Tuesday, August 31, 2010

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.

Monday, August 30, 2010

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!

Friday, August 27, 2010


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.

Thursday, August 19, 2010

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.

Tuesday, August 17, 2010

Mommy had a "melt"

When Linley was about 3 she went through a stage that involved her fair share of meltdowns. So many in fact that she began to just call them "Melts", instead of wasting all those syllables on a time taker word like meltdown. As in, " I had a Melt at the park today because you wouldn't let me eat the dirt." Something along those lines.

Anyways. Mommy had one. It was a doozy. My mom came running. So did some of her friends who fortunately/unfortunately live close enough to save me. It was difficult but my mom said that she has been waiting for this for 6 months. (What can I say mom, I just didn't have the time.) There were tears. There was a little bit of smiling. There was one amazing lady who took both girls and kept them until those tears subsided and the smiling became more frequent. There was another amazing lady who came and took away the puke filled sheets that sent me over the top and returned them warm and clean. And there has been a good many folks who have called to check up on me since then so either mom sent out an APB or God wants me to get some encouragement. Gotcha God.

The Melt came and the Melt went. And when I stood that night in the hot shower and cried those familiar tears that both drain and refuel, it was brought to my attention once again that I am taking too much on. I am worrying about things that I have no control over. I am worrying about things that are already in motion. And most of all I am worrying about details when I already know the ending. My Piper will someday die. As will I. And the rest of the world also will someday awaken face to face with a God who wants to know why we wasted our time worrying about a plan that He already secured the outcome of. His unending love covers the pains that I feel. And my job is to simply trust. It is both the freedom and the security of a God who loves me even more than I love my Piper and Linley.

Since Piper's diagnosis, aka: the day that shook my family forever, I have leaned on worship. A dear friend of mine who once walked through losing her twin boys at birth told me then to just listen. When I had no energy to talk. No time to read, I should just listen to worship music. (She then sent me 10 CDs to show me how serious she was...love her) I have received many CDs from countless others and at one point or another, I have found most songs to ring true in that moment. Lately the song All I Need is You by Kim Walker is my song. It rings true and it is what I desire. It touches me and I highly encourage you to check it out. That's where I am at, if anyone wants to know. Melts and all.

Sunday, August 15, 2010


It's 4:34 on Sunday. Piper is 6 days post beginning this round of junk. And she feels very, very junky. So junky that Chad stayed home from church with her and so junky that she doesn't want to eat. Which causes all differ ant and unwelcome problems. As of right now, she has drunk about 10oz today and 4oz of those were given by syringe. She sits up and snacks every once in a while but mostly sleeps, whines and cuddles. Please pray she begins to eat SOON...if she dehydrates again we have to go back inpatient and I am not sure if anyone in this family can handle that right now.

Tuesday, August 10, 2010

My own Miss Fancy Pants Kindergartener

Linley loved Kindergarten and Mommy didn't embarrass her by sobbing. Overall, I would say Kindergarten shows great signs of being good for all involved. She bounced out of bed, happily ate her waffles, dressed in her new shirt, got "fancied up" with a hairbrush and a toothbrush and got to school on time. Linley had already met her teacher and knew that her best friend, Lylah from here at UGA was in her class so that was an additional boost of excitement. Plus her classroom has a loft and 7 fish, which surprisingly are 2 things that she has often begged us for at her own home. Score one for school being awesome.

As I mentioned before, Chad and I were both able to drop off and pick up. And of course, we had to have an ice cream date to celebrate the day. And of course there was a complete and total meltdown by 5:00 because she was up before God rose the sun and that is not in our nature to do. My Linley was a contented Kindergartner when she finally plopped herself into her bed and I was then free to contemplate doing all that sobbing. But I didn't because I was just so very proud of my independent girl...she just thrills me to no end.

Piper is happy and puking.

I wish I could simply write that Piper was doing wondefully but I can't lie. My 5 year old often reminds me (as she should) that lying is a sin, so we make it a point to not do too much of it. And so, Piper is doing ok. She has done 2 out of 5 days at the clinic without major incidence. Unfortunatley, after 4 WHOLE days puke-free she brought up her donuts this morning and then again at bedtime we revisited Pb and J sandwiches. Not fun for anyone. She is though, very happy. I am impressed with how cheerful she is, even when I am cleaning up her little face after a mess. She is being silly, energetic and sweet....just what we needed. Tomorrow is Chad and his moms visit to the clinic with Piper while I stay home and do the Linley side of things. And an awful lot of laundry as well.

Poor Piper hasnt slept on her actual bedsheet in over 2 months. She has been battling nausea and vomit off and on and it is much easier to have her sleep on a beach towel that is easily moveable when its christened. And fortunately, we hadnt changed that habit last night like I was planning. Unfortunately, the other people at the laundromat must think I am quite the pampered wife with all my pool time.

This is Piper eating donuts at the clinic today. I have found (by some weird coincedence that has nothing at all to do with my own love of Dunkin Donuts Caramel Blast and a simple cake donut in the morning) , that Piper loves the simple cake donuts from DD. She has not been offered a more sugary one and that is fine by me. But boy, does she like her donuts...she ate 2 before showing them back off to me an hour later. And tomorrow is Daddy's turn. Yesss.

Sunday, August 8, 2010

Gearing up for crazy.

Tomorrow morning, super early if I might add, Linley begins Kindergarten. Chad and I will be among the throngs of whimpering and incredibly proud parents kissing their prized possessions off to another's responsibility. A little too emotional and scary if you ask me. But apparently an education is important for a 5 year old, especially if she needs to be curing cancer for kids like her sister. No pressure Linley, you super-genius you.

In all seriousness, Linley is thrilled. She needs to have some structure and some familiar faces day to day. She is very smart and is very sweet and is necessarily bossy should anyone take her watchfulness as timidity. I am confident that she will excel and I am proud of that little princess.

And just in case I have too much free time to worry about how she is doing 2 miles away, I can always call my mom and check on the other daughter. Because my mom is amazing and is taking Piper in for chemo tomorrow ALONE so that Chad and I can both be there for Linley on "the mostest important time in my very entire life mommy!". Piper will be having the 2nd to final round of chemo before she begins the much anticipated maintenance phase. Fortunately I have lots of "friends" (haha) who are oncologist/hematologist and they dig my Piper a lot and stuff so we were cleared to come in every morning and leave every evening all week instead of checking in to Hotel de Choa. The actual chemo will run for about 4 hrs and the "rescue drug" (which coats the kidneys) and the fluids will run an additional 4. That is 8 hrs total and that is a small, small, small room, folks. And Piper is a busy little, non-self walking little bugger so keeping up with her while dragging an IV pole around is not for the weak.

So please pray for my mom, myself, Chad and all the other helpers who are aiding us this week. Its going to be busy but I have felt extra impressed to pray for the effectiveness of these drugs. Thankfully, this past week has been heavenly as Piper has fully rebounded from what we are thinking was horrible acid reflux. Of course, not being able to know symptoms from my word-less wonder makes everything more difficult. But her Prevacid dose has been doubled and she a world of change! Watching her and Linley playing so happily together melts this non-emotional mommy...its what we have prayed for for so many years. Just in time for a possibly painful month but at least I am feeling rejuvenated and up for the challenge of it.

And I am up for it. So bring it on...Both Kindergarten and Chemo.

Friday, August 6, 2010

Zoo Atlanta

Piper stopped puking for an entire 3 days so we confirmed no rain for the day and loaded up the Camry and headed to Zoo Atlanta. Linley was thrilled, especially seeing as our small local zoo has 2 sleepy bears, an alligator and a few cool owls. She thought I was kidding when we told her there were giraffes and flamingos actually AT the Zoo as opposed to the neato books we pick up at the library. (Is that as sad as I think it is or am I just overthinking as I am apt to do?) Either way, the Zoo was awesome. My parents and aunt and uncle went in and bought us a years pass and we are psyched to go back...often. Happily. Here is the proof that we left the house yet again this summer. Proof that we were able to enjoy little snippets of this summer. Not how I planned but on Wednesday both girls were fantastic and these pictures are proof.