Almost there. Only 5 more minutes until the calendar switches to 2012 and we wish 2011 good bye. Is it normal to feel nostalgic? I'm not a nostalgic woman by nature but there is something poignant about a new year and the options it brings when one is lying in bed with their two year old quietly snoring. And if your sweet two year old is fighting for her life and being brought to the brink in order to do so, well...the nostalgia kicks in. Tears do too but we ration those out pretty well around here.
So many things happened in this family in 2011.
Piper was super ill with cmv, she spent 7 weeks in inpatient rehab learning to reuse the muscles necessary to sit up, she completed treatment, she began taking steps, she relapsed, she began taking more steps, she learned how to be normal and she is currently in the midst of what we hope to be a life saving none marrow transplant.
Linley had a rollar skating 6 th birthday party, she began to grow her hair out for Locks of Love, she conqured the monkey bars, she learned to swim and dive both, she stopped wearing only skirts, she read 75 books for the summertime reading program at the library and she asked Jesus to come live in her wonderful little heart.
Chad and I have moved yet again for the 6th time in our 7 years of marriage and for the 3rd time since Pipers diagnosis two years ago. Chad continues to take as many classes as he can while balancing Piper and Linley and even sometimes me. He worked the overnight shift often this summer and learned quickly how to draw the curtains and sleep in the middle of the day. We joined a church and chose to commit our family to a grace filled community whom have adopted us and loved us. We have learned that one vehicle is suffice for our little family. We have learned that we are jerks to each other when life gets bumpy. I have found out that old race car seats can be made into an office chair and Chad has learned that I can easily rearrange a room in the time it takes him to go to the grocery store with the girls. I've learned that having 4 or 5 hours of sleep a night can be just fine, thanks to my dad and those genes I inherited from him. And Chad has learned that he can not cope on the schedule he had as a teenager...but who of us can?
Mostly I think our family has learned that Gods grace truly is sufficient for me...and us.
Next year I pray for big miracles and small alike. I want health. I want simplicity. I want another child. I want to know hear the realization that we made this solely by Gods grace to constantly ring in my head. How else will I appreciate any of the blessings I know will come my way in the next 365 days and more if I don't compare them to the dark days that God has already carried me through?
So thank you sweet Jesus for you this year. For being real. And holding me up while I await brighter days...
Saturday, December 31, 2011
+2
It's my night with Linley at the Ronald McDonald house here in Atlanta. Because both her and Chad are out of class for the Christmas season we are doing a lot of trading off of the girls...it's good that way, no one becomes too spent, hungry or bored. Time with each girl is so different but still so special. Have I mentioned what amazing girls I have lately? Or today? They really are.
Piper continues to do well. We are seeing her slow down as far as energy resulting in some mega naps. She is not eating but thankfully the NG tube and the TPN are intended just for this reason. While I don't really consider it throwing up, she is bringing up a lot of clear, thick mucous which we assume are just signs of the mucositis beginning in the GI tract. She has her nightly oatmeal bath, she does her mouth rises four times a day and she loves when we put lotion on her little legs and body. Each diaper change is done using mineral oil and cloth instead of alcohol bases baby wipes and each diaper change also ends with liberal slathering of sensi-care. All of these steps are taken to prevent problems with bacteria and/ or germs...our biggest fear until she engrafts and we see white cells here for the fighting.
Linley is also doing well. I know she is hearing a lot of what is being said over her head when she asks how Pipers "electricity" (radiation) is going. Tonight we were able to visit with one of my favorite oncology moms and her daughter Lindsay who is +36(????) of her own bone marrow transplant. They are currently staying here at the Ronald McDonald house in one of the transplant apartments and it was good for Linley to go see how that looked and what we have planned for Piper when she engrafts and is able to leave the unit. Plus, Lindsay is just an amazingly cool 12 year old who happens to share Linleys birthday so I feel they are destined to be friends, much like myself and Sara.
Tomorrow I plan to sleep in with Linley and then we will do the clean up, pack up and check out here. I'm thinking maybe a movie or a park for the afternoon and then after Piper is done napping I will relieve Chad and he and Linley will head home for the weekend and for Linleys basketball camp on Monday. Chad doesn't start class until the week after so we will continue to do the two days on and two days off until next week in which we will do me at Egleston with Piper Monday thru Friday and then Chad there with her on the weekends. Hopefully Piper will engraft quickly and will be moved to the Ronald McDonald houses own transplant apartment of which Linley will be allowed to join us and my little family will be together again...
...one sweet day, prayerfully not too far away.
Piper continues to do well. We are seeing her slow down as far as energy resulting in some mega naps. She is not eating but thankfully the NG tube and the TPN are intended just for this reason. While I don't really consider it throwing up, she is bringing up a lot of clear, thick mucous which we assume are just signs of the mucositis beginning in the GI tract. She has her nightly oatmeal bath, she does her mouth rises four times a day and she loves when we put lotion on her little legs and body. Each diaper change is done using mineral oil and cloth instead of alcohol bases baby wipes and each diaper change also ends with liberal slathering of sensi-care. All of these steps are taken to prevent problems with bacteria and/ or germs...our biggest fear until she engrafts and we see white cells here for the fighting.
Linley is also doing well. I know she is hearing a lot of what is being said over her head when she asks how Pipers "electricity" (radiation) is going. Tonight we were able to visit with one of my favorite oncology moms and her daughter Lindsay who is +36(????) of her own bone marrow transplant. They are currently staying here at the Ronald McDonald house in one of the transplant apartments and it was good for Linley to go see how that looked and what we have planned for Piper when she engrafts and is able to leave the unit. Plus, Lindsay is just an amazingly cool 12 year old who happens to share Linleys birthday so I feel they are destined to be friends, much like myself and Sara.
Tomorrow I plan to sleep in with Linley and then we will do the clean up, pack up and check out here. I'm thinking maybe a movie or a park for the afternoon and then after Piper is done napping I will relieve Chad and he and Linley will head home for the weekend and for Linleys basketball camp on Monday. Chad doesn't start class until the week after so we will continue to do the two days on and two days off until next week in which we will do me at Egleston with Piper Monday thru Friday and then Chad there with her on the weekends. Hopefully Piper will engraft quickly and will be moved to the Ronald McDonald houses own transplant apartment of which Linley will be allowed to join us and my little family will be together again...
...one sweet day, prayerfully not too far away.
Thursday, December 29, 2011
Day +1
Here we go, my friends. All that can be done has been done. I have typed up a post about Pipers transplant from yesterday but am having problems uploading pictures and really, you need pictures to see how awesomely amazing this was. Hopefully it will be up and running tomorrow.
Today marked day +1 and is the first day that the donors cells are wandering Pipers little body. Hopefully they will like what they see and willl chose to reside there forever. Time will tell. I can tell you though that Piper is doing wonderfully. The cultures came back from the fevers she has on Monday night as E.Coli...but the next days cultures didn't grow anything and they know the "umbrella" antibiotic they put her on as soon as she spiked is sensitive to E.Coli. They chalked it up to the ends of her line landing in her diaper which is disgusting but thankfully over. She has had no fevers since then. The drs decided to put her on another immunoglobulin which targets CMV because while her number haven't gone up, they also have not gone down. Hopefully this will help keep them steady until her body is strong enough to begin fighting it off again. Piper has thrown up once today with a lot of mucus so we think the mucositis ( mouth sores) are beginning. Everything we can see on her mouth and throat look fine but it begins way down in the GI tract where we cannot see. This is totally normal and is to be expected. Piper will have to get worse before she is able to become stronger...our prayer is that she engrafts quickly and those beautiful white blood cells can work their magic before any of the potential side effects worsen.
I was asked a few times today what engraftment meant. It means that her body is beginning to produce cells white blood cells again after being destroyed by the radiation and chemo. Once they see three days in a row of an ANC over 500 they consider her engrafted...this is good because it's the white cells that will help Piper to fight off infection and side effects that we know are coming. Engraftment can take place anytime from day 10 to day 40 although they feel like Piper falls into the sooner category because of her perfect 8/8 donor and the large quantity of marrow that was donated and used. I sure hope so. I have followed quite a few friends as they have maneuvered the transplant path and it is scary. I have glimpsed how bad this can get but I am hopeful that Piper will continue to amaze me and everyone around with her resiliency and ability to overcome odds.
Today marked day +1 and is the first day that the donors cells are wandering Pipers little body. Hopefully they will like what they see and willl chose to reside there forever. Time will tell. I can tell you though that Piper is doing wonderfully. The cultures came back from the fevers she has on Monday night as E.Coli...but the next days cultures didn't grow anything and they know the "umbrella" antibiotic they put her on as soon as she spiked is sensitive to E.Coli. They chalked it up to the ends of her line landing in her diaper which is disgusting but thankfully over. She has had no fevers since then. The drs decided to put her on another immunoglobulin which targets CMV because while her number haven't gone up, they also have not gone down. Hopefully this will help keep them steady until her body is strong enough to begin fighting it off again. Piper has thrown up once today with a lot of mucus so we think the mucositis ( mouth sores) are beginning. Everything we can see on her mouth and throat look fine but it begins way down in the GI tract where we cannot see. This is totally normal and is to be expected. Piper will have to get worse before she is able to become stronger...our prayer is that she engrafts quickly and those beautiful white blood cells can work their magic before any of the potential side effects worsen.
I was asked a few times today what engraftment meant. It means that her body is beginning to produce cells white blood cells again after being destroyed by the radiation and chemo. Once they see three days in a row of an ANC over 500 they consider her engrafted...this is good because it's the white cells that will help Piper to fight off infection and side effects that we know are coming. Engraftment can take place anytime from day 10 to day 40 although they feel like Piper falls into the sooner category because of her perfect 8/8 donor and the large quantity of marrow that was donated and used. I sure hope so. I have followed quite a few friends as they have maneuvered the transplant path and it is scary. I have glimpsed how bad this can get but I am hopeful that Piper will continue to amaze me and everyone around with her resiliency and ability to overcome odds.
Tuesday, December 27, 2011
-1
Tomorrow is it. The big day. My sister said she was sure I was terrified but, honestly I am not. One thing that I have learned over and over the last few years is that the known is scary enough to not stress over the unknown. Of course I am not thrilled with what we will be putting Piper through but I am even less thrilled with the alternative of letting leukemia take over and win.
No one can tell me what time this big ordeal shall take place so I cannot tell you a time or anything to pray. I imagine it will be a little like a normal day of dirty diapers, eating tater tots and playing in the playroom when all of a sudden the nurse shall walk in with a little bag of marrow and the transplant will begin. I believe it can take about 3 or 4 hours and Piper will be closely monitored the whole time. She will also probably smell like either creamed corn or garlic due to the preservatives that are used. And it will definitely be anti climatic...but hopefully it will be the beginning of a life free from leukemia.
Please sweet Jesus.
At this moment I am cuddled up to Miss Linley after a busy day at the Ga Aquarium with Chad. We attempted to make it one last celebration prior to the rigors of healing with transplant and the very real possibility of side effects keeping us from Linley for this short season. And can I just tell you what a wonderful mother I have? She is the only other person who is able to handle the details of Piper in such a way that Chad and I are able to walk away for a day and not stress. Our small family relys on her immensely and she never fails us.
Piper herself is hanging in there. She ran fevers last night off and on so she was reaccesed about 1:00 am so they could draw cultures from her port....she was a trooper about being woken with a needle coming at her chest. The entire night was just rough as she had monitors going off all night and a loud nurse and lots of poop and the getting a blood transfusion somewhere around 3:00am. We added insult to injury when she had a NG tube placed when she woke up because her appetite is slowing down and they prefer her gut to be moving, even just a little. Piper will also begin TPN, which is total nutrients given through her CVL in addition to the nutrition given through her NG tube and into her little digestive tract. She is still snacking and drinking some but it won't be enough and will probably stop all together once mouth sores and the other side effects kick in.
Good times ahead of us, I tell you.
I finally made it to Target to purchase the adaptor for my cameras SD card and my ipad. This means that I will be adding pictures to my posts from here on out. I will also be catching up on a lot of old posts and pictures from the last few weeks. What I won't be doing is sleeping, seeing much of Linley or completing thoughts...but I will be moving Piper towards a Cure and that will help it all even out in the end. ,
No one can tell me what time this big ordeal shall take place so I cannot tell you a time or anything to pray. I imagine it will be a little like a normal day of dirty diapers, eating tater tots and playing in the playroom when all of a sudden the nurse shall walk in with a little bag of marrow and the transplant will begin. I believe it can take about 3 or 4 hours and Piper will be closely monitored the whole time. She will also probably smell like either creamed corn or garlic due to the preservatives that are used. And it will definitely be anti climatic...but hopefully it will be the beginning of a life free from leukemia.
Please sweet Jesus.
At this moment I am cuddled up to Miss Linley after a busy day at the Ga Aquarium with Chad. We attempted to make it one last celebration prior to the rigors of healing with transplant and the very real possibility of side effects keeping us from Linley for this short season. And can I just tell you what a wonderful mother I have? She is the only other person who is able to handle the details of Piper in such a way that Chad and I are able to walk away for a day and not stress. Our small family relys on her immensely and she never fails us.
Piper herself is hanging in there. She ran fevers last night off and on so she was reaccesed about 1:00 am so they could draw cultures from her port....she was a trooper about being woken with a needle coming at her chest. The entire night was just rough as she had monitors going off all night and a loud nurse and lots of poop and the getting a blood transfusion somewhere around 3:00am. We added insult to injury when she had a NG tube placed when she woke up because her appetite is slowing down and they prefer her gut to be moving, even just a little. Piper will also begin TPN, which is total nutrients given through her CVL in addition to the nutrition given through her NG tube and into her little digestive tract. She is still snacking and drinking some but it won't be enough and will probably stop all together once mouth sores and the other side effects kick in.
Good times ahead of us, I tell you.
I finally made it to Target to purchase the adaptor for my cameras SD card and my ipad. This means that I will be adding pictures to my posts from here on out. I will also be catching up on a lot of old posts and pictures from the last few weeks. What I won't be doing is sleeping, seeing much of Linley or completing thoughts...but I will be moving Piper towards a Cure and that will help it all even out in the end. ,
" wherever you are"
Another night of insomnia. If history is to repeat itself, I will struggle with sleep for a few weeks getting by on 4 or 5 hours at night until at some point I will pass out and sleep for 12 hours straight. I know many a doctor will warn me against this but if a wonky sleep schedule is what I get out of this messy season then so be it.
I've a lot on my mind tonight anyways.
I've had this quote in my head today..."wherever you are, be all there! Live to the hilt every situation you believe to be the will of God". (Jim Eliot) I love this quote though I will confess that it was the first line that initially was singing through my head this evening. I am often forced to jump back and forth between the rigors of caring for a child in the hospital and the rigors of a a child who is well and busy. I would go flat mad if I spent my time with Linley worrying about Piper and vica versa...I have to embrace whichever lifestyle I am in the midst of and be ready and willing to twist at a moments notice into the other situation and those demands and blessings. I credit being sane today with the fact that this is how I deal.
It wasn't until I was re reading a book written by Elisabeth Eliot, the faithful widow of Jim Eliot, that I remembered the rest of this line that I so clung to. "Live to the hilt every situation you believe to be the will of God". Without getting all reformed on you, I have to say that I very much find solace in the fact that this is my life in the will of God. I have often said that I do not believe he was caught unaware by the leukemia hiding within my Piper. God didn't cover his face in surprise when Chad and I found ourselves separated and fighting...and He sure wasn't rattled when Linley was conceived before I wore a ring on my finger. His will was just being acted out. And despite the painful steps I am often required to take in order to remain in His will, I can do so in peace.
I believe that Gods one big "will" is to have our hearts love him...
deeply and frantically and only.
So tomorrow when I awake after a fitful night with Piper and her random fevers, I will have to focus on her. And then tomorrow night when I am resting with Linley I will have to allow myself the luxury of bare feet and soft pillows. And in the few, small moments I have as I walk or drive between my two blessed responsibilities I have the knowledge that despite liking this or not I am in Gods perfect will.
Some may not find this a reassuring thought but I do. I really, really, really do.
I've a lot on my mind tonight anyways.
I've had this quote in my head today..."wherever you are, be all there! Live to the hilt every situation you believe to be the will of God". (Jim Eliot) I love this quote though I will confess that it was the first line that initially was singing through my head this evening. I am often forced to jump back and forth between the rigors of caring for a child in the hospital and the rigors of a a child who is well and busy. I would go flat mad if I spent my time with Linley worrying about Piper and vica versa...I have to embrace whichever lifestyle I am in the midst of and be ready and willing to twist at a moments notice into the other situation and those demands and blessings. I credit being sane today with the fact that this is how I deal.
It wasn't until I was re reading a book written by Elisabeth Eliot, the faithful widow of Jim Eliot, that I remembered the rest of this line that I so clung to. "Live to the hilt every situation you believe to be the will of God". Without getting all reformed on you, I have to say that I very much find solace in the fact that this is my life in the will of God. I have often said that I do not believe he was caught unaware by the leukemia hiding within my Piper. God didn't cover his face in surprise when Chad and I found ourselves separated and fighting...and He sure wasn't rattled when Linley was conceived before I wore a ring on my finger. His will was just being acted out. And despite the painful steps I am often required to take in order to remain in His will, I can do so in peace.
I believe that Gods one big "will" is to have our hearts love him...
deeply and frantically and only.
So tomorrow when I awake after a fitful night with Piper and her random fevers, I will have to focus on her. And then tomorrow night when I am resting with Linley I will have to allow myself the luxury of bare feet and soft pillows. And in the few, small moments I have as I walk or drive between my two blessed responsibilities I have the knowledge that despite liking this or not I am in Gods perfect will.
Some may not find this a reassuring thought but I do. I really, really, really do.
Monday, December 26, 2011
Merry Christmas!
Do you just love how faithful I have been with my promise to blog each and every day? Yep, I bet you do.
Pat of the reason I'm not so up to date on things is the fact that not much is going on. When I left on Saturday night to spend Christmas with
Linley, Piper was just roaming the halls and playing in the playroom and pooping slot. All normal two year old behavior...well, normal two year behavior when one has cancer and is in the process of ridding their little body of those pesky cells. Her appetite is slowing down and that is to be expected. Not that I blame her because the food at the hospital leaves much to be desired and she is not allowed to eat fresh fruits or veggies or anything brought from home or from a restaurant. So basically nothing good and really, what's the fun in eating if it's nasty? She will use an ng tube when she stops eating, whether because of lack of appetite or from mucositis and such. Not looking forward to that but desperately looking forward to completeing the process.
I have thourally enjoyed my time with Linley. She held me to the promise of sleeping under the Christmas tree on Christmas Eve, thankfully I was so exhausted I was not even phased and slept like a child. We were able to FaceTime with Daddy and Piper this morning while opening presents and that was just wonderful...the rest of the day consisted of church, then IHOP for lunch since we totally forgot about a Christmas meal in the hustle and bustle of juggling the girls, and the rest of the afternoon was filled with me doing little crafts and Linley playing with her toys. We managed to watch three different christmas shows and did a great amount of cuddling on the couch. It was very relaxing but we missed the craziness of two little voices and the chaos that a busy family creates. Not a perfect Christmas but a good one.
For some crazy reason I drand 2 coca-colas for lunch and am still awake at 3:43am. But I have rearranged my living room and parts of my bedroom, I have cleaned and cleaned and I have organized anything out of place that I can get my hands on. A million thanks to Catherine for helping me out and inspiring me...thanks friend.
Tomorrow after a list of errands and laundry we will go back to Atlanta and stay at the Ronald McDonald thoughout the week since Linley is out of school as is Chad. We will take turns being with each girl and hopefully once school is back in progress we won't all be so tired already and will be able and ready to take on transplant. I sound very certain of myself today but truly it is scary. I have a friend from the support group I am on for these amazing infant leukemia kiddos and her daughter is currently in the midst of transplant. She has completed all her treatment and is in the hospital playing the waiting game. The last few days have been very difficult and I have spend a lot of time praying for Paxten as well as her faithful mommy and daddy. Check out her caringbridge because she is an incredibly adorable little girl who deserves her own cure.
www.caringbridge.org/visit/paxtenpearson
And leave a note...we like reading notes, guys....its encouraging and just plain nice to know that not only are people watching our struggles but also wanting to support us. So show Paxten some support and a million thanks for rolling with us. Even when I have insomnia but an incrediblly clean apartment at 4:00 am. :)
Pat of the reason I'm not so up to date on things is the fact that not much is going on. When I left on Saturday night to spend Christmas with
Linley, Piper was just roaming the halls and playing in the playroom and pooping slot. All normal two year old behavior...well, normal two year behavior when one has cancer and is in the process of ridding their little body of those pesky cells. Her appetite is slowing down and that is to be expected. Not that I blame her because the food at the hospital leaves much to be desired and she is not allowed to eat fresh fruits or veggies or anything brought from home or from a restaurant. So basically nothing good and really, what's the fun in eating if it's nasty? She will use an ng tube when she stops eating, whether because of lack of appetite or from mucositis and such. Not looking forward to that but desperately looking forward to completeing the process.
I have thourally enjoyed my time with Linley. She held me to the promise of sleeping under the Christmas tree on Christmas Eve, thankfully I was so exhausted I was not even phased and slept like a child. We were able to FaceTime with Daddy and Piper this morning while opening presents and that was just wonderful...the rest of the day consisted of church, then IHOP for lunch since we totally forgot about a Christmas meal in the hustle and bustle of juggling the girls, and the rest of the afternoon was filled with me doing little crafts and Linley playing with her toys. We managed to watch three different christmas shows and did a great amount of cuddling on the couch. It was very relaxing but we missed the craziness of two little voices and the chaos that a busy family creates. Not a perfect Christmas but a good one.
For some crazy reason I drand 2 coca-colas for lunch and am still awake at 3:43am. But I have rearranged my living room and parts of my bedroom, I have cleaned and cleaned and I have organized anything out of place that I can get my hands on. A million thanks to Catherine for helping me out and inspiring me...thanks friend.
Tomorrow after a list of errands and laundry we will go back to Atlanta and stay at the Ronald McDonald thoughout the week since Linley is out of school as is Chad. We will take turns being with each girl and hopefully once school is back in progress we won't all be so tired already and will be able and ready to take on transplant. I sound very certain of myself today but truly it is scary. I have a friend from the support group I am on for these amazing infant leukemia kiddos and her daughter is currently in the midst of transplant. She has completed all her treatment and is in the hospital playing the waiting game. The last few days have been very difficult and I have spend a lot of time praying for Paxten as well as her faithful mommy and daddy. Check out her caringbridge because she is an incredibly adorable little girl who deserves her own cure.
www.caringbridge.org/visit/paxtenpearson
And leave a note...we like reading notes, guys....its encouraging and just plain nice to know that not only are people watching our struggles but also wanting to support us. So show Paxten some support and a million thanks for rolling with us. Even when I have insomnia but an incrediblly clean apartment at 4:00 am. :)
Friday, December 23, 2011
-5
Another day down. And yes I do have a literal calendar on the wall that I daily mark off...closer, closer and closer.
Piper completed her sixth radiation sessions yesterday at 6:30pm and none too soon. While we had no problems (thankfully) with the actual radiation it was difficult keeping her happy in this tiny room without snacking. Not impossible but difficult. Today when she woke up Piper was able to have a pancake which was only edible while dipping in syrup and some rice chex dipped in my chobani...I'm sensing a typical two year old trend of dipping and sharing food. I know at some point soon she will not be able to eat and will require an ng tube so at this moment I am contented to have her snack her way through the day. And through my plate.
All of Pipers bloodwork and cultures came back negative so she is no longer in isolation in her room. Of course, this being the transplant unit she is required to wear a mask outside of her room and she is not allowed out of the unit but still it's better to walk laps and play in the playroom than to drive mommy nuts. Major thanks to all the lovelies who have sent Piper little gifts...they are being hidden and are quick to come out when the moods gets grumpy. Huge, huge, huge help to me!
Today Piper began the chemotherapy portion of the work up regime for transplant. She is recently on hour 15 of a 24 hour transfusion of etopisode (vp-16). Tomorrow and Sunday she will have 2 hour infusions of cytoxan and the two days of rest before Transplant day. And she continues to feel well. Still playing and running around. No nausea or vomit. We stay up on her four times a day oral rising out and attempt daily bathing though that's a hot mess with 3 lines coming out of her chest that cannot get wet. Oh yes, her port was reaccesed with no problem and will be deaccessed when it is time to change the dressing on her CVL because the two have tegederm (tape) that is sealed together.
Like I mentioned earlier in this post, thanks for the gifts. Thanks to my parents, my sister, to the Halls and to Christy with Cancer Warriors for the visits...it means a lot to me. And to everyone who is keeping up with this crazy ride we are on, thanks as well. We're going to make it through this and you now have seats to watch the ride. I know it's going to be crazy but I also know we continue to thrash about still seated in Gods hands and will.
Piper completed her sixth radiation sessions yesterday at 6:30pm and none too soon. While we had no problems (thankfully) with the actual radiation it was difficult keeping her happy in this tiny room without snacking. Not impossible but difficult. Today when she woke up Piper was able to have a pancake which was only edible while dipping in syrup and some rice chex dipped in my chobani...I'm sensing a typical two year old trend of dipping and sharing food. I know at some point soon she will not be able to eat and will require an ng tube so at this moment I am contented to have her snack her way through the day. And through my plate.
All of Pipers bloodwork and cultures came back negative so she is no longer in isolation in her room. Of course, this being the transplant unit she is required to wear a mask outside of her room and she is not allowed out of the unit but still it's better to walk laps and play in the playroom than to drive mommy nuts. Major thanks to all the lovelies who have sent Piper little gifts...they are being hidden and are quick to come out when the moods gets grumpy. Huge, huge, huge help to me!
Today Piper began the chemotherapy portion of the work up regime for transplant. She is recently on hour 15 of a 24 hour transfusion of etopisode (vp-16). Tomorrow and Sunday she will have 2 hour infusions of cytoxan and the two days of rest before Transplant day. And she continues to feel well. Still playing and running around. No nausea or vomit. We stay up on her four times a day oral rising out and attempt daily bathing though that's a hot mess with 3 lines coming out of her chest that cannot get wet. Oh yes, her port was reaccesed with no problem and will be deaccessed when it is time to change the dressing on her CVL because the two have tegederm (tape) that is sealed together.
Like I mentioned earlier in this post, thanks for the gifts. Thanks to my parents, my sister, to the Halls and to Christy with Cancer Warriors for the visits...it means a lot to me. And to everyone who is keeping up with this crazy ride we are on, thanks as well. We're going to make it through this and you now have seats to watch the ride. I know it's going to be crazy but I also know we continue to thrash about still seated in Gods hands and will.
Wednesday, December 21, 2011
-7
Four out of Six of the radiation treatments are done. Almost there. I am so happy to be working our way through those things. Not that they have been horrible but rather because she has two sessions each day, one at 7am and another at 3pm. She is unable to eat or drink anything prior which is no problem with the first session but is a doozy between sessions when she is tired and hungry. We are keeping her pretty busy but its only been since today that she is allowed to even leave the room although she cannot still go to the playroom because of her lingering cough. So we suit her up in a yellow gown and a blue mask and off she roams. Thankfully they have allowed us to bring the play kitchen from the playroom into her room and she has been miss busy making us coffee and cheese...the only things she offers so I may not have high hopes for her being my susie homemaker. oh well.
Other than that we continue to have problems getting blood return from her port. Not sure what the deal is but I wager that it was partially the fault of the lady who accessed her in surgery. She was ridiculously bad at it. Today when Piper was sedated for radiation they attempted to access her and were able to get some TPA (clot busting agent) into her port and will leave it there until tomorrow morning when she is sedated again to see if that helps it along. If they are still unable to get blood return then they plan to remove the port before tranplant and neutropenia. Remember that her CVL is a double lumen so she will still have multiple lines to do transfusions and antibiotics and chemotherapy.
She is sleeping really well at night and I am pulling the bed up to hers so that she can still reach out and touch me if she wakes up but so that I dont have to spend the next 4-6 weeks sleeping on my left side. I am grateful for that one. Pipers appetite is slowing down but she does not seem nauseaus. I told a friend today that I know things will get exposentially worse so I am thankful for each day that goes by so smoothly.
I am thinking alot of the verse in Matthew (6:34) that says "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Its a good reminder to all of us when we get fearful of what is to come, both imagined and real. I also like to channel Scarlett O'Hara and say “Fiddle-dee-dee! I won’t worry about that today. I’ll worry about that tomorrow. After all, tomorrow is another day!” ...'course I leave out the fiddle-dee-dee most of the time unless one or both of my girls are having meltdowns in which case I belt that out and they stop what they are doing for a minute and look at me like I am nuts. Whatever slows a meltdown works for me.
One week from today and it will be Pipers re-birthday. A big day...one that cannot get here soon enough. And meanwhile we will continue to take each hour as it comes and attempt to not go mad in this tiny room with a silly little two year old.
Other than that we continue to have problems getting blood return from her port. Not sure what the deal is but I wager that it was partially the fault of the lady who accessed her in surgery. She was ridiculously bad at it. Today when Piper was sedated for radiation they attempted to access her and were able to get some TPA (clot busting agent) into her port and will leave it there until tomorrow morning when she is sedated again to see if that helps it along. If they are still unable to get blood return then they plan to remove the port before tranplant and neutropenia. Remember that her CVL is a double lumen so she will still have multiple lines to do transfusions and antibiotics and chemotherapy.
She is sleeping really well at night and I am pulling the bed up to hers so that she can still reach out and touch me if she wakes up but so that I dont have to spend the next 4-6 weeks sleeping on my left side. I am grateful for that one. Pipers appetite is slowing down but she does not seem nauseaus. I told a friend today that I know things will get exposentially worse so I am thankful for each day that goes by so smoothly.
I am thinking alot of the verse in Matthew (6:34) that says "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Its a good reminder to all of us when we get fearful of what is to come, both imagined and real. I also like to channel Scarlett O'Hara and say “Fiddle-dee-dee! I won’t worry about that today. I’ll worry about that tomorrow. After all, tomorrow is another day!” ...'course I leave out the fiddle-dee-dee most of the time unless one or both of my girls are having meltdowns in which case I belt that out and they stop what they are doing for a minute and look at me like I am nuts. Whatever slows a meltdown works for me.
One week from today and it will be Pipers re-birthday. A big day...one that cannot get here soon enough. And meanwhile we will continue to take each hour as it comes and attempt to not go mad in this tiny room with a silly little two year old.
Monday, December 19, 2011
Transplant -9
Today we stand 9 days until Transplant so we call that day -9. Each day we get closer and count down until Transplant day, which is considered day 0 and subsequent days are +. As in day +1, day +2 and so forth. Hopefully Piper will be able to discharged around day+30 or so and will be able to return home at day +100 or so. And will be cancer free still at day +365 and heading down a path of health. All of that is a long ways away and I will go mad and have a panic attack if I spend too much time thinking about all that is ahead. Sort of how I have a panic attack in my brain each time I have to park at the parking garage here which goes down a ridiculous 4 levels underground.
Today was typical of any experience with two year old, medical stuff, oh and Piper. She has been fighting off a cold for a while now...lots of snotty noses, some coughing and congestion. No fevers and each doctor who has seen Piper in the past few visits has agreed that it will pass. Of course, this morning after dropping Linley off with my mom and dad and unloading Piper and her paraphernalia we made it upstairs to surgery only to be told she had a fever. This began 2 hours of her being poked, prodded and checked out...only to finally watch the fever go away on its own. I know everyone was holding their breathe...the amount of work, coordination and detail that goes into preparing this transplant is amazing. One little kink, like an infection, can throw everything for a major loop. Praise God the surgery was a success and Piper joined us in the transplant unit a little before noon. She was pretty hungry and sleepy so after a lunch of tater tots, pedicure and pizza she took a 3 hour nap. Unfortunately because of not being able to eat this morning her zofran was missed and she threw up when she woke from her long nap. That was the turning point of the day because from that time on she was moving around the room, coloring and playing...mostly happily. Piper is especially enjoying using her double lumen lines as drum sticks on whichever solid surface is closest...silly girl. She will be in isolation in her room until the cultures taken from today clear her from the flu or other respiratory funks. Once those clears she will be allowed to roam the halls providing she wears her mask obediently. She will not leave this unit except for tests and radiation until she is discharged. Chad and I are able to come and go and guests who are healthy are free to visit but she will be slowly feeling worse and worse over the course of the next few days so that's not really appealing to most.
Pipers room is small but comfortable. There is a playroom across the hall once she is cleared to leave the room. The family lounge has an oven as well as the fridge and microwave. And the laundry room is around the corner. I think we will find ourselves adjusted just fine here. And thanks to the amazing generosity to many wonderful friends we have the iPads and FaceTime with which we were able to see sweet Linleys face this evening. I cannot tell you how incredibly great it was for all four members of this family to smile at each other...and make faces too of course. We are wild and crazy like that.
I've been asked a few times for the address here and Pipers room number. We love to hear from y'all so please feel free to send Piper cards and treats...she cannot have stuffed animals or fresh flowers or fresh fruit though so please keep that in mind for her safety.
Tranquilizers for mommy and beer for daddy would not be returned...just saying.
Piper Needham
Childrens Healthcare of Atlanta at Egleston
1405 Clifton Rd. NE Atlanta GA 30322
Room 3205 Aflac Transplant Unit.
Thanks for following us on this messy, tiring, grace filled journey.
Today was typical of any experience with two year old, medical stuff, oh and Piper. She has been fighting off a cold for a while now...lots of snotty noses, some coughing and congestion. No fevers and each doctor who has seen Piper in the past few visits has agreed that it will pass. Of course, this morning after dropping Linley off with my mom and dad and unloading Piper and her paraphernalia we made it upstairs to surgery only to be told she had a fever. This began 2 hours of her being poked, prodded and checked out...only to finally watch the fever go away on its own. I know everyone was holding their breathe...the amount of work, coordination and detail that goes into preparing this transplant is amazing. One little kink, like an infection, can throw everything for a major loop. Praise God the surgery was a success and Piper joined us in the transplant unit a little before noon. She was pretty hungry and sleepy so after a lunch of tater tots, pedicure and pizza she took a 3 hour nap. Unfortunately because of not being able to eat this morning her zofran was missed and she threw up when she woke from her long nap. That was the turning point of the day because from that time on she was moving around the room, coloring and playing...mostly happily. Piper is especially enjoying using her double lumen lines as drum sticks on whichever solid surface is closest...silly girl. She will be in isolation in her room until the cultures taken from today clear her from the flu or other respiratory funks. Once those clears she will be allowed to roam the halls providing she wears her mask obediently. She will not leave this unit except for tests and radiation until she is discharged. Chad and I are able to come and go and guests who are healthy are free to visit but she will be slowly feeling worse and worse over the course of the next few days so that's not really appealing to most.
Pipers room is small but comfortable. There is a playroom across the hall once she is cleared to leave the room. The family lounge has an oven as well as the fridge and microwave. And the laundry room is around the corner. I think we will find ourselves adjusted just fine here. And thanks to the amazing generosity to many wonderful friends we have the iPads and FaceTime with which we were able to see sweet Linleys face this evening. I cannot tell you how incredibly great it was for all four members of this family to smile at each other...and make faces too of course. We are wild and crazy like that.
I've been asked a few times for the address here and Pipers room number. We love to hear from y'all so please feel free to send Piper cards and treats...she cannot have stuffed animals or fresh flowers or fresh fruit though so please keep that in mind for her safety.
Tranquilizers for mommy and beer for daddy would not be returned...just saying.
Piper Needham
Childrens Healthcare of Atlanta at Egleston
1405 Clifton Rd. NE Atlanta GA 30322
Room 3205 Aflac Transplant Unit.
Thanks for following us on this messy, tiring, grace filled journey.
Sunday, December 18, 2011
Here we go...
The last 3 days have been so incredibly fast. Linley is done with school for Christmas, Chad completed his finals and the whole house let it a huge sigh of relief. We deliberately chose to not make plans but to hunker down at home...playing outside, watching movies and eating ridiculous amounts of ice cream. This is how the Needham crew attempts to freeze time. How we step back and remind ourselves that life is about to get oh so very hard again and wouldn't it just be nice to cuddle? ' Cause it is.
Finally tonight we ordered pizza and watched Toy Story. The girls had a bath complete with splashing and wildness.
Laundry was folded, dishes were washed, the fridge was emptied and the trash was walked to the dumpster. We were packing up and planning to move on out...not happily. Resignedly. We will do what we have to to chase Pipers cure. We have to, there is no other option but it aches my soul knowing what I am about to put Piper through. And Linley as well in a less physical but equally emotional way.
So here we go. The next step closer to a cure for Piper. Of course, sadly, each step closer to her cure is a st farther away from our comfort zone. A new hospital, new faces, new procedures and lots of new worries and fears and unknowns.
Tomorrow morning at 7:45am, Piper will have a CVL placed in her chest. She already has a port but they prefer to use a CVL and this new one will be a "double lumen" meaning it will have two lines to be used at any given time. After surgery we will be admitted and will be there at Egleston in relative isolation for anywhere from 4-6 weeks depending on how Piper does. Beginning on Tuesday (through Thursday)she will have twice daily total body radiation and beginning on Thursday (through Sunday)she will have high doses of chemotherapy intended to prepare her little body to receive the life saving cells of some amazing Eurpean woman. She will have two days off to rest before transplant day.. Pipers actual transplant will take place on the 28th. And that's when we begin to wait...wait for her body to receive the cells and pray for them to take over any cells she had left...hoping this leaves her free to begin her life cancer free. She deserves it...
This transplant come with so many risks. Both short term and long term. I have neither the time nor the desire to think about what could be on down the road. I just want the option to walk roads with Piper someday. Short term, there are many risks...things I don't want to dwell on but that I heard loud and clear when I signed the paperwork allowing them to attempt to cure my daughter. It is frightening.
Beginning tomorrow I will blog every day. Or I will really, really, really try. I cannot guarantee that it will be an easy read but Im sure it's not going to be easy to live out either. So of you are squeamish, pass on reading for a few months. And I will most definitely be saying shit more often...both literally and in the figurative " my life is really not rolling the way I had planned" sort of way. Can you deal?
Now that I have explained things and shown off that I know how to use curse words I will ask for some prayers.
1. Minimal side effects with maximum results.
2. That Pipers cmv levels do not cause more trouble.
3. That Piper fully engrafts...begins making her donors cells.
4. That Linley works through all of this...she has had some candid cries lately and I know she is hurting.
5. A lifelong cure for Piper.
And no matter what, I know that I know that I know my God is able to do big things....I hope that He does them in my Piper.
Finally tonight we ordered pizza and watched Toy Story. The girls had a bath complete with splashing and wildness.
Laundry was folded, dishes were washed, the fridge was emptied and the trash was walked to the dumpster. We were packing up and planning to move on out...not happily. Resignedly. We will do what we have to to chase Pipers cure. We have to, there is no other option but it aches my soul knowing what I am about to put Piper through. And Linley as well in a less physical but equally emotional way.
So here we go. The next step closer to a cure for Piper. Of course, sadly, each step closer to her cure is a st farther away from our comfort zone. A new hospital, new faces, new procedures and lots of new worries and fears and unknowns.
Tomorrow morning at 7:45am, Piper will have a CVL placed in her chest. She already has a port but they prefer to use a CVL and this new one will be a "double lumen" meaning it will have two lines to be used at any given time. After surgery we will be admitted and will be there at Egleston in relative isolation for anywhere from 4-6 weeks depending on how Piper does. Beginning on Tuesday (through Thursday)she will have twice daily total body radiation and beginning on Thursday (through Sunday)she will have high doses of chemotherapy intended to prepare her little body to receive the life saving cells of some amazing Eurpean woman. She will have two days off to rest before transplant day.. Pipers actual transplant will take place on the 28th. And that's when we begin to wait...wait for her body to receive the cells and pray for them to take over any cells she had left...hoping this leaves her free to begin her life cancer free. She deserves it...
This transplant come with so many risks. Both short term and long term. I have neither the time nor the desire to think about what could be on down the road. I just want the option to walk roads with Piper someday. Short term, there are many risks...things I don't want to dwell on but that I heard loud and clear when I signed the paperwork allowing them to attempt to cure my daughter. It is frightening.
Beginning tomorrow I will blog every day. Or I will really, really, really try. I cannot guarantee that it will be an easy read but Im sure it's not going to be easy to live out either. So of you are squeamish, pass on reading for a few months. And I will most definitely be saying shit more often...both literally and in the figurative " my life is really not rolling the way I had planned" sort of way. Can you deal?
Now that I have explained things and shown off that I know how to use curse words I will ask for some prayers.
1. Minimal side effects with maximum results.
2. That Pipers cmv levels do not cause more trouble.
3. That Piper fully engrafts...begins making her donors cells.
4. That Linley works through all of this...she has had some candid cries lately and I know she is hurting.
5. A lifelong cure for Piper.
And no matter what, I know that I know that I know my God is able to do big things....I hope that He does them in my Piper.
Friday, December 9, 2011
Details
In an effort to not become totally and frighteningly overwhelmed with what we have planned in the next two weeks I chose to ignore a lot f the details that I was forced to hear about earlier this week.
So far so good.
Unfortunately what I hide away always come back out and makes itself known.
I found this out today when I was laying down with Piper for her afternoon nap. She is doing fine, happy even...still, she has the cancer look. The tired and red eyes. The pale tone. The skinniness despite eating well and pooping normally. I make myself not focus on these details by covering her head with a pretty hat or throwing food at her all day but still the facts remain that within this beautiful child that I love so passionately is leukemia. It is hiding. It is going to be fought against with a vengeance but still it lurks and affects so much.
And when I laid next to her in her bed and she smiled at me and clasped her hands under her chin, as I do when I sleep, she broke my heart. I tried to keep the tears at bay because it's not the best thing for confidence boosting if mommy is lying prostrate on the floor sobbing like someone spilled my Cheerios. But still they leaked out. And continued to despite my best efforts of smiling and kissing. And she smiled and kissed me back but her forehead was furrowed and she was using her little fingers to trace the tears down my cheek. And my heart would not stop breaking.
So that was the cautious beginning of a breakdown that I surely deserve but have no time for. The appointments on Tuesday were just labs and meeting with Dr. Haight who will be one of the transplant doctors managing Pipers care. We also met with social work and a psychologist who was impressed with my families support system...which really is amazing. On Wednesday I begged my mom to come with us as we had appointments beginning at 7:30am and finishing at 3pm...everything from testing her liver, to meeting with child-life specialist, to chatting with the financial advisor, to an echocardiogram and completing this day with the frightening meeting with the radiologist. So much information and so much fear ...they are calling Piper a complicated case because she has had active CMV and because she is still not entirely disease free. Her lab work showed a slight elevation in her liver numbers so they have chosen to not give any more methotrexate or vincristine until she admits in an effort to have then heal before ravaging them. They are pleased that she is walking much more and that she is just so blasted good. And happy. And totally oblivious to all that is heading her way.
One thing that I found interesting from my meeting on Tuesday was that Piper, though she looks genetically common, actually was not an easy child to match for this transplant. I believe she had multiple options but for some reason or another they ended up with a match in Europe. Yep, Europe. The whole process is very, very, very private but we do know she is a 32 year old female. Hopefully this transplant will go as smoothly as possible and someday we will be able to get in contact with her and thank her for this amazing gift she is giving. Until then we just pray she continues to clear all the genetic and infectious disease testing. See, details that suck a person dry.
So now we continue to make big memories and take so many pictures. Irregardless of how successful this transplant is we will not have happy and healthy Piper back for a while. And Linley will not be able to love on, sleep with or boss Piper around like she should be able to...all in due time we pray. And we really, really, really pray for this to be only a dry, painful season that is followed by rejoicing and testimony.
So far so good.
Unfortunately what I hide away always come back out and makes itself known.
I found this out today when I was laying down with Piper for her afternoon nap. She is doing fine, happy even...still, she has the cancer look. The tired and red eyes. The pale tone. The skinniness despite eating well and pooping normally. I make myself not focus on these details by covering her head with a pretty hat or throwing food at her all day but still the facts remain that within this beautiful child that I love so passionately is leukemia. It is hiding. It is going to be fought against with a vengeance but still it lurks and affects so much.
And when I laid next to her in her bed and she smiled at me and clasped her hands under her chin, as I do when I sleep, she broke my heart. I tried to keep the tears at bay because it's not the best thing for confidence boosting if mommy is lying prostrate on the floor sobbing like someone spilled my Cheerios. But still they leaked out. And continued to despite my best efforts of smiling and kissing. And she smiled and kissed me back but her forehead was furrowed and she was using her little fingers to trace the tears down my cheek. And my heart would not stop breaking.
So that was the cautious beginning of a breakdown that I surely deserve but have no time for. The appointments on Tuesday were just labs and meeting with Dr. Haight who will be one of the transplant doctors managing Pipers care. We also met with social work and a psychologist who was impressed with my families support system...which really is amazing. On Wednesday I begged my mom to come with us as we had appointments beginning at 7:30am and finishing at 3pm...everything from testing her liver, to meeting with child-life specialist, to chatting with the financial advisor, to an echocardiogram and completing this day with the frightening meeting with the radiologist. So much information and so much fear ...they are calling Piper a complicated case because she has had active CMV and because she is still not entirely disease free. Her lab work showed a slight elevation in her liver numbers so they have chosen to not give any more methotrexate or vincristine until she admits in an effort to have then heal before ravaging them. They are pleased that she is walking much more and that she is just so blasted good. And happy. And totally oblivious to all that is heading her way.
One thing that I found interesting from my meeting on Tuesday was that Piper, though she looks genetically common, actually was not an easy child to match for this transplant. I believe she had multiple options but for some reason or another they ended up with a match in Europe. Yep, Europe. The whole process is very, very, very private but we do know she is a 32 year old female. Hopefully this transplant will go as smoothly as possible and someday we will be able to get in contact with her and thank her for this amazing gift she is giving. Until then we just pray she continues to clear all the genetic and infectious disease testing. See, details that suck a person dry.
So now we continue to make big memories and take so many pictures. Irregardless of how successful this transplant is we will not have happy and healthy Piper back for a while. And Linley will not be able to love on, sleep with or boss Piper around like she should be able to...all in due time we pray. And we really, really, really pray for this to be only a dry, painful season that is followed by rejoicing and testimony.
Monday, December 5, 2011
Here we go.
My Facebook status this morning kindly requested that Monday not kick my butt. It didn't but it tried to wear me out, run me ragged and mentally suck me dry. Nothing catastrophic just the general busyness of running a home, raising children and oh yeah, curing cancer.
Well, I'm not. (curing cancer, that is)
I never finished college though I probably could cure cancer if I had a full night of sleep or two.
Part of the busyness of today revolved around the fact that tomorrow begins Pipers bone marrow work up...the few weeks pre transplant where they check out her little self and let us know she is strong and healthy and ready to proceed. Her first appointment is at 11:00am and it is just the same general labwork and physician consult...albeit with the team at Egleston whom I hope and pray are a fraction of as kind, helpful and hopeful as our team at Scottish Rite. After that appointment we will have a psych appointment at the same location. That one should be interesting since I'm not even able to get Piper to clearly express what she wants to eat for lunch much less how she is feeling.
Emotions, Smotions.
Nobody is getting any big feelings around here until all this is said and done and all those who desire hair are given beautiful heads of it.
Wednesday will be another day at Egleston, only it will begin at 7:45am and will be filled with multiple appointments all over their campus and in areas with names like Nuclear Radiology which just typing out makes me want a tranquilizer or alcohol. Or both. Also appointments checking out her kidney and liver and heart function. Tomorrow is also the day they plan to give me the consent form to allow them to pump horrible chemicals into my second born and then to totally wipe out her immune system and then, hopefully, to revive it being leukemia free. I cannot imagine signing this paper but I will because leukemia waits for no one. Thursday is yet again another trip to Atlanta but because we are wild and crazy people we will go to Scottish Rite instead of Egleston and see those doctors there for Pipers regular chemotherapy. I say "we" but mean "Chad" because I am taking the morning off before I begin to speak chemo-ease and not my typical run on English. And Chad has finals this week and next which really, just makes sense for how we tend to roll around here.
There you have it.
We are busy little people. I am attempting to keep my head on straight and am both ready for this whole process to be over with and still hesitant to even begin for hopes of a better, more optimistic option to open up for Piper. I am tired of making big decisions and knowing that none of this was ever on my radar a far as things I wanted when I was a grown up. I know that this is just further proof as to my huge, huge ,huge need to lean on God and his sovereignty and goodness regarding to my plans and hopes and dreams.
Well, I'm not. (curing cancer, that is)
I never finished college though I probably could cure cancer if I had a full night of sleep or two.
Part of the busyness of today revolved around the fact that tomorrow begins Pipers bone marrow work up...the few weeks pre transplant where they check out her little self and let us know she is strong and healthy and ready to proceed. Her first appointment is at 11:00am and it is just the same general labwork and physician consult...albeit with the team at Egleston whom I hope and pray are a fraction of as kind, helpful and hopeful as our team at Scottish Rite. After that appointment we will have a psych appointment at the same location. That one should be interesting since I'm not even able to get Piper to clearly express what she wants to eat for lunch much less how she is feeling.
Emotions, Smotions.
Nobody is getting any big feelings around here until all this is said and done and all those who desire hair are given beautiful heads of it.
Wednesday will be another day at Egleston, only it will begin at 7:45am and will be filled with multiple appointments all over their campus and in areas with names like Nuclear Radiology which just typing out makes me want a tranquilizer or alcohol. Or both. Also appointments checking out her kidney and liver and heart function. Tomorrow is also the day they plan to give me the consent form to allow them to pump horrible chemicals into my second born and then to totally wipe out her immune system and then, hopefully, to revive it being leukemia free. I cannot imagine signing this paper but I will because leukemia waits for no one. Thursday is yet again another trip to Atlanta but because we are wild and crazy people we will go to Scottish Rite instead of Egleston and see those doctors there for Pipers regular chemotherapy. I say "we" but mean "Chad" because I am taking the morning off before I begin to speak chemo-ease and not my typical run on English. And Chad has finals this week and next which really, just makes sense for how we tend to roll around here.
There you have it.
We are busy little people. I am attempting to keep my head on straight and am both ready for this whole process to be over with and still hesitant to even begin for hopes of a better, more optimistic option to open up for Piper. I am tired of making big decisions and knowing that none of this was ever on my radar a far as things I wanted when I was a grown up. I know that this is just further proof as to my huge, huge ,huge need to lean on God and his sovereignty and goodness regarding to my plans and hopes and dreams.
Saturday, December 3, 2011
Really? Again?
Piper is a pooper.
Oh she's a sweet and cute pooper but she's a pooper.
She has had loose stools for weeks now but not like this. Ever since Mondays chemo she has been steadily getting worse. And worse and worse. Today alone I figured I have changed a minimum of 25 dirty diapers. And yes, her little bum looks red and angry but thankfully we have the most amazing stuff for that that we slather on every 30 minutes or every diaper change...whichever comes first.
Good times.
After changing 4 in an hour I called the on-call doctor to vent, er...get some advice. Because Pipers CMV levels are very low and she is still wanting to eat and play we are assuming it to be the results of Monday's chemotherapy. So now we have given Piper the first of a few doses of Imodium in an attempt to dry things up a bit. She has already lost about 2 lbs in the last month or so and we really need to have her as healthy and strong as possible before tranplant not withering away as she is at the moment. And she is supposed to have more chemo next week, poor girl.
Have I memtioned how much leukemia stinks lately? It truly does. I've yet to find the silver lining in this gray cloud and I am worn out just from the effort it takes to keep myself upright some days. Less poop would help me out a bit though if requests are being taken.
Oh she's a sweet and cute pooper but she's a pooper.
She has had loose stools for weeks now but not like this. Ever since Mondays chemo she has been steadily getting worse. And worse and worse. Today alone I figured I have changed a minimum of 25 dirty diapers. And yes, her little bum looks red and angry but thankfully we have the most amazing stuff for that that we slather on every 30 minutes or every diaper change...whichever comes first.
Good times.
After changing 4 in an hour I called the on-call doctor to vent, er...get some advice. Because Pipers CMV levels are very low and she is still wanting to eat and play we are assuming it to be the results of Monday's chemotherapy. So now we have given Piper the first of a few doses of Imodium in an attempt to dry things up a bit. She has already lost about 2 lbs in the last month or so and we really need to have her as healthy and strong as possible before tranplant not withering away as she is at the moment. And she is supposed to have more chemo next week, poor girl.
Have I memtioned how much leukemia stinks lately? It truly does. I've yet to find the silver lining in this gray cloud and I am worn out just from the effort it takes to keep myself upright some days. Less poop would help me out a bit though if requests are being taken.
Wednesday, November 30, 2011
Thanksgiving 2011
Simply being home and together was enough of a reason to give thanks this year.
Last year we celebrated Piper being cancer free but she was beginning to suffer from that blasted diarrhea/vomit fest. The year before that we were still reeling from the fact that our infant even had cancer and we spent the holiday receiving chemo inpatient. And the year before that we had just found out that we were adding another fancy face to this Needham crew. Ups and Downs seem to be our trademark, I believe.
This year we spent it with Chads side of the family and feasted on amazing food and were able to watch the girls run my in laws busy as they like to do. Linley loves the attention and is confident enough to roll with new surroundings but Piper likes a chance to warm up...kind of like her mother. And Chad did not get a "turkey coma" as he likes because I had a glass of wine and that had me dozing on the couch while the girls went for a walk with all those adults who love them so. Don't judge me, please.
After eating more than we ever should have we headed downtown for our annual trek to see the Macy's Christmas tree lighting. Usually we ride Marta and stand at the back and enjoy it that way. This year we were given VIP seating because Scotty McCreery was the featured performer and my six year old has loved him since the first time she saw him on American Idol. She loved seeing him sing so up close and even Piper was a trooper through the whole show and the lighting and all. We weren't able to shake his hand as she so wanted but the whole experience was pretty exciting for her. Major thanks to the every amazing Karen at the clinic for making this possible.
Last year we celebrated Piper being cancer free but she was beginning to suffer from that blasted diarrhea/vomit fest. The year before that we were still reeling from the fact that our infant even had cancer and we spent the holiday receiving chemo inpatient. And the year before that we had just found out that we were adding another fancy face to this Needham crew. Ups and Downs seem to be our trademark, I believe.
This year we spent it with Chads side of the family and feasted on amazing food and were able to watch the girls run my in laws busy as they like to do. Linley loves the attention and is confident enough to roll with new surroundings but Piper likes a chance to warm up...kind of like her mother. And Chad did not get a "turkey coma" as he likes because I had a glass of wine and that had me dozing on the couch while the girls went for a walk with all those adults who love them so. Don't judge me, please.
After eating more than we ever should have we headed downtown for our annual trek to see the Macy's Christmas tree lighting. Usually we ride Marta and stand at the back and enjoy it that way. This year we were given VIP seating because Scotty McCreery was the featured performer and my six year old has loved him since the first time she saw him on American Idol. She loved seeing him sing so up close and even Piper was a trooper through the whole show and the lighting and all. We weren't able to shake his hand as she so wanted but the whole experience was pretty exciting for her. Major thanks to the every amazing Karen at the clinic for making this possible.
Its sort of a "photo dump" sort of night.
Here's the post where I catch up on the last month of our lives.
We were blessed to celebrate Thanksgiving at home, a fact that was huge to us since we know that Christmas will be in the midst of radiation and chemo and prior to a transplant. I am deliberately not planning many thing and am choosing to stay close to home. Its a good season for us four...the girls are an absolute joy to be around and with each other and that warms me in a way that nothing else ever can. That being said, we still stay busy painting pumpkins, figuring out our new Ipads, enjoying bonfires, learning the joys of the potty, getting awards for soccer and singing in chapel. I am Susanna, after all..cant sit too still.
Sadly, I am not superwoman and I find that in order to actually participate and enjoy a lot of the moments our family has I have to put the camera down and not worry about it. I'm going to assume that its the ages of my girls since I know many a mother who is somehow able to detail each significant situation and still actually be in the mix of it all.
I want to be like those ladies someday but today, I give you a few new posts about those two sweet girls that I adore and their often silly, sometimes grumpy, frequently crooked, usually smiling blue eyed wonder filled faces. You can adore them too...try not to.
We were blessed to celebrate Thanksgiving at home, a fact that was huge to us since we know that Christmas will be in the midst of radiation and chemo and prior to a transplant. I am deliberately not planning many thing and am choosing to stay close to home. Its a good season for us four...the girls are an absolute joy to be around and with each other and that warms me in a way that nothing else ever can. That being said, we still stay busy painting pumpkins, figuring out our new Ipads, enjoying bonfires, learning the joys of the potty, getting awards for soccer and singing in chapel. I am Susanna, after all..cant sit too still.
Sadly, I am not superwoman and I find that in order to actually participate and enjoy a lot of the moments our family has I have to put the camera down and not worry about it. I'm going to assume that its the ages of my girls since I know many a mother who is somehow able to detail each significant situation and still actually be in the mix of it all.
I want to be like those ladies someday but today, I give you a few new posts about those two sweet girls that I adore and their often silly, sometimes grumpy, frequently crooked, usually smiling blue eyed wonder filled faces. You can adore them too...try not to.
Monday, November 21, 2011
I'm back.
Last Monday morning we got the call that the preliminary results showed Piper was in remission. For some reason, while I was thrilled, I found myself keeping it in. Numerous people called or texted or emailed and wanted to know the results but still I couldn't quite get myself to talk about it until we got the final report. When I still had not received a call contradicting the preliminary results from Dr. B the next day I was ready to believe it and begin spreading the news. So I did...I told the ladies in my Bible Study and my family. I even found myself telling the cashier at Publix, who was quite happy for me and my little bald blue eyed daughter. Maybe we finally had this beast under control?
It wasn't until Tuesday night that Dr. B called me and told me that Piper still has .16% MRD. (MRD stands for minimal residual disease and it represents the amount of leukemia found within her marrow). At relapse she had 67%, after the first round she had 2% and now she has .16%...not enough to declare her in remission although it is incredibly minuscule. Somehow I found myself again in a slump. I chose to not talk, explain and/or mull on the fact that the beast was still within her sweet little body. There were many tears and fears and they were very, very, very oppressive thoughts until we went to the clinic and finally sat down with Dr. B.
Basically, Dr. B is not overly concerned about the small amount found in her marrow. Piper. At this point they feel if they were to give Piper even more high dose chemo, instead of it conquering more leukemia it would actually cause her cancer to become resistant. This would be the worst thing possible.
And so the plan continues to be a transplant here in Atlanta at Egleston. Pipers treatment will consist of Total Body Radiation, higher doses of chemotherapy than she has ever had before and then finally when her body is as empty of her own cells as possible, the "perfect match" transplant (December 28). Between now and the transplant admission date (December 19) Piper will received lower doses of chemo every 10 days beginning last week. So far, apart from nausea, loss of appetite and some diarrhea, she is faring well.
Did I just write that? Is it warped that all the above still means "well"?
We will be home here in Athens for the next 4 weeks. Every ten days will be chemo in the clinic. And the transplant workup will begin on December 6th and 7th while they examine and test her little body to ensure it is strong enough to proceed. At this time we have no immediate concerns but the amount of chemotherapy she has already received is enormous and has the potential to damage so much.
I so do not care.
I will worry about that one another day.
Its just so nice being home with both girls and that husband of mine.
Now I am glad that I have filled you in on all the ugly but hopeful plans and I can start filling you in on the two year old I have who is beginning to walk alone and the six year old who is beginning to come up with some of the most (flashy, quirky) interesting outfits that are always worth a picture or two.
It wasn't until Tuesday night that Dr. B called me and told me that Piper still has .16% MRD. (MRD stands for minimal residual disease and it represents the amount of leukemia found within her marrow). At relapse she had 67%, after the first round she had 2% and now she has .16%...not enough to declare her in remission although it is incredibly minuscule. Somehow I found myself again in a slump. I chose to not talk, explain and/or mull on the fact that the beast was still within her sweet little body. There were many tears and fears and they were very, very, very oppressive thoughts until we went to the clinic and finally sat down with Dr. B.
Basically, Dr. B is not overly concerned about the small amount found in her marrow. Piper. At this point they feel if they were to give Piper even more high dose chemo, instead of it conquering more leukemia it would actually cause her cancer to become resistant. This would be the worst thing possible.
And so the plan continues to be a transplant here in Atlanta at Egleston. Pipers treatment will consist of Total Body Radiation, higher doses of chemotherapy than she has ever had before and then finally when her body is as empty of her own cells as possible, the "perfect match" transplant (December 28). Between now and the transplant admission date (December 19) Piper will received lower doses of chemo every 10 days beginning last week. So far, apart from nausea, loss of appetite and some diarrhea, she is faring well.
Did I just write that? Is it warped that all the above still means "well"?
We will be home here in Athens for the next 4 weeks. Every ten days will be chemo in the clinic. And the transplant workup will begin on December 6th and 7th while they examine and test her little body to ensure it is strong enough to proceed. At this time we have no immediate concerns but the amount of chemotherapy she has already received is enormous and has the potential to damage so much.
I so do not care.
I will worry about that one another day.
Its just so nice being home with both girls and that husband of mine.
Now I am glad that I have filled you in on all the ugly but hopeful plans and I can start filling you in on the two year old I have who is beginning to walk alone and the six year old who is beginning to come up with some of the most (flashy, quirky) interesting outfits that are always worth a picture or two.
Sunday, November 13, 2011
no news.
I have no news. We have had a blessedly busy weekend and my mind has not often wandered over to the "results of my daughters bone marrow aspirate and potentially the rest of her sweet little life" side of things.
Thank God for that.
I am only posting because I am at a loss. I have spent a large chunk of the past 2 months scouring the Internet for cures, treatment options and a dash of hope for Piper. There is a frightening little amount of information out there. I cannot tell you how terrifying this is. We are continuing to make steps towards the bone marrow transplant here in Atlanta but I cannot help but feel like we are missing something.
I had so hoped it were St. Jude.
It was the best option...I cannot believe that Piper will probably miss out on this only because there is not enough room. Room, beds, space...who would have thought such simple things would be the deciding factors in how and when to cure my child.
And how am I still breathing, laughing, moving about when the very fact is that medical options for Piper are limited. That despite 2 years of the worst ugly you can ever imagine we are still facing such potentially such an even uglier few months. That irregardless of the primitive and fierce love and protection I have given Piper it may not be enough to push me through this season. I am weary. So weary.
Within this evening alone I have sent out 9 emails to specialist and physicians all over the States and Canada, all the while praying for an answer. I don't even know what to expect at this point and am constantly bouncing from the highest of highs to the lowest of lows ever imagined. This easy going mother has begun to morph into a frantic and aggressive mom at times when the sheer lack of options begins to prove itself.
You cannot do this Susanna, you are going to have to trust Gods sovereignty.
Yet again.
Remind me of that please sweet friends. And pray.
Thank God for that.
I am only posting because I am at a loss. I have spent a large chunk of the past 2 months scouring the Internet for cures, treatment options and a dash of hope for Piper. There is a frightening little amount of information out there. I cannot tell you how terrifying this is. We are continuing to make steps towards the bone marrow transplant here in Atlanta but I cannot help but feel like we are missing something.
I had so hoped it were St. Jude.
It was the best option...I cannot believe that Piper will probably miss out on this only because there is not enough room. Room, beds, space...who would have thought such simple things would be the deciding factors in how and when to cure my child.
And how am I still breathing, laughing, moving about when the very fact is that medical options for Piper are limited. That despite 2 years of the worst ugly you can ever imagine we are still facing such potentially such an even uglier few months. That irregardless of the primitive and fierce love and protection I have given Piper it may not be enough to push me through this season. I am weary. So weary.
Within this evening alone I have sent out 9 emails to specialist and physicians all over the States and Canada, all the while praying for an answer. I don't even know what to expect at this point and am constantly bouncing from the highest of highs to the lowest of lows ever imagined. This easy going mother has begun to morph into a frantic and aggressive mom at times when the sheer lack of options begins to prove itself.
You cannot do this Susanna, you are going to have to trust Gods sovereignty.
Yet again.
Remind me of that please sweet friends. And pray.
Wednesday, November 9, 2011
this post sounds a lot more calm than I feel.
Tomorrow morning, much too early than we prefer to be up, Chad will be taking Piper into Atlanta for her lumbar aspirate. This is the procedure in which she will be sedated and marrow will be removed from her lumbar in order for it to be checked to see if she is in remission yet.
When Piper first was diagnosed I remember feeling very much like "of course she will be in remission". When Piper relapsed I remember feeling again like "of course she will be in remission"...at this point I sincerely have no clue. No inkling or idea.
Each visit to the clinic Piper has a CBC done and we pray her counts continue to show no leukemia in her blood work, though we still know it is hiding somewhere. If she is low on platelets or hemoglobin she will have that transfusion. During the sedation they will also check her central nervous system since there has been cells there in the past. She will not be receiving any chemo in order for them to get as clear of results as possible. Piper's CMV levels are also monitored because with no immune system she is at a high risk of a recurrence and well, that was a ridiculous thing for her to fight off the first time much less attempting to go into a transplant.
We usually get results in 2 or three days so we could have results Friday afternoon but I don't expect them until early next week. And as usual, we don't know specific plans for the near future until we know what her body is doing. And yes, this is slightly nerve racking. Slightly.
What we do know:
1) chemotherapy is no longer the cure for Piper. Her leukemia has outsmarted it.
2) St Jude is still filled to capacity. They cannot guarantee us space within 2 months.
3) Irregardless of tomorrows results, we need to get the girl to a transplant. Soon.
4) She has a "perfect match" who is ready to donate at any time.
5) This match means treatment will be done here in Atlanta.
Short answer...yes, I am very nervous. The treatment at St. Jude is better, more effective. It is definitely our first choice despite how crazy it would make our lives for a few months. A traditional transplant at Egleston was our back up plan. We are still hoping and praying for a room to open up but the fact is that Piper needs to have a transplant soon...if we were to wait two months they are certain that she will only have more leukemia at transplant rather than less making the chance of success limited.
While I was complaining about this to a group of friends the other day I was reminded that whatever happens is actually Gods first plan. It is what He wants to happen, irregardless of what I want or what we feel is the best move. So with that in mind we are just praying now for clear direction. Whatever the best option is we want to know for sure and not be left making decisions too big for us to handle.
As for now we are enjoying the time at home. I love the simplicity of preparing Linleys lunch the night before, of making chili with Piper during the day and playing outside with the girls after school. Just going to the grocery store and not stocking up on ready made meals and purchasing food to make a homemade dinner is a great feeling. Not surprisingly, cleaning the bathroom is not nearly as fullfilling which explains the fact that I just dont plan to clean it. Im feeling lazy like that.
The death of sweet Tyler last week was a huge wake up as to what we are fighting against. It has frightened me and worried me and caused me much stress...that being said, I am attempting to remember that this is not in my hands (or fears) at all and that the results of the next few months are not up to me.
Piper is in Gods hands as are myself, Chad and Linley.
This is a very good place to be.
When Piper first was diagnosed I remember feeling very much like "of course she will be in remission". When Piper relapsed I remember feeling again like "of course she will be in remission"...at this point I sincerely have no clue. No inkling or idea.
Each visit to the clinic Piper has a CBC done and we pray her counts continue to show no leukemia in her blood work, though we still know it is hiding somewhere. If she is low on platelets or hemoglobin she will have that transfusion. During the sedation they will also check her central nervous system since there has been cells there in the past. She will not be receiving any chemo in order for them to get as clear of results as possible. Piper's CMV levels are also monitored because with no immune system she is at a high risk of a recurrence and well, that was a ridiculous thing for her to fight off the first time much less attempting to go into a transplant.
We usually get results in 2 or three days so we could have results Friday afternoon but I don't expect them until early next week. And as usual, we don't know specific plans for the near future until we know what her body is doing. And yes, this is slightly nerve racking. Slightly.
What we do know:
1) chemotherapy is no longer the cure for Piper. Her leukemia has outsmarted it.
2) St Jude is still filled to capacity. They cannot guarantee us space within 2 months.
3) Irregardless of tomorrows results, we need to get the girl to a transplant. Soon.
4) She has a "perfect match" who is ready to donate at any time.
5) This match means treatment will be done here in Atlanta.
Short answer...yes, I am very nervous. The treatment at St. Jude is better, more effective. It is definitely our first choice despite how crazy it would make our lives for a few months. A traditional transplant at Egleston was our back up plan. We are still hoping and praying for a room to open up but the fact is that Piper needs to have a transplant soon...if we were to wait two months they are certain that she will only have more leukemia at transplant rather than less making the chance of success limited.
While I was complaining about this to a group of friends the other day I was reminded that whatever happens is actually Gods first plan. It is what He wants to happen, irregardless of what I want or what we feel is the best move. So with that in mind we are just praying now for clear direction. Whatever the best option is we want to know for sure and not be left making decisions too big for us to handle.
As for now we are enjoying the time at home. I love the simplicity of preparing Linleys lunch the night before, of making chili with Piper during the day and playing outside with the girls after school. Just going to the grocery store and not stocking up on ready made meals and purchasing food to make a homemade dinner is a great feeling. Not surprisingly, cleaning the bathroom is not nearly as fullfilling which explains the fact that I just dont plan to clean it. Im feeling lazy like that.
The death of sweet Tyler last week was a huge wake up as to what we are fighting against. It has frightened me and worried me and caused me much stress...that being said, I am attempting to remember that this is not in my hands (or fears) at all and that the results of the next few months are not up to me.
Piper is in Gods hands as are myself, Chad and Linley.
This is a very good place to be.
Thursday, November 3, 2011
Fun Friday
One thing I have loved about this new school that Linley is at is the fact that they work very hard. Academically this school keeps Linley on her toes (as well as Chad and I). But instead of it being all work, work, learn, learn they make a point to play hard also. Each month they celebrate their good work with a field trip, different each time but still something special and out of the box and exciting.
I love this.
And I especially enjoyed having the time with Linley and meeting her friends.
So many funny little kiddos.
My sweet Linley had a great time spending the day experiencing much fall fun.
She slid:
She jumped:
She snacked:
She rode:
She dug:
She zipped:
She swung:
She buried:
Have I ever mentioned just how much I love this girl?
Wednesday, November 2, 2011
death
Sometimes death feels like an eternity away. So often we chose to not mentally go there for fear or for lack of understanding...often for me I don't go there because I know too well that it may very well come looking for my family all too soon.
In the last week I have lost two people. Two guys who were special to me for different ways and yet both of whom will stand for something so very good in my memory.
Last Thursday afternoon, my Uncle Dean passed away during an afternoon nap. Uncle Dean loved the Lord more than the wife, children, grandchildren and friends he left behind and that seems to be the saving grace for their loss. He called me "no-shoes-anna" when I was a little girl because my feet were to tiny for shoes. He was my fathers best man in my parents wedding. It was he and his wife who gave me my own best friend and maid of honor for my own wedding years later and I am forever indebted to him for that.
He was the epitome of a faithful man of God.
His family will continue to mirror Uncle Deans faithfulness, I am certain.
Today at 4:33pm a fellow infant leukemia fighter passed away. Tyler Burdick and his mom and family were so very strong, so very optimistic and so very selfless throughout the course of their 2+ years of fighting this terror. I was lucky to "meet" Stephanie on the online infant leukemia support group and we shared similar stories and experiences...she was always the first to encourage another and the last to complain.
She was the epitome of a strong cancer mother.
This loss will not change that about her, I am certain.
These two deaths have hit me hard. The fact that I, despite my faith, find myself questioning God and his goodness is merely the ripple effect of pain and loss. I cannot imagine losing my father as he is the man I most look up to and I cannot imagine losing my daughters whom I carried and bore and hold. But someday my children and my father will pass on. I cannot control this, as Pipers illness has taught me, and if the tears that hurt me today are any indication then I will not handle this as well as I haughtily thought back in the days when death was far away and life seemed so simple.
I have been listening to this song on repeat all week. Its so good.
And despite my sadness it is true.
In the last week I have lost two people. Two guys who were special to me for different ways and yet both of whom will stand for something so very good in my memory.
Last Thursday afternoon, my Uncle Dean passed away during an afternoon nap. Uncle Dean loved the Lord more than the wife, children, grandchildren and friends he left behind and that seems to be the saving grace for their loss. He called me "no-shoes-anna" when I was a little girl because my feet were to tiny for shoes. He was my fathers best man in my parents wedding. It was he and his wife who gave me my own best friend and maid of honor for my own wedding years later and I am forever indebted to him for that.
He was the epitome of a faithful man of God.
His family will continue to mirror Uncle Deans faithfulness, I am certain.
Today at 4:33pm a fellow infant leukemia fighter passed away. Tyler Burdick and his mom and family were so very strong, so very optimistic and so very selfless throughout the course of their 2+ years of fighting this terror. I was lucky to "meet" Stephanie on the online infant leukemia support group and we shared similar stories and experiences...she was always the first to encourage another and the last to complain.
She was the epitome of a strong cancer mother.
This loss will not change that about her, I am certain.
These two deaths have hit me hard. The fact that I, despite my faith, find myself questioning God and his goodness is merely the ripple effect of pain and loss. I cannot imagine losing my father as he is the man I most look up to and I cannot imagine losing my daughters whom I carried and bore and hold. But someday my children and my father will pass on. I cannot control this, as Pipers illness has taught me, and if the tears that hurt me today are any indication then I will not handle this as well as I haughtily thought back in the days when death was far away and life seemed so simple.
I have been listening to this song on repeat all week. Its so good.
And despite my sadness it is true.
Monday, October 31, 2011
Day 25 of 28
Only three more days until this round of chemo is completed. Once Wednesday passes and Pipers counts begin to improve, we will be hitting the ground running.out.of.here.
I found out today that St. Jude is pretty packed. There is the hope to be in there the end of November but this is only further proof that we really have no idea what the next step will be. We know what we want to happen...but no movement yet. I have no idea what plan B is. Please pray for the doors to be opened and that Piper will find her place in their studies
Piper is doing well. She continues to have fevers at night but all of her cultures are still clear and good. She has a rash that moves about her body, sometimes coming and sometimes going...its so very odd. Hopefully it is only the sorafenib but it will probably be biopsied when her counts recover to rule out something bacterial if it is still present. No mouth sores or diaper rashes apparent, thankfully.
She still has an ANC of less than 10 but she had some pretty achy legs this morning and they are thinking it could be her counts coming back up. When that happens its not uncommon for kids joints to ache and be sore. Lortab this morning got her back in shape and running the halls. Still nibbling a bit but no real appetite to speak of.
Piper has officially lost her hair. Within the week that she had the last of her hair shaved off, we are beginning to see a little bit of regrowth. Its so soft and downy. I remember well how victorious I felt when Piper had her head of blond hair and no leukemia showing in her blood work. I ache to see her the way she was before she relapsed. While I know well that this is only hair, in our situation it is a big milestone and one that I pray we can quickly achieve again and permanently.
We are all growing tired of fighting this, of being apart from each other, from planning for days not weeks, of pull out couches and cafeteria food, of wondering what will happen to this family that we have worked so very hard to put together.
Its not uncommon in this lifestyle to be told "God wont give you more than you can handle"...I think this is ridiculous. Of course He will. And has. Otherwise I would not need Him and these days I need Him more than I ever have, although I cannot help but wish I were able to softly lean on Him not find myself clutching at Him and sobbing.
I found out today that St. Jude is pretty packed. There is the hope to be in there the end of November but this is only further proof that we really have no idea what the next step will be. We know what we want to happen...but no movement yet. I have no idea what plan B is. Please pray for the doors to be opened and that Piper will find her place in their studies
Piper is doing well. She continues to have fevers at night but all of her cultures are still clear and good. She has a rash that moves about her body, sometimes coming and sometimes going...its so very odd. Hopefully it is only the sorafenib but it will probably be biopsied when her counts recover to rule out something bacterial if it is still present. No mouth sores or diaper rashes apparent, thankfully.
She still has an ANC of less than 10 but she had some pretty achy legs this morning and they are thinking it could be her counts coming back up. When that happens its not uncommon for kids joints to ache and be sore. Lortab this morning got her back in shape and running the halls. Still nibbling a bit but no real appetite to speak of.
Piper has officially lost her hair. Within the week that she had the last of her hair shaved off, we are beginning to see a little bit of regrowth. Its so soft and downy. I remember well how victorious I felt when Piper had her head of blond hair and no leukemia showing in her blood work. I ache to see her the way she was before she relapsed. While I know well that this is only hair, in our situation it is a big milestone and one that I pray we can quickly achieve again and permanently.
We are all growing tired of fighting this, of being apart from each other, from planning for days not weeks, of pull out couches and cafeteria food, of wondering what will happen to this family that we have worked so very hard to put together.
Its not uncommon in this lifestyle to be told "God wont give you more than you can handle"...I think this is ridiculous. Of course He will. And has. Otherwise I would not need Him and these days I need Him more than I ever have, although I cannot help but wish I were able to softly lean on Him not find myself clutching at Him and sobbing.
Wednesday, October 26, 2011
Day 22
Monday evening Piper began to run a fever. This is not uncommon when she is neutropenic and is actually the reason she is kept in the hospital until count recovery. Literally in the course of an hour she went from normal to 39.4 (103 degrees) and shaking and chills.
The problem is that Monday was the day Pipers port was supposed to be reaccessed, they do this weekly to keep infection at bay. So the nurse had agreed to deaccess Piper that morning so she could have the day free and hopefully get a bath before re accessing her later that night for fluids. Unfortunately we didn't know that Pipers platelet count was lower than they normally transfuse at and the last time Piper was reaccessed with low platelets she bled out for over 3 hours while they rushed platelets. It was horrifically scary.
The bigger problem was that with a fever she can easily become septic with no counts to fight off infections or viruses. And they cannot give Tylenol or antibiotics to combat a fever until after they have a true blood culture to run. And they cannot receive blood without re accessing her port which would almost definitely bleed out.
Oh, and there were no platelets available in the state of Georgia for her A- type.
And they had no idea when platelets would be available.
I tried not to freak out.
(not very well, but I get points for trying)
And then just as (favorite) Nurse Jaime began to clean Piper up to be accessed to get cultures, (favorite) Nurse Alyssa popped her head in the door and said some had just been flown in from Charlotte NC.
Just for Piper.
So she was accessed...she bled a bit...they rushed the platelets...and all was well.
(And mommy kicked herself for not keeping small bottles of wine in the room)
Since then her cultures came back for, wait for it, "gram positive cocci in chains". Yep, that's what they told me. Apparently that probably means something in the strep or staph family which sounds scary but her cultures from the very next day were already clear so whatever is causing the fever is at least responding to the antibiotics.
Piper is still having fevers but she bounces back quickly after given Tylenol and she is nearly her normal busy, bossy, sweet self. She will continue to be on the IV antibiotics for about a week which is no biggie since we are snuggled in nice and cozy at the hospital anyways.
Well, Chad is at least. I'm barefoot on the couch at home with Linley.
I'm pretty sure he's cozy though since he loves the ugly socks they pass out there.
Odd man.
So keep praying that she is able to continue to fight this off, that nothing else rears its ugly head, that her counts recover quickly, and Oh yeah, that she beats Leukemia.
For the second time.
Jeez, she is such a complicated little sweetie and I don't mind a bit.
The problem is that Monday was the day Pipers port was supposed to be reaccessed, they do this weekly to keep infection at bay. So the nurse had agreed to deaccess Piper that morning so she could have the day free and hopefully get a bath before re accessing her later that night for fluids. Unfortunately we didn't know that Pipers platelet count was lower than they normally transfuse at and the last time Piper was reaccessed with low platelets she bled out for over 3 hours while they rushed platelets. It was horrifically scary.
The bigger problem was that with a fever she can easily become septic with no counts to fight off infections or viruses. And they cannot give Tylenol or antibiotics to combat a fever until after they have a true blood culture to run. And they cannot receive blood without re accessing her port which would almost definitely bleed out.
Oh, and there were no platelets available in the state of Georgia for her A- type.
And they had no idea when platelets would be available.
I tried not to freak out.
(not very well, but I get points for trying)
And then just as (favorite) Nurse Jaime began to clean Piper up to be accessed to get cultures, (favorite) Nurse Alyssa popped her head in the door and said some had just been flown in from Charlotte NC.
Just for Piper.
So she was accessed...she bled a bit...they rushed the platelets...and all was well.
(And mommy kicked herself for not keeping small bottles of wine in the room)
Since then her cultures came back for, wait for it, "gram positive cocci in chains". Yep, that's what they told me. Apparently that probably means something in the strep or staph family which sounds scary but her cultures from the very next day were already clear so whatever is causing the fever is at least responding to the antibiotics.
Piper is still having fevers but she bounces back quickly after given Tylenol and she is nearly her normal busy, bossy, sweet self. She will continue to be on the IV antibiotics for about a week which is no biggie since we are snuggled in nice and cozy at the hospital anyways.
Well, Chad is at least. I'm barefoot on the couch at home with Linley.
I'm pretty sure he's cozy though since he loves the ugly socks they pass out there.
Odd man.
So keep praying that she is able to continue to fight this off, that nothing else rears its ugly head, that her counts recover quickly, and Oh yeah, that she beats Leukemia.
For the second time.
Jeez, she is such a complicated little sweetie and I don't mind a bit.
Monday, October 24, 2011
Normal/Not so Normal
I am thinking I may have a case of self induced "bipolaritis".
Is that even possible?
Because it sure feels like it sometimes.
Take yesterday, I was hanging with Linley at her soccer game drinking my warm chai on a chilly morning and I was treating her and her friend to pedicures afterwards before dropping Linley off at my sisters house to bake cupcakes.
I showered and wore make up. I threw clothes in the washing machine. I drove my car. I had conversations about the weather and Halloween plans. I kissed on my nephew.
Totally normal day.
And then there was today. Today was me with Piper and the endless laps around the Aflac Unit while attempting to chug my coca-cola and fend off her requests for Big Bird and allowing her to paste stickers on the doors so she wouldnt ask to eat.
I showered at lunchtime and totally forgot makeup. I pinned Piper into her stroller to walk to the laundry room. I followed her and her walker around and around. I had conversations about blood transfusions and fainting spells. I kissed half my family goodbye.
Not so normal day.
Not a bad day but I really am craving the ability to take off my shoes, grab a bowl of ice cream and catch up on what that crazy man and his 4 wives are doing on TLC.
What I am really craving is the life that I used to think would be so boring. Little did I know that all the last 2 years have done is make me ache for the simplicity of soccer games and dinner dishes. Of bare feet and laundry running. Of to-do lists and diy projects. Of both daughters cuddled together, playing together, living together.
I chose to enjoy the moments for what they are when I am here with Piper but I also fight against allowing myself to become angry at having so much snatched away from us.
I think that this "bipolaritis" may go nicely with my insomnia in an apparent attempt to make this mommy a hot mess.
Not going to happen, yall.
Normal or not so normal...we're doing it.
Is that even possible?
Because it sure feels like it sometimes.
Take yesterday, I was hanging with Linley at her soccer game drinking my warm chai on a chilly morning and I was treating her and her friend to pedicures afterwards before dropping Linley off at my sisters house to bake cupcakes.
I showered and wore make up. I threw clothes in the washing machine. I drove my car. I had conversations about the weather and Halloween plans. I kissed on my nephew.
Totally normal day.
And then there was today. Today was me with Piper and the endless laps around the Aflac Unit while attempting to chug my coca-cola and fend off her requests for Big Bird and allowing her to paste stickers on the doors so she wouldnt ask to eat.
I showered at lunchtime and totally forgot makeup. I pinned Piper into her stroller to walk to the laundry room. I followed her and her walker around and around. I had conversations about blood transfusions and fainting spells. I kissed half my family goodbye.
Not so normal day.
Not a bad day but I really am craving the ability to take off my shoes, grab a bowl of ice cream and catch up on what that crazy man and his 4 wives are doing on TLC.
What I am really craving is the life that I used to think would be so boring. Little did I know that all the last 2 years have done is make me ache for the simplicity of soccer games and dinner dishes. Of bare feet and laundry running. Of to-do lists and diy projects. Of both daughters cuddled together, playing together, living together.
I chose to enjoy the moments for what they are when I am here with Piper but I also fight against allowing myself to become angry at having so much snatched away from us.
I think that this "bipolaritis" may go nicely with my insomnia in an apparent attempt to make this mommy a hot mess.
Not going to happen, yall.
Normal or not so normal...we're doing it.
Tuesday, October 18, 2011
A plan is a hatchin'.
Not my plan of course. Somehow MY plan got derailed about the time I became a grownup and realized my parents were (surprise! surprise!) smart and telling me the truth when they said being a grown up was some hard work. My plan involved holding hands with my love while watching many little blond children run the backyard. It involved days filled with playing, baking, gardening, rearranging and teaching...not cancer and the steamroll of a path that it has made through such a simple plan.
Nope, my plan is on hold as I am learning ever more that holding onto the Big Guy is infinitely more important than I had ever thought possible. Not that I don't continue to have plans...somehow though it seems like someone else is making those plans for me an awful lot. And not that I have as many options anymore and not that I have the capability to make choices clearly very often these days.
(that goes for everything. Should I have more children? Should I shower? Should I argue with Linley about math facts? Should I eat pizza or subs for dinner? Should I buy a big thing of laundry soap or a small one? Should I shave Pipers head? Should I do this, that or the other thing?)
Should I move with Piper to Memphis, Tn to be treated at St. Jude?
What?
Yes, that's the plan that we are a hatchin'.
There are doctors at St. Jude who have more options for Piper than the few we have been offered here. Here we are told that unless Piper can get to remission using the traditional chemo they are able to offer she will not be eligible for transplant. And even if there is a transplant that takes place there is little chance that the leukemia will not rear its ugly head and cause Piper to relapse yet again. St. Jude has experimental but positive evidence that there is an other option for children with high risk leukemia like my Piper. There is an article about it here
So the plan is that Piper and I will be going to St. Jude for a consult once her counts begin to recover from this round. When will that be? Who knows...hopefully within the month. And the rest of the plan is entirely contingent on what we are told during our consult and what Pipers leukemia is doing. I am certain that if Piper is taken on as a patient we will be there in Memphis for a few months as she goes through all the treatments prior to the transplant as well as the recovery from the transplant.
Chad will not be able to go. Linley will not be able to go. I am going to learn a whole different mode of mothering through technology at best. This is crushing me...I cannot tell you how much. We have chosen not to even tell Linley of this option until we know for sure what we will be doing and in which way this will effect her, as I am certain it shall throw her for a loop. Heck, I'm trying to not worry about not being with my sweet Linley for multiple months until I know for certain that this has to be the plan.
So there you have it. A plan. Its tentative at best but its got potential.
Potential is good. Leukemia is horrid. And this mommy is heavy hearted at the moment.
Nope, my plan is on hold as I am learning ever more that holding onto the Big Guy is infinitely more important than I had ever thought possible. Not that I don't continue to have plans...somehow though it seems like someone else is making those plans for me an awful lot. And not that I have as many options anymore and not that I have the capability to make choices clearly very often these days.
(that goes for everything. Should I have more children? Should I shower? Should I argue with Linley about math facts? Should I eat pizza or subs for dinner? Should I buy a big thing of laundry soap or a small one? Should I shave Pipers head? Should I do this, that or the other thing?)
Should I move with Piper to Memphis, Tn to be treated at St. Jude?
What?
Yes, that's the plan that we are a hatchin'.
There are doctors at St. Jude who have more options for Piper than the few we have been offered here. Here we are told that unless Piper can get to remission using the traditional chemo they are able to offer she will not be eligible for transplant. And even if there is a transplant that takes place there is little chance that the leukemia will not rear its ugly head and cause Piper to relapse yet again. St. Jude has experimental but positive evidence that there is an other option for children with high risk leukemia like my Piper. There is an article about it here
So the plan is that Piper and I will be going to St. Jude for a consult once her counts begin to recover from this round. When will that be? Who knows...hopefully within the month. And the rest of the plan is entirely contingent on what we are told during our consult and what Pipers leukemia is doing. I am certain that if Piper is taken on as a patient we will be there in Memphis for a few months as she goes through all the treatments prior to the transplant as well as the recovery from the transplant.
Chad will not be able to go. Linley will not be able to go. I am going to learn a whole different mode of mothering through technology at best. This is crushing me...I cannot tell you how much. We have chosen not to even tell Linley of this option until we know for sure what we will be doing and in which way this will effect her, as I am certain it shall throw her for a loop. Heck, I'm trying to not worry about not being with my sweet Linley for multiple months until I know for certain that this has to be the plan.
So there you have it. A plan. Its tentative at best but its got potential.
Potential is good. Leukemia is horrid. And this mommy is heavy hearted at the moment.
Sunday, October 16, 2011
day 11 of 28
Here we are. Back at Scottish Rite.
On Friday, Piper had a 8am sedation for chemo targeting her central nervous system. This went well and we planned to be admitted but there were no beds in Aflac so we were able to leave and go grab lunch before settling into room 187 for the rest of this 28 day round.
Piper has some rash on her body as a result of her Sorafenib (oral chemo) but because it is not causing her any pain or itching they are just watching her. She has this chemo twice a day at 8am and 7pm and the only complication she has had is the fact that she cannot eat or drink for 2 hours before and an hour after...ugh. There is a new chemo that Piper is receiving this round called Clafarabine. It is supposed to be pretty brutal stuff so they have timed her to have it in the morning from 10am-noon when there are doctors galore roaming about. So far, two doses in, she is handling it well. She gets a two hour break then she begins a two hour chemo called Cytarabine. The rest of the day she is able to hang out, stuck to the iv pole and her fluids, but still free to move and walk and charm everyone.
Today marks day 11 of twenty eight days. The above schedule is for days 10-15 and after that she will be only receiving her oral chemo twice daily for days 12-28. The plan is that she will be here until her counts recover...hopefully and prayerfully it will not be the same 6 week stay but it all depends on Pipers marrow and how well it bounces back.
We have a new option lately regarding Piper and what will be next for her treatment plan. I am tentatively optimistic and would appreciate prayer that the right choices are made for us. It will require more but has the potential to be more successful.
Things are blessedly slow around here but I am certain that many things will pop up. Prayers are appreciated, as are the notes, gift cards, meals and childcare that everyone is blessing us with. Please don't stop...its what keeps us rolling on.
On Friday, Piper had a 8am sedation for chemo targeting her central nervous system. This went well and we planned to be admitted but there were no beds in Aflac so we were able to leave and go grab lunch before settling into room 187 for the rest of this 28 day round.
Piper has some rash on her body as a result of her Sorafenib (oral chemo) but because it is not causing her any pain or itching they are just watching her. She has this chemo twice a day at 8am and 7pm and the only complication she has had is the fact that she cannot eat or drink for 2 hours before and an hour after...ugh. There is a new chemo that Piper is receiving this round called Clafarabine. It is supposed to be pretty brutal stuff so they have timed her to have it in the morning from 10am-noon when there are doctors galore roaming about. So far, two doses in, she is handling it well. She gets a two hour break then she begins a two hour chemo called Cytarabine. The rest of the day she is able to hang out, stuck to the iv pole and her fluids, but still free to move and walk and charm everyone.
Today marks day 11 of twenty eight days. The above schedule is for days 10-15 and after that she will be only receiving her oral chemo twice daily for days 12-28. The plan is that she will be here until her counts recover...hopefully and prayerfully it will not be the same 6 week stay but it all depends on Pipers marrow and how well it bounces back.
We have a new option lately regarding Piper and what will be next for her treatment plan. I am tentatively optimistic and would appreciate prayer that the right choices are made for us. It will require more but has the potential to be more successful.
Things are blessedly slow around here but I am certain that many things will pop up. Prayers are appreciated, as are the notes, gift cards, meals and childcare that everyone is blessing us with. Please don't stop...its what keeps us rolling on.
Thursday, October 13, 2011
James 5: 14-16
"Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective."
(James 5: 14-16)
Tonight the pastors and elders of our church came over. Piper was anointed with oil and then the group of men laid hands on her little self and prayed.
Big prayers for miracles.
Big prayers for our marriage and family.
Big prayers for peace and faithfulness.
It was such an immeasurable blessing to us.
Chad and I are still not accustomed to the overflow of love that this church has bestowed upon us. Not in any way to pat them on the back but rather to thank the throes of men and women who see loving as a reality and not just a sermon.
Within this group of eight men standing in my living room, two of them are childhood cancer survivors and one of them is currently walking through his sons lymphoma diagnosis. The men that have been through this, get it. The rest of them are still faithfully bringing our family's name to their mouths each day in hopes that a cure will happen.
I don't know how prayer works. I do know that God is not a genie and that He will not necessarily cure my Piper if I only believe it enough. But He is capable and He will cure my Piper if that is His plan...my only job is to trust that the amount of love that He has for her vastly outweighs my own. Gods goodness is not reliant on how much I like or trust His plan.
And I do trust that because when life becomes so very hard and its uncontrollable and uncomfortable and unexplainable what else do I have? If I loose the trust in God that I have then I am left with no fathomable hope, but still all the uncontrollable,uncomfortable and the unexplainable that so can rattle someone.
No thanks. I cling to hope. And I thank God for good men who step up and put to action what is preached on Sunday morning...it soothed our souls tonight.
(James 5: 14-16)
Tonight the pastors and elders of our church came over. Piper was anointed with oil and then the group of men laid hands on her little self and prayed.
Big prayers for miracles.
Big prayers for our marriage and family.
Big prayers for peace and faithfulness.
It was such an immeasurable blessing to us.
Chad and I are still not accustomed to the overflow of love that this church has bestowed upon us. Not in any way to pat them on the back but rather to thank the throes of men and women who see loving as a reality and not just a sermon.
Within this group of eight men standing in my living room, two of them are childhood cancer survivors and one of them is currently walking through his sons lymphoma diagnosis. The men that have been through this, get it. The rest of them are still faithfully bringing our family's name to their mouths each day in hopes that a cure will happen.
I don't know how prayer works. I do know that God is not a genie and that He will not necessarily cure my Piper if I only believe it enough. But He is capable and He will cure my Piper if that is His plan...my only job is to trust that the amount of love that He has for her vastly outweighs my own. Gods goodness is not reliant on how much I like or trust His plan.
And I do trust that because when life becomes so very hard and its uncontrollable and uncomfortable and unexplainable what else do I have? If I loose the trust in God that I have then I am left with no fathomable hope, but still all the uncontrollable,uncomfortable and the unexplainable that so can rattle someone.
No thanks. I cling to hope. And I thank God for good men who step up and put to action what is preached on Sunday morning...it soothed our souls tonight.
Monday, October 10, 2011
Linley the Soccer Star
My Linley tends to be the watcher in a group. When she was young, our favorite thing to do was to go people watching at the mall or park. She would have a little snack and be perfectly content to see faces and hear voices. She would watch with those big blue eyes that she still gets comments on and people would notice her and watch her back. When she was able to talk she would recall details of things that I never would have noticed and she would ask questions of things I would rack my brain to remember.
(Those sweet and pensive moments have not gone entirely away, thankfully.)
That girl, shes a watcher.
And recently shes becoming a mover as well.
Not unlike her mother, she is short. Also not unlike her mother, she is feisty. Totally unlike her mother though, she is showing skills in soccer. And somewhere along the way shes picking up a big dose of confidence and is doing an amazing job at keeping up with the game. Each Saturday she joins her team and follows directions well enough to keep winning...Three games in a row!
Now not only do we know that Linley is a watcher, shes also a mover and a shaker.
A very talented, confident and fiesty mover and shaker.
Lord love that sweet Linley Coe.
Wednesday, October 5, 2011
When something works out for once
Remember that time that I felt ridiculously downtrodden and wanted something, anything really, to work out for us? And I am easily impressed so this could be as simple as free parking at the hospital or as fabulous as a call saying "whoops our mistake, there was no leukemia in your daughter. Don't call us, we will call you".
That would be on par with Jesus's return, another event that I am certain will make me a little happy and not find myself wishing wine tasted like coca-cola so I could drink my sorrows away as I often want to do.
Rabbit trails? I know. Read on and see how something worked out for us, for once.
It was a long day in Atlanta and while Chad and I are very well acquainted with Scottish Rite, the Egleston campus was a whole different (much larger, more expensive) world. It took us a minute to find parking much less the way to the clinic. And while at the clinic it was confusing because they do things differently and we were totally getting the same look we give to people we see at Scottish Rite who look confused. Happily Piper did wonderful throughout the exam, throughout our meeting with Dr. Haight and in spite of the fact that walking around was not entirely possible due to space and health stipulations for the transplant patients.
The meeting went okay at best. Chad and I both left feeling a little less optimistic. In normal person language, Dr. Haight felt like Piper will need to be in remission or at the very least, under 1% MRD (minimal residual disease). With even the two percent she currently has she will probably not survive a transplant as well as the risk of relapse being almost definite. They are still weeding through the Bone Marrow Donor list, which is a total of 11 choices as well as the Cord Blood Donors who number 8. Dr. Haight would rather use a BM donor especially since another round of chemo is necessary and we should have a little more time to whittle the donors down into the best match. While she was very knowledgeable and kind, she was very matter of fact that Piper will need to meet the remission requirement in order for her to proceed.
Obviously that was not the thing that worked out for us. While we were at Egleston she had a CBC done to see if the leukemia was yet showing up in her blood work. If it had they would have been beginning chemo inpatient asap and things would be getting a little crazy once again.
Praise God.
Its not.
We are home. As in the apartment we pay rent at, not the hospital that we abhor/love because of what the people we know are doing to Piper there. As far as her blood work goes her little body has no idea that cancer is in its midst. So after a quick call to Scottish Rite we were sent on home. Music to my ears. Makes me want to dance. Big, big, big smiles for me...and tears, of course.
(Because its Tuesday and that's the scheduled day to sob regardless of location)
Tomorrow we will begin oral chemo at home twice a day for the first seven days of this new 28 day round. On Friday the 14th we will admit back to the hospital for Clafarabine and ARA-C on days 8-12 and she will remain there as long as they deem necessary (but hopefully not another six week stay) while continuing to receive the oral chemo but nothing else. After her counts recover at the end of her round she will have another bone marrow aspirate and hopefully at that time she will finally be in remission. I am not certain what would happen if she still has MRD but I am sure it will not be a good sign.
I was so blasted excited about being home for an entire ten more days that I bought the girls a new bedroom suite that (of course) needs to be stripped and repainted. You know, since I have all this free time. Today was so totally busy but in that happy way. I managed to plant mums, clean my floors, visit both Walmart and Trader Joes after doing the morning carpool, sand the new dressers, visit with my in laws and make a whole chicken in the crock pot for dinner. Mostly, I loved on my girls.
I have always loved the simple business of being a mom and I live for days like these where I am only nurturing, loving and being with my favorite people in the world. The hospital seems so very far away and for the next 9 days I shall pretend it doesn't even exist.
This really works out for me.
That would be on par with Jesus's return, another event that I am certain will make me a little happy and not find myself wishing wine tasted like coca-cola so I could drink my sorrows away as I often want to do.
Rabbit trails? I know. Read on and see how something worked out for us, for once.
It was a long day in Atlanta and while Chad and I are very well acquainted with Scottish Rite, the Egleston campus was a whole different (much larger, more expensive) world. It took us a minute to find parking much less the way to the clinic. And while at the clinic it was confusing because they do things differently and we were totally getting the same look we give to people we see at Scottish Rite who look confused. Happily Piper did wonderful throughout the exam, throughout our meeting with Dr. Haight and in spite of the fact that walking around was not entirely possible due to space and health stipulations for the transplant patients.
The meeting went okay at best. Chad and I both left feeling a little less optimistic. In normal person language, Dr. Haight felt like Piper will need to be in remission or at the very least, under 1% MRD (minimal residual disease). With even the two percent she currently has she will probably not survive a transplant as well as the risk of relapse being almost definite. They are still weeding through the Bone Marrow Donor list, which is a total of 11 choices as well as the Cord Blood Donors who number 8. Dr. Haight would rather use a BM donor especially since another round of chemo is necessary and we should have a little more time to whittle the donors down into the best match. While she was very knowledgeable and kind, she was very matter of fact that Piper will need to meet the remission requirement in order for her to proceed.
Obviously that was not the thing that worked out for us. While we were at Egleston she had a CBC done to see if the leukemia was yet showing up in her blood work. If it had they would have been beginning chemo inpatient asap and things would be getting a little crazy once again.
Praise God.
Its not.
We are home. As in the apartment we pay rent at, not the hospital that we abhor/love because of what the people we know are doing to Piper there. As far as her blood work goes her little body has no idea that cancer is in its midst. So after a quick call to Scottish Rite we were sent on home. Music to my ears. Makes me want to dance. Big, big, big smiles for me...and tears, of course.
(Because its Tuesday and that's the scheduled day to sob regardless of location)
Tomorrow we will begin oral chemo at home twice a day for the first seven days of this new 28 day round. On Friday the 14th we will admit back to the hospital for Clafarabine and ARA-C on days 8-12 and she will remain there as long as they deem necessary (but hopefully not another six week stay) while continuing to receive the oral chemo but nothing else. After her counts recover at the end of her round she will have another bone marrow aspirate and hopefully at that time she will finally be in remission. I am not certain what would happen if she still has MRD but I am sure it will not be a good sign.
I was so blasted excited about being home for an entire ten more days that I bought the girls a new bedroom suite that (of course) needs to be stripped and repainted. You know, since I have all this free time. Today was so totally busy but in that happy way. I managed to plant mums, clean my floors, visit both Walmart and Trader Joes after doing the morning carpool, sand the new dressers, visit with my in laws and make a whole chicken in the crock pot for dinner. Mostly, I loved on my girls.
I have always loved the simple business of being a mom and I live for days like these where I am only nurturing, loving and being with my favorite people in the world. The hospital seems so very far away and for the next 9 days I shall pretend it doesn't even exist.
This really works out for me.
Monday, October 3, 2011
tomorrow (again)
Apparently I am running out of witty...most of my recent post titles are annoying even to me. Big halfhearted promises to improve on that after, say, leukemia is cured and I am working again will all of my own brain cells plus a good nights sleep.
Tomorrow at 10am Chad, Piper and I will be meeting with the Bone Marrow Transplant team at Egleston. There they will tell us what they feel is her best options at this point...as far as I know a transplant is still the goal but how they chose to treat those remaining leukemia cells in her until then has not yet been told to us. While we are meeting with the team we will also be having Piper checked out. They will be asking us questions about her and looking her over to ensure they feel she is in good enough health to go through with the rigors of a transplant. Praise God, Piper is in the best health of her little life. She is strong and this is a very good thing.
Leukemia is developed in the bone marrow. At some point it begins to spill out into her blood and that is when it is typically detected. If there are suspicious cells in her blood work that is a sign to hurry, otherwise we should have a little bit more time to line up ducks and take action. Tomorrows CBC will tell us whether we admit then or whether we are free for a few more days.
Um, Id like to be free if anyone is wondering.
On a much more exciting note, my Piper walked from our bed to the window...a good 7 steps, by herself. There were tears. And when Chad and I realized she was enjoying our Hershey's toffee/almond nugget chocolates, we were quick to use them to bribe her to do more walking. She is so close...I can feel it. Since she has the walker, life is just easier but walking independently would be divine.
Here are some pictures from today when I told myself to "get the hell out of your PJ's Susanna and engage in some retail therapy". We went to Target...there was no puking so it was a major success. Of course, Piper remembered where the Elmo display was IN THE BACK OF THE STORE and Linley cannot pass up anything with sequins on it without begging for it so it was not unlike herding whining sheep with walkers to get the two of them back to the trash bag and shampoo aisle.
I was so pooped after that trip that I drank TWO coca-colas at the Mexican restaurant for lunch with my mom and the girls...and they were gooood.
(both the girls and the coca-cola)
Tomorrow at 10am Chad, Piper and I will be meeting with the Bone Marrow Transplant team at Egleston. There they will tell us what they feel is her best options at this point...as far as I know a transplant is still the goal but how they chose to treat those remaining leukemia cells in her until then has not yet been told to us. While we are meeting with the team we will also be having Piper checked out. They will be asking us questions about her and looking her over to ensure they feel she is in good enough health to go through with the rigors of a transplant. Praise God, Piper is in the best health of her little life. She is strong and this is a very good thing.
Leukemia is developed in the bone marrow. At some point it begins to spill out into her blood and that is when it is typically detected. If there are suspicious cells in her blood work that is a sign to hurry, otherwise we should have a little bit more time to line up ducks and take action. Tomorrows CBC will tell us whether we admit then or whether we are free for a few more days.
Um, Id like to be free if anyone is wondering.
On a much more exciting note, my Piper walked from our bed to the window...a good 7 steps, by herself. There were tears. And when Chad and I realized she was enjoying our Hershey's toffee/almond nugget chocolates, we were quick to use them to bribe her to do more walking. She is so close...I can feel it. Since she has the walker, life is just easier but walking independently would be divine.
Here are some pictures from today when I told myself to "get the hell out of your PJ's Susanna and engage in some retail therapy". We went to Target...there was no puking so it was a major success. Of course, Piper remembered where the Elmo display was IN THE BACK OF THE STORE and Linley cannot pass up anything with sequins on it without begging for it so it was not unlike herding whining sheep with walkers to get the two of them back to the trash bag and shampoo aisle.
I was so pooped after that trip that I drank TWO coca-colas at the Mexican restaurant for lunch with my mom and the girls...and they were gooood.
(both the girls and the coca-cola)
Saturday, October 1, 2011
Yesterday.
Yesterday was quite possibly the most difficult day that I have had in ages. More difficult that diagnosis, more difficult than relapse even. Difficult, dark and despondent.
While out to lunch with Piper and some family, I received the results of the bone marrow aspirate from Tuesday. Pipers little body still has 2% cancer cells roaming about. She had 68% when she relapsed so there is a definite improvement but not enough that they consider her in remission. Because they were hoping that Piper would be in remission they have now begun calling St Judes and the National Cancer Institute to get additional opinions as to what is next.
We have a few options on the table:
1) more conventional chemo to achieve remission then a bone marrow transplant asap.
2) go to bone marrow transplant even with the few leukemia cells we see.
3) attempt experimental chemo and then a transplant.
All of these are possibilities...Dr. Bergsagel began making the calls on Friday and Chad and I have a consultation with the bone marrow transplant team on Tuesday at 10:00am to review Piper and to hear what plan they have all come up with. After that appointment at Egleston we will go over to Scottish Rite and have a clinic visit in which they will do the typical CBC and if there is leukemia showing up in her blood work we will be immediately admitted and chemo will begin again. If there is not suspicious cells within her blood work we will proceed aggressively with the treatment decided by the transplant team within a few days.
When I spoke with Dr. Bergsagel on Friday at lunchtime I felt a wave of pure terror roll over me. Physically my head began to throb, my chest began to ache and my fingertips became numb. Somehow I managed to ask more questions and I managed to confidently relay all of this information to my mom and sister and later, to Chad. I remember little of what I said. My fingertips did not regain feeling until dinnertime and my sobs were hugging the back of my throat with a ferocity that only fear can retain.
For the first time ever I allowed my thoughts to go there. To think of losing Piper. To acknowledge that the chance of losing her outweighs the chance that I will cry tears when she walks into her kindergarten class someday. And once I began to imagine how I would feel or how things would be without Piper Jean Needham growing in my care I lost it. It took 3 glasses of wine, one nighttime cuddle on a balcony with Piper, the company of dear friends, almost an entire bowl of chocolate, a warm fire on a chilly night and the way my Linley likes to dance to rise me out of my funk. When I crawled into bed with both girls and Chad I had calmed myself. I was no longer imagining how I would respond to people asking if Linley was my only child or what I would do with all of Pipers toys. I had forgotten the words I would speak over Pipers small body and how I thought I would handle seeing other children grow up while my own daughter was not given that option.
Let me be clear now. Nobody is saying this is the end. Medically speaking there are still many options...and we will do what it takes. She is not failing...she is fighting. Pipers oncology team is still tentatively optimistic for a cure, but the longer Piper fights the smarter her cancer grows. If I ever viewed leukemia with rose colored glasses ( and I don't think I ever have) I no longer do. I have seen too many families struggle, to many children die before their time and too many times I have hoped and prayed to not be tested that much.
Yesterday and today I cried. I allowed myself to feel the depths of my fears and I do not like it one bit. There is no time for whining or complaining. No time for fretting or fearing. All we have is the moments...hopefully, these moments will connect and Piper will have a long and beautiful life ahead of her. It is possible.
What is not possible is allowing those dark possibilities and plans to come to hinder my only goal. To love God. To serve Him. To attempt to be truly faithful despite what my heart feels...my soul rests in Him. I have a trust and an intimacy with God that I do not believe is possible before experiencing the head throbbing, chest aching, numb fingertips blatant knowledge we are nothing without Him. My emotions and whimsy have no place when I profess to trust Him.
"Trust in the Lord with all your heart
and lean not on your own understanding
in all your ways submit to Him
and He will direct your paths"
(Proverbs 3:5-6)
While out to lunch with Piper and some family, I received the results of the bone marrow aspirate from Tuesday. Pipers little body still has 2% cancer cells roaming about. She had 68% when she relapsed so there is a definite improvement but not enough that they consider her in remission. Because they were hoping that Piper would be in remission they have now begun calling St Judes and the National Cancer Institute to get additional opinions as to what is next.
We have a few options on the table:
1) more conventional chemo to achieve remission then a bone marrow transplant asap.
2) go to bone marrow transplant even with the few leukemia cells we see.
3) attempt experimental chemo and then a transplant.
All of these are possibilities...Dr. Bergsagel began making the calls on Friday and Chad and I have a consultation with the bone marrow transplant team on Tuesday at 10:00am to review Piper and to hear what plan they have all come up with. After that appointment at Egleston we will go over to Scottish Rite and have a clinic visit in which they will do the typical CBC and if there is leukemia showing up in her blood work we will be immediately admitted and chemo will begin again. If there is not suspicious cells within her blood work we will proceed aggressively with the treatment decided by the transplant team within a few days.
When I spoke with Dr. Bergsagel on Friday at lunchtime I felt a wave of pure terror roll over me. Physically my head began to throb, my chest began to ache and my fingertips became numb. Somehow I managed to ask more questions and I managed to confidently relay all of this information to my mom and sister and later, to Chad. I remember little of what I said. My fingertips did not regain feeling until dinnertime and my sobs were hugging the back of my throat with a ferocity that only fear can retain.
For the first time ever I allowed my thoughts to go there. To think of losing Piper. To acknowledge that the chance of losing her outweighs the chance that I will cry tears when she walks into her kindergarten class someday. And once I began to imagine how I would feel or how things would be without Piper Jean Needham growing in my care I lost it. It took 3 glasses of wine, one nighttime cuddle on a balcony with Piper, the company of dear friends, almost an entire bowl of chocolate, a warm fire on a chilly night and the way my Linley likes to dance to rise me out of my funk. When I crawled into bed with both girls and Chad I had calmed myself. I was no longer imagining how I would respond to people asking if Linley was my only child or what I would do with all of Pipers toys. I had forgotten the words I would speak over Pipers small body and how I thought I would handle seeing other children grow up while my own daughter was not given that option.
Let me be clear now. Nobody is saying this is the end. Medically speaking there are still many options...and we will do what it takes. She is not failing...she is fighting. Pipers oncology team is still tentatively optimistic for a cure, but the longer Piper fights the smarter her cancer grows. If I ever viewed leukemia with rose colored glasses ( and I don't think I ever have) I no longer do. I have seen too many families struggle, to many children die before their time and too many times I have hoped and prayed to not be tested that much.
Yesterday and today I cried. I allowed myself to feel the depths of my fears and I do not like it one bit. There is no time for whining or complaining. No time for fretting or fearing. All we have is the moments...hopefully, these moments will connect and Piper will have a long and beautiful life ahead of her. It is possible.
What is not possible is allowing those dark possibilities and plans to come to hinder my only goal. To love God. To serve Him. To attempt to be truly faithful despite what my heart feels...my soul rests in Him. I have a trust and an intimacy with God that I do not believe is possible before experiencing the head throbbing, chest aching, numb fingertips blatant knowledge we are nothing without Him. My emotions and whimsy have no place when I profess to trust Him.
"Trust in the Lord with all your heart
and lean not on your own understanding
in all your ways submit to Him
and He will direct your paths"
(Proverbs 3:5-6)
Wednesday, September 28, 2011
Makes me smile.
My Linley makes me smile.
There is a joy and simplicity about her little self that makes me smile a million times a day. She is smart. She is observant. She is compassionate. She continues to accept the mess that our life so often is and she is a stronger little lady because of it.
For two years she has thrust to the sidelines at a moments notice. She adores the times that I am able to squeeze quality time into and she abhors being without her sister at night. Because her new school is showering her with attention, prayer and encouragement she has been thriving regardless of our presence. I'm not sure how she maintains her sweet optimism but I am so very happy that she does...it soothes this soul.
Yet another thing my firstborn does a lot of these days, in the midst of making me smile, is practice her handwriting. And by practice her handwriting I mean she is writing on anything that will stay still long enough. (including on her bicep today at school but that's another story for another day) Linley doodles on this, Linley doodles on that, Linley writes me a note here, there and everywhere.
I love that.
Apart from having little notes spilling out of my purse at a moments notice, she has now begun writing notes to the general public. No door, wall or surface is safe from her and her sweet thoughts.
This just helps me to smile just a little more at each turn in my home.
(
(***the middle note reads like this:
Bunk bed rules
Not allowed under 6, but six and up you can
If you weigh more than 100 pounds you can
Linley is six.
If you are six you can come and if you are over six that is okay)
Now see if you can envision my girl composing little notes and not smile like I do.
There is a joy and simplicity about her little self that makes me smile a million times a day. She is smart. She is observant. She is compassionate. She continues to accept the mess that our life so often is and she is a stronger little lady because of it.
For two years she has thrust to the sidelines at a moments notice. She adores the times that I am able to squeeze quality time into and she abhors being without her sister at night. Because her new school is showering her with attention, prayer and encouragement she has been thriving regardless of our presence. I'm not sure how she maintains her sweet optimism but I am so very happy that she does...it soothes this soul.
Yet another thing my firstborn does a lot of these days, in the midst of making me smile, is practice her handwriting. And by practice her handwriting I mean she is writing on anything that will stay still long enough. (including on her bicep today at school but that's another story for another day) Linley doodles on this, Linley doodles on that, Linley writes me a note here, there and everywhere.
I love that.
Apart from having little notes spilling out of my purse at a moments notice, she has now begun writing notes to the general public. No door, wall or surface is safe from her and her sweet thoughts.
This just helps me to smile just a little more at each turn in my home.
(
(***the middle note reads like this:
Bunk bed rules
Not allowed under 6, but six and up you can
If you weigh more than 100 pounds you can
Linley is six.
If you are six you can come and if you are over six that is okay)
Now see if you can envision my girl composing little notes and not smile like I do.
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