APKY/AMP: Hello Mary, it’s great to have you here. And thanks for your interest in AuthorMeProfessionals. To proceed straight on, please tell us something about yourself and how you came to be a writer. What inspired you to write your first book?
I am a veteran journalist turned high school English teacher. To let my father tell it, I write my life away, so in that regard, I've always been a writer. The inspiration for my first book The Summer of Superheroes and the Making of Iron Boy is my now-9-year-old son Quentin and now-4-year-old daughter Jory, the subjects of the book. Technically, this is not my first project, just the first I completed and first I've had published. That's probably because this story was too phenomenal to keep to myself. It's the 18-month journey our family endured with Quentin's leukemia battle and his life-saving and miraculous gift of life from his sister, who was his bone marrow transplant donor and an unexpected pregnancy.
APKY/AMP: It already sounds like a very emotional story. In what genre did write this and what do you generally write? Have you considered other genres?
In this case, the story is narrative nonfiction. But, my first project and the one I'm working on now is fiction, both loosely based on my real life.
APKY/AMP: The quasi autobiography, I think, happens with all of us writers. Tell me, is there a message in your novel that you want readers to grasp?
There are several messages. God is good! Bad things that happen in your life usually work out unbelievably. You have to believe.
APKY/AMP: You’re so right, Mary. So, what have you had published to-date?
I self-published The Summer of Superheroes and the Making of Iron Boy two years ago. It has been picked up by Whiskey Creek Press, an e-book publisher, and will be released in February 2013.
APKY/AMP: Yay! We at AuthorMeProfessionals will keep all fingers crossed for The Summer of Superheroes! J Do you have any advice for other writers?
Be true to your craft. Approach this like you do your real job or any other business venture you would embark on. Never stop writing.
APKY/AMP: So true; never stop no matter what. And why should we buy your book, Mary?
The Summer of Superheroes and the Making of Iron Boy is intended largely for three audiences – parents who have children facing a similar plight as our family; parents who are considering cord blood and placenta blood collection and banking; and children’s hospital stem transplant coordinators. But really, I believe it’s a story that could be marketed toward anyone seeking hope and encouragement. Parents of children who are suffering from a potentially life-threatening disease, especially a blood disorder, want this book because it will offer them a glimmer of hope and the realization that cancer does not have to be a death sentence. Parents who are considering cord and placenta blood collection and banking will want to know about a tried-and-true, tangible case study, especially considering the cost associated with this practice. Children’s hospitals will benefit from having their blood disorder patients learn about this remarkable occurrence. Additionally, it will take some of the guess work out of bone marrow transplants for people who are considering becoming a donor.
Basically, readers will take note of all the well-placed miracles that occurred during Quentin’s sickness. The book will offer them hope and encouragement in the midst of their own tribulation.
The uniqueness of the book is that the subject is the world’s first-ever cord AND placental blood transplant recipient. Also, it’s told from a first-person point of view, so it gives a personalized account of this medical breakthrough. Finally, it’s such an amazing story of well-timed blessings. Ours doctors said to have a sibling already on the way be a match, much less the perfect match she was, is the equivalent of winning the lottery. Further, it’s very rare for a match like that to be made from boy to girl or vice versa.
Simply, the rarity of our miracle is what would attract readers.
APKY/AMP: Well, you’ve convinced me, Mary. Over to you, parents and readers! How much of the marketing do you do for your published works, Mary, or indeed for yourself as a ‘brand’?
To be honest, I've done all of it. I hope that will change somewhat with the publisher.
APKY/AMP: With a publisher, something will definitely change. And have you won or been shortlisted in any competitions and do you think they help with a writer’s success?
I haven't won because I haven't entered any. I guess that's a shame to admit, but first my time was focused on writing the book. Then, my focus was on getting it prepared for publication. Next was trying to find a traditional publisher. Now, my time is consumed with working on the next project. Also, as an English teacher, my time is limited because of the number of essays I have to grade. I'm meticulous in my grading, as I'm trying to help young writers hone their craft. I suppose any accolade makes a writer sound more accomplished, but it would have to be a Pulitzer or Newberry or something of that caliber to really speak to a writer's success.
APKY/AMP: You’ve forgotten our all-powerful Nobel Prize for Literature! J Now then, is there a special place that you prefer when you write?
In my head, it would be in a rustic cabin in the mountains during a hard snow with a fire roaring in the fireplace. But, it's just at my computer in the corner of my living room.
APKY/AMP: Hey, you just made that rustic cabin and snow appealing to me, the “estranged” African. So please reveal: Do you write under a pseudonym? If so why and do you think it makes a difference?
I don't. Except to camouflage one's self from controversy, I don't think I've ever understood the point of a pseudonym.
APKY/AMP: Wait till your name is Akinyi Prinzessin von K’Orinda-Yimbo! And do you have an agent? Do you think they’re vital to an author’s success?
I don't. They certainly help if they're willing to take you on before you're well-known, which many don't. I figure if I ever make it big, by that time, I won't need an agent; I'll have already done what an agent would do to help me break through on my own.
APKY/AMP: Precisely. I wonder what happened to days when agents and publishers alike searched for talent to promote. Anyway, what are you working on at the moment / next?
I'm working on a novel about the estranged relationship of a father and daughter. The father's terminal illness will be the bridge that leads to forgiveness.
APKY/AMP: Another one that sounds very emotional. Mary, do you manage to write every day?
I don't. If I worked a true 9-to-5 and left work at the door, I would.
APKY/AMP: I understand you so well. Nevertheless, what is your opinion of writer’s block? Do you ever suffer from it? If so, how do you ‘cure’ it?
Writer's block is sort of laziness to me. Traditionally, writer's block is deemed as not being able to come up with any material. I can't say that's ever happened to me. I might have been stumped on parts, and in those cases, I just went to a different part, wrote that, and eventually came back to the part I left out on. I do suffer from laziness. Getting started is such a hard thing for me. I don't know why. Eventually, I just do what I tell my students when they are writing -- just start. To cure it, or a better word would be prevent it, I always try to stop writing in a good place. By that I mean a juicy place, a place where I'm dying to flesh out.
APKY/AMP: You know what; you’re not the first writer to tell me they think writer’s block is some sort of laziness. Do you plot your stories or do you just get an idea and off you are with it?
A little of both.
APKY/AMP: Okay, I’ll take that. So, do you have a method for creating your characters, their names and what do you think makes them believable?
I don't have a method. Sometimes, that makes me question if I know what I'm doing as a writer. Mostly, I think if I didn't, the ideas wouldn't be coming to me. I think they're believable because there's always a little reality, courtesy of the person they're patterned off of, in them.
APKY/AMP: Now, there’s a good point. And who is your first reader – who do you first show your work to?
My first reader is my little sister Christine, because in everything, she is honest. She's the person who will not automatically take my side when I tell her out how someone snubbed me. She's also the person who will tell me to cut the crying out and solve whatever problem I'm having. She was my delivery coach/cheerleader when Quentin was born. But, most importantly, she's the person who stayed at her desk after 5 pm on a Friday when I sent her the first chapter of my latest project because she couldn't put it down until she was done. And, she admitted it had her in tears.
APKY/AMP: What a precious little sister. Do you do a lot of editing or do you find that as time goes on your writing is more fully-formed?
I do editing in the sense that because it takes me so long to complete a project, I don't always remember the order of things I've written. But if you're speaking of revision, even though my writing is fully-formed, revision always, always, always, makes it stronger.
APKY/AMP: And that’s the truth. Do you write on paper or do you prefer a computer?
I used to write on paper, but now I use a computer. It's not that I prefer it; it just makes more sense to do it electronically. However, because I don't have a laptop, when I meet with my writer's group, I have to use paper. This makes me happy. I'm old school at heart.
APKY/AMP: Yours truly here is old school too. What point of view do you find most to your liking: first person or third person? Have you ever tried second person?
First person. It just seems more real. I've never tried second person.
AMP: How about books in general: What do you like to read?
I like to read well-written work. I know that's vague. But, it's honest. Otherwise, I feel cheated. I like stories that move me, that leave me feeling better because I've experienced it.
APKY/AMP: That’s not vague but true, Mary. Emotions, especially conflicted emotions grabs readers. What do you do when you’re not writing? Any hobbies or party tricks?
I love to read (when I have the time, which means not during the school year). My kids and their active social calendar keeps me busy. I like to shop. And, I love music and movies. Spending time with family and friends is essential.
AMP: Now tell us where we can find out about you and your work?
My Web site is www.ironmommy.webs.com. I have, what people tell me, is a pretty funny blog about kids' antics that I post there. Also, I'm Facebook.
APKY/AMP: Great. Mary, is there anything else you’d like to mention?
Already, I have been successful in securing sales in more than 10 Louisiana parish library systems and placement in four independent Louisiana bookstores, as well as a mom-and-pop pharmacy. Additionally, my book has been featured on New Orleans’ WWL-TV Ch. 4, WDSU Ch. 6 and FOX TV Ch. 8 and Baton Rouge’s WAFB-TV Ch. 9 and The ‘X’ Zone Radio Show and in The (New Orleans) Times-Picayune, The (Baton Rouge) Advocate, The Daily (New Iberia) Iberian and New Orleans’ Gambit magazine, as well as in a national television ad campaign for LifeBankUSA that ran on TLC, E! and Style earlier this year. Also, I participated as guest panelist for the Livestrong Survivorship Luncheon as part of Regional Symposium on Minorities, the Medically Underserved & Cancer in New Orleans in November 2010. Two springs straight, my former school, at my behest, hosted a Be the Match! bone marrow registry drive.
APKY/AMP: Wow, that makes an impressive résumé. Thank you, Mary. I now invite you to include an extract of your writing:
The Summer of Superheroes and the Making of Iron Boy
If you’re ever planning to have a life-threatening illness as a child, leukemia is the one to have. According to The Leukemia and Lymphoma Society (LLS), leukemia is a malignant disease (cancer) of the bone marrow and blood. It is characterized by the uncontrolled accumulation of blood cells. Though it’s a type of cancer, it is one of the most curable childhood diseases. The five-year relative survival rate has nearly quadrupled in the past 48 years for patients with leukemia. In 1960-63, when compared to a person without leukemia, a patient had a 14 percent chance of living five years. By 1975-1977, the five year relative survival rate had jumped to 35 percent, and in 1996-2004 the overall relative survival rate was slightly above 50 percent (51.2 percent).
And, if you decide on leukemia as a child, your best bet is acute lymphocytic leukemia, or ALL, one of four types of leukemia. Overall, relative survival rates from 1996-2004, according to the LLS, for patients with ALL was 66.1 percent overall and 91.2 percent for children under 5, as compared with chronic lymphocytic leukemia, or CLL, 76.2 percent; acute myelogenous leukemia, or AML, 21.3 percent overall and 55.2 percent for children under 15; and chronic myelogenous leukemia, or CML, 46.7 percent.
But the thing is I wasn’t planning on having my perfectly healthy 4-year-old son Quentin – whose total past medical history included antibiotics for one ear infection and three stitches to his right pinky finger after a tangle with a barstool (he lost) – to be diagnosed with leukemia. But on July 12, 2007, following weeks of mysterious aches and pains, he was. Despite the ominous diagnosis, my son had a larger being than “the big C” working in his favor – God. This book is the story of how God’s grace and mercy and nothing less than a windfall of miracles saved Quentin’s life and transformed him into “Iron Boy”. This book is also meant to show you how God’s grace and mercy can work in your life, too…if you will believe.
I guess I should begin, not with the diagnosis, but with Quentin’s birth.
Despite the mountain of photographs I have of Quentin – both homemade and professional – my all-time favorite still remains the one taken at the hospital the day he was born. There is no other way to say this, so I’ll just spit out. He was sooooooooo adorable, sooooooo cute. Someone once asked me if I thought my baby was cute because he really was or because he was my baby. Truthfully, he was! I’m real enough to say that if he hadn’t been, I would have realized it, chalked it up to the struggle it takes any child to get here and prayed the circumstances would change in a few weeks. But I didn’t have to wait. He was a cherub from Day One. He had a head of silky, wavy, coal-black hair, which proved the heartburn theory, and a little button nose that looked good enough to pinch off and pop into my mouth. And those eyes! Two shining, liquid balls that bore into me and made me want to sit up straight, eat all my vegetables, learn a new language, just do everything right! I swear the way he looked at me, it felt like he was scrutinizing me, checking me out to see what he was working with and whether I was worthy of taking charge of his life.
It was like he already knew me and was waiting to formally make my acquaintance. I know I had been waiting to make his – nine months and then some. He made me wait so long, he even missed his own “birthday”.
Quentin was actually due the first week of March 2003, but he didn’t show up. Another week went by, and he still hadn’t seen fit to make an appearance. In fact, at my next appointment, my doctor gave me the sad news that I wasn’t even dilating. To cheer me up, he said he would induce me at the end of the next week if Quentin hadn’t made any progress. The supposed-to-be-hopeful news unleashed a sea of tears. Don’t get me wrong! I was happy to be pregnant. It’s just that I would have been happier to become a mother and drop the medicine ball I was carrying under my shirt.
My doctor must have noticed my desperation. Standing waist-deep in my pool of tears, he changed his mind and asked me if I wanted to do it Monday. Thinking he was referring to my next appointment, I tearfully sobbed out a no. But then it hit me and I realized he meant “it”. Did I want to have Quentin Monday? Does Popeye love spinach? Hell, yeah! I shook my head so hard, I thought it was going to bounce off my head and roll into a corner. I was geeked! Plus, I thought it would be kind of cool to deliver Quentin on my brother John’s birthday, especially since he would be serving as godfather. Wouldn’t that be the gift to top?
By the time Monday came, I had my “schedule” all worked out. Hospital arrival at 6 a.m. Check in and dress by 7 a.m. Deliver Quentin by 8 a.m. First feeding at 9 a.m.
Silly, silly me! March 10 was the quintessential example of Murphy’s Law. Everything that could go wrong did!
First, I felt a little like the plague. I didn’t get nearly the attention I deserved on account of a teen-aged girl who was in labor ahead of me. A child having a child, who couldn’t hang with the very adult situation she found herself in. I wanted to go over to her room and scream for her to shut up and act like the woman she had formerly thought she was. Since I AM an adult, I reconsidered. She probably wouldn’t be likely to take advice about being a grown-up from a grown-up who herself wasn’t acting awfully grown up.
Instead, I suffered in silence until the nurse we were sharing made time to see me. It would be these hide-and-seek absences the whole day, I quickly discovered.
Things picked up a little when one of the nurses came to hook up my I.V. Okay! A little action! Finally, I was being shown some medical attention. My glee was short-lived.
I’ve always been told how small my veins are. That day, they must have been invisible because this amateur nurse stabbed the back of my hand unmercifully several times before she was willing to admit she couldn’t find it. It would have been nice if she had come to that conclusion BEFORE she murdered my hand. A more experienced nurse came in and nailed it on the first try. The younger nurse refused to look at me. She obviously didn’t want to find out the hard way if looks could kill. But, I sure did burn a hole in the back of her retreating head with my laser eyes.
Okay, I’m cooking with gas, I thought, when they moved me to my room and inserted the first inducing tablet. Surely, Quentin would be here at any minute.
Wrong! Wrong! Wrong! That should have been the first hint-and-a-half that the kid would have a mind of his own. Was I ever right?
Christine, my little sister and official delivery cheerleader, and I wasted away the morning playing Scrabble. An innocent game nearly came to blows when I added a “y” to Christine’s “hunk”, and a nosy and ill-informed nurse commented on it while she was supposed to be taking my blood pressure.
That was the most action of the morning.
My anxious friend Dawn Joseph came on her lunch break. I was glad I wasn’t the only one who expected Quentin to have made his grand entrance by then. She tried to hide her disappointment, but it was written all over her face. As a peace offering, so I didn’t feel like I was playing second fiddle to an as-yet-to-appear baby, she handed me a bag of bubble gum. Yeah, baby! I figured I’d smack back on the sugar as an even-Steven exchange for not being able to eat anything. Not! The nurse came in at that precise moment and reminded me that gum, technically counted as food, and therefore, was off-limits, too. Dawn and Christine looked at me, looked at each other, looked at the bag and proceeded to help themselves. Now, what kind of mess is that!
I was starting to notice a pattern with Florence Nightingale, too. It seemed like her breaks from her wilding-out teenager mom always coincided with my few opportunities to have a little peace and happiness.
She even interrupted my husband Corwin and my quiet time later when he came to relieve Christine. Just because we had the curtain drawn, she thought we were doing something “we had no business”, as she said. First of all, unlike some people I’ve mentioned, I was way old enough to have business, and so was my husband. Second, that should be obvious since I was up in that joint anyway because of “business”. Third, I bet she wasn’t keeping tabs on her teenage mother like that.
Anyway, like the morning, most of the afternoon went by without anything notable to speak of. Just waiting.
They did bring me another inducing tablet, which Quentin also promptly ignored. Dude is stubborn as hell, I was thinking.
By 8 p.m., the doctors were ready to abandon this tablet-inducing method and go for the gusto. It took a hot minute, but finally, some expert professional advice. They decided to switch to an IV drip that was supposed to shoot Quentin out of a cannon. They offered me an epidural, which I accepted. When the drip kicked in, the contractions were going to start coming so quickly and fiercely there wouldn’t be another chance to give me the shot to the spine without possibly paralyzing me, they claimed.
There was still time left on the clock to have Quentin on John’s birthday after all. If this drip was anything like they were promising, I would.
When they came to check on me an hour later, I could tell by the way they were talking in hushed whispers and scratching their heads that it was NOT on and popping. I was totally unprepared for the devastating fact that I was no more dilated than when I first arrived. I was on the verge of some serious tears. Turned out the drip was so lame, my epidural would begin to wear off before I went into labor, and they’d have to give me another one in the middle of the night. So much for the theory of now-or-never for an epidural.
Plan C was to manually break my water bag, using something that looked suspiciously close to a turkey baster. What is with the medical profession? This reminded me of the time a dentist extracted my tooth with his fingers. Aren’t there any stainless-steel, surgical-looking equipment to use for these kind of procedures?
Meanwhile, Corwin was freaking out. He was skating on thin ice with me after the Popeye’s fiasco. Yes, he did bring my absolute favorite fast food to my hospital room…for him and Christine’s dinner. Then, they sat on each side of me, swapping sides of mashed potatoes and gravy and Cajun rice over me, just like I wasn’t there. It had the distinct feeling of being at your own birthday party, but everyone else was getting the gifts. So, to get him out of my hair, I sent him home. A, it didn’t appear as if Quentin was going to show up anytime soon. B, it wasn’t like Corwin was going into the delivery room with me anyway.
I had already sent Christine home to rest, and as much as to keep her from being fired, too. So, it was just me and the crazy night-duty nurse. By this point, I was exhausted. Funny how doing long periods of nothing can have that affect on you. And, I cannot lie. I was grouchy and definitely not in the mood for her stupid jibber-jabber. But, she just kept talking. Literally, would not stop making sounds come out of her mouth…EVER. I swear I wanted to jump out of the bed and strangle her into silence, but with the epidural in high-gear, I could hardly move my shoulders off the pillow. I just wanted to go into labor and deliver Quentin, but at that point, I would have settled for a peaceful sleep.
However, this mad woman would not shut up. I might not have minded if she had been talking about something interesting, or better yet, if she had been talking while she worked. Like how about she come and turn me over like she promised, instead of rushing in when my IV machine started beeping like it was about to blow up because she let it run dry? Or how about she come and teach me to breathe like she promised?
So, like I said before, Quentin’s “birthday” came and went without him being born.
Somewhere in the middle of the night, I turned things over to Quentin. This is the same defeated approach I would take many more times down the line, I realized. I figured he had to come eventually, and if he continued his little game, maybe the doctors would actually take command of the situation.
I drifted off to sleep the best I could with no one to reposition two legs that felt like logs. I was only vaguely aware of the nurses and doctors coming in through the night, noting that my contractions were coming so urgently now that the lie-detector-looking machine, which was recording them, was going off the chart. I couldn’t join in their excitement because, for one, I didn’t feel anything, thankfully. Second, I had had my chain yanked too many times already to allow myself to get all worked up.
By 4 a.m., they were pretty sure it was the real deal. I was a little skeptical, but not enough to risk Christine missing everything. I would never hear the end of it, especially since she had taken off from work and flown in from Dallas to be my right-hand woman. Really, she wanted to see him coming, which I could have had her do without, and she wanted to cut the cord. So, I did call her and Corwin an hour later. I told him not to come until we got an official confirmation. My nerves were too bad to contend with Christine’s overzealousness and his weak stomach.
Unfortunately, my own doctor didn’t make it in time. But, Christine rushed over, making it there just before I was put on, no I mean, before I had to scoot over unto the gurney as best as I could with a huge belly and a dead body. This was just before 6 a.m.
I was in the delivery room at 6 a.m. sharp. The irony that that was the exact starting point a day before was not lost on me. Oh, so this little one will have a sense of humor, will he? (I swear, now, I’m raising the next Kevin Hart. That, or I have missed out on some serious money to be collecting from SSI.)
Apparently, Quentin felt he had wasted enough time, because he got down to work. Admittedly, I was the one holding up the show now. I couldn’t breathe correctly to push him out thanks to my stupid nurse. This sad fact made me start crying on the table. Poor Quentin! What kind of mother could get something like this wrong! Well, I guess I would certainly forget to scald his bottles or change him on time. I might even forget him at school. Loser!
Good thing I didn’t give Christine her pink slip. She took command of the situation, coaching me through breathing, threatening to slap me if I didn’t pull it together and checking “down there” to give me progress reports. She was a drill sergeant, cheerleader, and Dr. Phil all rolled into one.
“He’s coming! He’s coming! I see the head!” she screamed.
I got pumped up, and thought to myself, I’m not letting my baby down. When I made up my mind to do it right, I started doing it right. I figured out the breathing-and-pushing routine.
But my heart stopped in chest when the doctor said Quentin’s cord was wrapped around his neck.
“Please, God! Take care of my baby! Make me strong enough to deal with all the adversaries to come. But please take care of my baby right this moment, and I promise to serve you all the days of my life,” I prayed silently. In that exact moment, I had an epiphany. I was no longer going to be living life for myself, but for this child, this blessing God saw fit to bestow on me even though I know I didn’t do any remotely close to deserving him.
With that squared away, the doctor removed the cord with ease, and Quentin popped out at 6:35 a.m.
The nurse whisked him away to clean him without giving me a chance to hold him. I wasn’t about to spoil the moment by complaining. Knowing he was here safe and sound was enough for me just then. Besides I didn’t want to embarrass Quentin or have him thinking I was crazy on our first meeting. I only wanted to please him and make him unbelievably happy, like he made me.
The nurse rolled him over to me in an incubator. Quentin and I watched each other intently as they cleaned me up. I swear I had always enjoyed my life, but suddenly I couldn’t remember what it had been like before Quentin became a part of it. It was like my mind was a chalkboard that got erased.
I say all this to say, because of the shock of Quentin’s diagnosis, I wondered why God would give me such a beautiful baby, such at irreplaceable character in my life, such a reason for waking up in the morning if he wasn’t going to let me keep him.
Then, I had another epiphany, directly connected to the first one. I thought back to that prayer I had whispered on the delivery table. The one when I had the foresight to ask that he make provisions for me in all my battles on Quentin’s behalf. And I was reminded of how he’d done the same for Abraham when he was preparing to sacrifice his son Isaac to prove his faithfulness to God. Hadn’t I promised I would serve him and believe him for the best? Wasn’t Quentin’s diagnosis sort of the same as Isaac’s altar?
Even in the wake of what we were facing, I thought, Wait a minute! Maybe he is! Maybe he is going to let me keep him!
That’s what I decided to believe. If I’m honest with myself, I know I probably believed that because it was so much easier to latch onto than the alternative, which ended with Quentin in a mercilessly tiny pine box, even though I’d be lying if I said I didn’t think about that, too, sometimes. Over the course of the next 18 months, there were quite a few times I cried my little heart out as I watched a stunned image of me stand for hours in the rain over Quentin’s casket, which the groundskeeper would have to wait until the weather cleared up to lower down. Or the following days I’d spend strewn over my bed because I didn’t have the strength to get up in the morning. I’d always stop myself at this point because it was too sorrowful to look down that road any further. Instead, I’d just jump back on base. You know how you played “tag” when you were a child, and you always had that safe haven to make it back to keep you from the person who was “it”? Well, that’s what believing Quentin would make it was for me – base where thoughts of death couldn’t catch me.
Now if you thought I was excited about the Fourth of July, you will never believe how anxiously I awaited the arrival of July 12, 2008. And when it came, I had myself a funky, good time dancing on the devil’s grave. I did a series of back flips and cartwheels and shouted a string of “Take that, devil!’s” and that and that and that and that.
Let me get you in on the shouting, too!
July 12, 2007, 7 a.m.ish: Quentin was opting to go to his grandmother instead of Summerfest camp because his legs were hurting so badly.
July 12, 2008, 7 a.m.ish: Quentin was at Corwin’s boss’ camp on Lake Palourde, waking up in his sleeping bag, tackling Jory to the floor (and she was loving every minute), rooting for Daddy who lost to Mama in a game of pool, getting set to go fishing in the Nemo swim trunks bought for the beach trip we never got around to taking the year before, with his Spider-Man rod. “Fishing” lasted about 25 minutes. Nothing was caught, but he was “glad to get out of the house and be on ‘cation.”
July 12, 2007, 1 p.m.ish: Quentin was confined to his bed, screaming in pain at the thought of walking to the bathroom to use it, waiting on his zillionth doctor’s appointment that summer, changing his mind about being the ring bearer in John’s wedding that Saturday because it meant he was going to have to walk, although that had been, along with Summerfest, what he had looked forward to all summer.
July 12, 2008, 1 p.m.ish: Quentin was refusing to eat his “spicy” pizza and exclaiming that my insistence he do so was the reason he never wanted to come to the camp. (Perhaps, I’ve never shared with you how fickle Quentin is.)
July 12, 2007, 3 p.m.ish: Quentin was at the doctor’s office, seeing the first doctor who seemed to really care.
July 12, 2008, 3 p.m.ish: Quentin was enjoying the camp again (Oh, you see for yourself how fickle he is, do you?) and taking a final stab at fishing (lasted a good 15 mins.), turning down microwaved ‘smores and not taking my word that camp is not camp without the camp cult classic, making plans to come back to camp in the winter to use the fireplace, swearing again it was “good to get out of the house and be on ‘cation”, wishing we were staying another day. (Extremely fickle? You don’t say.)
July 12, 2007, 6 p.m.ish: Quentin was receiving news from the doctor that she had made provisions for him to be admitted to Children’s Hospital that night and not a minute later because his platelet count was so low, he could bleed out from the smallest nick of a cut.
July 12, 2008, 6 p.m.ish: Quentin was visiting 90+-year-old Big Maw-Maw, who was fawning over how good he looked, though somewhat worried about why he was wearing the mask. (Because of her age, we tried to keep his condition as much of a secret to her as we could.)
July 12, 2007, 7 p.m.ish: Quentin was on his way to New Orleans and experiencing a gamut of emotions, relief that someone knew what was wrong with him and was going to get his legs to stop hurting, worry about why I couldn’t stop crying, awe at seeing something (I can’t even remember what it was) that he and his daddy had recently discussed, pleasure at cracking a joke at my expense (the stench in the air being me with my shoes off in reference to our trip to Dallas the previous weekend when I did ditch my shoes for a second). That little joke – being able to keep his sense of humor about him in the midst of the most humorless occasion of our lives – was one omen that my baby was going to come out on the other side and be okay no matter how still and lifeless he was that night.
July 12, 2008, 7 p.m.ish: Quentin was, after repeated requests for him to try it, he might like it, trying and liking crawfish. He’d gotten so brave that year. People said I was an inspiration. I say, in Quentin, I had the best example being shown. How could I get it wrong? I didn’t have anything on that little boy. I took all my cues on how to keep my chin up from him when cancer was trying to knock me down.
July 12, 2007, 11 p.m.ish: Quentin was admitted, for what turned out to be only 10 days, but was said to be expected for much longer, and being taken to his first of many hospital rooms. We never got that room again, which I took as another favorable sign of the outcome. It was like God was saying, You’re here now, but I will heal you and you’ll NEVER be here again. The actual diagnosis came the next day, but by this point, everything said leukemia. When I finally went to bed after 3 a.m., I awoke at least once, thinking I’d had a bad dream. Corwin had the same experience.
July 12, 2008, 11 p.m.ish: Quentin was asleep in his own bed with his Superman sheets and healing afghan Maw-Maw Nona gave him in his Spiderman and Batman room after what he said was a long day and what I edited as a long, good day. His empty medicine syringes were on the tray next to his bed. My pastor in Texas often spoke about conversations he had with inanimate objects. That night, I had the pleasure of making the acquaintance of said objects for the first time.
“We might have a long way to go, but we’re kicking cancer’s ass. One year down; a lifetime to go! One superhero kid to get us there!” those syringes said.
Speaking of superheroes, remember that good year I was anticipating? Well, it included a bunch of superheroes. That summer, the theaters saw a deluge of comic books come to life on the big screen, including The Incredible Hulk with Ed Norton, The Dark Knight with the late Heath Ledger, Speed Racer with Emile Hirsch, and Iron Man with Robert Downey Jr. Only Spider Man 3 with Tobey Maguire was missing; it had come out the year before.
But there was an even bigger superhero making a debut that year. In the midst of the Iron Man hype, my friend Adrienne Davis-Lott, herself a survivor of sorts, sent Quentin an action figure during one of his hospital stays. I’ll never forget how she inscribed the card because it really set me to thinking.
“An Iron Man for an Iron Boy,” it said.
When you think of it, isn’t that what Quentin really was? He couldn’t wall-crawl, crush cars, stop moving locomotives and whatever else the others can. But what he could do tops the fancy-smancy abilities – look cancer in the eye, stare it down, never blink and walk away a winner. I don’t know about you, but who am I gonna call? Iron Boy! And the Lord!
Incidentally, Jory wanted to get in on the superhero antics herself that day. For the first time, Fat Girl rolled over from back to stomach several times that morning. Just when I was going to count her out, she decided that day was something worth celebrating, too, and she did it in grand style for her brother.
That summer seemed strange to me probably because we actually had a summer. Quentin continued to do very well, maybe a little too well, actually.
See, he did another TV interview to promote Children’s Hospital’s upcoming telethon, as well as a segment for it during the telethon. Leading up to the fundraiser, the news station broadcasts stories of patients being served by Children’s.
By this time, people were tremendously moved when they saw Quentin and how good he looked. I never meant to brag, but I always agreed. He looked like the 6-year-old Quentin I imagined if he had never ever been sick. Maybe that’s why people, especially my mom, were moved to tears at the sound bite the segment ended on. Quentin punched the palm of his hand for emphasis’ sake and said what people believed was, “And now I’m back to my best self!”
In actuality, what he said was he was back to his “bad self”. Not exactly the claim I would like him to make, but all in all, I took it for what it was worth. Either way, considering the alternative, I would take it.
But, he outdid himself, or maybe I should say, he proved himself for the telethon, which obviously aired live.
Right before we went on air, Heath Allen, the reporter, had been familiarizing himself with Quentin’s story from his cue cards. Then, he approached us to get Quentin a little warmed up, I guess. He kept teasing Quentin about having a driver’s license. At first, Quentin was up for it, but the last time, he got a little frustrated about having to repeat he was too young to drive.
Well, when we went on air, after giving the audience our story, Heath Allen went and (oops!) did it again.
“And, you wouldn’t believe it, but this young fellow is feeling well enough these days, that he’s gotten his driver’s license and is tooling around town in his parents’ car,” he laughed.
I am mortified just thinking about it, but Quentin hauled off and slugged the guy in the stomach…on live television. Certainly not a sick child, huh? I was like, Great! I was sure nobody at school would be surprised by that as his morning routine was to find as many coaches and male students as he could to tussle with, give as hard a high-five as possible to or box with.
Meanwhile, Jory was trying to make a mad dash to play with something as I struggled to hold onto her.
Heath just laughed and asked Quentin to throw it back to the studio.
“Back to you, Margaret Orr!” he said in his most professional voice, sending it back to the meteorologist. At least, he redeemed himself by being charming, I suppose. Obviously, I couldn’t wait until Quentin was done throwing it back to station. They were probably just as happy to get us off camera.
I should point out here that Heath was assigned to us again a few years later for the telethon. He hadn’t learned his lesson. He was just as much a kidder when he came to our home in Patterson, following us from Quentin’s award ceremony in Lafayette for being chosen as a Cox Inspirational Hero. Fortunately, Quentin kept his hands to himself this time, likely because he enjoyed the reporter dancing, singing and coloring with him.
I also have to say Dr. Yu and I had the most pleasant exchange the day of the telethon. She was there to be interviewed as well. I don’t know if it was because of the festivities or because she hadn’t seen us in awhile or because it wasn’t a work day or what, but she was genuinely pleased to see us, even me. She gave me the biggest hug and even fetched me a bottle of water she offered to grab. I guess it was then that I realized that she didn’t truly resent me. She played hardball with everyone – nurses, other doctors, and parents – for the sake of her patients. I cannot say how much I appreciate that. Her hard-nose approach played an integral part in Quentin’s success story, I have no doubt.
Really, she was just another blessing, I could finally see. Truthfully, she kind of reminded me of the teacher I am. I expect excellence and nothing less. Hopefully, my students will have an epiphany about my ways similar to the one I had about Dr. Yu.
Anyway, I attended an awesome seminar in early June put on by the Leukemia & Lymphoma Society on the subject of transitioning cancer survivors back into the classroom. It would have been better served a little earlier, but it was still an eye-opener. I was able to confirm that at least one of Quentin’s chemo drugs causes some long-term learning disabilities, as does the radiation he underwent. Good to know, but bad to know, too, you know? (No pun intended.)
But that explained a little of what I’d been feeling. I always felt like Quentin knew a lot of the material that he didn’t get credit for in class. I kept going back to his last high frequency words test. He had gotten 25 wrong, but 16 of those were ones he definitely knew. I tried to determine if they used flash cards or the typed word, important because some of the letters don’t look like they appear typed. They did use the flash cards, and they really flashed them, where I had held up the word until Quentin gave me an answer. Sometimes, he needed the time to process the answer sometimes. Sometimes, he didn’t. At least if I had really known what the affects were I could have advocated for him where he got extended time to answer.
That’s only one example, but there were other things I knew he knew like time. I didn’t question coins because I did agree he struggled with that.
So I was back to feeling a little.........I don’t know............not upset, but I guess disappointed that he would repeat kindergarten. I felt like I dropped the ball because I didn’t figure out an answer soon enough.
I was also very scared. I’d been so prepped for the long-term affects from a physical or health, and even emotional, standpoint. Now, I realized we’d be fighting an academic battle, as well.
Still, I knew God hadn’t brought us that far to drop us off there.
That thought was evidenced by the fact Quentin would soon be starting tae kwon do, which he was psyched about. Can you even grasp how far we’d come?
Meanwhile, I was being out-duped by an 18-month-old. The month before, she had acquired another ear infection and been prescribed an antibiotic. Around the same time, she stopped drinking milk after two upset stomach deals. I thought it might have had to do with me switching her to a hard top sippy cup since she was purposefully spilling her drinks from the soft-spout cup.
Two weeks later when I took her for her follow-up and I was still forcing her to drink something or she got nothing else (yes, she resorted to just taking water if that was the only thing offered), Dr. Menina said that the antibiotic might have caused the milk to curdle in her stomach, and she didn’t want that effect again. I tried strawberry and chocolate in the milk. I tried putting it in cereal, but she refused to let me feed her. I tried switching cups. At one point, she was faking like she was taking sips, and she wasn’t. (Quentin didn’t try that trick until at least 2.)
But this was the clincher. I decided (based on how well she took medicine from a syringe – either she was so greedy she thought it was food, or she was copying Quentin taking his meds) that I would try to give her milk that way. She was supposed to be fooled because I had put the strawberry stuff in. Plus, she had had a pink antibiotic once. Hell, the milk looked like medicine. She took one look at it, hadn’t even tasted it yet, and started talking about, “No, no, no!” I was all out of tricks then, not to mention the fight.
Talking about a real, normal summer, we went on vacation! First, Corwin and I took the kids to Dallas to see Jeanene and her family for a few days. As always, Quentin and Dylan had a blast, but Jory and Sydney (girls) not so much. At one point, they even had a cat fight of sorts. Jory took major offense to the way Sydney was hanging on Corwin.
The next week, Mama and I took the kids to see my brother John in Maryland and then on to North Carolina to see Mama’s sister Barbara and her husband Terry and my friend Nicole and her family. John showed us an absolute fabulous time over the course of six days, as did Aunt Barbara and Uncle Terry and the Benford gang for the remaining three days.
With John, we hit all the major monuments. We went to the Smithsonian Institute’s National Air and Space Museum. We took in a Washington Nationals game. We hit Six Flags, dined out and caught Up. I loved that movie. And John, perfect host that he is, grilled an exquisite dinner for us the last day we had together and brought in a masseuse for me.
“After the year you had, you needed this,” he said.
I couldn’t argue with that.
In North Carolina with Aunt Barbara, we visited the Billy Graham Museum and went to an outlet mall one day while Uncle Terry hung out with Quentin and took him to see Night at the Museum: Battle at the Smithsonian. We also went to the North Carolina Zoo in neighboring Asheboro before I headed to Charlotte with the kids to hang out one night. Even though it was Nicole’s birthday, she was happy to share it with us at a local night movie in the park.
When we got back, Quentin had clinic. He was doing so well, Dr. Yu wasn’t having us back for THREE months then. She also reduced another med. We were actually down to only four, but three are ones she said he would take for the rest of his life, and they were more like supplements than actual medicines.
Dr. Yu raised her eye a little about him starting tae kwon do.
“He has a ways to go before physical contact comes into play. They’re only learning forms now. Plus, seems like he’s going to like it. It’ll help with his therapy,” I bargained/pleaded/justified.
And Ms. Jory, who really showed off for her audience while we were away, drank milk that day. She didn’t know she did, but she did. As promised, I tried putting it in a fast food cup a couple of times, but after initially being fooled, she wouldn’t take another sip. Then, I came across two recipes in Parent magazine. One was for a milk and orange-juice concentrate combination in a frozen glass with orange slices. She lapped it up. She got it every day that week. Then, I tried the strawberry recipe.
In case you’re wondering, I considered this a victory! I was the last woman standing! (Note: rub your hands together wickedly and insert evil, ghoulish laugh here) And, I don’t have any qualms about tricking a baby. Nor do I feel even the slightest guilt in taking delight in it, though I was a little disenchanted with the fact that I couldn’t share with her that she’d been had and watch her expression while I stood over her and talked smack to her. No, there isn’t anything wrong with me, thank you very much!
Speaking of victory and dominion, we celebrated the second anniversary of Quentin’s diagnosis with a trip to Chuck E. Cheese. I know some people probably think this was a weird thing to celebrate; the transplant would be more appropriate obviously. Well, we celebrate that, too, because it is the obvious thing to celebrate. The diagnosis is a less obvious reason to commemorate. But for me, it was an answer to my prayer two nights before when my spirit was broken because of the endless doctor visits with no answer though he was clearly in pain. Besides, no healing could occur without a diagnosis. This follows something I read once: You cannot conquer without a crisis. You cannot win without a war. So I celebrate the diagnosis as the beginning of our blessing.
On the morning of his anniversary, Fr. Danny Poche touched me with his sermon. He talked about a man who was active in the church he pastored before coming to Holy Cross Catholic Church. The man was a retired principal, I think, but he also was in the choir and several service-related church groups. His heart started failing, and it was determined he needed a transplant. While he waited for it, he was put on some heart machine that he had to carry around with him all the time. Father didn’t say, but apparently the man was not able to be involved in the things he had been before, but he still came to church faithfully.
One day, he asked to come and talk to Fr. Danny.
“What is the purpose of my life now that I can’t serve the way I did before?” the parishioner asked of Fr. Danny.
“Your purpose now is the encouragement you give me, and probably other people, with the way you still get up and come to church when you’re sick and people would give him a pass, and he could take it,” Fr. Danny said he counseled the man.
“That man reminds me to keep on going, no matter what,” Fr. Danny ended his homily.
As I reflect on Quentin’s illness, now that things have settled down, I have thought often about why it happened. I had kind of come to the same conclusion about the purpose. It really encouraged me, and I think I’m a better person, a better mother, a better daughter, a better sister, a better teacher, a better friend, a better Christian for it. I hope anyway. For those of you thinking of something I’ve done or said and begging to differ, remember, I’m a work in progress. Heh! Heh! Heh!
I should note, and I’m borrowing from Dr. Freddy Haynes, the reason I wrote this book is twofold. First, God has been so good to me. Now, I wanted him to be good through me. Maybe our story will lift the burden of others who are struggling through a similar ordeal now. I pray I’ve been a blessing to someone who was coming to Christ through what they witnessed in me.
Second, I consider my kids to be the Marley of children – two frenetic, turbo-speed, high-octane, 150 horsepower ball of energies that I can never take my eyes off of for a minute lest they move one single, solitary muscle and somehow, someway cause the four walls, backyard trees and neighbor’s camper to come tumbling down around me, but that, not strangely (though one would think), my life is better for it nevertheless. That said, of all the blessings I’ve received, being their mom is by far my greatest! And I wanted God to know.
Since Quentin’s second anniversary, he has had a slew of blessings. When he re-entered kindergarten the following school year, he had an amazing and phenomenal year, one that ended with his promotion to the first grade. He grew and prospered under the care of Lynn Beaudean, his teacher, and Stefanie Russo, his aide. They apparently benefited from their time (and comedy) with him as well. Early in the year, when I spoke with Ms. Beaudean to “warn” her about Quentin as I had done the year before with Ms. Marino, her comment to me was that she noticed “he had some foolishness in him”.
Many parents, I’m sure, would take umbrage at that. But if I’m honest with myself, I know it’s true, and I know it’s evident to anyone half-way looking. Plus, she wasn’t mean-spirited in her assessment. Just perceptive.
Ms. Russo must have made a similar discovery soon, too. Her husband, Joe Russo, who was the baseball coach at my new school, Patterson High, often remarked to Corwin (who covered PHS sports for The Daily Review, that his wife kept their family in stitches with daily doses of Quentinisms experienced during her day. I must note that he must have been at full speed each day because Ms. Russo only worked half-days.
In January 2010, about nine months into his karate training, he moved up to his first belt – yellow and white. Even before this, to hear him tell it, he was Bruce Lee reincarnated.
Once when I picked him up from practice and told him that we had to go back to my hairdresser Trina Benjamin, he observed that “they were going to be afraid of him” because he was still in his uniform. Well, what happened when we walked in?
“Oh, man, we scaaaaaaaaarrrrrrrrrrrrrreeeeeeeeeeddddddddddd of you!” was the first thing out of Trina’s mouth.
I don’t know what he ate up most – that he was right or that they were “scared” of him.
By February, Quentin had gotten so fine and filled out so much he needed new pairs of uniforms. We went through three sets by the time the year ended.
Celebrations were abounding. We basically went from New Year’s to a first Super Bowl win for our New Orleans Saints (boy, did we dance in the street!) literally into Mardi Gras and right into March, where we celebrated Quentin’s second transplant anniversary with glowing results from the battery of tests he had to undergo again. So good were the results, that we were handed an appointment card that read October. Six months! Can you believe it?
While we were at the hospital for some of the tests, Quentin and I did a radio interview for the hospital’s upcoming radiothon fundraiser. (I am always happy to do this kind of thing to just repay a tidbit of all the hospital and staff has done for us.)
I marked the occasion of his anniversary by making a video clip to send to Good Morning America’s weekend segment “Three Little Words”, where viewers share their week’s highlight with just three written words. He held up two signs – one that said “Transplant” and the other “Anniversary”. Corwin practically threw an extremely delighted Jory into the frame holding and pointing to a sign that read “Donor”. It was adorable! The only problem was I had taken it on my cell phone and for the life of me couldn’t find my cell phone box or USB port to upload the video.
Ambitious that I am, we reshot it with my digital camera (I was unaware that my digital camera had video capability. I know I should be ashamed to admit that. But, I’m not.)
This take was even better (Quentin was even smiling)…until a message registered on my screen that my memory card was full…before I got Jory in holding up her sign where it could be read in its entirety. It was sort of folded to where it read just “Don”.
On the way to Easter Mass in New Orleans to see my new niece Jordan and my new nephew Timahj baptized, I planned to erase some of the pictures on my memory card…until my battery died. I didn’t realize it needed charging.
Because of the time constraint I found myself in (a week is only so long), instead of waiting to get home and charge the battery overnight and then reshoot, I just sent it in as it was. I figured they were too cute and the message was too great to pass up. (America was smart enough to figure the last word was donor, right?) I never saw it, so I don’t know what happened.
Quentin memorized his first scripture Philippians 4:13: I can do all things through Christ who strengthens me. It was meant to get him through the hard tasks of each day, as well as catching up on things he was behind on, like tying shoes.
It was also in time for his first go at organized sports – baseball. He was a Dirt Works Pirate. He wore #7. He was absolutely handsome in his uniform. But, he needed that scripture.
By the end of the season (which came with a record of 1-12), he had been hit with a bat in the chest and a ball in the chin. He even started to run. (First game, he was on deck when his teammate hit a homerun. As he rounded first base, Quentin, I guess, figured he’d better get in on the action and took off running after him. A coach had to tackle him to the ground. At his at-bat, Quentin got a hit, but did NOT run. He must have heard our screaming directions because he finally took off…to third base. Needless to say, he was tagged out. He went back to outfield (he was the third out) and proceeded to start this “Oh, yeah, I hit the ball” celebration dance. I could just see him signing autographs at the end of the game.)
Next game: another hit, still no immediate running. When he did get going, at least it was to first.
Third game, he ran to first…after a foul ball. So there was improvement every step of the way! But just as many laughs and calls for us to bring a video camera to be able to send something to America’s Funniest Home Videos.
After a serious hitting slump, he cracked a good one between second and third base in the second to last game of the season. But…he ran to third base again. This time, it was no laughing matter. He was so disappointed in himself he started crying on the field. Our parents cajoled him from the stands. His coaches and teammates offered words of support. The other team even clapped for his effort. In a class move, his coach awarded him the game ball afterwards. He was ecstatic. I was moved.
Last game, he made four stops in the outfield. The runners still came in because he wasn’t sure who to throw it to. And, I cannot lie, once, he held it and danced again. Sort of like, “Oh, yeah, I’m bad. I got the ball.”
The whole season it was just nice to see my baby having the life of a normal 7-year-old. We signed him up for basketball next. And under the expert and patient tutelage of Craig White, his karate forms were impressive. I knew it wouldn’t be long until he was up to a solid yellow belt.
Quentin went back to physical therapy in March for his hamstrings. It was a little more chaotic making it to his 8 a.m. Friday morning appointments, so we pushed his start date back to the summer. They sent us home with stretches and exercises to do in the meantime. When I brought him to his first summer appointment at the end of May, they deemed him to be in such an improved state, he no longer needed their assistance. We could just continue what we were doing from home and in karate, where Mr. White had been working with him one-on-one, following some exercises his wife Colleen, who is a therapist, suggested.
We did the Children’s Hospital telethon again in 2010. (Quentin will be 45 and still doing the telethon, because I’ll never say no. I couldn’t and wouldn’t want to say no.) Thankfully, there was no slugging on-camera or off. Just some pouting about “wanting to be the superstar” (They talked with me more than they did him this year. Maybe because they wanted to make doubly sure they weren’t socked. Heh! Heh! Heh!)
And, we went to see Shrek Forever After the Friday before Memorial Day. This time, it was a good time all the way around. R.J., my nephew who is a year younger than Quentin, had joined us for a few days. This time, when Quentin stayed up the whole night, it wasn’t because of pain. Instead, the only sound was peals of laughter from boys I couldn’t get to fall asleep if they paid me.
I mentioned giving back earlier. I always promised that once Quentin was out of the woods I would try to do something for all the organizations that helped us in our time of need. So that year, I signed on as a parent ambassador for the Leukemia & Lymphoma Society’s Pennies for Patients campaign.
According to the LLS, since 1994, millions of dollars have been raised in pennies and other spare change by more than 10 million elementary, middle and high school students throughout the country. The funds, collected during a three-week period, benefit The Leukemia & Lymphoma Society.
Basically, I contacted each of the schools in St. Mary Parish to participate in the campaign. Many of them did, either by hosting the three-week change drive or sponsoring $1 Jean Day or in several cases, both.
I was especially touched by the Patterson-area schools, including my own. Even though I had been at PHS for less than a year, they opened up their hearts and wallets like they’d known Quentin and me forever. My school raised $1106. Ms. Fryou and her gang at Hattie Watts did the same, raising $1100, and Patterson Junior High School, under the leadership of Molly Stadalis, rounded out the astronomical donations with an astounding $1650. I came to work under Ms. Stadalis, tutoring two days a week for her, but she made the commitment to participate in the campaign even before we had established any kind of relationship. I’m sure that was in part based on the fact that her assistant principal Dawn Chaisson’s nephew Grant Hebert had been transplanted recently when his leukemia returned.
Unfortunately, there were some low points, too. Grant’s transplant was successful, but he passed away Nov. 8, 2009 from veno-occlusive disease, which damaged his liver and kidney, causing them to fail. My heart went out to his mother Melissa Hebert. We had spoken by e-mail or through Ms. Chaisson several times. I had promised to stop by the hospital one day when I was in New Orleans, but whenever I tried, I could never reach her by phone. I never wanted to just show up at the hospital, remembering how full my hands had been sometimes during transplant. I didn’t get to meet her until the funeral.
Then, having met Blair McDonald only once before, I ran into him and his mom Juana on one of Quentin’s follow-up clinic appointments because Blair had relapsed again. Juana didn’t tell me then because partly, she didn’t want to make me consider that as a possibility for my own child, and partly, because she wasn’t still coming to terms with it herself. Corwin discovered he was in transplant again the day we did the telethon. We were interviewed on 4West, and Corwin saw Blair’s name on the board. I called Juana later that day, and she refused to play the victim, probably following her son’s lead. (Apparently, she took her cues from her offspring as well.)
Though he had been transplanted just the week before, already his counts were up to 1,500. The day before, they had been 280. He was expected to be going home the following Monday. Both Blair and Juana claimed this transplant, after five years of treatment, to be “it”. Like Quentin, Blair is a special guy. He’s charming, personable (this is the conclusion I came to in just two very brief meetings with him) and meant to be a spokesperson for his disease, I believe. So, I’m claiming “it” for him, as well. (Blair recently turned 21 and is doing excellent.
Also that year, Quentin, Jory and I all succumbed to the flu (it was never determined if it was the H1N1 strand) within a day of each other, and it really kicked each of us on our butts. We were sure Corwin would go down next with it, but he didn’t.
But hardest probably was that Sherry and Jon moved back home. I guess I always knew they would, but after they lasted four years, I thought maybe, they’d made Morgan City home. They feted with us one last time when we went out to eat for Quentin’s transplant anniversary. Quentin handled the news, which I held until the end of dinner, pretty good, but only because I don’t think he totally understood what we meant by home. Home, to him, had always meant Louisiana for them, not South Carolina. But he must have picked up on Corwin and my somber mood (we were devastated as Jon and Sherry had become such an integral part of our lives. They’d been there every step of the way with Quentin) because that night when I kissed him good-night (and several times over the course of the week), he mentioned missing them. I just told him that everyone had to go on with their lives.
That’s exactly what I intended for the Murray gang, including Quentin – going on with our lives. Praise God!
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