Sunday, August 28, 2011

"Sisters, sisters"

"There were never such devoted sisters,
Never had to have a chaperone, no sir,
I'm there to keep my eye on her
Caring, sharing
Every little thing that we are wearing
When a certain gentleman arrived from rome
She wore the dress, and I stayed home
All kinds of weather, we stick together
The same in the rain and sun
Two different faces, but in tight places
We think and we act as one
Those who've seen us
Know that not a thing could come between us
Many men have tried to split us up, but no one can
Lord help the mister who comes between me and my sister
And lord help the sister, who comes between me and my man"

Because I lurve (not only love but lurve) old movies, I am required to love White Christmas. And I really do.

(Hello Bing Crosby and Danny Kaye!)

I also am a big fan of my sister. And when Chad and I found out that Linley was getting a sister we were thrilled...sisters are just such a novel concept, such a good idea God. Thanks for that.

Unfortunately when Piper was diagnosed and the last two years have been so very bad at times, the bonding part for her and Linley was ridiculous. A whole lot of one step forward and 72 steps back. When we were home and Piper was feeling well we were blessed to see them connect. When we were here and Piper was sick she could be downright mean to her big sister...such a horrible thing for Linley to go through. Many times I found myself crying because so much was out of my control and I so want my girls to love each other or honestly, just tolerate each other, OK?

Flash forward to May and bonding began happening. In the morning it was Linley that Piper called out for and it was Linley she requested her breakfast from and it was Linley she chose to sit with her on the couch and watch movies with. Often she was looking for her "nini" and often she was attempting to go and do what her big sister was going and doing. I don't have to tell you how joyful those tears were from me at those sweet times.

Now we are here doing leukemia again and one of my biggest worries has been the effect this was going to have on the girls relationship. Remember please, we are treating Piper for a cure and a future...hopefully one filled with bedtime giggles, girly makeovers and someday maybe double dates with her big sister. This is why we have Linley up here with Piper and us each weekend. Yes it makes the day busier and no the girls don't always get along but Linley and Piper WILL love each other, dag nab it.

The proof is from these picture I snapped this weekend...

Saturday, August 27, 2011


Things are moving along quite smoothly.

Piper has completed two of the three types of chemo that she will be receiving this month. She still is getting her oral innovative therapy chemo each day and that is going well and will be a daily thing until she has received it for 28 that point she is going to have another lumbar aspirate to see if she is (please sweet Jesus) in remission again. Because all of her quickly growing cells, including any leukemia, are being wiped out, an infection is probable and thus it is easier to just have her stay here while being watched closely.

So what are we doing? You in this amazing yes, but boring also hospital? Well, I always joked before that Piper and I had a busy daily schedule of dining out (icky cafeteria), shopping (expensive gift shop), and visiting the aquarium (big ole fish tank). And usually our friend the ever clunky IV pole has followed us around while nipping at my ankles. Good times.

This time around we are still doing the whole dinner/shopping/touristy gig but we have new and exciting excursions to add. The library! The garden! The playground! The elevator! The beautiful water fountain we aren't supposed to stick sweet little girl toes in! Thankfully (and surprisingly) Piper is still eating and drinking just enough to keep her off the IV pole unless she is getting blood/platelets/other yummy things...which is a godsend because the girl still doesn't walk independently.

Cheerfully yes, but not independently.

The family went Wed to have our blood work taken to see if any of us are a match for Pipers BMT. Piper received a low dose of morphine on Thursday after her sedation chemo because of pain but thankfully no fever. The orthopedics people are visiting this week to check out her left ankle (again). CMV is still undetectable in her blood work. She still has her hair but we are noticing a few golden hairs at a time in our fingers while stroking her head...and that for me is possibly the most difficult thing this week.

There is an awful lot of Elmo going on in this room these days. A million thanks to everyone who sent pj's, though I swear that was not my intention while yucking it out at Target. Our family is feeling the strength of your prayers, encouragement, and thoughtful gifts and notes whether you are family, friend, or a stranger.

Thank you.

Wednesday, August 24, 2011

Still here. Still breathing...send wine.

Its taken me a minute to write because honestly I'm running out of words these days. There are only so many different ways to say "devastated"...and there are only so many emotions we are feeling at this time. For the most part the shock has worn off. We are still very much going "what the what???" but managing that pretty well in public.

I said before that the word relapse is much more difficult than the word "leukemia"...sadly, most of the families who face leukemia mentally prep ourselves for the possibility of relapse also. And while most of these families will be fine, those of us who are not walking away from the leukemia battle as quickly as desired will have to square our shoulders and muster on. Does it stink? Oh yes. But we've been here...we will do it again.

And that will be that.

Tomorrow Linley, Chad and I will all have blood work done to see if any of us are a match for Pipers bone marrow transplant. The results can take up to a month to get back so we want to get the ball rolling as quickly as possible. Please pray that one of us will be a fabulous donor and that the testing will be simple and as pain free as possible for Linley. (and Chad)

Piper has had 18 doses of chemo since last Thursday. Apparently she has no clue...her day is made up of going for walks with her "push" (baby doll stroller) with her blue latex gloves on and her little toy puppy attached to a leash she pulls with her. She loves to visit the fish and Mrs Zoe in the library. A trip on the elevator may take forever to get on and off of, but she will giggle with glee. Having done cancer with an infant, I must say its easier with a two year old...did I really say something is easier with a two year old? Psh.

Wed and Thursday nights are my nights at home. I plan to get a haircut. I plan to make Linley lunch with the daily love note inside. I plan to sit on my balcony and drink chai and read a little more of the book 1000 Gifts. I plan to walk barefoot. I plan to sleep on my right side. I plan to stay as busy as I can and not call Chad every hour to check on him and Piper.

I don't plan to dwell on the "whys" or "hows" or "what ifs" because frankly, that steals from my living with what I have now...two sweet girls, a husband and a God who gave this all to me. I'm learning quickly that a blessing isn't always a perfect gift or the answer to something you may think you want. Sometimes its just the knowledge that you're still here and still breathing despite having the wind knocked out of your sails.

Praise God.

Friday, August 19, 2011

Day 4.

Day 4. Four whole days that we have known that Piper has relapsed. I know we were not certain until Wednesday but frankly, this mom knew. I knew the minute the nurses wouldnt talk with me about her bloodwork while at the ER in Athens. I knew the minute Chad spoke with Dr George and I sure as heck knew when my heart was aching as Chad and I drove the hour to the hospital with Piper sleeping soundly in the back seat.

For four days Ive woken with that sense of immense dread that only comes with having had your world rocked. I know from experience that this WILL get easier and I eagerly await that time.

As for now Piper is tolertating chemo well. She is having a fever about every 5 hours combined with mottled skin, fast heart rate and high blood pressure but thankfully once she is given tylenol she quickly goes back to normal. On Thursday she had 3 fainting episodes that were related to being anemic due to low hemologlobin which was quickly remedied with a blood transfusion. Piper is still eating well and keeping us very busy running around the unit. Without the Iv pole she would look like the picture of health...something I forget she is not.

Yesterday Dr Woods spoke with us about Pipers lumbar aspirate...she has leukemia cells in her spinal cord. (of 200 viewed, the pathologist saw 3 that looked leukemic) While this is definitely not what we wanted to hear, he felt like it would not be changing anything treatment wise. Her spleen and liver are also enlarged which is symtomatic with Leukemia...he expected them to be back to normal size within the next 2 weeks as the leukemia in her little body diminishes with all the chemo.

At this moment both girls are a arms reach away from me in the bed, giggling. Piper is loving having her "dissy" here and Linley is loving the role of being that beloved "dissy". Bonding is happening and it is a beautiful, while bittersweet, thing to see.

Despite high doses of chemo being chugged into my sweet Piper, despite our entire world being disrupted, despite the fact that I really miss having bare all fades when the four of us are together here in this room. Its the way it should be.

Target makes me puke.

Chad and I came home last night to attempt to explain this to Linley. Now that Linley is in 1st grade she "gets" this alot more...shes fearful not only of loosing her sister but of being left behind when Chad and I are with Piper. Thankfully Linley took the news as well as she could and is willing to be tested to see if her bone marrow is a match for Piper...please pray that it is.

While Chad was in class and in between calls to my mom to check up on her with Piper I ran to Target to grab things that I was needing for this hell of a hospital stay plus the basic things needed here at home. Usually Target is my happy place and today I decided to put aside my (snotty I am sure) oddities that I have with clothing with characters on them and look for some pjs for Piper with Elmo on them. My girl loves her some Elmo. So I looked and looked and only found a pair in a 3t...then I went over to the singing cards and looked for Elmo something over there but the only Elmo card I found was a "welcome to preschool" card.

I could feel the bile rising in the back of my throat. I made it out the front door and onto the sidewalk before throwing up what little I have eaten lately. I dont know if Piper will ever get to wear a 3t or go to preschool and the nausea and desperation I felt at that moment was simply to much to bear. I cant lose this child.

Now I have spent the day doing some crying, some cleaning and some sitting with a friend who came to help me fold mountains of laundry. In a few minutes I have to pick up my beloved Linley and finish packing and head back into the hospital. Pipers chemo has begun and she is missing her mommy. From this moment on, it will be Chad and I playing an intrecate game of Tag to enable that Linleys needs are met as well as Pipers.

We are moving from shocked mode to survival mode...though the emotions that we are feeling are well beyond what those two little words can ever portray.

Wednesday, August 17, 2011


Piper has relapsed. Her leukemia has returned. Tomorrow at 2:00pm she will be sedated and have a lumbar aspirate to gather more information. They will also begin her on her first dose of chemo, once again.

I cannot tell you how devestated we are. How broken my heart feels and how heavy my spirit probably would never understand. This was totally unexpected, Piper has been nothing but the picture of health and happiness. Our family was beginning to get a grasp on "normal" living and now this...

Basically we have 2 choices. We either fight this, given little chance that she will be cured or we stop fighting, knowing that this will take her little life. In chosing to continue the battle Piper will receive about a months worth of new chemo intended to get her body back into remission. If that works, they will follow with a second round of heavy duty chemo. And if she is still in remission at that point we will be taken to Egleston where Piper will have a Bone Marrow Transplant, hopfully with one of us as her donor. At that point if all the steps we have taken have kept her in remission and the BMT is considered a success she will have a 20% survival rate.

Obviously this decision is not a difficult one as Chad and I feel strongly that not fighting is giving up and that is not our style. Beginning tomorrow we start all over. Piper will lose the beautiful hair she has, Linley will work her way through 1st grade without her family at her side and Chad has to reevaluate all his current plans for school and work. Again, we are totally devastated.

I cannot see the future. I have no idea what is to come, not only for Piper but for all of us. If you want to know the truth I am scared witless and I am spending the day sobbing uncontrolably. I wanted, no needed, our little family to begin to mend and to be able to look at this phase of life as a season instead of our normal. Facing a relapse is even more frightening that the initial diagnosis. I now know what this does to our family, finances and is ugly.

While I have no idea what happens in the future, I still stand firm on the knowledge that God is sovereign and that He has a plan. I fear the prayers I am sending up are not filled with faith but rather with pleading but I rejoice that He knows my heart, my girls and my life. At this moment, sobbing at the computer with strangers around I feel much like a tree that has been beaten by the weather. I may look to be bent over, I may be weathered to a indescript gray but I am still rooted in the soil that give me sustanence.

Of this I am certain, God is still good.

Tuesday, August 16, 2011

At the hospital with piper. Her bloodwork came back with suspicious cells and they are assuming a relapse. Please pray that this is not. Relapse is even scarier than the initial diagnosis. They are rerunning bloodwork and other tests and we should have some answers tomorrow.

I know God is bigger than all of this, I just wish we weren't tested so much.

Friday, August 12, 2011

Im a new fan of peer pressure.

Not in the whole Toddler and Tiaras sort of way, or heaven forbid that ridiculous show I watched reruns of at midnight called Dance Moms. No way Jose...I can not imagine pressuring my daughters in such superficial ways.

But for walking? For my 2 year old? I had to do a little compromising. I had to look at her little sweet face and tell her "Gunner can do it, can you?". Seriously though, she is two years old and her legs are strong, its her balance we are working on. And in the last 48 hours she has begun to let go of her stroller/couch/wall and balance herself while I count and cheer her on. And today I was watching my nephew Gunner while Piper and I were working on her balancing and she fought me, as she does everything, until I said "Gunner can do it, can you?".

She did it. I counted to 14 while she did it then she slowly dropped down and continued to smile proudly.

Peer pressure and petty girls? Negative.
Peer pressure and balancing solo? Yes please.

Wednesday, August 10, 2011

1st grade for Linley

When Linley was born I quit my full time nanny job and chose to stay home with her. I never desired to have a career and I was fine with "just" being a stay at home mom. Since her birth I have held down a few part time jobs usually with her in tow. At times she would spend the day with her Nana, but I still held the title of stay at home mom in my eyes. And I liked it like that. I loved being with my Linley...she was then and is now, a joy to be around.

Maybe thats why sending her off to school each morning has been tricky for me at times. I miss her when she is gone. This year Linley is attending a Christian school and I have to say that knowing that her teachers are trusting God makes me trust them a little easier. We chose to change her schooling because I firmly believe that each child has specific needs. And what works for one child,one year may not work well for another child, another year. Linley always seemed like a fish out of water in the local public school. Here she is known by name, she has already been noticed as a strong reader and she is gaining confidence within her class and with her homework. While it is a financial commitment, knowing that they are supporting Linley as a unique, special and God given gift, is worth every penny. And as an added blessing, she has classmates whose mothers have been supporting our family through our mutual church and bible study as well as her teachers aid being the mother of a leukemia survivor.

Here she is in her sweet uniform. I know, more glittery high top sneakers and polka dots for her until after 3:00pm. But seriously, how can I mind when this is how she pulls a uniform off? Beautiful girl. May God bless you this year with friends, confidence and smarts, my sweet firstborn. I love you so.

Monday, August 8, 2011

facebook stinks

Yesterday I hated Facebook. To be true, I often hate it but find it to be a integral part of maintaining friendships with people I have met all over the I am nosy by nature.

But yesterday I was annoyed, unbalanced and overwhelmed with the differences in each new status that popped up. At one point I had a father asking for prayers for his sons lumbar puncture, that no cancer would be evident. And directly below that was a woman complaining about still being pregnant with a healthy child. Another woman was posting pictures of her beautiful daughter who recently was born without her left arm. And below that, someone complaining about having to work that night. And I know that all of these people are wonderful but truly, truly, truly I am baffled at what people get in a snit over.

I also had to leave a mothers group because I couldn't hear anymore about teething troubles or what to do when someones 5 month old was still not sleeping though the night. My tolerance and grace well has gone dry although I am as usual, the one who most needs both of those things. Instead I am totally dry and I am at my wits end these days reminding myself to appreciate my own two daughters to focus on insipid complaints from people who are not able to enjoy the blessings they have.

The father who waited to hear results from his sons lumbar puncture has now been notified that the cancer is within the spinal fluid as well as in his young sons liver. At this point he will be going on his Make A Wish and his family will be left to enjoy his last days with him. Can you imagine that?

And the mom will have her healthy child and another mom is loving her beautifully different daughter and the other person will be paying their rent with the job they don't appreciate. And I will be attempting to push my immense fear at ending Pipers treatment into a dark corner of my brain while appreciating how healthy and happy my daughters are today.

That's the only gift I can give you Story family, I can appreciate and love on my girls the way you have shown me to. To complain about anything right now is wrong. And this goes for you too, readers. If you are finding your little life too hard at the moment, know that you are blessed enough to even have the simple mental capacity to do so. Fathers, spouses, daughters, lovers, friends and neighbors have breaking hearts today and would do anything to have your frustrations and stresses.

Thursday, August 4, 2011

clinic visit 8/04

I have much to say but not really much talent in wording things well. I also stutter should you ever know me in the flesh...its especially awesome when I get on a tirade. (of course, this is crazy rare) I imagine then, that this will be a post with a plethora of "verbal diarrhea" as I call my rantings, raving and/or rabbit trails. Lets see how well you can follow along.

Today Piper had her 2 week checkup since being discharged from the hospital due to that amazingly sneaky virus of which we have no name. She is doing wonderfully. Eating, attempting to get around and basically being the silly two year old that she is. When Piper was admitted, they stopped her chemo both the daily 6mp and the weekly Methotrexate in an attempt to get her counts back in the typical Maintenance range. Today her counts looked great...still beautifully normal. And I thought that they would restart both the chemos I mentioned above as well as her monthly Vincristine. But nope.

Chad said that the final decision will be made tomorrow but at this moment they are planning to stop her treatment. Piper is due to have 6 more weeks of chemo before ending her two years of treatment in mid-September. This honestly freaks me out. I know the steroids are doing a number on her bones, I know her immune system is shot and I know ending chemo would do wonders for her...but I was not prepared for this. I wanted Piper to receive the max amount of chemo within her two years, not end prematurely.

When Chad relayed his conversation with Nurse Lois and watched me put on my angry eyes, he only laughed and said that Lois was prepared to hear from me tomorrow. I don't want to be " that mom" but thankfully these people are accustomed to me and my questions and opinions. They still look forward to see Piper and I walk in the door so Ive not bothered anyone too much yet.

So blast it all they want to be done. No hoopla, not big to-do, just an end. The concern for an infection, virus or bacteria now apparently outweighs the concern for leukemia. I'm not sure if I should be comforted by this or up in arms. Being the persevering woman that I am, I see Leukemia as a very targeted and specific infection, virus or bacteria are possibilities and those my friends, are easy to mentally side step. I don't want to stop this fight yet and I don't ever, every want to see this beast return and I cannot help but worry the two could easily go hand in hand.

Tomorrow I will be making a call or two. I am praying for peace and I am praying that they are receptive to my concerns. I am also praying to remember just how far we have come and that God reminds me of this when I find myself clinging to the ceiling.

(I knew I should have gotten that medical degree because then I could be mom AND the doctor and thus, the boss...more chemo for all! fight on little cells, fight on!)