A Picture of Grace and Resilience...

Dearest Maddie,
So it's been a little while since I wrote, not for lack of interest, sometimes life gets complicated. You know a few things about that, don't you, Maddie?!
So, let's catch up...did you know that two days ago was the four month anniversary of your first major surgery? These four months flew by...NOT!! Some days seemed like years. I can't fathom what they were like for you, or your Mommy and Daddy, and Josie! Your big sister, Josie, has been very brave during all that's gone on. Your world, and hers, were toppled!

Maddie, your resilience and determination are inspiring! You are a constant example of God's love and fidelity. Every time I see your radiant smile, reflect upon your horrific journey, or try to comprehend your remarkable progress despite the obstacles encountered, I am rendered speechless. Trust me Maddie, all who know me will attest...speechless is not in my vocabulary!

Walking for a cure as your treatment ends

Dear Madeline,

In a couple of months, we'll be doing something very special in your honor. As it happens, we will also be doing it after your last round of chemo but before your final treatment evaluation. We will among the many participating in the 2011 Baltimore CureSearch Walk on September 10th. The CureSearch Walk celebrates and honors children whose lives have been effected by childhood cancer, while raising funds for lifesaving research. Money raised by CureSearch for Children's Cancer funds the Children's Oncology Group, the world’s largest, cooperative children’s cancer research entity. The Children’s Oncology Group research has turned children’s cancer from a virtually incurable disease 40 years ago to one with an overall cure rate of 78% today. Their efforts (and those of their predecessor groups) are the reason why kids with Wilms' Tumor (like you) have a 90% chance of being cured. Many years ago, the chances of a cure for Wilms' Tumor patients were less than 50%.

We're walking to raise money for research that literally saves lives, so that all children with cancer may have such tremendous chances for not just mere survival, but for long, healthy, active, and fulfilling lives. We're walking with gratitude for the incredible advances that transformed treatment protocols and all but ensured your survival from the start. We're walking with hope that future research will reduce or eliminate entirely the need to subject childhood cancer patients like you to chemotherapy and radiation treatments, research that could mitigate or prevent the horrible near term and long term effects that may arise from those forms of cancer treatments. We're walking to honor you, and the inspirational fight and resilience you've displayed throughout your treatment.  We're walking to celebrate all who have been cured and to honor those who have lost their battle. We're walking for all of the pediatric oncology patients and families that we've befriended throughout your journey.

This is a big deal to us, Madeline. Our lives were forever changed on February 24, 2011 when Mom rushed you to the emergency room. When the words "cancer" and "oncology" were first uttered to us about 15 hours later, we had no idea what the future would hold. I think society in general has been conditioned to think of a cancer as a brush with death, if not a death sentence in itself. The doctors played everything very straight with us but what they told us about your diagnosis - and the cure rate - gave us tremendous hope, rays of light in our darkest moments. We owe these miracle workers a hefty debt of gratitude, and we have been called upon to lend our efforts to support the search for a cure for all kids with cancer. You'll have no memory of our first walk but I hope that these walks make an impression on you in the future, one that you will call to mind when your set about your life's work.

Love,
   Daddy

Great day at clinic

Dear Madeline,

Our prayers were heard and answered yesterday. Your clinic appointment yielded terrific news all the way around. Thank God!

Neutropenia? Gone. Your absolute neutrophil count (ANC) roared back from 10 to its usual place in the 1500s. This meant that you could go ahead and receive your chemotherapy treatments of vincristine and doxorubicin as scheduled. What a relief to know that your infection risk was momentarily minimized, and it was nice to know that we wouldn't be making a trip back to clinic later in the week for a delayed chemo treatment. You'll head back in several days only for a quick check of your ANC to ensure that it doesn't bottom out again before your next treatment.

Your Echocardiogram and EKG results from last week were in. All normal. And why run those tests to begin with? The doxorubicin is known to have adverse impacts on the heart. At the dosages you've been receiving, no one was super-concerned to start with, but the tests are done to be sure you weren't being harmed.

What the day brings

Dear Madeline,

Today, we hold our breath. Your have your clinic appointment today and are supposed to receive  chemotherapy (vincristine and doxorubicin). That will all depend on your counts, which were pretty darned low last week. But we hold our breath not just because of your blood work results. We hold our breath because of the doxorubicin, and because of the way it was administered to you last time, because of the way that it burned you and ended up putting you in the hospital for 10 days last time. We hold our breath because we don't know which line they'll use - your PICC, or your port. If all goes well - and really, why shouldn't it? (maybe don't answer that) - we'll be done with all of that before you had a chance to know what was going on.

I'm quite hopeful that the doctors will want to re-access your port. I know that if they do, they will need to inject a medicine to dissolve all the gunk that has built up in there since it was last accessed. That could take a while. If they are successful in doing so, if they can get your primary central line to give a blood return and to flush, that will mean success. It will also mean that we should be able to remove the PICC from your arm, bandage you up, and get you living life like a baby should - without bathing and clothing restrictions (goodbye, long sleeves!) So, we're hunkering down for a long day and keeping hopes high that it is a productive and otherwise uneventful one. Frankly, any clinic visit that does not result in a hospital stay anymore is a good one. So let's hope for the good!

Love,

   Daddy

A Meaningful Fathers Day

Dear Madeline,

It was only a year ago that Mom and Josie and I anxiously awaited your arrival. Mom was very pregnant with you as we all celebrated Fathers Day together. It was a special day, and I so wished that you had already made your arrival, but that was not to be for another 3 weeks.

I foolishly thought I was starting to get the hang of fatherhood; after all, Josie had already put us through the mill with some early health scares, with not sleeping through the night, with all the drama that can come with 12 hour car rides. Ha! All that was kids stuff compared to the last 13 months.

Perhaps I'd become adept at the mechanics of fatherhood - ceding control of the television, reading the same book over and over until it could be recited by memory, getting home from work in time to have dinner as a family, changing diapers, taking over bath-time duties from time to time, and handling the ever-protracted bedtime rituals - but I still had (and have) a long way to go in mastering the virtues of fatherhood. Immersion learning began the day you were born.

ANC low low low, or Count to 10

Dear Madeline,

You’re amazing. You’re also very vulnerable right now. Mom took you to Hopkins yesterday for an echocardiogram and an EKG to evaluate any impacts of the chemotherapy treatment on your heart, and everything seems to look okay. You also visited the pediatric oncology clinic for blood work to check your counts. The results weren’t exactly optimal.

Your red and white blood cell counts were okay, but your absolute neutrophil count was shockingly low. Your ANC has hovered around the 1500 range throughout your treatment; yesterday, your ANC was 10. In short, this means that your body has very little ability to fight off an infection if you became ill.

Mom and I are on edge. If you fall ill, we’ll need to bring you back to the hospital for immediate evaluation, and likely for another extended stay. Fortunately, you seem to be in good health right now and we’re praying that your good health endures. Stay strong, sweet pea.

Love,

   Daddy

A Hospital Reunion

Dear Madeline,

We seemed to hit a sweet spot for just a little while there, didn’t we?  There were actually a few weeks when everything was going just great.  You starting sitting up and crawling around on your own, and you’re now flashing a nice little set of teeth and a beautiful smile.  Mom and I had waited a long time for a stretch like that.  I guess I got too caught up in enjoying the time with you that I neglected to write to you about it.

We didn’t get to enjoy it for very long, though. On May 10^th, just as you were heading into a nice 2-week break from chemotherapy treatments, we encountered a big problem.  That Tuesday, you were set to receive 2 chemotherapy drugs: the first was the vincristine that you get every time you’re in the clinic for treatment, and the second was the doxorubicin that you get only once every several weeks.  It was during your doxorubicin treatment that we encountered the problem.  The needle that fed the IV line into your port somehow slipped out of place, spilling the doxorubicin into your flesh instead of your central line.  The result was a significant burn, and you sure let everyone in the clinic know about it.  I guess there’s a reason that the “doxo” earned the nickname “Red Devil.”