Merry Christmas
Sunday, December 25, 2011
Christmas Joy - Day 181
I don't think words can adequately express the thankfulness we have on a day like today. So we'll let a picture say it instead. This is our beautiful little girl and leukemia warrior on Christmas Eve....thriving in her own right and making us all better people in the process. Now THAT is something to celebrate.
Monday, December 19, 2011
Advent - Day 174
No news is good news, right?! Between Ellie's schedule, final exams/mountains of grading, coaching, the holidays, and of course peeling small but intent 2 year olds off of furniture parts they are not supposed to be on....the blog has taken a back seat for several days. Once Ellie got discharged from her final IM hospital stay on Dec 12th, we've been able to spend a week in relatively calm waters just doing what we do this time of year. I would say a few months ago I would spend the more "normal" times with a very nervous and guarded optimism, which is important because the bigger picture is never lost around here, but can be very hazardous to your endurance. Polly and I now enjoy these days so much when she's feeling good that I can only describe it as similar to closing your eyes, turning the music on, and just immersing yourself for whatever time you have that day to do so. Today we had a major breakthrough on the potty training front, something we are not able to do very consistently (or normally if you will) with Ellie (unlike other kids her age) because her digestive system is so out of whack from the chemo. But today, there was progress and she knew it. Priceless smiles and applauding were plentiful this afternoon as a result.
The latest in-patient stay at El Camino went by fairly quickly. She cleared the Methotrexate in record time for her four stays over the entire Interim Maintenance (IM) phase. The pattern after discharge has been that she gets home happy and stays that way for about two days. The Chemo side effects then usually slam her about day 3 after discharge with Thanksgiving week being the worst episode as I am sure you read a while back. This past week, she did take a turn on Thursday with the appearance of some mouth sores but overall the effects have been much milder than the last time. And AMEN to that. The Popsicle remedy turned out to be a bust. She just didn't like the taste of them thus reinforcing the a lesson we have learned many times when seeking advice - every child reacts differently to different things at different times along the chemotherapy path. Polly does an incredible job of anticipating side effects right as they are about to come on by hitting them with our arsenal of prescription drugs. Two in particular have been great - Glutamine helps to lessen the mouth sore magnitude and Ativan helps alleviate nausea, pain, and also aids with sleep. She was definitely feeling better this morning, enough so that we took an excursion to Serra to pick up some of my materials to be graded and spent a few minutes out on the field kicking the soccer ball into the goal. Best accuracy in town from the 1 inch line! She's gonna be a lefty like her Dad. :)
Her blood counts in her follow up visit to LPCH (post in-patient stay) this week were great. ANC up at 1800. No need for any transfusions. The residual chemo in her body may decrease that value over the next couple of weeks, but she really has done nicely this whole phase with recovery. I'll never say Never, but theoretically we are done for good with the mouth sore inducing HD MTX drug. Currently, we are in a 3 week recovery segment. 2 weeks to finish off IM, and then a third week that buffers the start of the next phase of treatment so she can get her counts up even higher. We give her Mercaptopurine (6-MP) in nightly doses after dinner time and will do so through Dec 23rd which also will likely suppress her counts a bit as well. We have one final lab day before Christmas on the 23rd to check her counts. The hope is that she is not Neutropenic so we can go out a little bit on Christmas Day to see family....but frankly that concern is so minor because I'm just happy that she will be home. They have warned us the next 8 weeks of treatment, so aptly named "Delayed Intensification" (DI), is going to be the roughest round of treatment yet. We are scheduled to begin Day 1 of DI on Dec 30th, so I'm going to save any worries for what's ahead until then. For now - its Christmas time.
The Advent season always seems to be a lot about preparations and anticipation of what's to come. On the twins' level, its about scampering up the stairs every morning to seek out Eddie Elf's new observation deck locale and then turning to dig out the day's treat from my mom's supremely quilted Advent calendar that we have hanging in the living room. The four of us polished off the tree decorations this past Thursday night and even this morning there was our first ever conversation (ok, first that I was privy to be a part of ) about what sorts of items we should be prepared to leave for Santa and his reindeer on Christmas Eve. Within all of these details, there is a undoubtedly a promise of something bigger ahead. Advent allows us time to reach out and bring together those we love so that we can bear witness together when those promises are finally fulfilled. How that occurs is different every year and thus is the magic of Christmas for me. Faith, Hope, Love and Family. Perhaps we won't be able to go far from home next Sunday. Not sure we'll really need to.
The latest in-patient stay at El Camino went by fairly quickly. She cleared the Methotrexate in record time for her four stays over the entire Interim Maintenance (IM) phase. The pattern after discharge has been that she gets home happy and stays that way for about two days. The Chemo side effects then usually slam her about day 3 after discharge with Thanksgiving week being the worst episode as I am sure you read a while back. This past week, she did take a turn on Thursday with the appearance of some mouth sores but overall the effects have been much milder than the last time. And AMEN to that. The Popsicle remedy turned out to be a bust. She just didn't like the taste of them thus reinforcing the a lesson we have learned many times when seeking advice - every child reacts differently to different things at different times along the chemotherapy path. Polly does an incredible job of anticipating side effects right as they are about to come on by hitting them with our arsenal of prescription drugs. Two in particular have been great - Glutamine helps to lessen the mouth sore magnitude and Ativan helps alleviate nausea, pain, and also aids with sleep. She was definitely feeling better this morning, enough so that we took an excursion to Serra to pick up some of my materials to be graded and spent a few minutes out on the field kicking the soccer ball into the goal. Best accuracy in town from the 1 inch line! She's gonna be a lefty like her Dad. :)
Her blood counts in her follow up visit to LPCH (post in-patient stay) this week were great. ANC up at 1800. No need for any transfusions. The residual chemo in her body may decrease that value over the next couple of weeks, but she really has done nicely this whole phase with recovery. I'll never say Never, but theoretically we are done for good with the mouth sore inducing HD MTX drug. Currently, we are in a 3 week recovery segment. 2 weeks to finish off IM, and then a third week that buffers the start of the next phase of treatment so she can get her counts up even higher. We give her Mercaptopurine (6-MP) in nightly doses after dinner time and will do so through Dec 23rd which also will likely suppress her counts a bit as well. We have one final lab day before Christmas on the 23rd to check her counts. The hope is that she is not Neutropenic so we can go out a little bit on Christmas Day to see family....but frankly that concern is so minor because I'm just happy that she will be home. They have warned us the next 8 weeks of treatment, so aptly named "Delayed Intensification" (DI), is going to be the roughest round of treatment yet. We are scheduled to begin Day 1 of DI on Dec 30th, so I'm going to save any worries for what's ahead until then. For now - its Christmas time.
The Advent season always seems to be a lot about preparations and anticipation of what's to come. On the twins' level, its about scampering up the stairs every morning to seek out Eddie Elf's new observation deck locale and then turning to dig out the day's treat from my mom's supremely quilted Advent calendar that we have hanging in the living room. The four of us polished off the tree decorations this past Thursday night and even this morning there was our first ever conversation (ok, first that I was privy to be a part of ) about what sorts of items we should be prepared to leave for Santa and his reindeer on Christmas Eve. Within all of these details, there is a undoubtedly a promise of something bigger ahead. Advent allows us time to reach out and bring together those we love so that we can bear witness together when those promises are finally fulfilled. How that occurs is different every year and thus is the magic of Christmas for me. Faith, Hope, Love and Family. Perhaps we won't be able to go far from home next Sunday. Not sure we'll really need to.
Friday, December 9, 2011
Maintaining - Day 164
I've always thought you meet people for a reason. Though that reason may not be clear to you at the time, there is likely clarity to come at some future date. I've professed to my students at times that I try to learn at least one thing new everyday. There is no end to that desire because there is always room for growth. And so, as I come to know a few more folks each day and make this world a little smaller, I find myself gathering these lessons in the back of my head for a time when their wisdom will help show the way....likely at a time when I'll need them the most.
The very kind U-Haul store clerk that helped me a few months ago is still a voice fresh in my head with words of prayers and encouragement. We received a while back a personal note of incredible support from the nurse at our pediatrician's medical group who was working the Urgent Care unit back on June 26th and knew Ellie's blood test results before we did. With "comfort" being almost non-existent on that day, she took the time to sit with Polly in that doctor's office after the news came. It wasn't much, but it was something. This past week in the clinic, Polly also had some time to sit and chat with a mom who has a 4 year old daughter diagnosed with ALL not even 24 hours after Ellie. We indirectly met them during that first weekend in the hospital as fate would have it because we shared the only double room in the LPCH cancer wing for a night. In their conversation, she told Polly about a method to deal with mouth sores which nearly erased them for her daughter a couple weeks ago. Popsicles. No doctor has ever mentioned anything of the sort to us. I figure only another mom, who I am sure is tirelessly searching for answers, would know this stuff. We will of course be trying this as soon as humanly possible.
Ellie has been doing very well since she purged the chemo from her system after Thanksgiving weekend. We have been very fortunate to just be enjoying the time together and maintain. Her appetite has returned in full and her weight has popped back up a bit as a result. She gleefully sat through some Christmas photos last Friday and has found a new love in Candy Canes. My mom bought us this "Magic" Elf that you put around the house in various locations for the kids to find each morning symbolizing Santa watching them and making sure they are being good ahead of Christmas Day. Really great gift for young people. The Elf, or "Eddie" as El calls him (The name "Phil" just did not sit right with her), produces exclamations you only see on game shows when people win new cars. The Baptism last Sunday was a great day as well. We were able to hang out with lots of family and see her run around like a normal 2 year old. While being her usual brave self to go first through the ceremony, she quickly sat up and proclaimed to everyone that it was now "TIMMY'S TURN!" Lead the way, El, lead the way.
She did not meet her blood counts last Monday for admittance to the hospital for her last round of IM Chemo. We tried again on Wednesday and though her ANC value had risen, she was still below the 750 qualifying mark. So, we are officially one week delayed from the protocol but this was explained as a normal occurrence and honestly I somewhat expected it to happen earlier than this, so we're OK. Her hemoglobin and platelets are at normal levels now which is fantastic because it means no transfusions and that her energy level will remain high. She goes in tomorrow morning (Friday) for another try and then hopefully get admitted for the weekend. This will be the last dose of HD Methotrextate she'll receive if all continues to run smoothly. In IM, we have often been running into appointment setbacks. The cog in the LPCH cancer treatment routine wheel is in the logistics of handling the hundreds of patients they have on a daily basis. Its understandable, but the seemingly overworked scheduling staff can sometimes be a little too robotic and attempt to push dates back because they don't think they can "work us in". Polly and I are convinced we met these folks for the simple reason that we were meant to figure out fast how to advocate for our daughter....and in doing so, be as loud and as clear as possible. Cancer doesn't understand space limitations on appointment calendars. But I'll tell you a 2 yr old with an attorney for a mom gets squeezed in after just one phone call everytime. My wife rocks.
You have to maintain to preserve strength. Besides the evenings and weekends I get to spend with Polly and the twins, I maintain by doing what I can with those I work with on a daily basis. It is a blessing to teach and I embrace everyday even if it's just a relief from personal worry. The community derived from an educational environment brings people together to solve problems and find a way through together. If anything, it is the ability to lend a helping hand. We do have our few tough love moments in the classroom, but ultimately we make progress even if in the smallest increments. The students give me challenges and lessons on a daily basis that demand my support. And I am happy to give it where possible. I can't say I walk through all my lessons learned with grace though. There is a time from about 2 years ago that has stuck out in mind recently. When Timmy was in for his first eye surgery at age 6 months, I sat in the waiting room at Oakland Children's hospital kind of staring off into space. About 30 feet from me was another mother and her friend waiting for their own infant child to come out of exploratory ear surgery. Their doctor came out before ours did and so I overheard his findings. He explained to the mom that her child was born with a defect in his ears which means he is now and always will be deaf. I saw her breakdown and then get immediately visited by a social worker who took them to another place for a chat about next options. All of this went on as I sat in silence and the only thought in my mind was simply - "Thank God, that's not my child". Well done, Jeff. (deep breath) I never actually met the mother that day, but I wish now that I had. I certainly could have done something other than sit in silence and think about me. Imagine all of the people we have met through this experience saying something like that and then walking away. Not my finest hour. A silent prayer right then and there would have been better than nothing at all....let alone offering a small statement of support to her. I did not understand this next level of value in a supportive community like I do now. Yes, its about doing the right thing, but more importantly I think it is about me continuing to do my part. Hard lesson learned since then for absolute certain.
We've been blessed with an outpouring of support from so many people we don't know. While we maintain strength for the task at hand with regards to Ellie, I cannot help but feel my priorities being slightly rearranged so that the support we stand on now is sturdy enough to be offered for others in need to stand with us. There is no choice here - you have to. It is what makes this cancer community such an amazing group of human beings and we're proud to be an active part. At the end of the day, its about putting your hands in to the middle of the team circle full of people you have met along the way and giving a quick little cheer for the sake of unity with purpose. When you get up the next day, its time to fulfill the roll you've been called to do and recognize the lessons of those around you. In doing so, Ellie is one step closer to being cured. Think so? I know so.
The very kind U-Haul store clerk that helped me a few months ago is still a voice fresh in my head with words of prayers and encouragement. We received a while back a personal note of incredible support from the nurse at our pediatrician's medical group who was working the Urgent Care unit back on June 26th and knew Ellie's blood test results before we did. With "comfort" being almost non-existent on that day, she took the time to sit with Polly in that doctor's office after the news came. It wasn't much, but it was something. This past week in the clinic, Polly also had some time to sit and chat with a mom who has a 4 year old daughter diagnosed with ALL not even 24 hours after Ellie. We indirectly met them during that first weekend in the hospital as fate would have it because we shared the only double room in the LPCH cancer wing for a night. In their conversation, she told Polly about a method to deal with mouth sores which nearly erased them for her daughter a couple weeks ago. Popsicles. No doctor has ever mentioned anything of the sort to us. I figure only another mom, who I am sure is tirelessly searching for answers, would know this stuff. We will of course be trying this as soon as humanly possible.
Ellie has been doing very well since she purged the chemo from her system after Thanksgiving weekend. We have been very fortunate to just be enjoying the time together and maintain. Her appetite has returned in full and her weight has popped back up a bit as a result. She gleefully sat through some Christmas photos last Friday and has found a new love in Candy Canes. My mom bought us this "Magic" Elf that you put around the house in various locations for the kids to find each morning symbolizing Santa watching them and making sure they are being good ahead of Christmas Day. Really great gift for young people. The Elf, or "Eddie" as El calls him (The name "Phil" just did not sit right with her), produces exclamations you only see on game shows when people win new cars. The Baptism last Sunday was a great day as well. We were able to hang out with lots of family and see her run around like a normal 2 year old. While being her usual brave self to go first through the ceremony, she quickly sat up and proclaimed to everyone that it was now "TIMMY'S TURN!" Lead the way, El, lead the way.
She did not meet her blood counts last Monday for admittance to the hospital for her last round of IM Chemo. We tried again on Wednesday and though her ANC value had risen, she was still below the 750 qualifying mark. So, we are officially one week delayed from the protocol but this was explained as a normal occurrence and honestly I somewhat expected it to happen earlier than this, so we're OK. Her hemoglobin and platelets are at normal levels now which is fantastic because it means no transfusions and that her energy level will remain high. She goes in tomorrow morning (Friday) for another try and then hopefully get admitted for the weekend. This will be the last dose of HD Methotrextate she'll receive if all continues to run smoothly. In IM, we have often been running into appointment setbacks. The cog in the LPCH cancer treatment routine wheel is in the logistics of handling the hundreds of patients they have on a daily basis. Its understandable, but the seemingly overworked scheduling staff can sometimes be a little too robotic and attempt to push dates back because they don't think they can "work us in". Polly and I are convinced we met these folks for the simple reason that we were meant to figure out fast how to advocate for our daughter....and in doing so, be as loud and as clear as possible. Cancer doesn't understand space limitations on appointment calendars. But I'll tell you a 2 yr old with an attorney for a mom gets squeezed in after just one phone call everytime. My wife rocks.
You have to maintain to preserve strength. Besides the evenings and weekends I get to spend with Polly and the twins, I maintain by doing what I can with those I work with on a daily basis. It is a blessing to teach and I embrace everyday even if it's just a relief from personal worry. The community derived from an educational environment brings people together to solve problems and find a way through together. If anything, it is the ability to lend a helping hand. We do have our few tough love moments in the classroom, but ultimately we make progress even if in the smallest increments. The students give me challenges and lessons on a daily basis that demand my support. And I am happy to give it where possible. I can't say I walk through all my lessons learned with grace though. There is a time from about 2 years ago that has stuck out in mind recently. When Timmy was in for his first eye surgery at age 6 months, I sat in the waiting room at Oakland Children's hospital kind of staring off into space. About 30 feet from me was another mother and her friend waiting for their own infant child to come out of exploratory ear surgery. Their doctor came out before ours did and so I overheard his findings. He explained to the mom that her child was born with a defect in his ears which means he is now and always will be deaf. I saw her breakdown and then get immediately visited by a social worker who took them to another place for a chat about next options. All of this went on as I sat in silence and the only thought in my mind was simply - "Thank God, that's not my child". Well done, Jeff. (deep breath) I never actually met the mother that day, but I wish now that I had. I certainly could have done something other than sit in silence and think about me. Imagine all of the people we have met through this experience saying something like that and then walking away. Not my finest hour. A silent prayer right then and there would have been better than nothing at all....let alone offering a small statement of support to her. I did not understand this next level of value in a supportive community like I do now. Yes, its about doing the right thing, but more importantly I think it is about me continuing to do my part. Hard lesson learned since then for absolute certain.
We've been blessed with an outpouring of support from so many people we don't know. While we maintain strength for the task at hand with regards to Ellie, I cannot help but feel my priorities being slightly rearranged so that the support we stand on now is sturdy enough to be offered for others in need to stand with us. There is no choice here - you have to. It is what makes this cancer community such an amazing group of human beings and we're proud to be an active part. At the end of the day, its about putting your hands in to the middle of the team circle full of people you have met along the way and giving a quick little cheer for the sake of unity with purpose. When you get up the next day, its time to fulfill the roll you've been called to do and recognize the lessons of those around you. In doing so, Ellie is one step closer to being cured. Think so? I know so.
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