little girls are fun...

...because they wear hair bows! And I love me some hair bows! Well, that's not entirely true, I am fairly certain that Linley didn't wear one until she was 2 because I thought they looked silly. Fast forward 3 years and I have learned that my sweet Linley has her Mommys hair. Her Mommy's fine, thin and definitely boring hair. (although Linleys is a pretty blond). Once Linley got old enough to want to grow her hair "as long as Rapunzel" I had to figure something out or else my pretty little girl was going to look like a pretty little orphan girl. Thus, an amazing collection of hair bows. (And clips. And ties. And headbands.) Poor Piper has only a few old man wisps but nothing to grab onto...and that's okay because we now have lots of stretchy headbands!

This is what happens if you get bored at the Needham house. We play Hairdresser...and dont want to leave Piper out so she got all fancy too! Pretty awesome eh?

Sweet Quiet.

It is Friday night and all is well. Piper and Linley are settled into bed and Chad is at work. I am curled up next to the fire, planning a big night of nothing but laundry and possibly an old Doris Day movie. If you were to peek into my window you would think I was a calm and peaceful mother with a blessed family. And I am.



We chose to keep Piper here at home this week. Because the chemo is so intense, and because her counts drop to virtually nothing, we felt like this was the best attempt to keep her well. As of right now she is happy and no signs of a fever. Of course, because it is our family and things are never as simple as you would imagine we have been very busy none the less. On Wednesday, Linley and I were baking some yummy granola and Piper was next to us in her excersaucer "car"...she was happy and chatty and apparently taking off her cast the whole time I was focusing on measuring out almonds. Little stinker took it off and began laughing. I couldn't believe my eyes for a minute. She looked like Larry the Cable Guy with her cut off sleeves and I couldn't figure out why she looked so strange with so much flesh showing. Until I realized the cast was under her feet and she was waving her arms around.

We took her to the ER that night and they put a temporary cast on then we went today and they put a new so-called permanent cast on.. Its purple and its girly and its a good thing because she doesn't have a lick of hair on her head and I am tired of telling people that she is not a boy. That is almost as annoying as telling them "no, not Paper...her name is Piper". That happens a lot actually.

We are still praying for a quiet weekend and week as her counts rise with no complications. I was reminded today that we have been wonderfully covered throughout the past 5 months. I cannot tell you how certain I am that it is simply the prayers of the saints. All of you on your knees for my little girl. Thank you. Thank you so much.

I have big plans to begin a Thankful Thursday. It will be a little way of reminding myself that I still have many little joys in my life. It will also be a way (hopefully) to keep Linley involved, because my girl loves a good project and I love a good chance to teach her to be thankful. It will probably be as simple as photos of things that most kept us happy throughout the week. Who knows...I think next Thursday will be the debut but then again....I don't follow a plan quite as well as I used to. :)

Home Sweet Home

Home at last. Piper did a total 180 from the last few days. She went to bed last night and had a fever at midnight vitals. We gave her some Lortab (because I now easily stick narcotics into my kiddo) and she slept well. Woke up and steadily got happier and happier as the day went by. She even began leaning into our kissing as if to kiss us back. Of course, not if any of the nurses were watching...but she did. Although she was doing really well, it was decided that Piper should stay at the hospital until the afternoon to ensure the fevers stays away for 12 hours. It did and we got out of there as fast as the nurse could draw up discharge papers. What a visit.

Now I am home and happy. Spent the evening eating a wonderfully home cooked meal by Chads Granny and loving on my family. Blissful. The good things in life are truly free and simple. Now we are waiting for her counts to drop, usually about 7-10 days after the first of her chemo. Supposedly, the HD ARAC causes fevers when the counts drop as well as when she is receiving the chemo. Fun, but being readmitted is not what we want to do next weekend. So pray with us that she does not get a fever and that we can keep her away from ickiness while her immune system is gone. If she does not get any fevers we will be outpatient chemo for the next 9 WEEKS. Yes, 9 weeks...I wont know what to do with my time!

Sunday 2/21 pm

The only thing you can plan for with Leukemia is that the plan will change. Often, multiple times. If I were going by the protocol, Piper and I would have been out of here yesterday around lunch. Unfortunately, all of those fun and exciting things kept happening and her last dose of chemo finished up at 7 tonight. Because her fever keeps coming back and then subsiding, then back and then subsiding, the Dr on call made the decision to have us stay another night. Usually if the child gets a fever while getting the ARAC, it will go away around 12 hours after the last dose. So, hopefully by morning she should be fever-free and we can get the go ahead to leave.

I always want to get home but this time I really am missing my husband. And my sweet Linley. And supposedly Piper will probably get another fever when her counts bottom out, probably this weekend. Which means we are back again. But on the up side...this was Pipers last chemo for this phase. And this phase is the last in those oh so very hard and aggressive 6 months. Thank you Lord...I see the light at the end of this tunnel.

As far as prayer requests go, I have a few.

1. That Piper does not get a fever when her counts bottom out. (and that this fever stays away)

2. No relapse when the aggressive chemo begins to wane...I pray that it has done its job and her body will show no leukemic cells ever again.

3. A job for Chad.

4. A little more of that peace and grace. The peace to keep us going when its ugly. And the grace to keep our friends and family around when we get ugly.

5. Also please pray for the Sellers family. They are hurting and tired as they maneuver this new life without their little Pyper.

What a day.

What a day. The nurses were never able to unclog Pipers CVL and around 9am we started talking options. Pipers primary nurse, Jaime, whom we love, thought that this line was probably at the end of its little life...and suggested the port. We spoke with the Dr and she agreed and told me to hold off on feeding Piper anything else in order to be ready to go at any minute for surgery. We waited. And waited. And waited. Finally, after a long day of nothing, she was called into surgery at 7:45pm. She made it from 830am until 10pm to eat ANYTHING. And wasnt tooooo horribly fussy either. Surgery went well, Piper ate a big old bottle and went to bed. She woke again at 4am and got another few ounces and some Lortab because she was hurting, not only from the surgery but the intubation in her throat while they do it. (And the broken elbow...dont forget the broken elbow. Or the Chemo that began at 11:45)

She ended up sleeping until 11am. When she woke up her right eye was swollen so she was given Benedryl to see if it would get it down...it didnt go down until tonight around 9ish. No idea where that came from. While on this HD ARAC Piper has to get steriod eye drops every 6 hours to prevent conjunctivitous, so she got those throughout the day. And then she slept. And slept and slept. All day...eating every so often and getting Lortab to keep her peaceful. It was both calming to see her resting and heartwretching to see her in this shape. This evening she began spiking a fever, which is normal with the HD ARAC. She got up to 102.6 and then it kind of hung out around 102 until it went down to 98.5 at midnight. Because Piper got so much sleep today she woke up at 10 in a WONDERFUL mood and stayed happy until I just put her to bed at midnight. She has some sort of random rash that looks almost like chicken pox on her body. Where on her body you ask? Well, it moves. One time I look its on her left cheek, then it disappears and we find it on her arms...and wait! There are spots on her little legs too. Very strange but not bothering her in the least so we just play I Spy A Spot and roll on.

She began her 3rd dose of the HD ARAC at 11:45 tonight and I am praying she sleeps through the night and stays fairly contented. Her little body is being beaten up but I pray, like always, that it is one more painful, ugly step to Cure. And just so you know, it does help to know you are praying for me. It really does.

Linleys 5th Birthday party

I will blog about Piper tonight but right now I want to show off some pics of the family birthday party that Linley had Tuesday night. Her "friend party" will be in March to ensure that Mommy and Piper are home and able to enjoy it with her. Instead of a cake she chose ice cream sundaes and then only chose to put sprinkles on hers...silly girl. We decorated a throne for the Birthday Girl, which she loved. Chad bought her a fancy necklace with her birthstone and the letter L on it...she said she feels like a teenager, which to her is close to heaven. And almost all of her favorite family were around...she does miss you Aunt Coco and Uncle Nate!

Feb 19 pm

No chemo yet. Piper's CVL, after trying all night to get it unclogged, is still not workable. The decision has been made to remove it and replace it with a port. To be honest, I am very happy with this. Having a port will mean normal bathing, no dressing changes, no flushing every other day, a decreased risk of infection, less of a chance that she will pull it out while moving around. The only catch is that it has to be "accessed" now instead of just hooked up. Part of the CVL is external and it is a simple act of connecting and disconnecting the end to the IV when doing chemo or transfusions. A port will have to be accessed with a needle through the skin. We will use EMLA cream which numbs the area before they access it and then it stays put until we are finished with whatever procedure. And it will only have to be flushed 1 time a month as opposed to every other day. Much easier especially as this is Pipers last chemo in the in the initial 6 months of intensive treatments!

Last night at 1130 an incredibly loud, unpersonable orthopedic surgeon came it to let us know that Piper did indeed fracture her elbow. He then proceeded to tell me he was going to look for a cast tech and would be back in a few hours. I let this sink it, walked around to the nurses station, chatted with Pipers wonderful nurse who told me that yes, I could tell him to come back in the morning. And so I put a note on the door and went to sleep. At 815 this morning, the overhead lights came on and I hear some man asking if I wanted pink or green...what??? He was back, so I woke Piper and she was casted up and is acting totally fine. No thanks to Mr Personality.

All in all, we are playing the waiting game. Piper should go in for the port surgery at 5ish and until then they are going to put an IV in her hand to get fluids going. She has not been able to have anything to eat since 9 this morning and is letting us know this is no good to her. Thankfully my mom is here with me and we are taking turns walking the halls...because Piper really likes when people/strangers tell her she is a pretty baby or when they smile at her. And here she has no lack of attention.

Please pray that her surgery goes well, that her arm continues to be no bother and that the chemo works without too many side effects. This kid is truly amazing...

sometimes I just dont stay busy enough.

Know why I think that? Because things just keep building up on my plate and I am just not sure how to be super-juggling-mom. I guess the first way would be to NEVER let your 7 month old lay on the bed by herself while you help your 5 year old pick out her clothes. Because if you do, that wonderfully sweet 7 month old will roll off the bed and possibly break her elbow. Or bruise it...We should find out soon. The local ER didn't see any fracture but in babies it is harder to see so CHOA did another xray today and we should know more tomorrow. ( and thanks to Jennifer and Ashley for the sweet visit Wed night at that little ER)

Speaking of tomorrow, we should be able to begin the High Dose Cytarabine (ARAC) then. Piper was supposed to start her first dose this afternoon and the subsequent 3 doses every 12 hours and then we would be out of here Saturday morning. But her CVL is clogged and they cannot get a blood return, thus no chemo yet. They put TPA in the line to break up the clot they assume is there, but so far no good. Please pray that they are able to get a blood return and the chemo started. Its a difficult drug in a high dose and I am already a little frightened by the side effects (peeling skin, fevers, diarrhea, loss of appetite, mucositis, conjunctivitis in the eyes...). The sooner we get it in her body the sooner it can work its magic and get out of her body. Also, Chad was feeling pretty icky this Monday night while I was consignment-sale-thrifty-mommy-ing. He had both girls and the next morning he woke with a sore throat, followed by a positive strep B test. Apparently this is fairly easy for adults but can be more severe in little ones. Pipers Dr was not concerned so I am not either, but pray please that it completely by-passes my sweet girls.

Well, that's all in our world. I thank you all for your prayers and please keep them up. This HD ARAC is pretty yucky and I am overwhelmed with not only that but the elbow and the CVL problem...good grief, its just alot at one time.

Happy 5th Birthday Linley Coe!

5 years ago on the 16th of February I was waiting patiently...and numbly, thanks to that lovely epidural, for my firstborn. She came into the world with her eyes wide open and still spends much of her time looking around and taking things in. She is perfect with a P and I am perfectly in love with her. I prayed when I was pregnant with her that she would be a self-thinker, independant and confidant. And she is. Much to our frusterations at times but I am very proud of her none the less. Linley is witty, smart and sweet. She is known to back talk and sweet talk all within 5 minutes. She rolls with the punches and rolls with change. She has been a wonderful light in the midst of Pipers diagnosis and I cannot imagine how I ever woke each morning feeling fulfilled before she filled my life. Thanks Miss Petunia Picklebum...you are the best 5 year old in the world.

Pyper Addyson Sellers

My heart is so heavy right now. Leukemia has taken another little girl...one that I knew and loved. Her name was Pyper and she was 3 years old. She was diagnosed at 6 weeks, stayed in remission for the 2 years of her treatment, relapsed shortly after completing, had a Bone Marrow Transplant, began to thrive and last month she went into ICU for what they later decided was an intestinal infection. She "gained her wings" as Cancer families say, at 4 this morning. Her mother said the family is stunned, tired and numb. And I am breaking for them.

When we first were in the hospital, in those first horrific hours I took a walk around the AFLAC unit. On the wall near our room was a picture of a sweet 4 month old named Pyper. This was before I was told just how aggressive and difficult to treat Leukemia is in the very young...I did not know it was rare and that Scottish Rite sees about 1 case a year. I saw this little face and I thought, surely it would be okay. If this little one can make it to 3 years old, then so can mine. She was a little face of Hope for me. A tangible, visual confirmation that some babies beat the monster that is Leukemia. I didn't know yet how hard she had struggled. How rough the road had been for her family and herself. I also didn't know her yet.

In December, I was in the clinic for chemo for my Piper when I saw her name on the patient board. My heart leaped. I was going to meet my very own Hope, My encouragement that we too, could beat this. And I did meet her. And I met up with her again during another inpatient stay. She was beautiful and quiet. She colored me a picture and smiled sweetly even though she was obviously not feeling well. Piper and I walked the halls with her and her mommy. It was then that I heard just how rough her road had been. Just how many obstacles she had faced and just how many times she had stumbled. Her mother informed me, encouraged me, understood me. Pyper still amazed me...just being where she was, was an incredible thing.

Its only been since December that I have known her family. But in this world of cancer, chemo, and uncertainty, its been a lifetime. Its as if we are in a war...patients and families become much closer in small amounts of time than in the "real world". And that is why I can honestly say that I loved that little girl. I didn't have the time that others had with her but she was my very Inspiration. Even in her short life she touched many. I would not have made it through the first few weeks without her being my Inspiration. Thank you Pyper for being yourself. You were beautiful and you are forever in my heart.

Lunch? Nah...

Some may call this Lunch, but around here its called "wishful thinking". And yet, every day I lay out enough choices for a small army in the hopes that we find that Perfect Food that Piper will scarf down and gain weight from. So far, yogurt is the only thing she is interested in off of a spoon. She likes carrots, ham and olives in small bites and club crackers as well.

Linley has never been a big eater either but I never had a problem getting her to even taste something...I think this is going to be a long struggle for us all.

Who is 7months old?

This sweet face is...

And she is amazing to the max. Not only has she completed almost 5 months of constant chemotherapy, but she has done so with flying colors. She is not interested in being a statistic.

Piper will have nothing to do with food on a spoon, preferring to eat minuscule, tedious bites of whatever everyone else is having. Or else really large, messy wads of crackers or bananas. She is fully capable of sitting alone and playing with whatever is in her reach and has begun to lean far enough that her hands are required to balance her...and then she gets over far enough that she just kind of hangs out there on her knees. I am pretty sure she will be crawling soon. She really prefers to be propped up standing against something tall so she can show off her super strong chunky legs.

She sleeps well at night and rarely during the day. By nature she is happy and contented and has the sweetest little cheeky smile with her dimples on display. Her favorite things are her sister, anything with a tag, yogurt, her sound machine, her "monkey-man" lovey and being held upside down. The last one was an inadvertent discovery...thankfully it provides her with many belly laughs. She does not like eating more than 5 oz in a sitting, napping, being buckled into her car seat, shoes on her feet or being told "boo". She has not made any words yet but she growls like a bear when she is tired or resting...along with sucking on her fingers.

I feel very blessed to be her mommy. I can hardly remember the way my life was before Piper joined our family and I am constantly praying that she will see many more healthy, happy months, irregardless of her illness.

My apologies.

My apologies for that bitter rant last post. I try to be honest but not ugly when I update this thingy but there are just some days...

And those "some days" are not usually the ones you would imagine to be the hardest. I am finding that I get unhinged over much different things lately. You would think it was all about Leukemia, because that it the proverbial elephant in every darn room around. But it's not. It's my purse dropping in the car while I am reaching for the phone. It's being 23cents short when I am checking out at Target. It's stubbing my toe. It's an empty gas tank. Its pants that are dirty when I want to wear them. Its a blasted Migraine headache when all I wanted was to worship God at church. It's all those little things. And for the life of me I cannot figure out why the little things are getting me and yet I deal with the big picture just fine.

I figured it out today and its a humbling and foolish discovery. I am expecting God to give me a golden path. I feel like "OK God, I can handle Leukemia and all its doing in my world, but I really think I deserve smooth sailing in EVERY other area". And don't you know that's not how God works? I am wanting him to bless us extra, extra in all the other aspects of my life in return for me being faithful and trusting when it comes to Piper. How embarrassing. How naive. How just plain dumb. I should not be faithful and trusting because I think that its going to make things go my way.

God is in the Leukemia's in our life and He is also in the empty gas tanks. He is both big and small and complex and simple. I cannot chose to trust Him while we journey through the next 2 years and not trust Him to either find me 23 cents or to give me patience. And I will tell you right now that I have one sweet 4 year old and a loving 29 year old who would really love it if this lady were to get her act together and be a little more patient and truly trusting.


No more bitter rants. I promise to be ugly and honest but no more bitter...

Migranes

Dear God,

I don't do Migraines. Thanks for showing me that I definitely need to get more sleep and drink less caffeine, but couldn't you let me know less painfully? Because it really is humbling to sob on the couch until my mother comes home and takes over and sends me to bed. On the flip side, thanks for that mother. And thanks for the wonderful worship at church that I vaguely remember. And thanks for guiding me home with less that perfect vision and less than pleasant daughters in the back. And so I do not do Migraines. I thought maybe I hadn't told you that I do have a limit to my ability to "just keep moving, just keep moving" and apparently a Migraine is it.

Thanks ever so much,

Susanna

P.s. I also don't do Leukemia and sassy 4 year old girls but I guess I forgot to let you know that.