Where I’m From

Where I’m From
by Poppy H. (age 7)

I am from a house that has a smooth front porch and scratchy carpet.
I am from a house that has lots of toys and cats.
And a dog.

I am from a noisy radio.
I always hear the news.
I am from Dad telling me stories every night.
We love all the stories.
I am from me playing the piano C to G over and over again.

I am from root beer and saucy pizza.
(It is so cheesy.)
I am from the smell of cat litter and poop.
And also fresh crusty quiche and berries so juicy.

I am from warm hugs and kisses.
I am from Christmas,
Being the first one up and the last one asleep.
I am from cancer check-ups.
I am from laughing all the time.
I am from Slackajack and Butter – my favorite toys.

I am from love.

Self Portrait

Turning Two

Dear Sweet Mary Hazel,

I just scheduled your two-year-old well visit. As chance would have it, the appointment falls on the anniversary of the day we first learned of your cancer diagnosis. Almost to the hour. When I clicked on my Google calendar to record the appointment, I noticed that my hands were shaking a little bit and my heart rate thumped up a few beats. So many thoughts, so many feelings, so many memories. I consider June 29th to be one of those bookmark days in my life. One of those days that you can rattle off, without referencing a calendar, when life became different. The date is etched in my brain. I even notice the sequence “629” in license plates when I’m in traffic. It was a game changer, for sure. I can recall, with infinite detail, those seconds before, during, and after I got the news. I remember being incredulous, slowly walking backwards (stepping on toys in the pediatric waiting room), hyperventilating. With the diagnosis still ringing in my ears, my very first thoughts took me to a very dark place. Perhaps it was my own sense of self-preservation that catapulted me to the worst possible scenario. I experienced the worst sadness of my life within just a very few seconds. It was the loneliest, scariest, darkest place I’ve ever been. But once I was there, in that cave, my next thought was, “How do I get out of here?” My focus shifted. I looked at you, playing happily two feet away from me, and realized loving you with all my heart was what was going to bring me back to the surface for fresh air. Now, one year later, I feel such joy, such gratitude, when I think about June 29. This is the day you started to heal. This is the day I learned to love more deeply. This is the day by which all my other days can be measured. This is the day that taught me true humility.

You are going to be two tomorrow! All birthdays make me feel nostalgic, but this one is especially sweet. Let me tell you a little bit about this last year. Not all the cancer stuff. The other stuff. In no particular order…

Your siblings adore you. Poppy loves to be your mother and mentor. She is happiest when you ask her to paint your fingernails, play “Bunny Jengo”, and allow her to give you piggy back rides around the living room. Charlie would be a delightful playmate for any two year old, but you especially love to hang out with him. You tell each other nonsensical secrets, where you reply with a genuine, “Really?!” every single time. You chase each other under the covers and tickle fight until you are both exhausted. You like to “scare” him with your scary frog impersonation. “Grrrr…..grrrr!” You spend lots and lots of time with Charlie and Poppy. From what I observe, you have no idea that you are not a six year old, too. Maybe it’s all the time we spend on the playground after school with the other kindergarteners. Maybe it’s because you spend more time with your older sibs than you do your own peers. Whatever the reason, you simply crack me up and impress me at the same time. You climbed to the top of the play structure in Croft Park when you were 18 months old. You learned how to pump your legs and swing by yourself years before I expected. You are recognizing your letters, numbers, and shapes with regular ease. You can order my coffee for me when we pull up to the drive-thru at Starbucks. (“Grande coffee with milk and sugar…pleeeease!”) Just this week, you started sight-reading the word “coffee” on the side of the building. I am both proud and terribly embarrassed.

A happy memory this year is of you exploring Pawley’s Island for the first time. Hard to believe, but in October you weren’t even walking yet. Didn’t matter. You scooted on your bottom up and down the shoreline with infinite enthusiasm until the sun set and I had to carry you inside all brown and worn out. You helped DanDaddy build his ritual sand castles by collecting shells and splashing in the moat. You rivaled Charlie with your obsession of water and you spent hours shuffling beside him in the wet sand. It was a peaceful, restorative time for us all. We were all still glowing in the news that your cancer was gone.

You were a healthy, round pumpkin for Halloween. Your costume served as the perfect cushion for you as you learned to steady yourself in those early walking days.

You love to read. For as long as I can remember you have collected the M and the H magnets off the refrigerator (and Mrs. Barb’s desk at school) to spell your name. I have yet to convince you that you do not have to turn a book upside down whenever you encounter a W.

You say “dude” a lot. And “thumbs up”. The jackpot for me is when you combine them for an exuberant, “Thumbs up, dude!” with both of your thumbs pointing skyward.

When you walk in a room, you bounce when you stop, wave, and loudly inquire, “Watcha doing, guys?” 

You referred to yourself as “Mayche” for the first part of the year. Then you moved on to Miss Hazel before you mastered your whole name. Yeah, I miss that.

You personally found and invited Blackberry to come live with us this winter. She reminds me of you. Silly, self sufficient, and easy to please.

We still snuggle in the bed every single morning after Daddy’s alarm goes off but before it’s my turn to get in the shower. This is by far the most peaceful, warm, satisfying part of my day. I feel like a hibernating bear with my baby cub. When I eventually have to peel myself away to start the morning chores, you sometimes roll over in the place I left behind. The other day you sleepily thanked me for “making you a warm place”. I will always make you a warm place.

You love school. You adore your teachers. You idolize Mrs. Barb. We joke that you are the unofficial vice principal as you welcome your friends into the lobby every morning. I look forward to those ten minutes we spend reading books on your special bench before the clock strikes 9. These pockets of together time are the most special to me.

You regularly wear tea bags in your shoes and sport Mr. Potato Head glasses when you leave the house. You are actually quite insistent on both of these events. We’re still trying to figure out why. No matter.

You participated in your first Relay for Life celebration last month. You were officially the youngest walker making the survivor’s lap. You raised over $1650 dollars. In all my days, I will never forget the look of pure joy on your face when you took off around the track, running as fast as your chubby, healthy legs would carry you. You wore your purple shirt (which looked like a nightgown on you) with pride. With your pom-pom in one hand and me on the other side, we raced around the track three times before you even slowed down. On the last lap, you tripped on an electrical cord and skinned your knee pretty good. You paused long enough to grimace and ask for a kiss, but then you got back up and finished what you set out to do. I loved seeing the look on people’s faces as we passed by. It was a look that expressed gratitude, hopefulness, and inspiration. What a victory! It is this joy that you contain within you that makes me love you more with each day. You are a happy girl. Naturally, truly, and completely. How did I get so lucky?

I did not plan a big party for you this year. I don’t know exactly why. Several people have even asked me why I’m not pulling out all the stops, planning the biggest celebration ever. Part of me wonders the same. After reflecting upon it for a bit, I think it’s because I feel like everything has returned back to “normal”. Yes, we still have to dose you up with radioactive dye every few months and take some fancy pictures of your insides, but for the most part, our life has returned to normal. I don’t want to draw attention to the cancer so much any more. I want to focus on you being healthy and happy as all two year olds deserve to be. We will share a birthday cake with DanDaddy and Uncle Scott and watch you make a terrible mess of it. We will give you a scooter so you can keep up with Charlie and Poppy at the park. We will take a hundred pictures of you in hopes of capturing the energy of the day. In hopes of remembering you exactly the way you are at this very moment in time.

How different this June 29th will be! How different I am because of last June 29th. I love you for always my sweet, perfect baby. Come what may.

Project Kindness (Day 38)

The little boy, who was Mary Hazel’s next door neighbor last July at the Children’s Cancer Center was having a rough go of it that week. His mom and I spent several late nights in the lounge sharing, commiserating, wishing, and crying. His name is Will and he is the same age as the possums. He was diagnosed with a rare form of leukemia. Well, to be exact, it is Average Risk (AR) B-Precursor (Pre-B) Acute Lymphocytic Leukemia (ALL). That’s too many acronyms for such a little boy. He is a little over one year into his three-year treatment. He has his “bucket days” when he doesn’t react well to his very potent medicine, but he has a lot of good days, too. His father affectionately refers to him as SuperDude and keeps all of Will’s adoring fans up to date through his CaringBridge site. From what I read, Will’s family is devoted to him and takes great comfort in their faith. I really want this little boy to be OK. I really need him to be OK. I feel a special connection to him even though I do not know him very well. Time and circumstances play a major role in what turns out to matter in this life. I think about little Will quite often. Yesterday, I got a notification that his CaringBridge site has been updated. When I clicked the link, I read that Will’s dad is taking part in a local fundraising walk, CureSearch for Children’s Cancer. This organization is a national non-profit foundation whose mission is to fund and support children’s cancer research and provide information and resources to all those affected by children’s cancer. Well, that sounds good. When I browsed the site, two statistics jumped out at me:

  1. Charitable giving is especially important now, as federal funding for children’s cancer research has been flat for the last decade and was reduced by five percent in 2011. 
  2. In the last 40 years, the overall survival rate for children’s cancer has increased from 10% to 78%. At CureSearch, our goal is 100%.

That would make me super happy if all children diagnosed with cancer could be cured. So, in part, to make myself feel super happy, I donated to Will’s page.

The walk takes place June 2 at Furman University in Greenville, SC. If you are interested in walking, check out the 2012 Upstate CureSearch Walk page. I you would like to help little Will reach his goal, please consider donating to his team.

I wish that fewer of my acts of kindness had to do with pediatric cancer. I really do.

Project Kindness (Day 34)

My heart is heavy. Baby Noah passed away this afternoon. I hear he was surrounded by his loving parents, his twin brother, and his dog. I hear he was comfortable and in no pain. I hear that his mom and dad have been brave throughout this unimaginable ordeal and were at peace with Noah’s transition from this world to the next. I cannot stop thinking about him. About them. About the whole awful awfulness. Other than offering my constant thoughts and prayers, there is little more that an acquaintance like me can do to help diminish the pain of this family. There are so many others, like me, who desperately want to make things better, but that’s really silly, isn’t it? There is nothing that we can do to lessen the blow, to heal the wound, to turn back time. The love of family and the passage of time are probably the only things that will eventually swing the pendulum of suffering the other way. Words really do fall short.

With this grief weighing so heavy on me (and all of us who knew of Baby Noah), I wanted to do something to help some baby, somehow. Something that was actually within my power. I wanted to offer something life affirming. Something that is tangible and vital and nourishing. When I thought of my own babe, I was reminded of the one thing I knew I could offer to her upon her own recovery from cancer that immediately started the healing process for both of us. I gave her my milk. Of course, it was more than just the milk. It was the bonding that goes along with it. The eye gazing, the skin-to-skin contact, the snuggling. The indescribable relief. For me, being able to provide that nourishment to my daughter, both physically and emotionally, was exactly what I needed to feel like I was contributing to her recovery. And that’s when it hit me. I could do the same for another child. Well, not all of it, but provide the milk at least.

I have had a little experience with this type of donation in the past. Just over a year ago, a lifelong friend of mine was blessed with the unexpected opportunity to adopt a newborn baby boy. She is as good a mama as there ever was. I had more milk stored in my freezer than I had mouths to feed. I offered. She accepted. He is a very healthy, happy, much-loved (almost) toddler today.

I don’t know of any adopted newborn babies this time around, so I knew exactly who to ask for help. When I was pregnant with Mary Hazel, I wanted to try my hand at a natural childbirth experience. With the twins, I had the dubious distinction of delivering Charlie the “traditional” way and Poppy via emergency c-section. Long story. With Mary Hazel, I had a hard time finding a doctor who would allow me the trial of labor. They wanted to schedule me for a c-section right after they confirmed my pregnancy. I didn’t like that. Not a bit. I started Googling and asking around and seeking alternatives. That’s when I found the great, the wise, the Super Doula, Julie. It was through my relationship with her that I started really believing I could have the birth experience I wanted to have. I even signed up for her Hynobabies class where I learned techniques for interpreting pain as pressure and trained my mind to only have positive associations with my birthing time. I must admit, I was a little skeptical in the beginning. It sounded too good to be true. However, I knew from personal experience (i.e. I was hypnotized several times to hilarious effect in college), that I was very open to the power of suggestion. I went for it. Lo and behold, it worked! I arrived at the hospital in full transition and delivered sweet Mary Hazel just a few minutes later (while holding squeezing the ever-living life out of the hand of another friend and doula). It was all I could have hoped for and more. The point of this story is that Julie is good people. She helps mamas. She guides them. She wants them to be successful and happy and empowered. I knew she could help me again. I asked her if she happened to know of a local mom and baby who might be in need of breastmilk donations. When she returned my e-mail just a few minutes later with a hearty ‘yes!’, it seemed like it was meant to be. I contacted the mama and within an hour’s time, we had worked out most of the details. Since I am a (clears throat) rather busy person these days, I didn’t want to overextend myself. We agreed to a few ounces a day with a delivery once a week. Her husband works down the street from my house. It was a match made in Heaven.

I am under no illusion that I am saving anyone’s life. I know that I cannot cure cancer. I know that Baby Noah was dealt an incredibly unfair hand that nobody could change. I’m still plenty sad and know that I will not soon forget how this experience has made me feel. I do feel hopeful, though, that when we feel our lowest, we can still offer someone something of value. Something that might very well be perceived as a blessing. And I do believe that is what this ‘paying it forward’ thing is all about.

Project Kindness (Day 32)

Today’s act of kindness was bittersweet. It has been on my list since the beginning, but I kept finding reasons to put it off, to wait one more day. I delayed until the weekend so I would have plenty of time to prepare and linger, if necessary. Today I returned to the pediatric oncology unit at the hospital where Mary Hazel was treated for and cured of Wilms Tumor nine months ago. I wanted to thank the doctors and nurses who took care of not only my baby but all the precious children who are undergoing cancer treatment. Again, I asked myself how in the world do you say thank you for saving my daughter’s life without it falling woefully short? I decided on a basketful of chocolate chip cookies and a bouquet of sunflowers, the happiest looking I could find. I realize that cookies and flowers are not really on par with removing cancer from my baby’s body, but I just wanted to let the staff know, after all this time, that I still appreciate them.

When I got ready to go to the hospital, I wondered if I should bring Mary Hazel with me or let her take her regular (and much-needed) afternoon nap instead. On one hand, I thought it would be nice for the nurses to see how happy and healthy she is now. On the other hand, I wanted to be sensitive to the other patients’ families who are still fighting the fight. Would I want to see a toddler in remission running around laughing and playing while my toddler is sick in the bed feeling nauseated from the latest round of chemo? In particular, there is a little boy I know of named Noah who is a little younger than Mary Hazel. He was very recently given the saddest prognosis. What his mother thought was an ear infection several short months ago turned out be a nasty and aggressive cancer. Neuroblastoma, to be exact. Though they pursued chemotherapy and completed a round of bone marrow harvesting, the tumors spread more and more quickly. There is nothing else to be done except make him and his family comfortable. The hospital christened a brand-new pediatric hospice unit in his honor and named it Noah’s Ark. He has been surrounded by his whole family this week, including his twin brother and his dog, Gizmo. My heart breaks every time I think of Noah, which is quite a lot. When I heard that he had entered hospice care, I broke down and cried in the freezer aisle at Publix. My sadness is twofold. Primarily I am devastated for this sweet boy and his devoted family. It is a horrible thing to even hear about much less have to live through. I cannot imagine what their journey has been like. I also feel very emotional because I keep picturing my family in an alternate universe where this could have been us. I don’t think I could endure it. I don’t know how anyone does.

When I took the elevator up to the fifth floor of the children’s hospital, I started getting nervous. I felt like I was in a time machine as I had not been in that elevator since we brought Mary Hazel home from the hospital in July. I felt like I was wearing a heavy blanket of anxiety and dread all over again. I reminded myself that this trip was intended to be a good thing. When I pressed the button to open the automatic double doors to the pediatric oncology unit, my heart started beating faster. It was déjà vu. I expected to hear the beep-beep of the monitors, see the nurses quietly and quickly moving from room to room, and hear the whispers of mothers comforting their children. Instead, it was dark. All the room doors were closed and the nurses desk was abandoned. The play room was empty and locked. It was a ghost town. I couldn’t really make sense of it. Where were all the people? Where was the place from my memories? I didn’t really know where to go or what to do. I kept walking until I found another set of double doors which took me to the PICU. There I found a nice nurse who told me the pediatric oncology unit had moved to the main hospital because they needed more space. I was relieved to be put on the right path, but I was sad to hear they relocated  because they needed more rooms. Somehow, it made me sadder to think the place where Mary Hazel was healed was no longer really the way I remembered it.

I finally found the right place. When I walked in, it was bright and big and cheerful. Right away, I spotted two of the nurses who helped us so much. I gave them the sunflowers and cookies. They smiled and thanked me but then asked, “So, where is she? Where is the baby? Why didn’t you bring her?” I still wasn’t really sure why I didn’t. Sweet Dr. B. popped her head out from behind a door and came over to hug me. I asked her where Noah’s Ark was and she nodded toward the corner with a solemn face. I asked how the family was doing. She told me that Noah was comfortable but there was nothing more they could do. My heart sank. She was clearly moved and said that it had been a hard case. Though I still have trouble verbalizing my feelings, that is why I could not bring Mary Hazel back. It seemed somehow not fair to bring her happy, chubby self to celebrate in a place where someone else’s equally precious child was clinging to life. Dr. B. asked me if I wanted to speak to Noah’s mom. I wanted to hug her, cry for her, shake my fists toward Heaven for her, but I couldn’t think of one single thing I could say to make anything less awful. They didn’t need to make small talk with me at a time like that. I asked Dr. B. and the nurses how they did what they do every day. She reflected quietly for a moment and then replied with a wistful smile, “For every case that devastates me, there are fifty success stories to celebrate.” She said she couldn’t imagine ever doing anything else. This is one of the many reasons she deserves sunflowers and cookies every day for the rest of her life.

Project Kindness (Day 31)

Earlier today, the kids and I got caught in a gully washer. It was a doozy. We were trapped with several other families under a very tiny canopy at the playground after school. The longer it rained, the closer we huddled as the wind was blowing the rain in sideways and the concrete pad was starting to flood. Charlie was actually running around unapologetically and stomping in the mud puddles (as all five-year-old boys must do). The baby was a little unsure of the booms of thunder and cracks of lightning. She climbed up my side like a young koala bear and buried her head in between my neck and chin. Before long, she was fast asleep and I was toting around a thirty pound marsupial. Since most of us had walked to school, we were not too keen on trekking back through the deluge. We joked that it would be nice if a boat came along and rescued us. When the rain let up enough for us to see between the drops, we all set out for home. We were soggy. If you know me, you know that my hair and moisture have a the opposite of a symbiotic relationship. It is well established that my nickname among my family is “Chicken Head”. Endearing, no? Needless to say, once my hair dried a bit, it was full on chicken. The good news is that I had a hair appointment scheduled for this evening.

I so look forward to my hair appointments. It’s not because they always get it right or that I come home looking like a movie star, but while I’m there, I relax. I drink herbal tea. I listen to meditative music. I go on a “sensory journey” while getting my scalp massaged. I drink more herbal tea. I might just get a little spoiled. It’s really one of the few scheduled parts of my life that is all about me. And though I enjoy it, I always feel a smidge selfish about my indulgence. I was having that exact thought when I opened my eyes after the final rinse and saw the boats. There were dozens of little paper boats decorating the walls of the salon. Each boat had a name written on it. It looked like a fundraiser. I was happy to find an opportunity to practice kindness in the midst of my decadent hour. I inquired.

Ah, yes, the Dragon Boat Festival. I’d heard of it. According to the website, which summarizes it better than I could:

“The Dragon Boat Upstate Festival, now in its sixth year, has raised over $500,000 to date in support of local families and hosts more than 1,500 visitors and team members during the annual event. Paddlers, volunteers and supporters enjoy a day at the lake while supporting cancer research, rehabilitation and other cancer services at the Greenville Hospital System Cancer Center.”

The salon is participating this year and is raising funds for their dragon boat. They had me at cancer. The Children’s Cancer Center of Greenville Hospital System healed my baby girl and her parents along the way. We owe the staff, the facility, and the technology, well, everything. I would swim across the same lake to raise money for this particular cause. (In fact, I came home and looked up the website right away. I just might sign up to be a paddler on one of the teams still in the organizing stages.) I gave my donation with a happy heart. Go GHS! Heal all the babies you can (and the mamas and daddys and uncles and grandpas and everyone affected by this bully of a disease).

As I pulled out my wallet to pay, I remembered what I had wished for earlier today – a boat to rescue us. Huh.

Project Kindness (Day 24)

“Matchmaker, Matchmaker,
Make me a match,
Find me a find,
catch me a catch…”

It seems like a lifetime ago that I joined a group of amateur athletes through Team in Training to prepare for my first BIG race, the Mrs. T’s Chicago Triathlon. I joined because I wanted help training for a race I was a little nervous about attempting on my own. I trained hard with my coaches because I wanted to get the most out of the experience and, well, not embarrass myself. I raced in honor of the brave little girl we met through our local chapter who was then fighting a terribly unfair battle with leukemia. I was as dedicated to my fundraising for The Leukemia and Lymphoma Society as I was to getting in my laps and miles at the gym. My timing was serendipitous as the patriarch of the family-owned company where I worked supported the LLS as one of his major charitable causes. The love of his life for over fifty years was also fighting a blood cancer. With his help, I was able to humbly raise over $10,000 to help others who were in the middle of their own fights with cancer. The good news is that I finished the race and did not in fact embarrass myself (or my coaches hopefully). The great news is that the little girl is now all grown up and has been in remission for ten years. I could not have known then how personally cancer would affect my own life, my daughter’s life. There was a sweet little boy in the room next to Mary Hazel’s at the cancer clinic who was going toe-to-toe with leukemia. He was struggling during our time there. From what I just read on his CaringBridge site, Will is doing really well but will continue treatment for another two years. If I could train for another race to help Will and others, I would. If I ever have another chance to raise $10,000, I will. Until that time, I decided to help victims of blood-related cancers in a slightly different way.

Today I took the first step to become a bone marrow donor and joined the Be The Match Registry, the National Marrow Donor Program. Like jury duty, it is very possible that I may never be contacted to donate any of my healthy marrow. If I do somehow get matched with someone who could use my help, I would consider it an honor. Though my daughter, who is blissfully in remission, did not have a blood cancer, I would have done anything within my power to help her heal. Since I have my healthy girl back, I would love to be able to pay my intentions forward to potentially help another child of another worried mama. I made a lot of promises very late at night in that sterile hospital room nine months ago. I vowed to pay it forward however, whenever, and whatever. This opportunity seems to fit the bill rather nicely.

I encourage you all to check out the registry. Even if you don’t want to part with your marrow, you could still give a nice donation toward research.

“Matchmaker, Matchmaker
Look through your book,
And make me a perfect match”

Eva - LLS Girl of the Year

Eva, The Leukemia & Lymphoma Society's Girl of the Year