Wednesday, October 27, 2010

"Hey, Its okay"

to be wrongly impressed that instead of actually sounding out and spelling words to explain the pictures she draws, Linley actually does the initials instead...example: "IWATH" instead of "I want a tree house".

to dislike sweet tea. Actually, I hate the stuff. There I said it...

to halfheartedly wipe the shower walls off with an old washcloth someone left in there and then tell everyone I cleaned the bathroom today.

to sneak into my daughters rooms at night to kiss on their sweet, sleepy faces.

to hold off on doing laundry until Thursdays because The Office and 30 Rock are the only fathomable reasons to sit and fold 4 loads of laundry at a time.

to have both Tori Spelling and Clark Howard on my "ooohh-how-neato-are-these-people???" list.

to have days where I count down the hours to bedtime as I am hitting my alarm clock to get up.

to be 29 years old and just now figuring out how to wear lipstick

And FYI...I don't actually lust after the moms who drive mini-vans, but rather I lust after all the storage, and seat belts and sliding doors. Ahh...

Monday, October 25, 2010

And now we have Maintenance!

Piper has now officially begun Maintenance treatment. I think I wrote a little last week about what all that meant and consisted of. I for one, am not sure what I am going to do once or twice a week instead of visiting clinic. Maybe a hobby? Maybe not?

We made it to our 8:00am appointment, despite the downpour of rain, and she was sedated by 9:30. My mom thankfully came with me because I had a number of questions and I wanted to have total focus to pin the doctors down about her losing weight, fussiness and lack of appetite. She is now down to 6.4kilo (14.04lbs) from 7.7kilo (16.94lbs) at her 1st birthday. And this is not expected at this point in her treatment, she should be feeling better, eating better, acting almost normal...and she is not. Dr. Lew took some additional blood work to test for additional things to attempt to rule out less obvious issues. And yes, her blood work is beautiful with absolutely no sign of leukemia. She does have a UTI and has begun antibiotics for that. He also has begun her on an antihistamine that typically boosts kids appetites and we are continuing to add Duocal to every little thing she puts into her mouth. They have told us we can discontinue the Diflucan, but this still leaves us juggling 9 different medications dosed out multiple times throughout the day and week. We need to go back in 2 weeks to see if she has begun to gain weight and if she continues to trend downward we are visiting the GI Doctor for some answers. The use of an NG tube is the next step if she will not eat consistently on her own and nobody wants to begin that at this point in her treatment plan.

So there you have it. Some good news with some "meh" news. While her treatment is simplified we are finding the side effects of over a years worth of chemo on a tiny little body. And while we are in maintenance, we are not out of the woods. Piper is not cured but she is still in remission. Remember she must be cancer free for 5 years to be considered "cured". While that seems like a very long time away, our prayer is that the worst is behind us forever.

Thursday, October 21, 2010

Update 10/21

First things first, the Light the Night walk was an amazing experience. I have big, big plans to do a post about it but that wont be tonight. Also, Chad and I were able to take a weekend trip to New Orleans last weekend and again, big big plans to post about that one too. But...

Tonight I was just going to do a quick update. Piper is doing well. I say "well" instead of "wonderful" because things are still ehhh sometimes. She is not walking and I am worried that there has been some sort of muscular or nerve damage. On the other hand, I have been told that Maintenance should be different and that she should begin to catch up. As of right now she is still extremely picky about food, losing weight, not wanting to walk or be anywhere but on my hip, and does not verbalize much. She is signing some words (eat, milk, water, more, hello) and she will eat the heck out of one or two foods at a time. Seriously, right now she is digging cheddar cheese popcorn and vanilla yogurt. More than anything it is a frustration rather than a worry. I spoke with the social worker at the clinic on Wednesday and she began the paperwork to begin Piper on Babies Can't Wait...a program that caters to children with either disabilities and/or delays. Piper more than qualifies and we now await a call and a consultation. Hopefully we will be able to enroll her in oral therapies, for speech and eating and physical therapies, to strengthen her limbs. And that is that.

Piper was supposed to begin Maintenance on Wednesday, but her platelet counts were too low and she was delayed until this coming Monday. She is off all chemo until then and while that is a blessed little break, it only delays what we are eager to begin and someday, end.

Next Mondays chemo appointment is a little more in depth that usual. Because she is being sedated, she is unable to eat anything after midnight. She (blessedly) will get the first morning slot and will be given propofol to enable her complete sedation in order to be administered chemo into her spine. It is 2 (methotrexate and cytarabine) types plus a different type (vincristine) into her port. When she awakens she will be allowed to eat and drink and get the heck out of there.

Throughout the next 11 months of treatment she will have this sedation chemo every 3 months. Instead of visiting the clinic weekly or more as she has since her diagnosis she will only be there once monthly. Each month at her visit if she is not getting sedation chemo she will get a simple chemo push (vincristine) and a count check. Each clinic visit will follow by 5 days of twice daily steroids. At home she will continue with nightly 6mp and weekly oral methotrexate. While this sounds like a lot, I am told that Maintenance not only is a good milestone to achieve but also a chance for Piper to begin feeling better.

I just don't know what to expect so I am just rolling with what I do know. We need some prayers. Its been an amazingly rough year but I know we are blessed to have Piper come through it relatively unscathed. The worst is behind us but I need the wisdom to discern how much to "cater" to Pipers moods and how much to encourage her to become independent. Linley is doing wonderfully but I know she wants and needs more consistency in her world. Hopefully this is the beginning of yet another new normal for the Needham crew. And hopefully it is going to be a GOOD new normal.

Monday, October 18, 2010

two sweet fancy faces

At the risk of being hoity-toity, I have to confess that raising two healthy daughters is cake. Of course I rarely see both girls healthy but right now Piper is absolutely wonderful. Linley is always absolutely wonderful.

I have found that it obviously is a juggling act. Two schedules, two very different ages, two personalities, two types of health issues and two incredibly grand little fancy faces. I love it. I find great solace in watching Piper cuddle into my lap while Linley curls up next to my hip. Why anyone would ever chose to not raise children is beyond me...even with my life not happening quite the way I had it planned out.

I don't allow myself to worry about doing laundry every day, making perfect meals, getting Piper down for a nap or Linley taking a bath every night. Sometimes I lose my patience but I am now beyond certain that both my daughters completely get the idea that we all apologize when we make mistakes. And though Chad does not understand why I make the bed every morning (first thing out of it) it is because there is a very good chance that it will be the only organized thing in the house by noon.

I am okay with all of this as long as my girls are "healthy"...its the days when Pipers illness is obvious by her neediness or when Linley's inability to completely comprehend all of this shows in her attitude. That's when I struggle. But for today, I am rolling with two sweet little fancy faces who love their mommy a fraction of how much their mommy adores them. Isn't that the way it is supposed to be?

Tuesday, October 12, 2010

"Hey, it's okay"

to have 13336 unread messages in your email in-box.

to be thrilled when Piper poops and it is all IN her diaper, as opposed to leaking out.

to be annoyed that cowboy boots are in style...darn stylist copycats.

to lust after moms who get to drive mini vans.

to walk out the door to take Linley to school in only a sleep shirt and semi-pause while contemplating whether that is appropriate enough to drive her to kindergarten. its not.

to still get totally nauseated on the way to clinic each week until hearing good blood work results.

to ask your hubby whether he is ready for another baby even though you aren't either.

Thursday, October 7, 2010

Hayes Family

Last summer whenever I heard the word "cancer" I shuddered...but in that whole "can you imagine?" way. Now I shudder because I dont have to imagine, I know how difficult it is on the entire family. And now I hear of people who have cancer all over the place.

I have a friend named Kelly. She and I lived together in Texas way back when we were volunteering as missionaries. Kelly is vivacious, hilarious and a joy to be around. Kelly has a son who is 3 and a daughter who is Pipers age. Kelly is married to a Godly man who loves her and respects her and mainly, loves the Lord. His name is Andy. And Andy has cancer. If I am not misstaken (and correct me if you need to Kelly) Andy was diagnosed first with sinus cancer. After being treated for that he found out that the cancer had spread and there were now tumors in his brain and spine. He has undergone chemo, surgeries and radiation. He was told today that they are giving him 3-6 months left to live his life.

Kelly and Andy are believing that God can heal Andys body. I believe it too. But sometimes God choses to take us down very difficult paths and we have to trust that His will IS both sovereign and good. So irregardless of what Andy, Kelly, Travis and Jenna will endure in the future I mostly pray that my God will hold them. Please pray with me, with desperation, that God will heal Andy and hold the whole family. Cancer still makes me shudder but now I am fully confident that being held and comforted by my God is truly enough to manuveous me through another day. I pray that over the Hayes family...will you pray with me?

Wednesday, October 6, 2010

weekly clinic visit 10/6

I don't usually stay as on top of Pipers clinic visit updates as I should but I have 4 (yep, 4) loads of laundry about to be ready down at the laundromat and I am not down with doing them quite yet. And so I will use this blog as a handy-dandy procrastination tool.

Piper, me and 1 bazillion of our closest friends headed down Interstate 85 to Atlanta this morning. Pipers appointment was at 9:30am and we were in and out in about an hour and a half. We have the drill DOWN.

*Get in car, drink milk, stop and get donut/biscuit, arrive at Scottish Rite, unload most of our earthly belongings into the best stroller ever made, (wave, wave, wave and smile), walk across the street, scream because we cant push the red alarm button in the elevator, crack open the donut/biscuit bag, arrive at clinic,(wave, wave, wave and smile), have blood pressure checked, temperature checked, heart rate checked, keep noshing on donut/biscuit, prick our finger and get some blood, stand on scale like a big girl, (wave, wave, wave and smile), be placed in a tiny room, attempt to stick finger with band aide in nose and giggle, yell, leave tiny room, roam the halls and make new friends, growl at new friends, get tracked down by Ms Lois and dragged back to tiny room, hear how grand we are, get happy news, leave tiny room, play with toys, get tracked down by Ms Kim, back to tiny room, lay down, sign "eat", lick crumbs from donut/biscuit bag, lay down again, get my port accessed, quickie chemo push, sit up, (wave, wave, wave and smile), walk towards the elevator, stop to smear "magic soap" on our pants and shoes (???) at the lobby, walk across the street, buckle princess grumps into her car seat with milk and doggie, load most of our earthly belongings plus some back into trunk, get myself settled into my seat, stare out the window for a second, and drive back down Interstate 85 with a few less of my 1 bazillion new friends.

The happy news is that next weeks chemo is the last before Maintenance begins. Of course, we are practically walking uncharted territory with Piper and her diagnosis, but the longer she goes without relapse, the more hopeful we become. And Piper is doing pretty well. All of her blood counts look great and right where they want them. Nurse Lois and I talked a little about getting Piper signed up for some therapy to work on her eating and walking. And Pipers weight did go from 6.7 kilo to 6.8...multiply it by 2.2 and you have her in pounds. She is so very small but looks less like a refuge after every chunk of cheese she downs.

The rest of the afternoon consisted of Target, the library, the playground, stupid laundry, warming up left overs for dinner and taking a night time walk. Both girls were exhausted by 8:00 so we forfeited baths in favor of extra stories and yummy bedtime milk. Which leaves me with plenty of time to fold those 4( yep, 4) loads of laundry waiting for me. Unless Facebook needs me when Blogspot is done. And I am pretty sure that it will.

Monday, October 4, 2010

"Hey, its okay"

to wash your face with the hand soap next to the sink because the face wash is 6 steps to many away in the shower.

to wonder if a sister-wife would be a good addition to the family.

to realize that having a junk load of laundry is no reason to share my husband every other night.

to get giddy when the weather cools enough for cardigans (I lurve cardigans).

to have days where it is very, very, very difficult to like your children.(but to chose to kept them anyways)

to accept that marriage counseling should just be a given throughout your marriage.

to get totally itchy every time you watch Hoarders.

to admit to yourself that you really must watch too much TLC.

to rock a ponytail every day.