Big T Family Corner


Lookie lookie what we got!

Smiles galore!

(*title in homage to original Tin Grin, Dr. Silcox)

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We walk in and look down in surprise as our feet stick to the floor. My cousin laughs and explains that her little patient spilled Sprite earlier and they’re still waiting for somebody to clean it up. We look at the Tough Little Bird sitting in the bed surrounded by her toys, and she gives us a big smile. The kids join her and they start a game. I sit by my cousin and she updates me on the progress.

Tough Little Bird is 4-years old. Last Spring, because of stomach pains, steadily high fever, all around misery, her parents brought her to the Children’s Hospital where she was diagnosed with a Wilms tumor. One of her kidneys was almost completely covered with the tumor and had to be removed. After one surgery, months of chemotherapy, and a great amount of emotional stress, Tough Little Bird and her parents go home with a reassuring next-to-nothing chance that the cancer would come back. Showing off the scar that stretched across her abdomen, Tough Little Bird went home to stay.

This past April, the pain returned. Recognizing the signs, her parents brought her back to the hospital. They asked for an ultra sound; the doctors did other tests and sent them home. Within a couple of days, Tough Little Bird gets hurt and her parents, concerned about internal bleeding, bring her back. After much argument, my cousin finally succeeds in getting that ultra sound. They discover two more tumors: one where Tough Little Bird’s previous tumor had been and another on her lung. Her parents are angry with the doctors’ behavior and devastated that this was happening yet again after such reassurance that it wouldn’t. Tough Little Bird’s father, in a rare show of anger, blatantly tells the doctors that maybe they’ll do things right this time since they still have the $10,000 bill from the first chemo treatment that ended just a few months earlier when they were told everything was fine.

Two more surgeries and eight more months of chemo and radiation are scheduled. Tough Little Bird gets dots tattooed on her belly where the radiation will be administered, and the second year of cancer treatment begins. One side effect from radiation is sterility. My cousin incredulously asks one of the many doctors how she is supposed to tell her 4-year old daughter that news. The doctor has no answer. Tough Little Bird doesn’t have much of a response, either. My cousin, considering this, realized that for her daughter, this is life as she knows it. She takes it without shock or question. Whereas some people cry and rant and scream, “Why me?” Tough Little Bird simply looks at you steadily, hooks herself up to her various IV’s, and makes herself comfortable on her bed amid her art supplies, juice boxes, and snacks. Her parents learn how to administer shots and monitor vital signs at home, and that sometimes, in order to get answers, being a good hospital parent means badgering the staff until they listen to you.

So now we sit in a $900-a-day room, watching various care givers come in and out and exclaim about the sticky floor. Nobody does anything about it—until the doctor comes in. Sporting a rhinestone-studded ID badge and outrageous cartoon pants, he proudly shows his patient his pink fingernails painted by another little patient. He’s the fun doctor, the one who teases his little bald patients that he’ll come and bite their heads (tickling them with his bushy beard) while they sleep, and Tough Little Bird, ready to match his wit, smiles as he enters. His feet stick to the floor; he looks up at Tough Little Bird’s mischievous smile, then asks just what has she been doing in here?! My cousin tells him. The doctor declares, “I have a mop right here,” and steps just outside the door. My cousin and I look at each other. I gasp, “He has a mop!” and we watch dumbfounded as he mops up the spilled soda, bantering back and forth with Tough Little Bird as he does so. He jokes about this is why he makes the big bucks, waves his pink fingernails at her, and continues his rounds.

My cousin turns to me. “The hospital room alone costs $900 a day. That doesn’t include the medication and treatment. You’d think for that price, we’d get the Gold Treatment.” My jaw drops. $900?! And it takes half an hour to clean a floor? $900 a day, 5-6 days a month, for 8 months of treatment. Add to that the multiple bags of chemo and other solutions Tough Little Bird gets each day, the out-patient treatments, blood transfusions, radiation, medications and supplies to be administered at home. Then the doctors’ (that’s plural doctors) fees. It’s overwhelming. My cousin and her husband apparently earn too much (?!) to qualify for financial help, but they persevere without fear or doubt. What else would they do? This is their child; it’s not optional. It’s not like she just accidentally broke her leg and gets a one-time fix. This disease is not her fault, nor is the lengthy treatment it requires. They’ll pay for it no matter what. So when case workers come to discuss expenses, my cousin simply responds, “Just add it to the tab.”

But perseverance and determination fill the air. There’s no time for pity or pessimism. Since July, Tough Little Bird has weighed around 26 pounds. Standing tall with her bald head, thin limbs, big smile, and firm opinion, she has an attitude more like a mature 30-year old adult than a 4-year old child. Her way of working with what life gives her with no complaints or excuses is inspiring, as is her family’s endurance. My own faith in human nature has increased by witnessing how compassionate and generous others are to people they don’t even know. Life is amazing, miraculous, and yours. Inspiring lessons from one Tough Little Bird.

Summer vacation is slowly disappearing and Fall is making it’s appearance. Your kids have their new back packs full of paper, pencils, notebooks, books, and other goodies, and their days are full of new possibilities. The Back to School season had begun!

This year, we have entered a new atmosphere—junior high school. Full of excitement and unfamiliarity, this new adventure began the weekend before school started with the new student orientation. New students filed into the auditorium, clutching schedules, searching for familiar faces, exclaiming with joy when seeing a friend. After the slide show and explanations from the principal and her assistant, after the fun student body officers and cheerleaders introduce themselves, everyone files out to try their new lockers and search the halls for their classrooms. Among the exciting experiences of the day, everyone learned:

  • the location of the two (only two?!) stairwells and how to maneuver them.
  • that the student body officers are super, incredibly nice and cool and helpful and compassionate and I wish I had known them as students in my classes.
  • that the cheerleaders were sweet, even before they started handing out ice cream, and that they were sweet enough to offer all of the parents some, too.
  • how to actually open the lockers by following this list of instructions: (no, I am not kidding) turn the knob all the way around twice. Start at zero. Turn right past your first combination number twice. Then turn to the first number. Turn left past your second number once. Turn to your second number. As you turn right toward your third number, the lock will tighten or get hard to turn. Take your hand off, get a good grip on the knob, and while you turn, push in on the locker and it will (supposedly) pop open.
  • that everyone, including the principal and some cheerleaders, were having problems opening the lockers
  • that the student body officers were the ones who knew the magic touches to opening said lockers. (Seriously, folks. Why do we need more complication in life? We could casually flip our lock right, left, right, breath on the thing while touching it with one finger and it would open magically. Progress, indeed.)
  • how to recognize the sound of the PA system and the voice of the office staff during the few announcements made throughout the two hours we are there. Important announcements such as: “Could we please get a custodian to locker number 2308?” “Could we please get a custodian to locker number 2045?” “If anyone has a top locker and would like to switch with someone who has a bottom locker, please come to the office.” (Thank you dear fellow student who requested a switch. Some of these dear newbies did not have enough leverage to open the top lockers. Their squeal of excitement was justified as their new, lower locker popped open at their touch.) “Students, if you want some more ice cream, the cheerleaders have it in the office. Please come and get some more!”

My favorite part of this day was seeing my child surrounded by a school full of her friends and fellow schoolmates, something I lacked a bit during my first few months of junior high school. The new school, new atmosphere, new people could have been much more overwhelming than it was, but I clutched at the couple of familiar faces I did know and made it through. This day, I was so happy to see so many students I recognized from my child’s school. Both those just entering junior high and their siblings in the upper grades. (Siblings! Which means more allies!) And it was reassuring both for both me and my new junior high student to know that so many of those students we grew up with throughout elementary school would be all together discovering this next adventure called junior high school.

Along with all of that, we parents and older siblings tried to help give tips on how to maneuver the hallways, how to pack what where, and remind the new students that they’ll only have five minutes to get to class so move it! And reassuring them that, yes, you do have to hike it from this end of the building to that, but don’t worry; you’ll make it. Because everyone, since the beginning of school all those decades ago, has had to hike/sprint/book it from one end of school/campus to the other in five minutes/three minutes/a heartbeat and make it to class. On time. Prepared. And preferably alive. And we did it! So can you! Rah rah go team!

There are still adventures in elementary school, too, this year. How fun to see that your little sweetie has the same teacher you had in elementary school, and to find out that teacher is still the exciting, smiling, exuberant teacher that you remember and that made her one of your favorites. How exciting to attend back-to-school night and see the desks piled high with papers, name tags, and goodies, the walls covered in fun posters and lists, the desks arranged just so, waiting for the students to pile in. Volunteer sheets cover the walls—parties and art and music—reminding us how exciting our child’s life in elementary school is and how lucky and welcome we are to have the chance to take part in it. I love the busy and simply fun atmosphere of elementary school where learning is a joy and thrill that happens every day with cutting and pasting, learning a new song, watching a video, and play. Life is meant to be enjoyed and filled with laughter, happy squealing, brightly colored poster boards, and recess.

The magic of a brand new school year has begun. Another season of watching your children grow, expand their minds, and share their new joys and discoveries with you. Sharing smiles with them as they travel through on their familiar, yet annually new adventures. That amazing and magical time called school which seems to last so long yet is simultaneously so fleeting. The magic and wonders of learning, the glories of childhood. Welcome back to the adventure!

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