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.
Tuesday, December 1, 2009
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.
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.
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.
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.
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.
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.
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.
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