Piper continues to rock this. Her white count dipped a little to .14 today but that is common as her body works to welcome these new donor cells. Her rash is looking better though she looks like a greased pig from all the steroid creams being plastered upon her. Still no diaper rashes and still some pain when urinating. No fevers. And no eating or drinking though she did take two sips of water today...maybe more tomorrow. Her saliva has decreased except I still notice a lot when she is asleep and on my chest when she is snoozing there. Our only immediate concern right now is that her CMV levels have jumped to 3,100. This virus is brutal and we came into this transplant knowing it was possible for this to cause complications and concern....at this point it is more of a reserved concern and they plan to give Piper a type of immunoglobulin specific to CMV on Thursday as well as continuing her daily dose of antiviral. Hopefully she will engraft and will produce what is necessary before this becomes out of control. She has laughed and played and danced and giggled...but not napped. I am beginning to feel confidant in my assumption that the fentanyl is causing her to not sleep...each time they up her dose in hopes she will be comfortable, it backfires and she fights off sleep until she crashes usually around 6am and then she sleeps deeply on my chest until noon. And naps are a way far away thing...she hasn't napped since last week for me. Thank God my mom came today and pushed me out the door and towards Barnes and Nobles and caffeine.
I mentioned a few weeks ago about our friend Paxten who also is post transplant for relapsed infant leukemia. Yesterday things took a severe turn for the worse and she is currently in the ICU with multiple complications. My heart aches for the entire family, this all happened very quickly and as you can imagine they are exhausted and worried. Please pray for Libby, Blake and sweet Paxten...pray for healing and peace.
This is what we fight against...the complications as well as the cancer. And each family is so very tired and scrapping by on every little dose of hope thrown their way. Just pray for this family as well as my Piper. And be thankful if your biggest worry today was making dinner and balancing homework and bedtimes and such...because that sounds pretty wonderful to me.
Tuesday, January 10, 2012
Monday, January 9, 2012
White cells
...we've got some! This mornings blood work showed a white cell count of .16. If Piper has white cells and a ANC over 500 for 3 days in a row she is considered engrafted. Of course, more times than not the patient will kind of bounce along for a few days before consistently producing healthy cells.
Today was a long but good day. Piper was in good spirits and even participated in physical therapy for the better part of an hour. She has been fever free for over 24 hours now and we hope this trend continues. She's been given a steroid ointment for her entire body just to err on the side of caution regarding her rash. Because she is beginning the process of engraftment they are hopeful that it is only something called " engraftment rash" but there is always the high potential of graft vs host which is a whole different and dangerous ball game. Her antibiotics have been switched up some as well because she is having some severe pain when urinating. They think it is her urethra being inflamed which can cause burning since her urine is still clear and shows no sign of uti. Because of a very rough night last night Dr. Chiang has upped her overnight fentanyl dose...she will remain at the same dose during the day but hopefully this increase at night will give her some much needed rest and relief. I would not complain if I were to be able to sleep better either.
So here's to full engraftment, a good nights sleep and the perfect healing in every way for Miss Piper.
Today was a long but good day. Piper was in good spirits and even participated in physical therapy for the better part of an hour. She has been fever free for over 24 hours now and we hope this trend continues. She's been given a steroid ointment for her entire body just to err on the side of caution regarding her rash. Because she is beginning the process of engraftment they are hopeful that it is only something called " engraftment rash" but there is always the high potential of graft vs host which is a whole different and dangerous ball game. Her antibiotics have been switched up some as well because she is having some severe pain when urinating. They think it is her urethra being inflamed which can cause burning since her urine is still clear and shows no sign of uti. Because of a very rough night last night Dr. Chiang has upped her overnight fentanyl dose...she will remain at the same dose during the day but hopefully this increase at night will give her some much needed rest and relief. I would not complain if I were to be able to sleep better either.
So here's to full engraftment, a good nights sleep and the perfect healing in every way for Miss Piper.
Sunday, January 8, 2012
Each time I race from one home to another, I cry. Usually its an exhausted whimper, sometimes its a frantic sob but it is always rejuvenating. I have my worship music on and my windows down and me and my Camry just roll down hwy 78...knowing that my pace will change as soon as I hug the neck of whichever girl I am barreling towards. And I am always, always, always ready to see either blue eyed girl...by the time I have spent s night or two or five away from one of them I more than ready to give them my undivided attention.
Which is why the commute between each girl is so very therapeutic. Crying, in whichever manner, is so good for my soul.
So after almost 48 busy hours with Linley I am back here with miss Piper. Linley and I went to her basketball game, a birthday party, a family dinner, church today, the grocery store and even managed to run two loads of laundry and paint our toes. Chad and Piper apparently did a lot of cuddling and watching laughing babies on YouTube. Like a Chad said last night, things with Piper remain within the normal parameters of a transplant patient. She has had two fevers today but still nothing is growing on her cultures so there is talk of doing a CT just to rule out anything fungal. She has developed a red rash on the better part of her body which doesn't seem to bother her but sure scared me when I laid eyes on her. Oh yeah, and she pulled her NG tube out early this morning in a fit of rage. I imagine it was hurting her already sore throat so out it came. Because she is at the (hopefully) worst portion of this transplant process, her mouth and throat and GI tract is covered with sores and ulcers so it was decided to keep it out until she heals up some. She will continue to have TPN and lipids to sustain her. Sleep continues to be sporadic although the higher dose of Fentanyl is helping with pain and discomfort she still cannot seem to settle herself much to sleep solidly for long periods of time.
Still no sign of those lovely healing white cell but we are crossing into the earliest possible time they could make an appearance. Hopefully when they show their pretty little heads they will also bring the donors cells with them but please leave the leukemia ones at the curb....they have been a part of my sweet Piper for long enough.
Which is why the commute between each girl is so very therapeutic. Crying, in whichever manner, is so good for my soul.
So after almost 48 busy hours with Linley I am back here with miss Piper. Linley and I went to her basketball game, a birthday party, a family dinner, church today, the grocery store and even managed to run two loads of laundry and paint our toes. Chad and Piper apparently did a lot of cuddling and watching laughing babies on YouTube. Like a Chad said last night, things with Piper remain within the normal parameters of a transplant patient. She has had two fevers today but still nothing is growing on her cultures so there is talk of doing a CT just to rule out anything fungal. She has developed a red rash on the better part of her body which doesn't seem to bother her but sure scared me when I laid eyes on her. Oh yeah, and she pulled her NG tube out early this morning in a fit of rage. I imagine it was hurting her already sore throat so out it came. Because she is at the (hopefully) worst portion of this transplant process, her mouth and throat and GI tract is covered with sores and ulcers so it was decided to keep it out until she heals up some. She will continue to have TPN and lipids to sustain her. Sleep continues to be sporadic although the higher dose of Fentanyl is helping with pain and discomfort she still cannot seem to settle herself much to sleep solidly for long periods of time.
Still no sign of those lovely healing white cell but we are crossing into the earliest possible time they could make an appearance. Hopefully when they show their pretty little heads they will also bring the donors cells with them but please leave the leukemia ones at the curb....they have been a part of my sweet Piper for long enough.
Day +10
Piper is doing relatively well. Still lots of mucositis and she wasn't very active today, but if you hit the pain pump enough she will get comfortable enough to play with and laugh at daddy. She still doesn't have any white counts, but that is normal right now. She ran a fever around 4:30a Saturday morning, but after a little Tylenol it stayed away the rest of the day. Piper has gotten into a routine of waking up between 5 & 6 a wanting to be held. She is starting to let me lay down and hold her tight which is so much easier to gather back to sleep.
I am sure when Sus gets here tomorrow she will perk up and you all will have pictures of Piper standing, smiling and playing. She likes to make daddy look like a liar. She is still being sweet, just very clingy because she has been in pain and we are keeping her drugged. She does have her little moments of turdness, like telling the nurses bye-bye as soon as they walk in the door or slapping syringes out of their hands,but that is rare and only in times of real meltdowns.
I know I do not make this as readable and enjoyable as Sus does, but this is how she has been for the last several days. Still doing good, but definitely in some pain that is manageable with meds. Still sweet and beautiful.
Chad
I am sure when Sus gets here tomorrow she will perk up and you all will have pictures of Piper standing, smiling and playing. She likes to make daddy look like a liar. She is still being sweet, just very clingy because she has been in pain and we are keeping her drugged. She does have her little moments of turdness, like telling the nurses bye-bye as soon as they walk in the door or slapping syringes out of their hands,but that is rare and only in times of real meltdowns.
I know I do not make this as readable and enjoyable as Sus does, but this is how she has been for the last several days. Still doing good, but definitely in some pain that is manageable with meds. Still sweet and beautiful.
Chad
Thursday, January 5, 2012
Day 8
Another day down. We had a visit with Dr. Haight, who was the oncologist whom we first met on this transplant journey. She has been in the clinic the last few weeks but popped in to say hello, which I enjoyed.. She has a calm and realistically optimistic manner that I can appreciate and she was very happy to see how well Piper is doing. Many of the concerns they have for a child beginning transplant are not apparent in Piper..not that we are by any means on the way to recovery yet but as she said, each day we can get by with Piper doing well is a day closer to engraftment and that lovely road to healing.
And today was a good day. Sleep continues to be a struggle for her...no less than 4 times last night I was up with her which is not uncommon but for some reason Piper is insistent that we stand and hold her....and that is exhausting. I worked today on other options to help her continue to feel secure and to allow Chad and I to still sleep a little. So far she is enjoying the whole " sleeping on mommy's chest like an infant" position, which is better than the alternative. We also elected to have Benadryl given to her prior to bedtime in an effort to get a good, restful night sleep for her. We shall see tomorrow.
After a slow and sleepy morning Piper perked up considerably and even chose to get out of bed. This is the first time in 5 days that her feet have touched the ground. And she did a little walking around and a lot of playing with her play kitchen and dolls while standing. While she still refuses anything by mouth to eat or drink she willingly takes her oral meds. No fevers. No counts. It was apparent that Piper needed a blood transfusion when she had not one, but three black out episodes before 2:00 pm. For some reason whenever Pipers hemoglobin gets below 9.5 or do, she struggles to catch her breathe when crying, resulting in fainting. This is frightening of course, but easily remedied by her transfusion. Score one for me being " an attentive parent" according to Dr. Chang, although it was actually a nurse at Scottish Rite who found the connection between low hemoglobin and fainting spells. ...many thanks to her indeed!
Both my mom and dad came to visit today and I am ever so glad to have them walking right along with my family as support. I cannot fathom doing this without their selfless help and prayers. And not only them, but each of you who read, pray, mail us notes, visit, hug, send meals and love on the four of us. It means the world to me even though I am sinfully bad at thank you notes...that and less coca-cola are my two New Years resolutions so perhaps that will improve. So a million thanks even when I forget to say it.
And today was a good day. Sleep continues to be a struggle for her...no less than 4 times last night I was up with her which is not uncommon but for some reason Piper is insistent that we stand and hold her....and that is exhausting. I worked today on other options to help her continue to feel secure and to allow Chad and I to still sleep a little. So far she is enjoying the whole " sleeping on mommy's chest like an infant" position, which is better than the alternative. We also elected to have Benadryl given to her prior to bedtime in an effort to get a good, restful night sleep for her. We shall see tomorrow.
After a slow and sleepy morning Piper perked up considerably and even chose to get out of bed. This is the first time in 5 days that her feet have touched the ground. And she did a little walking around and a lot of playing with her play kitchen and dolls while standing. While she still refuses anything by mouth to eat or drink she willingly takes her oral meds. No fevers. No counts. It was apparent that Piper needed a blood transfusion when she had not one, but three black out episodes before 2:00 pm. For some reason whenever Pipers hemoglobin gets below 9.5 or do, she struggles to catch her breathe when crying, resulting in fainting. This is frightening of course, but easily remedied by her transfusion. Score one for me being " an attentive parent" according to Dr. Chang, although it was actually a nurse at Scottish Rite who found the connection between low hemoglobin and fainting spells. ...many thanks to her indeed!
Both my mom and dad came to visit today and I am ever so glad to have them walking right along with my family as support. I cannot fathom doing this without their selfless help and prayers. And not only them, but each of you who read, pray, mail us notes, visit, hug, send meals and love on the four of us. It means the world to me even though I am sinfully bad at thank you notes...that and less coca-cola are my two New Years resolutions so perhaps that will improve. So a million thanks even when I forget to say it.
Wednesday, January 4, 2012
Day 7
I'm back. I went home Monday night to spend some time with Linley and get her prepped for school resuming. Also, to walk around barefoot, enjoy the fresh air and to do laundry. All things that I miss massively by being here at the hospital. All things that hopefully are around the corner...closer and closer each day.
After a few rough days and an increase in the fentanyl, Piper has perked up today. From Saturday until this morning we saw much more mucositis, a lot less sleeping, high fevers and a general feeling of exhaustion and frustration. Both for Piper and for Chad and I. Today Piper is feeling a little more perky. She has given us a few sweet smiles and has sung a few sweet songs. Don't get me wrong, she is still very much dealing with the side effects of radiation, chemo and of course this transplant. Her ANC is still down, as it should be. The cultures from Mondays fever has not grown anything so that is a huge sigh of relief although she continues to randomly have low grade ones. And surprisingly, Pipers CMV levels have actually gone down to 100 from 700 last week... I was hoping to just keep them from sky rocketing until her counts began to recover...but this was a good shock to us. After receiving platelets Sunday night, the amount of blood we are seeing in her saliva is less and if you really want to know more than you need, her stools have gone from almost black to the normal yellowy loose mess we know and love. Liver and kidney functions are staying within the normal range and she responded well to the dose of Lasix given a few days ago to keep the extra fluid off her little body. Sleep continues to be a struggle as she wakes often in the night as well as the fact that she has gotten on the typical hospital schedule of staying up majorly late and sleeping until 11:00 the next day and napping sporadically at best. This would not be nearly the issue if Chad and I were on the same wonky schedule but we are still very much running back and forth between Piper and this life and Linley and her life.
So that's where things are. Piper is a trooper. I though, am at a loss as to whether I want her to get more side effects as evidence of sorts that this is working or whether to count my blessings that she is handling this on the good side of ugly. This whole wait and see method is incredibly difficult for a woman like me who would much rather be the one making choices and bossing things around than the one who is hoping and praying for the best while having nothing to do with the details. Keeping things out of my control is incredibly frustrating but I am learning a lot about trusting God, trusting Chad and trusting the doctors and nurses who have been put in this place for Piper.
After a few rough days and an increase in the fentanyl, Piper has perked up today. From Saturday until this morning we saw much more mucositis, a lot less sleeping, high fevers and a general feeling of exhaustion and frustration. Both for Piper and for Chad and I. Today Piper is feeling a little more perky. She has given us a few sweet smiles and has sung a few sweet songs. Don't get me wrong, she is still very much dealing with the side effects of radiation, chemo and of course this transplant. Her ANC is still down, as it should be. The cultures from Mondays fever has not grown anything so that is a huge sigh of relief although she continues to randomly have low grade ones. And surprisingly, Pipers CMV levels have actually gone down to 100 from 700 last week... I was hoping to just keep them from sky rocketing until her counts began to recover...but this was a good shock to us. After receiving platelets Sunday night, the amount of blood we are seeing in her saliva is less and if you really want to know more than you need, her stools have gone from almost black to the normal yellowy loose mess we know and love. Liver and kidney functions are staying within the normal range and she responded well to the dose of Lasix given a few days ago to keep the extra fluid off her little body. Sleep continues to be a struggle as she wakes often in the night as well as the fact that she has gotten on the typical hospital schedule of staying up majorly late and sleeping until 11:00 the next day and napping sporadically at best. This would not be nearly the issue if Chad and I were on the same wonky schedule but we are still very much running back and forth between Piper and this life and Linley and her life.
So that's where things are. Piper is a trooper. I though, am at a loss as to whether I want her to get more side effects as evidence of sorts that this is working or whether to count my blessings that she is handling this on the good side of ugly. This whole wait and see method is incredibly difficult for a woman like me who would much rather be the one making choices and bossing things around than the one who is hoping and praying for the best while having nothing to do with the details. Keeping things out of my control is incredibly frustrating but I am learning a lot about trusting God, trusting Chad and trusting the doctors and nurses who have been put in this place for Piper.
Sunday, January 1, 2012
Moving into crappy-ville
Day 4
And the mucositis is here. If I was not able to tell solely by the phlegmy coughing, I would see for sure in the copious amount of mucous she is spitting up...and today it's tinged with blood, another sure sign of open sores down in her mouth and throat. Her eating has stopped all together though every so often she will attempt a nibble of this or that. The good thing ( is there ever a good thing about bloody phlegm???) is that this is totally normal. As I have said before, Piper will get much worse before those life saving cells kick it into high gear and start making her stronger than ever before. We just have to go through crappy-ville to get there.
Piper is officially neutropenic, meaning she has no white cells distinguishable. This (again) is the goal but it puts her at am extremely high risk for infection and we are being ever more diligent about bathing, mouth rinses and hand washing. Piper has not had much energy today though she did have time to pout when we ran out of dresses and nightgowns this morning and I was only able to offer her t-shirts...she really is the typical two year old despite how she may appear. Napping was elusive as each time she would fall asleep she would begin choking and that would waken her. Not shockingly she is no fan of the mouth suction but it is ready and waiting should she find It more a help than a bother. Piper has been given a dose of morphine tonight to allow her to rest and we will take each day and pain as it comes. Around here nobody looks at you like your nuts for requesting lortab or morphine, in fact they prefer you begin giving it at the first sign of pain rather than allowing these little bodies to work harder than necessary.
It seems she may be working on a fever but it's kind of dancing between the real deal and playing around. If she does spike in the night they will draw blood work and begin antibiotics while waiting results. And she is in need of platelets so that will be given sometimes after the midnight labs are read. All in all its been a decent day. Some smiles and silliness and attitude, yet still many signs that Piper is slowing down.
Seven years ago when I first married into the Needham family I learned of the southern tradition of eating a specific New Years meal...collard greens (money), pork (moving forward), cornbread (happiness), black eyed peas (good luck) and peach cobbler (health) for dessert. Each year that we were around them, I would chow down on his Granny's amazing cooking and laugh about the seriousness some take tradition. Well, this year I had NONE of the above foods for dinner and I am hoping this will be the year I see SOME of the above blessings...reverse psychology from this tired and yet still very optimistic woman.
And the mucositis is here. If I was not able to tell solely by the phlegmy coughing, I would see for sure in the copious amount of mucous she is spitting up...and today it's tinged with blood, another sure sign of open sores down in her mouth and throat. Her eating has stopped all together though every so often she will attempt a nibble of this or that. The good thing ( is there ever a good thing about bloody phlegm???) is that this is totally normal. As I have said before, Piper will get much worse before those life saving cells kick it into high gear and start making her stronger than ever before. We just have to go through crappy-ville to get there.
Piper is officially neutropenic, meaning she has no white cells distinguishable. This (again) is the goal but it puts her at am extremely high risk for infection and we are being ever more diligent about bathing, mouth rinses and hand washing. Piper has not had much energy today though she did have time to pout when we ran out of dresses and nightgowns this morning and I was only able to offer her t-shirts...she really is the typical two year old despite how she may appear. Napping was elusive as each time she would fall asleep she would begin choking and that would waken her. Not shockingly she is no fan of the mouth suction but it is ready and waiting should she find It more a help than a bother. Piper has been given a dose of morphine tonight to allow her to rest and we will take each day and pain as it comes. Around here nobody looks at you like your nuts for requesting lortab or morphine, in fact they prefer you begin giving it at the first sign of pain rather than allowing these little bodies to work harder than necessary.
It seems she may be working on a fever but it's kind of dancing between the real deal and playing around. If she does spike in the night they will draw blood work and begin antibiotics while waiting results. And she is in need of platelets so that will be given sometimes after the midnight labs are read. All in all its been a decent day. Some smiles and silliness and attitude, yet still many signs that Piper is slowing down.
Seven years ago when I first married into the Needham family I learned of the southern tradition of eating a specific New Years meal...collard greens (money), pork (moving forward), cornbread (happiness), black eyed peas (good luck) and peach cobbler (health) for dessert. Each year that we were around them, I would chow down on his Granny's amazing cooking and laugh about the seriousness some take tradition. Well, this year I had NONE of the above foods for dinner and I am hoping this will be the year I see SOME of the above blessings...reverse psychology from this tired and yet still very optimistic woman.
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