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

Project Kindness (Day 16)

Happy World Kidney Day! What? You didn’t know!? It’s not on your Google Calendar as a recurring event? My goodness. Well, now you know. Truth be told, I didn’t know about this day dedicated to the celebration of the kidney myself until yesterday when it just happened to come up in conversation with a colleague. Pretty odd conversation. I was at first skeptical that such a day existed, so I read up on it.

World Kidney Day (WKD) is a global health awareness campaign focusing on the importance of the kidneys and reducing the frequency and impact of kidney disease and its associated health problems worldwide.” — Wikipedia

Well, there you have it. If there is anyone who would like to properly celebrate World Kidney Day this year, it would be me. My whole family, really, but I will speak on their behalf since one of them is just starting to make conversation like “Oooh – look at it! Moon! I found it! Where did it go?! Moon hiding? I miss it! Find it, Mommy! Find it!”

Eight months ago this week, our sweet baby had her left kidney removed. She also had her adrenal glands and lymph nodes removed, too. Fortunately, the nasty cancer that lived inside her kidney for her entire life was also successfully removed from her body. We are and will remain forever grateful to her pediatricians, her oncologists, her surgeons, her nurses, and her healthy right kidney for keeping our daughter alive. Today, I wanted to do something to honor Mary Hazel in addition to helping others. One of the baby’s favorite activities right now is reading books. She reads on the potty, she reads in the car, she reads on the changing table, she reads in the tub, and so on. Russell’s mom enjoys recalling the days when her own bookworm toddler dragged the World Book Encyclopedias to the bathroom with him to keep him company during long spells. Our baby comes by it honestly.

I thought it would be appropriate and meaningful to donate books to the Children’s Hospital where Mary Hazel was diagnosed, treated, and healed. Though we didn’t stay there as long as some, we definitely took advantage of the goodies the Child Life specialist brought to the room each day. Sometimes, there were toys. Other days, it was a fun CD. But every day, we always took a few books to read (over and over again).

The Greenville Hospital System has this savvy website that enables charitable-feeling folks to make donations toward toys most requested by the Child Life specialists who work with the kids. Though I plan to visit the Children’s Hospital in person soon, toting baskets of treats, I will make my donation today through the virtual world. (Today is my long day at the office.) I trust that the gift we make today in Mary Hazel’s honor will soon find its way to another eager child who looks forward to seeing the Child Life specialist walk through the door each day just as much as she did.

After I made my donation to the Virtual Toy Drive, I saw a link which allowed me to set up my own personal Toy Drive. So I did. If you happen to also feel like making a donation today, please click on the button below which will take you directly to Mary Hazel’s Toy Drive page. (Look in the top right-hand corner to see her picture and name.) She set a modest goal of $100. Perhaps if everyone gave just one book, she could reach this goal sooner than it takes her to read Go, Dog, Go! one hundred times in a row. (She’s already started.)

This could be a fun little experiment. Go ahead, click the button. After all, World Kidney Day only happens once a year.



Gorgeous

I got the phone call on my way home from work yesterday at 6:00. (Thank you, Dr. Cook, for not making me wait until morning.) She is a young and bubbly oncologist which made the news she delivered all the more welcome. “I’m looking at Mary Hazel’s film and it is gorgeous! And her lungs look gorgeous! No evidence of metastatic disease anywhere to be found.” I’m elated. Relieved. Able to relax once again. I even managed to do some kind of happy dance while driving a stick shift in rush hour traffic.

Many thanks to team Mary Hazel for your continued thoughts, prayers, and appropriately timed distractions. I love that my friends are funny and smart. Mwah!

Even more good news. I contacted a rescue organization for English Springer Spaniels in North Carolina and was able to successfully place ol’ Mr. Dodson’s animal companions, Sam and Sara, together in a loving home. This also makes my heart sing. Hope he knows they are being looked after. Warm fuzzies abound.

 

God Bless Elmo

I’ve been dreading today since we scheduled this follow-up CT Scan three months ago. As part of the Wilms Tumor study, Mary Hazel is required to have these scans every quarter for a year and then every six months after that. Don’t get me wrong, I prefer these awful scans to the even more awful thought of chemo, so I won’t complain too loudly. Having said that, it was pretty awful. There was a lot of screaming, thrashing about, and full-body protests. And Mary Hazel wasn’t happy either.

I woke up Little Girl this morning at 4:00 so she could get her milk on before the cut-off time of 5:00. She willingly obliged and then thankfully fell right back to sleep in the big bed. I woke her up ten minutes before we walked out the door at 7:00 so she wouldn’t have to see the other members of our family enjoying raisin toast with peanut butter. I was feeling very happy that the timing was working out so nicely. We dropped off Poppy and Charlie at a friend’s house where they stayed until it was time to walk to school.

As I drove to the hospital, that feeling of dread became more apparent and I realized that my stomach had been in knots for days. Even if the results of the scan are all that we hope and pray for, the actual test is just plain awful. Mary Hazel was so happy and busy toddling around the Radiology Waiting Room that it made me even sadder that she would be taken by surprise. “Oh, look Sweetie – it’s Tigger wearing a Santa hat. Isn’t that cute? Now look at him the whole time that nice nurse sticks a long needle in your arm. There, there. Please don’t hate Mommy.” The first time they stuck her, she bled. A lot. The nurses even asked if MH had clotting issues related to her condition. Russell and I looked at each other and answered “Not that we know of?” like it was a question. They promptly removed that IV and picked some new real estate of cute baby goodness. This time it was her foot. It seemed to take a little too long to get that one in, but it worked. As a bonus, Mary Hazel’s pink polka-dot leg warmers came in handy as nice IV site covers. Just when the crying subsided, it was time to poke several dozen syringe fulls of radioactive juice down the baby’s throat. This is, without a doubt, my least favorite part of it all. I had to sit in the rocking chair with her right arm pinned under my arm. I used my right elbow to pin down her left arm while Russell held her head in place as I shot milliliter after milliliter down her screaming throat. It was just plain awful. My husband has accused me once or twice of exaggerating details when I tell stories. I say that just makes stories more interesting. In this case, however, I know it took me exactly 40 minutes to force 24 syringes of yuck into Mary Hazel’s digestive system. We were supposed to administer even more, but I called it quits when the baby starting throwing up toxic juice. When I finally released her from her Mommy prison, she clung to me like a newborn orangutan and fell asleep as soon as her head hit my shoulder. It was so sweet and sad. I rocked her until it was time to get the scan.

All was well as we entered the dark room decorated with virtual fish tanks and under-the-sea mobiles hanging from the ceiling. We thought we were going to be lucky, like last time, and watch Mary Hazel sleep through the whole test. She probably would have except there was a problem with her IV. All the thrashing about earlier led to the catheter becoming crimped. When the nurse tried to push in the contrast dye, she realized it wasn’t going to work. They had to pull out the IV and place it for a third time. Needless to say, Mary Hazel woke up and she was downright incensed about the whole thing. More singing, more shushing, more hair stroking, more pleading for this morning to be over. After about 15 minutes, we were ready to try again. I think the poor baby was so exhausted that she didn’t have any fight left in her. She lay there blankly staring at the red cross-hair lights that shined upon her chest and held my hand as they moved her forward into the machine. The actual test only took about a minute. This is a good thing, but I declare, why does it have to take two hours to prepare for it!?

When we returned to our room, Mary Hazel immediately tensed up when she spotted the syringe still poised on the table. When she saw the nurse, she started whimpering and squirming. Just when I thought we were headed toward another meltdown, an amazing thing happened. Elmo. Sesame Street was on the TV in our room, but the sound was turned all the way down so we couldn’t hear it. As far as I know, our baby has never laid eyes on the little red monster before today. But when she was him dancing with Mr. Noodle, it was pure magic. Her swollen eyes lit up, she pointed at the television, and she just started giggling and giggling. All the trauma and bad mojo from the rest of the morning was immediately forgotten. She had moved on. She had discovered Elmo. After a few minutes of watching in wonderment, she looked me right in the eye and asked with her hands up in the air, “What’s this? What’s this?” This, my dear, is what we will be watching in exactly three months when we find ourselves back in this same exam room for this same procedure. God bless Elmo.

We won’t know the results of the scan until later this week. For tonight, I’m just relieved that we can mark this dreaded event off the calendar.