Saturday, July 24, 2010

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 I am certain that he will.

Many blessings to you Karasick family!

Thursday, July 22, 2010

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.

Wednesday, July 21, 2010

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!

Tuesday, July 20, 2010

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.

Monday, July 19, 2010

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.

Sunday, July 18, 2010

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.

Saturday, July 17, 2010

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.

Friday, July 9, 2010

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.

Tuesday, July 6, 2010

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 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.

Monday, July 5, 2010

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.

Friday, July 2, 2010

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 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 if you need/want directions...just let me know!