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.
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.
Friday, November 25, 2011
Thankful - Day 150
My 11th grade english teacher taught me a literary lesson I certainly won't forget. Maybe not a single lesson persay as it is more of method to look between the lines for deeper meaning in a story. If knowledge is power then finding unwritten meaning in such a manner is where power meets clarity. With clarity comes peace. Its understanding from all angles, so to speak. There were 2-3 books we read in class that year each with a supporting character that had the initials J.C. I'm no literary scholar but the use of such a tool was very meaningful and enriching. A tangible Christ like character that saves the day in an indirect manner but with a striking and, more importantly, lasting impression. J.C's make poignant decisions, sacrifice for the greater good, and find a way to reassure everyone else in a way that is unquestionable. Collectively the main characters benefited from JC's actions....but to find an end to their own journey, they all had to eventually find their own way home.
Since those days in junior english I've watched for J.C. to show up in things I've read or seen. Its kinda fun to look for actually. John Coffey in The Green Mile and Jimmy Chitwood in Hoosiers are two of my favorites. Both men make those around them better and each can provide relief to suffering in a way no one else can. Chitwood's stone cold confidence in putting his coach, team, and entire town on his shoulders when everyone was looking at him to do just that is a Hollywood miracle, yes, but provides food for thought to those of us that have to go at this thing on our own. Real life doesn't really allow for such a character to swoop in and provide that ultimate relief. My mind can't help but keep searching for a form of that person though. Trust me, we often want our doctors to have all of the answers and are persistent with questions hoping we might be the first to know with 100% certainty that she will be cured. In that search I know I will likely finish many conversations in the same place I started - still worried that my daughter has a life threatening disease. But even if I cannot find that lasting peace for a while, I am thankful tonight for the ability to believe that pieces of J.C. show themselves in various forms through several people everyday.
We were able to bring Ellie home on Sunday and that was a blessing. She was full of life on Monday and we kinda ran through the day like we were normal. By Wednesday the chemo had started to hit her very hard. One of the awful side effects of the methotrexate are these mouth sores. They are big, painful, and make her world miserable. Couple that with onset of the nausea that shows itself typically 3-4 days after the HDMTX has been given and it just kinda snowballs on her. Our Thanksgiving was not in the hospital and for this I am grateful, but the toll on her has wiped away any fun she was having earlier in the week and Turkey day came with a lot of tears.
Last night was a 3am wake up call where we are trying to figure which of the meds to give that will ease her pain. She was pretty queasy all day Thursday and did not eat or drink hardly anything. Fortunately, we had labs set up for today (Friday) at the clinic as per our schedule after being discharged last weekend. So, we were able to get a look at her blood counts and get some IV fluids for her. She's dipped under the neutropenic line again. Staying home for the next few days is now a must. They gave us a more powerful pain med to help but really it seems the message coming out of the clinic is grin and bear it while making her as comfortable as possible. (See why it would be nice if I could just take her over to John Coffey's cell for 2 minutes about now) Ellie screaming for 20 minutes is doable, but over a few hours complete with an upset stomach is not something I would wish on anyone.
Today, one of our favorite nurses came to see Polly and El while she sat and got her fluids today in the clinic. She mentioned that the teenagers who are fighting Leukemia at LPCH almost always say that this part with the severe mouth sores is the absolute worst of the entire treatment protocol. This being said to us during what is supposed to be a lighter phase ahead of our most difficult phase of treatment in a month's time. But you know I thought about this when Polly told me about the conversation this afternoon. If this is one of the hardest parts, then right there is some small reassurance that we can handle what's ahead assuming we survive the weekend (and we will survive the weekend). I'm not going to say that I don't doubt from time to time....because I do. This struggle is all encompassing and emotionally exhausting. But like a J.C. character, the nurse today without saying it directly was offering a calming voice that related and reassured. That's amazing.
So, now we just try to wait this out. Though she didn't eat much the last two days, she did manage to ask for and then devour 5 bites of pumpkin pie. 12 hours of on/off tears and not all is completely lost around here. Pumpkin Pies by Jane Craft? Not sure because the pie boxes were thrown away by the time the pie came to us....but it wouldn't surprise me at all. I am thankful this Thanksgiving for the hope provided in the small but daily doses from people who care when they don't have to. In some of our desperation to ease her pain on days like today, remembering those moments are as solid as a Jimmy Chitwood jumpshot.
Since those days in junior english I've watched for J.C. to show up in things I've read or seen. Its kinda fun to look for actually. John Coffey in The Green Mile and Jimmy Chitwood in Hoosiers are two of my favorites. Both men make those around them better and each can provide relief to suffering in a way no one else can. Chitwood's stone cold confidence in putting his coach, team, and entire town on his shoulders when everyone was looking at him to do just that is a Hollywood miracle, yes, but provides food for thought to those of us that have to go at this thing on our own. Real life doesn't really allow for such a character to swoop in and provide that ultimate relief. My mind can't help but keep searching for a form of that person though. Trust me, we often want our doctors to have all of the answers and are persistent with questions hoping we might be the first to know with 100% certainty that she will be cured. In that search I know I will likely finish many conversations in the same place I started - still worried that my daughter has a life threatening disease. But even if I cannot find that lasting peace for a while, I am thankful tonight for the ability to believe that pieces of J.C. show themselves in various forms through several people everyday.
We were able to bring Ellie home on Sunday and that was a blessing. She was full of life on Monday and we kinda ran through the day like we were normal. By Wednesday the chemo had started to hit her very hard. One of the awful side effects of the methotrexate are these mouth sores. They are big, painful, and make her world miserable. Couple that with onset of the nausea that shows itself typically 3-4 days after the HDMTX has been given and it just kinda snowballs on her. Our Thanksgiving was not in the hospital and for this I am grateful, but the toll on her has wiped away any fun she was having earlier in the week and Turkey day came with a lot of tears.
Last night was a 3am wake up call where we are trying to figure which of the meds to give that will ease her pain. She was pretty queasy all day Thursday and did not eat or drink hardly anything. Fortunately, we had labs set up for today (Friday) at the clinic as per our schedule after being discharged last weekend. So, we were able to get a look at her blood counts and get some IV fluids for her. She's dipped under the neutropenic line again. Staying home for the next few days is now a must. They gave us a more powerful pain med to help but really it seems the message coming out of the clinic is grin and bear it while making her as comfortable as possible. (See why it would be nice if I could just take her over to John Coffey's cell for 2 minutes about now) Ellie screaming for 20 minutes is doable, but over a few hours complete with an upset stomach is not something I would wish on anyone.
Today, one of our favorite nurses came to see Polly and El while she sat and got her fluids today in the clinic. She mentioned that the teenagers who are fighting Leukemia at LPCH almost always say that this part with the severe mouth sores is the absolute worst of the entire treatment protocol. This being said to us during what is supposed to be a lighter phase ahead of our most difficult phase of treatment in a month's time. But you know I thought about this when Polly told me about the conversation this afternoon. If this is one of the hardest parts, then right there is some small reassurance that we can handle what's ahead assuming we survive the weekend (and we will survive the weekend). I'm not going to say that I don't doubt from time to time....because I do. This struggle is all encompassing and emotionally exhausting. But like a J.C. character, the nurse today without saying it directly was offering a calming voice that related and reassured. That's amazing.
So, now we just try to wait this out. Though she didn't eat much the last two days, she did manage to ask for and then devour 5 bites of pumpkin pie. 12 hours of on/off tears and not all is completely lost around here. Pumpkin Pies by Jane Craft? Not sure because the pie boxes were thrown away by the time the pie came to us....but it wouldn't surprise me at all. I am thankful this Thanksgiving for the hope provided in the small but daily doses from people who care when they don't have to. In some of our desperation to ease her pain on days like today, remembering those moments are as solid as a Jimmy Chitwood jumpshot.
Sunday, November 20, 2011
Cleared - Day 145
Prayers answered! Ellie came home tonight (Sunday) from her 3rd in-patient stay during IM after only 48 hours in the hospital....a full three days ahead of when she was discharged during stay #2. It was her shortest stay yet. We're clear now from chemo for two weeks which means after the short work week, we'll get to have Thanksgiving as a family and get a full week after with little interruption. She came home with a huge grin on her face. I have more I want to share, but too tired tonight. I will have a longer post in a couple days. My little girl is simply amazing.
Never underestimate the fighting power of the human spirit!
For each new morning Thanksgiving Prayer
For each new morning with its light,
For rest and shelter of the night,
For rest and shelter of the night,
For health and food,
For love and friends,
For everything Thy goodness sends.
Ralph Waldo Emerson
Never underestimate the fighting power of the human spirit!
Tuesday, November 15, 2011
IM Midpoint - Day 140
140 days. Really?! On many days its hard to remember what life was like before cancer and yet so many others I can recall all of the things we were doing the days before diagnosis as if it were yesterday. Onward we go. We have reached the half way point of Interim Maintenance (IM) having completed 2 of the 4 hospital stays for dosing of HD Methotrexate. We are in the midst of trying to qualify for stay #3 right now. Ellie has had labs done Monday and Tuesday of this week and not quite gotten there. Her immune system (ANC) has remained in tact for almost all of this phase so far (knock on the biggest piece of wood you can see right now, please) but her blood platelets have fluctuated a bit and are the current sub par level right now holding us back from the next admittance.
The last stay we had was nearly 6 days in-patient and Polly and I probably should have prepared better mentally for a longer stay than we did. Her first stay lasted just a touch over 72 hours and silly us for thinking this time would be no different. In the grand scheme of things I know it is not right to complain about the length of stays. We have to go a lot further to get to the hospital in Mountain View which adds up to alot of driving for Timmy and I on our dinner visits. But we think about our friends who commute from Sacramento for LCPH's cancer treatment of their 1 year old and we (ok, I) probably shouldn't complain. Its tough to just sit in there and wait for her to clear the drug while Polly trys to care for/entertain and then get enough sleep in the process.
If Ellie can meet blood counts on Thursday, she'll be admitted on Friday morning to LPCH for another LP procedure (spinal injection) and then ambulanced over to Mountain View for the HD MTX dosing. We are really hoping to start again on Friday so that she can clear and come home in time for Thanksgiving. I don't need turkey, I don't need football, I just want Ellie home for the holiday weekend.
When she was discharged last week, we had such a good day hanging out as family, going to breakfast, and then running them both ragged at the outside shopping center at Stanford. If it moves/chugs/glows in a store window, Timmy is drawn to it like moth to flame. That coupled with multiple water fountains throughout the plazas - endless entertainment. Oh and THEN, we watch the Cal Train come into the nearby station where both kids know the street crossing barriers come down first and next the train inevitably shows up. Our conversation abounds with what will happen next. Timmy of course is not wanting to move until his predictions of the crossing barriers rising back up come true. We quite possibly have early engineering going on here. Timmy will build it (check that - he will vigorously manage the process) and Ellie will show everyone how to wave at it as it goes by. Garbage trucks, buses, trains...all deserve and receive a wave from El.
Her days home have been, for the most part, ok. Funny what we consider "ok" now a days. She throws up in the morning pretty regularly now 2-3 days post hospital stay. She is able to communicate so much better with how she feels (relative to a few months ago) that we know the minute the nausea has passed because her smile immediately returns and she starts proclaiming it is time to watch "The Elmo". She gets so many bruises that you would think she has just gone 12 rounds in the boxing ring. There are also a lot of little things that seem to pop up which are not immediate causes for concern but you just pray are not symptoms of a bigger problem, such as her current elevated liver function levels due to the HD MTX. We try to follow the doctors advice if our concern should be real or not but still cannot help but think of potential issues down the road (after she's cured) that will come up with her health because of all the chemo she has received. And therein lies the point where you have to reality check yourself back to the "living day by day" philosophy or else being overwhelmed would be a constant. I wish I could say it is that easy. It is not. We get overwhelmed still at times every week, curse cancer to no end, and just try look forward to more days like our Stanford shopping center window shopping water fountain spree.
Thankyou for the continued prayers. Please pray we can get into the hopsital this week by Friday. We are trying to maintain our focus a midst this chaotic schedule. The twins have taken a huge liking to pumpkin pie as of late (thankyou Trader Joes), so the goal right now is to have a huge piece in a week's time with the usual Hey Family turkey day gathering in celebration of making it 3 down and 1 to go.
The last stay we had was nearly 6 days in-patient and Polly and I probably should have prepared better mentally for a longer stay than we did. Her first stay lasted just a touch over 72 hours and silly us for thinking this time would be no different. In the grand scheme of things I know it is not right to complain about the length of stays. We have to go a lot further to get to the hospital in Mountain View which adds up to alot of driving for Timmy and I on our dinner visits. But we think about our friends who commute from Sacramento for LCPH's cancer treatment of their 1 year old and we (ok, I) probably shouldn't complain. Its tough to just sit in there and wait for her to clear the drug while Polly trys to care for/entertain and then get enough sleep in the process.
If Ellie can meet blood counts on Thursday, she'll be admitted on Friday morning to LPCH for another LP procedure (spinal injection) and then ambulanced over to Mountain View for the HD MTX dosing. We are really hoping to start again on Friday so that she can clear and come home in time for Thanksgiving. I don't need turkey, I don't need football, I just want Ellie home for the holiday weekend.
When she was discharged last week, we had such a good day hanging out as family, going to breakfast, and then running them both ragged at the outside shopping center at Stanford. If it moves/chugs/glows in a store window, Timmy is drawn to it like moth to flame. That coupled with multiple water fountains throughout the plazas - endless entertainment. Oh and THEN, we watch the Cal Train come into the nearby station where both kids know the street crossing barriers come down first and next the train inevitably shows up. Our conversation abounds with what will happen next. Timmy of course is not wanting to move until his predictions of the crossing barriers rising back up come true. We quite possibly have early engineering going on here. Timmy will build it (check that - he will vigorously manage the process) and Ellie will show everyone how to wave at it as it goes by. Garbage trucks, buses, trains...all deserve and receive a wave from El.
Her days home have been, for the most part, ok. Funny what we consider "ok" now a days. She throws up in the morning pretty regularly now 2-3 days post hospital stay. She is able to communicate so much better with how she feels (relative to a few months ago) that we know the minute the nausea has passed because her smile immediately returns and she starts proclaiming it is time to watch "The Elmo". She gets so many bruises that you would think she has just gone 12 rounds in the boxing ring. There are also a lot of little things that seem to pop up which are not immediate causes for concern but you just pray are not symptoms of a bigger problem, such as her current elevated liver function levels due to the HD MTX. We try to follow the doctors advice if our concern should be real or not but still cannot help but think of potential issues down the road (after she's cured) that will come up with her health because of all the chemo she has received. And therein lies the point where you have to reality check yourself back to the "living day by day" philosophy or else being overwhelmed would be a constant. I wish I could say it is that easy. It is not. We get overwhelmed still at times every week, curse cancer to no end, and just try look forward to more days like our Stanford shopping center window shopping water fountain spree.
Thankyou for the continued prayers. Please pray we can get into the hopsital this week by Friday. We are trying to maintain our focus a midst this chaotic schedule. The twins have taken a huge liking to pumpkin pie as of late (thankyou Trader Joes), so the goal right now is to have a huge piece in a week's time with the usual Hey Family turkey day gathering in celebration of making it 3 down and 1 to go.
Monday, November 7, 2011
Patience - Day 132
We've been in-patient at El Camino Hospital for 5 days now. Ellie's 2nd of 4 High Dose Methotrextate administrations for Interim Maintenance was completed late Friday night. We then sit and wait for it to clear her system while she is continually hooked up to a hydration IV in her port. The hydration gives her a mixture of water, saline, and dextrose (sugar) to help flush her system and maintain kidney functions as best as possible. She cleared in 48 hours two weeks ago but has been much slower this time around and as of now it isn't guaranteed we will get out tomorrow (Tuesday). We get a new data point about twice a day regarding the drug level in her blood and her creatinine levels from her kidneys (elevated creatinine would mean her kidneys are struggling). While El Camino is definitely the place to be for great care on "expected" in-patient stays, the labs still have to be shuttled up to Stanford for analysis and then shuttled back to us with results. The couriers, as we have gathered, are anything but expeditious with this process. (Funny how it takes me about 50 minutes to drive round trip from Redwood City and yet it takes them a solid 4 hours) At the 24 hour data point, we were at 47% HDMTX and are currently sitting on a solid 0.25 heading into day 5. We need to be below 0.1 to get discharged. Hurry up n' Wait.
Polly has done an incredible job of finding ways to pass the time. The highlight of this stay has been to go down to the 1st floor (cannot miss us en route as we bring our friend the 50 lb IV pole, pump, and assorted liquids with us) and peer in the window of the gift shop where they have the holiday decor up and in full bloom. There is a small automated roller coaster where the cars get dumped off a conveyor belt of sorts and then get flung down the coaster's course. She shrieks with laughter everytime she sees it. After 20 minutes of staring in the window, a visit to the baby grand piano that plays itself is (of course) next. While the music is really good, Ellie's main concern is "Where man playing piano, momma?" Here we get to respond with whatever we desire and perhaps the remarkable thing is that no matter how thorough the response where stories of how the man is invisible yet able to play while standing on his head.....or the man left to get something to eat.....or there is no man, it is a magic piano....it is 100% guaranteed to be followed with her saying back to us (and in unison with Timmy when he is present) - "WHHHHHYYYY?" If I ever see that courier, I am going to ask him how long it took him to get us our results back, listen to his lame excuse, and then have T & E do their "Why" rebuttle in full glory. When the Twins go 2v1, we all have little chance.
I watch Timmy find ways to occupy himself when Ellie is not around and he certainly is not the same cheery guy without her. He has fun, don't get me wrong, but he is starting to get slightly annoyed with her disappearing acts recently and of course he doesn't quite understand. They say twins have a special connection. I am your witness here that this connection not only exists but is quite strong with these two. The first thing he asks about when he wakes up in the morning is "Where's Ellie?" and he wakes up far more often late at night when she isn't around. In the last few weeks, he has shown her much more affection than before with hugs and sharing of his toys if he has tow items and can spare one. When we get down to the parking lot to go home from the hospital, he asks all the time to look up to the window on the 4th floor to wave bye to her. Ellie meanwhile can sit all day and look at pictures of her and T on Polly or I's cell phones. We've recently learned how to send quick videos over our cell phones (yes, slow on that technological account) where both watch each other on the screen and then just look up after its over and say "Again". It's something small in the course of the day, but when we have time to sit for several hours in the hospital by yourself in Polly's case or in mine at home....out of all the terrible things that have come our way in the last four months, these two bonding with each other has been an amazing gift to behold. With cancer in our midst....we consider ourselves very fortunate.
I lost sleep a year and a half ago about what kids may say to Timmy about his eyes when he reaches elementary school. He is so fun loving now and knows no cynicism whatsoever that it will be a tough day when he first realizes the person speaking to him may be saying something that he doesn't like very much. Cancer has taken a lot of the worry away from this forethought. (Ironic, isn't it?) I'm sure we'll still have some battles to fight with playground banter, but the fighting spirit we see developing exponentially with Ellie while she conquers this thing coupled with the simple yearning Timmy has to make sure she isn't too far away provides great comfort that these two already know they have one another to lean on when rough patches pop up. As I see in the high school world daily, positive reinforcement from peers far surpasses anything we adults can do quickly when it comes to building a healthy social environment for the kids involved. They have each other. Even when we are a few cities apart by necessity (certainly not desire), they have each other. T & E have an uncanny way of providing relief enough to help our family patience on nights when we just all want to go home. This is a long, very tough road.
Time to sleep and think up all new ways to craft patient answers around the best smile inducing question in a two year old's vocabulary - WHHHHYYYYYY?
Polly has done an incredible job of finding ways to pass the time. The highlight of this stay has been to go down to the 1st floor (cannot miss us en route as we bring our friend the 50 lb IV pole, pump, and assorted liquids with us) and peer in the window of the gift shop where they have the holiday decor up and in full bloom. There is a small automated roller coaster where the cars get dumped off a conveyor belt of sorts and then get flung down the coaster's course. She shrieks with laughter everytime she sees it. After 20 minutes of staring in the window, a visit to the baby grand piano that plays itself is (of course) next. While the music is really good, Ellie's main concern is "Where man playing piano, momma?" Here we get to respond with whatever we desire and perhaps the remarkable thing is that no matter how thorough the response where stories of how the man is invisible yet able to play while standing on his head.....or the man left to get something to eat.....or there is no man, it is a magic piano....it is 100% guaranteed to be followed with her saying back to us (and in unison with Timmy when he is present) - "WHHHHHYYYY?" If I ever see that courier, I am going to ask him how long it took him to get us our results back, listen to his lame excuse, and then have T & E do their "Why" rebuttle in full glory. When the Twins go 2v1, we all have little chance.
I watch Timmy find ways to occupy himself when Ellie is not around and he certainly is not the same cheery guy without her. He has fun, don't get me wrong, but he is starting to get slightly annoyed with her disappearing acts recently and of course he doesn't quite understand. They say twins have a special connection. I am your witness here that this connection not only exists but is quite strong with these two. The first thing he asks about when he wakes up in the morning is "Where's Ellie?" and he wakes up far more often late at night when she isn't around. In the last few weeks, he has shown her much more affection than before with hugs and sharing of his toys if he has tow items and can spare one. When we get down to the parking lot to go home from the hospital, he asks all the time to look up to the window on the 4th floor to wave bye to her. Ellie meanwhile can sit all day and look at pictures of her and T on Polly or I's cell phones. We've recently learned how to send quick videos over our cell phones (yes, slow on that technological account) where both watch each other on the screen and then just look up after its over and say "Again". It's something small in the course of the day, but when we have time to sit for several hours in the hospital by yourself in Polly's case or in mine at home....out of all the terrible things that have come our way in the last four months, these two bonding with each other has been an amazing gift to behold. With cancer in our midst....we consider ourselves very fortunate.
I lost sleep a year and a half ago about what kids may say to Timmy about his eyes when he reaches elementary school. He is so fun loving now and knows no cynicism whatsoever that it will be a tough day when he first realizes the person speaking to him may be saying something that he doesn't like very much. Cancer has taken a lot of the worry away from this forethought. (Ironic, isn't it?) I'm sure we'll still have some battles to fight with playground banter, but the fighting spirit we see developing exponentially with Ellie while she conquers this thing coupled with the simple yearning Timmy has to make sure she isn't too far away provides great comfort that these two already know they have one another to lean on when rough patches pop up. As I see in the high school world daily, positive reinforcement from peers far surpasses anything we adults can do quickly when it comes to building a healthy social environment for the kids involved. They have each other. Even when we are a few cities apart by necessity (certainly not desire), they have each other. T & E have an uncanny way of providing relief enough to help our family patience on nights when we just all want to go home. This is a long, very tough road.
Time to sleep and think up all new ways to craft patient answers around the best smile inducing question in a two year old's vocabulary - WHHHHYYYYYY?
Thursday, November 3, 2011
Consistency - Day 127
Busy Busy. Interim Maintenance is not quite as intensive with the number of hospital/clinic visits overall, so we have had a relatively normal last 10 days. Normal meaning Polly and I have both been able to work and also try to enjoy some of the little parts of this time of the year. Ellie's blood counts have remained high since her last in patient stay, thankfully, and so as a result Halloween was a full go.
T & E went as Mickey and Minnie Mouse. We were able to go around one of the quieter, little kid friendly neighborhoods nearby. Quieter being key so as to try to stay away from too many germs. They both had a blast and it was a joy to see them get into their first real trick or treating experience. The Candy? Yes, that would be the least of their desires. The super highlight for both was jumping out of the stroller to run up to the front door and ring the "ding dong" (doorbell). We could have ended the night right there and they would've gone home happier than clams. They figured they should take something from the large bowl that every gracious adult who answered lowered down to mouse ears level and put in their bags. That is after all apparently just what you do. And then? Race back to the stroller where Timmy proudly proclaimed "Mama - go NEXT HOUSE" where another ding dong awaited. Priceless times. And even better to feel like nothing was wrong for a night.
Ellie went in for labs this morning to qualify her for her #2 of 4 in-patient stays this coming weekend for this phase of treatment. On Friday, we'll head back down to El Camino Hospital in Mtn View for the 4 day stay. Knowing the drill now will likely make the weekend go a little faster than last time. Having her immune system stay above 1000 for over two weeks now has been a huge blessing. It allowed us all to do flu shots and really get good n' ready for the cold season. She is losing a little more of what's left of her hair (thankyou, Vincristine) but still asks on occasion in the morning while I am getting ready if I could comb it for her like I do mine. I sure hope her innocence, in what seems to be the purest form, lasts until we can call her "cured". It fuels the rest of my day.
The soccer season has now started for me so there isn't as much time as I like to write. It still remains a very therapeutic outlet and keeps my eyes wide open with perspective despite the daily grind. We're fortunate to have some quieter weeks right now. Any chance you can to refuel and renew, you do it. Ellie has been doing pretty good and we just hope that continues throughout this phase. Getting through the upcoming weekend in-patient is our next obstacle. We'll be ready for it.
Yesterday, the message in the All Saints Day school mass centered around the idea that the Saints were folks who became who they were because they were consistent with their path. They didn't waver. I think its interesting that either I am listening a little more intently on some days or this particular Homily just seemed to coincide at the right moment to outside thoughts circling the brain which I can pair together perfectly. I heard a very reassuring and resounding - Stay the Course. Now, I'm not going to go mow some corn down and build a ball field, but you HAVE to hear this type of message from time to time. A church service, a song on the car radio, a quote, a dialogue with a student you'd never expect to have, a call from a family member or friend. I'm listening and I'm hearing many great things from many corners that help us consistently commit and do what we need to do. Throw in a night of "ding dongs" and we've got some laughter along the way to smooth some of the rough edges out.
I hope you will pray for another little friend or ours at LPCH tonight, 5 year old Bailey. She is one of these wonderful children who know not what is happening to them but only how to move forward with their days the best way they know how. We are praying for her recovery, for her parent's strength, and for some smiles to show themselves soon. The consistency in a kid's smile can speak volumes without physically saying a word. It is familiarity in a simple form which in turn provides comfort. If you listen, they in their own way are telling us adults that everything is going to be ok.
T & E went as Mickey and Minnie Mouse. We were able to go around one of the quieter, little kid friendly neighborhoods nearby. Quieter being key so as to try to stay away from too many germs. They both had a blast and it was a joy to see them get into their first real trick or treating experience. The Candy? Yes, that would be the least of their desires. The super highlight for both was jumping out of the stroller to run up to the front door and ring the "ding dong" (doorbell). We could have ended the night right there and they would've gone home happier than clams. They figured they should take something from the large bowl that every gracious adult who answered lowered down to mouse ears level and put in their bags. That is after all apparently just what you do. And then? Race back to the stroller where Timmy proudly proclaimed "Mama - go NEXT HOUSE" where another ding dong awaited. Priceless times. And even better to feel like nothing was wrong for a night.
Ellie went in for labs this morning to qualify her for her #2 of 4 in-patient stays this coming weekend for this phase of treatment. On Friday, we'll head back down to El Camino Hospital in Mtn View for the 4 day stay. Knowing the drill now will likely make the weekend go a little faster than last time. Having her immune system stay above 1000 for over two weeks now has been a huge blessing. It allowed us all to do flu shots and really get good n' ready for the cold season. She is losing a little more of what's left of her hair (thankyou, Vincristine) but still asks on occasion in the morning while I am getting ready if I could comb it for her like I do mine. I sure hope her innocence, in what seems to be the purest form, lasts until we can call her "cured". It fuels the rest of my day.
The soccer season has now started for me so there isn't as much time as I like to write. It still remains a very therapeutic outlet and keeps my eyes wide open with perspective despite the daily grind. We're fortunate to have some quieter weeks right now. Any chance you can to refuel and renew, you do it. Ellie has been doing pretty good and we just hope that continues throughout this phase. Getting through the upcoming weekend in-patient is our next obstacle. We'll be ready for it.
Yesterday, the message in the All Saints Day school mass centered around the idea that the Saints were folks who became who they were because they were consistent with their path. They didn't waver. I think its interesting that either I am listening a little more intently on some days or this particular Homily just seemed to coincide at the right moment to outside thoughts circling the brain which I can pair together perfectly. I heard a very reassuring and resounding - Stay the Course. Now, I'm not going to go mow some corn down and build a ball field, but you HAVE to hear this type of message from time to time. A church service, a song on the car radio, a quote, a dialogue with a student you'd never expect to have, a call from a family member or friend. I'm listening and I'm hearing many great things from many corners that help us consistently commit and do what we need to do. Throw in a night of "ding dongs" and we've got some laughter along the way to smooth some of the rough edges out.
I hope you will pray for another little friend or ours at LPCH tonight, 5 year old Bailey. She is one of these wonderful children who know not what is happening to them but only how to move forward with their days the best way they know how. We are praying for her recovery, for her parent's strength, and for some smiles to show themselves soon. The consistency in a kid's smile can speak volumes without physically saying a word. It is familiarity in a simple form which in turn provides comfort. If you listen, they in their own way are telling us adults that everything is going to be ok.
Wednesday, October 26, 2011
Opportunity - Day 120
I think acronyms in the medical field were created either to make everyone involved sound really smart or to thoroughly scare patients into thinking those letters must mean something so intense, we shouldn't question them. :) So, this weekend we were in-patient for three and a half days for the HD-MTX and VIN injections at the PEC unit of LPCH with results fully monitored via CHEM-10 and CBC analysis for purpose of fighting (no, annihilating) Pre-B cell ALL so that it is totally and completely F.U.B.A.R. Ellie was discharged on Monday morning with a big smile, so draw your own conclusions on who won that particular battle.
We were fortunate in may ways to get this in-patient stay at El Camino hospital in Mountain View. They only allow a max of 8 oncology patients there at a time (this past weekend, I believe there was 2-3 less than that even), so the place is just overall about 10 notches lower on the craziness scale. It is very serene and when the on-call doc shows up for rounds, he isn't followed by 5 med students/residents. He actually sat down with us for almost 15 minutes on both Saturday and Sunday. I'm certainly not complaining about the hustle and bustle of LPCH - I mean, if that produces a cure, I'm good with running around with no head - BUT, with this being an expected multiple day stay, to be treated with such care is very reassuring.
HD-MTX is High Dose Methotrexate. Up until this point she has only received a dose of this drug 10 times weaker in her lumbar punctures that go straight into her spinal cord. For four times during Interim Maintenance, she will get the High Dose version over a 24 hour period through her port. It is potentially toxic to the liver and kidneys. The method is to basically hydrate her like crazy 6 hours prior to dosing and then throughout the entire stay so her body has as much help to pass it through as quickly as possible. For our first go around with this, she ended up being about 18 hours ahead of schedule with recovery following the final drop of drug and thus got discharged early. That's my girl.
We are still in a nice period with blood counts. Her ANC (immune system) rating today was 3500, another all time high since diagnosis. We expect the chemo, as usual, will start to kick in with side effects in the next few days. We had a queasy stomach this morning (though it was short lived) and know her counts will begin to fall soon. If we make counts a week from today, our next in patient stay will begin on Nov 4th. The non-neutropenic days are an opportunity to do some normal things and we take full advantage. We've had two meals out at one of favorite small restaurants in Portola Valley this week and Polly was able to take both kids for a horse ride late last week prior to heading to the hospital. You never know how long until these types of days stick around or will potentially be gone for.
Our first hope each day of course is that she is comfortable and content. Obviously that goes a long way to sustain as normal of an atmosphere as we try to provide. But the second hope right behind is that she eats. The chemo is so relentless when it comes to destroying appetite and she loses weight pretty quick sometimes. We have to find moments where our eye catches her starting to nibble consistently on something and then pounce in there with a ton more of whatever IT is because IT does not show itself very often. A couple weeks ago it was Campbell chicken noodle soup. Last Friday, it was the grilled duck breast Polly's dad ordered for dinner and offered a bite which then turned into, "Ok Papa, I'll eat half" You'll think I am joking but we're then trying to slap some butter on each bite before she sees it. It is an interesting quest each day to say the least and I see at least a small part of her being annoyed 25 years from now when she hears the stories of what she was offered but turned down in terms of not-even-close-to-Lean Cuisine. Staying hydrated and well fed goes a long way to making things a little bit easier, so we look for and seize every moment we can.
My high school soccer season at Serra begins next week. In our pre-season meetings, I've stressed a great deal the idea of Opportunity. They come and go sometimes without paying enough attention to what is actually being offered nor the knowledge of what you are capable of if you see the opportunity through to the end. Experiences are greatly enriched by fulfilling that opportunity in every aspect...including those aspects much more demanding of personal sacrifice. I certainly cannot say I embrace every necessary sacrifice with open arms the minute they present themselves but I recognize their significance once I can wipe the sleep from my eyes. Opportunities to sit and watch the twins throw their milk back in the morning while jockeying for position to select the next video on the "mini pay-pay" (ipod touch) or how good my food tasted the last three dinners we've been able to sit down as a family or the incredible words I hear on the phone while at work now that I can actually have a conversation with either of them on the other end. Polly and I have had the opportunity to see both our parents in the last week time to spend with their grand kids including a bounce house session with Polly's mom. There are also the opportunities to help Ellie stand back up after she gets sick to her stomach (which she now officially hates with a passion) and to change her diaper immediately when she gives us that "look" because we know now how much that alone can ease some pain....or the opportunity Polly takes everytime to use amazing care when prepping Ellie to have her port accessed. It's making this journey very tolerable every single day.
Herb Brooks, coach of the 1980 USA Hockey Team that won gold in Lake Placid in what is well known as the "Miracle on Ice" made a tremendous statement in the hours before he slayed Goliath - "Great Moments come from Great Opportunity". If you look at just one day, and one day only....the opportunities have been there and we are so forever thankful to be witnesses. So someone PLEASE stop me and send me back if I walk right past one. We're focusing all of our energies on making sure we see them all.
If you are curious, here is Hollywood's version of Herb Brooks' words: Click Here
Opportunity can lead to Miracles. Game ON, cancer.
We were fortunate in may ways to get this in-patient stay at El Camino hospital in Mountain View. They only allow a max of 8 oncology patients there at a time (this past weekend, I believe there was 2-3 less than that even), so the place is just overall about 10 notches lower on the craziness scale. It is very serene and when the on-call doc shows up for rounds, he isn't followed by 5 med students/residents. He actually sat down with us for almost 15 minutes on both Saturday and Sunday. I'm certainly not complaining about the hustle and bustle of LPCH - I mean, if that produces a cure, I'm good with running around with no head - BUT, with this being an expected multiple day stay, to be treated with such care is very reassuring.
HD-MTX is High Dose Methotrexate. Up until this point she has only received a dose of this drug 10 times weaker in her lumbar punctures that go straight into her spinal cord. For four times during Interim Maintenance, she will get the High Dose version over a 24 hour period through her port. It is potentially toxic to the liver and kidneys. The method is to basically hydrate her like crazy 6 hours prior to dosing and then throughout the entire stay so her body has as much help to pass it through as quickly as possible. For our first go around with this, she ended up being about 18 hours ahead of schedule with recovery following the final drop of drug and thus got discharged early. That's my girl.
We are still in a nice period with blood counts. Her ANC (immune system) rating today was 3500, another all time high since diagnosis. We expect the chemo, as usual, will start to kick in with side effects in the next few days. We had a queasy stomach this morning (though it was short lived) and know her counts will begin to fall soon. If we make counts a week from today, our next in patient stay will begin on Nov 4th. The non-neutropenic days are an opportunity to do some normal things and we take full advantage. We've had two meals out at one of favorite small restaurants in Portola Valley this week and Polly was able to take both kids for a horse ride late last week prior to heading to the hospital. You never know how long until these types of days stick around or will potentially be gone for.
Our first hope each day of course is that she is comfortable and content. Obviously that goes a long way to sustain as normal of an atmosphere as we try to provide. But the second hope right behind is that she eats. The chemo is so relentless when it comes to destroying appetite and she loses weight pretty quick sometimes. We have to find moments where our eye catches her starting to nibble consistently on something and then pounce in there with a ton more of whatever IT is because IT does not show itself very often. A couple weeks ago it was Campbell chicken noodle soup. Last Friday, it was the grilled duck breast Polly's dad ordered for dinner and offered a bite which then turned into, "Ok Papa, I'll eat half" You'll think I am joking but we're then trying to slap some butter on each bite before she sees it. It is an interesting quest each day to say the least and I see at least a small part of her being annoyed 25 years from now when she hears the stories of what she was offered but turned down in terms of not-even-close-to-Lean Cuisine. Staying hydrated and well fed goes a long way to making things a little bit easier, so we look for and seize every moment we can.
My high school soccer season at Serra begins next week. In our pre-season meetings, I've stressed a great deal the idea of Opportunity. They come and go sometimes without paying enough attention to what is actually being offered nor the knowledge of what you are capable of if you see the opportunity through to the end. Experiences are greatly enriched by fulfilling that opportunity in every aspect...including those aspects much more demanding of personal sacrifice. I certainly cannot say I embrace every necessary sacrifice with open arms the minute they present themselves but I recognize their significance once I can wipe the sleep from my eyes. Opportunities to sit and watch the twins throw their milk back in the morning while jockeying for position to select the next video on the "mini pay-pay" (ipod touch) or how good my food tasted the last three dinners we've been able to sit down as a family or the incredible words I hear on the phone while at work now that I can actually have a conversation with either of them on the other end. Polly and I have had the opportunity to see both our parents in the last week time to spend with their grand kids including a bounce house session with Polly's mom. There are also the opportunities to help Ellie stand back up after she gets sick to her stomach (which she now officially hates with a passion) and to change her diaper immediately when she gives us that "look" because we know now how much that alone can ease some pain....or the opportunity Polly takes everytime to use amazing care when prepping Ellie to have her port accessed. It's making this journey very tolerable every single day.
Herb Brooks, coach of the 1980 USA Hockey Team that won gold in Lake Placid in what is well known as the "Miracle on Ice" made a tremendous statement in the hours before he slayed Goliath - "Great Moments come from Great Opportunity". If you look at just one day, and one day only....the opportunities have been there and we are so forever thankful to be witnesses. So someone PLEASE stop me and send me back if I walk right past one. We're focusing all of our energies on making sure we see them all.
If you are curious, here is Hollywood's version of Herb Brooks' words: Click Here
Opportunity can lead to Miracles. Game ON, cancer.
Wednesday, October 19, 2011
Qualified - Day 113
Great Day. Ellie went in for her labs this morning and put up her highest numbers in 2 months for White blood cells (2.3K), Platelets (460K), and the all important immune system Neutrophil count (ANC = 1460). All of which qualifies her to move on to the next phase of treatment to begin on Friday. Prayers for healing and recovery for this day have been answered. We are humbled and thankful.
Tonight we danced in the proverbial rain....with a little goofy jig to the "Parenthood" (NBC drama) theme song by Bob Dylan (great show!). Great to relax tonight and are fortunate enough to get another whole day before heading to the hospital on Friday to be admitted for the start of Interim Maintenance. Suddenly Thursdays aren't so bad. :) Quite ironic that we're actually looking forward to going in-patient for a few days (relatively). But that is still a day away and tomorrow it is time to just be.
Tonight we danced in the proverbial rain....with a little goofy jig to the "Parenthood" (NBC drama) theme song by Bob Dylan (great show!). Great to relax tonight and are fortunate enough to get another whole day before heading to the hospital on Friday to be admitted for the start of Interim Maintenance. Suddenly Thursdays aren't so bad. :) Quite ironic that we're actually looking forward to going in-patient for a few days (relatively). But that is still a day away and tomorrow it is time to just be.
If I have the gift of prophecy and can fathom all mysteries
and all knowledge,
and if I have a faith that can move mountains,
but have not love,
I am nothing
1st Corinthians 13:2
Love for Ellie indeed.
Tuesday, October 18, 2011
Rejuvenated - Day 111
In the coaching circles there is a saying for teams who get off to good starts that the season does not officially begin until you lose your first game. When adversity strikes, the strength of a team's character is put to the test and it is impossible to come out on the other side unscathed and unchanged. Finding ways to motivate, inject strategy, and walk the fine line of pushing the team to its limits while also not exhausting them nor failing to show the proper amount of support is an ever evolving art form that takes time and knows no fear of failure. I love the challenge and always embrace the potential of what can be learned from the situation at hand. The reward for persevering through the adversity, taking the steps to combat the symptoms, and finally stepping beyond to higher ground when the time comes is far greater of an accomplishment than any final score in your favor will ever be. Before that step forward can be taken, I often find a moment of magic occurs I never saw coming or at least questioned (during times where we're not so strong) if it were ever possible. As a guy that stands on the sidelines a lot with no direct participation on the field or in this cancer battle, I can tell you these magical moments have the ability to sustain our smiles and rejuvenate the soul.
I would say it was about Thursday evening of this past week where our little girl in every way shape and form of how she was prior to her getting sick showed up again and has been running gleefully through the house all weekend. She is back to singing and twirling. Her appetite has returned in full force and she has for the most part slept 10-11 hours straight each of the last four nights. Her blood counts have obviously come up and we'll get confirmation (we hope) of that on Wednesday with her next scheduled labs at the clinic. The color has returned to her face and of course her wonderful smile has been dazzling everyone. My parents were fortunate enough to have planned a trip up this past weekend and timed it perfectly with her upswing of energy. So, they were able to enjoy the twins in full activity all of Saturday and Sunday.
We went as a group over to Palo Alto High School on Saturday night for the annual LLS "Light the Night" fundraiser and 2-mile remembrance walk throughout the neighborhood streets. Prior to the walk, there was food and music as well as a heart warming ceremony to honor those we've lost to blood cancer in this community. This is the first real LLS event we have been to and were immediately taken with the atmosphere. Due to Ellie's schedule of rest and still slightly neutropenic body, we could not stay for the walk portion of the night, but I have a feeling this is only the first of many LLS events we will be going to down the road. Polly and I were able to register as Bone Marrow donors, something we have been talking about doing for quite some time now. The kind man who was volunteering in front of the donor registration tent was cured of Chronic Lymphoblastic Leukemia (the adult version of what Ellie has more or less with a much lower success rate) a few years ago by way of a bone marrow transplant. You could tell the rejuvenation in his voice was something he'll never tire of expressing. He is living proof about why these types of events are so important. We were very lucky to have come across this event and promise to go back.
If Ellie makes counts on Wednesday (which we expect she will), Interim Maintenance will begin on Friday with a Lumbar puncture to put methotrextae into her spine (Hopefully you recall she has had 6 of these done already, including 4 in the Consolidation phase we just finished). After that, she'll be admitted to the hospital for 3-4 days to get the high dose version of Methotrexate intravenously through her port. This will be the first time she has had this form of the drug and observation round the clock is required to monitor her liver and kidney functions which could be affected by it. She will also start taking the nightly oral dose of Mercaptopurine (6MP) which will be daily for the entire 8 weeks of IM. Needless to say, her blood counts will fall again quite rapidly throughout next week. So, the amount of energy she has will likely diminish and it could be another 8 weeks until we get days like this again.
But ya know....having a weekend like this has stunned us with her ability to rally, rebound, and renew. Having finally shed the Vincristine side effects and found a way to patiently wait for her counts to rise, she has survived her Consolidation phase and allowed us all time to take some deep breaths and rest up ahead of the next phase. We have savored the time in the last four days simply because we are distinctly aware that we know not when days like these will come exactly and that we have all been able to persevere through some very tough times thus far. It is fuel for the human spirit and makes you feel like you are not just playing a defensive game dodging bullets, so to speak. Rather, I feel like standing up tonight ready for the next round of the match and when that bell finally rings to get going, I'm climbing to the top rope and droppin' a Macho Man Savage flying elbow before cancer's corner can even move his stool out of the way.
I want to say thank you to the many folks who continue to bring us food for dinner on weekday nights. I want to say a special thanks to Maggie who has never met Ellie but honored her with a huge orange ribbon on her chest this past weekend while she ran the SF Nike Women's 1/2 Marathon. I want to say thank you to my buddy Dave who put a sponsorship together in Ellie's honor at his company golf tournament and presented us with the Tee-sign dedicated to her fight. To my friend Katie and the Sitting Tree organization that held such an incredible event in Ellie's honor in North Hollywood a couple weeks ago. I receive both anonymous cards and cards written by folks who are friends of friends of friends (who I've never met) offering support and prayers on a weekly basis. All of these things lift us up and make it easy to keep going with each providing a little moment of unexpected magic that puts us one step closer to a cure.
I want to tell you about a weekend in my life that I will never forget anytime soon which occurred during my freshman year at UCLA when I was fortunate enough to travel with the pep-band up to Boise, Idaho for a set of first round NCAA tournament games in 1995. The Bruins went into the tournament ranked number 1 in the country, had everything going for them, and presumably this weekend was supposed to be "easy". After a blowout win in the first game on Friday, several friends and I decided to make a 3 hour trek east for the day on Saturday to go skiing at Sun Valley on our day off in between games. I skied growing up but never outside of California (mostly Southern) so this sort of wilderness was new to me. The day was very stormy and well below freezing for most hours with snow flurries. We decided to head up mid day to the top which was about a 10 minute lift ride from the base. As we were ascending, the clouds became ominously thick and the wind picked up to the point where all of the lift chairs were swaying significantly. When we finally got to the top, the lift operator said the top of the mountain was now closed and we should make our way immediately to the bottom. The wind was still howling and the snow started falling fast and furious. As we left the lift, I suddenly could not see which way was up, down, left or right. My first ever White-Out. Long story short, had it not been for about 4 sign posts that were only visible because we started guessing which way to head (after running into the snowbank a few times)....and a snow mobile rescuer who found us about 30 minutes later, I'm not sure I would be here today. It was a quiet bus ride back to Boise to say the least.
The next day UCLA faced off against Missouri in the second game. We had seats right behind the basket as was custom for the band at tourney games. Still smarting from the prior day's fiasco, I watched them play a horrendous first half and then simply look like they had come up against an opponent that had the ability to deliver the season ending punch. All that work over 30+ games, all the momentum built up, and it was about to be done on a weekend when I was nearly done. The situation in sporting terms represented adversity at its finest - almost no time left and down on the scoreboard by a point. Life can be cruel to people who have worked very hard to get to where they want to be. Then the magic happened.
A last second shot went in via a "Baby Hook" from a guy, ironically, I went to high school with 3 years prior and was always doubted because of how small he was. Afterwards, the court was stormed, we rejoiced like little kids, and the slow motion I experienced of watching that ball fall through the cylinder from my seat behind the hoop helped put a building block up in my life. I know I am just talking about a game here, but the turnaround of emotion, the ability to rejuvenate the dream, and the appreciation of where I've come from and what I have to live for to that point was all wrapped into that shot on that particular weekend of my young (and naive) life following a big escape the day prior. No matter the odds, we savor every moment we can in the present and never stop working for a better tomorrow. Magic can happen at any moment. The sacrifice needed can be overwhelming but that absolutely pales in comparison to the reward seeing Ellie's renewed smile come out brighter than ever on the other side. Bring on the next challenge, we're rested and ready to go.
P.S. If you'd like to see the famed baby hook shot - Click HERE
Wednesday, October 12, 2011
Waiting - Day 106
Hurry up n' wait. A very difficult thing to stomach sometimes when all of us are so ready just to "will" this thing into a better situation every single time Ellie gets her blood checked. I go through my day with various school activities and student interactions where progress in some way, shape, or form is always the end goal. Extended patience is derived from the learned experiences that progress will ultimately show itself over the long haul in most cases. Cancer is such a different, unique, and fairly tormenting beast altogether. Every patient responds slightly different and all we can get are expected trends but not absolute ideas of what tomorrow holds. So, its tough to come home to just "hurry up n' wait" when progress is slow, not guaranteed, and sometimes puzzling to all involved (doctors included). It is very unsettling to come home after a long day and not be able to feel that next step. The LLS message boards have been a good outlet for information to know many others have experienced some of the individual symptoms (like huge 2 yr old irritability) we've had at different times. At least if we have to wait, we can do it together virtually with others. That helps a lot.
Ellie's 2am wakeups subsided after Friday and she has turned a small corner in terms of the constant irritation she felt all of last week. Her smile and eagerness to participate returned over the weekend where she was able to laugh. If you don't know what the healing power of laughter can do and at what magnitude....then I suggest you meet a toddler with cancer. It's heavenly, innocent, and more powerful than anything money can buy. She has had smaller but still significant meltdowns though even through today, including a return of a 2am fit last night. We're trying hard to decipher what's causing them because very little can be done to console her for about 20 minutes. It seems this bout was a night terror (which I guess can happen with normal kids this age). Her energy always seemingly parallels her blood counts and we thought she had been moving in the right direction since the weekend because she was more active. Today's bloodwork was a bit of a mixed bag. She did not qualify for IM to start on Friday. It has now been about a month since her last injection of any chemo drugs that are immunosuppressant which is very worrisome because we learned from the doc the cancer can potentially come back without showing evidence in the bloodwork. (I feel like screaming sometimes - could we please get a book, Doc, on all the things that could "potentially" occur?!!!?!) I know there is now way to completely anticipate everything. Doesn't mean I have to like it.
I don't want to sound too down here though because the plus side of today was promising despite not getting the green light to get treatment going again. Her blood work showed normal platelet levels of 300+ and a 70% Monocyte count (Monocytes are the baby building blocks to new healthy white blood cells), so the signs are starting to show, as they have in the past recovery periods, that her body is starting to regenerate. This eases any thought of the cancer returning because the signs of regeneration are always positive in nature even if it took a longer period of time to do so. We will go back on Friday for more blood work to hopefully see that immune system rating climb above the magic 0.75 mark (she currently is still at 0.1). If we qualify, her IM first hospitalization will begin on Monday.
I also need to mention that the doctor in the clinic today happened to be one of the most senior docs the Bass center has at LPCH and he allowed me to call him directly this afternoon to ask more questions since I was at school when Polly took Ellie in for labs. To get that sort of instant connection for the purpose of discussing a parent's concerns is invaluable. I am very thankful for that. Doctors cannot control a patient's recovery time from chemo but they can put up a wall of support through calming reassurance and help us persevere through a difficult waiting period. On Friday we'll know more and for now, nothing really else matters....so why not just make the best of Thursday (tomorrow) instead of worrying. Funny, I have to type that for it really to have to settle into my thoughts as the right course of action tomorrow. I think that is one of the biggest reasons why this blog has been useful.
We are all moving in some sort of direction. I'd like to think we do it because we hope to make tomorrow more fruitful for our families and leave a mark with those projects we care so much about. It's not the burden of work so much as it is the idea of moving forward with sometimes painful sacrifices now. I believe that whole heartedly. Often the drag of "waiting-to-get-there" masks the truth of what we're really supposed to see.....and that is everything we encounter along the way before the final destination is reached (or even in sight for that matter). There is a bigger picture, of course. But right now, she sleeps soundly in her bed and is likely to get to go to the Pumpkin Patch tomorrow with her mom and brother. Thanks to the doctor today and of course the unending support and love Polly gives to me, that's enough to step down a bit, wait patiently for Friday to come, and ENJOY every second of laughter in whatever spurts I am lucky to see it in tomorrow.
Friday, October 7, 2011
Rough Week - Day 101
After I posted on Tuesday, things started to go down hill this week. Ellie woke up at about 2am Wednesday morning very upset and in pain. After about 3 hours of trying to calm her down, the three of us got about 90 min of sleep before it was time to get the day going again. She has had bouts of persistent irritability before, but we were surprised when it went beyond just a small portion of one day. Throughout the day she'll try eating or playing with something small and in the process of the activity, she'll get frustrated when something gets dropped, doesn't fit together, or just doesn't go the way she wants it to and start crying. We sprint back and forth in the house trying to get her the things she thinks she wants but to no avail and we simply have to wait it out. She wimpered for most of Wednesday and Thursday. As a result, Polly and I are crawling into the weekend.
The culprit here seems to be the drug Vincristine which is given at Week 7 and Week 8 at the end of Consolidation. We've had it before in weeks 3 and 4 and also during Induction (initial month of treatment) but the effects rarely lingered more than a day. Thus, another harsh lesson has been learned - the effects of chemotherapy are cumulative and her body is taking longer to recover because the amount of drugs she has received has increased dramatically over the last 8 weeks. I had figured since the PEG shots in Week 7 and Vincristine a week ago were non-immunosuppressant, her counts would rise nicely this week. I need to stop making predictions. She went to LPCH on Wednesday for her blood work that would hopefully qualify her to start Interim Maintenance today and it wasn't even close. Her White Blood Cell count is down to 0.2 (lowest it has ever been), she needed a platelet transfusion because she was below the minimum of 20 on that front and could not even calculate an ANC value due to so few White Blood Cells (we report this as <0.1 neutrophyl count). Just so you know, her platelets need to be 75 and her ANC needs to be at 0.750 for IM to begin. Once we knew those numbers, her fatigue is justified.
When I was younger, I remember having to take iodine supplements for some random flu bug I had. It was given in liquid form and had to be diluted in orange juice to be edible. It was the worst tasting thing I think Ive ever had....and as a result I remember it to this day. I never understood why enduring that was necessary. I think El is wondering the same thing about Vincristine. Besides hair loss and nausea, this drug causes Neuropathy (nerves from her brain/spine that are causing pain in her legs, arms, and joints). Her arms shake sometimes as a result and any sudden movement with her feet causes pain. I want to stay upbeat because it is who I am most of the time, but her crying from this whole ordeal drains like nothing else ever has. I'm getting upset just typing about all this. WHY WHY WHY?????
When her misery hit the 48+ hr mark yesterday, we finally asked if we could come in and see our oncologist. Best thing we could have done. Really. Polly had to wait a while to see him but he provided some reassurance that was simple yet very needed at that point. More than the average number of kids on the same protocol experience delays in chemo heading into IM and low LOW blood counts right after Consolidation. We managed to sleep from 10pm til about 5am last night with no 2am wakeup like that last two nights. It was better but I'm still running close to empty this evening and will be finding my pillow as soon as I can shut this computer off. We have found one calming item that has worked to subdue her for about 30 minutes at a time this whole week - Campbell's chicken soup. It is the new Stoneybrook Yo Baby Yogurt for us if you will (at least for now). Polly bought a case this afternoon. I came home from a very long week at school this afternoon to a slightly happier daughter. She managed about 2 hours of smiles before she melted again around 5:30. The doc said the Vincristine effects could last as long as a couple of weeks (God, I hope not).
We go in next Wednesday for another try at qualifying blood work for IM to start the following Friday (Oct 14th). If that occurs, she'll go into the hospital for a couple of days for the high does methotrexate and a lumbar puncture of intrathecal methotrextate into her spine. So, we wait for that magical turnaround in blood counts. It occured just after Induction and happened almost exponentially in about 2 days. Here, it needs to happen in the next 10-14 days or else the worrying will go up on all sides around here. We're doing our best to stay patient. Timmy's ever expanding vocabulary provides some comic relief. He now responds to every answer we give to his questions, "Whhhhhyyyy?". What's even better is that I can give him a reason back that has nothing to do with anything and he accepts it contently with an "Oh".
Timmy: Daddy, Timmy play with (neighbor) outsiiiide?
Daddy: No, buddy, its time for dinner soon and besides its been raining so its too cold right now.
Timmy: Whhhhyyyyy?
Daddy: Well, because the Monkeys in the living room are playing Monopoly
Timmy: Oh
Ok, I don't give him answers like that all the time, but on occasion we try to keep our sanity anyway we can :)
I guess we consider ourselves quite lucky to have had the September that we did which went by almost trouble free. Ever since her last hospital stay ended on Sept 1st, she had been skating through treatment. I feel like just when we get a handle on things, the reality hook decides to come out and dammit if it just doesn't ever seem to play fair. Polly can barely work now because of the multiple days at LPCH and Ellie's needs increasing during IM with hospital stays involved. She has worked so hard at her own business and I wish I could make this better for her. We maintain the day by day outlook and try not to focus on anything other than this next week. Whatever time we can spend in other arenas outside of the twins - great. What time we can't spend....I try not to worry about very much (is it really worth it to worry at all?!).
I'm going to go back to "Rudy" again if you don't mind. When he is seeking admission in his last window of opportunity to Notre Dame (prior to the start of his junior year), he sits alone in church pew praying the night before admission letters come out. Father Cavanaugh comes walking through and sits in the row right in front of him for a minute. He sees Rudy looking for answers and offers a harsh reality, "Son, in 35 years of religious study I have come up with only two hard incontrovertible facts: There is a God and I am not him". He makes mention though before he leaves of something I have thought about this week, "Rudy, the prayers we say are something we do in our time....but the answers come in God's time." With no rational explanation for week's like this, I am trying my best to find patience in that exact sentiment.
Please pray that Ellie's smile returns this weekend and that we get back to her treatments next Friday. I want so badly to tell her all about the Monkey Monopoly games too.
Tuesday, October 4, 2011
Chemo 101 - Day 98
Knowledge is power, right? The more happenings I can expect to occur vs being shocked by their arrival, the better. Polly and I have learned that much of what we want to know ourselves (sometimes in huge volumes) about the cancer treatment won't necessarily change how she is being cared for, but.....and I say BUT, there are times when advocating for Ellie while at LPCH is an absolute must. The doctors and nurses, as good as they are and as incredible as their work is, do cancer all day every day for hundreds of patients. From my perspective, and I apologize for thinking like this sometimes....I am a little jealous they get to go home at night to their healthy kids/family and forget about this world for a while. It is understandable that within the daily grind of their normal work day they on occasion can become a little numb to the emotional side of our plight, they can forget a logistical detail, or worse....give Polly or I the "oh, yeah THAT - happens a lot - no biggie" line when we firmly believe it is a big freaking deal. BUT, on the parent side of things, this sometimes drives us bonkers. Polly and I do not want it to be lost that her life is at stake and we do not always have it together during various "happenings" to be the cheeriest, most supportive people. Everyone is human here and that is not lost on me. So, the more we can learn and know about this disease, the more we can advocate and avoid surprises. Most of all, knowledge helps bring a little more peace of mind. And honestly, in a day to day atmosphere, you can NEVER get too much of that.
Chemotherapy drugs are tailored to specific types of cancers. The goal is simple - attack the cancer cells, keep them from reproducing (via meiosis), and pave the way for a clean slate where new cells can grow and flourish. As I alluded to in my last post, past treatments for leukemia used to hit the cancer hard with only a couple drugs for longer periods of time. They found that the Leukemia became resistant to those drugs in effect learning how to fight back and make the drug ineffective. Presently, the chemotherapy "cocktail" given to patients over the course of multiple years effectively sucker punches the cancer and doesn't allow it to gets its bearings to stand back up because its being bombarded from so many different angles. In order to do that scientists and doctors had to figure out how to hammer the various phases of cell creation with specifically targeted drugs (You wouldn't send the Army in for a war being fought several hundred feet deep in the ocean, now would you?!). Here is the basic arsenal of the past few months with lots of help from chemocare.com:
Chemotherapy drugs are tailored to specific types of cancers. The goal is simple - attack the cancer cells, keep them from reproducing (via meiosis), and pave the way for a clean slate where new cells can grow and flourish. As I alluded to in my last post, past treatments for leukemia used to hit the cancer hard with only a couple drugs for longer periods of time. They found that the Leukemia became resistant to those drugs in effect learning how to fight back and make the drug ineffective. Presently, the chemotherapy "cocktail" given to patients over the course of multiple years effectively sucker punches the cancer and doesn't allow it to gets its bearings to stand back up because its being bombarded from so many different angles. In order to do that scientists and doctors had to figure out how to hammer the various phases of cell creation with specifically targeted drugs (You wouldn't send the Army in for a war being fought several hundred feet deep in the ocean, now would you?!). Here is the basic arsenal of the past few months with lots of help from chemocare.com:
Mercaptopurine (6MP) - Mercaptopurine belongs to a group of drugs known as antimetabolites. It resembles a normal cell nutrient needed by cancer cells to grow. The cancer cells take up mercaptopurine which then interferes with their growth. We give this orally to her nightly for periods of 2 weeks at a time during Consolidation. It will be given every night for 8 weeks in IM.
Vincristine – Antimicrobial agents (such as Vincristine), inhibit the microtubule structures within the cell. Microtubules are part of the cell’s apparatus for dividing and replicating itself. Inhibition of these structure ultimately results in cell death. Chemotherapy with Vincristine is most effective at killing cells that are rapidly dividing. Unfortunately, Vincristine does not know the difference between normal and cancerous cells and thus both are killed at the same time. “Normal” cells will ultimately grow back and be healthy with a small cost of side effects. **Jeff's Add-on - This drug is awful. It causes Ellie's limbs to tingle, joint pain, hair loss, and just overall irritability. Our worries with Vincristine were elevated just today because she was so unhappy that she cried on/off for about 4 hours straight. Have I mentioned I hate cancer?
Peg-L-Asparagenaise - All cells need a chemical called asparagine to stay alive. Normal cells can make this chemical for themselves, while cancer cells cannot. The enzyme asparaginase breaks down asparagine in the body. Since the cancer cells cannot make more asparagine, they die. Pegaspargase is a modified version of the enzyme asparaginase.
Methotrextate - Methotrexate exerts its chemotherapeutic effect by being able to counteract and compete with folic acid in cancer cells resulting in folic acid deficiency in the cells and causing their death. This action also effects normal cells which can cause significant side effects in the body, such as: low white, red and platelet blood cell counts, hair loss, mouth sores, difficulty swallowing, diarrhea, liver, lung, nerve and kidney damage. This is the drug that will be given in such a high dose four times during IM that she'll need to be hopsitalized while she processes it.
Cytarabine - Cytarabine belongs to the category of chemotherapy called antimetabolites. Antimetabolites are very similar to normal substances within the cell. When the cells incorporate these substances into the cellular metabolism, they are unable to divide. Antimetabolites are cell-cycle specific. They attack cells at very specific phases in the cycle. This drug is the one Polly and I inject Ellie with at home. The anecdote? Piles of stickers she can put all over the front of her outfit. Brings a smile everytime.
Cyclophosphamide - Chemotherapy drugs that affect cells only when they are dividing are called cell-cycle specific. Chemotherapy drugs that affect cells when they are at rest are called cell-cycle non-specific. The scheduling of chemotherapy is set based on the type of cells, rate at which they divide, and the time at which a given drug is likely to be effective. This is why chemotherapy is typically given in cycles. Cyclophasphamide is classified as an alkylating agent. Alkylating agents are most active in the resting phase of the cell. These drugs are cell-cycle non-specific. This drug requires two hours of hydration via an IV for two hours before and after it is given.
Dexamethasone is a potent synthetic member of the glucocortoid class of steroid drugs. It acts as an anti-inflammatory and immunosupressant. The main effects of dexamethasone and steroids like it seem to be due to their anti-inflammatory properties and their ability to alter immune system responses. For example, dexamethasone helps prevent white blood cells from traveling to areas of the body where they might add to swelling problems (such as around tumors). It also seems to help with the treatment of certain blood cancers (such as leukemias) by causing some cancerous white blood cells to commit suicide. This drug also causes huge appetites, swollen faces, huge mood swings.....and is generally an awful thing to have to take.
There are about 3-4 other drugs I have not listed that are on our horizon at some point in future phases. The understanding that these side effects are temporary is paramount to being able to persevere through all of this. Needless to say, if there was a wish to be made here beyond the obvious one to make her whole once again....it would be for me to change places with her. I would do it in a heartbeat.
Please keep praying for her well being. We have been so fortunate to be "event free" for the most part the last month or so. We hope to keep it that way.
Saturday, October 1, 2011
Consolidation Done - Day 94
I think the tone of the words that end up in these blog posts have almost everything to do with time of day I decide to sit down and write. It's Friday afternoon right now, I'm fired up and ready to go. Yesterday was an absolutely exhausting day at the tail end of a week that often seems to crawl by at times. I'm just not a big fan of Thursdays and have been sleep deprived. Quality sleep works minor miracles and oh what anything over 6 hours solid can do for the mind, body, and soul. Much more positive things to say today as a result.
Day 94 marks the end of the 8 week Consolidation phase. Yeah! Ellie received her final shot of Vincristine this morning and got a blood transfusion to raise her red blood cell count for the weekend (often its almost like an instant adrenaline boost). Since she has not had any drugs that would suppress her immune system in a little over a week, her body should be elevating back to really good blood counts by early next week. This means her energy will be great and we may even be able to take her out of the house somewhere. She gleefully took a bright yellow hat out of the fun box that "Joe" brings around the Bass center every now and a again while kids are getting their chemo (Joe is a kind hearted older man who roams the hallways at LPCH as a volunteer on a daily basis just checking in with folks and making sure everyone is doing ok). Seriously, this thing is like a light bulb. But Ellie is so excited to announce upon her arrival home the new things she has gotten while at the hospital that you would think she'd just been to Disneyland. Even though she has been neutropenic for the past 3 weeks, she has been smiling the whole time. And when she smiles, Polly and I smile. Its infectious really. Goes back to what I was saying a while ago about her teaching us. Years from now when I tell her about how she battled so hard throughout this fight to get the upper hand, I will always remind her of the smile she possesses and how our feelings of hope raise exponentially every time she showed us the way.
Our next 8 week phase is called Interim Maintenance (IM) which will start next week. It has its good parts and not so fun parts as they all do. The good part is that the amount of chemo she gets is a lot lighter in terms of day to day over the next 8 weeks. The not so fun part being that one of the drugs is given in such a high dose that it requires in-patient hospital stays for observation purposes at weeks 1, 3, 5, and 7. So, if her blood counts come up by this coming Wednesday, she will be admitted next Friday for about 3 days for her first stay and IM officially begins. The significance of this IM start date is that per our ALL protocol, all of Ellie's treatment will officially end two years this day....which would be October of 2013 (about 466 days in all). We are told we have our hardest 8 weeks of all coming up after IM is over (especially it being in the middle of the winter) so any sort of easier schedule between now and then will be welcomed with open arms.
We had to say goodbye to our Nurse Practitioner, Erika, today because she is leaving Stanford and moving with her family out of state. Leukemia protocols are fairly straight forward in terms of what & when things need to be done so that if you are on schedule as Ellie is, you typically don't see the actual doctor very often. So, the close relationships are built with the NP's. Erika has provided tremendous reassurance when we've needed it the most and tolerated our mini-freak outs whenever they have occurred. It is these types of individuals that help turn parental shock into an empowered support structure where chaotic days and nights during treatment can be handled more rationally. We owe her a great deal of thanks and really hope we'll be able to form the same bond with our new NP. What a job this is for them. You have to be incredibly organized, compassionate, understanding of the seriousness of every treatment step, and above all you've got to be able to persevere through the emotions that cancer puts everyone through. There's no way a doctor or nurse can go 466 days with one patient and not form some sort of bond. The fatigue on everyone involved can be unbearable sometimes, I'm sure, if not from medical procedures and results....then definitely from all of the dealings with stressed out parents. This is where I believe faith and the power to dream fuel the human spirit. Everyone comes together and just finds a way. I will never stop saying thank you to these wonderful people.
I get asked from time to time about the various drugs Ellie has been given over the past few months. I did a little research and will give some likely too scientific responses in the next post about the various chemo weapons in our arsenal. I did want to say that the drugs we are dealing with now have been around for years. Research and tons of clinical trials (brought together under one roof by the C.O.G. - Children's Oncology Group) has found a way to mix and match these drugs at strategic times in doses and quantity throughout treatment. This ensures the enemy in all of this doesn't get too used to fighting just one drug and build up resistance. In the 1960's 1 out of 25 kids Ellie's age survived. In 2011, that ratio is now 4 out of every 5 in the same age group. We have good reason to dream now....and dream big.
One of my favorite movies of all time centers around the true underdog who attempts to play football at Notre Dame (and YES, the framed poster of that movie still hangs in my house....all be it in a less prominent location than when I was not married :-) ) During the initial part of his journey to fulfill his dream, he loses his best friend Pete to an accident at the family Mill. The hardship is ultimately what gives him the strength to begin his quest away from home and pursue admittance into Notre Dame. Prior to the accident, Pete gives him a birthday gift of a letterman's jacket, a pat on the shoulder, and a simple statement - "Well, you know, my Dad always said having dreams is what makes life tolerable". It is the little things said to us on a daily basis like this which can resonate for a very long time. So no matter how little sleep we get and how tiring the weeks become, the dream here is alive and well...spearheaded now with a bright yellow hat.
Day 94 marks the end of the 8 week Consolidation phase. Yeah! Ellie received her final shot of Vincristine this morning and got a blood transfusion to raise her red blood cell count for the weekend (often its almost like an instant adrenaline boost). Since she has not had any drugs that would suppress her immune system in a little over a week, her body should be elevating back to really good blood counts by early next week. This means her energy will be great and we may even be able to take her out of the house somewhere. She gleefully took a bright yellow hat out of the fun box that "Joe" brings around the Bass center every now and a again while kids are getting their chemo (Joe is a kind hearted older man who roams the hallways at LPCH as a volunteer on a daily basis just checking in with folks and making sure everyone is doing ok). Seriously, this thing is like a light bulb. But Ellie is so excited to announce upon her arrival home the new things she has gotten while at the hospital that you would think she'd just been to Disneyland. Even though she has been neutropenic for the past 3 weeks, she has been smiling the whole time. And when she smiles, Polly and I smile. Its infectious really. Goes back to what I was saying a while ago about her teaching us. Years from now when I tell her about how she battled so hard throughout this fight to get the upper hand, I will always remind her of the smile she possesses and how our feelings of hope raise exponentially every time she showed us the way.
Our next 8 week phase is called Interim Maintenance (IM) which will start next week. It has its good parts and not so fun parts as they all do. The good part is that the amount of chemo she gets is a lot lighter in terms of day to day over the next 8 weeks. The not so fun part being that one of the drugs is given in such a high dose that it requires in-patient hospital stays for observation purposes at weeks 1, 3, 5, and 7. So, if her blood counts come up by this coming Wednesday, she will be admitted next Friday for about 3 days for her first stay and IM officially begins. The significance of this IM start date is that per our ALL protocol, all of Ellie's treatment will officially end two years this day....which would be October of 2013 (about 466 days in all). We are told we have our hardest 8 weeks of all coming up after IM is over (especially it being in the middle of the winter) so any sort of easier schedule between now and then will be welcomed with open arms.
We had to say goodbye to our Nurse Practitioner, Erika, today because she is leaving Stanford and moving with her family out of state. Leukemia protocols are fairly straight forward in terms of what & when things need to be done so that if you are on schedule as Ellie is, you typically don't see the actual doctor very often. So, the close relationships are built with the NP's. Erika has provided tremendous reassurance when we've needed it the most and tolerated our mini-freak outs whenever they have occurred. It is these types of individuals that help turn parental shock into an empowered support structure where chaotic days and nights during treatment can be handled more rationally. We owe her a great deal of thanks and really hope we'll be able to form the same bond with our new NP. What a job this is for them. You have to be incredibly organized, compassionate, understanding of the seriousness of every treatment step, and above all you've got to be able to persevere through the emotions that cancer puts everyone through. There's no way a doctor or nurse can go 466 days with one patient and not form some sort of bond. The fatigue on everyone involved can be unbearable sometimes, I'm sure, if not from medical procedures and results....then definitely from all of the dealings with stressed out parents. This is where I believe faith and the power to dream fuel the human spirit. Everyone comes together and just finds a way. I will never stop saying thank you to these wonderful people.
I get asked from time to time about the various drugs Ellie has been given over the past few months. I did a little research and will give some likely too scientific responses in the next post about the various chemo weapons in our arsenal. I did want to say that the drugs we are dealing with now have been around for years. Research and tons of clinical trials (brought together under one roof by the C.O.G. - Children's Oncology Group) has found a way to mix and match these drugs at strategic times in doses and quantity throughout treatment. This ensures the enemy in all of this doesn't get too used to fighting just one drug and build up resistance. In the 1960's 1 out of 25 kids Ellie's age survived. In 2011, that ratio is now 4 out of every 5 in the same age group. We have good reason to dream now....and dream big.
One of my favorite movies of all time centers around the true underdog who attempts to play football at Notre Dame (and YES, the framed poster of that movie still hangs in my house....all be it in a less prominent location than when I was not married :-) ) During the initial part of his journey to fulfill his dream, he loses his best friend Pete to an accident at the family Mill. The hardship is ultimately what gives him the strength to begin his quest away from home and pursue admittance into Notre Dame. Prior to the accident, Pete gives him a birthday gift of a letterman's jacket, a pat on the shoulder, and a simple statement - "Well, you know, my Dad always said having dreams is what makes life tolerable". It is the little things said to us on a daily basis like this which can resonate for a very long time. So no matter how little sleep we get and how tiring the weeks become, the dream here is alive and well...spearheaded now with a bright yellow hat.
Wednesday, September 21, 2011
Faith - Day 85
Faith is helping us get to work on the things we care about everyday....and do so with purpose. Faith is putting a smile on Ellie's face today and making sure she laughs out loud every time Timmy plays Duck-Duck-Goose with just the two of them. Faith will see her march into LPCH tomorrow like a brave soldier, get her shots, and walk out forgetting almost instantly what just happened. Faith is holding us together when we crave normalcy. And Faith is what we have when we see the future of these two doing wonderful things to make their mark on the world. Faith - Intangible, sometimes illogical, but essential.
Polly and I were invited by a colleague to be guest Bartenders at her Team in Training Fundraiser for the Leukemia and Lymphoma Society this Friday night at the Carlos Club in San Carlos from 8-9:30pm. She will be running a marathon soon having raised many thousands of dollars in sponsors. All proceeds from her efforts and from funds raised this Friday go directly to LLS. So, come on out, join us for a beverage, and support Ellie and her amazing cancer Warrior friends.
Here is a poem that spoke to me tonight:
Polly and I were invited by a colleague to be guest Bartenders at her Team in Training Fundraiser for the Leukemia and Lymphoma Society this Friday night at the Carlos Club in San Carlos from 8-9:30pm. She will be running a marathon soon having raised many thousands of dollars in sponsors. All proceeds from her efforts and from funds raised this Friday go directly to LLS. So, come on out, join us for a beverage, and support Ellie and her amazing cancer Warrior friends.
Here is a poem that spoke to me tonight:
To have faith is to defy logic.
It takes faith to think positively.
It takes faith to believe that there is a loving God who cares deeply about our pain.
To believe in life, the universe, or yourself after numerous failures is to have courage.
Faith is an act of courage.
It is choosing to get up in the morning and face our fears and believe that God will help us.
Faith is choosing to believe that even though we may have failed one hundred times before,
we can succeed the next time.
~Anonymous
Ellie is my Hero.
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