First we ate at Johnny Rockets for burgersy, bacon cheese fries and some amazing milkshakes. So good.
Friday, January 13, 2012
Flashback ( December 27,2011)
This was just mommy and daddy time with Linley. We had some free passes to the Georgia Aquarium and used the ever amazing Nana to hang with Piper while we spent some one on one time with our favorite six year old. She was the perfect age and loved it... It would have been a wee bit hectic taking a non walking two year old into that place but Linley is always our chill and observant kiddo ... Which served her well in this place. Linleys favorites were the otters and and the penguins while Chad and I just about fell asleep in the last display. This part is a huge atrium style fish tank where you just sit in the dimmed room and watch sharks and turtles and other sealife coast by you. Absolutely amazing.
First we ate at Johnny Rockets for burgersy, bacon cheese fries and some amazing milkshakes. So good.
First we ate at Johnny Rockets for burgersy, bacon cheese fries and some amazing milkshakes. So good.
Flashback (first week at Egleston)
Busy was what this week was. Piper was occupied each day with radiation, chemo, different therapy sessions and just being a typical two year old in a very atypical setting.
Very few side effects meant only more good times with our girl.
Very few side effects meant only more good times with our girl.
Flashback (prepping for transplant)
... And by prepping I mean doing anything we could to keep our minds off of the inevitable. The Needham crew was to be dismantled for a few weeks only to be placed back together again once Piper had begun to heal. This is still our heartfelt prayer as we close the gap on a month apart...
But in this sweet time we lived. It was good. Chad and Linley were both out of school and Piper and I were happy to have then home with us to play and run around. There was much staying up late eating ice cream, enjoying FaceTime with Nana and Gpa, sleeping with mommy and daddy, making messy, messy and still yummy teachers gifts, experimenting with new make up kits and of course, the many happy hours spent with a fancy new dollhouse and play kitchen. Chad and I spent a lot of time watching the girls and smiling...you know, like normal parents do but without the worried twitch that we seemed to have acquired.
But in this sweet time we lived. It was good. Chad and Linley were both out of school and Piper and I were happy to have then home with us to play and run around. There was much staying up late eating ice cream, enjoying FaceTime with Nana and Gpa, sleeping with mommy and daddy, making messy, messy and still yummy teachers gifts, experimenting with new make up kits and of course, the many happy hours spent with a fancy new dollhouse and play kitchen. Chad and I spent a lot of time watching the girls and smiling...you know, like normal parents do but without the worried twitch that we seemed to have acquired.
Thursday, January 12, 2012
Flashback ( Merry Needham Christmas)
We intended for our little family Christmas to be the big one...that the actual day we would have less gifts and less smiles. Thankfully we were wrong but we still enjoyed doing our own thing anyways. Linleys main gift was a doll house and Pipers was a play kitchen. Chad as usual got the honors of putting then together but unlike previous ( and real) Christmases there was no midnight mass to watch. Poor fellow toiled though and it was a labor of love and hope... That soon Piper would be home for good to play with hers and that Linley would know we are indeed hearing her little hearts desires. 
Flashback (Merry Needham Christmas Eve)
I was given an ipad/blogger tip today from a kid I used to babysit way long ago. I'd love to take credit for this kids brains but I am afraid all I did was take him for walks and read to him so it must be his parents fault he's a smartie. (Either way, thanks a million Joseph)
Because hopefully I should now be able to add pictures to my posts, I am going to be doing a few flashbacks. This is my way of keeping track of the sweet way we are doing life so if you only want an update on Piper just ignore any "flashback" posts. You would be missing out big time though.
Because we knew Piper would be inpatient and that Linley would not be allowed to visit at Christmas, we did our own thing. This is the Merry Needham Christmas Eve that we did and it was so sweet to see the girls wearing those matching jammies. This was the first Christmas we have had that felt complete and good and right...relapse and transplant a'coming be damned.
Because hopefully I should now be able to add pictures to my posts, I am going to be doing a few flashbacks. This is my way of keeping track of the sweet way we are doing life so if you only want an update on Piper just ignore any "flashback" posts. You would be missing out big time though.
Because we knew Piper would be inpatient and that Linley would not be allowed to visit at Christmas, we did our own thing. This is the Merry Needham Christmas Eve that we did and it was so sweet to see the girls wearing those matching jammies. This was the first Christmas we have had that felt complete and good and right...relapse and transplant a'coming be damned.
Day 15
Piper is still rocking this. A lot more smiles and walking. Even some time spent in the playroom earlier. The doctors are happy with how she looks and feels and we will begin the weaning of the fentanyl tomorrow. Tonight she began to run a fever... Each time she runs a fever they draw bloodwork to look for viruses or bacteria or any other funk that may be residing there. Because she is still on a plethora of antibiotics from the fevers last week they feel like she is covered unless something shows up. The doctors are pleased with how well she is doing thus far and the only concern continues to be the CMV which we have done all that can be done and next weeks test shall show if it was a help or not.
Pipers white count is at .26. Not much but she is at least going the right direction. If by day 21 we don't see a jump then they will begin Neupogen to get things rolling along though I don't think this is a concern at the moment just an FYI to me for how things could go.
Boring is good around here...I'll take it.
Pipers white count is at .26. Not much but she is at least going the right direction. If by day 21 we don't see a jump then they will begin Neupogen to get things rolling along though I don't think this is a concern at the moment just an FYI to me for how things could go.
Boring is good around here...I'll take it.
Wednesday, January 11, 2012
Day 14
Another good day.
Another chance to enjoy Piper and not live fearfully.
Another chance to think and dream of more good days to come.
Piper is doing well...so well. Last night she slept all the way from 11:00pm until 10:00am, and even when she would awaken she was tired enough to go back to sleep without needing me to hold and rock her. I asked them to keep her fentanyl dose at the same rate she runs during the day and chose to forgo the benedryl and hope for the best. And we got it...her pain pump has the option of a "boost" when she seems in more pain but that has not been used in over 24 hours...we are planning to begin the weaning off process tomorrow...this is not a quick process as her body will continue to ache and hurt especially as her counts begin to recover. She still napped from 2:00 until 6:00 this evening which explains why she is still awake watching VeggieTales and why I caved in to a Peppermint Mocha at 7:00 tonight...bedtime will be a while.
The steroid creams seem to be helping as her rash is all gone on her head and her back and arms and the portions on her legs and torso are beginning to fade away. Her poor little face looks like she has been in a bar fight as each bump and scratch she gets just sort of festers there under a layer of bacitracin. She is very red on her cheeks but it's thought to be simply as irritation to the saliva and such...no concern but lots of triple antibiotic cream. She coughs often and has some white in her mouth so they are treating for thrush but her lungs continue to sound clear. All of her bodily functions continue to stay within a normal range, her weight included.
The only concern we still have is her CMV levels. Pipers CMV copies jumped from 100 to 3,100 in the course of 7 days...this is not shocking but it is reason to be proactive. She receives a specific CMV sensitive antibody every other week and this has been bumped to weekly. Because Piper has an allergic reaction to IVIG she is given Tylenol, benedryl and solu-medrol prior to each infusion which has proven effective. Unfortunately this is very much a catch-22 because the same solu-medrol steroid which keeps her from having a reaction is the same steroid which will keep her immune system compressed which is exactly how CMV thrives. So Dr. Chiang chose to give her a half of the dose of solu-medrol and hope it would still keep Piper calm...and it did. This is very good news as it allows Piper to have all that her body needs to fight off any more CMV copies. I imagine they will attempt a smaller dose next week and hope for the same results. She will continue to have labs drawn to check the CMV levels each Monday so we have results within 48 hours usually...let's pray she will hold steady or even better, knock the levels down some.
Pipers white count is at .2 but slow and steady is how she rolls. Until she has higher white cells she will not have an decipherable ANC...and she will need to have an ANC of 500 to be considered engrafted. Hopefully we are staying ahead of the CMV enough that her ANC will develop in time to really keep it at bay. Remember please, engraftment only means that her body is beginning to recuperate...we still don't know that she is producing donor cells or her own cells. And either way, she has a long way to go before she is out of cautions way with both life threatening infections and the chance of leukemia still around or relapsing. Right now Piper is playing with her play camera in the bed and dancing to music and giggling. She walked twice around the nurses station and while she was definitely shaky she did it and she continued to play while standing in the room when we returned. She is loving the $3.48 shoes I picked up for her the other day and then chose to wear a shirt of mine to bed...she is definitely a two year old despite all that she has been through and all that she struggles with.
She amazes me, even when she is bossing me around.
( Oh, and I would love to be posting pictures while I am posting words but I cannot for the life of me figure out how to load pictures on my iPad...I have the thingamajig that allows me to download them from the camera SD card but for some reason it wont allow me to attach them to a post...even if I have taken the pictures with the very iPad I am attempting to post on....I don't get it but let me know if anyone does.)
Another chance to enjoy Piper and not live fearfully.
Another chance to think and dream of more good days to come.
Piper is doing well...so well. Last night she slept all the way from 11:00pm until 10:00am, and even when she would awaken she was tired enough to go back to sleep without needing me to hold and rock her. I asked them to keep her fentanyl dose at the same rate she runs during the day and chose to forgo the benedryl and hope for the best. And we got it...her pain pump has the option of a "boost" when she seems in more pain but that has not been used in over 24 hours...we are planning to begin the weaning off process tomorrow...this is not a quick process as her body will continue to ache and hurt especially as her counts begin to recover. She still napped from 2:00 until 6:00 this evening which explains why she is still awake watching VeggieTales and why I caved in to a Peppermint Mocha at 7:00 tonight...bedtime will be a while.
The steroid creams seem to be helping as her rash is all gone on her head and her back and arms and the portions on her legs and torso are beginning to fade away. Her poor little face looks like she has been in a bar fight as each bump and scratch she gets just sort of festers there under a layer of bacitracin. She is very red on her cheeks but it's thought to be simply as irritation to the saliva and such...no concern but lots of triple antibiotic cream. She coughs often and has some white in her mouth so they are treating for thrush but her lungs continue to sound clear. All of her bodily functions continue to stay within a normal range, her weight included.
The only concern we still have is her CMV levels. Pipers CMV copies jumped from 100 to 3,100 in the course of 7 days...this is not shocking but it is reason to be proactive. She receives a specific CMV sensitive antibody every other week and this has been bumped to weekly. Because Piper has an allergic reaction to IVIG she is given Tylenol, benedryl and solu-medrol prior to each infusion which has proven effective. Unfortunately this is very much a catch-22 because the same solu-medrol steroid which keeps her from having a reaction is the same steroid which will keep her immune system compressed which is exactly how CMV thrives. So Dr. Chiang chose to give her a half of the dose of solu-medrol and hope it would still keep Piper calm...and it did. This is very good news as it allows Piper to have all that her body needs to fight off any more CMV copies. I imagine they will attempt a smaller dose next week and hope for the same results. She will continue to have labs drawn to check the CMV levels each Monday so we have results within 48 hours usually...let's pray she will hold steady or even better, knock the levels down some.
Pipers white count is at .2 but slow and steady is how she rolls. Until she has higher white cells she will not have an decipherable ANC...and she will need to have an ANC of 500 to be considered engrafted. Hopefully we are staying ahead of the CMV enough that her ANC will develop in time to really keep it at bay. Remember please, engraftment only means that her body is beginning to recuperate...we still don't know that she is producing donor cells or her own cells. And either way, she has a long way to go before she is out of cautions way with both life threatening infections and the chance of leukemia still around or relapsing. Right now Piper is playing with her play camera in the bed and dancing to music and giggling. She walked twice around the nurses station and while she was definitely shaky she did it and she continued to play while standing in the room when we returned. She is loving the $3.48 shoes I picked up for her the other day and then chose to wear a shirt of mine to bed...she is definitely a two year old despite all that she has been through and all that she struggles with.
She amazes me, even when she is bossing me around.
( Oh, and I would love to be posting pictures while I am posting words but I cannot for the life of me figure out how to load pictures on my iPad...I have the thingamajig that allows me to download them from the camera SD card but for some reason it wont allow me to attach them to a post...even if I have taken the pictures with the very iPad I am attempting to post on....I don't get it but let me know if anyone does.)
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