ICU

Shockingly, after 36 months of chemotherapy, radiation, a transplant and all the jazz that goes with a leukemia diagnosis, my Piper has never needed an ICU visit.

But today she did. Her oxygen, while it had been holding its own with the assistance of the nasal cannula and some good old oxygen air flow, today began to peter out. She stated pretty quickly and turned purple as Chad called for the nurse. I was home with Linley doing schoolwork when Chad texted me to come over. By the time Linley and I had made it across the parking lot and towards Pipers room she had already been moved to the ICU.

Since she's been here shes been moved to pressurized oxygen, which forces air into her fluidy lungs and keeps her from having to work so hard to breathe. This is working and her blood pressure and heart rate have begun to be a little closer to normal. They are giving her lots of lasix to help her to urinate and keep the fluid off of her...she has perked up a bit and did some movie watching and coloring with Linley which helped Chad and I's tears a little bit.

At this point they feel like she is stable and if she continues to improve they will be able to send her back to the regular Bmt unit for normal monitoring. The cultures from the last few days continue to be positive for this bacteria but once they had a name for it, they were able to change her to the antibiotic most beneficial to fight it off. We shall see. Our biggest prayers are that she can kick the infection, that she can rid her body and lungs of the fluids and the need to be here and that this problem will not keep her from receiving the IL2 shot tomorrow...unfortunately the line is thin as they decide how much her body can handle and how they can continue to fight the angry beast that is leukemia.

So now wait. You'd think I'd be good at this by now, but I am not. What I really am is at peace...scared to pieces but confident that God is handling it. He's surrounded us with amazing doctors and nurses and family that come running at a moments notice as well as an old childhood friend who doesn't mind visiting and supporting us.

We are in capable and loving hands.

Update 3/11/12

Piper was discharged on Thursday night. Friday and Saturday were spent in the clinic all day... And by all day I mean ALL DAY. Eight hours one day and then 11 the next, all for things that truly should have only equaled a 4 hour visit max. Each day outpatient requires Chad and I to balance the 8 oral medications she takes multiple times daily plus the two types of thrice daily Iv antibiotics and the constant TPN being given. Being on constant fever watch and attempting to keep Linley up to date with schoolwork is slowly wearing us down. Yesterday in the clinic she began running a fever but the attending doctor chose to allow us to go home after taking vitals and giving her a dose of Tylenol because everything else was fine.

So we walked across the parking lot to what we call home and she began to smile and do a little laughing and by the time she zonked out at 1:00am she was fever free. I got up to check her at 4am and she was running about a 99 degree fever but when I woke at 6:00am with Chad to hooked her up to her IV antibiotics she had jumped to 103.1. Obviously we called the doctor as we were packing up and Chad took her back inpatient where we currently are.

She continues to have fevers which respond to Tylenol just fine but also bring a heart rate of 160 or so with it. Her blood pressure is elevated but its her oxygen that we are really seeing struggle. She will drop to the 70s and they finally had to resort to the nasal cannula which has helped some but only when she is using a large amount of oxygen. A chest X-ray this morning showed some fluid on her left lung and as she has continued to struggle throughout the day, the doctors are putting in orders now to have a second X-ray given to see if things have worsened or not. She has had lasix as well as having multiple blood cultures done and stool and urine samples sent out.

Piper slept the entire morning and when she woke up she has been less than happy but not in pain. She will watch movies on my iPad and snacked a little on mac and cheese but something is definitely off. At this point they are keeping a very close eye on her.

My response to all of this; the leukemia, the scary vitals, the lack of sleep and mental olympics we are required to constantly take part in has been tears.

All day today.

I cannot stop crying and everytime a well intentioned nurse asks me if I am okay, it's all I can do to not lose it.

I'm really not okay but crying is all I can do about any of it so that's what I have done today. That and praying to once again have those sweet days with two girls and the ability to go outside and the desire to walk around and the hope that someday all of these horrifically tiring days will be in the past as I am able to enjoy these girls the way I desired to when I first planned for a family.

So much of this is just plain unfair and unexplainable and that does nothing to the immense amount of exhaustion and worry that rattles me on a normal day much less the string of days we have been having lately. And while we are constantly being supported, this lays on Chad and I...we both want and need to be the ones to care for both girls and struggle to stretch ourselves in ways we never hoped to have to stretch.

Flashback: the zoo for two

In the midst of cancer, chemo, minuscule amounts of sleep and foraging for decent meals is the fabulous simplicity of raising Linley.

Never do I so fervently praise God as I do when I think of her good health. True, she has her own issues (I'll share more about that another day) but she seems to have the healthy immune system of her mommy as well as the easy going nature of... Well, we don't know who. Someone far back in the genetic tree perhaps. Either way, she healthily and happily rolls with the punches. And this just makes being with her an even bigger joy than the already vast joy one I have as her mother.

On one of my "home with Linley" shifts last week, she and I visited the Memphis Zoo. It was a beautiful day and we both thourally enjoyed all the sights and a few smells, like her ice cream cone and that flower she loved to pose so prettily with. Because Linley was studying panda bears last week we made a point of checking them out and were blessed to see two very happy little ones running around and making us smile. At the risk of ticking off Ga residents, I believe that the Memphis Zoo exceeds the Atlanta Zoo due to the fact that they have much more animals and a very natural setting with minimal crowds. We will definitely be going back often and as usual I will be enjoying being with this seven year old of mine much more than the scent of the giraffe exhibit.

Tomorrow.

Both my girls are currently obsessed with the movie Annie. Linley received it for her birthday and she has quickly leaned all the songs and even breaks out some sweet orphaned little girl moves...and Piper just wants to be like her sister so she also is digging Annie.

And all day I have seen Linley belt out lyrics and tonight I was singing Tomorrow to Piper as I scratched her back and wooed her into a nights sleep and I realized I didn't truly know the words. Thankfully my two year old didn't care though I am certain Linley would notice right off the bat.

Now that Piper is snoozing I am searching the lyrics and loving them.

"the sun will come out tomorrow
Betcha bottom dollar that tomorrow
There will be sun

Just thinking bout tomorrow
Clears away the cobwebs & sorrows
Till there's none

When I am stuck in a day
That's gray and lonely
I just stick out my chin and grin
And say...

The sun will come out tomorrow
So you got to hang on till tomorrow
Come what may!
Tomorrow! Tomorrow!
I love you...tomorrow
You're only a day away."

Now, lest anyone think I am remotely as cute as Annie or either of my daughters while singing this, please know that only Piper encourages my singing and Linley has begun to look mortified when I do more than hum.

Thankfully for me, my maternal grandmother taught my own mother that "if you can't sing well...sing loud"

So we all do. And often.

And if these are the currently cool words to sing in my home I will hope that the girls both take them to heart and find the joy and optimism in looking ahead a little bit. In this ghastly world of cancer, so often we are told to focus on today... And while I think that is a necessary mindset to have to survive when the battle drones on, I also think that we as humans need to know that something is always around the corner... And we need to hope its good and worth waiting for.

Maybe that's just me.

Though I really doubt I am alone.

Now our personal Tomorrow will hopefully consist of discharging this joint. Granted we are really only moving across the parking lot but we will have locks on the doors and the ability to walk around without socks should we so desire. With this freedom comes a long list of medications and tpn and heightened responsibility that we are quite ready to work out.


The Natural Killer Cell infusion happened today around 5:15 and it was as anticlimactic as we anticipated. The actual syringe was only 10 ml in volume but was packed with several million of my natural killer cells...hopefully they are as pissed off at leukemia as I am. There was a room full if medical staff watching her vitals and a wall full of emergency response medication should something arise. Thankfully, the infusion went without problem though her heart rate and blood pressure today has been elevated and her oxygen has needed help... Not that she cares as she is acting just fine and happy. They continue to watch her closely.

Thus, we have Tomorrow. Im looking forward to it because sometimes living life a day at a time makes me feel stagnant and heaven only knows that looking backwards is the quickest way to emotionally run amuck...

So, tomorrow we keep our eyes on you.

And we sing. Loudly and badly.

I like to move it, move it.

I'm not so good at being still. My body and mind and all that jazz has a hard time focusing on one thing at a time. When I watch a movie, I also read a book. When I am on the computer, I am also prepping dinner. When I am sitting in bed reading a magazine, I am also painting my toes...the list goes on but suffice it to say I have a hard time settling down and relaxing.

Even when I am hooked up to a machine and told to relax for oh, say 6 hours straight. Pure awesomeness.

Obviously you can see how rejuvenated I was feeling in the midst of the natural killer cell donation this afternoon. I'm amazed that I felt so thoroughly exhausted after doing not a darn thing. Somehow though I did.


It may have been the fact that my brain was melting from boredom. I could only use one hand and even that one had an IV in it. A movie couldn't happen because I couldn't possibly also whip up a new pair of earrings at the same time like I am apt to do. And pointing and clinking on the IPad was not unlike how clumsily Piper works it while the book I had planned to read kept landing on my nose with no available hands to save my pretty face. All that being said, the actual donation was painless apart from the needle sticks and the nurses who worked with me were great, especially since they had to restick me again after about an hour due to my apparently wonky veins clotting up. And afterwards I was very tired and very hungry and very eager to use the restroom, all things easily handled and the rest of the afternoon and night was back to normal.

Tomorrow Piper will receive these NK cells. On Thursday she will have her second shot of interleukin 2 and hopefully she will be discharged and be a free girl for a few weeks. I can hardly remember having the whole family under one roof and semi -normal...whether its here in TN or in Timbuktu...I'll take it, dang it.

Piper is doing wonderful. Her rash is improving every day and while no one knows what the heck caused it, they are just happy to see it go. She is peeling so a large portion of our days are spent scratching her back and slathering her up with lotions. Piper completed this round of chemo just yesterday and we bid it a very happy adieu...hopefully she will have more prior to the stem cell transplant next month but for now we can deal with the counts bottoming from last weeks chemo but have a little break from toxic junk in her veins and all. Nice eh?

The only snag in this week has been the fact that Piper received her 4th CVL. Ugh. She somehow broke her single lumen CVL on Sunday. They were unable to repair it so the surgeon pulled the line at her bedside in her room. They used her trusty port for the nights TPN and early Monday morning she was taken to surgery. There they removed the port and placed a double lumen CVL, in anticipation of her needing it for the stem cell transplant.

(see how amazingly hot mommy could look every day if she were to become a surgeon or nurse in all her free time?)

So this is the best update I have. Piper is doing wonderful and this family is adjusting as well as we can. Our days are busy and our nights are a little lonely. We are in a good place and we feel very at peace and contented with life, despite how much the details hurt or confuse us. Each day is a blessing...each day with two daughters is a miracle and we eagerly accept this and wait and pray for the days to roll onto years and a miracle to happen.


It could.

I pray it does.

If you have itchy hands...

And want to support us then this is for you...

We have had an overflow of support for both Piper and our entire family. This support has kept us moving and I am certain, with Gods sweet grace, it will never end.

Because we are constantly asked what people can do to help I have listed two ways you can help out, apart from how amazing you all already are. Please know we love your fervent prayers the most.

Our family supports www.stbaldricks.org. St. Baldricks is a national organization who raises money and support for pediatric cancers alone. They raise money by holding head shaving fundraising events and this month my brother in law Nick, is heading up an event in Athens, Ga under the team name Perfectly Piper. He has worked tirelessly on this and we appreciate it but never more than the kids who gain research and cures and such from the money we raise by shaving heads. And yes! My Linley is bravely shaving her head as well so go ahead and donate some money to Chad and Linleys link below:

http://www.stbaldricks.org/participants/mypage/510874/2012

Also...

There will be a Chicken Stew fundraiser for our family in Monroe GA on the 17th of March. 6$ a quart so if you want to purchase tickets or have questions please contact Laura Needham 770.845.0503


As I said before, we are blessed by every little prayer, note and gift card that is sent our way. Thank you for making this crazy season a little easier.

And as for that address I know so many are waiting for, I hope to have one soon. We continue to be in limbo and are hoping to be moved from the Grizzlies House to a more long term apartment this week or next...

Chemo tomorrow

This will have to be short as I am exhausted and the ever so comfy sofa bed is calling my name.

Pipers bone marrow aspirate from last week was inconclusive due to a lack of white cells due to the prior weeks chemo... Keep in mind no one was expecting to not find leukemia but because this is experimental stuff here, there are many T's to cross and I's to dot... On Monday she had a repeat aspirate done and while that sample was also difficult to read due to clotting seen in the machine, they were able to manually look at the sample and see "a large amount of disease"... Which is what is necessary to begin and so yesterday afternoon I signed many consents as both Pipers donor and as her mother.

In following the eligibility of this study she would have been able to begin today but they are still awaiting results from the battery of infectious diseases she must be screened for...nothing to my knowledge as a specific concern. Because there are so many things to screen for, there are so many vials
of blood necessary...and this has to be done over a few days in order to not deplete her body of too much hemoglobin at a time. As it is she has been getting blood products every few days. Thankfully this is not uncommon and surely doesn't phase me.

Tomorrow we should be good to go. Five days of three different types of chemo; cyclophosphamide, clofarabine and etopisode... All pretty intense so the week post chemo should be rough. And I will be doing my NK cell donation on Tuesday for her infusion on Wednesday. Post this NK transfusion, Piper will receive a shot of a medication called interleukin 2 ( used to stimulate the nk cells to seek and destroy cancer cells it comes in contact with) every other day until there are no traces of my NK cells to be found, up to two weeks or so. I'm more than scared...while I know this treatment is intended for children with a lot of disease like Piper and that she is an ideal candidate, this whole process is new and foreign and more than anything we are literally at the end of treatment options for her.

If this doesn't cure my girl, there are no other rabbit trails to follow.

This very fact has made my whole soul hurt lately... The unfairness of it all can slam me in the face and yet there are no moments for wallowing in it all.

It must work.

Meanwhile Piper continues to perk up. After a few rough and quiet and moody days she has begun to show this facility what most of us already know...that my Piper is amazing. She is quickly becoming a favorite here on the floor and is wooing most doctors and nurses and therapist who come in contact with her. She has eaten like crazy today and I hope she will continue to have a few good days before the chemo catches up to her. The rash still is bad looking but it is clearing up on her face and she has begun to peel. If indeed, it is GVHD we will see an improvement when chemo begins to attack those pesky cells. If not I have no clue... They are still pretty baffled about it all.

I hope I make sense when I ramble on. My heart hurts today... It marks one month that fellow infant leukemia friend Paxton has been gone from her mommy and daddy. And I also heard from a fellow cancer family back on Ga whose daughter recently relapsed. I grow so very weary of this fight sometimes. Of crying with other mothers and worrying with other families. Of smiling at children who you know have little chance and of making myself chose Hope each day despite the massive odds that are stacked against not only my own child but most of the children we see here each day.

My soul is firm but my flesh is weary.

Come quickly Lord, come quickly.