I dont like to think about that.

...and to be clear, I do not intend this to be a whiny, complaining tirade. Lets just remember that it is simply one more attempt of my own to chronicle this journey with utmost honesty.

My Piper looks a wee bit like a refuge. I don't mean that lightly or laughingly but truthfully. Between the multiple daily puking and the lack of appetite from high dose chemo, she has lost about 2lbs. This isn't much on an adults frame but she had securely held her own throughout the first 7 months of treatment. At her 1st birthday she was right under 17lbs, small but decent given circumstances. At her visit last week she weighed in at 15lbs. And she looks it. I have had to dig out her 3-6month clothing. Her little ribs show, as does her port. She has lost those fantastic cheeks and just plain looks like a kid who is fighting cancer. I don't like thinking about that.

Perhaps this hit me today because I was kissing on my 2 month old nephew Gunner today. Gunner is delicious. He is a roly-poly little guy with cheeks worth nibbling on. And he is a very healthy 15 lbs. The same as Piper. I also got to kiss on my cousin Wades little girl Alaina, who is almost 4 months old and had to pinch away some of my tears a few times. She was so healthy. So vibrant. So vibrantly healthy. She spent the day smiling, drooling and rolling over. Piper at 4 months old was lethargic in the bed. I don't like thinking about that.

What I do like thinking about is that we are nearing what is supposed to be the end of the rough stuff. I have no idea what to expect after the next few weeks of weekly chemo ends and we begin maintenance. Supposedly she should begin feeling better, thus catching up on being normal. But I don't know. I am first and foremost thrilled to have kept Leukemia far away for as long as we have but I am still a mom. I still struggle with comparing my daughter with other little girls and boys. There simply is no comparison. I still really, really don't like to think about that.


Perhaps, in true southern style I will mimic the great Scarlett O'Hara who said, "I cant think about that today, if I do Ill go crazy. I'll think about that tomorrow." That's how I have made it through the last almost 12 months so I think I will just stick with what works.

coke and "crack rock" soup

I couldn't make this stuff up if I tried to. Piper was contented to lick the spout of an empty coca-cola bottle while Linley was collecting rocks and leaves to apparently cook me up some " crack rock soup". Both were happy. Both were oblivious. Dfacs will probably visit soon.

Maybe it was because I had Linley quarantined in our bedroom all (beautiful, low '80s fantastic) day long. She has a Cold. I do not have time for all that. Pipers counts should bottom out any day now, thankfully she gets a shot every night to boost her white blood cells while being Neutropenic. I am seriously praying that Linley kicks it quickly because she is not happy about having to stay away from people...and neither am I. The Georgia Bulldogs first game of the season was today and Chad and I wanted to take the girls to some of the pre-game festivities. But we couldn't. Then Chad had to work and I was beginning to feel foggy from the last of motivation. I finally broke Linley out of the room to take an hour long walk searching for paintable rocks, (aka: free and fun crafts) then the girls and I ate macaroni and cheese and coke and "crack rock soup". What sort of fun did you do today???

Inpatient chemo is done. Done. Done, Done.

We are almost there my friends. Almost to the half way point and supposedly, a little more normalcy. And that would be wonderful.

Our visit was actually pretty good. Piper was a trooper and as usual, she totally melted all the nurses and techs and anyone else who wandered into her path. She ran no fevers, and only had that same ARA-C rash that she gets every time...small red dots that travel all over her body but never seem to bother her. Piper's first night was incredibly busy as poor Nurse Heather had to be in and out all night doing vitals, chemo and eye drops. She attempted to consolidate as much as she could each visit but so much of Pipers treatments are timed...and not with sleeping as a priority. At the suggestion of Dora, Aidyns mommy, we traded out Pipers crib for a regular bed and she slept through every thing on Wednesday night, all curled up to me. So, so, so much better than sleeping in that uncomfortable chair with her on my chest all night. ugh.

We finished up with the ARA-C at about 9:30am on Thursday, waited the 3 hours to begin the last chemo infusion, peg-asparaginase, which ran for 2 hours. We then found out that Pipers hemoglobin was 7.9 and they transfuse at 8, so we knew since her blood counts were only going to drop more that she needed a blood transfusion before going home. When all was said and done we were able to leave at 7:00pm and I made it home right before Miss Linley faded off into dreamland.

Major thanks to both my mom and sister for helping me out at the hospital and major thanks to my mother in law for holding down the fort here at our home with Linley and Chad. Charlotte made this homecoming the best yet...no dishes to do, a stocked fridge, Linley all prepped for school the next day and the laundry all folded up. I cannot tell you how much of a blessing all 3 of those ladies were to our family.

So now we wait, again, for Pipers counts to drop. She will become Neutropenic (zero or close to no white and red blood cells etc) and last time this happened after this chemo she ran a fever which resulted in a nasty infection in her port line and a 9 day hospital stay. I am praying we can skip the fever this time, but truly I just want to skip the Leukemia ever showing up. As of right now, she is still feeling pretty good and surprisingly has not thrown up once since Monday.

As I have said before this was Pipers last planned hospital stay. Obviously, I am aware that she will still be required to go in for fevers and the like, but no more chemo. Praise God! She will have a sedation with chemo around the middle of the month, followed by 3 weeks of weekly Vincristine chemo at the clinic. And then Maintenance. Ahhh.

These are a few pictures that I took during our stay. I planned to take more but really, Piper keeps us moving. This is my mom, Piper and I at the entry way into the Aflac unit, Piper pushing around her favorite toy as me and my mom chase her with the IV pole,Piper noshing on some yummy curry rice, Me and Piper sleeping in a better place that the darn chair, and the last chemo hanging on the Iv pole as well as her Beads of Courage...she now has 8 strands. (You cannot see the details but each white bead is a chemo, each black bead is a "poke" or needle prick, each red bead is a blood or platelet transfusion etc...)

This is Labor Day weekend and I am hoping that Piper feels well enough for us to do some fun stuff. We can never make plans but we sure are getting good at being spontaneous. :)

Calm before the storm

Well, we are here. Not in a horrible room. Got one of our favorite nurses. Its sort of like a vacation if I dont think too much. (you know, clean towels and free shampoo)

I was pleasantly surprised to find out that Piper will only get the eye drops every 6 hrs not every 4. I know this isnt a big deal but that is a possible 6hrs straight of sleep for me. I usually get about 5 per night so that is definitlye being added to the whole vacation feel. The cafeteria food manages to balance it all out though.

My sister Hannah came with me to the hospital to help out, or really just to crack me up. She is thrilled to have been able to park in the physicans parking lot since the normal one was filled up. She spent the better part of the afternoon talking about finding one of those white coats to wear back out to play the part in full, but really she just forgot her car was a lime green saturn and that is so not doctor-ly and would not fool anyone.

Before entering the world that is Childrens Healthcare of Atlanta and the Aflac unit we got some yummy curry from the best place in the world, Tin Drum. Delicious for me and Piper as well. And after she polished off some curry she snacked on some Hot Tamales. Seriously. Who has sensitive taste buds? Not my little girl.

So here we wait for the next 3 doses. Not really exitedly but ready as we will be. I do have a prayer request for you guys. As I have said before, most of the families we met at the beginning of Pipers treatment have since moved onto all outpatient or simply finished up. One family is still very much embroiled in a fight that is wearing the whole family down. Little Aidyn was diagnosed with a germ cell cancer when he was 14 months old. I am not sure of all the details but basically it continues to come back. He is now 2 and a half and has been through many, many chemo treatments, radiology and still the cancer is growing. They have recently put him on an incredibleyl difficult regime for the next 6ish weeks that involves all high doses of chemo, another round of radiation (if he is strong enough) and very few breaks. They are praying that he makes it through all of this and that it does the job. The regime has never been done on anyone but adults. As you can imagine his mother is worn and tired and so very full of grace. Please pray with me tonight for that peace only our God can give. And an extra measure of hope and strenghth as well.

I think that is all. This is the calm that is before the storm. I appreciate all the prayers for both our family but also for Aidyns.

Here we go.

Last time we were prepping to head into the hospital for chemo I said "bring it on". I dont feel quite so confident this time because frankly, each round seems to be hitting Piper harder and harder. Or maybe because she is older, I just don't know. Either way it is definitely sadder, messier and more exhausting. I can only hope any hidden leukemic blast cells are feeling it too...and disappearing forever.

Pipers appointment is at 1:30 tomorrow and they should begin Ara-C chemo within a few hours. She will get a dose every 12 hrs until 4 doses are given. (Ex: 4pm Tues, 4am Wed, 4pm Wed, 4am Thurs) Each dose runs for 2 or 3 hours I believe. After her last dose she will wait 6 hrs and get a shot of peg-asparagine in her thigh. Providing she gets no fever she will be in and out pretty quickly. Throughout the time we are there she will get steroid eye drops every 4 hours to ward off chemical pink eye, which is common with Ara-C. She will have to continue the eye drops for 48 hrs after we discharge.

A fever is very common with Ara-C. Piper has had this type and dose of chemo 2x before. The first time she had a fever at the hospital but never got one when her counts all dropped. The second time she had it she got no fever and we had a short visit but she developed a fever 8 days later that resulted in a 10 day hospital stay and an infection in her port. Ugh. I have no idea what to expect but I am praying that this is the final boot to leukemia.


So here we go. Piper is doing wonderfully. Linley is not too thrilled that I am gone for 2+ nights but she is very happy about Chads mom coming to stay while I am gone. Linley does get that this is the last time we have to go to the hospital for "medicine". Thankfully, I can tell her that Piper will only have to go if she gets fever. And she is definitely thrilled about that.

Tonight I am busy wrapping up loose ends for Chad and Linley. And doing my fair share of praying. And maybe, just maybe I will squeeze a little praise in because I still have my head and we definitely cant have mommy losing it anytime soon. :)

And remember that this is Pipers very last inpatient chemo! Praise God!

Beautiful

Breathe in. Breathe out. Life is beautiful.

Obviously, we are well. I am only letting you know lest anyone think I am falling to pieces again. Because I am not. I even slept straight from 12:30 to 6:30 this morning, which is the most sleep I have had per night in well over a month. I felt like a new woman and celebrated by shaving my legs. The whole house rejoiced. I made pineapple zucchini bread. Both girls are eating like its going out of style. Chad is school free for the weekend. And I am even reading an (almost) good book.

And so Life is beautiful. In truth it always is, but today it feels simple and beautiful. I love that.

I leave you with the Needham dancing song for the week...I love it because:

A) Pipers fuzzy little head begins to bob and her gummy smile breaks out
B) Linleys toes get to itching and she hikes up her skirt and dances with abandon
C) Chad peers at me with a smile on his face
D) I find myself singing it in the midst of the fresh fruit at Kroger irregardless of not knowing any words beyond "alabama, arkansas I sure love my ma and pa". And not minding.


Life is simply good.

Hello Toes...

...I just have to show you off. You never looked so fancy. And all because a sweet girl from church sent me an incredibly kind and encouraging note way back in December (or January or March or October, they really all run together) and included a gift card to a local day spa for a pedicure. She didn't know that pedicures are my favorite weakness. And she definitely had not watched me walk the halls at CHOA and watch my feet swell and my legs ache. She had no clue what this meant to me both physically and emotionally. And I finally had a chance to use it. I followed it up with a jaunt to Barnes and Nobles where I picked up a magazine that I could zone out to uninterrupted. And instead I napped uninterrupted for an hour. I can only imagine what people were thinking of me. I'm going to tell myself that they were only noticing my pretty toes.

This was a good day filled with three fantabulous and reviving hours.