Monday, December 28, 2009

Martin/Needham/Grant family pics







thank you to Mr. Don for taking these wonderful pictures of my family! As one of 4, geting us all together for holidays and stuff gets harder and harder. Gabriel and his wife Samatha live nearby and are expecting their first baby in June. Hannah and Nick live way up in New Hampshire and were only here for a few days. Nathan is in the Army and was not here last Christmas because he found Iraq more interesting and left us. Having all my siblings here and well was grand. Having my girls here and well was a blessing that I never thought I would ever think so big.



So here's to us Martins/Needhams/Grants....I love you all.

Christmas Day Continued
















Christmas Day

















See? More matching. And Daddy bought Mommy a flip camera for Christmas and there are many videos of the girls on there in their 2nd matching Christmas outfits...I am just clueless as to uploading that.

We actually got home late Christmas Eve and put the girls in their jammies and took lots of pictures and its a good thing too. Piper ended up sleeping through all the present opening and did her own thing around 4:00. Linley loves that big old giraffe...it was given to her by a friend of Chads and shes been hauling it around and lounging on it since then.

Apparently I need to post another post in order to add more pics...I need a tutorial on blogspot.

Christmas Eve with the Needhams/Wilsons











I am going to attempt to catch you up on all things Christmas around here. I am certain I will forget something and kick myself later, but here goes...








We spent Christmas Eve with Chads side of the family. Aunt Rhonda is a wonderful cook and hostess and we always enjoy spending time with her and the family. She and my mother-in-law made some yummy food that I was not required to help cook. Thank you so much for giving me the chance to spend time with the girls and not frantically cooking! We had a gift card exchange and lots of visiting and a wonderful time was had by all.
And yes, the girls are matching. Yes, I am "that mom" and yes, Linley loves it.

Thursday, December 24, 2009

Christmas Eve

Yesterday, my sister and I trekked to Atlanta to get a platelet and blood transfusion for Piper. It takes at least 4 hours to have this done and I was very happy to have company. Not that Piper was any trouble, in fact she is the most easy-going little one out there. She is sitting up without help for a few minutes and rolls all over the place. Not a big fan of being spoon fed, she would much prefer to gnaw on a pretzel or banana. Once again, I am not being the most conventional parent but alot of the mommys of children dealing with cancer have become used to feeding their children doritos for breakfast and milkshakes for a midnight snack in order either get yucky meds into little bodies or to feed sicky/picky eaters around chemo treaments. I am sure we will be able to deal with eating issues down the road.

While we were at Clinic, I was able to meet another little Pyper. I have heard about this sweetie since my Piper was diagnosed. Big Pyper was diagnosed at 6 weeks and has had quite a long journey in her 3 years. I soooo enjoyed meeting her mom, Mandy and finding another mom who has already been through all of this. Infant ALL is so differant and uniquely treated that I now only know of 2 others who have walked this path...it is so scary sometimes but I am thankful for both the Karasicks and the Sellers for answering questions for me.

Linley is wonderful. We took her and Piper to North Carolina to a party on the 22nd and Linley had a blast. She loved being around so many other kiddos and I love watching her play with the children of my own childhood friends. You know your getting old when...

I am making a point to take my camera with me for the next few days. No need to keep my girls sweet faces to myself!

Sunday, December 20, 2009

Home again.

Thank you so much, not only for the words of encouragement about my parenting style but also to those who offered to visit and help me out. Piper and I were able to go home on Tuesday and barring any fevers, should not need to admit until phase 4 begins sometime in early January. She is still on prevacid and diflucan daily, bactrim on the weekends, dexamethasome steriod daily and the nupogen shot nightly. Combine that with Linleys nightly growth hormone and daily levothyroxine for her thyroid and really, I should have been a pharmacist. We are well. Piper is rolling all over the place but prefers to be sitting up.
We went to the clinic on Friday for chemo and it was so nice to be in and out and not walk across the way to be admitted. Piper will not have any chemo until the monday after Christmas and that too will be a few hours and then home again. The rest of phase 3's treament is oral and can be done at home.
Linley has been battling a cough. Nothing more but she is keeping away from Piper, who thankfully has not had her counts drop too much. Please pray that Linleys cough stays just that and does not develop into anything more. She is such a tough 4 year old and has only been truly sick 2x in her life...amazing!

I hope that everyone has a very merry Christmas. Around here we celebrate Jesus' birthday and I pray that you too know Him and celebrate with us. He loves us so.

Sunday, December 13, 2009

Im a good mommy, promise.

I have a very fussy and uncomfortable baby on my hands. And I am alone...I sent a text to Chad telling him that I would indeed like some "company" ( or someone else to do laps around Aflac with Piper) and I havent heard back yet so I am beginning to tune Piper out. The nurse has given her some adavan (sp) to help her to calm down and hopefully, sleep but so far I just have a 5 month old staring at me from her crib across the room.

Want to know how I calmed her down this morning after one of her fussy jags? I gave her a plastic bag. Yes, a walmart plastic bag. The ones that say "do not allow children under 75 to play with this so that they dont choke and unattentive parents sue us silly". She loved it. ( And I did tie it up in multiple knots and helped her hold it) And I was remembering another lapse in my mothering mentality, that thankfully I was able to common sense think my way out of. Ready? When Linley was younger I used to give her baths alot in the morning while I was putting on my make up or doing my hair. I am a multi-tasker to the extreme and realized this one day when I was watching her, already washed up and happily playing in the bubbles. I thought "hey, I could blow her hair dry while she keeps playing and it will save me a step towards getting us out the door this cold winter morning". Thankfully I DO know it is beyond stupid to use a blowdryer in the bathtub so I waited until she was played out to first, get her out of the bathtub and then proceed to dry her hair. It was at that moment and again today with Piper that I realized that I am the reason manufactorers put warnings on everything.

Please someone tell me that they havent also had temporary stupid mothering thoughts...I swear I am a wonderful mommy.

Saturday, December 12, 2009

Phase 3

We have now begun Phase 3 of 4 phases of the most intensive chemotherapy treatment. Half way through the roughest part and Piper is still in remission and doing well. We were at the CHOA clinic yesterday at 8am for a triple interthecal lumbar puncture, and doses of two chemos called Danuorubicin and Vincristine. The triple interthecal targets the central nervous system with 2 types of chemo and hydrocortisone. The nurses have her sedated while they do this and she did wonderfully as she always does. We were supposed to go across the street to CHOA afterwards but we had to wait for a room to be made available...Aflac only has 20 and sometimes it becomes a very full house. We didnt make it over here until 6:30 and Chad spent the evening with me settling in before leaving to sleep some before work today and being Mr Mom to Linley.

This morning came quickly, although we both slept well. Piper was up at 7:30 and has been a little fussy at times. She hasnt been napping very well, but the nurse gave her some benedryl to help her rest. And we are (always) having problems with her catheter. She leaks no matter what, every time. They put it in her yesterday while she was sedated while doing the triple interthecal because Daunorubicin is very red and very strong. Her urine in her catheter bag is pink as are her tears...we want as little of that on her bottom as possible...and it is such a pretty little bottom too. Pray the catheter quits with the shenanigans and hold up. She had a dose yesterday at clinic and another today at noon. Hopefully it will be cleared out enough tomorrow to take it out without concern of harm.

I am tired after just one night here. My best friend wanted to come help me out this weekend but had to cancel at the last minute because of a cold...and I miss her. Its rough being up here but at the same time I feel very cared for. And its not like Piper is allowing me to sit around and think about anything for long anyways. Apparently they have had 3 new leukemia daignosis in the last 4 days. As a "weathered and experianced" mother of a leukemia child, I feel so much for them. I was walking with Piper (as I do all day, every day) and I passed a grandfather in the hall crying. He was trying to collect himself but was failing and as I rounded the corner and walked away my heart began to break for that family and began to cry. I hope none of you know the pain we feel. The way your whole world becomes derailed and you have so many questions and so few answers and children at home who miss you and bills needing to be paid and surprisingly at some point it becomes do-able. And the only way to get there is to muddle through the first few days and weeks and pray and hope that other people love you enough to take care of the details. I cannot explain how sad it is. When I watch new patients and families go through this it brings it all back and I cannot believe we have made it. But I am not foolish enough to think that it was us alone who did it. Its all the prayers and its simply time. Ive said it before but I will not make it until tomorrow without your support and my God. Thank you so much...and when you pray for Piper pray for the new patients and their families.

Wednesday, December 9, 2009

Gingerbread Houses require too much attention to detail for me








As you can see we made a gingerbread house in the time that Piper and I were home with Linley this week...and as you may also see, apparently gingerbread house making is not one of my skills. Notice the flat, modern, california style roof? Yeah, thats not on purpose. Somehow I didnt notice the size differance with the walls and the roof. And icing is tough to restick. But Linley didnt notice so we were good. Not that Linley noticed anything in between all the candy and icing she was sneaking. And that is my sweet (happy/healthy/wonderful) Piper sitting so happily watching me and Linley, she was also a fan of icing.

We admitted today back to CHOA (Childrens Healthcare of Atlanta) and I will update this tomorrow with all of that information. As of right now we are good and happy.

Tuesday, December 1, 2009

no leukemia around here...

We are home. I had a blessedly busy night doing typical mommy things and am now sitting and waiting for Chad to get home from work. From the outside it looks so normal...and that is how I am going to pretend we are for the next 10 days.

Piper is doing wonderful and we are home until next Friday, if she continues to do so well. I am loving the chance to love on a well, happy baby. Its been a slow slope downward through all of this chemo and treatments. One day Piper is doing fine and then day by day she begins to get quieter, cuddlier, less interactive. I am almost glad that we ended up in the ER and hospital last week because her counts are going up, almost to normal, and she is acting perfectly fine. Smiling, laughing, eating...no diaper rash or puffiness...If we had not been admitted then her counts would not be so good and she would have spent last week feeling icky from the previous weeks chemo. As of right now she has had no chemo for 11 days and you can tell.

So for the next 9 days I dont want any talk of Leukemia around here. I intend to live in my fantasy world of healthy little kiddos, normal family dinners, Christmas prepping and maybe, just maybe, a date night with the man I love.

Monday, November 30, 2009

Big changes today. Piper was taken off of the morphine drip...we still have a 'script for it if she needs it in the night but otherwise we are hoping she continues to feel well enough to not need it. She has also taken 2 , 2oz bottles today and I am shooting for another before bedtime. Piper is producing a ridiculous amount of saliva because of the mucositis and that seems to bother her while taking the bottle instead of it hurting her. As soon as her counts come back up a little, she is morphine free and she is taking bottles happily then we can go home. Only until next Monday but still...if she gets to come home she should be feeling "normal" which we havent seen much of in over a month.

She has been in a wonderful mood last night and today. When I laid her down to sleep last night she wiggled around as usual and then kept poking her head up and smiling at me and the nurse. I would tell her "go to sleep Piper" and she would smile and wiggle...and pop her head back up. Over and over we played this game until she was totally worn out and slept like a charm. She really is enjoying our walks now that we have her sitting up, looking ahead in the stroller instead of hanging out in the carrier looking at the ceiling. And she has begun to roll not only from tummy to back but back to tummy...and gets all tangled in her CVL while doing so. I dont mind a bit.

Linley came and visited me last night with my mom. She is such an incredibley sweet girl with such a stubborn streak. I prayed when I was pregnant with her that she would be independant and not worried about the opinions of her peers and I have to say so far so good. We did some crafts and coloring and laundry and ended the evening by her showering (by herself) in the shower here in our room. This is uber-exciting if you are 4 years old. Not nearly as exciting when you are 28 years old and there are constant streams of nurses and therapist and doctors coming to visit. When she left she was wearing a nightgown, my socks, cowboy boots and a sparkly hat. She left me with a smile on my face for sure.

Sunday, November 29, 2009

Surely a 530am ramble was in order.

It is 530am and I am wide awake. I have had numerous nights that I was still awake at 530am doing something very important like facebook games or washing the walls while pregnant with Piper but usually this time of the day never sees my face.

But we have an incredibly sweet nurse who is also incredible loud and Chad and I are sharing an incredible small couch/bed so I had to get up and take a walk. When Piper woke me up letting me know she was not enjoying the noises the sweet nurse was making I had the same waking up thoughts that I have had every morning since Sept 16th...and then I realized that its getting easier. When I wake up I still have a minute of disorientation and "what the hay-day" is going on but no longer that sick, sinking feeling. I still want to know what exactly has happened to my simple little life that I so took for granted but it doesnt bowl me over. This is a good thing.


Piper is doing better every day. She still has a "strider/stryder/striter" (not certain of fancy medical spelling) in her throat. This is the swelling and redness as a result of the musositis as a result of the HD Methotrexate. It is only noticeable when she is asleep and really, between her and Chad's snoring we have a regular orchestra going on in room 187. She was able to take 2 bottles yesterday...only one and a half ounces but its all about baby steps. We hope she will continue to take a little more each time and get off of the TPN...she must be eating on her own in order for us to go home. Her cultures still are normal. Her fever is totally gone and her both her BP and heart rate has begun to regulate. Her little bum has NO rash and this is the first time since she was diagnosed that she has a normal looking hiney. The next phase of chemo will probably be held off for another week so as to get her counts back up where they belong. Honestly I am ok with that because she is beginning to be back to her sweet, alert self. I dont often get a chance to treat her like a normal baby but really relish the times I do.

Friday, November 27, 2009

11/27

Piper went to bed at 10 last night. Chad and I crashed at 110:30. At midnight she had vitals and a breathing treatment. At 230am she fussed herself awake and promptly fell back to sleep when I picked her up and kissed on her. At 4am she had more vitals and another breathing treatment. (415am her pulse monitor went off for no reason.) And then #1 of 3 antibiotics. #2 of 3 antibiotics at 5am. (5:30am her pulse monitor went off for no reason)#3 of 3 antibiotics at 6am plus blood drawn for daily labs. At 8am she had yet more vitals and another breathing treatment (at 830am her pulse monitor went off for no reason)...then she slept until she woke me up at 11. Yes, 11am. It was good...but not necessarily a restful night.

Other than that she seems to be feeling better. Her counts are slowly but surely coming back up and with that, her mouth is slowly but surely healing. Still no eating and there was brief talk of a NG tube down her nose to fill her up instead of the IV nutrients, but as of right now its been decided against. She has happily played in her bumbo a couple times today and ALMOST smiled at us while playing.

Pretty uneventful which is wonderful. There is a thing they do here that is called Beads of Courage where each color of bead and shapes and types means something different on this leukemia journey. The nurses and us keep a running tally of all the things that Piper goes through and we add each bead that correlates with what Piper has gone through and they hang it on a lanyard of sorts off of her IV pole. Red for transfusions. White for each chemo. A textured one for a "bumpy" day...we spent some time this evening getting caught up. I look forward to showing Piper all that she has gone through when she is older...its an amazing way to remember what she has accomplished.

Thursday, November 26, 2009

Happy Thanksgiving

Another good day here at Childrens Healthcare of Atlanta. We had alot of fun plans for this week and today and nothing happened the way I wanted...and yet, we still had a wonderful day. Piper slept through the night, quietly and peacefully, even through breathing treatments and vital checks. That means that Chad and I got our first good nights sleep in days and woke feeling so refreshed. We were able to join the other families in the Aflac Unit for a homemade Thanksgiving feast made by the volunteers of an amazing organization called Cure. This organization brings dinner to the floor every Thursday night and each special occasion they can to ensure no one here is alone or hungry. Alot of these families are very far from home or have no one available to help out...I cannot imagine doing this alone.

Piper is still bacteria free and fever free. Her heart rate is slowing down on average and her blood pressure as well. She is still on TPN for nourishment but when I saw her attempting to suck on the syringe of medicine I thought to try giving her formula in a syringe and sure enough, she loved it. Of course, it was more the yummy taste because she hardly ate any, but the look on her face was worth the tediousness of it. Her lips are a little less swollen and she is able to close her mouth a little bit although swallowing and sucking are painfull. She was less tired and irritable today and we were able to get out and about some, which she always loves to do. Maybe its all the attention she gets wherever she goes in this hospital.

My mom and dad came up to CHOA to stay with Piper while Chad and I took Linley to the tree lighting at Lennox Mall. This has been our thanksgiving tradition for the last 3 years and we love it all...and my best friend Miriam was able to join us so that made it all the more fun. Linley loves going and being out and about and tonight was no differant. We saw Mandisa and Josh Turner perform some Christmas songs and saw some beautiful fireworks after the tree was alighted. For a minute it was simple to forget that we were missing such an important piece of our family but we look forward to going again next year and chasing after a very busy 16 month old and 5 year old.

All in all it was a good day. Any day I get to see both girls is no longer just another day for us...its a blessing and I am trying to keep that in mind.

Wednesday, November 25, 2009

11/25 pm

As of right now things are quiet. I am now a big fan of morphine. I would really appreciate it if the nurse were less ethical and would let Chad and I in on the sweet peace that Piper is feeling, but I am still happy that she is doing so much better.

There have been no growth on the cultures for 24 hrs...YAY! That means that, although the cultures are watched for 5 days, that it probably was not a bacterial infection. A bacterial infection would mean lots more antibiotics and side effects and worse. Since our arrival at the ER yesterday she has not had a fever, praise God. Right now Dr B is thinking she spiked the fever as a result of her mouth sores and ulcers both on her lips and down her throat. She is not able to suck a bottle down so tonite at 900 she will begin TPN, where her fluids have nutrients and fats in it so she is still not only hydrated but nourished. I am still attempting to give her formula and we hope that she will take it soon and not be on TPN for too long. Also, because of her throat being inflammed and red she has been given breathing treatments every 6 hours. She is not having difficulty breathing but sounds like she is wheezing. All of this plus her being on a constant low dose of morphine is making her a very quiet and contented baby. She is fascinated with her fingers and will wiggle them together as if she is plotting an escape.

Piper was able to meet her Uncle Nate tonite. My little brother Nathan has been in Iraq for a year and was finally able to see her when he showed up here at the hospital tonight. Linley is very impressed with her Uncle Nate as well...but he is 6"5 and can reach lots of things no one else ever could and this makes him "super neat".

We are here a little longer and Dr B said that they will probably push the next phase of chemo off from the 30th of Nov to the 7 of Dec. And hopefully we should get a few days of quiet at home while we wait for her counts to get normal enough to drop them back down with more chemotherapy. So all in all, today has been alot better than yesterday. Please keep praying that we will continue to see her fight this off. We had a good conversation today with Dr B, who is her primary pediatric oncologist. We always expect to hear the most honest truth from him and he was very blunt about being so happy with how well Piper is doing with treatments. He said that putting chemo off for another week is normal, even expected, especially after such intensive medications as HD Methotrexate. I asked him tonight if the statistics for a cure for Piper went up as she aged and he said in essence that with such small children the longer they could keep them in remission the better the chance of cure. He said that research showed that small infants who could stay in remission for the 6 months of intensive chemotherapy would have a much better chance at a cure. That recent studies show if leukemia is going to come back in infants it usually does so early on in her treatment. That is why for her age group the treatment is so incredibly intense for those important 6 months, as compared to older children who are treated much more lightly but for longer. So keep praying that her little body stays in remission and that these ridiculous chemicals and medications do what they are intended to do.

11/25 am

Last night was rough. It is assumed that she has the same ulcer-ish mouth sores all down her throat that she has on her little lips. She doesnt want to drink anything but if the bottle drips formula down her throat she calms down a little. She was getting morphine every 2 hours for her pain and would immediatley calm down and sleep a little only to wake up again after it wore off and we would give it again. Today, the nurse has suggested a lower dose of morphine on a constant drip...Its so scary what I am allowing into her sweet little body but she is so inconsolable otherwise.
We still have to wait until this evening or so to hear if any bacteria has grown on her blood cultures, otherwise we think it is probably a viral ick. They have ruled out pneumonia and a UTI , by a chest xray and catheter check, so that is good. For all we know she is still feeling the impact of the HD Methotrexate for 2 weeks and this is only a side effect. Thankfully her fever broke in the ER yesterday and hasnt gotten over 100 since we made it back to the Aflac Inpatient Unit.
So continue to pray. Linley was a little confused about why we were leaving after we had told her we were home for Thanksgiving...and we had planned alot of fun stuff to do. She is with my mom and I know that is good hands but I literally ache to be with her. We are supposed to begin Phase 3 on Monday and I am uncertain as to how this will effect that. I guess we have to wait to see what her cultures show up before we can plan things. As if we can ever really plan things here anyways.

Tuesday, November 24, 2009

Back to the Hospital.

Well, we thought we would be home for Thanksgiving, but Piper had other plans. This morning squirt woke up feeling a little warm and fussy so we did what any parent of a 4 month old little girl would do...give 'em Lortab and off to lala land. Ok, so most parents would not do that, at least I hope they wouldn't, but Piper is a special case. As the day went on her little body got hotter and hotter and she hit a temperature of 38.6, that's Celsius and if I had my cell phone I could give you the number in farenheit to the 5th decimel place but we will call it 101.5 or greater. The doctors told us to get to the emergency room at Scottish Rite, so I took off from work met Susanna and off we went. Her temperature when we got here was 102.9 or 38.9 celsius, we are learning the metric system throughout this ordeal, and we spent a few hours in the emergency room before we were brought back to the Aflac Inpatient Unit. Piper's blood counts were really low as well meaning her body could not fight off any infection or virus that she may have come in contact with so we will be here for at least a couple of days, which means for Thanksgiving too, until her fever goes away and her counts come back up. We are still waiting on the results of her blood cultures to see if she has a bacterial infection which take about 24 hours, so tomorrow afternoon. There is always a chance we could come home for Thanksgiving, but the odds are looking pretty slim. Well, thanks to all of ya'll who have been praying for the little booger adn watching our big booger when we can't. We are very appreciative to all of the people who are supporting us through this time in our lives. Please keep little Piper in your prayers.

Chad

Monday, November 23, 2009

monday 11/23

I know it is Thanksgiving week and I truely do have alot to be thankful for, but I am attempting to be so very honest through this Leukemia journey. And it stinks. It is so very hard. So much harder than you should ever have to imagine or go through. Piper is now 4 months old and is beginning to have such a personality...good and bad. She has many times of fighting sleep. She wants to be held so much. She doesnt smile or laugh much anymore. I am having such a hard time knowing the differance between her genuinely not feeling good and just being a moody/fussy baby. I want to console her when she is in pain...I want her to develop and grow as normal as possible. And its just not going to happen. I want to begin her on solids but because of her mouth sores, I dont feel like it is wise. I was told she could have food aversion issues because she will correlate "food" and "pain", not good. I often feel like I am re-doing those first few weeks at home...cry...catnap...eat small bottles...hold...repeat. She is such a sweet baby but I am struggling with feeling like I am missing out on so much. I know in the big scheme of things it will not matter. That I have bigger issues to deal with than whether she eats solids or a 3 oz bottle...I am daily fighting with her for her life. I just, selfishly, wish for her to be a typical 4 month old baby girl.
And after all of that I have to say she is doing pretty well. We were able to go home last Thursday until the 30th of this month. As of Thanksgiving day we will be done with 2 of the 4 phases that make up the most intensive time of her chemotherapy and treatment, both medically and also with us physically being at the hospital so much. To say that Piper has blown through it would be correct. Not without side effects but with minimal side efffects, especially compared to what other patients go through from the beginning. I feel very held by God...thats the only way I can explain it. If only I could control my human jealousy of others, and focus on what I do have.

Thursday, November 19, 2009

Thanksgiving Feasts and fancy faces.


Check out Linleys hairbow if you can...One of my moms super talented friends makes Turkey Hairbows out of ribbon and googly eyes. You can only imagine how sweet it looks in Linley hair...and you will see more of them on Piper on Thanksgiving!



Just a quick note to let you all know that Piper is doing just fine. She is on day 4 of 5 of the Etoposide and Cyclophosphamide (no, I dont have this med memorized, I have it written in my notes so not to misspell it.) So far so good...no side effects or reactions except a lack of desire for sleep but frankly I am pretty sure it is just Pipers body and mind realizing that Mommy will hold her if she is loud enough. She is perfectly happy while awake and looks wonderfully, edibly chubby. She is such a little bundle of joy...especially after a good nights sleep. (for mommy and her)
Linley had her preschools Thanksgiving Feast today and Chad and I were both able to make it. They sang songs and ate yummy food and ran around like wild children...what a lovely and busy time! Linleys teacher and I were able to sit down and chat about how Linley has been doing, both emotionally and educationally and Mrs Dawn feels confident that Linley is doing well in every aspect. What a relief to hear, especially when I so miss out being a part of her day to day life....But just another example of how I still feel the Lords hand on all of us in the midst of the junk.

Tuesday, November 17, 2009

11/17 (pm)


We were expectantly sent home this past weekend because Piper was doing so very well. But as we came home and settled in we were seeing just how bad she felt. At some point Friday night she developed sores on her lips. Because of this she was not able to sleep very well (shes a tummy, hand on her mouth sleeper). And by not being able to sleep very well I mean hardly at all. She wanted to be held and to do alot of cat-napping but blessedly no fevers and she continued to drink 3oz every 3 hours which is wonderful for her.

We admitted to the hospital yesterday and she got her chemo last night...late last night. All went well and she is perking up alot. Her lips no longer have sores on them, her cheek is healing up from last week, her bum looks better than it has in weeks and she is very busy rolling over and talking to us. Even now when she should be asleep. Last night she continued the trend she began last week of waking up 7 or8 times throughout the night resulting in one super exhauseted mommy at 5am and finally I gave in and had the nurse give Piper some Lortab to calm her little anxious body down and we both enjoyed a "restful" nights sleep.

This past weekend, my mother watched a pitiful Piper while Chad and I took Linley and some friends with us to the Thrashers game. We had a wonderful time and I was impressed with how well both girls did! Especially on the Marta train there and back...Linley kept telling us "marta is smarta"...silly girl. I miss having both girls with me but I know how much Linley enjoys having mommy and daddy to herself. And we sure love being with her.

Monday, November 16, 2009

Okay today.

Chad and I have been feeling a little bit stressed out here lately...not stressed to the max, because I am fairly certain I no longer have a stress capacity, but stressed none the less. And so this morning after dropping Linley off at preschool (which I miss doing so very much) we took Piper out for breakfast on the way to being admitted for 5 days of chemo. As we were sitting at a light I turned in my seat to look at Piper and saw this

EVERYTHING IS GOING TO BE OKAY

written in huge words on the side of a random building near a fancy-smancy mall. Totally out of place and for a minute I thought I was seeing something. ( along with losing my low stress capacity I am also slowly loosing my mind) But no...it was there. Loud and Clear. And I tuned back to Chad and pointed and we smiled and talked about how it hit home.

And now my sweet husband has left the hospital and calls to tell me that on his way out of the parking deck he was waiting in line behind a BMW with the exact same phase in the exact same font and it was just there for us. Why do I know this? Because I never get to hear God in the awesome ways others do through dreams or visions. Or by reading His Word and gaining some amazing insight. Maybe I am too hurried to find God where He is but I have to say with all confidence that He always finds me. Sometimes He even writes things down...letter by letter to let me know that Everything Is Going To Be Okay. Not perfect. Not easy...but Okay. And I am Okay with that.

Friday, November 13, 2009

sweet miracle baby

Just a quick note to let you guys know that Piper is continuing to do wonderfully. We have completed both weeks of the HD Methotrexate. We were forwarned of many side effects the first go-round and then this last Monday when we admitted the Nurse Practitioner, with a serious look, told me that this week would be difficult and that we would not be going home because of the "inevitable" diaper rash, mouth sores and/or fevers which can trigger infections. I spoke to the father of another little boy who did HD methotrexate last year and he said that his son had such bad mouth sores he ended up in ICU...on day 5 of the first dose. While my heart breaks for this little guy (who is cute as a button), I cant help but thank the Lord for protecting Piper from so much already. My sweet girl continues to laugh in the face of side effects...her diaper rash looks BETTER than it did when she went in on Monday. Her mouth is a little red but no sores or pain while sucking. And she has still not spiked a fever. Phases like "miracle baby" and "rock star" as often heard in our room.
Because of her flying through this week we were allowed to bring her home AGAIN until Monday. And last night, Linley was allowed to sleep over at the hospital with Chad, Piper and myself. Not much sleep was had but the little I grabbed was wonderfully blissful. And for those of you who are local, Chad and myself will be doing our interview on Star94 on Saturday at 10:15 so listen out for us if you can. If you are not in the Atlanta area I am pretty sure you can hear us on the radio but the how-to's are beyond me.
We go back on Monday at 11:30am after we drop Linley off at preschool. I have asked some friends and family to join me at the hospital each day for support and other family and friends to help me out with Linley care after preschool and before Chad gets home from work. If you are interested in helping us out please let me know when you are free so I can keep a running tally of who is available and when. Keep up all the prayers...I have felt them so strongly this week.

Monday, November 9, 2009

Rock on 80's




Not much good came out of the 80's as far as clothing or in some peoples opinions, music. But I have seen all the preteens and teens rocking the 80's wear again...from sideways ponytails to neon pants to ripped shirts to white lined sunglasses. And I am not impressed. Until my little girl put on her very own pair of legwarmers and I have to say that those little chubby legs are just edible in them. Dont you agree???

On a more serious note, we were admitted to the hospital today. Pipers second round of HD methotrexate and Leucovorin began tonite and this week should be a rough one. The Dr has told us that she will "inevitably" get mouth sores, bottom breakdown and a fever. We, of course are praying that her little body keeps trucking along with as little complications as possible. Today we got a visit from some of the Atlanta Thrasher hockey team and Piper gazed very adoringly at "Thrash" (the bird mascot). Lots of pictures were taken and we were given 6 tickets to the game on Sunday! Very exciting! Also, apparently our family (Chad and I) were nominated to do an on air interview this weekend for a local radio station called Star94. They are doing a radio-fundraiser for Childrens Healthcare of Atlanta and I think that Chad and I are going to do it. We will let you know more when we know more but are excited to spread the word about what an amazing hospital this is and what wonderful nurses/doctors/staff they employ.




Saturday, November 7, 2009

Remission-Achieved

There are now officially no leukemia cells found in Pipers blood marrow. Yes, remission has been achieved and we are very, very happy to have this happen so soon. Unfortunately, we are still in for the rest of her 2 year treatments hoping to kill any leukemis cells which are hiding or not fully developed. She completed the first round of her HD Methotrexate/Leucovorin this week and was sent home until Monday when she is to return to the hospital for the exact same routine next week, although she will probably be hospital-bound from Monday (day 8 of phase2) until Day 28 (the end of phase 2). She did not deal so well with this chemo and we are thinking she is getting some "mucositis" which is ulcers and sores in her GI tract or her throat...she is fussier than usual, drooling alot and is not wanting to eat much at all. As of right now I have her drinking a 2oz bottle every 2 or 3 hrs or so and she is doing good with that. I am even wakening her in the night to give her a small bottle while she is in a dream-like state and eats well. I am glad we will be returning to the hospital on Monday and hope that she will be in good enough shape to begin chemo this week. At this rate, we will be at the hospital for not only Thanksgiving, but for next week when my "little" (6''4) brother returns to Ft Benning from a year in Iraz with the Army. I was so looking forward to seeing him get off that plane and now I have to wait until he makes his way to Ga...but I cant wait to hug that ridiculously tall kid.

We are very happy about Pipers remission but its a mixed happiness. Because of Pipers MLL gene, the chances of her beating the Leukemia if it shows up again is very slim. Finding out about her remission, while WONDERFUL news is almost anti-climatic. My dad asked if it was similar to an athlete who won the biggest competition out there and retires to his room and begins to worry about whether he can win such a big thing 2 times...and yes, that is exactly how I feel.

Thursday, November 5, 2009

.11 and .10 are a world of differance

Piper has finished her HD methotrexate for the week and is doing wonderful. The Leucovorin (drug that I can usually not remember) is doing what it is supposed to and her methotrexate levels are down to a .11 and she can get a much needed blood transfusion (and subsequently go home until Monday a.m.) once they drop to a .10. Yes...not much of a differance but enough to keep us here for the night. Her bottom worsened until I nagged the nurse to give her either another sized catheter or to fix the one she had, no reason to have an angry diaper rash as well as a catheter...right?
As of now, her bottom is healing up and she is fussy because she needs blood, but we are on a good path. I have spent the last 4 days walking the halls over and over...once my sweet Piper is healed I should be down 20 lbs and with some wonderfully sculpted arms.
I have felt a little more emotional the last few days. I think I am due for a good cry, but who has the time??? It can be so overwhelming to be here in the hospital with so many sad stories around us. It doesnt help that they put me and Piper way, way in the back of the unit so that I can neither see or hear anyone...I must have ticked off the wrong nurse or something. I just want to get these next 5 months over with and defeat this horrible disease.

Tuesday, November 3, 2009

phase 2-day 2

Yesterday Piper was due at the Clinic (Across the street from the hospital) at 830 am...we live about and hour and a half away so we were up much earlier than any of us what to be, plus Piper was not able to have anything to drink after 2am to prepare her body to be put under. When we arrived at the clinic they prepped her for a LP (lumbar puncture) and reminded us that while she was under she was to receive a triple mixture of chemo that targets the Central Nervous System. She was also to have a catheter put in as an effort to keep the urine off her bottom when she received the High Dose Methotrexate last night through this evening. And most important to me, they were taking a sample of her marrow to see if she has achieved remission yet. Remission does not mean Cure. Remission means they do not SEE any Leukiemia cells but know that they are "hiding" out somewhere. The example they gave was like that of a iceburg...they are killing off all that they see and keep doing the treatments for so long (2 years) to attempt to kill off what they cannot see yet. Still, to acheive remission is the first step on our way to curing Piper.

Right now she is asleep and the nurse just took her off the HD Methotrexate. Pipers diaper rash worsened because her catheter seemed to be too small and a little bit of this crazy chemo in her urine made her bum even more red. Ahhh...and Chad and I had just gotten it to begin to heal up. The nurse changed out her catheter for the next size up and hopefully that, along with mega doses of sensi-care should keep it from becoming even more ugly. Tomorrow she gets a differant type of chemo, the name of which I can neither pronounce or spell. It apparently counteracts the HD Methotrexate after 24 hrs and may allow us to be home for the weekend if it all clears out of her system quickly. Or we may be here non-stop for years...good luck planning anything with us for a while.

Its been a long, tiring day made a little nicer by my wonderful father not only visiting but buying me lunch at Moe's...I am easily made happy by mexican food and good company.

Friday, October 30, 2009

Park/Lake/Zoo











I love fall. I love my family. I love being outdoors and so...we spent the afternoon yesterday at the park/lake/zoo in town. It was wonderful. Linley was overjoyed to be busy with us and Piper loved the colors, sounds and mommys shoulder. I wrote about this before, but it is sooo easy to forget that Piper has Leukemia. We spent the whole day running errands, eating lunch out and then the afternoon outside, and never even thought about Chemotherapy, being away from one of the girls at a time or what next Fall could be like. To anyone watching us we would have looked so completly "normal"...And I guess we are, at least the new Needham family normal.





Thursday, October 29, 2009

Another week at home


Linley and Piper...or "mini-Susanna" and "mini-Chad" as a friend calls them.

Well, we are not back in the hospital as expected. When we went on Monday morning, Pipers blood counts had dropped again and they cannot begin the next phase until she is up to a certain level. So we are home again for another week and while I most prefer to be home with my 2 girls and husband, I do want to get going with all of this. We know that the first 6 months are the most intensive and important and I just want to get it all over with. That said, the extra week at home couldnt come at a better time. Linley is out of school for fall break so we are able to spend even more time together. Halloween is Saturday so now I get to have both girls to go trick or treating with...pictures will come of them in their respective costumes soon. And Chads birthday was yesterday so we were able to celebrate as a family and still squeeze in a Date Night last night for me and him. Wonderful!







Pretty much Piper is naked unless we are in public. The air is the best for her bum but just in case we have to cover her up we have a wicked mixture of neosporin, desitin maximun relief, A and D ointment and some perscription stuff to ward off a yeast infection. I can now add pharmacist to my newly acheived "nursing degree" and "diapering pro of the year".



Linley as usual is rolling with the punches. She is an incredibly flexible 4 year old and I am so blessed to have her sweetness in the midst of all of this new, sometimes chaotic life. As some of you know she is Growth Hormone deficient, meaning her body does not produce the hormone required to grow naturally. She has the growth hormone injections each night and since beginning last November, has shot up and is now in the 2% for both height and weight. Unfortunantly, her insurance dropped her GH coverage about 3 months ago and even though we have jumped through all of the hoops they asked us to, we have yet to receive a new shipment of the medication. Please pray that it gets cleared soon.







We are still praying that God heals my sweet Piper. When you look at her she is such a normal 3 month old, its hard to remember that there are life-defying cells running through her veins. And being at home makes it so easy to forget the battle we are faced with...which is nice sometimes and disappointing sometimes when we inevitably are reminded of it.

Thursday, October 22, 2009

Our Tuesday...by Chad

Good afternoon. Piper has been home for almost a week now and is doing awesome! She is such a little angel and a joy to be around. For those of you who have not seen her and heard her laugh you are missing out on some of cutest cuteness this world had ever seen. Tuesday was to be our first visit to "the clinic" which is directly across the street from Scottich Rite hospital. We were headed there for a shot of chemo treatment for Piper. On the way a person of questionable intellegience left a sizable piece of concrete in the middle lane of I-285 west, which after traffic thinned enough to reach speeds over 50 mph quickly found the front of the vehicle we were traveling in. I would say it "quickly found the front of 'our car'", but I can't because the vehicle in question is not fully owned by said driver, yet. So...after the "hunk" of concrete found "our car", it smashed into several pieces and also found the cover to the transmission pan that houses most of the fluid and the filter for the fluid. Once I realize we are leaking something and am able to get to the side of 285, I exercise self control and only drop the (*insert prefered expletive here)-bomb 3 to 4 maybe 5 times. Now that we are stopped, a large pool of transmission fluid is pooling in front of "our car". So my good friend James picks us up and takes us to our appointment and tells me it is not that bad and convinces me to cancel the wrecker I have called to take "our car" from Atlanta to Athens and have it towed to his shop so he can fix it. This also probably saved me a from a very expensive towing bill back to Athens. Lucky for us, a local church sent us a very generous check as a love offering that will more than cover the cost of repair for "our car".



Despite our morning excitement, we did make it to Piper's appointment. She had her shot and we stuck around for an hour and a half to make sure she did not have a reaction to the medication. She did just fine. Originally, we were supposed to have a bone marrow asparate done and be readmitted to the hosptial to start her second phase of chemo on Friday, but the doctor checked her blood counts yesterday and they dropped a little from when we left the hospital so thay postponed the bone marrow and the second phase until Monday. We will be home one more weekend which is great. Her intial diaper rash from the chemo has pretty much healed, but she has developed a small spot on her cheeks that will not heal once the second phase of chemo is started. We are trying to get her little butt healed as much as possible so not to delay her treatment any longer. We will visit the hospital in the morning to have her blood counts done so the doctors can decide when they want to have her admitted and start her next phase of the chemo. We are so thankful for all of your prayers and gifts that have been sent our way. Please continue to pray fro Piper's diaper rash and blood counts so that she can start the treatment that she needs.



Chad

Here is a video. Sorry for the crick in your neck, but it is worth it. Pay no attention to the old guy with the creepy laugh. I am sure he is just doing his part to bring a little joy to the world. video

Monday, October 19, 2009

"enjoy every minute"

I am laying on the floor much longer than before. I am calmer getting out the door. I am slower to read a night time story. I am happier to hear a cry in the night. I am definitley a mother of a child with a terminal illness...I dont know how many days I have with my sweet Piper. Or for that matter with any of the people I hold so very dear but I will tell you that I became a better mommy starting Sept 16th after Piper was diagnosed. I now understand what it means to "enjoy every minute" and I do.
I have a wonderful friend who lives 2 time zones away that I still stay in contact with even though I havent hugged her in 8ish years. Way before I was a mommy, she went through the deaths of her two twin sons at birth...I have often wondered how she has made it through and been awed at her patience and joy she has while raising the children that God has blessed her with since then. I now understand that she loves her children more deeply than most moms ever think to...she understands the true fraility of life and once you get that concept you learn to love with that intensity never before imagined.
That is why although I think this illness just plain sucks...its also taught me to appreciate my girls. Each one. Every moment and every day. I just dont have the time for foolish things like showers when Piper wants to smile at me. And a walk (or a "push me up the hill again please, mommy") with Linley trumps an afternoon nap every time. I am blessed with what I have and I will not have to look back when my girls are teens or mothers themselves and think "I wish..." because I know that when my head hits the pillow tonite that my girls know I love them and I am learning just how much loving I am capable of.

Sunday, October 18, 2009

Home at last

After being told not to expect to be able to bring Piper home for the 6 months of her treatment, we are Home. On Friday (10/16) her blood counts were already back to normal so after she had her lumbar puncture and the coinciding chemotherapy we headed home until next Friday(10/23)! Of course, we have a junk load of medicines to give her every day and that is a little frightening, but we just line her and Linley up and give out meds. (for those of you who dont personally know my family our 4 year old daughter Linley is Growth Hormone deficient, meaning her body does not make the hormone neccesary to have her grow naturally and she has nightly shots to supplement it.) Piper is doing wonderfully here and Linley is really enjoying spending the time with her in a normal setting. Both have been sleeping until 9am which means that Chad and I do as well...and I have not slept so well in months even with Linley practically on top of me.

Piper is very puffy from the steroids. The inofficial name for it is "moon face", which while I dont prefer the name, I agree with it being very accurate. But of course she is oblivious. Her voice has come back alot and she makes these screeching noises along with her humming and she is absolutley enthralled with faces and enjoys spitting at you in glee. Just wondeful. Piper is proving to be as chill as Linley was and possibly even more...Chad and I are so sure that our next child will be crazy because you cant get sweet, good babies each time, right???

I do have more to write but I would rather go lay on the floor and watch All Dogs go to Heaven and play with the girls. So sorry, Ill get back to you all later.

Wednesday, October 14, 2009

Plans? Dont make any.

We are now on day 27 of the 36 day Induction phase. The next phase is called the Induction Intensification phase and will last 28 days total. Initially we were led to believe that we would be here at the hospital full time for the first phase and then here-home, here-home, here-home for the remaining 5ish months. Apparently this is not the case and we are uncertain as to when, if ever we will be able to bring Piper home until she achieves remission at the end of these very long 6 months which should be mid-March.
With the frustration of this news we have had to re-think alot of plans we had brewing. Chad will be attempting to defer his enrolling in UGA for a semester until we are done with the first 6 months. We will "live" with my parents until then to keep Linleys world as normal as possible and really, whats the point of renting a place we may or may not be able to sleep at??? Chad will be going back to work pretty soon as we still have expenses and bills. And Linley will hopefully, be able to do a few sleepovers here at the hospital so that I can feel a small semblance of how my family should be.
The good things that I am trying (sometimes fruitlessly) to remember are that Chad has a very flexible boss who will work with him and his schedule. Linley has a wonderful and supportive preschool that she will now be able to finish out the year at. We have a great network of friends and family that want to help us out. And most of all, Piper has made it through the first phase without contacting any infections. This alone is an awesome acheivement and we are so proud of her little, puffy, sweet self.
I have been asked to please let you all know specifically what to pray for and I am sorry that I keep forgetting to do so. I guess I am still not quite able to comprehend all the prayers that are being thrown up for my family. So we are asking for continued prayer that her diaper rash does not worsen. That we would be able to go home soon to recharge. That UGA will defer Chad without any complications. And that God will continue to pour His peace out on us.

Monday, October 12, 2009

I am a diaper changing pro.

Just suppose you were to have to change your (tummy sleeping) 3 month old child every 3 hrs round the clock, even though every mom knows NEVER to awaken a sleeping child. Because I now consider myself a pro and the Mother of the Year so I am going to share my tips with you. (hey...if Obama gets a Nobel Prize for having great ideas/plans, then I surely should get Mom of the Year just for multiple middle of the night diaper changing creativity.)

#1: Put your child in one of those (usually very pointless) gowns. And socks to her knees. That way her bum is already semi exposed and yet her legs remain warm.

#2: Put the correct sized diaper on backwards so that those crazily loud velro straps are on the top and you dont have to dig under her tummy searching for it at midnight. Or 3am. Or 6am.

#3: Put a diaper 3 sizes bigger than the one she wears so that the inevitable leak is semi-caught.

#4: Because the urine is only semi-caught, place layers of chucks absorbant pads and receiving blankets under her belly so that when your sweet bundle of joy pees through both diapers you can throw a layer away. And another layer again at midnight. And 3am. And 6am.

#5: When actually changing the diaper rely alot on your sense of smell and basic dark shapes to know whether you are wiping off the layer of "spackling textured" diaper rash creme or actual poop.

#6: When the bum smells no more or the dark shapes look a little less dark...add more "spackling textured" diaper rash creme liberally.

#7: Put all of your sweet little ones layers back on and cover her up and look down at her and think that surely. surely. surely. THIS child will never tell you that you dont love her. That somewhere deep in her pre-teen memory she will vaguely remember layers of diapers and the smell of that "spackling texture" diaper rash creme and will know that it means you loved her more than 3 consecutive hours of sleep. Of course, the lack of 3 hours of consecutive sleep did make you think you were qualified for Mom of the Year because of a few fuzzy diaper changing tricks. But overall you will know in your mind that you love that little chunkey monkey way more than you ever thought possible. And she too will love you. Surely.

Saturday, October 10, 2009

Moving on Up.

We are moved. Thanks to my parents, mother-in-law, David and Ginger,Nakia and Dustan (Eli too), sweet Kara and my best friend Miriam we have taken all of our belongings and placed them in a 10x10 storage unit until January. Yes, all of our lifes belongings have fit into a 10x10 storage center but thats because I am slightly (overly) weird about clutter and things that have no place. Plus, I have to fit myself, Chad and 2 girls into a 720 sq ft apartment on campus with minimal storage. How? Who knows...I am always up for a challenge and am already planning the decorating part. And now a wonderful friend is taking over all the rest of our belongings which we left strewn around the house and will sell it for us at a garage sale...thanks Kara!


Linley is still in North Carolina with my best friend and her girls. She calls me every night to have me pray for her and I cannot tell you how much I miss her. Or how blessed I am that Miriam willingly and eagerly met me half way and has loved on and cared for Linley as only a mommy can these last 3 days. Thanks you! Piper is a doll as usual...my mom came to the hospital to stay with her while Chad and I took 24 hrs to pack and move. I came back to a very contented and sweet girl. We talked more with the Doctor on call this week about Pipers temporary vocal paralysis and got more encouraging informatione. Apparently one type of chemo, called Vincristine, is what causes it...she had a 3% chance of it having this side effect and sure enough, she did. So the Doctor canceled her Vincristine that was supposed to be given yesterday (friday) and is waiting to see if the vocal nerves begin to repair themselves in which case she will be given much smaller doses next week and the following week as well. We already are seeing some more "pitches" coming out of her mouth and hopefully she will be able to receive the full chemo without further complications.


I am really enjoying the nurses here. I was told that the turnover rate for pediatric oncology nurses is high but the ones that I have met really seem to love their jobs. And I love having their experiance, laughter and comeraderie as they work so hard to heal my little one. A few have even shared that they are Believers which calms me so much...Knowing that those also pray for Piper as well as treat her. Just another way I am feeling so cared for in the midst of the unknown.

Tuesday, October 6, 2009

scared

This afternoon after dropping Linley off with my mom, I headed down hwy 316 towards the hospital and had a good cry. I have never been so scared in my life...never felt so alone. I am so worried about Piper and her health, so worried about Linley being lost in all this shuffling around, worried about Chad and I and our marriage...just overwhelmed with worry. And please dont tell me that God is taking care of me or that its going to be ok...because I know that. I know in the long run I am going to make it, irregardless of how sweet Piper does. And yes, I know that God loves me but I also know that we live in a fallen world and that sometimes bad things happen no matter how hard I pray or cry or yell. I trust that the peace that has covered me the last 3 weeks will continue no matter how much I rail against God and I hope that when all of this is said and done, good or bad that I will look back with a newfound trust in God...no matter what.

Monday, October 5, 2009

what a weekend.

Before we found out about Piper, Chad and I were feeling very blessed. We had not one, but 2 beautiful and healthy girls, our marriage is stronger than it has ever been and Chad had just been accepted to the University of Georgia. Excuse me a minute while I brag on him a little...Chad has kept his GPA steady at a 3.5 while being a loving husband who loves date nights with me, an involved father who is not afraid of changing a dirty diaper and loves to play soccer with his oldest and working a full time job. When he was accepted to UGA we applied for family housing, which is essentially an apartment for families on the campus. We planned to move out of our house the middle of December...but then we got Pipers diagnosis.
The little house we rent is actually Chads grandmothers. And although we have put many, many, many hours into it the house still has no ventilation or central heating or air. We do not feel comfortable putting her compromised immune system in the midst of that, plus we have parents who get really excited at the thought of their children back under their roof. Ok, my mom does and my dad loves us and loves the fact that surely we wont be there forever...right? The plan now is to stay with my parents until December when we move on campus. Which is why when my best friends Miriam and Kara told me they "wanted to help in any way" I put them to work helping me pack...we got alot done on Saturday and I am hoping to have the house empty within 2 weeks. I feel a little bit discombobulated with my belongings here, at home and some at my parents place. ugh.
But back to Piper. On Friday they did a Lumbar Puncture (spinal tap) and gave her chemo specific to her central nervous system to continue to keep the leukemia away from there. Saturday she was here with my mom and my "second mom" Aunt Marilyn and we got nothing but good reports when we got back to the hospital at midnight. For some reason though Piper had a very rough night Saturday night and I was up with her most of it. Her temperature had spiked by Sunday morning and that combined with the diaper rash she has developed, the doctors decided to start her on antibiotics and treat her as though it is an infection.The blood they drew on Sunday will take a few days to get back and until then she is on antibiotics and good cream for her hiney. Also, Piper has always been a vocal little baby but the last few days she had begun to sound like a kitten...very small and weak. This weekend it was been decided that she has temporary vocal paralysis due to a specific type of chemo done last week. It is very, very uncommon but dont you know Pipers little voice is mainly gone. While it is very pathetic to hear her attempt to cry, she is not in pain and her voice should be back to normal in 6-9 months. Her mood had improved signifigantly by early afternoon and she even chose to smile for some of our visitors, and we had not seen a smile out of her for a few days. And last night she slept from 1030-430am, got a bottle and slept in until 930...it was much needed rest for all of us.

Wednesday, September 30, 2009

Sept 30


Got IV pole? Check.
Got many, many spit rags? Check.
Got a "won't-take-it-but-just-in-case-she-will" paci? Check.
Got a bottle of hand sanitizer in case someone gets out of wagon? Check.
Got a big sister who barely fits? Check.
And this is how we roll in the Aflac Cancer Unit here in Atlanta...
Obviously we get alot of attention on our daily jaunts and not for all the paraphenalia. Seriously, I make beautiful girls dont I?

Tuesday, September 29, 2009

Tuesday 9/29

Chad and I are having a little bit of a glimpse into parenting a pre-teen. Seriously, Piper is happy, whiny, screaming, smiling all in 30 minutes...the Drs said she was going to get "moody" but wow!
Although as I write this she is sound asleep across the room. She is refusing to sleep anywhere but in my arms and I have resorted to what I always said only slacker moms did (sorry ya'll)...putting her to sleep with a bottle in her mouth. Its hard though. With my oldest she would cry a bit when she wasnt happy but eventually went of to the Land of Nod and has developed into a happy contented 4 year old. Piper though, I know she doesnt feel well and I cant raise her the same way...thus a little bit of spoiling. Hopefully no bottle cavaties like us moms are taught to fear so much.
Chemo and steroid treatment is still chugging along. Piper is still doing well...not much has changed in the last few days but I was told a few times that I wasnt keeping you guys up to date enough. And you all have been so wonderful to us with all the cards, calls, meals and prayer.
So the update is that Piper is basically 13 years old and I am now adding bottle cavities to the things I am worried that her little body will get. Kidding...the update is that God is good. Cancer stinks and God is still good.


Oh and I am trying to download some new pictures of my beautiful girls but the computer is being funky...dont worry though, you will get some great ones someday!

Friday, September 25, 2009

Sept 25 pm

I am back after a little "rest" time with Chad and Linley...although my eldest thought that 7:15am was a reasonable time to waken the world. She must not have gotten the memo that Mommy and Daddy are oh so tired. At least she doesnt seem to have an idea how frightening and tiring all of this is. We had a great time with her yesterday! I have been a stay at home mom for all of her life and yet I dont think I have ever enjoyed a day with her so much. Everything seems so much more precious. I was able to be a substitute teacher for her class, which she thought was oh so cool. And then she and I and Chad went out for lunch and ran some errands then ended up at the soccer fields while Daddy worked and Linley and I played, walked and explored. A good time was had by all.
When I got back to the hospital this morning Piper was happy and well cared for. My mom just has a wonderful knack for caring for children...whether they are 11 weeks old or 28 years old. We spent the day here playing with Linley (thank you to the Quint family and Aunt Paula for some amazing crafts for her!) and kissing on Piper...every once in a while we would swith it up a bit and kiss on Linley and play with Piper.
The nurse put a catheter in Piper until Monday. The new meds she began today make urine very acidic and can easily cause diaper rash. This gives us a nice little break from the 10lb wet diapers she has been having! She wasnt too fazed by it and has slept though the chemo this evening...it is all through the IV but still impressive. Piper is eating like crazy...as much as 30 oz in a 24 hr period....shes going to be my chunky monkey for sure.
We got a visit from the nurse practioner named Lois. She told us how impressed she was with Pipers progress and demeanor. Apparently she is doing just as desired and better than expected. We did get the results back about the MLL gene and Pipers are re-arranged...but when Lois told me this and my face fell she rushed to encourage me. (And if I have said it once I have said it a thousand times...these Drs and Nurses are not big on fancy encouragement, just alot of statistics and such.) She said that Pipers wonderful health is more promising than anything right now. So keep praying that her little body stays free from infection and that chemo can continue to do the work it is intended.
Some people have asked about visiting and I wanted to say that I am totally fine with that. Of course, you cannot be sick and no children are allowed...otherwise it would be great. Just let us know before you come down ok?

Wednesday, September 23, 2009

Tuesday 9/22

I first have to say how blessed I am. Maybe I am not going through this whole process the right way, but facts are facts and I still have 2 beautiful girls to love on. On top of my girls and my best friend/lover I have friends and family and a support system that rivals the best out there...I have read every note, email and prayer sent to us. Each word of encouragement has touched me even if I am not responding to anyone right now...thank you so much.
Pipers 5th day of steroid treatments went the same as the rest. She is managing well and beginning to learn to laugh (amazing timing the kiddo has). Her white blood cell count has dropped significantly, which while not a "good" thing because it wipes out her immune system almost completely, it is the goal. Because of her extremely susceptible immune system she has been moved to another room within the Aflac inpatient unit. Her new room has a special air flow system that rotates the good air instead of allowing compromised air from outside. We are also keeping an eye on a small diaper rash spot on her little hiney...any infection is frightening.
The steroids have her eating alot more so we are getting up in the middle of the night more often...and I have never been so happy to hear a newborns cry.
Linley is doing well thanks to a bunch of amazing women who have been picking her up from preschool and keeping her happy and occupied. This Thursday her preschool class is celebrating Johnny Appleseeds birthday and although it will be difficult, I am planning to leave my mom and dad to care for Piper while I take part in the party at her school and spend the afternoon and night with Linley and Chad. I am certain that this will be scary for me, (I havent left this hospital since Piper was admitted last wed.), but it is important to not forget that I am also a mommy to a wonderful 4 year old...and she needs me as well.

Monday, September 21, 2009

People have asked where they can send stuff to us...we should be at Scottish Rite for the next month and that address is:

Childrens Hospital of Atlanta
1001 Johnson Ferry Rd. NE
Atlanta Ga 30342

Aflac Unit- room 197
C/0 Needham family

Thanks to all of you who have sent flowers, notes and balloons...Piper especially loves the balloons. :)

"gold star"

Today we are attempting to get a routine going on. All the out of town support has had to leave and Linley is back at her preschool. My mom is working out a system of childcare for Linley in the afternoons after preschool that would enable my mom to be here at the hospital and yet would have either my mom, Chad or myself home with her for dinner, bedtime and that much needed attention. We are so glad that the hospital welcomes siblings in good health...Linley and I were able to have a little time one on one yesterday as we went exploring the elevators, cafeteria and multiple fountains outside. To say that I miss her is a gross misunderstatement.
Piper is as usual, acting grand. I shudder to think that she is acting so normal I would never been even raising an eyebrow or taking her to the doctor...Thank you Lord for the way you lead parenting and doctors intuition. Next week her chemo will be alot more intensive and we can expect the days and nights to be a lot more demanding. For now we are receiving each and every one of her coos, snuggles and smiles as a promise of more to come.
Chad went to work last night. He has taken time off from his full time job to be here at the hospital but still will be working 2 or 3 nights a week at his part time job (soccer referee). Thankfully his mom is a self confessed night owl and spent the evening here with me and Piper.
Last night when the doctor came in to check on Piper he told us her charts were the best on the floor for the day and that she gets a "gold star". This doctor is very good at what he does but he is very much a realist, which means he gives us sad statistics and pulls us down emotionally...But the man may not have realized that he just gave us encouragement!!! And we take it in any form from anyone at any time these days.

Sunday, September 20, 2009

How did you know Piper had Leukemia?

We have had alot of people ask us how we were able to know something was wrong with Piper. And I know that this blog is read by many people and many of you do not believe in God but I do and I know that His hand is on my little girl...let me share the first of many "coincidences" (as the medical world insist on calling them)

Piper was born healthy on 7/7/09. She was and is beautiful, alert and chatty. I am not an alarmist parent and I am constantly going with my girls...Wal-mart, the park, church...We like to run around and Piper was proving to be just as flexible as her big sister. Its been a fun last 3 months for sure.
So when Piper developed a fever last Monday I wasnt too worried but combined with the diahrrea she had had for a day or so and the few sleepless nights she was having, I was just tired...and ready to have the Dr give her something to help her out. We went in and Dr. Baker took a look at her and said he thought it was just a stomach bug and for us to come back in if it were to get worse. Then he seemed to rethink it and said that he was going to send us to Athens Regional Hospital to do blood work to rule out the rotovirus. So after a few hours at the hospital and some blood work it was told to us that Pipers platelets were low so they kept us overnight to do more tests in the morning. Dr Baker gave the hospital doctors a few things to test for and he threw the leukemia test in as an afterthought. As we all know the leukemia test came back positve and we were all stunned, even Dr Baker who by his own addmittance did not think that was even a possibility.
Since arriving at Scottish Rite, Piper has had no fever what so ever. Her diahrrea went away as well and she has been in wonderful shape. The cold that she had was nothing to do with her diagnosis...just a "coincidence" as the Drs say. The doctors are surprised because apparently most of the young children who come in with leukemia already have an infection or sickness which make treating the leukemia even more difficult.
Piper could have gone weeks without being diagnosed. She would have gotten sicker and sicker before we thought her sickness was anything more than a common cold or something. I believe that God used Dr Baker and I am so glad that Chad and I chose to continue bringing our girls to him even after moving an hour away.

Saturday, September 19, 2009


Today has been fairly slow. It is Day 2 of Chemotherapy and Piper is not showing any signs of pain...she is very alert and loves all the balloons and new faces smiling at her. Pipers "lead" (her IV through her chest) became a little clogged and they were easily able to unclog it and draw blood out. Linley has shown up now and is playing games with all the guest...she doesnt seem bothered by any of this...that kid is no stranger to needles or blood.
This is a picture of Piper hanging out in her throne...or bed.
I used to love the evenings. The sweet time of dinner, baths, stories, kisses and bedtimes...and then that blessed peace and quiet. In the last few weeks I would have Linley settled in bed and give Piper her bottle and get her to bed and take my OCD self around the house picking up clutter and washing dishes and when I felt like my home was in order I would look around and find my other half and curl up next to him and just BE...be calm. be blessed. be happy. Never knowing that all I was taking for granted was about to be rocked like I could never imagine.
I dont like evenings anymore. I miss my Linley and her barrage of questions as I am attempting to tuck her in. I miss giving Piper her bottle and hearing her hum herself to sleep. I miss curling up behind the love of my life in our queen size bed. And I miss when the last thought before sleep was..."maybe those girls will let me sleep in".

Here at the hospital so much is unknown. When I awaken in the middle of the night I only have half of my heart in the room...I have to trust that Linley isnt calling out for her mommy in her bed 50 miles away. I look at Piper sleeping so sweetly and try not to think past the moment I am standing in. And I hesitate to fall asleep because the minutes as I wake up are so very painful...every thing comes crashing down on me all over again. I pray that I can make it back to those evenings I miss so much. Heck, right now I am praying that I make it until this evening.

Friday, September 18, 2009

Friday Evening (9/18)

This has been a long day and thanks for all the prayers, messages and encouragement.
Her surgery went well and she is showing herself to be quite the trooper already. After a bit of sleeping and a little snack she is smiling and cooing. The surgeon was not able to get a good sample of bone marrow so she drew a blood sample to be tested instead. This will take the same 2 weeks to have results. Without getting lingo-y, we are hoping for a good chromosome (MLL) to show up in her blood test and not a mutated chromosome which, according to doctors, makes the leukemia harder to treat. It is very rare for infants under 3 months old to have their chromosomes not be mutated so we are hoping for a real miracle.
The good news is that there were no leukemia cells in her central nervous system...This is apparently one of the 2 places that are most difficult to eradicate. The other area is the testicles and we are certain there will be none there either. :)
We were given our "road map" today, which is the treatment plan. It has Piper in almost 5 weeks of chemotherapy beginning from fairly mild steroids to some heavy duty stuff later on. After her initital month of chemo, she will be coming back here to Scottish Rite weekly for testing and every few months for chemo for the next 2 years. The first 6 months are considered more critical and infection will be our biggest concern.
We are asking people specifically to pray for "no mutation of the MLL gene"...it sets the stage to know what statistics will be....
It is 630am on Friday. Piper is scheduled to have surgery at 1030am...she will be having a permanant IV put into her chest, bone marrow taken out to be tested and a spinal tap. The bone marrow contains the information that will let the Dr. know whether Pipers outlook is postive or grim. ...Please pray that the marrow contains what it needs to do for Piper...I dont have time to give details but it will be a little more difficult for Pipers marrow to contain this because of her age.

Here we go...

Welcome to my blog. I am going to cry, scream, laugh, complain, sob and question...and its ok because its my blog and its my little girl who has Leukemia. Yes, Leukemia...that disease that everyone hears but never envisions it happening to their own loved ones. Somehow my husband and oldest daughter will help me stand upright and my sweet littlest will keep me on my knees. I am ok with that today and tomorrow I will probably not be. All of the people here tell me thats perfectly normal.
Because it is midnight I am not going to write anything more. Also, because I am mentally spent and this day has gotten worse and worse. I will attempt to keep you all updated if you promise to pray. And I mean on your knees and sobbing, people...because thats the only way to feel how big this is and how big our God will be.