss on their sweet, sleepy faces.

to hold off on doing laundry until Thursdays because The Office and 30 Rock are the only fathomable reasons to sit and fold 4 loads of laundry at a time.

to have both Tori Spelling and Clark Howard on my "ooohh-how-neato-are-these-people???" list.

to have days where I count down the hours to bedtime as I am hitting my alarm clock to get up.

to be 29 years old and just now figuring out how to wear lipstick


And FYI...I don't actually lust after the moms who drive mini-vans, but rather I lust after all the storage, and seat belts and sliding doors. Ahh...

And now we have Maintenance!

Piper has now officially begun Maintenance treatment. I think I wrote a little last week about what all that meant and consisted of. I for one, am not sure what I am going to do once or twice a week instead of visiting clinic. Maybe a hobby? Maybe not?

We made it to our 8:00am appointment, despite the downpour of rain, and she was sedated by 9:30. My mom thankfully came with me because I had a number of questions and I wanted to have total focus to pin the doctors down about her losing weight, fussiness and lack of appetite. She is now down to 6.4kilo (14.04lbs) from 7.7kilo (16.94lbs) at her 1st birthday. And this is not expected at this point in her treatment, she should be feeling better, eating better, acting almost normal...and she is not. Dr. Lew took some additional blood work to test for additional things to attempt to rule out less obvious issues. And yes, her blood work is beautiful with absolutely no sign of leukemia. She does have a UTI and has begun antibiotics for that. He also has begun her on an antihistamine that typically boosts kids appetites and we are continuing to add Duocal to every little thing she puts into her mouth. They have told us we can discontinue the Diflucan, but this still leaves us juggling 9 different medications dosed out multiple times throughout the day and week. We need to go back in 2 weeks to see if she has begun to gain weight and if she continues to trend downward we are visiting the GI Doctor for some answers. The use of an NG tube is the next step if she will not eat consistently on her own and nobody wants to begin that at this point in her treatment plan.

So there you have it. Some good news with some "meh" news. While her treatment is simplified we are finding the side effects of over a years worth of chemo on a tiny little body. And while we are in maintenance, we are not out of the woods. Piper is not cured but she is still in remission. Remember she must be cancer free for 5 years to be considered "cured". While that seems like a very long time away, our prayer is that the worst is behind us forever.

Update 10/21

First things first, the Light the Night walk was an amazing experience. I have big, big plans to do a post about it but that wont be tonight. Also, Chad and I were able to take a weekend trip to New Orleans last weekend and again, big big plans to post about that one too. But...

Tonight I was just going to do a quick update. Piper is doing well. I say "well" instead of "wonderful" because things are still ehhh sometimes. She is not walking and I am worried that there has been some sort of muscular or nerve damage. On the other hand, I have been told that Maintenance should be different and that she should begin to catch up. As of right now she is still extremely picky about food, losing weight, not wanting to walk or be anywhere but on my hip, and does not verbalize much. She is signing some words (eat, milk, water, more, hello) and she will eat the heck out of one or two foods at a time. Seriously, right now she is digging cheddar cheese popcorn and vanilla yogurt. More than anything it is a frustration rather than a worry. I spoke with the social worker at the clinic on Wednesday and she began the paperwork to begin Piper on Babies Can't Wait...a program that caters to children with either disabilities and/or delays. Piper more than qualifies and we now await a call and a consultation. Hopefully we will be able to enroll her in oral therapies, for speech and eating and physical therapies, to strengthen her limbs. And that is that.

Piper was supposed to begin Maintenance on Wednesday, but her platelet counts were too low and she was delayed until this coming Monday. She is off all chemo until then and while that is a blessed little break, it only delays what we are eager to begin and someday, end.

Next Mondays chemo appointment is a little more in depth that usual. Because she is being sedated, she is unable to eat anything after midnight. She (blessedly) will get the first morning slot and will be given propofol to enable her complete sedation in order to be administered chemo into her spine. It is 2 (methotrexate and cytarabine) types plus a different type (vincristine) into her port. When she awakens she will be allowed to eat and drink and get the heck out of there.

Throughout the next 11 months of treatment she will have this sedation chemo every 3 months. Instead of visiting the clinic weekly or more as she has since her diagnosis she will only be there once monthly. Each month at her visit if she is not getting sedation chemo she will get a simple chemo push (vincristine) and a count check. Each clinic visit will follow by 5 days of twice daily steroids. At home she will continue with nightly 6mp and weekly oral methotrexate. While this sounds like a lot, I am told that Maintenance not only is a good milestone to achieve but also a chance for Piper to begin feeling better.

I just don't know what to expect so I am just rolling with what I do know. We need some prayers. Its been an amazingly rough year but I know we are blessed to have Piper come through it relatively unscathed. The worst is behind us but I need the wisdom to discern how much to "cater" to Pipers moods and how much to encourage her to become independent. Linley is doing wonderfully but I know she wants and needs more consistency in her world. Hopefully this is the beginning of yet another new normal for the Needham crew. And hopefully it is going to be a GOOD new normal.

two sweet fancy faces

At the risk of being hoity-toity, I have to confess that raising two healthy daughters is cake. Of course I rarely see both girls healthy but right now Piper is absolutely wonderful. Linley is always absolutely wonderful.

I have found that it obviously is a juggling act. Two schedules, two very different ages, two personalities, two types of health issues and two incredibly grand little fancy faces. I love it. I find great solace in watching Piper cuddle into my lap while Linley curls up next to my hip. Why anyone would ever chose to not raise children is beyond me...even with my life not happening quite the way I had it planned out.

I don't allow myself to worry about doing laundry every day, making perfect meals, getting Piper down for a nap or Linley taking a bath every night. Sometimes I lose my patience but I am now beyond certain that both my daughters completely get the idea that we all apologize when we make mistakes. And though Chad does not understand why I make the bed every morning (first thing out of it) it is because there is a very good chance that it will be the only organized thing in the house by noon.

I am okay with all of this as long as my girls are "healthy"...its the days when Pipers illness is obvious by her neediness or when Linley's inability to completely comprehend all of this shows in her attitude. That's when I struggle. But for today, I am rolling with two sweet little fancy faces who love their mommy a fraction of how much their mommy adores them. Isn't that the way it is supposed to be?

"Hey, it's okay"

to have 13336 unread messages in your email in-box.

to be thrilled when Piper poops and it is all IN her diaper, as opposed to leaking out.

to be annoyed that cowboy boots are in style...darn stylist copycats.

to lust after moms who get to drive mini vans.

to walk out the door to take Linley to school in only a sleep shirt and semi-pause while contemplating whether that is appropriate enough to drive her to kindergarten. its not.

to still get totally nauseated on the way to clinic each week until hearing good blood work results.

to ask your hubby whether he is ready for another baby even though you aren't either.

Hayes Family

Last summer whenever I heard the word "cancer" I shuddered...but in that whole "can you imagine?" way. Now I shudder because I dont have to imagine, I know how difficult it is on the entire family. And now I hear of people who have cancer all over the place.

I have a friend named Kelly. She and I lived together in Texas way back when we were volunteering as missionaries. Kelly is vivacious, hilarious and a joy to be around. Kelly has a son who is 3 and a daughter who is Pipers age. Kelly is married to a Godly man who loves her and respects her and mainly, loves the Lord. His name is Andy. And Andy has cancer. If I am not misstaken (and correct me if you need to Kelly) Andy was diagnosed first with sinus cancer. After being treated for that he found out that the cancer had spread and there were now tumors in his brain and spine. He has undergone chemo, surgeries and radiation. He was told today that they are giving him 3-6 months left to live his life.

Kelly and Andy are believing that God can heal Andys body. I believe it too. But sometimes God choses to take us down very difficult paths and we have to trust that His will IS both sovereign and good. So irregardless of what Andy, Kelly, Travis and Jenna will endure in the future I mostly pray that my God will hold them. Please pray with me, with desperation, that God will heal Andy and hold the whole family. Cancer still makes me shudder but now I am fully confident that being held and comforted by my God is truly enough to manuveous me through another day. I pray that over the Hayes family...will you pray with me?

weekly clinic visit 10/6

I don't usually stay as on top of Pipers clinic visit updates as I should but I have 4 (yep, 4) loads of laundry about to be ready down at the laundromat and I am not down with doing them quite yet. And so I will use this blog as a handy-dandy procrastination tool.

Piper, me and 1 bazillion of our closest friends headed down Interstate 85 to Atlanta this morning. Pipers appointment was at 9:30am and we were in and out in about an hour and a half. We have the drill DOWN.

*Get in car, drink milk, stop and get donut/biscuit, arrive at Scottish Rite, unload most of our earthly belongings into the best stroller ever made, (wave, wave, wave and smile), walk across the street, scream because we cant push the red alarm button in the elevator, crack open the donut/biscuit bag, arrive at clinic,(wave, wave, wave and smile), have blood pressure checked, temperature checked, heart rate checked, keep noshing on donut/biscuit, prick our finger and get some blood, stand on scale like a big girl, (wave, wave, wave and smile), be placed in a tiny room, attempt to stick finger with band aide in nose and giggle, yell, leave tiny room, roam the halls and make new friends, growl at new friends, get tracked down by Ms Lois and dragged back to tiny room, hear how grand we are, get happy news, leave tiny room, play with toys, get tracked down by Ms Kim, back to tiny room, lay down, sign "eat", lick crumbs from donut/biscuit bag, lay down again, get my port accessed, quickie chemo push, sit up, (wave, wave, wave and smile), walk towards the elevator, stop to smear "magic soap" on our pants and shoes (???) at the lobby, walk across the street, buckle princess grumps into her car seat with milk and doggie, load most of our earthly belongings plus some back into trunk, get myself settled into my seat, stare out the window for a second, and drive back down Interstate 85 with a few less of my 1 bazillion new friends.


The happy news is that next weeks chemo is the last before Maintenance begins. Of course, we are practically walking uncharted territory with Piper and her diagnosis, but the longer she goes without relapse, the more hopeful we become. And Piper is doing pretty well. All of her blood counts look great and right where they want them. Nurse Lois and I talked a little about getting Piper signed up for some therapy to work on her eating and walking. And Pipers weight did go from 6.7 kilo to 6.8...multiply it by 2.2 and you have her in pounds. She is so very small but looks less like a refuge after every chunk of cheese she downs.

The rest of the afternoon consisted of Target, the library, the playground, stupid laundry, warming up left overs for dinner and taking a night time walk. Both girls were exhausted by 8:00 so we forfeited baths in favor of extra stories and yummy bedtime milk. Which leaves me with plenty of time to fold those 4( yep, 4) loads of laundry waiting for me. Unless Facebook needs me when Blogspot is done. And I am pretty sure that it will.

"Hey, its okay"

to wash your face with the hand soap next to the sink because the face wash is 6 steps to many away in the shower.

to wonder if a sister-wife would be a good addition to the family.

to realize that having a junk load of laundry is no reason to share my husband every other night.

to get giddy when the weather cools enough for cardigans (I lurve cardigans).

to have days where it is very, very, very difficult to like your children.(but to chose to kept them anyways)

to accept that marriage counseling should just be a given throughout your marriage.

to get totally itchy every time you watch Hoarders.

to admit to yourself that you really must watch too much TLC.

to rock a ponytail every day.

"holla"

Today as I was pulling away from my moms house, Linley screams out the car window "Holla at a playa if you see him on the streets, Nana!". Seriously. Was I surprised? Nah, I love the word "Holla" and have even gone so far as to encourage Linley to follow up the word "Dollar" with "Holla" each time because I believe somewhere down the line she may have a career as a rapper. Okay, that's not really true but I do think she is awfully cute with her street cred.

Perhaps she has been throwing this street lingo out at school and really impressed the teacher. I say this laughingly because Linley was just named Student of the Month at her elementary school because apparently she exemplifies being Responsible. And she is. I love that she wants to be in charge and helpful and I love that her teacher is encouraging Linleys ability to do what is expected of her with a cheerful heart.

Once again I am reminded of how blessed this sweet 5 year old has made me. And if she makes mad cash as a rapper while balancing her spouse and children and home, I will be a very, very happy "playa".

"Hey, its okay" (but it is not) Friday (anymore)

Here's to me missing my very first self imposed deadline for this "hey, its okay". In my defense I went to a cookout and relaxed instead. It was lovely.

But, "hey, its okay"...


*to visit the grocery store Every.Single.Day because for some reason it is the only place that Piper is contented this week

*to sign "Mommy" on your new library card and not realize it for an entire month

*to laugh at the new clothing called jeggings

*to secretly try on a pair of jeggings at old navy

*to find out that jeggings are just fancy leggings and are fantabulous

*to think the magic erase marker is seriously magic

*to mentally kick my husband every time I cannot find the covers in the middle of the night all because he has some strange aversion to foot boards

*to wear my cowboy boots to a "business casual" luncheon...and I am certain that my mother will be most disappointed. She does not love said cowboy boots.

Flagpole magazine

My Piper is a Star. Our local paper found out today...she was written up by a dear friend of ours who is also a journalist. (pick your friends wisely, eh?)

So here it is. A little glimpse into the last year. And what a year it has been. And what amazing little girls I have. And what a blessing that today I am able to acknowledge this amazing little life I have.

http://flagpole.com/Weekly/Features/SurvivingTogether-22Sep10

Light the Night 2010

Piper has been through so many sedation's that I have lost count, and yet somehow I never will be accustomed to watching that sweet girl fall asleep in my arms. Each time she will have exhausted herself sobbing from being hungry and each time I will hold her as the doctor injects her port with enough sedatives to allow her to sleep through the powerful chemotherapy medications pushed into her spine. And every single time she wakes up, drinks some milk and smiles and walks her way out the door. Simply Amazing.

Today was her weekly clinic visit. All of her numbers look wonderful and strong. I cannot explain the shortness of breathe I get every time they prick her little finger and I await the results. So far, God has been gracious to us and I am praying every day that He continues to protect not only her but our family, from having to encounter this monster again.

On October 1st at 5:00pm here in Athens we are joining the Leukemia and Lymphoma Society at Light the Night. Light the Night is the annual fundraiser for both children and adults who have been affected by these forms of cancers. Donations and support are necessary to provide the means to continue to do research. If anyone is interested in walking with us or donating to our team please let me know(sus581@yahoo.com). Our team name will be Perfectly Piper.

We look forward to seeing those of you who are supporting us!

"Hey, its okay" Friday

It has been a week. Piper thinks my hip and a nasal whine fits the bill for every occasion. Chad has had some very late nights and big tests. And sweet Linley is confused about why she isn't special enough to be "student of the week" yet...she IS kind, she tells me.

And so...Hey, its okay...


*to have a crush on Doug Heffernan And see a little of your own self in Carrie Heffernan, sadly. And if you have never watched King of Queens then you should feel guilty for that one yourself.


*to not be a lazy mom just because you think that kindergarten should never, no not never ever start at 7:40am.


*to stay up til the early hours of the morning because you need that blessed "me time" more than the actual sleep time.


*to allow your 1 year old to totally unwrap the toilet paper in the bathroom because for 5 blissful minutes she was playing by herself and NOT on my hip.



*to trash dinner and grab Wendy's because the fire alarm keeps going off and all you are trying to do is boil water.



*to yell at the young cat on campus out who walked right in front of my car and then flicked me off. I called him "buster" if you must know...


*to really, really, really hope that business casual actually means "ladies, wear those comfy yoga pants!".

Same time, last year.

This time last year was our last night of "blissful ignorance". Chad and I, while spending the night at the local hospital, had no idea how awry our life was about to be. We had no idea that the next morning our daughters pediatrician would walk into the room and tell me, with his own tears in his own eyes, that our Piper was being diagnosed with Leukemia. That is all we knew. Chad and I spent the next few hours waiting for transport to take our sweet 10 week old daughter to Scottish Rite in Atlanta...we had no focus, we had no strength or semblance of mind to call anyone for help, we had no earthly idea what Leukemia meant for our baby. Oh, but we found out.

Neither of us were allowed to transport with Piper, so we got into our sedan and followed 4 strangers in a strange truck as they lead us into a world we were grasping to comprehend. The entire drive there I looked out the window and remember watching the rain pour and the leaves wallow and sobbing. Then I would reach out for Chad and he would sob. We spoke so very little, not because we didn't want to but because we couldn't. Simply.Could.Not.

At the hospital we were told to ask for the Aflac floor, so we did. The pity on the ladies face at the front desk was paralyzing as she pointed us down the halls. We both rushed past the Aflac Cancer and Blood Disorders Services wall sign and reached our daughter as she was being settled into a crib and surrounded by nurses who would soon become my confidants, friends and caretakers.

I say that I do not remember the next few days. But, I remember tests being done. I remember holding her and wanting to know what was going on. I remember asking questions when there simply were no answers to be given. I remember Linley showing up and dancing around, oblivious. I remember being told to shower. Being told to sleep. Being told to eat and drink. I remember those of you who came and held me, or called me and listened to me alternate between confidence and pure hysteria. I remember the letters that flooded the room. I remember waking and feeling that gut wrenching, mind numbing realization flood my soul again. I remember walking the halls. I remember holding Piper, kissing Piper, sobbing over Piper. I remember calling Linley and feeling so very, very far away. I remember looking at my husband and being terrified at what this meant for us. I remember not having any energy to pray but dreaming night after night of my God sitting in the chair besides me sobbing as I was because I was His child and I was suffering. I thought I remembered so little.

This night a year ago I rocked my baby girl to sleep, resting myself, assured that whatever had brought us here was simply being fixed and wondering if I had remembered to take the trash out before leaving the house the day before.

I have never been one for cliche phrases but this was the day my family lost our innocence. We had very little in this world and that was what we clung to...and it was stolen. In its place I have gained Peace. Being Loved. Being Held. Faithfulness. Hope. Most of all has been the grave understanding that we DO live in a fallen world. My daughter and my family are proof. But my God has sobbed with me. And He is still loving us, holding us, showering us with His sweet Peace and Hope.

That is what has remained. For 12 long months we have struggled. We have looked at ugly in the eye and chosen beauty. I still choose the beauty that my God has in store for my family and I chose to remember the details of Pipers last day of innocence because it is there that I am strangely able to truly remember my Gods unfailing and unwavering Goodness.

"Hey, its okay"

I am a firstborn, a wife, a mother and a perfectionist. In a nutshell, I have a lot of guilt...lots. And I have lots of opinions as well. Lots. (ask around, its undeniable) One thing that I wish I had the energy to be guilty about is reading Glamour. But I dont. I need to know what is going on with Justin Beiber (who else knew that "Baby, Baby" was sung by a BOY???), what fashions are going down on Rodeo Drive (because truthfully, behind my black flip flop collection I have many pair of Jimmy Choo shoes...no, I don't know who he is either.) And really, being as conservative as I am, I just need another source in which to bring up new opinions about life. That part is partially true.

So while I neither wear Jimmy Choo shoes (who IS that???), listen to little boys sing soprano or hold back from questioning the way others do things, I do often feel guilty. Thankfully, my God covers my guilt and opinions with Grace, but sometimes I just have to laugh at myself. And Glamour has a running article called "Hey, its okay" in which other ladies (probably first born mothers like myself) can write in on something that was done that they are choosing to laugh at themselves for...and hopefully feel a little less guilty about.

Here's hoping. I am going to do this about 1x a week. (Or every day when life gets a little too much.) Feel free to post your own "Hey, Its Okay" and I promise not to judge you...but I may feel guilty right along with you, friends.

So...Hey, it's okay:



*to deliberate for a minute about taking your daughter to the ER when your older daughter beans her in the head with a piece of brick, because you have already been at the hospital 3 times that week



*to think that rompers belong on my 5 year old not the college chicks around town


*to sit outside and drink a beer instead of doing the dishes


*to wonder just why Rod Stewart is having a 7th child at 65 years old???

I dont like to think about that.

...and to be clear, I do not intend this to be a whiny, complaining tirade. Lets just remember that it is simply one more attempt of my own to chronicle this journey with utmost honesty.

My Piper looks a wee bit like a refuge. I don't mean that lightly or laughingly but truthfully. Between the multiple daily puking and the lack of appetite from high dose chemo, she has lost about 2lbs. This isn't much on an adults frame but she had securely held her own throughout the first 7 months of treatment. At her 1st birthday she was right under 17lbs, small but decent given circumstances. At her visit last week she weighed in at 15lbs. And she looks it. I have had to dig out her 3-6month clothing. Her little ribs show, as does her port. She has lost those fantastic cheeks and just plain looks like a kid who is fighting cancer. I don't like thinking about that.

Perhaps this hit me today because I was kissing on my 2 month old nephew Gunner today. Gunner is delicious. He is a roly-poly little guy with cheeks worth nibbling on. And he is a very healthy 15 lbs. The same as Piper. I also got to kiss on my cousin Wades little girl Alaina, who is almost 4 months old and had to pinch away some of my tears a few times. She was so healthy. So vibrant. So vibrantly healthy. She spent the day smiling, drooling and rolling over. Piper at 4 months old was lethargic in the bed. I don't like thinking about that.

What I do like thinking about is that we are nearing what is supposed to be the end of the rough stuff. I have no idea what to expect after the next few weeks of weekly chemo ends and we begin maintenance. Supposedly she should begin feeling better, thus catching up on being normal. But I don't know. I am first and foremost thrilled to have kept Leukemia far away for as long as we have but I am still a mom. I still struggle with comparing my daughter with other little girls and boys. There simply is no comparison. I still really, really don't like to think about that.


Perhaps, in true southern style I will mimic the great Scarlett O'Hara who said, "I cant think about that today, if I do Ill go crazy. I'll think about that tomorrow." That's how I have made it through the last almost 12 months so I think I will just stick with what works.

coke and "crack rock" soup

I couldn't make this stuff up if I tried to. Piper was contented to lick the spout of an empty coca-cola bottle while Linley was collecting rocks and leaves to apparently cook me up some " crack rock soup". Both were happy. Both were oblivious. Dfacs will probably visit soon.

Maybe it was because I had Linley quarantined in our bedroom all (beautiful, low '80s fantastic) day long. She has a Cold. I do not have time for all that. Pipers counts should bottom out any day now, thankfully she gets a shot every night to boost her white blood cells while being Neutropenic. I am seriously praying that Linley kicks it quickly because she is not happy about having to stay away from people...and neither am I. The Georgia Bulldogs first game of the season was today and Chad and I wanted to take the girls to some of the pre-game festivities. But we couldn't. Then Chad had to work and I was beginning to feel foggy from the last of motivation. I finally broke Linley out of the room to take an hour long walk searching for paintable rocks, (aka: free and fun crafts) then the girls and I ate macaroni and cheese and coke and "crack rock soup". What sort of fun did you do today???

Inpatient chemo is done. Done. Done, Done.

We are almost there my friends. Almost to the half way point and supposedly, a little more normalcy. And that would be wonderful.

Our visit was actually pretty good. Piper was a trooper and as usual, she totally melted all the nurses and techs and anyone else who wandered into her path. She ran no fevers, and only had that same ARA-C rash that she gets every time...small red dots that travel all over her body but never seem to bother her. Piper's first night was incredibly busy as poor Nurse Heather had to be in and out all night doing vitals, chemo and eye drops. She attempted to consolidate as much as she could each visit but so much of Pipers treatments are timed...and not with sleeping as a priority. At the suggestion of Dora, Aidyns mommy, we traded out Pipers crib for a regular bed and she slept through every thing on Wednesday night, all curled up to me. So, so, so much better than sleeping in that uncomfortable chair with her on my chest all night. ugh.

We finished up with the ARA-C at about 9:30am on Thursday, waited the 3 hours to begin the last chemo infusion, peg-asparaginase, which ran for 2 hours. We then found out that Pipers hemoglobin was 7.9 and they transfuse at 8, so we knew since her blood counts were only going to drop more that she needed a blood transfusion before going home. When all was said and done we were able to leave at 7:00pm and I made it home right before Miss Linley faded off into dreamland.

Major thanks to both my mom and sister for helping me out at the hospital and major thanks to my mother in law for holding down the fort here at our home with Linley and Chad. Charlotte made this homecoming the best yet...no dishes to do, a stocked fridge, Linley all prepped for school the next day and the laundry all folded up. I cannot tell you how much of a blessing all 3 of those ladies were to our family.

So now we wait, again, for Pipers counts to drop. She will become Neutropenic (zero or close to no white and red blood cells etc) and last time this happened after this chemo she ran a fever which resulted in a nasty infection in her port line and a 9 day hospital stay. I am praying we can skip the fever this time, but truly I just want to skip the Leukemia ever showing up. As of right now, she is still feeling pretty good and surprisingly has not thrown up once since Monday.

As I have said before this was Pipers last planned hospital stay. Obviously, I am aware that she will still be required to go in for fevers and the like, but no more chemo. Praise God! She will have a sedation with chemo around the middle of the month, followed by 3 weeks of weekly Vincristine chemo at the clinic. And then Maintenance. Ahhh.

These are a few pictures that I took during our stay. I planned to take more but really, Piper keeps us moving. This is my mom, Piper and I at the entry way into the Aflac unit, Piper pushing around her favorite toy as me and my mom chase her with the IV pole,Piper noshing on some yummy curry rice, Me and Piper sleeping in a better place that the darn chair, and the last chemo hanging on the Iv pole as well as her Beads of Courage...she now has 8 strands. (You cannot see the details but each white bead is a chemo, each black bead is a "poke" or needle prick, each red bead is a blood or platelet transfusion etc...)

This is Labor Day weekend and I am hoping that Piper feels well enough for us to do some fun stuff. We can never make plans but we sure are getting good at being spontaneous. :)

Calm before the storm

Well, we are here. Not in a horrible room. Got one of our favorite nurses. Its sort of like a vacation if I dont think too much. (you know, clean towels and free shampoo)

I was pleasantly surprised to find out that Piper will only get the eye drops every 6 hrs not every 4. I know this isnt a big deal but that is a possible 6hrs straight of sleep for me. I usually get about 5 per night so that is definitlye being added to the whole vacation feel. The cafeteria food manages to balance it all out though.

My sister Hannah came with me to the hospital to help out, or really just to crack me up. She is thrilled to have been able to park in the physicans parking lot since the normal one was filled up. She spent the better part of the afternoon talking about finding one of those white coats to wear back out to play the part in full, but really she just forgot her car was a lime green saturn and that is so not doctor-ly and would not fool anyone.

Before entering the world that is Childrens Healthcare of Atlanta and the Aflac unit we got some yummy curry from the best place in the world, Tin Drum. Delicious for me and Piper as well. And after she polished off some curry she snacked on some Hot Tamales. Seriously. Who has sensitive taste buds? Not my little girl.

So here we wait for the next 3 doses. Not really exitedly but ready as we will be. I do have a prayer request for you guys. As I have said before, most of the families we met at the beginning of Pipers treatment have since moved onto all outpatient or simply finished up. One family is still very much embroiled in a fight that is wearing the whole family down. Little Aidyn was diagnosed with a germ cell cancer when he was 14 months old. I am not sure of all the details but basically it continues to come back. He is now 2 and a half and has been through many, many chemo treatments, radiology and still the cancer is growing. They have recently put him on an incredibleyl difficult regime for the next 6ish weeks that involves all high doses of chemo, another round of radiation (if he is strong enough) and very few breaks. They are praying that he makes it through all of this and that it does the job. The regime has never been done on anyone but adults. As you can imagine his mother is worn and tired and so very full of grace. Please pray with me tonight for that peace only our God can give. And an extra measure of hope and strenghth as well.

I think that is all. This is the calm that is before the storm. I appreciate all the prayers for both our family but also for Aidyns.

Here we go.

Last time we were prepping to head into the hospital for chemo I said "bring it on". I dont feel quite so confident this time because frankly, each round seems to be hitting Piper harder and harder. Or maybe because she is older, I just don't know. Either way it is definitely sadder, messier and more exhausting. I can only hope any hidden leukemic blast cells are feeling it too...and disappearing forever.

Pipers appointment is at 1:30 tomorrow and they should begin Ara-C chemo within a few hours. She will get a dose every 12 hrs until 4 doses are given. (Ex: 4pm Tues, 4am Wed, 4pm Wed, 4am Thurs) Each dose runs for 2 or 3 hours I believe. After her last dose she will wait 6 hrs and get a shot of peg-asparagine in her thigh. Providing she gets no fever she will be in and out pretty quickly. Throughout the time we are there she will get steroid eye drops every 4 hours to ward off chemical pink eye, which is common with Ara-C. She will have to continue the eye drops for 48 hrs after we discharge.

A fever is very common with Ara-C. Piper has had this type and dose of chemo 2x before. The first time she had a fever at the hospital but never got one when her counts all dropped. The second time she had it she got no fever and we had a short visit but she developed a fever 8 days later that resulted in a 10 day hospital stay and an infection in her port. Ugh. I have no idea what to expect but I am praying that this is the final boot to leukemia.


So here we go. Piper is doing wonderfully. Linley is not too thrilled that I am gone for 2+ nights but she is very happy about Chads mom coming to stay while I am gone. Linley does get that this is the last time we have to go to the hospital for "medicine". Thankfully, I can tell her that Piper will only have to go if she gets fever. And she is definitely thrilled about that.

Tonight I am busy wrapping up loose ends for Chad and Linley. And doing my fair share of praying. And maybe, just maybe I will squeeze a little praise in because I still have my head and we definitely cant have mommy losing it anytime soon. :)

And remember that this is Pipers very last inpatient chemo! Praise God!

Beautiful

Breathe in. Breathe out. Life is beautiful.

Obviously, we are well. I am only letting you know lest anyone think I am falling to pieces again. Because I am not. I even slept straight from 12:30 to 6:30 this morning, which is the most sleep I have had per night in well over a month. I felt like a new woman and celebrated by shaving my legs. The whole house rejoiced. I made pineapple zucchini bread. Both girls are eating like its going out of style. Chad is school free for the weekend. And I am even reading an (almost) good book.

And so Life is beautiful. In truth it always is, but today it feels simple and beautiful. I love that.

I leave you with the Needham dancing song for the week...I love it because:

A) Pipers fuzzy little head begins to bob and her gummy smile breaks out
B) Linleys toes get to itching and she hikes up her skirt and dances with abandon
C) Chad peers at me with a smile on his face
D) I find myself singing it in the midst of the fresh fruit at Kroger irregardless of not knowing any words beyond "alabama, arkansas I sure love my ma and pa". And not minding.


Life is simply good.

Hello Toes...

...I just have to show you off. You never looked so fancy. And all because a sweet girl from church sent me an incredibly kind and encouraging note way back in December (or January or March or October, they really all run together) and included a gift card to a local day spa for a pedicure. She didn't know that pedicures are my favorite weakness. And she definitely had not watched me walk the halls at CHOA and watch my feet swell and my legs ache. She had no clue what this meant to me both physically and emotionally. And I finally had a chance to use it. I followed it up with a jaunt to Barnes and Nobles where I picked up a magazine that I could zone out to uninterrupted. And instead I napped uninterrupted for an hour. I can only imagine what people were thinking of me. I'm going to tell myself that they were only noticing my pretty toes.

This was a good day filled with three fantabulous and reviving hours.