I have a case of the "I told you so's"

I told the on call doctor this weekend that Piper was drinking near to nothing and not wetting many diapers. I told her Piper was fussy and that I was concerned because she was so irritable for no apparent reason. And she pacified me and I doubted myself and sure enough Piper is very dehydrated and we are now inpatient at CHOA. Ahhh, junk.

Piper was scheduled today for an early morning LP (lumbar puncture with 3 chemos to her cns) and a push of vincristine. They went ahead with her sedation and while she was under attempted to get a sample to send out. They also attempted to catheterize her to get a urine sample. And neither were too successful. Her biopsy was tainted with blood (apparently not unusual or reason for concern) and her bladder was near empty. So now she is getting fluids around the clock to see if she feels any better, and they plan to do another biopsy on Wed or so. Both of the oncologist that she sees told me separately that they are NOT concerned with a relapse because her blood work still looks beautiful. There is a chance of relapse in her cns (central nervous system) but that would be very, very rare in infant leukemia, especially when she has never shown any leukemic cells in her cns. Not even at diagnosis. But it is still something to rule out.

The GI doctor came and visited with me and said that he is going to double her daily dose of Prevacid and will possibly do a scope when she is sedated for the biopsy. He didn't seem too overly concerned but I know that something is amiss and I am pushing for someone to figure it out. And the dietitian also gave us a visit and agreed that the Enfagrow could be part of Pipers milk/cup aversion. She encouraged me to look into replacing Pipers Enfamil Gentlease with Pediasure whenever Piper seems to be back on track. As if I want to rock the boat if the kiddo eats again...don't think so. She can go off to college with a sippy cup for all I care as long as she isnt 16 lbs any more.

So here we are waiting and walking. I am not kidding when I say the kid is a mess. She is whiny, pouty, clingy and sobby. Not at all like the Piper we all know and love. I am a nervous wreck. Possibly more than when we went to the doctor before she was even diagnosed, because now I know what we are up against and I know the worst case scenario and I am scared. Please pray for answers because until we have a reason for all of this I cant help my mind from racing down the scary path. And I am so not ready to go there...but I will tell you that "I told you so" and I wont be mistrusting my mothers instinct just because someone else has a fancy degree.

Just a little family jaunt.

Unfortunately this summer has not been one filled with all the fun that I had hoped for. While some days are better than others, nothing is consistent enough to really plan around. I am immensly happy that there are lots of little girls running around our complex that love Linley and that Linley loves right back. Loves enough to trade her princess silly band with...and for a 5 year old that is a true best friend. We have a small pool and a sprinkler and the girls are out there in that about 3 times a week but we are hesitant to actually pack up and go to a pool.

But I had enough. After a busy and fussy week, I begged Chad to take me and the girls to the local state park to the beach area for some much needed away from home time. And he did. And we invited his mom because I still am giddy with adults to chat with. And we all had a great time. We chose to go at 6pm to stay away from that hot GA sun and it was a perfect choice. We didnt leave until it got dark and for the most part Piper was happy. Linley is quite a fish and really loves being thrown into the water with a big splash. It was simple and it was easy and it was good.

Something is off...

...and I am not sure how to describe it. Piper hasn't been herself since mid-May. She has been fussier, clingier, less hungry and really tired. I am trying to not worry about that horrid disease coming back, but I confess that is the first place my mind goes.

Unfortunately, on Monday morning Piper goes in for an early morning sedation where she gets 3 types of chemo targeted to her Central Nervous System into her spine, followed by 10 doses of steroids over 5 days. In the past she has usually had about 3 or 4 weeks of happy Piper to heave me through the roughness that is Steroid Week, but not this time. To say I am concerned about all of us is an understatement.

Please pray that she begins to eat again, stops throwing up and acts in some way like a normal 1 year old for a little while. I dont know whether this is the leukemia, the side effects of chemo, her being a fussy little girl or teething still. Its difficult because she cannot tell me where she hurts or how she is feeling...she just fusses. And I just worry. And really, none of us are feeling too perky with all of this going on. I did speak to the Aflac doctor this afternoon and voices my concerns but she felt confident that Piper could wait to be seem on Monday. Her counts are strong (5,800) and her CBC looked good at her appointment on Wednesday. So unless she gets a fever we wait until Monday and I corner her ocologist and pepper him with questions.

Piper is One and my God is good.

Piper Jean Needham was born on July 7, 2009 at 11:00 am after a mere 4 hours of labor. She was, and is, a beautiful strong blessing. Every child is, but Piper since her conception has been different. I can explain...

Chad and I began our plans to give Linley a sibling before she even turned 2. Throughout the next 2 years we renovated a house, focused on college and fought hard, selfishly and often. It wasn't until I moved out of Chad and I's home that we began to get marriage counseling. For 5 months we lived apart. It was a week to week struggle to walk back into the room together and delve into our own personal issues and how they affected us as a marriage. We joke that we had an exceptionally good session and weeks later found out that we were finally, after 2 years of trying, expecting another child. Surprised? Oh yes. Happy? Oh yes.

I didn't take a day for granted. And now I know why. What a year it has been. What a (busy, busy) blessing you have been Piper. You have helped this mommy to truly trust in a God that I thought I knew. Oh I love you and what you stand for. Hope. Love. Trust and the Goodness of our God.

If you are rude to me I will blog about it.

The scene is simple. And frequent as it takes place in Target (a.k.a. My Own Piece of Heaven) The props are my own sweet girls and some other exasperated lady and her incredibly annoying disobedient 3 year old son. The time was obviously nap time, mealtime or just plain spoiled time. I cannot confirm which one as I was not the parent of the said annoying disobedient 3 year old. But I was annoyed because he kept chucking gum at me while she chatted on her cell phone and Linley wanted to know if that was OK to do in Target? (FYI: No)

Exasperated lady: why are your girls so good?

Me: I am just lucky (and we discipline, but no reason for me to judge eh?)

Exasperated lady: I guess so! They are cute...is that one bald? It looks bald. Is it a boy?

Me: ( really? did she really say that?) yep. Shes bald. And wonderfully obedient.

Exasperated lady: Shes about six months right? No? Shes almost 1? Is she OK? She must not be OK if she is so small and bald.

Me: (jeez...) She has Leukemia

Exasperated lady: (Gasp) That's not funny!!!

Me: We don't think so either.

Seriously??? We changed lanes pretty quickly and I muttered a lot under my breathe. It wasn't until I was retelling this story to my family that I saw the small amount of humor in her rudeness. But I was left imagining how hard that conversation would have been to explain to my 5 year old if it were her as the subject. Thankfully Piper was unaware and still gave Miss Exasperated Lady one of her gummy smiles. Traitor.

4th of July 2010

4th of July came upon me very quickly this year. Everything in life happens in phases, seasons and stages, I have learned this to be true especially the last year. On the 4th of July last year I was 3 days overdue with my second daughter, Piper. I am one of those ladies who absolutely love to be pregnant and I also was already the mother of one fabulous daughter. I was comfortable to let Piper arrive in her own sweet time and only worried for Chad if she were to be born on the fourth of July. (Chad has a theory that everyone born on a holiday is "weird"...whatever that means. Obviously, it is a well thought out and in-depth theory)

So I enjoyed my 4th of July in style. Cooked out, visited with friends and family, played with Linley at the park and finished the night off with amazing small town fireworks. Somewhere in there I am sure it was mentioned just how different next year would be with Piper nearing 1 year old. Of course, little did I know just how different this year would be. Either way, 4th of July 2009 was one of confident dreams and although I am a little less confident of my dreams this year and I am immensely confident in my God and that more than comforts me.

So hopefully 4th of July 2011 is even better...perhaps then I will be able to have confident dreams AND a confident trust in God. :)

Meanwhile, check out these sweet girls from the holiday weekend.

My daughter is a superstar

If you all have fantastic memories, and I am sure you do, then you will remember me mentioning having Piper's pictures done at the clinic by an amazing organization called Flashes of Hope. One of the poses was one of Piper in nothing but a diaper cover, a big bow and her 3 (at the time...we now have 5) strands of Beads of Courage. Well, today I answered my phone (seriously, I did...be shocked) and it was a Flashes of Hope representative asking for my permission to use that picture in a new gallery that Scottish Rite is designing. How cool is that??? No matter where we are in 10 years, my sweet Piper will still be gracing the halls of her second home.

And in my defense for not posting these amazing pictures yet, I only have a netbook. Not a grownup laptop. Thus, no cd rom thingy. Thus, no posting yet. But I will get the picture on here for you guys plus the rest of them.

Other than that I don't have much to update. Piper is back to normal. Steroids are gone. Thank God. Her top 2 teeth have broken through and she seems oblivious. And why shouldn't she be, she's been eating steak and table foods since she was 6 months old with no teeth. Obviously they are not necessary for my little one. She has taken 3 steps unassisted but usually falls down from laughing. And she has the sweetest little laugh. Its all squishy nose and growling. So sweet.

She turns One next Wednesday and we are having a party/open house on the 9th at 6pm at my parents house if anyone is interested in dropping by. So many people have been praying for her so this is your chance to see her in action. And she is simply awesome so its worth the trip. My email is sus581@yahoo.com if you need/want directions...just let me know!