Clinic Visit 6/09

Friday was Pipers monthly clinic visit and for the first time since her diagnosis in September of 2009, I was only in Atlanta ONE time in a months time. ONCE. I almost got lost on the way to the clinic, it had been so long.

It has not been uncommon to be in Atlanta 2 or 3 times per week, and it has been a given that we would be there at least once but this, well this I can really dig.

Of course, a day at the clinic seems a million days rolled into one. A 10:00am appointment means finally leaving with the rest of Atlanta at 4:30pm on a Friday afternoon but praise God for my mom (whom I roped into joining myself and Piper) and my best friend (who happily added Linley to her own girly group for the afternoon) who both rock my world and helped get me and the girls to the preplanned dinner date we had at 7:30.

Pipers counts look great, chemo went smoothly, IVIG was successful. Piper enjoyed the play kitchen, singing with the music therapist, eating pizza and doing a little coloring. I am always amazed at how very little this girl will sleep for me there at the clinic...she gets benedryl AND tylenol before beginning the IVIG infusion and STILL she only cat naps. Amazing.


I was reminded that we are beginning the countdown. Piper will finish her treatment in September of this year. I wont lie and say that the thought of finishing treatment is scarier than the thought of continuing. Relapse is always at the back of my mind and chemo always seems such a barrier...I fear for what her body will do on its own.

Like, seriously fear.

Unfortunately, since Pipers diagnosis I have struggled with insomnia. Both at home and away. Because I know this, I plan to keep myself especially busy the night before any clinic visit. Thursday night was no exception except Chad had to work so it was just me and the girls here overnight. I read, cleaned, watched mind numbing television and finally at 2:30 am I began to get droopy and wandered into the girls room for a final check. Just as I opened the door, Piper sits up in bed and smiles at me.

I melt. Like I always do.

And I brought her into my bed to cuddle for a minute but she just kept looking for her daddy so we called daddy at work and definitely surprised him. She was thrilled. Then she rolled over next to me, closed those sweet blue eyes and began to hum. I began to cry. It dawned on me as I was scratching her back and she was humming at me that I had not heard her hum herself to sleep since she was tiny. Remember that Piper dealt with temporary vocal paralysis when she was in the midst of the first few months of inpatient chemo? She did and it broke my heart because Piper came out of my womb humming herself to sleep and never picked it back up again when her voice regained its ability. So to hear her little self humming as her eyelids slowed their twitching and her hand rested under her chin just like my hand would itself once I fell asleep...well, I melted. And cried. And then did both all over again.

I am fearful of what this fall brings. Especially as I begin to see who my Piper is. I fear the possibility of what could be but when I experience moments like those, time seems to fall away and I am able, for a minute, to relish it without the stifling fear that seems to attack me at a moments notice. Thank God for those moments, indeed.

"Hey, its okay"

- to not be able to stop laughing at the part in the last post about my six year old wanting to "drink the juice" at church...we totally only do that on the full moon when all the snakes are more easily manipulated. (must I say I am kidding here?)

-to take 5 days to clean my super small bathroom. One day for the sink, one day for the toilet, one day for the shower...take a break day 'cause that part is a doozy and finish up with the floors.

-to like the show Mob Wives mainly for the music but also for the one wife who is not a shrew nor a shrinking violet.

-to allow your almost 2 year old to climb on the counters because it seems an awful lot like physical therapy to this mommy.

-to think the word "naughty" just plain sounds naughty. Like, keep it in the bedroom, naughty.

-to still be awaiting the day I can apply lipstick better than my daugher. Either of those daughters.

-to not understand why some people wear shirts that have wording on them unless they want you to read it. And I cant see very clearly so if I am squinting at your chest while you are walking towards me, my bad.

-to have daughters that dress significantly better than myself.

-to want to live in an era or a country that encourages ladies to wear those awesome hats that we saw at the Royal Wedding.

-to not taste the food I cook as I cook it...it give me the heebie jeebies which probably now means that I will never have a dinner guest again because everyone now probably thinks my cooking stinks.

"bathatized"

My Linley wants to be "bathatized", that is.

We often talk about Jesus in this house, because well, He is the cornerstone of all we attempt to be. And we are honest with her about how He loves us all but many dont love Him back. And we have begun explaining to her in the last few months what must be done to take communion or get baptized or call herself a Christian.

Tonight she brought it up. Like most nights I chatted about it a little and prepared to leave the room with a kiss, never wanting to coerce her into such a decision. My sweet Linley had other plans. This is what she said...

"mommy, I want to be "bathatized". But not just because I want to drink the juice with you on Sunday but because I talk to Jesus alot at night and because I trust Him now and because I want a best friend for forever"

Ahhh. So we prayed together. And went to tell Daddy. And prayed some more. And in her childish little six year old voice she asked Jesus to come into her heart and be her best friend. I followed her beautiful plea with a more emotional one of my own and we held hands and she then teared up "because she was so proud of herself". Again, it was lovely.

So for you, my firstborn, my little me, my sweet and observant light of my eye, I pray that you never walk away from the decision you made tonight. I know you are simply six today but I also know just how easy the faith of a child can mature into a faith that stands the test of time. I pray that for you...and when you feel like God is so very far away or like the world is so very appealing then I will praise God for that amazing blanket of Grace that He lays at the feet of anyone who beleives in Him. I pray that you will cover yourself with it when, not if, you feel at odds with how things will sometimes be in your life.

God is so good to us, sweet Linley. He will never leave you or forsake you and He will always, always, always love you with an unending Love. Cling to Him.

Thirty Shmirty

I have never been a big fan of numbers. And not for lack of opportunity since I found myself in the same math classes over and over again in high school and college.

I have just never understood the way the darn things worked together so easily for some (obviously odd) people. As for me, I enjoyed other parts of academia. English...no problem. History...fascinating. Science...all good until chemistry reared its ugly, complex, and often numerical head. Surprisingly, I can still count in Spanish but I think its simply because I use words to do so.

Even twelve years after graduating high school with good grades in everything but math, I still find myself dumbfounded by simple multiplication tables at times. And I have been known to count on my fingers and if necessary, my toes. When I lived in St. Petersburg, Florida for a season I often found myself driving aimlessly down their numerical streets and avenues. I never could get the gist of going down 31st Avenue and taking a left on 63rd Street...give me Smith Road to Azalea Lane any day. During a brief stint in cosmetology school I was being taught to add a third of this to a quarter of that and my thoughts would immediately begin contemplating what new color I should paint my toes or if I thought I should bring a book to the beach later that evening.

Have I made my case yet?

Obviously there are few things that I relish about numbers and the things one can do with them.

But while numbers are so not my thing I am pretty proud of my new one, "thirty". A lot of my friends fought turning thirty. Some said they felt old. Some said they didn't like the way it sounded. Some aren't where they wanted to be at thirty.

Me? I'm cool. Its a nice and even number. It wont have me failing a test or getting lost. It will serve me well, I believe. I had big plans to make a list (I dig lists) of 30 things that I want to do when I am thirty so...

1) get lots of duct tape for this marriage of mine
2) special bonding with my sweet six year old
3) the beginnings of a lifetime cancer free for my almost 2 year old
4) more babies? perhaps? pretty please?
5) an apartment with two toilets.
6) the ability to drink coffee without grimacing.
7) a hobby that brings in a little money.
8) knowing my God a little more every day.
9) patience. lets get lots of that.
10)learn to say "no" to Edys Rocky Road ice cream...just once in a while.

Obviously, I have not reached thirty goals for spending this year of thirty. You know, numbers and all. Plus I don't want to be a blog hog and I feel like my point has been made. I had a birthday and I am okay with being 30, especially if I can spell it out like this, "thirty"..

1 year down, twelve to go.

Remember this sweet Linley?

This was way back when. You know, when you were 5 instead of "almost six and a half". Back when you liked your hair short because you so disliked brushing it out. Back when you could read a few sight words and count not so high. Back when you had not yet met your classmate Darius and learned all about Micheal Jackson. Back when pink was the only color you wanted to wear and when your favorite snack was go gurts.



Flash forward about 8months and you are so very grown up. No longer tied to a pink fantasy you now love turquoise or better yet, fushia. You have shown an incredible aptitude for reading. You have been known to write a very detailed description of a rough morning when mommy threatened to sell you at Walmart. You have found science to be much more interesting than I ever did. You have told the faculty at your public school all about Jesus's Birthday, aka Christmas and let them know we dont like magic. Your confidence is growing by leaps and bounds and your compassion is as deep as those sweet blue eyes.

You have proven to anyone watching just what I have always said, Linley Coe Needham is Especially Special!

(Next up, First Grade)

Clinic Visit 5/16

Today was Pipers monthly clinic appointment. Of course, I say monthly with a smile on my face because we are more often than not there each week, often two or three times a week. But thankfully, things are most definitely on the up and up. Piper is doing wonderfully. All of her counts and numbers are beautiful and show no signs of anything worrisome. Her CMV results will be back in about 48hrs and we will surely see her virus levels staying suppressed.

Pipers monthly clinic visit is always the same. Vitals, blood work, chemo: sometimes spinal and sometimes not, and then a 4 hour transfusion of IVIG. And today was the same. All went smoothly, so smoothly that Piper is restarting her original protocol.

The maintenance protocol for most leukemia patients is typically the same. Clinic visit every month with a port access for chemo and blood work. Every third month she has sedation with spinal chemo and the other months she has Vincrisitine in her port. After each clinic visit the patient has 10 doses of Dexamethasone given over 5 days and then the patient finishes up the month with oral 6mp each night and an oral dose of Methotrexate once a week. Then it all starts again.

Piper has been held off of steroids since January. She has been off of 6mp and Methotrexate since March and has only received her monthly chemo in the clinic. This has made me very nervous because I want her little body to receive all the chemo it can handle until this September when please Jesus, she is done forever.

Thankfully today, Dr B made the decision to restart all of her chemos and steroids. I am certain that by Wednesday I will be rethinking my excitement over it in the midst of some serious steroid attitude but until then I just continue to pray that each little dose is doing big damage to any little cell that has dared to hide out.

As for today, she was a joy. At almost two years old we are only just beginning to see what type of a little girl we are raising. She is sweet and silly and I am impressed daily with what she has already overcome.

Have I mentioned how very much I love this little one?

Mothers Day 2011

I love my husband. I love my children. Because of those three beings in my life, I have a new respect and admiration for my lovely mother.

You see, my mom is quite possibly the best thing since sliced bread.

She has been the most selfless and encouraging soul to walk besides me. She builds me up and shows me my strengths when I feel empty. She lovingly chastises me and shifts my mind when I am wallowing in the mire of my feelings. She rejoices with me when my life feels blessed and sobs with me when I am kicked to the floor. She finds the itsy, bitsy silver lining in the sky of dark, dreary clouds and sets her gaze on that. She is the epitome of a Proverbs 31 woman and her faith in God is the anchor to which I tie my recent wandering ship. She is lovely.

I am a wife. I am a mom.

Someday I hope to have half the grace my mother has.

Today I will prove that I do listen to you, mom.


Being your daughter has taught me...


1) That yep, cleaning the kitchen before bed DOES make the next day begin more smoothly

2) That "sneaky" is indeed a very annoying trait to see in people.

3) That my daily chai also tastes better the color of the coffee table.

4) That midnight is the best hour of the day.

5) That 6am is an ungodly hour.

6) That I should have gotten a hobby when I was a teenager.

7) That a stash of sweets are best hidden above the oven/stove/range.

8) That parenting is best done with a mix of conviction, prayer and grace.

9) That gardening is salve for the soul.

10) That life is best lived as an opportunist in every way.

11) That beautiful bed linens are a worthwhile splurge.

12) That knowing all the locations of local bathrooms will make my life much easier.

I love you mom.