Wow. 2012 is here. For many, it’s just another year. But for us, it’s the carrot on the stick that’s kept our asses moving forward since March of 2009. June 13^th will be Andrew’s last IV chemo and lumbar puncture with chemo into his spine. Then, on July 8^th, he will take his very last oral chemo pill, hopefully in front of a lot of friends and family.

For me, July 8^th is about more than just Andrew. In fact, I’ve found this entire experience to be about way more than just Andrew. When cancer happens, it happens to an entire family, their community, their world. It changes everything. Priorities shift. People change. New normals push, pull, and drag you to places you never thought you’d go. And that’s not always a bad thing. Really, it isn’t.

So, as we march toward those important dates in front of us for the year 2012, I have 12 wishes – 12 things I want more than anything in the world:

1. I wish for healing. In this new year, I wish for healing for the families of our friends who have been lost to this evil and unjust disease. If a genie were at my doorstep, I would wish that all their pain would go away with a big POOF! Short of that, I can only hope that as the new year progresses their pain lessens and they’re more and more comforted by knowing the impact their son, husband, brother, etc. had on this world. I make this wish for my friend Elizabeth most of all.
2. I wish for forever cures. In the early months of 2012, two boys we know will have bone marrow transplants to cure their leukemia. There are others, too, but these two are closest to my heart and are in my thoughts throughout every day. Please wish/pray/hope for successful transplants for our friends Daniel and Jakob. 2012 will be the year they are cured.
3. I wish for strength. As we approach the light at the end of Andrew’s treatment tunnel, I hope that he will continue to show us how strong one boy can be. I hope for the strength and courage we’ll all need to walk the road of survivorship with him without being paralyzed by fear every step of the way.
4. I wish for awareness.  Childhood Cancer Awareness Month isn’t until September, but my wish is for everyone to spread the word about kids’ cancer all year long. If nothing else, remember these numbers: 46/7. Forty-six kids are diagnosed with cancer each day, and seven die. Awareness = Funding = Cure. Spread it.
5. I wish for hope. And by that I mean I hope 2012 is the year we see a revolutionary change in the development of new drugs for pediatric cancer through the passing of the Creating Hope Act. In the last two decades, only two new drugs have been approved to treat pediatric cancer, and one of them was just approved last year. In that same timeframe, more than 50 new drugs have been approved for adult cancers. Why? Because the drug companies go where the money is, and not enough kids are suffering and dying to get their attention. Our kids deserve better. The Creating Hope Act will get them closer. Click here to help.
6. I wish for continued inspiration. In 2011, I was inspired by so many stories of kids fighting for their lives and reaching out to bring hope and strength to the people around them. I hope we hear more stories like that of our friend Joey who inspired so many people — from peons like me to iconic figures like Tim Tebow. In 2012 and beyond, I hope for continued healing for Joey and continued inspiration for us all.
7. I wish for a Momcologist reunion (if not in 2012, then soon thereafter). I am extremely fortunate to have powerful friendships with some simply amazing women who have helped me in immeasurable ways over the last few years. Most I’ve never met in person, and while we don’t need face time to maintain the support we’ve found in each other, it sure would be cool.
8. I wish everyone could be as lucky as we are. Us, lucky? Yep, it’s true – on so many levels. I am so grateful for our friends and families who have tirelessly supported us on this journey. I truly could not ask for better people in my life.
9. I wish for sunny skies on July 8^th. On the day Andrew takes his very last chemo pill, we’re going to kick the crap out of kids cancer. We hope we’ll be surrounded by tons of people for Andrew’s No-Mo-Kemo party and Kick-It kickball event, supporting CureSearch, to raise money for kid’s cancer research. More details coming soon – be sure to check out his Kick-It page.
10. I wish for smooth sailing for Andrew. I’m not as naïve as I sound. I know July 8^th is still pretty far away – here in cancerville, it’s potentially a universe away. I know a lot can happen between now and then and I’m frightfully aware of what could happen to change that date entirely. I also know our world won’t magically transform into roses and rainbows on July 9^th. In the meantime, though, I hope things are calm for Andrew, with more sleep and less pain, more normal and less sacrifice. And, of course, in just a week on the 17^th, we’ll be wishing Andrew a very happy 13^th birthday.
11. I wish for Michael to feel less weight on his shoulders. It’s not easy being the sibling of a kid with cancer. They are undoubtedly the unsung heroes in these battles, shouldering heavy burdens while their families are shaken to the core. Michael’s been dealt a double blow – cancer has taken a lot from him, and his injury has taken even more. Yet he’s still the big brother who says with a genuine smile, “Don’t worry about me. Worry about Andrew.” I hope Michael knows he’s the strongest one of us all, and that I’m proud of him every single day.
12. Finally, I wish the Mayans had been smarter. 2012 as the end of the world? I don’t think so, my misguided Mayan friends, you’ve got it all wrong. 2012, you see, is just the beginning.

Happy 2012, everyone.

From one mom to another, those words sounded awfully familiar. The brain is a crazy thing, as is the heart. Just when your brain tells you you’re past something, your heart reminds you that you’re not. That’s okay, though, I think the heart really is in the right place. Whether it’s an illness, an injury, a loss, or another challenge, these scary dreadful things that invade our lives are not meant to be forgotten. To forget them, I think, takes some credence away from the original experience.

So, especially on Thanksgiving, I will not forget. I will not forget the day of Michael’s accident and the days, weeks, and months of healing that followed. I will not forget the day Andrew was diagnosed, and all he’s been through and continues to go through to fight the evil that is leukemia. I will not forget the kids who are still fighting unspeakable battles just for a chance to grow up. I will not forget the people in our lives who have been lost, or their families who must learn to live without them.

On a Facebook page setup to support Laura Triem, someone posted this poem:

I do not define myself by how many roadblocks have appeared in my path.

I define myself by the courage I’ve found to forge new roads.

I do not define myself by how many disappointments I’ve faced.

I define myself by the forgiveness and the faith I have found to begin again.

I do not define myself by how long a relationship lasted.

I define myself by how much I have loved, and been willing to love again.

I do not define myself by how many times I have been knocked down.

I define myself by how many times I have struggled to my feet.

I am not my pain.

I am not my past.

I am that which has emerged from the fire.

Today I am grateful for both my boys who have each walked through fires no child should have to face. Today I am grateful for my husband, family, and friends who have helped me walk through mine. As for the fire, someday I will be grateful for the scars it has left on all of us, because someday those scars will be all that is left to remind us that we did emerge from the fire, and we are stronger and better because of it. Not today, but someday. Today, we will simply be grateful we have another day together. Because today, and any day, that’s all we really need.

Hope everyone has a safe and happy Thanksgiving.

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A Change in Gratitude

Thanksgiving

Let’s start with the good news. Let’s start with Michael. In August Michael had a complete neuropsychological evaluation. By definition, this series of tests assesses how a person’s brain functions, which indirectly yields information about the structural and functional integrity of the brain. The doc who did the exam had never met Michael before, and I always like to hear what a newcomer has to say. After all was said and done, the doc told us that, based on Michael’s history and the severity of his injury, his recovery is “absolutely extraordinary.” Very nice – I so like to hear things like that. There weren’t too many surprises in the report, but the doctor did really shed some light on how Michael’s post-accident brain works and what we can do at home and especially at school to best help him overcome his deficits. I’ve been so pleased with the support we’ve received from his high school, and that really lifts a heavy burden off my shoulders.

In September, Michael had a follow-up visit with his main traumatic brain injury doctor and she gave us the best news we could hear – “As much as I love seeing you guys, I don’t think I need to anymore.” As Michael would say, “Sweet!” Initially we were told she would need to follow him for at least five years, so to be released after two is another testament to his extraordinary recovery. She did make Michael promise to continue to stay away from any potentially dangerous activities, but at 15 I can only hope he takes that to heart. The only not awesome news related to Michael’s recovery is that he’s having weird and severe pain from his damaged facial nerve. It’s not constant, but seems to be happening more and more frequently. Anytime he smiles too big, laughs a lot, or does some crazy heavy metal screaming, he gets a shooting pain from the nerve that stops him in his tracks. His TBI doc didn’t know what to make of it, so we’ll be following up with the doctor who did his nerve surgery to see if he has any ideas. God knows we don’t want anything to stop Michael from laughing or smiling as best he can, though the screaming isn’t all that important in my book. At any rate, something’s not right there, so that’s on our list of things to figure out for Michael.

Outside of school and doctors, Michael and a few of his head-banging (not too literally, I hope) friends are in a band, and they recorded a four-song demo a few weeks ago. Huge thanks to his friend Gabe’s parents and Globalsound Studio for making this happen. It’s been a bit of a stressor for him to juggle the band with his schoolwork and other commitments, but overall it’s been a huge confidence booster, so we’re very grateful for that.

Okay, on to Andrew. He has really kept us on our toes lately, not that we would expect anything less of him. The school year started out okay, but as of right now he hasn’t attended a full day of classes since Sept. 2. Not good. His teachers have been wonderful about keeping him up to speed, but I am definitely worried about it catching up with him eventually. He wants very much to be there and be successful, but it just seems like the cards have been stacked against him for a while. He started out with a bad cold early in the month that he just couldn’t recover from, and that turned into pneumonia which pretty much knocked him out. He’s also been having a lot more pain than usual, often debilitating, especially in his back. His pediatrician was really on the ball and decided to do an x-ray of his back while they were checking on the pneumonia. Long story shorter, this led to a huge amount of drama I won’t bore you with here. After Andrew endured more MRIs in one day than most people will have in their lifetime, today we got the answers we’ve been waiting for. Under the circumstances, it’s pretty good news considering how bad the news could have been.

Andrew has a disease called Avascular Necrosis (AVN), which in the simplest terms I can muster means the blood supply to some of his bones has been cut off due to the steroids in his treatment, leading to bone death. It can be a very painful condition, and in its most severe form, it can require joint replacements and other invasive surgeries. Fortunately, for Andrew right now, no joints are affected and the only occurrence of the disease is extensive in his tailbone and lower spine. This is causing him significant pain, but is not likely to lead to any long-term damage. There’s really no way to treat AVN at this stage, but steroids have been nixed for now and we hope that will stop it from occurring anywhere else and eventually decrease his pain.

As far as his leukemia treatment goes, we have no huge concerns there. (Whew!) He had a short hold from his at-home chemo last month due to low counts, but he’s slowly recovering and we’re slowly increasing his dosages. We find ourselves watching platelets again as they’re pretty low, but that’s likely just because he’s still getting over the whole cold/pneumonia thing. So, we’ll play the dosage adjustment game until we get him back where we want him. After today, he has nine monthly appointments to go, and only four more spinal taps. Love to see both those numbers in single digits, woo-hoo!

So… there you have it, an actual update. Imagine that! A huge thank you to the many people who continue to keep the boys in their thoughts and prayers. Even when this ride gets bumpy, we never lose sight of what we know is truly important. The boys are here to take the ups and downs as they come, and we all have an amazing support system in our families, friends, and medical teams. At the end of even the most challenging day, we have all that really matters right here in front of us. That makes us one of the lucky ones, and there’s not a day that I don’t both appreciate that and hope and pray for healing and peace for those I know who continue to struggle with grueling treatments, grief, and fears no family should have to face. It’s so true – every day is a gift.  Share it wisely.

God how I wish we didn’t need a go-to phrase for this. Why does this happen? I can’t understand it. I don’t know why kids get cancer. I don’t know why some die. I don’t know why the world needs kid-sized angel wings at all. I do know a few things, though. I know it’s not fair. I know it hurts. I know it’s not easy. I know it breaks hearts and shatters families. With every ounce of my being, I know it’s just not right. Not right at all, today more than ever.

Today leukemia stole another person too soon from our little piece of the world. Mr. Brave has “earned his angel wings,” though I’m pretty damn sure there isn’t a set of wings big enough to embrace his battle, his courage, or his strength.

To Jonathan – You will always be an inspiration to me, to Andrew, to my family, to our school community, and to so many patients, families, and staff members at the hospital. Because of the impact you have had on us, our promise to you is to be part of your legacy, part of what will ensure that you are never forgotten.

To Elizabeth – Even though I’ve only known you for a short time in the big scheme of things, I’m so grateful to call you a friend. I cannot find all the words to comfort you right now, but I hope you know I’m here for you – not just today, or this week, or this month, but always.

To the entire Harrison family – thank you for sharing Jonathan with all of us. We are crying with you, praying for you, and hoping for peace for all of you.

Okay, I have to give him that one… Andrew wins on quantity. I’ve feared for his life more times than I have for Michael’s. The list is long, and started years before cancer was in our lives, when he was just nine days old in fact. But, much to Andrew’s chagrin, Michael wins on quality… or, I guess I should say, he wins on impact. When Andrew was first diagnosed, the word “cancer” was immediately followed by a statement like “It’s very treatable, he will survive this.” With Michael, we got a lot of worst case scenarios and “We don’t knows” for quite awhile following his accident, starting exactly two years ago today. July 17, 2009, is not a day that is easy for me to think about, though it’s been uncontrollably creeping up in my mind all week. The visual memory alone is so powerful, and the emotional pieces…. well, let’s not go there.

Instead, let’s go to where we really are. Today, two years have passed, and Michael has turned all those “we don’t knows” into triumphs. His physical recovery exceeded all expectations, and he works hard to rock at life despite his few lingering neurological deficits. Later this summer, he’ll have a follow-up appointment with his main neuro-rehab doctor, probably another MRI, and a full and hopefully final neuro-psychology exam to help us understand where he may need the most assistance in school and even throughout his life. His freshman year of high school went better than I anticipated, and he’ll be ready to hit the ground running when he starts 10th grade in August (whether he likes it or not). This two-year mark is an important milestone, and though it reminds me of a time I’d just as soon forget, it also offers perspective that’s important for me to remember.

To even the score, I have to say that Andrew hit an important milestone recently too. His official off-treatment date is July 8, 2012, so at this point he has less than a year of treatment to go. It’s crazy how the date I long for so deeply is also one I fear so intensely. Once he’s done with chemo, there’s nothing to stop that damn leukemia from coming back. Nothing, that is, except Andrew’s will. (Sorry, leukemia, but I don’t think you stand a chance.) Overall, he’s doing okay and has been able to enjoy the summer for the most part. It seems like the treatments are getting harder lately as he’s had more joint pain from the steroids, more neuropathic pain from his monthly IV chemo, and more nausea and fatigue from his daily and weekly oral chemo doses. His counts, which had been running a little too high for comfort, have now plummeted with no known reason. My professional momcologist theory is that his body has had its fill of all these toxins, and the heightened side effects and bouncy counts are his way of saying, “Enough already, leave me the hell alone!” I think we might be in for a long and challenging year, but the light at the end of the tunnel gets brighter with each passing day.

Andrew is quick to remind me that July 17 is more than just the anniversary of Michael’s accident. It’s also his half-birthday, so today he is closer to being a teenager than he is to being 12. In true Andrew style, we have debated what makes this day more important – his half-birthday or that whole Michael-almost-died thing. I told him I thought it was a tie. Both events remind me to be grateful for how far they both have come. Both events remind me that their strength and courage have shaped them in powerfully positive ways. Both events help me to look forward to bright futures for both of them. Most importantly, both events remind me that every day with my boys is a gift, a privilege to be treasured, even when they drive me batty. Andrew doesn’t much like a tie, so he can go on thinking today is more about him. That’s okay, I don’t mind. As long as he holds on to that fighting spirit, all is good in my world.

We spent some time at my parents a few weeks ago, and the beauty and power of that place never ceases to amaze me. Our friends the Kowalskis went with us, and we all hiked to the top of one of the hills behind my parents’ house and above the lake (the slideshow above chronicles our effort). For me, I could feel the stress coming off my back as I trekked up the rocks, and by the time I got to the top I felt like I was walking on air. I guess that’s the real Rocky Mountain High.

I don’t think I’ve said it enough lately, so it’s definitely time to say again that we continue to be so thankful for our families, friends, and even complete strangers who continue to support us and keep the boys in their thoughts and prayers. It’s been such a long road, and if you’ve read this far, I know you’re one we owe a thank you to. So… “thank you” – those two words never seem like enough, but know they come from a very special and genuine place. We’re also incredibly grateful for the opportunities we have to enjoy the Colorado mountains so close to home and with people who are so important to us. We can’t wait to go again with the Espinozas in a few weeks, and then spend some extra time at my parents’ with my brother and nephew.

Enjoy the rest of your summer, everyone, I know we will…

What you don’t understand, Leukemia, is that in the wake of your destruction you leave more than just heartbreak. You also leave inspiration of the strongest kind. In this case, you leave hundreds of students who are better people having been in Mr. Wright’s classroom. You leave future leaders, doctors, and scientists… and pretty damn smart ones, too. Because of what you’ve done today, maybe you’ve inspired one of those students in a way that will make you regret what you’ve done. Maybe one of them will take what he or she learned from Mr. Wright about science and about character and about being truly relentless and apply it to finding the cure to you once and for all. Maybe it’s one of them who will become your nightmare someday.

So, to Leukemia… you’ve broken many hearts into irreparable pieces today, but you have not broken our minds or our spirits.

To Mr. Wright… thank you for giving of yourself so boldly, so selflessly, and so generously. Thank you for always praying and cheering for all of us.

To Stacy, the kids, and all the Wrights… thank you for sharing John with us. He changed many lives in so many powerful ways. We will never stop praying. We will never stop cheering. Not ever.

My Declaration of Self-Esteem

I am me. / In all the world, there is no one else exactly like me. / Everything that comes out of me is authentically mine because I alone chose it. / I own everything about me — my body, my feelings, my mouth, my voice, all my actions, whether they be to others or to myself. / I own my fantasies, my dreams, my hopes, my fears. / I own all my triumphs and successes, all my failures and mistakes. / Because I own all of me, I can become intimately acquainted with me. / By so doing I can love me and be friendly with me in all my parts.

I know there are aspects about myself that puzzle me, and other aspects that I do not know. / But as long as I am friendly and loving to myself, I can courageously and hopefully look for solutions to the puzzles and for ways to find out more about me. 

However I look and sound, whatever I say and do, and whatever I think and feel at a given moment in time is authentically me. /  If later some parts of how I looked, sounded, thought and felt turn out the be unfitting, I can discard that which is unfitting, keep the rest, and invent something new for that which I discarded.

I can see, hear, feel, think, say and do. /I have the tools to survive, to be close to others, to be productive, and to make sense and order out of the world of people and things outside of me. / I own me, and therefore I can engineer me.

I am me and I am okay.

So… twentysomething years later… I think I’m still okay, but I definitely see this poem in a new light. I used to think I could control what parts of my life would define me. Now I know better. Now I know it’s the things we cannot control that truly define us. The instincts and emotions that came with becoming a mom, for example, re-defined everything about me. Andrew’s cancer and Michael’s accident re-defined me at my core.

Now I know Satir’s poem isn’t the meaning of life, but it’s still a damn good piece of advice on how to live it. Focus on what you can control, try to let go of what you can’t. Even on my best days, I’m not very good at this, but I will keep trying. I know it’s the best way to navigate these waters we’re swimming in, especially when the tide brings in challenges we thought we’d never face.

Moms out there, declare your self-esteem this Mother’s Day, you deserve it. Go ahead and say it out loud: “I am me and I am okay.” Yep, I feel stronger already.

Update: It took Andrew a little while to recover from that weird blood infection on the 20^th, and as soon as he was really getting his strength back, he caught a cold that he’s still fighting now. Hopefully it will pass without any fevers or other complications. We had a bit of a concern over declining platelets, but that’s looking better (whew!). Even with the infection and now the cold, his other counts are staying exactly where we want them, which is great news. Michael is ready to put his first year of high school behind him. It was hard, but he did well and I’ve been very pleased with the support network available to us at Pomona. So, all in all, things are good!

———————

Our reign of not being admitted in-patient since Andrew was first diagnosed is officially over. He had his normal chemo/spinal tap treatment Wednesday morning and everything went fine. He was more loopy than usual after the anesthesia, but there were no complications with his port access or the tap. He ate a good lunch, and seemed to be feeling fine. We were home for less than two hours when he spiked a temp of 99.6. Within a half-hour, he was throwing up and the fever had risen to 102. By the time we got back to the hospital, the fever was up to 104, he was a little incoherent, and he had a massive headache.

They’re not sure what’s going on, and until they know more, they want him to stay. It could be a blood infection, so they’re culturing his blood to see if anything grows. Hopefully we’ll know more on Thursday. In the meantime, they’ve pumped him full of antibiotics, fever reducers, and some pain meds. He’s feeling a lot better tonight and enjoying unlimited Xbox access. So… we’re hoping that whatever’s happening is manageable and our stay here will be short and sweet.

It’s never fun being here, but after the afternoon we had, I’m glad he’s in a place where he’ll get whatever he needs if things get crazy again. In fact, under the circumstances, there’s nowhere else I’d rather ring in my 5^th decade on this planet than right where I am.

Andrew was one of about 3400 people of all ages diagnosed with cancer on March 24, 2009. Many are not alive to mark today’s diagnosiversary. Many, many more celebrated the end of their cancer treatment several months ago. Not Andrew – he’s still here, still persevering, still fighting, and still facing 16 more months of chemo and all the crap that comes with it. As has been our routine for the last year or so, he has about two good weeks and two bad weeks a month. When he’s not battling a bug, wrangling a migraine, or choking back nausea, he tries to go to school every day, and about half of the time he makes it for the full day. And the other half… well, at least he tried.

A big part of me wants July of 2012 to get here tomorrow. End this, end it now. But a wise momcologist friend of mine once passed along the best advice – “Don’t wish these years away. I know you want to fast forward to the end, but this is your son’s childhood. Savor it.” (Thank you, Heather.)

And so I will. I can’t promise that I’ll like it. I’m sure that some days I will downright despise it. But cancer or not, Andrew will only be 12 once, and I will not wish this time away. I will savor it, every second of it.

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     March 24th

Last night’s St. Baldrick’s event was very moving, and the stories of kids like Andrew and others who have fought or are still fighting cancer helped to bring more awareness about the issue of childhood cancer, which is very important. The event also put siblings of cancer kids in the spotlight, and I’m so very glad it did. These are the unsung heroes in a family’s fight against childhood cancer. Out of nowhere, their needs seem less important than their brother or sister’s fight to survive. Their activities take a back seat to appointments, fever watches, and hospital stays. The money to do fun family things often gets depleted as families struggle to just keep their heads above water. The siblings seem to fade into the background and somehow their limelight gets lost, though I’m positive no parent would ever intend for it to be that way. Mike and I try so hard not to let it happen, but I know it has, and the guilt of it feels suffocating sometimes.

Not long after Andrew was first diagnosed, when we had been home from the hospital just a day or two, I escaped in a few moments with Michael. I told him how sorry I was that this was happening to all of us, and I told him I was worried about him feeling less important in our family, or second to Andrew. I’ll never forget his response. He looked me straight in the eyes and said, “Mom, I am less important right now, and that’s okay.” It wasn’t okay with me then, and it’s still not okay with me now. But in terms of which son demanded more of my attention and energy, Michael was right – so much of that had to go to Andrew, we just didn’t have much of a choice.

Then, not even four months later, suddenly Michael’s survival became our focus. Now it was Michael fighting to live, fighting to recover, and fighting to regain his place in our shattered world. And even then – in the middle of his own difficult and painful recovery – he would say, “Don’t worry about me, I’ll be fine. Worry about Andrew.” Of course I worried about them equally – in the early days after Michael’s accident, I’m positive I worried about Michael more. But as time went on, the demands of Andrew’s treatment overshadowed Michael once again. We didn’t mean for it to happen, it just happened. I spend as much time as I can just talking with Michael, when I can squeeze myself in to his busy schedule of school, guitar, and “just hanging” with his friends. I treasure every second I have with him, but I know that he can sense the powerful grip Andrew’s treatment has on my psyche, even when I try so hard to push it away.

No matter the circumstances, being the sibling of a cancer kid is hard. Being the sibling of a cancer kid while fighting for your own recovery, seems too much to bear. But Michael has done it, and he continues to shoulder these very heavy burdens every day. He’s strong and courageous – and so very important – in so many amazing ways.

My son. My hero. Times two.