Monday, December 28, 2009
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.
Thursday, December 24, 2009
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
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
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
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
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
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
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
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
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
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
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.
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
Monday, November 23, 2009
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
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
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
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
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
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
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
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
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
Thursday, October 29, 2009
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
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.
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.
Monday, October 19, 2009
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
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
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
#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
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
Monday, October 5, 2009
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
Tuesday, September 29, 2009
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
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
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
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. :)
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
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 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
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....
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.