- Polly
Monday, January 30, 2012
Prayers Please For Ellie - Day 217
Please pray for Ellie today. She has been either crying or sleeping since Friday and is miserable. It is the hardest thing as a mother or father to not be able to console your baby, and right now there is nothing we can do to make her feel better. I took her this morning for labs and a sick visit with her doctor in hopes that he may be able to give us some way to make her feel better, and unfortunately he said there is nothing we can do right now. He thinks this is all steroid induced, though I think she is also in pain from the vincristine/doxorubicin combo she has had the last three weeks. Her last dose of steroids for this phase is tomorrow morning and he thinks that hopefully by the weekend she will start to feel some relief. So please, even if you are not a praying person, send healing thoughts to Ellie.
Thursday, January 26, 2012
Fear - Day 213
As a parent, I try to employ methods that give my kids the best chance of growing with love and structure building a foundation for the future. As a teacher, the goal is the same. Using "every so often" as the term describing the frequency of ridiculously difficult issues, challenges, and let's face it - problems - would not be truthful. No, the correct word choice would be DAILY. Many times I have felt inadequate because it is seemingly impossible to put the proper depth into every problem thrown my way or perhaps inexperience takes the trial-by-fire approach to its worrisome limits. The problem compounds ten fold when the best laid plans, the most thought out methods, and the sure-fire solutions are deployed.....oh and deployed again....and then you come to find out that things are still not working the way they are supposed to. Sometimes nothing works. So as a parent and a teacher (and coach), the nagging question in my head is simply - "What in the heck do I do now?"
Sometimes the answers are just not there. I start thinking about Kevin Costner sitting in is corn fields trying to decipher where the voice is coming from telling him to build his ball field. In his frustration at one point he yells out "What does that MEAN????" Back in reality this translates daily in math class when a student is gnawing on a 5 step problem and is painfully stuck on step 3 with no relief in sight from step 4. All he wants in the world in that moment is for me to tell him what the correct choice is. He has double checked his work, retraced his steps, and yet still coming up with a helpless blank. I attempt to guide but I simply cannot hand over the solution. (Where would we be in the educational world if the answers were handed out at the same time as the initial test?) And so, ironically, I find myself perpetuating the same problem I struggle with when I get home. Despite frustration, fatigue, and occasional fits of desperation, answers will not be given all the time even with the best strategies at my disposal. Ellie is in PAIN - What DO I DO?
It is a scary dilemma. Every cancer patient reacts differently to just about everything chemo related. So easier said than done (Believe me), but we have to find a way to push through and pray that clarity comes sooner rather than later. Despite its unpredictability and unknown timeline, faith shows us an inevitable resolution. Always does....and dammit if it isn't the hardest thing sometimes to wait for.
Ellie completed her third and final round of chemo this past Tuesday for the first half of Delayed Intensification (DI). She has five days of steroids left and then we will begin the waiting game. Her blood counts will have to bottom out and then recover to qualifying levels to start the second half of DI hopefully around the second week of February. We had a week off from steroids last week and then restarted them again on Tuesday following the chemo treatments. The effects from the first week had not fully left her and so this second round has had side effects come on quicker and stronger. She is cranky from the DEX and nauseous/uncomfortable from the chemo which is a combination that causes her appetite to drop to almost nothing. Her hunger cravings will hopefully be back in a couple days when the chemo in her body lessens. She has spent the better part of the last 48 hours in some pain and unable to do much activity for lengthy periods of time. Her favorite relief comes lying face down on Polly's lap and having Polly stroke her back. Thankfully good ol' Elmo provides some comic relief as well and so we have had some good doses of therapeutic Sesame Street this week. Her and Timmy just one day out of the blue started singing one of the songs by memory. My laughter turned to minor annoyance because twice now I have gone to work whistling the tune not able in the least to get out of my head. "SING....SING A SONG..." Ok, I'll stop.
We are still germ free (sledgehammering on wood!), and have been able to keep a somewhat decent schedule in the last two weeks. Polly has taken her to the clinic twice this week and will go twice more next for checks on labs. Another remarkable thing is that despite her blood counts starting to plummet, her ANC has remained fairly resilient above 500 thus keeping up her own defenses against germs pretty well for the time being. She hasn't had to have any transfusions quite yet which minimizes the long hours at the clinic on some days. Her usual 5am wake up calls have been moving into the 3:45-4:15am range on some nights. Awakening at that time even after having troubles falling asleep each night which requires Polly to sit outside her bedroom door for sometime before she finally conks out. Nothing is ever better when everyone is tired, that's for sure. The saving grace in all of this sometimes? Timmy. She will go to sleep faster and easier when he is in the room. On several occasions over the past couple months, he tries to reach through his crib rail to her to give her one of his stuffed animals or just see if she is OK. It doesn't happen every night and he does his fair share of waking her up because he cannot find his paci (or one of the 155 stuffed animals in his crib he insists on sleeping with), but he can provide her with a kind of support that nobody else can. That much is for certain.
Three weeks of DI down and about 5-6 to go. It will get worse before it gets better because of the particular drugs on tap for weeks 5-8....especially the ARAC which we have to give her via a shot into her arm at home four days in a row for two weeks. Fortunately, the steroids will be done by that point and we will have her charismatic smile back every morning. The times when she moans in pain can seem four times longer than they really are but yet here we are already 5 days away from the end of January. We started this journey exactly 7 months ago today.
Polly and I find ways to get away mentally from things even if just for a few moments on occasion. The serene feeling of the hour or two we have at night after both are finally asleep in peace in their room goes by quick but it is something. My soccer season is reaching its climax with only 4 games left til the playoffs and so I can easily immerse myself into game film or conversing with coaching friends. The distractions keep me from tearing my hair out over finding answers that are not forthcoming that day. One of the reasons I've worked so hard in the past is because there is a part of me that searches for that time when all issues are settled and I can ultimately relax fully, completely, and totally for an unspecified amount of time without worry until I decide to start up again. Spring time always brings about that opportunity. I have my doubts that is going to happen this year but I am willing to keep trying to figure it out. Maybe the end of DI will shed some light. If anything, I can always get into my car, turn on my Burning Heart - SURVIVOR CD, rev the engine, and drive around for a few miles shifting my manual transmission on my Ferrari (ok, its an Eclipse) about 26 times every 5 minutes. (C'mon now, I've gone seven long months without making a ROCKY IV reference on this blog so it was just TIME to do so. Besides, its unamerican without it)
What to do when things aren't working as you hope they will or answers are not coming fast enough? I fear that helpless feeling. Several years ago as I was preparing, I thought I would get to that point many times in my first year of teaching. Yes problems arose, but eventually solutions came. Not all with smooth edges mind you or with like-able conclusions, but they did show themselves and immeasurable experience was gained. This cancer battle is obviously on a different level of magnitude and the energy it requires is something that humbles my daily priorities. Polly and I were able to manage and get through her pain today, so I figure we're now one day wiser for tackling tomorrow. We must have faith that is enough for now.
I'm going to sign off with a powerful poem that speaks to me today. The first two lines of which were used as a central theme in the true story movie made a few years back called "Coach Carter" about the Richmond High School Basketball team here in the Bay Area. Thank you deeply from Polly and I for all the continued prayers and support for our beautiful little girl.
Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
It is our Light, not our darkness, that most frightens us.
We ask ourselves, who am I to be brilliant, gorgeous, talented and fabulous?
Actually, who are you not to be?
You are a child of God. Your playing small doesn't serve the world.
There's nothing enlightened about shrinking so that other people
won't feel insecure around you.
We were born to make manifest the Glory of God that is within us.
It's not just in some of us; it's in everyone.
And as we let our own Light shine, we unconsciously give other
people permission to do the same.
As we are liberated from our own fear, our presence automatically
liberates others.
~~ Marrianne Williamson ~~
Thursday, January 19, 2012
Angel LeAnn - Day 206
My heart is heavy tonight. We've had a pretty full week and though we have found our bearings again, there are no shortage of thoughts swirling around in my head. It is really easy sometimes to get into our weekly routine (even now with labs one day and chemo the next) and then have your mind start fooling yourself like everything is getting back to normal. Ultimately there is a reality hook every so often, like it or not, to reel you back in. Emotions can be so raw at times that there just isn't anything more to say. I've spoken about it before, but the kinship we feel with other parents who are going through this is amazingly strong. So many stories we have heard and read about are near identical to ours. There are 200 new childhood cancer patients diagnosed in the United States every single week. So, that makes us a part of the biggest parent militia in the world by my count. The support is genuine and as a result we feel a very deep connection with their joys and their struggles.
Ellie's fight with the side effects of the DI treatment has been up and down. With all that I will share below, I want to make no mistake in this next statement - we are extremely fortunate to still be going through this at home without having to make any late night trips to the ER. Please PLEASE pray for as germ free of a January and February as we can get within the confines of our family home. Last week, the effects of the Vincristine and Doxorubicin took about 36 hours to set in. The acute effects of the DEX steroid went into effect by Thursday. Her blood counts had not started to drop quite yet, but the increased nausea and constipation were definitely there as well. Steroids are just nasty things. Why on earth would someone take these crazy pills to hit a baseball further??? Seriously. The DEX turns her into a fire breathing child one minute, someone who is craving a five course meal the next, and then a fatigued soul on the brink of exhaustion still the next. We find peace when she goes to sleep at night and thankfully puts in a solid 10 hours before waking at her customary 5am time slot to come crawl into bed with us. I know when she has returned to her normal self again because as I wipe the sleep from my eyes and pick her out of the crib, she softly says "Hi Daddy" with a big grin.
During induction's DEX phase, the food of choice was Yo-Baby Yogurt. Not so easy this time around. The requests have been coming in fast and furious for Potato Gnocchi. Go figure. Not just any gnocchi mind you. It must be marinara covered gnocchi from Trader Joe's which we buy frozen now by the pallet. Somehow the marinara flavor every morning finds its way to my bowl of cheerios. Oh yes, yummy. We completed the first week of DEX on Monday morning of this week and are now in the midst of a week off Steroids until this coming Monday when we will start again for another 7 days. The effects are still lingering as of today, but it hasn't been nearly as bad on the mood swing front which made today a lot more enjoyable for everyone.
Chemotherapy observations and side effect symptoms make you question EVERYTHING. Polly and I are so acutely aware of signs from her diagnosis that we get very nervous anything even remotely close to a single symptom of that time "seems" like it may be showing up. It is our world of constant worry, maybe even call it my own relapse paranoia. I hate it. I do not let it rule my world, but it is there. If you remember, Ellie's stomach appeared very very big back in June in part because of an enlarged liver from the leukemia. This past weekend, Polly pointed out that her belly had gotten bigger and when I felt it, it had become very firm. And so my heart leaped into my throat. She had just seen our nurse practitioner earlier that day and they had said she looked great, so how could this be???? I swarmed to find her latest blood data and saw that most of it looked normal except that her white blood cells has risen to their highest point since diagnosis and so again how could this be??? Inevitably, we go back to what we are always supposed to do - and that's call the doc. So we called and were reminded of the constipation issues. Soon thereafter, Ellie maxed out a diaper and her tummy was back to normal. I think our own fatigue doesn't help the situation as we find ourselves scurrying around the house to make sure she is comfortable and Timmy doesn't end up trying to shove jelly beans into the cracks of the coffee table just after attempting to climb on top of it (again). This past Tuesday was not a good day for several reasons, but in all of this chaos I managed to ground myself again thanks to some supportive texts from an incredible friend and the ability to share tears with my incredible wife once the house was finally at peace that night.
And here is the irony in all of this. Amongst all of these awful side effects that have started overtaking her in the last 10 days, Ellie's body over the last two weeks has shown signs of regeneration. The elevated white blood cell count (WBC) I spoke of earlier had been a number that was steadily climbing since the Interim Maintenance chemo has left her system. Since chemo started on June 27th, she had not been above 2600 WBC. Her numbers on Monday were 5700 just on the cusp of what a normal human being has (5K-10K). Her hemoglobin was back in normal range and her platelets had maintained a +200K count since Christmas. Her ANC hit a high of 5875 - are you kidding me?!!! But the absolute kicker is the visual sign that had been starting to show itself. Her hair has started to grow back in. Now of course we cannot get too excited about this because the DI drugs will wipe it away again in the next couple of weeks....BUT, to see her physically recovering (likely due to the fact that we had a nice 3 week break from Chemo over Christmas) gave me another ray of hope that my little girl behind all of these treatment phases is alive and well and just waiting to come out. My "Hi Daddy" in the morning might as well be a purposeful "Don't Worry" for the moment.
Our oncologist has told us that the worry of relapse is not going to go away for a very long time, possibly ever. I have to remember our day-to-day pledge and keep a good perspective (though I refuse to bury my head in the sand with what "might" be ahead). The chemo treatments are more or less a safety blanket for the time being. I think my blood pressure will get its true test the day she goes off treatment and must now trust her body to maintain on its own. But we will cross that bridge on another day. Not today.
After Tuesday's rough spots, I was on the field Wednesday preparing for another intense WCAL soccer game. It is quite the whirlwind on game days to be teaching 4 classes and then head immediately out to the field for a much anticipated match. The mental preparations along with fighting off fatigue is a challenge though one I welcome because soccer allows me to escape for a short while. As my team was going through its normal warm ups, the opposing team's captains approached me by surprise and presented me with a card full of prayers and well wishes from their entire team. Again, complete strangers reaching out and this time young 16 and 17 year old high school students. It was simple yet very meaningful and it added some strength to my day. To those kids, I am extremely grateful. Little things can make all the difference sometimes.
Along with the friendship we find with so many other childhood cancer families, we also get attached to stories and progress. Each one is connected to us through some point of our treatment journey when we first happened to cross paths either in person or online in our virtual support communities. On Tuesday we learned of the passing of LeAnn, a beautiful 14 year old girl who had been fighting ALL for 15 months and was in the midst of preparing for a Bone Marrow Transplant before pneumonia set in while her body's immune system was down. LeAnn's mom was one of the first people to welcome me to the LLS support forum where we started exchanging questions and answers on cytogenetics and how best to give that foul tasting DEX to our kids. It felt like we had returned to our foxhole that night missing a member of the team and the sadness and anger that came along with it were overwhelming. It's like getting the wind knocked out of you and those moments where you are trying to find air again. This was my first experience losing a fellow warrior while being in the fight myself. Dammit, this isn't fair. My prayers for her family will continue to go on for quite sometime and my hope is that peace will come again. I hope you will join me in those sentiments. Angel LeAnn is now pain free and I thank her for showing me the true worth of a person.
I am thankful for every single day I get to pick my kids up from those cribs. I'm signing off on this post at about midnight. Just another 5 hours til I get my "Hi Daddy". Can't wait.
Thursday, January 12, 2012
Endurance - Day 199
There definitely is no longer a delay....intensification is here. I think the endurance factor is going to be something to really embrace through these next couple of months. Endurance requires reserves of strength and stamina when fatigue sets in. I think also despite the plea to take things day by day, there must always be a small thought of the bigger picture to know an end to it all will come eventually (at least that's what I have to keep saying to myself). We were spoiled a bit with the 3 week break from treatment at Christmas time and I think still need to get our day to day "sea" legs back under us for DI.
When Polly was pregnant with the twins, we went to this "holistic" birthing class to check it out. (Ok, I went kicking and screaming....but I went nonetheless in support of my wonderful wife and there we stayed for several Tuesday nights in a row) There was a story told in pieces throughout the duration of the course meetings we had with other parents to be which comes to mind right now. I don't recall every detail but it involved the main character hearing a voice calling her name for several days. As she searched for the source of the voice, she finally came upon a window or portal in which she found out that she had no choice but to go through. The voice changed its tone when she approached the window and said something to the affect of "No one passes through unscathed or unchanged". (Yep, at the time I thought I was dead center at the "funny farm" awaiting my straight jacket) So, this main character starts to push her way through the portal and essentially take an inevitable leap of faith. That leap is frightening, somewhat blind, and about the biggest unknown she had ever faced. The point of the story, of course, was her journey to meet her newborn child. The rest of the tale is fuzzy at best and though I didn't give the story much of a serious chance at the time, this idea of standing at the portal is what pops in my head a lot with this cancer journey. How I would probably be standing there for days sometimes knowing full well I cannot go back but completely unsure of what to do next on many an occasion. Pretty amazing how things said to us which we don't pay much attention to at the time come back to make perfect sense years later. Finding a way to embrace a change that has left you anything BUT unscathed helps with the endurance factor as hard as it may be sometimes for me. I want to be concentrating on potty training, pre-school, and saving for a house someday that has corner windows....but will endure the nights of mixing steroid solutions, organizing an endless supply of syringes, and making sure Polly has everything she needs while Ellie clings to her as long as it takes to get to the other side of this.
Monday's first day of DI chemo treatment went OK. We've learned that showing up early for check in gives us a slight chance of getting on with things quicker in case another patient fails to show up for their appointment or doesn't make counts (which happens all the time). Ellie went through her lumbar puncture about 10am to receive a spinal injection of Methotrexate. I went with Polly to help distract Ellie a bit because she wasn't allowed to eat anything after midnight the night before and lets just say she isn't the most patient individual when hungry in the morning. Surprisingly she did quite well. We were able to get Nemo showing on the Pre-Op room TV and then there are the always fascinating videos to watch Timmy has made filming himself on the "mini-pay pay" (my iphone) which usually involves 10 second spots of half his head tilting in several directions as he pushes any and all buttons while the camera rolls. Throw in some background music from the radio in the car he was in while doing it, and Ellie gets a nice laugh out of it while playing it back.
After her recovery from the general anesthesia, she went into a private room in the Bass center to get a 1 minute push of Vincristine through her port and a 15 minute push of Doxorubicin (Doxo). Doxo is the heavy hitter of DI....though let us not forget the annoyances caused by Vincristine. She will go back to LPCH tomorrow to receive her PEG-Aspariginaise shots in her legs and thus the onslaught of chemo drugs toward any remnants of cancer in her marrow is on. She will get a weekly port injection of Doxo and Vincristine each of the next two weeks as well. The Doxo will lower her blood counts to neutropenic levels. Our sense for isolation is already in full gear as we question even letting her set foot outside our front door sometimes. Believe it or not, all of these could be much more tolerable if it weren't for the course of steroids that accompany two of the first three weeks of DI. We give her oral doses of Dexamethasone (DEX) twice daily and while most oral drugs have little taste or can easily be masked by cherry syrup, the DEX is about the foulest tasting thing she's ever had. We haven't had it since Induction in July and so are a little out of practice with it right now in terms of how best to give it to her. We've mashed it into yogurt and chocolate sauce, but what seems to work best is just trying plain old water and giving it to her as fast as possible.
DEX produces bad mood swings and the Vincristine gives her joint pain in her legs. She started showing signs of irritability by Tuesday morning and now for the better part of the last two days has just sat and cried. It's heartbreaking. My wife, who is nothing short of amazing in her own right, has sacrificed so much time from work to be here at home holding her non-stop like today when Polly is the only person Ellie will allow even near her. We jokingly have called our son, "Tornado Timmy" on some days because of his jubilant desire to pull as many toys and books off of shelves as possible while playing throughout an afternoon. But remarkably on days like today, he was at Polly's side trying to make sure Ellie was ok. He is starting to pick up on the fact that something is wrong and my hope is we can continue to keep life as normal as possible for him. For a two year old, he has incredible patience sometimes. We have been able to sleep relatively normally, thankfully this week which is likely our saving grace. Please help pray that continues. For me, seeing Polly withstand these tough times fuels my resolve to work harder on what I can earn for the sake of the family.
We owe our friend Kathy a great deal of thanks for giving the twins a teacher led day at pre-school all by themselves last Sunday (day before DI started). They had so much fun, we had to coax them out of the building when it was time to go. And there was that small thought that needs to show itself from time to time of the bigger picture....of what's possible someday on the other side.
Endurance requires faith in purpose. I have no idea if next week will be better or worse, but I do know we got through today and we have a good idea on how we're going to try to tackle tomorrow. I'm saying a prayer of healing tonight for my co-worker who just lost her brother to a long battle with Lymphoma this week. While I know not much detail about his particular situation, I do know she has gone out of her way to give hope to mine while sharing stories of similar struggles. I am forever grateful for those conversations. Faith is alive and well because of the support Polly and I receive from so many different sources. And so, our purpose to endure and push forward goes on.
When Polly was pregnant with the twins, we went to this "holistic" birthing class to check it out. (Ok, I went kicking and screaming....but I went nonetheless in support of my wonderful wife and there we stayed for several Tuesday nights in a row) There was a story told in pieces throughout the duration of the course meetings we had with other parents to be which comes to mind right now. I don't recall every detail but it involved the main character hearing a voice calling her name for several days. As she searched for the source of the voice, she finally came upon a window or portal in which she found out that she had no choice but to go through. The voice changed its tone when she approached the window and said something to the affect of "No one passes through unscathed or unchanged". (Yep, at the time I thought I was dead center at the "funny farm" awaiting my straight jacket) So, this main character starts to push her way through the portal and essentially take an inevitable leap of faith. That leap is frightening, somewhat blind, and about the biggest unknown she had ever faced. The point of the story, of course, was her journey to meet her newborn child. The rest of the tale is fuzzy at best and though I didn't give the story much of a serious chance at the time, this idea of standing at the portal is what pops in my head a lot with this cancer journey. How I would probably be standing there for days sometimes knowing full well I cannot go back but completely unsure of what to do next on many an occasion. Pretty amazing how things said to us which we don't pay much attention to at the time come back to make perfect sense years later. Finding a way to embrace a change that has left you anything BUT unscathed helps with the endurance factor as hard as it may be sometimes for me. I want to be concentrating on potty training, pre-school, and saving for a house someday that has corner windows....but will endure the nights of mixing steroid solutions, organizing an endless supply of syringes, and making sure Polly has everything she needs while Ellie clings to her as long as it takes to get to the other side of this.
Monday's first day of DI chemo treatment went OK. We've learned that showing up early for check in gives us a slight chance of getting on with things quicker in case another patient fails to show up for their appointment or doesn't make counts (which happens all the time). Ellie went through her lumbar puncture about 10am to receive a spinal injection of Methotrexate. I went with Polly to help distract Ellie a bit because she wasn't allowed to eat anything after midnight the night before and lets just say she isn't the most patient individual when hungry in the morning. Surprisingly she did quite well. We were able to get Nemo showing on the Pre-Op room TV and then there are the always fascinating videos to watch Timmy has made filming himself on the "mini-pay pay" (my iphone) which usually involves 10 second spots of half his head tilting in several directions as he pushes any and all buttons while the camera rolls. Throw in some background music from the radio in the car he was in while doing it, and Ellie gets a nice laugh out of it while playing it back.
After her recovery from the general anesthesia, she went into a private room in the Bass center to get a 1 minute push of Vincristine through her port and a 15 minute push of Doxorubicin (Doxo). Doxo is the heavy hitter of DI....though let us not forget the annoyances caused by Vincristine. She will go back to LPCH tomorrow to receive her PEG-Aspariginaise shots in her legs and thus the onslaught of chemo drugs toward any remnants of cancer in her marrow is on. She will get a weekly port injection of Doxo and Vincristine each of the next two weeks as well. The Doxo will lower her blood counts to neutropenic levels. Our sense for isolation is already in full gear as we question even letting her set foot outside our front door sometimes. Believe it or not, all of these could be much more tolerable if it weren't for the course of steroids that accompany two of the first three weeks of DI. We give her oral doses of Dexamethasone (DEX) twice daily and while most oral drugs have little taste or can easily be masked by cherry syrup, the DEX is about the foulest tasting thing she's ever had. We haven't had it since Induction in July and so are a little out of practice with it right now in terms of how best to give it to her. We've mashed it into yogurt and chocolate sauce, but what seems to work best is just trying plain old water and giving it to her as fast as possible.
DEX produces bad mood swings and the Vincristine gives her joint pain in her legs. She started showing signs of irritability by Tuesday morning and now for the better part of the last two days has just sat and cried. It's heartbreaking. My wife, who is nothing short of amazing in her own right, has sacrificed so much time from work to be here at home holding her non-stop like today when Polly is the only person Ellie will allow even near her. We jokingly have called our son, "Tornado Timmy" on some days because of his jubilant desire to pull as many toys and books off of shelves as possible while playing throughout an afternoon. But remarkably on days like today, he was at Polly's side trying to make sure Ellie was ok. He is starting to pick up on the fact that something is wrong and my hope is we can continue to keep life as normal as possible for him. For a two year old, he has incredible patience sometimes. We have been able to sleep relatively normally, thankfully this week which is likely our saving grace. Please help pray that continues. For me, seeing Polly withstand these tough times fuels my resolve to work harder on what I can earn for the sake of the family.
We owe our friend Kathy a great deal of thanks for giving the twins a teacher led day at pre-school all by themselves last Sunday (day before DI started). They had so much fun, we had to coax them out of the building when it was time to go. And there was that small thought that needs to show itself from time to time of the bigger picture....of what's possible someday on the other side.
Endurance requires faith in purpose. I have no idea if next week will be better or worse, but I do know we got through today and we have a good idea on how we're going to try to tackle tomorrow. I'm saying a prayer of healing tonight for my co-worker who just lost her brother to a long battle with Lymphoma this week. While I know not much detail about his particular situation, I do know she has gone out of her way to give hope to mine while sharing stories of similar struggles. I am forever grateful for those conversations. Faith is alive and well because of the support Polly and I receive from so many different sources. And so, our purpose to endure and push forward goes on.
Friday, January 6, 2012
DI Delay - Day 193
It seems to never fail. Every time I post something a day ahead of Ellie's labs and use some sort of arrangement of words resembling "She should qualify easily as things have been looking good"....she doesn't pass. We have been into LPCH three times this week checking her blood counts to get this Delayed Intensification phase going and each time were turned away by an ANC value that is just BARELY below the magic 750 level. I am jinxing things. She is creeping upward, thankfully, and her monocyte count is up which means it should be very soon. BUT, tonight ahead of our next lab trip in the morning (on a Saturday, no less), I am going to try some reverse psychology and see if it works. Here goes - tomorrow morning, we will have a CBC blood panel done to check her red cell, white cell, and platelet counts....and she doesn't have a snowball's chance at passing. The odds of her qualifying tomorrow resemble those of the Cubs winning the World Series. You heard it here first.
That oughta do it.
We like to get Ellie dressed up for her trips over to LPCH because it is one of her few chances to get out of the house and let's face it, if there was a cat walk in the Bass center, she would own it. To show you the resiliency of 2 yr olds, she thinks trips to the Bass center are "meet n' greets". We are very fortunate that she has struck up quite a relationship with several of the nurses and staff. One in particular at the front desk of the clinic, Matiana, who she runs and gives a big hug to the minute we open the clinic door. Labs are fairly short but involve a needle stick into her port which you would think would be unsettling. Actually we have come across other patients in the rooms we share where port accessing is the worst thing of the day for them....and rightly so. I don't have fond memories of any sort of doctor's office shots when I was younger. Most of those kids are a little older than El and so you see the varying degrees of fear that come with age. In about 15 seconds time, Ellie on gentle command from the nurse raises her arms straight out from her body, lefts her head and raises her chin to wait for the poke. With me on Monday after the poke, she then let out a little sigh, smiled, and asked for my applause. I obliged and clapped with thoughts of something like THIS in my head.
The plan if counts are met is to have Day 1 of DI on Monday. It's also the end of my winter break, so time to go back to work as well. Sometimes the worst part of what's ahead is the anticipation. Everything has been so good for the last month but it is impossible to ignore the nagging feeling in the back of your head that things are not nor will they be for some time....quite right. Complacency can get you into trouble. We are praying for a smooth transition and hopes that the winter cold bugs stay away. And I want to say a special prayer tonight for a former student and player's father (Jeff) who was in a very serious biking accident this past weekend and is now hospitalized with spinal cord injuries. Life changing medical events bring a certain lens to your daily perspective that few truly understand until you are able to look through it for yourself and find your way out of some very tough times. I think we owe it to ourselves to use it as an opportunity to stand with the entire community in unison, forget our own agendas for some time, and wrap our arms around those who need it most. Ellie races into the clinic each time and immediately gives out hugs. I think she gets it. Jeff - my wife, my son, and my little girl with the strength of 1000 men are thinking of and praying for you tonight.
That oughta do it.
We like to get Ellie dressed up for her trips over to LPCH because it is one of her few chances to get out of the house and let's face it, if there was a cat walk in the Bass center, she would own it. To show you the resiliency of 2 yr olds, she thinks trips to the Bass center are "meet n' greets". We are very fortunate that she has struck up quite a relationship with several of the nurses and staff. One in particular at the front desk of the clinic, Matiana, who she runs and gives a big hug to the minute we open the clinic door. Labs are fairly short but involve a needle stick into her port which you would think would be unsettling. Actually we have come across other patients in the rooms we share where port accessing is the worst thing of the day for them....and rightly so. I don't have fond memories of any sort of doctor's office shots when I was younger. Most of those kids are a little older than El and so you see the varying degrees of fear that come with age. In about 15 seconds time, Ellie on gentle command from the nurse raises her arms straight out from her body, lefts her head and raises her chin to wait for the poke. With me on Monday after the poke, she then let out a little sigh, smiled, and asked for my applause. I obliged and clapped with thoughts of something like THIS in my head.
The plan if counts are met is to have Day 1 of DI on Monday. It's also the end of my winter break, so time to go back to work as well. Sometimes the worst part of what's ahead is the anticipation. Everything has been so good for the last month but it is impossible to ignore the nagging feeling in the back of your head that things are not nor will they be for some time....quite right. Complacency can get you into trouble. We are praying for a smooth transition and hopes that the winter cold bugs stay away. And I want to say a special prayer tonight for a former student and player's father (Jeff) who was in a very serious biking accident this past weekend and is now hospitalized with spinal cord injuries. Life changing medical events bring a certain lens to your daily perspective that few truly understand until you are able to look through it for yourself and find your way out of some very tough times. I think we owe it to ourselves to use it as an opportunity to stand with the entire community in unison, forget our own agendas for some time, and wrap our arms around those who need it most. Ellie races into the clinic each time and immediately gives out hugs. I think she gets it. Jeff - my wife, my son, and my little girl with the strength of 1000 men are thinking of and praying for you tonight.
Lord, look upon me with eyes of mercy,
may your healing hand rest upon me,
may your lifegiving powers flow into every cell of my body
and into the depths of my soul,
cleansing, purifying, restoring me to wholeness
and strength for service in your Kingdom
Amen.
Sunday, January 1, 2012
Potential - Day 188
I have always had a great affinity for the concept of 'Potential'. I remember my high school chemistry teacher's lesson on potential energy where she pointed to the ceiling and the thin air above where her imaginative "pet boulder" hung ready to fall yet amazingly it still clung to its ropes for the time being realizing its own potential only upon falling. Potential is what could be. It represents ambition and an ideal work ethic to seek out life's goals and adventures. The irony is that it is never fully attainable. Potential exists to show us what is possible and what we can shoot for. The idea of what's ahead if we put in the work now has always been a driving force for me. Being human denies the ability to be perfect. And rightly so. If we were perfect, how would we progress? Its important to learn something new everyday and its essential to stumble as you do only then to have the ability to pick yourself up better than before. I wonder where I would be if I stopped believing in what's possible. Seeking to fulfill potential opens up enriching experiences and of course cultivates hope when little else is there. I will always want today to be better than yesterday in some way, shape, or form. If it isn't....then I will try that much harder tomorrow.
We have come to the end of our incredible 3+ week break from Ellie's treatment that follows the final hospital stay of Interim Maintenance. I don't know how this worked out the way it did, but the three week window happened to be at the exact time of Christmas and New Years. So, not only did we get to open gifts on Dec 25th, but we got to enjoy a happy daughter for the days afterwards which included bike rides, visits with grandparents, some intriguing yet hysterical twin to twin conversations, and even a surprise trip up to stay in the Fairmont Hotel's Presidential Suite on New Years Eve. The recovery period has allowed her body to purge completely of the High Dose Methotrexate and recover her blood counts from the remnants of the 6MP she finished up on Dec 24th. Time truly flies. She has been in remission now for 5 months.
The goal is to be as strong as possible, health wise, for the next and final phase of front line treatment so aptly named - Delayed Intensification or "DI" for short. We have been warned about this phase from the very beginning. It is supposed to be the harshest treatment she will receive in the entire protocol with perhaps the slight exception of those horrible first few weeks we went through during Induction in early July. The various doses and number of drug administrations is actually not that bad. We go in once a week on an out patient basis for 8 weeks for either shots or drugs pushed through her port in short time spans. But, her white blood cell count will likely go down to near zero and thus her energy will be sapped and the likelihood of getting a cold or infection will be very high. We will probably return to the frequent blood transfusion rate we had during Aug and Sept for Consolidation. For the initial three weeks, we also get back on the Dexamethasone (steroid) which causes large mood swings and huge appetites (remember our yogurt demand from summertime?!)
I don't think there really is such a thing as over-preparing. The idea is to understand completely what's in front of you, ask enough questions to feel out what might happen every step of the way, and then take any and all steps to make this as painless as possible. My players on the team often get more info than they ever really wanted to know regarding an opponent. I know very well that 100% of it being retained is not going to happen. The hope in my eyes is that if you can build up an opponent enough, once the game hits it is much easier to be in the thick of things and say to yourself that this wasn't as bad as you thought it would be OR that the preparations helped anticipate their every move and thus were quite effective. It is a far better outcome than underestimating and being shocked once you are there. Regardless, attention to detail is without question essential. So, we're treating this DI phase very seriously.
She'll be receiving 8 different chemo drugs over the course of the 8 weeks. We go in for labs tomorrow to qualify her for the expected start date of Tuesday (Jan 3rd). Once she qualifies with ANC levels above 750 (she was at 590 on Friday so fingers crossed!), she'll get the first four weeks of chemo regardless of what her counts are after Tuesday. She'll then need to qualify for the second 4 weeks at the mid point of the phase. Tuesday she will have another LP procedure (Lumbar puncture) to receive the intrathecal Methotrextate injections as she has many times before. We maintain a negative presence of Leukemia in her Central Nervous system and don't intend for one minute to let it start now. The LP's are the weapon of choice, so to speak and do a great job. She then receives a new drug, Doxorubicin through her port and our good "friend" Vincristine. We'll start giving her steroids at home orally for weeks 1 and 3 of DI. I will be sad to see her beautiful face puff up again as its been 5 months since we've had this particular drug, but she'll bravely take it no questions asked as she has always done. Then, we will be on some serious lockdown for the months of January and February to keep the cold bugs away.
It is very difficult after a couple great holidays with happy kids to have to turn to reality and get back to clinic visits. This extended break we've had has shown us a glimpse of what sort of potential the future holds when she finishes treatment. Polly and I still get amazed at how she and Timmy are growing as kids do between ages 2 and 3. Their vocabulary continues to expand exponentially and their ability to reason why things happen and where various excursions will take them is simply huge fun for us. Timmy continually refers to himself in the 3rd person (in fact I think he believes persons 1 & 2 are firmly against all things Elmo and thus they are banished from any and all forms of conversation - remind me to thank Sir Elmo for grammatical challenges we will face later in life because of this) :) Ellie will then put him in check when he is being out of line by simply raising her index finger and sternly but eloquently saying, "timmMMEEE! Ah-No, No, NO!" Forgive me if I have already mentioned this before, but we use the counting-to-10 rule when it is time for a particular toy to be given to the other sibling who is waiting their turn to play with it....and most times with either of them I don't even get to 5 before one hands it to the other willingly. It does nothing for the volume factor sometimes between the two, but it is a small victory nonetheless that we haven't had to work very hard to achieve. It is also another sign to me that if Ellie were to have to go through this battle without Timmy by her side, this would all be ten times worse.
2011 ended yesterday with Polly and I being able to stare out of the same window we peered out of for the first time as husband and wife on the night of our wedding. Never in a million years thought we would be back in that room 23 floors up atop Nob Hill in the city, but as chance would have it, it happened....and this time the twins were snoozing 20 feet away while we did. Some dreams realized and many more to come. Polly counted that between both the kids this year, we spent 61 nights in the hospital. That's unbelievable and it is unfair. It was a year that I am glad is behind us and one that has shaped, whether we fully grasp it right now on Jan 1st or not, the potential of 2012. I will do everything I can until I cannot move another muscle to make sure this year is better. I don't have much say in the cancer world, but I do have the ability to support, the ability to reach out my hand, and the ability to progress through plain hard work. At the end of DI, we will be done with front line treatment and enter into the Long Term Maintenance which we are told is where Ellie's world gets back to more normal standards. So, there is a vast potential to be found and fulfilled as we enter this rough patch ahead but with a milestone in sight. Coach Valvano said, "In order to know where you are going....you have to know where you are coming from". I won't have too many fond memories of 2011 and I will note that it was a year that changed our lives forever. BUT, it has also expanded our horizons and brought a perspective that I will never stop saying thank you for.
We appreciate your prayers in the weeks upcoming. Today marks a new day and new beginning for a year that can have all the promise and potential a 2 year old deserves. I am going to faithfully accept that to be the truth and jump right in....so let's go. Delayed Intensification - here we come.
We have come to the end of our incredible 3+ week break from Ellie's treatment that follows the final hospital stay of Interim Maintenance. I don't know how this worked out the way it did, but the three week window happened to be at the exact time of Christmas and New Years. So, not only did we get to open gifts on Dec 25th, but we got to enjoy a happy daughter for the days afterwards which included bike rides, visits with grandparents, some intriguing yet hysterical twin to twin conversations, and even a surprise trip up to stay in the Fairmont Hotel's Presidential Suite on New Years Eve. The recovery period has allowed her body to purge completely of the High Dose Methotrexate and recover her blood counts from the remnants of the 6MP she finished up on Dec 24th. Time truly flies. She has been in remission now for 5 months.
The goal is to be as strong as possible, health wise, for the next and final phase of front line treatment so aptly named - Delayed Intensification or "DI" for short. We have been warned about this phase from the very beginning. It is supposed to be the harshest treatment she will receive in the entire protocol with perhaps the slight exception of those horrible first few weeks we went through during Induction in early July. The various doses and number of drug administrations is actually not that bad. We go in once a week on an out patient basis for 8 weeks for either shots or drugs pushed through her port in short time spans. But, her white blood cell count will likely go down to near zero and thus her energy will be sapped and the likelihood of getting a cold or infection will be very high. We will probably return to the frequent blood transfusion rate we had during Aug and Sept for Consolidation. For the initial three weeks, we also get back on the Dexamethasone (steroid) which causes large mood swings and huge appetites (remember our yogurt demand from summertime?!)
I don't think there really is such a thing as over-preparing. The idea is to understand completely what's in front of you, ask enough questions to feel out what might happen every step of the way, and then take any and all steps to make this as painless as possible. My players on the team often get more info than they ever really wanted to know regarding an opponent. I know very well that 100% of it being retained is not going to happen. The hope in my eyes is that if you can build up an opponent enough, once the game hits it is much easier to be in the thick of things and say to yourself that this wasn't as bad as you thought it would be OR that the preparations helped anticipate their every move and thus were quite effective. It is a far better outcome than underestimating and being shocked once you are there. Regardless, attention to detail is without question essential. So, we're treating this DI phase very seriously.
She'll be receiving 8 different chemo drugs over the course of the 8 weeks. We go in for labs tomorrow to qualify her for the expected start date of Tuesday (Jan 3rd). Once she qualifies with ANC levels above 750 (she was at 590 on Friday so fingers crossed!), she'll get the first four weeks of chemo regardless of what her counts are after Tuesday. She'll then need to qualify for the second 4 weeks at the mid point of the phase. Tuesday she will have another LP procedure (Lumbar puncture) to receive the intrathecal Methotrextate injections as she has many times before. We maintain a negative presence of Leukemia in her Central Nervous system and don't intend for one minute to let it start now. The LP's are the weapon of choice, so to speak and do a great job. She then receives a new drug, Doxorubicin through her port and our good "friend" Vincristine. We'll start giving her steroids at home orally for weeks 1 and 3 of DI. I will be sad to see her beautiful face puff up again as its been 5 months since we've had this particular drug, but she'll bravely take it no questions asked as she has always done. Then, we will be on some serious lockdown for the months of January and February to keep the cold bugs away.
It is very difficult after a couple great holidays with happy kids to have to turn to reality and get back to clinic visits. This extended break we've had has shown us a glimpse of what sort of potential the future holds when she finishes treatment. Polly and I still get amazed at how she and Timmy are growing as kids do between ages 2 and 3. Their vocabulary continues to expand exponentially and their ability to reason why things happen and where various excursions will take them is simply huge fun for us. Timmy continually refers to himself in the 3rd person (in fact I think he believes persons 1 & 2 are firmly against all things Elmo and thus they are banished from any and all forms of conversation - remind me to thank Sir Elmo for grammatical challenges we will face later in life because of this) :) Ellie will then put him in check when he is being out of line by simply raising her index finger and sternly but eloquently saying, "timmMMEEE! Ah-No, No, NO!" Forgive me if I have already mentioned this before, but we use the counting-to-10 rule when it is time for a particular toy to be given to the other sibling who is waiting their turn to play with it....and most times with either of them I don't even get to 5 before one hands it to the other willingly. It does nothing for the volume factor sometimes between the two, but it is a small victory nonetheless that we haven't had to work very hard to achieve. It is also another sign to me that if Ellie were to have to go through this battle without Timmy by her side, this would all be ten times worse.
2011 ended yesterday with Polly and I being able to stare out of the same window we peered out of for the first time as husband and wife on the night of our wedding. Never in a million years thought we would be back in that room 23 floors up atop Nob Hill in the city, but as chance would have it, it happened....and this time the twins were snoozing 20 feet away while we did. Some dreams realized and many more to come. Polly counted that between both the kids this year, we spent 61 nights in the hospital. That's unbelievable and it is unfair. It was a year that I am glad is behind us and one that has shaped, whether we fully grasp it right now on Jan 1st or not, the potential of 2012. I will do everything I can until I cannot move another muscle to make sure this year is better. I don't have much say in the cancer world, but I do have the ability to support, the ability to reach out my hand, and the ability to progress through plain hard work. At the end of DI, we will be done with front line treatment and enter into the Long Term Maintenance which we are told is where Ellie's world gets back to more normal standards. So, there is a vast potential to be found and fulfilled as we enter this rough patch ahead but with a milestone in sight. Coach Valvano said, "In order to know where you are going....you have to know where you are coming from". I won't have too many fond memories of 2011 and I will note that it was a year that changed our lives forever. BUT, it has also expanded our horizons and brought a perspective that I will never stop saying thank you for.
We appreciate your prayers in the weeks upcoming. Today marks a new day and new beginning for a year that can have all the promise and potential a 2 year old deserves. I am going to faithfully accept that to be the truth and jump right in....so let's go. Delayed Intensification - here we come.
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