Piper is happy and puking.

I wish I could simply write that Piper was doing wondefully but I can't lie. My 5 year old often reminds me (as she should) that lying is a sin, so we make it a point to not do too much of it. And so, Piper is doing ok. She has done 2 out of 5 days at the clinic without major incidence. Unfortunatley, after 4 WHOLE days puke-free she brought up her donuts this morning and then again at bedtime we revisited Pb and J sandwiches. Not fun for anyone. She is though, very happy. I am impressed with how cheerful she is, even when I am cleaning up her little face after a mess. She is being silly, energetic and sweet....just what we needed. Tomorrow is Chad and his moms visit to the clinic with Piper while I stay home and do the Linley side of things. And an awful lot of laundry as well.

Poor Piper hasnt slept on her actual bedsheet in over 2 months. She has been battling nausea and vomit off and on and it is much easier to have her sleep on a beach towel that is easily moveable when its christened. And fortunately, we hadnt changed that habit last night like I was planning. Unfortunately, the other people at the laundromat must think I am quite the pampered wife with all my pool time.

This is Piper eating donuts at the clinic today. I have found (by some weird coincedence that has nothing at all to do with my own love of Dunkin Donuts Caramel Blast and a simple cake donut in the morning) , that Piper loves the simple cake donuts from DD. She has not been offered a more sugary one and that is fine by me. But boy, does she like her donuts...she ate 2 before showing them back off to me an hour later. And tomorrow is Daddy's turn. Yesss.

Gearing up for crazy.

Tomorrow morning, super early if I might add, Linley begins Kindergarten. Chad and I will be among the throngs of whimpering and incredibly proud parents kissing their prized possessions off to another's responsibility. A little too emotional and scary if you ask me. But apparently an education is important for a 5 year old, especially if she needs to be curing cancer for kids like her sister. No pressure Linley, you super-genius you.

In all seriousness, Linley is thrilled. She needs to have some structure and some familiar faces day to day. She is very smart and is very sweet and is necessarily bossy should anyone take her watchfulness as timidity. I am confident that she will excel and I am proud of that little princess.

And just in case I have too much free time to worry about how she is doing 2 miles away, I can always call my mom and check on the other daughter. Because my mom is amazing and is taking Piper in for chemo tomorrow ALONE so that Chad and I can both be there for Linley on "the mostest important time in my very entire life mommy!". Piper will be having the 2nd to final round of chemo before she begins the much anticipated maintenance phase. Fortunately I have lots of "friends" (haha) who are oncologist/hematologist and they dig my Piper a lot and stuff so we were cleared to come in every morning and leave every evening all week instead of checking in to Hotel de Choa. The actual chemo will run for about 4 hrs and the "rescue drug" (which coats the kidneys) and the fluids will run an additional 4. That is 8 hrs total and that is a small, small, small room, folks. And Piper is a busy little, non-self walking little bugger so keeping up with her while dragging an IV pole around is not for the weak.

So please pray for my mom, myself, Chad and all the other helpers who are aiding us this week. Its going to be busy but I have felt extra impressed to pray for the effectiveness of these drugs. Thankfully, this past week has been heavenly as Piper has fully rebounded from what we are thinking was horrible acid reflux. Of course, not being able to know symptoms from my word-less wonder makes everything more difficult. But her Prevacid dose has been doubled and she a world of change! Watching her and Linley playing so happily together melts this non-emotional mommy...its what we have prayed for for so many years. Just in time for a possibly painful month but at least I am feeling rejuvenated and up for the challenge of it.

And I am up for it. So bring it on...Both Kindergarten and Chemo.

Zoo Atlanta

Piper stopped puking for an entire 3 days so we confirmed no rain for the day and loaded up the Camry and headed to Zoo Atlanta. Linley was thrilled, especially seeing as our small local zoo has 2 sleepy bears, an alligator and a few cool owls. She thought I was kidding when we told her there were giraffes and flamingos actually AT the Zoo as opposed to the neato books we pick up at the library. (Is that as sad as I think it is or am I just overthinking as I am apt to do?) Either way, the Zoo was awesome. My parents and aunt and uncle went in and bought us a years pass and we are psyched to go back...often. Happily. Here is the proof that we left the house yet again this summer. Proof that we were able to enjoy little snippets of this summer. Not how I planned but on Wednesday both girls were fantastic and these pictures are proof.

Brent Karasick

We have met many awesome cancer families in the last 10 months. I am always hesitant to post about them because I am certain I am going to leave someone out and they all mean so much to us and are all walking their own difficult paths. But as I have said before Infantile Leukemia is very rare. Scottish Rite here in Atlanta sees maybe 1 case per year, and the patient diagnosed before Piper was a little guy named Brent. And Brent finished treatment today, just in time to approach his Mommy's due date with a little brother. For 2 years they have hung in there and now it is over. So HUGE congrats to the Karasick family for paving the way for us. I am impressed with your Faith, encouraged by your Perseverance and humbled by your Patience. My family will continue to pray that the past 2 years have worked their magic and that Brent will celebrate Cure...as I am certain that he will.

Many blessings to you Karasick family!

Home. 7/22

We are home. We are well. We are tired. We are blessed and we are acknowledging that. I spent the day alone with the girls and it was good. Why? Because life is good. Even when things are bad, my life is good. And I will expand a little on that another night when I am feeling a little more philosophical. Right now I am simply happy and tired.

Nothing. Nada. Zilch.

No relapse. Not anywhere. Not in her marrow, blood or Central Nervous System. Whatever was the cause of Pipers lack of appetite and dehydration it is not Leukemia...anything else I can deal with. So praise God!

Her morning sedation went well and she was back in the room with me in about an hour. As soon as she saw me she cuddled right up and went back to sleep. I spent the 30 minutes just praying and praising God. I cannot explain the thought process as you await such life defining results but I felt an absolute peace. And the results brought joy. The GI doctor saw nothing weird during the endoscopy but took a pinch to biopsy just in case. If anything out of the ordinary shows up we will know about it is a day or so.

Right now she is sleeping soundly in her bed next to me. We had an expectantly eventful night last night and missed out on some of that sleep we both were looking forward to. Piper was to receive an IVIG transfusion. IVIG is an immune builder and she was low so they went ahead and scheduled her to receive it while sleeping because the nurse has to check vitals every 30minutes even though she has never had a reaction to it before. So Nurse Heather (one of my favs) was in and out and Piper was sleeping soundly but around 1130 she began to cry softly. Almost like when kids have a bad dream but cant wait up. I went to get some formula for her to calm her down and get her back to sleep but when I went to pick her up her little body was stiffened up. Thankfully, Heather was standing next to me when Piper began to shake and shiver like she was freezing. Heather immediately correctly assumed it was Rigors and called for some Demoral to calm Piper down. Unfortunately Piper began throwing up all of her dinner (and then some) from the shaking. Once they got the shaking down, she refused a bottle but rested on me. I wasn't about to lay her down so she and cuddled up in the chair until the transfusion was completed around 2ish. So I guess from now on she will have to be premedicated whenever she gets IVIG. Funny thing is that I wasn't scared until I had cleaned us both up and she was back nestled in my arms. Poor thing.

So we should be able to head home today if she continues to eat and keep it down. But praise God we are heading home leukemia free still!

Update 7/20 pm

Slowly but surely, Piper is perking up. Still not eating much, although she did nosh out on olives, crackers, ham and yogurt for dinner...but not much in the way of bottles/cups. Still not throwing up. She is still on fluids and she is now running around the Aflac unit with a walk behind toy and me chasing after her attempting to keep her from deaccessing her port. And that makes me happy.
Piper had a swallow study done this afternoon even though I told them that she is fully capable of chewing and swallowing anything she wants, it just has to be when she wants to. Of course, she did fine with both liquids and solids and I had a chance to talk to the speech therapist about doing some early work with Piper on her eating issues irregardless. Treating the leukemia is always first and foremost but at the times that Piper is feeling well we do attempt to treat her as normally as possible by offering her the same foods we eat and speaking to her like I would any child.
Tomorrow at 8:30am Piper will be heading back into sedation. This will be different than the monthly sedation's she gets in the clinic. Different meds, different tests being done and it will be close to an hours worth of time versus her normal 10-15 minutes. While I am not concerned about the sedation I am very concerned about results. I hope I have relayed the importance of good biopsy results. Basically, anything else is fixable. Relapse in Infant Leukemia greatly lowers the chance of long term survival and completely prolongs the suffering and treatment we will have to give Piper.

So, she is doing better but will still have her LP tomorrow. Hopefully I will know something pretty soon and I can update you all.