I have always had a great affinity for the concept of 'Potential'. I remember my high school chemistry teacher's lesson on potential energy where she pointed to the ceiling and the thin air above where her imaginative "pet boulder" hung ready to fall yet amazingly it still clung to its ropes for the time being realizing its own potential only upon falling. Potential is what could be. It represents ambition and an ideal work ethic to seek out life's goals and adventures. The irony is that it is never fully attainable. Potential exists to show us what is possible and what we can shoot for. The idea of what's ahead if we put in the work now has always been a driving force for me. Being human denies the ability to be perfect. And rightly so. If we were perfect, how would we progress? Its important to learn something new everyday and its essential to stumble as you do only then to have the ability to pick yourself up better than before. I wonder where I would be if I stopped believing in what's possible. Seeking to fulfill potential opens up enriching experiences and of course cultivates hope when little else is there. I will always want today to be better than yesterday in some way, shape, or form. If it isn't....then I will try that much harder tomorrow.
We have come to the end of our incredible 3+ week break from Ellie's treatment that follows the final hospital stay of Interim Maintenance. I don't know how this worked out the way it did, but the three week window happened to be at the exact time of Christmas and New Years. So, not only did we get to open gifts on Dec 25th, but we got to enjoy a happy daughter for the days afterwards which included bike rides, visits with grandparents, some intriguing yet hysterical twin to twin conversations, and even a surprise trip up to stay in the Fairmont Hotel's Presidential Suite on New Years Eve. The recovery period has allowed her body to purge completely of the High Dose Methotrexate and recover her blood counts from the remnants of the 6MP she finished up on Dec 24th. Time truly flies. She has been in remission now for 5 months.
The goal is to be as strong as possible, health wise, for the next and final phase of front line treatment so aptly named - Delayed Intensification or "DI" for short. We have been warned about this phase from the very beginning. It is supposed to be the harshest treatment she will receive in the entire protocol with perhaps the slight exception of those horrible first few weeks we went through during Induction in early July. The various doses and number of drug administrations is actually not that bad. We go in once a week on an out patient basis for 8 weeks for either shots or drugs pushed through her port in short time spans. But, her white blood cell count will likely go down to near zero and thus her energy will be sapped and the likelihood of getting a cold or infection will be very high. We will probably return to the frequent blood transfusion rate we had during Aug and Sept for Consolidation. For the initial three weeks, we also get back on the Dexamethasone (steroid) which causes large mood swings and huge appetites (remember our yogurt demand from summertime?!)
I don't think there really is such a thing as over-preparing. The idea is to understand completely what's in front of you, ask enough questions to feel out what might happen every step of the way, and then take any and all steps to make this as painless as possible. My players on the team often get more info than they ever really wanted to know regarding an opponent. I know very well that 100% of it being retained is not going to happen. The hope in my eyes is that if you can build up an opponent enough, once the game hits it is much easier to be in the thick of things and say to yourself that this wasn't as bad as you thought it would be OR that the preparations helped anticipate their every move and thus were quite effective. It is a far better outcome than underestimating and being shocked once you are there. Regardless, attention to detail is without question essential. So, we're treating this DI phase very seriously.
She'll be receiving 8 different chemo drugs over the course of the 8 weeks. We go in for labs tomorrow to qualify her for the expected start date of Tuesday (Jan 3rd). Once she qualifies with ANC levels above 750 (she was at 590 on Friday so fingers crossed!), she'll get the first four weeks of chemo regardless of what her counts are after Tuesday. She'll then need to qualify for the second 4 weeks at the mid point of the phase. Tuesday she will have another LP procedure (Lumbar puncture) to receive the intrathecal Methotrextate injections as she has many times before. We maintain a negative presence of Leukemia in her Central Nervous system and don't intend for one minute to let it start now. The LP's are the weapon of choice, so to speak and do a great job. She then receives a new drug, Doxorubicin through her port and our good "friend" Vincristine. We'll start giving her steroids at home orally for weeks 1 and 3 of DI. I will be sad to see her beautiful face puff up again as its been 5 months since we've had this particular drug, but she'll bravely take it no questions asked as she has always done. Then, we will be on some serious lockdown for the months of January and February to keep the cold bugs away.
It is very difficult after a couple great holidays with happy kids to have to turn to reality and get back to clinic visits. This extended break we've had has shown us a glimpse of what sort of potential the future holds when she finishes treatment. Polly and I still get amazed at how she and Timmy are growing as kids do between ages 2 and 3. Their vocabulary continues to expand exponentially and their ability to reason why things happen and where various excursions will take them is simply huge fun for us. Timmy continually refers to himself in the 3rd person (in fact I think he believes persons 1 & 2 are firmly against all things Elmo and thus they are banished from any and all forms of conversation - remind me to thank Sir Elmo for grammatical challenges we will face later in life because of this) :) Ellie will then put him in check when he is being out of line by simply raising her index finger and sternly but eloquently saying, "timmMMEEE! Ah-No, No, NO!" Forgive me if I have already mentioned this before, but we use the counting-to-10 rule when it is time for a particular toy to be given to the other sibling who is waiting their turn to play with it....and most times with either of them I don't even get to 5 before one hands it to the other willingly. It does nothing for the volume factor sometimes between the two, but it is a small victory nonetheless that we haven't had to work very hard to achieve. It is also another sign to me that if Ellie were to have to go through this battle without Timmy by her side, this would all be ten times worse.
2011 ended yesterday with Polly and I being able to stare out of the same window we peered out of for the first time as husband and wife on the night of our wedding. Never in a million years thought we would be back in that room 23 floors up atop Nob Hill in the city, but as chance would have it, it happened....and this time the twins were snoozing 20 feet away while we did. Some dreams realized and many more to come. Polly counted that between both the kids this year, we spent 61 nights in the hospital. That's unbelievable and it is unfair. It was a year that I am glad is behind us and one that has shaped, whether we fully grasp it right now on Jan 1st or not, the potential of 2012. I will do everything I can until I cannot move another muscle to make sure this year is better. I don't have much say in the cancer world, but I do have the ability to support, the ability to reach out my hand, and the ability to progress through plain hard work. At the end of DI, we will be done with front line treatment and enter into the Long Term Maintenance which we are told is where Ellie's world gets back to more normal standards. So, there is a vast potential to be found and fulfilled as we enter this rough patch ahead but with a milestone in sight. Coach Valvano said, "In order to know where you are going....you have to know where you are coming from". I won't have too many fond memories of 2011 and I will note that it was a year that changed our lives forever. BUT, it has also expanded our horizons and brought a perspective that I will never stop saying thank you for.
We appreciate your prayers in the weeks upcoming. Today marks a new day and new beginning for a year that can have all the promise and potential a 2 year old deserves. I am going to faithfully accept that to be the truth and jump right in....so let's go. Delayed Intensification - here we come.
Sunday, January 1, 2012
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.
Merry Christmas
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.
Wednesday, November 30, 2011
Baptism - Day 156
Both kids are into this particular 3 min video clip right now on you-tube that shows a small girl feeding, riding, and grooming her horse, Strawberry. When the clip ends, suddenly 2 pairs of eyes shoot upward at one of us and proclaim in unison "AGAIN". And we play the clip one more time only to see the same result repeat itself several more times. They want to press on and keep going despite the growing feeling the ride on ol' Strawberry is wearing out its welcome and getting old. From their vantage point, every time the clip starts, the ride begins anew. Fresh, exciting, and carefree. Its a lesson for the bigger roller coaster in the room where the exit is no whereto be found for the time being.
So, AGAIN we go. This time I am happy to report we're on an upswing. Ellie's residual chemo in her system finally left her sometime Sunday after Thanksgiving. By the next day her energy was back, her mouth sores had subsided, she ate a couple of grand meals, and this morning she climbed onto my bed while I still had my eyes closed and "honked" my nose a few times to make sure I was awake. I think I told you earlier that when she finally turns a corner, she does so in a remarkable way. Its the kind of bounce back that makes you feel like anything is possible. Well for the moment it means we can have a few dinners at home, take some Christmas pictures on Friday, and dance in the living room to Coldplay's "Every Teardrop is a Waterfall" (Requested now by Ellie on a regular basis - who knew she had good taste in music?!). You should see her dance....moving her arms side to side and stomping her feet while she spins til she's falls over dizzy like she's about to audition for Footloose. It's hysterical and amazing all at the same time. Timmy has just recently found the volume button on the ipod as well, so we are certainly not shy on being able to overwhelm the dancing space with sound. Any why the heck not? Let's dance - AGAIN.
We have labs tomorrow to check her blood counts. Her ANC value was low last time so it will need to have risen in the last four days if we are to qualify for the last in-patient chemo for IM, which would begin this coming Monday. Her mood right now suggests this is a good bet. We've been very lucky not to have had any delays to this point in IM and though we will soon have another go around with the mouth sores, queasy stomach, and long fits with tears, at least after one more in-patient stay we know we'll be another step closer. I think even though her periodic rebounds after rough spells are known to be inevitable with routine chemotherapy, there is a part of Polly and I that grasp a hold of it with both hands like its our first experience with feeling better. The lesson in perseverance fuels the work ethic we aspire to have everyday to be "on" at all times.
The now several fellow cancer parents we have met both in person at LPCH or interacted with online on the LLS message/sharing boards are not people we would have known prior to June 26th. But the enrichment felt with small messages between them, be it directly or indirectly, bring an incredible sense of family. So, when Polly and I are "on", especially during in-patient stays....there is relief in numbers when you can share a few moments with somebody going through the same thing. I tell you this because two families who are regulars on the message boards we are a part of saw their kids relapse in the last two weeks. While Polly and I know we're still on a good path as of right now, reading the shock and disbelief for a set of parents who have already been through so much brings on anger and sadness. I'm not the type of person who can ignore these possibilities. You can bet that upswings bring huge fillers of hope where thoughts of invincibility come to mind, but I will never be naive to what we're up against. When you can't get off the ride, sometimes those in the seats in front and behind you are who you have to count on. So, I am praying for their kids tonight - Jakob & Leanne. Their parents deserve Leukemia world wagons to be circled, millions strong! What else can we do? We have sympathy and comfort first but then there must be faith encouraged to no end in the medicine, both physical and spiritual with Hope as the guide. With Ellie in a good state tonight, I'm ready to slay a few dragons for them. You have to Hope. You HAVE TO.
We have been given the gift of opportunity this coming Sunday. An opportunity to begin again, renew our faith, and put T & E in God's hands so they may thrive. Yes, Thrive (What a word!). We'll be baptizing them at St Gregory's in San Mateo at 2pm under the guiding hand of Father Joe, who has been an enormous support for us while I've worked at Serra. I am nothing but humbled with the chance to take part in this. The church has plenty of room and all are welcome. Despite sleepless nights, mouth sores, and thoughts of doing this all over again in 5 days time.....we have dancing, we have hopeful prayers, and through baptism, we get to begin AGAIN. That's a full week. That's a helluva week.
Speaking of week of weeks, we are in the midst of the annual "Jimmy V Cancer Awareness Week" which culminates next Tuesday night with a double header of college basketball promoted for the past 16 years by ESPN to help raise enormous amounts of funds for cancer research. In between the two games (roughly around 6pm Pacific Time), they will show the immortal speech Coach Valvano gave at the 1993 ESPY award ceremony about a month before cancer took his own life. Its worth every second. So, in the hustle and bustle of the pre-Christmas season, perhaps add a few things to your list - put yourself on the bone marrow donor list, find time to give a pint of blood to the Red Cross, and consider giving to the "V Foundation". To paraphrase Jimmy's words as I watched Ellie dance tonight, "Cancer can try to take away all her physical abilities....but it cannot touch her mind, it cannot touch her heart, and it cannot touch her soul."
We're gonna beat this thing, El. Daddy is making you a promise.
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