Makes me smile.

My Linley makes me smile.

There is a joy and simplicity about her little self that makes me smile a million times a day. She is smart. She is observant. She is compassionate. She continues to accept the mess that our life so often is and she is a stronger little lady because of it.

For two years she has thrust to the sidelines at a moments notice. She adores the times that I am able to squeeze quality time into and she abhors being without her sister at night. Because her new school is showering her with attention, prayer and encouragement she has been thriving regardless of our presence. I'm not sure how she maintains her sweet optimism but I am so very happy that she does...it soothes this soul.

Yet another thing my firstborn does a lot of these days, in the midst of making me smile, is practice her handwriting. And by practice her handwriting I mean she is writing on anything that will stay still long enough. (including on her bicep today at school but that's another story for another day) Linley doodles on this, Linley doodles on that, Linley writes me a note here, there and everywhere.

I love that.

Apart from having little notes spilling out of my purse at a moments notice, she has now begun writing notes to the general public. No door, wall or surface is safe from her and her sweet thoughts.

This just helps me to smile just a little more at each turn in my home.




(


(***the middle note reads like this:

Bunk bed rules
Not allowed under 6, but six and up you can

If you weigh more than 100 pounds you can

Linley is six.

If you are six you can come and if you are over six that is okay)


Now see if you can envision my girl composing little notes and not smile like I do.

Tomorrow.

Tomorrow is Pipers much anticipated, long awaited bone marrow aspirate. Supposedly this will be taking place at 11:00am but the nurse/friend let it slip that there was actually a question mark followed by the word "tentatively" on the schedule sheet.

As my Piper would say, "fabaduss" and waiting for hours with a two year old who cannot eat nor drink is indeed as fabulous as you are imagining.

When Piper is sedated tomorrow at 11:00am ( or 3:35 or 6pm or...whenever) she will have marrow taken out to have examined intensely to see if there is any leukemia evident. She will also have methotrexate, arac and hydrocortisone administered to her spine to continue to keep the beast from invading. We will hear results within a day or two and that will give the doctors the information they need to make a plan. Because Pipers anc is now up to 150 and her wbc is up to 455 there is a chance that we will be going home within the week. So we wait...does anyone else see a pattern?


The powers that be over at the Bone Marrow Registry have found 11 potential matches for Piper. My heart leaps when I think of this...The knowledge that somewhere out there is someone who can quite possibly be prepping to literally save my daughters life is mind boggling. I can only hope. pray. wish big big big things. And wait...of course.

Last Saturday I met with 500 of my dearest friends from around the state. It was a luncheon intended to celebrate the mothers of the children in the area who are affected by various cancers. I was able to hug the neck of a mommy whom I love dearly...she lost her sweet son the day before Piper relapsed. I was also able to sit next to another favorite lady whose own daughter is thriving off of treatment. The extremes at which childhood cancer can range is amazing...and yet, I rarely meet a woman who is not able to do whatever it is that is thrust upon them.

Childhood cancer be damned but I am consoled by this motley camaraderie that it has made of women who really, just love our children and will do what it takes to raise them.

update 9/21

At the mostly polite, definitely insistent encouragement of so many of y'all, I am checking in. Miss Piper has fallen asleep tonight before 10:00 and I have completed reading my issue of People magazine so all my procrastination techniques have expired. Not that I don't have things to update but rather I have the uncontrollable desire to begin raging/tirade/complaining about on here.

I wont, but I do that sometimes these days.

So Piper is well. She received 52 doses of chemo within the 28 days of this round. Amazingly she all but sailed through it without any major issues. A few low grade fevers were quickly abated with Tylenol and nothing has grown on any cultures done. Her CMV continues to lie dormant. Physical, occupational and speech therapies typically go well and she is using her new walker like a pro. Her hair began the falling out process but she is rocking the baby chick look. Pipers appetite vanished once the mouth sores began but she is slowly beginning to trust food again. Lortab has been a friend at times as she just generally felt bad.

Oh and she got 2 of her two year molars.

Oh yes...while on Lortab.

So, that was nice.



As some of you know, Chad, Linley and I's HLA typing came back and none of us are a compatible match for Piper. I'm not sure whether to feel relieved or despondent. Frankly, with the high rate of relapse with Piper Im not sure if I wanted this to be on Linleys sweet six year old shoulders anyways. Apparently there is no evidence saying that a related donor lessens the chance of relapse but a related donor does make things less complicated, both medically and time wise. At this time we are awaiting results from the bone and cord blood banks...our oncologist feels confident that we will be able to find multiple donors for Piper. Many people have asked to donate to Piper and unfortunately it doesn't work that way...not that I am entirely clear on how it works but go to www.bethematch.com and learn more.


We are still at the hospital because it is taking a ridiculous amount of time to have her counts rise to a level that is first, high enough to do the lumbar aspirate and see if she is back in remission and two, high enough to safely go home. Pipers ANC is still hanging out between 10 and 30. A normal child's ANC is between 2500 and 6000.

(Oh that Piper, shes always trying to get a little more attention.)

Once her ANC reaches at least 300 she will have her lumbar aspirate and we will see if those 28 days did the job. Then, hopefully we will be able to take her home for a few days and the Doctors both here and at Egleston will be able to give us a road map or a plan of attack, if you will.

And I will.

I am weary of this phase. "Attack" sounds good. "Attack" also sounds promising. I'm ready to get moving and get attacking and hopefully, prayerfully someday we will look back at this and rejoice we had the strength to put on our fighting gear and give it all we could for our sweet girl.

This strength is not ours but given to us from God...I cannot imagine going through this without the raw ache in my soul being filled with His hope and promise. His goodness is shown in the giggle of Piper at bedtime, in the presence of a Starbucks in the hospital lobby, the sweet smell of my 10 week old nephew sleeping on my chest while we reside in the same room as we did when Piper was first diagnosed at ten weeks old. His goodness did not end when my life began to feel a struggle, in fact it truly began then.

In this struggle I have learned to love, trust and rejoice.

That is a goodness I will never see anywhere else apart from in Gods grip.

A few things...

All is well here. Piper is just amazing and her strength while going through the amounts of chemo she has endured is simply amazing. She is neutropenic, meaning her immune system is practically non existent. While this is the goal while fighting leukemia it puts her at a severe risk of infections. Thankfully she is still the hardy little Piper we all know and love...blowing kisses to the nurses as she pushes her little stroller around the floor. She has had a surprisingly low amount of side effects and we are so thankful for that. Unfortunately in order to kill the horrible, no good, very bad leukemia cells Piper will first have to be very sick (chemo first, then raditation and then transplant and those effects) before prayerfully she beats this monster.

So far so good.

And now...

Did you know that September is Childhood Cancer Awareness month? I didnt either until September of 2009 when we first heard the words "leukemia" and "Piper" used in the same sentence. Ever since that month I have had a daily reminder that cancer is not only for the adults...it effects children, infants and teens as well.

And here are the ugly facts:

-All child cancers combined receive 3% of the American Cancer Society's research funds.

-In the last 20 years, only 2 drugs were developed for child cancers.

-Each school day, 46 children are diagnosed with cancer

-Each day, 7 children DIE from cancer

-One in 320 children will develop cancer by age 20

-Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined

-Cancer treatment can cause serious side effects that may last a lifetime

-Relapsed Acute Lymphoblastic Leukemia carries a poor prognosis, 10%-50% survival

-Leukemia is the most common form of cancer in children

-Every year since 2003 federal funding for childhood cancer research has been CUT.

While these facts are indeed ugly you know our family is Hopeful. Not only for a Cure but for a Cure within our lifetime. In order to achieve this goal we have to work together. There is an amazing organization here in Atlanta that does just that...and this month in response to our beautiful children in this area who are fighting or once fought, they chose a few faces to honor. And my Piper was chosen this year. It is our goal to raise $1000 to go towards research and hope and a bright future. Anyone who is interested in seeing the amazing fighters and donating money towards such an very good cause in honor of my Piper can find the link here:

http://www.firstgiving.com/fundraiser/piperneedham/2011curekids

And please also check out curechildhoodcancer.org to see more of what CURE is doing for so many children and their families.

As Piper nears her 24th month of chemotherapy I am reminded of the beginning of this journey when two years of treatment seemed so very, very,very far away. Now we begin again with less optimism but a huge dose of Hope and I am still in awe of those who have fought the long fight. Want to have a small glimpse of the hell and heaven that the cancer life brings?

Check out chicagonow.com/mary-tyler-mom

This mom fought with her sweet daughter for almost 3 years and this month in honor of Childhood Cancer Awareness month she is doing a daily post with details of each of the thirty one months her Donna fought. Today is the 4th of September and it is the forth month of Donna's fight. Read and follow it...it is eloquently raw.

Tomorrow I will post more about Piper and life as we now know it. Tonight I am showing you a snippet of what childhood cancer means and how amazing are the fighters and supporters both.

You probably wont be a fighter but you should be a supporter.