Wednesday, September 30, 2009

Sept 30

Got IV pole? Check.
Got many, many spit rags? Check.
Got a "won't-take-it-but-just-in-case-she-will" paci? Check.
Got a bottle of hand sanitizer in case someone gets out of wagon? Check.
Got a big sister who barely fits? Check.
And this is how we roll in the Aflac Cancer Unit here in Atlanta...
Obviously we get alot of attention on our daily jaunts and not for all the paraphenalia. Seriously, I make beautiful girls dont I?

Tuesday, September 29, 2009

Tuesday 9/29

Chad and I are having a little bit of a glimpse into parenting a pre-teen. Seriously, Piper is happy, whiny, screaming, smiling all in 30 minutes...the Drs said she was going to get "moody" but wow!
Although as I write this she is sound asleep across the room. She is refusing to sleep anywhere but in my arms and I have resorted to what I always said only slacker moms did (sorry ya'll)...putting her to sleep with a bottle in her mouth. Its hard though. With my oldest she would cry a bit when she wasnt happy but eventually went of to the Land of Nod and has developed into a happy contented 4 year old. Piper though, I know she doesnt feel well and I cant raise her the same way...thus a little bit of spoiling. Hopefully no bottle cavaties like us moms are taught to fear so much.
Chemo and steroid treatment is still chugging along. Piper is still doing well...not much has changed in the last few days but I was told a few times that I wasnt keeping you guys up to date enough. And you all have been so wonderful to us with all the cards, calls, meals and prayer.
So the update is that Piper is basically 13 years old and I am now adding bottle cavities to the things I am worried that her little body will get. Kidding...the update is that God is good. Cancer stinks and God is still good.

Oh and I am trying to download some new pictures of my beautiful girls but the computer is being funky...dont worry though, you will get some great ones someday!

Friday, September 25, 2009

Sept 25 pm

I am back after a little "rest" time with Chad and Linley...although my eldest thought that 7:15am was a reasonable time to waken the world. She must not have gotten the memo that Mommy and Daddy are oh so tired. At least she doesnt seem to have an idea how frightening and tiring all of this is. We had a great time with her yesterday! I have been a stay at home mom for all of her life and yet I dont think I have ever enjoyed a day with her so much. Everything seems so much more precious. I was able to be a substitute teacher for her class, which she thought was oh so cool. And then she and I and Chad went out for lunch and ran some errands then ended up at the soccer fields while Daddy worked and Linley and I played, walked and explored. A good time was had by all.
When I got back to the hospital this morning Piper was happy and well cared for. My mom just has a wonderful knack for caring for children...whether they are 11 weeks old or 28 years old. We spent the day here playing with Linley (thank you to the Quint family and Aunt Paula for some amazing crafts for her!) and kissing on Piper...every once in a while we would swith it up a bit and kiss on Linley and play with Piper.
The nurse put a catheter in Piper until Monday. The new meds she began today make urine very acidic and can easily cause diaper rash. This gives us a nice little break from the 10lb wet diapers she has been having! She wasnt too fazed by it and has slept though the chemo this is all through the IV but still impressive. Piper is eating like much as 30 oz in a 24 hr period....shes going to be my chunky monkey for sure.
We got a visit from the nurse practioner named Lois. She told us how impressed she was with Pipers progress and demeanor. Apparently she is doing just as desired and better than expected. We did get the results back about the MLL gene and Pipers are re-arranged...but when Lois told me this and my face fell she rushed to encourage me. (And if I have said it once I have said it a thousand times...these Drs and Nurses are not big on fancy encouragement, just alot of statistics and such.) She said that Pipers wonderful health is more promising than anything right now. So keep praying that her little body stays free from infection and that chemo can continue to do the work it is intended.
Some people have asked about visiting and I wanted to say that I am totally fine with that. Of course, you cannot be sick and no children are allowed...otherwise it would be great. Just let us know before you come down ok?

Wednesday, September 23, 2009

Tuesday 9/22

I first have to say how blessed I am. Maybe I am not going through this whole process the right way, but facts are facts and I still have 2 beautiful girls to love on. On top of my girls and my best friend/lover I have friends and family and a support system that rivals the best out there...I have read every note, email and prayer sent to us. Each word of encouragement has touched me even if I am not responding to anyone right now...thank you so much.
Pipers 5th day of steroid treatments went the same as the rest. She is managing well and beginning to learn to laugh (amazing timing the kiddo has). Her white blood cell count has dropped significantly, which while not a "good" thing because it wipes out her immune system almost completely, it is the goal. Because of her extremely susceptible immune system she has been moved to another room within the Aflac inpatient unit. Her new room has a special air flow system that rotates the good air instead of allowing compromised air from outside. We are also keeping an eye on a small diaper rash spot on her little hiney...any infection is frightening.
The steroids have her eating alot more so we are getting up in the middle of the night more often...and I have never been so happy to hear a newborns cry.
Linley is doing well thanks to a bunch of amazing women who have been picking her up from preschool and keeping her happy and occupied. This Thursday her preschool class is celebrating Johnny Appleseeds birthday and although it will be difficult, I am planning to leave my mom and dad to care for Piper while I take part in the party at her school and spend the afternoon and night with Linley and Chad. I am certain that this will be scary for me, (I havent left this hospital since Piper was admitted last wed.), but it is important to not forget that I am also a mommy to a wonderful 4 year old...and she needs me as well.

Monday, September 21, 2009

People have asked where they can send stuff to us...we should be at Scottish Rite for the next month and that address is:

Childrens Hospital of Atlanta
1001 Johnson Ferry Rd. NE
Atlanta Ga 30342

Aflac Unit- room 197
C/0 Needham family

Thanks to all of you who have sent flowers, notes and balloons...Piper especially loves the balloons. :)

"gold star"

Today we are attempting to get a routine going on. All the out of town support has had to leave and Linley is back at her preschool. My mom is working out a system of childcare for Linley in the afternoons after preschool that would enable my mom to be here at the hospital and yet would have either my mom, Chad or myself home with her for dinner, bedtime and that much needed attention. We are so glad that the hospital welcomes siblings in good health...Linley and I were able to have a little time one on one yesterday as we went exploring the elevators, cafeteria and multiple fountains outside. To say that I miss her is a gross misunderstatement.
Piper is as usual, acting grand. I shudder to think that she is acting so normal I would never been even raising an eyebrow or taking her to the doctor...Thank you Lord for the way you lead parenting and doctors intuition. Next week her chemo will be alot more intensive and we can expect the days and nights to be a lot more demanding. For now we are receiving each and every one of her coos, snuggles and smiles as a promise of more to come.
Chad went to work last night. He has taken time off from his full time job to be here at the hospital but still will be working 2 or 3 nights a week at his part time job (soccer referee). Thankfully his mom is a self confessed night owl and spent the evening here with me and Piper.
Last night when the doctor came in to check on Piper he told us her charts were the best on the floor for the day and that she gets a "gold star". This doctor is very good at what he does but he is very much a realist, which means he gives us sad statistics and pulls us down emotionally...But the man may not have realized that he just gave us encouragement!!! And we take it in any form from anyone at any time these days.

Sunday, September 20, 2009

How did you know Piper had Leukemia?

We have had alot of people ask us how we were able to know something was wrong with Piper. And I know that this blog is read by many people and many of you do not believe in God but I do and I know that His hand is on my little girl...let me share the first of many "coincidences" (as the medical world insist on calling them)

Piper was born healthy on 7/7/09. She was and is beautiful, alert and chatty. I am not an alarmist parent and I am constantly going with my girls...Wal-mart, the park, church...We like to run around and Piper was proving to be just as flexible as her big sister. Its been a fun last 3 months for sure.
So when Piper developed a fever last Monday I wasnt too worried but combined with the diahrrea she had had for a day or so and the few sleepless nights she was having, I was just tired...and ready to have the Dr give her something to help her out. We went in and Dr. Baker took a look at her and said he thought it was just a stomach bug and for us to come back in if it were to get worse. Then he seemed to rethink it and said that he was going to send us to Athens Regional Hospital to do blood work to rule out the rotovirus. So after a few hours at the hospital and some blood work it was told to us that Pipers platelets were low so they kept us overnight to do more tests in the morning. Dr Baker gave the hospital doctors a few things to test for and he threw the leukemia test in as an afterthought. As we all know the leukemia test came back positve and we were all stunned, even Dr Baker who by his own addmittance did not think that was even a possibility.
Since arriving at Scottish Rite, Piper has had no fever what so ever. Her diahrrea went away as well and she has been in wonderful shape. The cold that she had was nothing to do with her diagnosis...just a "coincidence" as the Drs say. The doctors are surprised because apparently most of the young children who come in with leukemia already have an infection or sickness which make treating the leukemia even more difficult.
Piper could have gone weeks without being diagnosed. She would have gotten sicker and sicker before we thought her sickness was anything more than a common cold or something. I believe that God used Dr Baker and I am so glad that Chad and I chose to continue bringing our girls to him even after moving an hour away.

Saturday, September 19, 2009

Today has been fairly slow. It is Day 2 of Chemotherapy and Piper is not showing any signs of pain...she is very alert and loves all the balloons and new faces smiling at her. Pipers "lead" (her IV through her chest) became a little clogged and they were easily able to unclog it and draw blood out. Linley has shown up now and is playing games with all the guest...she doesnt seem bothered by any of this...that kid is no stranger to needles or blood.
This is a picture of Piper hanging out in her throne...or bed.
I used to love the evenings. The sweet time of dinner, baths, stories, kisses and bedtimes...and then that blessed peace and quiet. In the last few weeks I would have Linley settled in bed and give Piper her bottle and get her to bed and take my OCD self around the house picking up clutter and washing dishes and when I felt like my home was in order I would look around and find my other half and curl up next to him and just calm. be blessed. be happy. Never knowing that all I was taking for granted was about to be rocked like I could never imagine.
I dont like evenings anymore. I miss my Linley and her barrage of questions as I am attempting to tuck her in. I miss giving Piper her bottle and hearing her hum herself to sleep. I miss curling up behind the love of my life in our queen size bed. And I miss when the last thought before sleep was..."maybe those girls will let me sleep in".

Here at the hospital so much is unknown. When I awaken in the middle of the night I only have half of my heart in the room...I have to trust that Linley isnt calling out for her mommy in her bed 50 miles away. I look at Piper sleeping so sweetly and try not to think past the moment I am standing in. And I hesitate to fall asleep because the minutes as I wake up are so very painful...every thing comes crashing down on me all over again. I pray that I can make it back to those evenings I miss so much. Heck, right now I am praying that I make it until this evening.

Friday, September 18, 2009

Friday Evening (9/18)

This has been a long day and thanks for all the prayers, messages and encouragement.
Her surgery went well and she is showing herself to be quite the trooper already. After a bit of sleeping and a little snack she is smiling and cooing. The surgeon was not able to get a good sample of bone marrow so she drew a blood sample to be tested instead. This will take the same 2 weeks to have results. Without getting lingo-y, we are hoping for a good chromosome (MLL) to show up in her blood test and not a mutated chromosome which, according to doctors, makes the leukemia harder to treat. It is very rare for infants under 3 months old to have their chromosomes not be mutated so we are hoping for a real miracle.
The good news is that there were no leukemia cells in her central nervous system...This is apparently one of the 2 places that are most difficult to eradicate. The other area is the testicles and we are certain there will be none there either. :)
We were given our "road map" today, which is the treatment plan. It has Piper in almost 5 weeks of chemotherapy beginning from fairly mild steroids to some heavy duty stuff later on. After her initital month of chemo, she will be coming back here to Scottish Rite weekly for testing and every few months for chemo for the next 2 years. The first 6 months are considered more critical and infection will be our biggest concern.
We are asking people specifically to pray for "no mutation of the MLL gene" sets the stage to know what statistics will be....
It is 630am on Friday. Piper is scheduled to have surgery at 1030am...she will be having a permanant IV put into her chest, bone marrow taken out to be tested and a spinal tap. The bone marrow contains the information that will let the Dr. know whether Pipers outlook is postive or grim. ...Please pray that the marrow contains what it needs to do for Piper...I dont have time to give details but it will be a little more difficult for Pipers marrow to contain this because of her age.

Here we go...

Welcome to my blog. I am going to cry, scream, laugh, complain, sob and question...and its ok because its my blog and its my little girl who has Leukemia. Yes, Leukemia...that disease that everyone hears but never envisions it happening to their own loved ones. Somehow my husband and oldest daughter will help me stand upright and my sweet littlest will keep me on my knees. I am ok with that today and tomorrow I will probably not be. All of the people here tell me thats perfectly normal.
Because it is midnight I am not going to write anything more. Also, because I am mentally spent and this day has gotten worse and worse. I will attempt to keep you all updated if you promise to pray. And I mean on your knees and sobbing, people...because thats the only way to feel how big this is and how big our God will be.