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.

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.

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.

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.

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.

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 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.

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.

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.

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.

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.

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.

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.

.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.

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.