Monday, January 31, 2011

The Good, the Bad and the Ugly.

Yep, still here.

Still hanging out.

Still not quite sure what the hay-day we are dealing with.

Still wondering if I should cry or sleep or pray.

Still know that praying is the only option that will really help Piper out.

What we have now is some Good, some Bad and some Ugly...that's a fancy way of saying we got a whole lot going on.

The good is that Pipers ANC has risen to 1340, which gives her a little more umph from which to fight from. She is also super happy, playful and hungry. None of her blood cultures are growing anything. We have been taken off of Isolation so we have been jaunting around the hospital today and that is really, really nice.

The bad is that she still has some sweet swollen ankles. She was given a blood transfusion today and something called "lasix" (sp) that is a diuretic to hopefully drain off some of this fluid that she is retaining. She also is continuing to have fevers which while manageable with Tylenol, are not explainable. Pipers oxygen is also low so she is having to have it constantly streaming into her face. This is a lot going on at once and because of the sheer perplexity of it all we have the Ugly...

Sometime this week the doctors around here want Piper to have a bone marrow aspirate done to check for relapse. Her blood work looks beautifully normal but still with everything sort of going to pot and no explanation, they want to be able to rule a relapse out.

Of course, I do too. What I really want is some answers and subsequently some relief...for Piper and for the whole family. Ultimately I want that sweet peace that is mine for the taking if I just stop moping around and ask for it...Thank you Lord for that.

Saturday, January 29, 2011

Day 10


I am really, really, really bad about all this updating stuff. And you were all so good to pray that scary little something or other out of my sweet Pipers hip...thank you.

Like Chad said on Thursday night, I came down with some sort of funk of which Piper could not be around so my mom took over a night and I got to hang out with my favorite 5 year old ever. Apparently Linley and I had the "best day ever" because I was home and able to visit her class and she misses calling me mommy...melt my heart Fancy Face, just melt it away.

And so, here is the low down on all things Piper:

Pipers CMV levels came back and they have dropped from 5 million to 500,000 in only a week which is very good. She apparently is experiencing re feeding syndrome, a rare situation that affects children who have not consumed enough calories in the recent months and have a hard time readjusting to digesting their food. That combined with dealing with the CMV (which targets intestines) has made for some serious diarrhea. In an effort to allow her body to rest, they began her on TPN which is nutrients that go into her port and do not need to be digested but still help nourish her little body. She is still drinking some Pediasure and snacking and receiving a very slow drip on NG feeds overnight to gradually get her body to learn to digest.

She has begun spiking fevers but none of the cultures taken have grown anything yet. Around the same time she began to have decreased oxygen and subsequently a rapid heart rate. This is only happening when she sleeps so she is only required to have the oxygen mask at night. She has received a blood transfusion and a platelet transfusion in the last 48 hrs. Pipers UTI has cleared up totally. She has gone from 5.7 kilos at admission to 6.77 today...some of which is fluids but not all. There was some concern that she was taking in too much fluids and not ridding her little body of them so a chest XRAY was taken to see if there was any fluid in her lungs...and there is not. Somehow though she has some sweetly swollen ankles and feet.

Lets see. She was allowed to leave the room tonight for the first time in 10 days. Hopefully this week she will be getting some physical therapy to add to her occupational therapy. Her little legs are all but useless from being unused, not only the last 10 days here but the gradual decline we were seeing at home as well. Pipers ANC is still rock bottom but today her blood work showed neutrophils, which indicate that her blood counts are finally on the rise. Amazingly, today was the first time I have seen her laugh and play since at least October. She is a little puffy, she has beautiful bed head but she was sitting up on her own and playing and being silly and snacking and I am beginning to hope that perhaps we are turning a corner...perhaps.

A lot of this is very hard to see, especially as she is dealing with so many different issues, some which coincide and some which we have no idea what is causing them. Its a little overwhelming but I am confident that she is in good hands, both with her nurses and her God. One of my biggest concerns at this moment is that the doctors made the unanimous decision to hold Pipers chemo for a week or so in order to allow her body to heal. This is frightening to me as that beast leukemia is a stealthy one and I pray that irregardless of not receiving the chemo, that somehow it still continues to die.die.die.

And until these issues begin to be answered we are settling into room 194...although I did put in for a room change because there are about 14 male workers outside showing off a little too much crack for this G rated hospital room and the blinds to the hall do not work, making me wonder at times if the rest of Aflac have up and left myself and Piper alone. Isolation is for the birds but I believe that I have stated that one before. And probably will again.

Thank you to everyone who has blessed us with meals, childcare, visits, money, cards, coffee, Trader Joe's wine, gift cards, toys, laughter, prayers, and anything else that I am certain I am forgetting to post here but have not forgotten to appreciate. You guys are amazing...I only pray that someday my life is simple enough that I can be the one helping out. Thank you!

Thursday, January 27, 2011


The MRI did not show a tumor or any signs of cancer at all. The radiologist did say he thinks there is fluid behind her knee and some inflammation in her hips. We don't know the cause of this, but our nurse practitioner hopes to have more information for us tomorrow. Right now the Dr.'s are not worried about her leg and hip issues being cancer and think that therapy plus weight gain from her feeding through the NG tube should remedy her problems.

Susanna came home today so she could attend a school function with Linley tomorrow, but started feeling a bit under the weather before she left. Piper started running a fever after she left. Piper was supposed to get a platelet transfusion tonight, but she can not receive it while she has a fever. Please pray that she doesn't have another virus or infection and that the fever is just a bi product of her little body not having the ability to fight off illness. Her ANC yesterday was 50, which means she has nothing to fight off infection.

Side prayer request, the Dr.'s are holding off on Piper's chemo until her ANC comes up. This really makes Sus nervous. Both the CMV virus and the large amount of antibiotics keep her immune system suppressed and the Dr.'s feel like it would be insult to injury to continue her chemo at the same time because it would only further reduce her blood counts. Holding off on her chemo at this point in her treatment is less than ideal and that makes all of us nervous. Will get the results back from the CMV test and her UTI test tomorrow to see how well the antibiotics are working. Please pray that Piper's ANC comes up and she is not exposed to anything that could make her sick and delay her treatment further.

The good news is she is keeping all her feeds down and continuing to eat on her own without the NG tube bothering her throat.
We are still in isolation. Hopefully as she continues to improve we can get out of isolation and get out of dodge.

Thank you all for your continued prayer and support.

Chad & Sus

Wednesday, January 26, 2011


pipers mri has been rescheduled for tomorrow at six thirty in the morning. apparently, she is not considered an emergency so thats sorta kinda nice.

piper is pretty miserable and hungry but mommy is pretty worried. i think i shall go find an iced chai and some pediasure and make both of us ladies happier.

Tuesday, January 25, 2011

psalms 46:1-2

" God is our refuge and strength, a very present help in trouble. Therefore we will not fear..."

Psalms 46:1-2

Pipers xray from yesterday came back and they are showing something other than bone in the hip socket (I believe). Apparently, this could be one of a number of things that I totally forgot once the doctors said that it could be a tumor. While I have known since the beginning that the same drugs given to cure my Piper from her cancer can also cause cancer, I chose to ignore that information. But the facts are facts. Tomorrow Piper will have a MRI to find out what exactly is making her hip hurt and what exactly showed up on the xray.

I am scared. So scared. But I am not shaken in my conviction that God is leading every.little.step of my baby girls life. I am not shaken in my conviction that He is ultimately good and loving. And while I am at it I am so very thankful that tonight, while I will cry out to Him, He is covering me, Piper and room 194 in some serious peace.

i dont know what today is, dear friends.

thank you sweet husband for buying me this fancy shmancy android phone. you are correct that i would indeed use it for more than elmo videos on youtube and that addicive game angry birds. the best example is now at one a.m. in bed attempting to update everyone on piper...

and she is doing better. unfortunately because we are dealing with multiple issues we are in for quite the vacay at choa. super excited mommy is super excited to have guests who are not paid to take miss pipers temperature,

as of right now, pipers ng feeds are going well. she is currently getting ten ouncs over a twelve hour overnight period and two bolus one hour three ounce feeds during the day. surprisingly she is not only keeping all of that down but also drinking about eight ounces of pediasure throughout the day in addition to lots of water and crackers, rice, almonds, puffs, and the sugar off of mommys sour patch kids.

she will have her cmv levels checked again on wednsday to see if these mega doses of antibiotics are doing their job. they know that the virus will not go away until after her leukemia treatment is over and her immune system has matured but they do hope to supress it from flaring up as it did recently. her uti seems to be clearing up. her anc is still super low but that is expected with the cmv plus the antibiotics to treat the cmv. pipers onncologist has chosen to hold off on her chemo for at least one week. this makes me nervous but her blood counts literally can not be suppressed any more than they already are. lord, please allow her body to maintain the fight against leukemia as well as the fight against these viruses.

because piper has not been using her left leg, the muscles are very withered...dr lew had us go to get an ulltrasound to check if their is a visable reason she is suddenly unable to move it. hopefuly we will not be dealing with any nerve damage but wth the chemo she gets it would not be impossible. the good news we heard today is that the cmv has not traveled to her eyes as it sometimes does...i personally think its because they are making her intestines into a resort and have no reason to bother any other parts of her sweet self

and now we wait ...being in isolation is for the birds. the window to the hall is broken so we cannot look out their and the window to outside is looking right at about twelve maintnance men wrking hard at something or rather. piper is enjoying elmo in grouchland over and over and i am impressing myself by beating many, many levels of angry birds. hopefully the flu test will come back tomorrow negatively and piper can come off of isolation and we can resume our daily lunches out, shopping and visiting the fish and birds. seriously, if you have to get leukemia this is the place to get it.
i hope this wasnt too much rambling. alot is going on. alot is not. thankfully piper slept a little better last night and i am looking forward to having guests tomorrow. these are the best things to happen to the two of us since we checked in last thursday night.

Saturday, January 22, 2011


Piper is hanging out here at Scottish Rite. She was admitted on Thursday after showing a significant amount of weight loss at her monthly clinic visit on Wed. and a nice little jaunt to the ER on Thursday afternoon. Her blood pressure was extremely low, her heart rate elevated, her extremities cold and she was frighteningly lethargic. After about an hour of warmed fluids and beginning antibiotics we were transferred back to Aflac and from there it was told to us that her blood work taken on Wed was showing positive for Cytomegalovirus (CMV) and well as yet another UTI. Pipers ANC has dropped to neutropenic and we are still awaiting results on a flu test. Ugh.

The CMV antibiotics are pretty heavy duty for about 2 weeks and then a little less of a dose for another 4 weeks. This has the potential to be pretty serious but at the moment she is doing well. Pipers ANC being so low will make it difficult to fight anything off so we went ahead and had the NG tube placed in an attempt to get her little body stronger while fighting. So far she has pulled it out once BUT, she has kept her overnight feed down, plus all her feeds for today. We will be upping the amount given until she receives 24 oz over 24 hours and keeps it all in.

Once Piper got a blood transfusion she perked up a little and has snacked on some crackers and almonds. She is actually still drinking her pediasure so that's additional calories to the ones tracking their way down her nose. She wants to be super close to mommy and is not letting me sleep much at night but other than that we are spending a lot of time cuddling in bed watching Elmo, dozing, eating crackers and walking the parameters of the room. Unfortunately, because the CMV is intense for those who are immuno-suppressed, she has been placed in isolation and we cant even do our laps around the unit or our bi-daily visits to the gift shop.

So, that's what we are doing this weekend. What about you? We have been able to keep Linley busy with attending the Peter Pan play here in Atlanta, a sleepover here at the hospital and a running tally of fun loving babysitters while Mommy hangs with Piper and Daddy balanced work and classes. I miss her when I am here with Piper but she loves coming to visit because all the nurses go out of their way to let her know she is beautiful and wonderful. Plus, she gets to watch lots of tv and eat cafeteria food and that for a 5 year old, is enough to thrill.

And yes, I am bummed that Piper has had to have this NG tube placed. I am bummed to be inpatient but I am very thankful that there are options out there to help stubborn, sick little girls like her. Hopefully this will help her begin gaining weight, feeling more energetic and happy and get to playing, learning and growing as normal as possible. A night of good sleep would be a nice little cherry on top, if anyone is taking orders.

Sunday, January 16, 2011

One month from today...

This time next month, my sweet five year old will turn into an even (hopefully) sweeter six year old. I'm counting on it because she has never ceased to delight me and I am certain that she delights everyone she chances to meet.

And for the last 18 months I have learned firsthand that the best and worst part of having a child with leukemia is having another child to love at the same time. Sometimes I feel like I have no energy to entertain another child and yet, Linleys very being is the only reason I don't crawl into bed and cry multiple times a day. Sometimes I wish I could only focus on one child's needs and yet, I need the ability to talk about things like princesses, husbands and what her house in heaven is going to look like. Sometimes I want to hid out in the house and not venture out into that world where I have to compare my youngest with others and yet, I have a five year old who still deserves the park, play dates, trips to Target and a reason to wear fancy shoes.

Linley helps Piper keep Mommy exhausted and yet, without Linley I know that I would feel hopeless. She is my simple joy and after she wears me out she promptly rejuvenates me with her witty Linley-isms and stories. I praise God for her every day.

This is how she rolls when I tell her we're going to the grocery store...again.

First shes all, "hey mommy, I love you"...

...then she wants to know "wwwhhhyyyy????"... I remind her who the boss of this house is...

...and she reminds me that she is her mothers (bossy) child...

...then she wants to know about getting a balloon...

...and in a moment of weakness I say yes...

...then promptly remind her that she has to share with her sister...

...then I sooth her with visions of the huge race car shopping carts...

...but draw the line at buying candy for lunch...

...and so she promises that she will be good and I take advantage of her doing a semi-kissy face and let her know that I absolutely, totally, completely love all of her.

Wednesday, January 12, 2011

well, Happy Fall Y'all!

Its not fall anymore? You wouldnt know it here in Mi Casa Petite. Christmas was spent at the beach and because of that we (I) hardly decorated here and because of that we (I) forgot to take down the few Thanksgiving/Fall decor.

Want proof?

Yep, thats a turkey dishcloth hanging out in my kitchen and a crow and pumpkin welcome sign out in the snow.

Because of my super slacker decorating skills, I have a visual reminder that I never did the traditional "What I am thankful for" Thanksgiving post. And since it is now snowing outside, that crows and pumpkin welcome sign is looking a little bit out of place and I have big plans to get it packed away by oh, Easter. Maybe Easter?

Meanwhile, heres what I am thankful for in the last 24 hours:

1) A pharmacy that opens the store up, despite 6 in of snow on the ground, just to give my one year old her Methotrexate pill refill. And then not charge me for other things I added.

2) Piper cudding with Chad, Linley and I while watching almost all of Dr. Doolittle.

3) A friend with a funky sweet 3 year old who ventures to the mall with me and Linley in the midst of an ice/snow week.

4) Linleys twin size bed. Its comfy for a Mommy up with a sick baby.

5) My fantastic five year old who informed me that my freckles on my face almost make the Big Dipper.

6) The ottoman in the living room where Piper will play independantly for 15 minutes.

7) That second cup of Chai in the morning that I always find in the microwave at lunchtime.

8) Staying up late with my sweet Linley listening to her read and watching movies and not worrying about her being up at 7am.

9) A husband who is not afraid of throwing dinner together. Successfully and deliciously

And thats just the past 24 hrs. Imagine how thankful I will be when summer gets here and Linley is home all day, Piper is walking and I can leave the house without a hat or mittens!

Sunday, January 9, 2011

18 months and 2 days,

Piper is, that is. On January 7th she crossed over from the "'one" to the "she's one and a half" response when questioned in line at Target (always that place)

And while I am thrilled to be able to say that my daughter is one and a half, I am even more thrilled to report that she is a leukemia survivor. That comment is guaranteed to shut even the most self-impressed, pseudo mother-of-the-year who questions Piper size, what she is/isn't eating and the fact that she probably will be growling at anyone who glances our way. (sooo tired of super moms)

On the other hand, saying she is "one" was easier, because at her size she may pass for a petite twelve month old but not so much an eighteen month old. And that usually has me wanting to explain why she is so small and not moving independently and eating like a bird. Which I KNOW I don't have to do but dang it, its my beautiful child and I really hate the looks of horror that cross peoples faces. (sooo tired of being pitied)

So Piper is 18 months old. She is not walking. She is eating when her little heart so desires. She regards toys and playthings with indifference. She is my hip buddy unless I am pushing her Independence that day.

But she is amazing:

What she does do is:

1) take 2 pills and 2 syringes, twice a day, happily.

2) sleeps through the night. And her sister snoring and the vacuum cleaner and the kid with the marble collection upstairs.

3) she gives kisses to everyone at bedtime. She will growl at you the other 23 and a half hours a day but those 30 minutes are filled with love, love, love.

4) she signs "more", "please", "water", "eat", "hat" and "goodbye/hello"...she says "done", "momma", "dadda", "doddy" (doggie), "nini" (linley), "uh-uh" and other words which show us she is fluent in pterodactyl but not so much boring English.

5) she loves to cuddle up with me to drink her milk. I love this too.

6) she drinks perfectly out of a cup with no lid, straw or anything by herself. And hates anything but milk in her sippy cups.

7) she is standing by herself with support. And will hold my hands and walk around a little bit. And sometimes can be cajoled into pushing her play stroller over to another batch of pistachios across the room. And sometimes not.

8) laughs like her daddy and has the social skills of her mommy (note: the growling)

9) beat cancer. And I have to say, that's an awful lot for 18 months old.

So, I am thrilled when I stop and see what all my girl can do. And I learned many, many years ago that my life and choices would probably never measure up if I spent my time comparing them to others. The same goes for Piper. She is not typical. She is behind. She is stubborn, moody and loud but she is personally kicking leukemia in the butt and I must say that other 18 month old "aint got nuthin on her".

Keep reminding me of that would you?

Thursday, January 6, 2011

Ecclesiastes and Three Little Birds

My priorities and mindsets are shifting in a big way. Today, I was talking with a man who got roped into counseling me because his church is all loving and faithful and stuff and I was telling him that the only way I am coping is the knowledge that life consist of constantly changing seasons. The silence of Winter melds into the hope of Spring into the freedom of Summer into the complacency of Autumn and then back around, over and over. It is a beautiful thing...sometimes a beautiful mess but a well orchestrated mess for certain.

After tucking my two sweetnesses into their respective beds, I sat on the couch and opened up my Bible. It took me a minute to find that old Bible because for all my worship music and bible studying, I am seriously pushing that part of connecting with God away. But I found it and opened it up to the book of Ecclesiastes and read chapter 3 which talks about a time for everything. You know, where I got my fancy litany from above from? Yeah, there. My favorite verses are these (10 and 11) "I have seen the burden that God has laid on men. He has made everything beautiful in its own time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end." Beautiful music to this weary soul.

In a nutshell I was reminded (once again) that its out of my hands. And if you agree with me you will probably handle the junk that's coming your way someday a little better as well. And if you think I just put a little too much Jesus in this post then listen to our families favorite song these days.

Tuesday, January 4, 2011

How choking hazards may save my daughters life.

Ok, that may be a little of an exaggeration but it may not. Time shall tell.

Food? Well, Piper has rediscovered it. Some of it. You know, like popcorn, pistachios and grapes. There are a few other things she is loving but those are easier to eat and therefore not nearly as fun to blog about. But popcorn and pistachios and grapes are all boogers to nibble the husks off of and crack open and peel. Trust me on this one.

But thankfully, her odd food choices are opening her up to eating other foods. Piper loves steel cut oatmeal which on their own are a nice, healthy breakfast. I though, add enough butter and brown sugar to them to prove we are in the true south and she really digs that. Plus super cheesy eggs. And Doritos. And mac'n cheese. And shredded cheese. And the ever faithful Ritz cracker. And banana bread. And one fantastic day, Yogurt. And cheerios. And sliced apples. And wow, its almost a balanced meal plan. Unfortunately, this does not mean that Piper eats all these things every day but that she has tried and liked each of these at some point in the last week. Simple successes.

Favorites really are pistachios and steel cut oatmeal. Diapers as you can imagine are always fantastic. Her "super formula" is personally chauffeuring us to the poorhouse so we attempted Carnation instant breakfast milk. The calories are lower but the amount that she is happily consuming is much higher. If I weren't a little tired I would do the math to see if it is a fair trade out but as for right now, she is happy and one full little sleeping bean.

With the exception of breakfast taking over an hour and her always wanting to nosh on pistachios, I am so pleased with her progress. I pray that all talk of NG tube is forever in the past...and she still has another 2 weeks until her next weigh in. I'm pretty sure I am gaining weight from just cracking the pistachios and just mixing up the oatmeal so surely, Piper will make me extra happy at the clinic next time.