Dismiss The Myth – The Realities of Bone Marrow Donation

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On September 7th, the Be the Match Walk-Run St. Louis will take place at Tremayne Shelter at Creve Coeur Park.  (Registration and Event Village open at 7:30 a.m. and the Tot Trot, 5K and 1K events begin at 8:45 a.m.)  The event will help raise money and awareness for the National Marrow Donor Program.  There will also be a donor drive on site.  The event starts early, but you can still be a part of it.  To walk/run costs $35, and donations to the Be the Match organization are welcomed as well.
http://www.bethematchfoundation.org/site/PageServer?pagename=btor_redesign_landing_page

In honor of this event, I thought I would share some donor stories from people in the St. Louis area who are also involved on the local organizing committee for this event.  The goal is to “dismiss the myth” about bone marrow donation.  Read below for their stories.

Jacob, Age 25   

Jacob, bone marrow donor
Jacob, bone marrow donor

Jacob is a med student at St. Louis University and heard about bone marrow donation via the company DKMS which works with Be the Match foundation to recruit potential donors.  Jacob signed up to be a donor in March 2010 and then began working with Denise at Be the Match St. Louis to organize more drives in his area.  In October of that same year, he received the call that he was a match for a 7 year old boy who had leukemia.

He was working in the lab when he received an email that read “Urgent!  Please read and call immediately!”  Later, he was asked to do a bone marrow donation via aspiration where they surgically remove the marrow through the pelvic bone.  He was under anesthesia and his procedure should have been an outpatient one, but he had a scratched cornea at the time and had to stay overnight.  He mentions that though at the site he was “sore as hell for a day or two,” but the scratched cornea hurt worse than his backside.  After the donation, he said that he felt accomplished and proud that he could help someone out in need.

Jacob is in contact with his recipient who is now 10 years old.  His recipient had multiple transplants from multiple donors and although he is dealing with some complications from these transplants, he is doing well overall.  Jacob states that this boy’s family is very involved with Be the Match and fundraising events.

One myth Jacob would like to dismiss about donation is that to register is a difficult procedure.  It isn’t.  All it takes is a cheek swab.  He encourages potential registrants to become aware of what are the different types of bone marrow donations and make sure you are willing to donate if you’re asked to do so.  Jacob ends by saying, “The donation process itself is very involved, but if you’re found to be a match, you’re helping one person and their family.  You’re making such a large difference in their life.  It’s so worth it.”

Lillian, Age 51  

Lillian
Lillian

Lillian joined the Be the Match registry because one of her church members needed a transplant.  She was not a match for this person, but 19 years later she got a call that she was a match for a 37 year old man.  She received a FedEx package on a Saturday in April 2012 with all of this information and a letter that read that she should call immediately.  She was anxious because she had been on the registry for so long, but she called immediately.

Lillian had to fly to Washington D.C. courtesy of the National Marrow Donor Program to donate via a bone marrow aspiration.  She had to go there due to scheduling and the patient’s needs.  Her bosses were very understanding and she was allowed as much time off as necessary.  She said earlier she had done a PBSC donation (where stem cells are taken from the blood) she felt a little tired and that was all.  She later learned that the PBSC transplant didn’t work and she felt very sad. With the bone marrow aspiration, she did say that there was soreness and stiffness at the site upon recovery.  She took Extra Strength Tylenols and two days later walked over 3 miles around the D.C. area.  She had no other side effects.

However, when they asked her for a marrow aspiration, she spoke with the doctor about the process and decided to proceed with the donation.  She knew she could give her recipient a chance, but she didn’t know if she would be helping him buy a few more weeks, months or years.  All she knew is that she was buying him more time on earth to be with the ones he loved and that was worth it for her.

Lillian also encourages others who are thinking of becoming a marrow donor to not let others deter you from inquiring about donation.  She encourages people to seek out a Be the Match agency or talk with another donor.  She said the entire staff was diligent about her well-being and health.  She believes they were looking out for her and she didn’t feel like she was being used or taken advantage of.  In fact, the transplant doctor gave her such a complete physical and encouraged her to keep staying healthy and taking care of her body.  Lillian and her recipient have just hit the 1 year mark when anonymity can be lifted and they have a chance to get in contact with one another.  She hopes that happens.

BTM_Badge4_largeValerie, Age 24

Valerie learned about Be the Match at a donor drive held on her university campus.  She became curious because the family of a local high school student was hosting this drive.  Before being matched by the National Marrow Donor Program (NMDP), Valerie had donated peripheral blood stem cells (PBSC) via a process called apheresis to a childhood leukemia research laboratory at Cincinatti’s Children Hospital.  Once she donated, both her mother and sister signed up as well.

Valerie got the news she was a match for a 7 year old boy with Acute Lymphoblastic Leukemia (ALL) when she arrived at work on a Friday last year.  She checked her email and in her inbox was a message from the NMDP saying to contact them immediately as she was a potential match for this person.  She called right away to schedule further blood testing and then she immediately called her parents.

She is not in contact with her recipient but recently heard from the NMDP that he is recovering well.  Since donating, she has participated in several donor drives to help spread the word.  Like Jacob and Lillian, Valerie donated via a bone marrow aspiration from the pelvis.  She says the most common thing she is asked is, “Isn’t donating painful?”  She wants to stress that the marrow harvesting is done  under general anesthesia and the donor feels no pain during the process.  She arrived at the hospital at 4:30 a.m. and was released by 4:00 p.m. that same day.  “And PBSC harvesting is so simple that you can watch television during the procedure,” she says.  She wants to stress to people that being a marrow donor isn’t like being a blood donor.  You can’t just show up and expect to be the match.  Donors and recipients must be carefully genetically matched and so it is important to get on the registry and be patient because you never know when you will get that call.

Jeff, Age 44

Jeff and his recipient, Kim
Jeff and his recipient, Kim

In 2007, Jeff joined the registry in hopes of being a match for a family friend who was diagnosed with leukemia.  Sadly, a match was never found for her and she passed away shortly thereafter.  But, in the fall of 2009, Jeff got the call that he was a match for a 16 year old girl who also was diagnosed with Acute Lymphoblastic Leukemia.  Jeff knew that he could not only help give this young girl more time on earth, but if the marrow grafted, she could be cured of the disease altogether.  Without hesitation, he agreed to fly to Washington D.C. from the St. Louis area (again due to scheduling and the patient’s needs) to have his marrow harvested.

Jeff is a father of 2 children and so knowing his recipient was a teenager resonated with him.  Many people asked him, “How can you donate to a complete stranger?” and Jeff would always respond with a question, “What if it were your child?”  He was not afraid to donate except that he worried about being 40 years old and having his marrow given to someone so young.  He was reassured that he and his recipient were a perfect genetic match and he was her best shot at a new lease on life.

Through the anonymous letter writing program at the NMDP, Jeff and his recipient and her family stayed in contact during the entire procedure.  Jeff encouraged her to stay strong and keep laughing and staying positive because those were beneficial medicines as well.  In one letter, he wrote to her that he knew what it was like to have his wife as his “soul mate”, his brother as his “blood brother” and now he could say that they were “marrow mates.”

After the procedure, which wasn’t so bad, his kids made fun of him saying that he “walked like their grandpa” because he was stiff and sore.  He recovered the same day.  One year passed and Jeff and Kim, his recipient, got in contact.  Jeff and his wife flew out to Washington state to surprise her at her 18th birthday celebration.  Now, 2 years later, both Kim and Jeff are passionate advocates for Be the Match foundation and are involved in bone marrow drives and fundraising events, even lobbying Congress for funding and awareness for the program.  Most importantly, Jeff feels so much joy knowing that through his one day of donation Kim can now look forward to a bright future and make all the plans she has ever wanted and can chase after every one of her dreams.

If you’re interested in becoming a donor or would like to donate money to the cause, click on the link above in this post or to the right of this page.  You could be like these four donors and be the one to save a life!

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Using Your Life to Inspire Others

Recently, I became part of the Be the Match Social Media Active Response Team (SMART).  This means I get the privilege to use this blog and Ben’s story as a means to raise more awareness for the National Marrow Donor Program (Be the Match) and also to offer hope and inspiration to people if they or a loved one are going through a bone marrow transplant.  My family and I are lucky that Ben is doing so well.  He is a happy and healthy 5 year old boy who loves his puppy Lucy.  He will be starting Kindergarten in the fall.  He still has a huge heart and he charms almost everyone he comes in contact with (just yesterday he got a free Monster’s Inc. bag from the worker at Subway).  Although he had his last appointment with Dr. B in June, his story isn’t over.  He will have to check in with the transplant team at Children’s Hospital at least once a year for the rest of his life.  A small price to pay for a new lease on life.  And I am not done with this blog.  I plan on adding more stories about his journey.  The next one will be about his 1 year post transplant spaghetti dinner, and one day I hope to add another post when we meet his donor.  I will, however, be using this blog site to share other people’s inspirational stories and giving you interesting information and news about the foundation.  Today, I wanted to share with you a little information about someone who inspires me on a regular basis.  Her name is Robin Roberts – Good Morning America host and bone marrow recipient.

Robin Roberts, Good Morning America co-anchor
Robin Roberts, Good Morning America co-anchor

I’m sure many of you know Robin’s story.  Diagnosed with breast cancer in 2008, she underwent surgery and 8 rounds of chemotherapy followed by 6 weeks of radiation.  In 2012, she developed Myelodysplastic syndrome (MDS) and she was told she had to go through a bone marrow transplant.  Robin was lucky that her sister, Sally Ann, was a match for her, but she joined up with Be the Match donor program to promote awareness and to inspire others to join the registry.  African-Americans in particular are needed on the registry.  When Roberts announced her news to the public, Be the Match saw a significant spike in donor registry.  Sadly, days before she was to begin the intense bone marrow transplant process, her beloved mother passed away.  Renewing her strength to fight again, she went in to the process with a positive attitude and allowed her journey to be documented by cameras.  She was surrounded by a positive, loving family and excellent medical team and coworkers, friends and fans that sent her unconditional love and positive energy from afar.  http://gma.yahoo.com/robin/

To know that you have to overcome one scary health challenge is difficult in and of itself.  But to be told that your life is in danger again and this time you will have to be taken to the edge in order to be given a new life, could very well cause a person to break and lose hope.  I am 110% sure she had moments of wanting to give up, but her strength, determination and fighting and loving spirit came through at every crucial moment and crises she encountered along this journey.  She also relied on others to give her that love and energy back when she couldn’t do it for herself.  To admit you need help takes a lot of courage in my book.  To accept your life and your situation as it is, not as you think it should be, is being brave and honest with yourself.  She did that every single day of her journey to health.  It’s what I feel Ben did as well.  Our family and his medical team did our parts to give him everything he needed so as to fight for his life while also at the same time showing us how beautiful, raw and real miracles are.  I see a lot of similarity between her and Ben and I admire that fortitude and loving, charming spirit they both have.

Robin Roberts accepts the Arthur Ashe Award for Courage at 2013 ESPYs
Robin Roberts accepts the Arthur Ashe Award for Courage at 2013 ESPYs

Yesterday, Robin received the Arthur Ashe Award for Courage at the annual ESPY’s awards.  I watched her acceptance speech this morning and teared up.  My favorite thing she said is, “When fear comes knocking, let faith answer the door.”  A beautiful motto to live by.  Please take the 7 minutes to watch her acceptance speech.  It is inspirational for sure.  Also, you can click the Be the Match button to go to their website and find out more of what it takes to become a donor or to donate money.  You could be the one to save a life.  http://www.youtube.com/watch?v=L5AG3dVMwhw

 

A Mother’s Love

To tell another person’s story as honestly and lovingly as possible is a great task to undertake. I chose to write my sister’s side of Ben’s journey to health by trying to see the experience through her eyes. Fortunately for me, she kept a daily journal on Caringbridge.org and all I had to do was go back and read it and find sections where she revealed her truest feelings and fears so eloquently and bravely. As you read, you will find her words in bold print and my added details above or beneath hers. I had to use her words because they show a mother’s deepest, and truest love for her son. I couldn’t write this post in any other way.

A Mother's Love
A Mother’s Love

When my sister told me she was pregnant, we were at a Champaign high school where she met me and my friends and our students for a GlobalFest Foreign Language competition. I gave her a big hug (after I probably gave her a surprised look), and then I made her sit down while I went and got her some snack food because she was about to pass out. She became embarrassed, cried, thanked me and then cried some more. “Damn hormones,” she said. We both laughed, and secretly I thought about how different our lives had become over the past year: I was still driven, working hard and trying to stake claim to my independence and fiercely protecting it, while she had opened her life up to love and all of its unknown complications and its ultimate beauty. I was proud of and happy for her. I inherently knew that I, the bigger sister that tried to control and organize my life, had a lot to learn from my baby sister. Watching her be a mother to the first grandchild in our small family has been so wonderful. I was amazed how natural motherhood came to her. She glowed during her pregnancy, and her face radiated joy when she brought Ben home from the hospital. I remember her sitting in the wheelchair holding him as the nurse rolled her out of her room to the front desk so she and Ben could be discharged. She looked at her new little baby boy and smiled and cooed and then broke out in song, ignoring the rest of us who were standing around her watching her watching him. It was a beautiful moment that has stuck with me. This same unabashed, innocent love is what she gave Ben during his journey to health a few years later. A mother’s love, so pure and natural, can withstand any challenge or obstacle and make them dissolve in front of her as she tethers her child’s heart tighter to hers. A lifeline to hold on to in the dark and wild unknown.

Katy & Ben begin their lives together.
Katy & Ben begin their lives together.
Katy and Ben bonding at home
Katy and Ben bonding at home

The Journey To Health Begins
“As we came into the room, he was crying and screaming in agony. That’s when my heart broke a little. I fought back the tears as I climbed into that little bed to comfort that poor boy. He laid his head on my chest and cried in pain. Pain I have never heard from this kid. I think that’s what scared me the most, the child who has always been so resilient, this child with the strength of 50 strong men, is now hurting and I can’t do anything for him.” -Katy’s words after comforting Ben post-surgery for the insertion of his Broviac tube.

Ben before his Broviac insertion
Ben before his Broviac insertion

The day Katy, Todd and Ben left my house for Children’s hospital, we were all a bit on edge. Only Ben seemed to be the one that was carrying on as normal. The three of us adults did not address what was looming in the foreground. I kept my thoughts to myself. I wondered what Katy was thinking, how she was feeling. I wanted to ask her, but I was afraid that if I did I might pull at the threads of her sanity and cause her to break down. We come from a stock that is mentally and emotionally strong-willed. If we’re not feeling all that sure or confident about what is before us, we may speak our doubts, feel the fear, and outwardly do or say irrational things from time to time, but overall we steel our minds and set ourselves upon the task at hand, refusing to shy away from what is before us. Katy is probably the most quiet of us. She is guarded with her emotions and wills herself to get through life’s difficult situations while a current of emotions thrash inside of her as a smile and a nonchalant attitude on the surface mask the undercurrents.

I wasn’t at the hospital with them when Ben had his Broviac tube inserted. I can only imagine how she bit the inside of her mouth and busied her hands with her cell phone or anything she had at hand while they waited for the surgery to be completed. Reading her words on how she comforted Ben post-surgery touches on how deeply she felt for him: her heart aching as he ached; her tears welling up as tears poured out of his eyes; her agony in her throat as she curled up beside him and held him and whispered soothing words to him while his agony poured forth. Going back to the day she first left the hospital with him, she probably was oblivious to everyone watching her watching him. All that mattered at that moment was her touch, her voice, her presence at the beginning of his journey.

SuperMom To the Rescue

In his isolation room at the hospital, Katy slept on a small couch/bed near the window. Sometimes she would sleep in the recliner next to him, holding his hand as he drifted off to sleep. She would wake up in the middle of the night, change his pull-up that was loaded with crystallized urine full of toxic chemicals from the chemotherapy that could burn his skin or hers if she accidentally got some on her. She easily could have called the nurses in, but she felt it was her duty and desire to care for him. I’m sure in retrospect she would admit that it gave her a sense of purpose and a feeling of control of the situation that was in the hands of his medical team and ultimately God. At times, she took care of him more than the nurses, and really we had to force her to leave the isolation room and go out and get some fresh air and some alone time. Oftentimes mothers are guilt driven, fearing if they don’t sacrifice all of themselves they are terrible mothers. Katy fell under the spell of this pressure as well, but looking back I know she would not have it any other way. Her consistency in physically and emotionally being there for him was what added to his spark to continue to push through even the darkest times of the chemotherapy. Pushing herself to be the best mother she could in the most difficult of situations also motivated her to use one of her greatest strengths of her attention to detail.

Her drive to get something right the first time came into play when she was instructed by one of the nurses on how to clean his Broviac tube. We all were there for the instruction as well, and when it came Katy’s turn to clean the tube on the mannequin, her hands shook and every false step or tiny error was nit-picked by us and the nurse because we were so wanting her to get it right and take strength in having this amount of control in helping keep her son clean and safe. I knew the pressure was getting to her and reverted back into big sister/cheerleader mode, encouraging her to keep going and telling her she could do it. She almost cracked under the pressure while we were in the small room, but she wiped away her tears, took a big breath and forcefully said, “Let me try it again. You all need to be quiet while I do this.” All our fearful chattering, encouragement and nervous energy dissipated and we rallied behind her and she went through the training without a mistake. That was the moment I knew she was going to be Ok.

“Anyone who knows me knows that if I see something done I think that I should be able to do it on the first try with absolute perfection and that I don’t like to show my emotions. Well, needless to say, it wasn’t perfect. That’s the moment it decided to hit me. This is how our life is for now. My child is really sick and vulnerable to life. I’m responsible for his well-being and his health.” –Katy’s words after learning how to clean Ben’s Broviac tube

After that incident, she became a pro at not only cleaning his tube, but changing his dressing. Under her care, he never once received an infection and his dressings always stayed on for the entire week. In fact, she changed his dressing and cleaned his tube far better than almost every single nurse in the unit. Even a few of the nurses recognized this and praised her for a job well done.

Dark Days and ‘Roid Rage

I know you can prepare yourself as much as you want and never be fully prepared. I know this isn’t going to be easy or any sort of fun, but I know that I can make it easier on Ben. He’s the one who’s not going to understand why he doesn’t feel good, why his hair’s falling out, why, why, why. I can explain it as well as I can to a 3 yr old. He knows he’s sick. He knows he’s getting something big done.”Katy’s journal entry about the beginning of Ben’s chemotherapy

Going in to the harrowing days of the chemotherapy, Katy kept her cool. We all had accepted the fact that there was no turning back and this was the path Ben had to take if he was ever going to have a chance at being healed. The purpose of the chemotherapy was to kill off his bone marrow (his immune system had already been repressed by a first round of “Campath” drugs) and make way for his body to accept the donor’s marrow. We had all witnessed first-hand the devastation chemo can do to the body when our aunt went through it when she had lymphoma. Though we were aware of the side effects of chemo, we still were shaken to the core that Ben had to go through with it as well. Overall, Ben did well with it. We did notice a lack in appetite, and his moods became sullen and he became more withdrawn. We had to rally him more at that point than at any other. Dark circles formed under his eyes, and his hair began falling out and getting in his eyes and mouth until ultimately Todd shaved Ben’s head to avoid any more problems. He puked in a bucket and Katy sat by his bedside and rubbed his back and held his hand until he fell asleep. Looking back, she thinks maybe she suppressed some of her fears so she would be able to function and take care of him.

“Who likes to watch their child do this? Who wants to put their child through this? Who wants to take their child to the brink just to pull them back?”-Katy’s words on dealing with Ben going through chemotherapy.

The chemo was a blow to Ben’s morale. He had never really been sick like this and he was scared, tired, and worn out. There were days when getting him out of bed was a chore, and other days he would stay in bed and not want to look at or talk to you. At this point, your faith in God does get questioned. Katy reached that point as well, but drew from her life’s experience of losing 3 of our family members within 6 months of each other back when she was in high school. She consoled herself and reminded herself that what was happening was not God’s fault, nor was he vengeful, spiteful or angry; but instead there are sometimes “hiccups” in our genes and our bodies, and like ourselves, our bodies are not perfect. Reading through her journals again I see that she really worked through the idea that we are not meant to be here forever but we are meant to live the life we are given.

Ben & Katy at Tower Grove Park.  He has physically changed from all the prednisone.
Ben & Katy at Tower Grove Park. He has physically changed from all the prednisone.
Ben & Katy having fun on the computer program Photo Booth.
Ben & Katy having fun on the computer program Photo Booth.

Dealing with Ben’s “‘roid rage” was a bit more difficult for her because she became his immediate punching bag, literally and figuratively. Post transplant, he was on a high dosage of prednisone to stave off Graft vs. Host disease. Whenever the drug kicked in, he would take his frustrations and anger out on her, calling her names, hitting her, kicking her, biting her and yelling at her and then he would turn around and cry and apologize and become confused on why he was acting the way he did. She understood that he couldn’t help acting this way, but his actions did take a toll on her emotions and her psyche. Every day, however, she would rally and start the day with him as best she could and make sure that he had moments of joy and happiness regardless if they were in the hospital or at the hotel or on one of their many car rides.

You’re a Firework. . .Show ‘Em What You’re Worth

“Being up high we could see to the north, south and west and it was fireworks as far as the eye could see.” -Katy’s description of the 4th of July from the hospital isolation room window.

Ben’s transplant took place on June 22, 2011, and he was still in his isolation room at Children’s on July 4th. His white blood cell counts were in the normal range and all signs pointed that he was doing well and that his body had accepted the marrow. His morale was back as was his energy. He had rallied and was back to being happy Ben again who was fighting the good fight. We didn’t visit him that holiday due to the traffic in St. Louis and the many celebrations going on in the city. Katy stayed with him like she usually did and she and Ben were told that they would be able to see some fireworks from Forest Park if they looked out their window. Both their anticipation grew as the sky got dark and not a firework was in sight. Ben told her he didn’t want to get out of bed because he was too tired, and instead decided to draw fireworks so the fireworks could see his picture and come back for him later. And suddenly, as if on cue, fireworks began shooting up into the sky in every direction. Katy picked Ben up and took him to the window and they cuddled up on the couch and giggled and pointed at all the fireworks they could take in. And, though I wasn’t there, I can imagine a moment where they put their heads together, hugged and leaned in to one another and broke free from the hospital room, the tubes, the beeping monitors, the cramped quarters and pulled themselves closer to one another and held each other in their arms. Mother and son bonded to the core by love in its purest and most powerful form.

Katy & Ben on a hayride a little over a year after his transplant.
Katy & Ben on a hayride a little over a year after his transplant.

Be the Match Foundation

Ben on the first day of his journey to health.
Ben on the first day of his journey to health.
I’m proud to announce that Be the Match foundation has shared Ben’s story on their website. Feel free to check it out here: http://www.bethematchblog.org/2013/02/three-year-old-ben-fought-for-his-life-and-won/

Be the Match is such an important foundation. From the donor pool, our doctor found 5 perfect matches for Ben. 5! That’s unheard of! Ben’s perfect donor, Michael Estes, is a firefighter who lives in Virginia. He and Ben also share something in common: the rarest blood type, O negative. Our family is friends with Michael and his family now and stay in contact via email and Facebook. We look forward to meeting him one day to tell him “Thank You” in person.

Be the Match is helping change lives. If you’re interested in knowing more about bone marrow donation, click on Ben’s story or the button on this page. Feel free to share Ben’s story with your friends and family. The more hope and inspiration we spread into the world, the better we are.

A Valentine for My Benaroo

Book of Hearts
Book of Hearts

Recently, Ben and I sat at my dining room table and I let him draw hearts in my writing journal. He picked up his orange colored pencil and placed it on the blank page and carefully drew out a heart. We both took in a deep breath and looked at one another and smiled. “That’s your best one yet!” I exclaimed. “I know, Meeda! I know! I wonder if I can make another good one like that?” Ben said and turned and looked at the perfectly symmetrical heart. “I better practice some more,” he said and continued to cover the page in hearts. He filled it up with colors of orange, red, green, blue, and pink. When he finished, he picked up the orange colored pencil again and wrote, “To Meeda.” Then, instead of the word “love” he drew a heart and signed his name “Ben.”

For me, the replacement of the word love with a symbolic heart on my page speaks volumes of the relationship I have with my nephew. There seems to have been an unspoken bond between the two of us from the very beginning. I felt it the day I held him in the hospital room a few days after his birth. I felt it when he squeezed my finger as I read to him the book, Welcome to the World. When he was 8 months old, I remember him putting his arms around my neck and snuggling up to me as he fell asleep in my arms. The bond was sealed and has not been broken to this day.

Show me your heart.
Show me your heart.

Since then, our relationship has been full of synergistic energy: both of us feeding off one another as we make up stories, play with his toys, sing songs, draw silly figures, dance like wild things during our impromptu dance parties, and laugh at the most random times.

The day before he went to Children’s Hospital to begin the 3 month long transplant procedure, he and his parents stayed with me at my house. In my heart, I knew the way I treated Katy, Todd and Ben would set the mood for the scary and fateful day that was knocking at our door. I tried my best to give them, Ben especially, the “red carpet” treatment. We took Ben and Sancho to the park and played (and also got family photos from Becca at Wishbone Photography). I made a great summer meal along with chocolate cupcakes with buttercream frosting. Ben ran and played on my neighbor’s swing-set well into the late evening. He even had the brilliant idea of having Katy hold the cupcake near the slide so he could take a bite as he slid down. Later on, we laughed and watched movies and sang songs, and he went to bed and slept soundly, which is probably better than the three of us adults could say.

The next day, tension was in the air. We all knew what was coming. As did Ben. Katy never lied to him about what he would have to do, and he knew he was going in that day for his surgery for the insertion of the Broviach tube. Still, we all put on a brave face and Ben and I continued to play and make sidewalk chalk drawings and laugh and sing songs and make up funny games. About a half hour before they left, Ben and I took Sancho for a nice walk around my neighborhood. When we got to the tennis courts across from my house, he stopped and wouldn’t move. I asked him what was wrong, and he said, “Meeda, I’m scared.” I didn’t try to talk him out of his fears. Instead, I stopped and walked back towards him and said, “I know. And it’s O.K.” I had every opportunity to be the big, brave adult and feed him cliched lines like, “Don’t be scared. Everything will be Ok,” but those words would have been lies. It was right for him to be scared and I couldn’t promise that everything would be Ok. I just stood next to him and held his hand and let him take the lead on this one. He stood silently and then took a deep breath and said, “I’m Ok now.” I asked him if he was sure, and he nodded his head. I bent down next to him and gave him a hug and said, “You are a brave boy and can handle all of this, but you can always, always tell me or your mom, dad, grandpa or grandma anything and we will all listen. That’s a promise.” He hugged me back, and then he took my dog’s leash and kept walking and chatting about silly little things; and the silly little 3 year old was back and in his silly little 3 year old world.

A lot of my time that summer and fall of the entire procedure was spent dedicated to Ben. Friends and acquaintances said they admired my dedication to my nephew and that he was so lucky to have an aunt like his Meeda to help him through the tough and strange times that followed. I took those compliments graciously because I knew that they came from a real place; and from the outside looking in, there does seem to be some truth in the fact that I put my life on hold so I could give every ounce of my energy to Ben on his journey to health. I wouldn’t have changed anything at all because it was during this time that my life truly began. I got to feel and experience the deepest meaning of true love.

As strange as it may seem for someone my age, true love has made its way onto movie screens but has never entered into my life. For a very long time now, I have been a victim of the Hollywood romantic-comedy: thinking I would have a “meet cute” with a handsome man and we would live happily ever after once we realized we were meant for each other. As of right now, that has not happened in my life. I will spare the gritty details of the men that have broken my heart and plunged me into the deep abyss of feeling unloved and unwanted. Part of the reason love has been elusive is because I am reserved and guarded. My heart has been broken too many times in too many ways that it’s easier to go into defense mode than it is to remain vulnerable and reveal my truest self to someone.

Then, Ben’s journey began, and I was asked to show up as myself and pull from within me my greatest strengths to help another person get his bearings and weather a storm that could become unpredictable at any given second. I did my very best, and as the days, the weeks, the months progressed, I started to learn that I needed him as much as he needed me. I chose not to simply put on a brave front and tell him lies and show up at random times and wish him well from afar. Instead, I met his expectations of “come as you are” and showed up as myself. I didn’t have to dress a certain way or act a certain way. If I didn’t want to shave my legs, what was it to a 3 year old who only wanted to play with his dinosaurs and toy trains so as to momentarily escape his condition? And so we spent hours, days, weeks, and months laughing, singing, creating games and stories, watching kids’ shows, and existing together. All the worries and questions of what I thought I was supposed to be (or what others thought I should be) at the ripe old age of 35 disappeared and were replaced with a solitary purpose of being a light in the world for someone else and letting that person be the light for me.

I recall a day in which Ben was tired of the entire process and threw a temper tantrum. I sat him on his bed and kneeled beside him so we were eye level. My plan was to comfort him. I looked into his big blue eyes brimming with tears, and I smiled. He smiled back. Without prompting, he put his arms around my neck and pulled me close to him. He pushed my hair back and kissed my forehead. In that instant, my guard came down and I experienced an unscripted act of love.

The purity of the moment changed me from wanting to orchestrate my love life to being open to a life full of love.

Maybe I haven’t written the perfect love story. Reality is far more interesting and beautiful, however, if given a chance to work itself out. A little boy smiling at me as we played dinosaurs together became more meaningful when we both tapped into our hearts to connect with one another, both of us forgetting he was tied to tubes of medicine. Both of us laughing so hard that I cried and he peed his pants and we squealed at the hilarity of the situation. Both of us were so steeped in our moments together that we rose above our fears, confusion, anxiety and the stress of his medical conditions. Those were mere details.

Whom I love had nothing to do with his bloated body that was pumped full of steroids or his bald head that was shaved before the chemo had a chance to take out clumps of his silken blonde hair. Whether his white cell count was high or low didn’t pertain to our time together. The possibility of a small infection that could have jeopardized his defunct immune system weighed not on our imaginary play or makeshift concerts on his toy instruments.

All that mattered, all that still matters, was the love that was guiding us through each moment, which in the end lasts longer than a two hour romantic comedy where all the lose ends are tied up with a cliched happy ending. I am more interested in showing up to every situation in my life as my truest self. Only a child could have taught me that.

My Benaroo
My Benaroo

The Sound of Music

Music is the great connector. The great entertainer. The great healer. During Ben’s journey to health, our entire family used music to help him cope. We all sincerely believe it helped him stay positive and happy during that scary and difficult time period.

While he was in the hospital during his chemotherapy and transplant/recovery time, our mom bought him a children’s music set: complete with drum, trumpet, harmonica, cymbals, maracas, and a whistle. He would spend a lot of time playing the instruments and making up songs about whatever was going on that day, regardless that each day brought the same routine in the same exact place. He called himself the band leader and he would have one of us push his IV cart around the small room while he directed his band and led his parade. He would play his trumpet and drum for his doctors and nurses, and proudly wait for their applause at the end of his impromptu concerts.

A music therapist came to see him a few times while he was in isolation at Children’s hospital. She brought along her guitar and other small instruments and would sing songs for him and let him play his instrument choice as well. He liked music therapy, but I think he was more prone to playing his trumpet and blowing his whistle and telling people when to stop or start than taking lessons from someone else. His music allowed him to have a sense of control and provided an escape during a time when he had no control over how he felt or what was happening to him and couldn’t escape the small room on the 9th floor.

Once he was released from the hospital and went to live at the hotel for his 3 month stay, Mom & Dad bought him a keyboard and a guitar. He loved them and spent many hours playing and creating songs and sounds. I remember many times when he and I would sit on the couch pretending we had an audience. I played a xylophone app on my iPhone and he played either the keyboard or guitar. We talked to the audience like we were performing a concert. I would say, “Ladies and gentlemen, please give a warm round of applause for our star of the evening, Benjamin Mattox.” We would pause for imagined applause and he would make a slight bow and address the audience by saying, “Well, everyone, today’s song is about potato chips and chip dip,” (or whatever his newest fad or focus was) and then end by saying, “I think you’re gonna like it.” I would comment on that statement, and he would begin playing his keyboard and singing about chip dip or Clorox wipes or Germ-X and I would plunk away on the xylophone and we would end by saying, “Thank you, thank you very much,” in our best Elvis impersonations.

Katy created little moments of escape for him with just a click of the button on her laptop. She showed him a variety of music and music videos on YouTube and other websites. They would watch clips of famous movies or singers on the snug two-seater couch in the hotel room. Before long, he knew words to Adele’s “Could Have Had It All,” and Katy Perry’s “Fireworks” songs as well as clips and bits from The Rat Pack in their heyday. He loved Wynton Marsalis’s “Trumpet concerto” and laughed until he cried whenever Katy played The Muppet’s “Manamana” video. He sat riveted when she showed him college drum corp competitions and got a special treat when we took him to view the Belleville East band competition. Although he couldn’t be around crowds, and he had to stand behind the fence in the distance, he was thrilled to hear the drum lines and watch the flag girls as they did their routines. And then there was Michael Jackson’s “Thriller” video. The moment Katy showed that to him,he was hooked. Almost every day he would request to watch “the Zombie” movie. He loved the story and the dancing and music so much that he learned the entire famous dance of Michael Jackson with the zombies. He even could quote some of Vincent Price’s monologue.

A family friend sent him a flutophone. One day in the summer, Dad, Mom and I were in the hotel room with Ben. The temperature was so hot outside that our car ride had been cut short. We were tired and bored. Mom came up with the idea of playing his instruments. We set up his little folding chair, hooked his backpack/IV Tacro over the chair out of his way, and sat him down. Dad picked up the maracas, Ben had the flute, and mom had the keyboard. She hit the “Demo” button and pretended to play. Ben giggled and joined in. In a short period, we had all forgotten that he was in a difficult situation and one we still weren’t sure he would get through. He was bloated and moody, tired and tied up to IV tubing that went into his chest. But, none of that mattered as we all began to play music. We laughed and recorded our mini-concerts and Ben would squeal with delight and all of our anxiety and fear of the situation melted away. Proof that laughter, music and lots of love are the best medicines for the heart, mind and spirit.

Car Rides & The Pill Police

Every day for those 3 months he was in the hotel, Ben went on a car ride. It was essential for everyone of us to get out of the 2 bedroom hotel suite and keep ourselves and Ben motivated even though it was a hot, dry summer with scorching sun and heat that sapped your energy within 5 minutes of standing outside. On the weekends, Katy and Todd would take him to his favorite places like The Landing and the Riverfront, or even to The Transportation Museum just outside of St. Louis city limits. Occasionally I would take him places too when I went there on Sundays so Katy and Todd could drive back home and Mom & Dad could take a little extra time driving over from Effingham to spend the week taking care of Ben. The majority of the time, the red Dodge caravan carried Dad, Mom, Ben & his tricycle across St. Louis area every day of the week. Their car rides would last for hours at a time, and whenever the mood hit them they would pack his lunch and head out to see what they could see. They once took him on a ferry ride in Grafton, Illinois, and drove him into Belleville to see the sights there. The majority of their car rides consisted of finding new and interesting places in the St. Louis area.

Their mornings typically began around 8 a.m. with Mom & Ben making a call to “The Chief of Pill Police”. Ben refused to take his important medicines in the morning, so mom started calling her long time friend and fellow nursing school graduate and registered nurse, Kass, to cajole Ben into taking his medicines. They came up with the pill police routine, and Kass would tell him on the phone, “This is the Chief of Pill Police. I heard you haven’t been taking your medicine. What is going on with you?” Ben would try and give some excuse, but Kass always found a way to talk him into taking his medicine. He would say to mom, “Grandma, turn the phone around so I can show her,” and he would open his mouth and stick out his tongue and “show” the Chief of Pill Police he had swallowed all of his medicine. Kass went along with the routine even though she couldn’t actually see he did it (though mom would always prompt her by saying things like, “Oh good,”). Mom always said Ben would get back on the phone and listen and say, “Uh huh,” “Ok,” and he would always end his conversation with the Chief of Pill Police by saying, “Bye. I love you.”

Once Dad was up and ready to go and everyone ate their breakfast, they would pack everything they wanted and needed for the day and head out to the mini-van. Their car rides usually started at The Crown Food Mart right across the street from the hotel. This was their “One Stop Shop” where they bought their snacks and drinks for the days outings (and also got quarters for their daily laundry at the hotel floor laundromat). Somewhere in the midst of the entire transplant process Ben became fascinated with spelling words. While Dad was inside, Ben said out loud, “C-R-O-W-N, Crown.”

Mom smiled and said to him, “Very good, Ben.”

He quickly asked, “Grandma, what does F-O-O-D spell?”

This prompted mom to help him spell everything out and explain their meanings. She spelled out crown and told him it is, “what a king wears,” and food is, “what we eat,” while mart is, “a grocery store”.

She continued crocheting and Ben sat in his car seat and thought for a minute. Then he said, “No, Grandma, it’s ‘Crown Mood Fart,” and laughed and laughed and laughed at his clever word play. To this day none of us can pass that gas station without compulsively saying outloud, “There’s Crown Mood Fart.”

“There’s good ol’ Crown Mood Fart.”

Another favorite “stomping ground” was The St. Louis Riverfront & Landing to check on the yellow and black helicopter that ran helicopter tours every 15 minutes. Ben dubbed it “The Bumblebee” because of its coloring. He was mesmerized by the helicopter and could hear it and see it almost always before the rest of us could. They would also drive past the Lewis & Clark statue and see how much the river had flooded based on whether or not the statue was covered up by any of the water. Another favorite site was The graffiti wall. They came down nearly every day to see what had changed. Other times they would drive over to the Lumiere Casino and look at the cool water fountain features and get a better view of the Martin Luther King Jr. Bridge which Ben adored.

View of the MLK Bridge from Illinois side.

View of MLK Bridge from The Landing in St. Louis.

Ben loved this fountain at the Lumiere Casino.
Another view of the Lumiere Casino fountains. Once Dad let Ben sit on his lap and look at the fountains. They were in the car for awhile when a security guard came out and told them they had to move. He took one look at Ben and got a sad look on his face. Mom and Dad told him what was going on, and the man said, “Stay as long as you want.”

Ben loved looking at the Arch and people watching.

Ben’s Bumblebee Helicopter.

Here is the Lewis & Clark statue. Most days the river was so flooded that the water was over their heads and only the standing man’s arm could be seen.

The Graffiti Wall on Wharf & Choteau Street by the river.

Another section of The Graffiti Wall.

After staying at The Landing, they would drive past The Graffiti Wall one last time and turn onto Choteau Street. (St. Louisans pronounce it “show-toe”.) Ben loved this street for one particular reason and that was to hear dad tell his childhood story. Dad has two uncles, Carl & Earl, who stuttered. When he was younger, Carl & Earl took Dad & his brother Dave to a baseball game in St. Louis. They got off the wrong street and were turned around and were arguing with one another. One of the uncles pointed his finger and said to the other, “You-you-you sh-sh-shoulda tur-tur-turned d-d-d-down Ch-Ch-Ch-Choteau,” as they passed by the street. Ben always squealed at Dad’s retelling of this story and usually said, “Tell it again, Grandpa,” and Dad would always oblige him and retell the story all over again. Ben became so familiar with his surroundings that whenever they got ready to turn on Choteau he would excitedly say, “Grandpa, t-t-t-turn on Ch-Ch-Ch-Choteau.”

You-you-you sh-sh-sh-shoulda t-t-turned on Ch-Ch-Choteau!

Many days a train would go “clickity-clack” over the tracks as they waited to get back into the hustle and bustle of the city from The Landing. Ben would get so excited and point out everything he noticed. They would all 3 talk about what they saw and point everything out. Not much escaped Ben’s attention. They would pass an indistinct street and he’d say, “There’s the Yellow Rocket,” and they would look over and see the yellow water tower above the working class neighborhood in South City. Or they would see all the school buses in the parking lot and Ben would get excited and he and Dad would comment on how many buses there seemed to be that day.

The Yellow Rocket water tower

One of Ben’s famous landmarks off Grand.

A lot of car rides took them to Bevo Mills, a restaurant in South City St. Louis. This landmark holds a special place in Mom’s & Dad’s hearts because they had a date there when they were a new couple. Dad was wearing his Navy uniform and Mom was dressed all pretty as well. Dad was driving mom’s beat up Ford and he parked them so far away from the entrance because he didn’t want the junked up car to ruin his image. (At least that’s how mom tells the story; Dad’s is more that he was just trying to spend more time walking with her. You be the judge.) Ben loved Bevo Mills and he would point out what he saw and beg the to stop so he could look at it some more. The windmill shape does make this a unique landmark in a city of brick buildings.

Bevo Mills in St. Louis

Another view of Bevo Mills

Often times on these car rides, they would pack up Ben’s tricycle or little motorcycle and take him to Tower Grove Park or The World’s Fair Pavilion in Forest Park. Mom thought it was so vitally important to get him to exercise and keep his stamina going. He would ride for as long as he could, though he was bloated and carrying around the extra weight of his Tacro IV backpack. When he tired out, they would all sit on a park bench and blow bubbles or people watch while they ate their lunch. At the World’s Fair Pavilion, they met Officer Dave. He immediately had a soft spot in his heart for Ben and visited with him every time they saw him. He even gave mom & dad his card and asked them to email him so he could know of Ben’s progress. At Tower Grove Park, they met a man, whose name was also Ben. He was playing his guitar. Ben was still at the stage where he could not get close to people and he had to wear his mask whenever new people were in his vicinity. That didn’t stop Guitar Playin’ Ben from visiting with our little Ben and playing his music for him.

Entrance to Tower Grove Park

One of the pretty and peaceful views in Tower Grove Park

A statue in Tower Grove Park. They always commented on it, but never stopped to figure out who it is representing.

One of the bridges Ben would ride his tricycle over in Tower Grove Park

They would blow bubbles and people watch from this park bench in Tower Grove Park.

Ben loved a specific church because he could see its steeple from his window up in room 801 at the hotel. They would sometimes drive by it and simply look and take in its beauty.

A beautiful church that Ben loved to look at.

A closer view of the church steeple Ben could see in the distance from the hotel window.

When they ran out of steam or the day was coming to a close, they would all head back to the hotel for another round of medicine and some quiet time in the hotel. Ben would watch his TV shows like “Caillou” or “Max & Ruby,” Mom would read or begin laundry, and Dad would nap or watch TV in the other room. As the late afternoon sun rolled across the sky, Mom said Ben would stop what he was doing and always go to the window and look out. He would stand there quietly for awhile simply watching all the comings and goings in the parking lot or watching the trains switch cars or watch the Metro go buy. Many times he would turn to her and say, “Look Grandma! The metro!” or “Look Grandma! The church! Can we go see the church tomorrow?” Mom would reply, “Yes, babe. We can go see it tomorrow,” and then the next day, after a phone call to the Chief of Pill Police, they would all pick up their gear and head out for another day of exploration.

Ben’s view of the world from room 801

Dr. B gave Ben the “thumbs up” on his health and lifted another restriction: he could be in small crowds out in the open. To celebrate, mom, dad & Ben took a ride on the Tom Sawyer River Boat. Ben was in heaven! Grandma & Grandpa look pretty happy too!

Mirror, Mirror

What shocked us all the most about the post-transplant procedure was the physical change Ben underwent. We could handle the hair loss, especially since Katy and Todd chose to shave his head before any big clumps of hair began falling out after chemotherapy. True, the chemotherapy process worried us all because it drained a lot out of his body, and we knew that even though it was helping him in the long run it was poisoning him in the interim. His morale was at its lowest then, but after the transplant, the healing process had begun.

When he got to the hotel to begin his 3 month post-transplant stay, he had a plethora of pills he had to take every single day, some twice a day. There was one for nausea, another one that was an anti-fungal, and yet another one that was an antibiotic. One pill was vital to keeping away Graft vs. Host Disease (a sign of possible bone marrow rejection). That pill was prednisone, a steroid. He was on 40 mg of it a day. He immediately began to show signs of the steroid’s side effects. His body became bloated. His cheeks were so chubby and shiny that his big blue eyes looked like two tiny buttons scrunched at the back of his face. His lips were swollen as were his arms, legs, and feet. After a few hours of wearing socks and shoes (or his house slippers), his poor little legs would be swollen around the socks, and he would have their elastic marks dug into his skin whenever he went barefoot.

Ben at age 3, 1 month before the bone marrow transplant

Here Ben is enjoying a day’s outing at the World’s Fair Pavilion in St. Louis. Though the steroids physically changed his body, he was still a little cuite pie!

He too was aware of his physical changes. We would catch him walking around (always attached to his backpack that carried his Tacro IV) and gazing into the closets’ full-length mirrors. He would turn sideways and look at himself, and then turn the other way. Then, he would turn his back to the mirror and look behind him to see his backside. None of us ever made a comment to him about his weight gain nor did we ever discourage him from glancing at himself in the mirror. We just let him do it and let him have his moment of curiosity. What pained us the most was that he noticed his change of appearance and kept his thoughts about it to himself. Or did he? Who knows? Maybe it didn’t bother him as much as it did us, but again, what 3 year old boy gazes at himself in the mirror constantly and checks his looks?

The steroid didn’t just bring about physical changes either. “Roid Rage Ben” came out at the most unexpected times. One minute he would be laughing and the next minute he would cry and get angry if his Curious George blanket fell on the floor. Or, if you told him “No,” he would grab you and say, “I’ll just kick you then,” or “I’ll rip your earrings out,” and then cry and say in confusion, “Why did I say that?” Once, on a car ride, dad stopped to get everyone drinks. He asked Ben what he wanted to eat or drink. Ben yelled at him, “Nothing!” Dad calmly asked, “Do you want a Kit Kat?” Ben yelled, “No!” Dad came back to the car and gave a drink to Katy and one for himself. Out of frustration, Ben cried and yelled, “Where’s my Kit Kat, you son of a bitch?” It’s become a funny story in our family, but at the time, it was pitiful and shocking to hear a young child not be able to control his emotions and use adult words. He got a talking to, but he also got his Kit Kat.

Car rides were an escape for everyone. They were daily as well. Our family became very familiar with St. Louis and the surrounding areas, and Ben had favorite haunts. It was also a chance to have some normalcy, and to eat gas station junk food. Food was an issue in general because most fresh foods were not a choice for Ben because of the possible bacteria they had on them or that could grow quickly if left out too long. Frozen or pre-packaged food was the way to go. Thus began Ben’s love (or should I say “addiction” to) chip dip. In our family, we like salty foods. And Ben got a taste of chip dip one day and liked it. A lot. It became his little treat, and though it added to his bloating, none of us could resist giving him something that would make him happy for a little bit. He loved chip dip so much that we had to stop the addiction, and he would cry when we told him that he couldn’t have chip dip for breakfast. I once saw him dip his cookie in chip dip and say, “Mmmm. Not bad.”

And so our coping mechanisms and survival skills kicked in until they became the new normal. We even grew accustomed to his new body shape, though if we thought too long and hard about it, our hearts hurt. He was still so darn cute, but every once in awhile, when he would cry or stop and check himself out in the mirror, we knew he was suffering. Fortunately, I had loaned my Macbook laptop to my parents so they could set up Skype sessions with Katy and Todd on the weekdays. That’s when I showed them all the fun software “Photo Booth.” Ben instantly loved it. It took your picture through the small, built in camera above the screen. The results looked as if you were in a photo booth. There are also options to have a wide variety of backdrops and camera tricks that make you look like you’re in a “House of Mirrors” at the circus. One day, at the table in the hotel suite, I showed Ben how it worked. I selected a funny camera trick. Not only did it distort his face, but mine as well. He giggled and wanted to try a new one. We laughed so hard we cried. We played with it for over an hour. Mom and Dad stopped what they were doing and joined in as well. We took a lot of pictures and saved them on the computer. We called Katy that night and told her about it. She started taking pictures with him on Photo Booth too every day when she and Todd came to take care of him on the weekends.

Every time we used the Photo Booth with him, he had a chance to see our faces morph in front of him. This gave us all hours of pleasure. I also feel it was a healthy way of dealing with his drastic physical changes. He got a chance to be not only a child, but a creator. He could select a scene and turn us into zombies and ghosts, or he could make our heads swirl into one another, or he could position the camera a certain way to make it look like he had only one eye. In any scenario he created, he was master of that physical form for that amount of time. Without even meaning to, we had started him on a path of experiencing the powers of his own imagination while also providing for us all hours of escape from his ordeal.

Photo Booth “Thermal Camera” option

Silly kids!

Grandma & Ben always had fun making funny faces.

Grandma & Ben as marshmallow heads!

Grandpa and Ben being cute & cheesy for the camera.

Creatures from another world!

Mom & son having a happy moment.

And I melt into you.

He became quite adept at using the computer and figured out how to create videos on Photo Booth. He was a showman and sang songs into the camera and imitated scenes from his favorite Disney movies. He was also a little mockingbird too. One evening, mom, dad & Ben were on the couch creating videos and this one stands out to all of us the most:

A few days later, we scrolled through the stored videos and came upon a new one. Ben apparently had been playing with the computer in his room and had recreated the “goiter” video on his own:

The steroids were eventually reduced to the point that Ben was eventually taken off of them. It took awhile for them to get processed out of his system. He now is healthy, strong and 100% pure boy. He goes to preschool, plays the same games as other kids, and enjoys a happy, normal life now. The drugs and the transplant saved his life for sure. But we all believe that humor saved his spirit.

Ben, 1 year post-transplant. A happy, healthy little boy

Can You Help Me, Dr. B.?

Before Ben was a year old, we began noticing how easily he bruised and that his skin appeared jaundiced. When Katy took Ben to his pediatrician, his pediatrician thought Ben had ITP (idiopathic thromboycytopenic purpura) – a bleeding disorder in which the immune system attacks platelets that help us clot. Many times ITP is found in children after a viral infection, and if caught early can be treated with medication. So, Ben’s pediatrician followed protocol and ordered some blood work. Using the “watch and wait” method, his doctor and parents kept an eye on Ben. Unfortunately, his condition never changed and in fact seemed to get worse as the weeks progressed. A friend of the family and a nurse at Barnes-Jewish Hospital in St. Louis, Kass, helped Katy & Todd find a hematologist at Children’s. Katy was originally to meet with another doctor, but her work schedule only allowed for her to take Fridays off so she could have the weekend to take Ben to Children’s and then back home (which is 3 hours away). The only doctor with any openings on Fridays was Dr. Jeffrey Bednarski.

Katy said her first impression of Dr. Bednarski was that she thought he was young. She wasn’t expecting someone close to her age to be a specialist. After the initial shock of this, Katy was not bothered at all because she immediately liked how Dr. Bednarski talked directly to her and Todd and also to Ben. She realized that he is an intelligent man who is methodical and trusts his intuition as well. Mom and Dad went to most of Ben’s appointments too, and Mom once told me that what she likes best about Dr. Bednarski is that he is never in a hurry. He takes time to have a genuine conversation with his patients and their families on whatever topic is presented to him. She said their conversations over the past few years have not only been pleasant, but therapeutic for her, too. His excellent bedside manner made us all secure and realize that Ben was in the care of someone who reveals his kindness, his good sense of humor, and compassion at every visit, regardless of how busy he is. For Katy, she was happy to see that Ben and Dr. Bednarski had an immediate bond. He always talked to Ben and joked around with him. After numerous trips to St. Louis and visits to the Hematology-Oncology Department at Children’s, Ben became very familiar with the office and with talking to and joking around with Dr. Bednarski – Dr. B as he later began calling him.

Early on in his visits with Ben and after countless blood tests, Katy and Mom asked Dr. B what he thought could possibly be the reason for Ben’s low platelet counts and easy bruising. He was very straight-forward and said his gut instinct told him that Ben’s symptoms aligned with a diagnosis of the rare blood disorder: congenital amegakeryocitic thrombocytopenia (CAMT). Yet, he didn’t rely solely on his gut. He ran every single test possible over the next few years to rule out everything from aplastic anemia to Von Willebrand disease. When all of those tests came back negative, he suggested that Katy & Todd should get a second opinion. He contacted a colleague at Boston’s Children’s Hospital there to verify his findings. Katy and Todd did request the second opinion, but when the doctor in Boston could not definitively diagnose the condition, Katy & Todd, and the rest of us, relied on Dr. B and trusted his guidance and expertise.

Once Ben had the diagnosis, Dr. B revealed the treatment: a bone marrow transplant. We learned this information in January 2011 and we were all shaken to the core. At the same time, we were relieved to know what was causing Ben’s low platelet levels and constant bruising. His condition at this point was so bad that holding his hand too tightly would cause a bruise; or if his car seat belts or pants were too tight he would get petechiae (small, busted capillaries that look like a bad red and purple rash). We were also relieved to know there was a treatment, regardless of how dangerous and possibly hopeless it was. Our family carried the motto: “Expect the worst, hope for the best, and pray you wind up somewhere in the middle” as a way to deal with the scary and unpredictable road that lay in front of us.

In March 2011, Ben had another appointment with Dr. B. Dr. B also had amazing news about finding a bone marrow match for Ben. He smiled really big and told Katy, Mom & Dad that they’re really excited when they have found 1 perfect match for a patient, amazed when they have 2, and almost in disbelief when they have 3. Mom said his face lit up and he grinned even bigger when he revealed the fact that through Be the Match foundation, 5 perfect matches were found. This is a rarity, for sure, and we were all so stunned we giggled whenever we recounted it to our family and friends.

As the time drew near for the beginning of the transplant procedure, Dr. B selected Ben’s perfect donor from those select 5. He wisely chose the donor who has the same rare blood type as Ben (O negative) and who also was willing to have his marrow extracted from his hip (the most painful of the 2 types of bone marrow draws). Dr. B mentioned that in theory any of the 5 would work, but he was trying to cut out as many complications he could possibly imagine, and felt that this particular choice would keep Ben’s body from creating anymore antibodies than necessary and could possibly aid in a far better acceptance of the marrow. His decision proved to be wise, and our family once again appreciated his forethought and attention to detail. Through the entire process, we would observe that his methods, decisions, and interactions with all of his patients garnered the respect of the nurses and doctors working in the Hematology-Oncology office.

Ben and Dr. B’s relationship blossomed over the summer of the transplant. During the most intense and stressful time last year, Dr. B created games with Ben. At checkups, he would start by pretending that if he tested Ben’s reflex on his knee that Ben’s hand would raise and hit himself on the back of the head. Dr. B let Ben show off this trick in front of interns and Ben loved every moment of being the star. They did this routine so often that it almost appeared to be like a Three Stooges bit. One day last summer, Ben, bald and bloated and getting tired of his small world of the hospital and the hotel, was anxious to get his surprise from the office (most children get to pick a toy from the toy box after their appointment). Dr. B heard about this and popped his head in the exam room and told Ben he had a surprise for him. Ben got excited and kept asking what it was. Dr. B jokingly responded, “You want a surprise? Here’s your surprise?” and he pretended to pick his nose and fling his fake booger at Ben. Ben squealed with delight and laughed so hard he got tears in his eyes. He still mimics Dr. B and goes through silly routines and jokes like that whenever he sees him.

After Ben was released from the isolation room at Children’s and went to live at the Marriott Residence Hotel nearby, Katy, Todd, Mom and Dad had to deal with Ben’s nightly medicine change of the Tacro IV through his Broviach tube. This task in itself was nerve-wracking, but was also dangerous. One false step, and things could go very wrong. Dr. B proved to be a great help in that regard as well. One day, he called Katy on his day off because his gut instinct told him to follow up and see if the office told her Ben’s Tacro levels. Katy was under the assumption that everything was fine, but Dr. B saw that Ben’s Tacro levels were too high and he instructed her to take him off the medicine immediately. By sacrificing his time away from home and his family on his day off,he ended up saving Ben’s life because the level was so high that Ben could have gone into shock and had seizures. Never were we more grateful for Dr. B’s judgment, quick thinking, and intuition than at that moment.

One day, post-transplant, mom and Katy were taking Ben to a weekly checkup. Ben still had to wear his blue mask in public places. As they were walking in to Children’s and crossing the bridge from the parking garage to the main lobby, Ben spotted Dr. B carrying his lunch from the cafeteria. Ben took off running and shouted, “Dr. B!!!!!!!” When he finally reached him, Ben grabbed Dr. B around the leg and hugged him tight. Dr. B grinned, patted Ben’s head with his free hand, and bent down and gave Ben a hug.

Healing a child from the inside out takes more than just science. It takes humor, compassion, intuition, and love. Dr. B is proof of that.

Ben & Dr. Bednarski at one of his post-transplant check-ups in the summer of 2011.

The Haircut

Todd feeding Ben the day they came home from the hospital.
In November of 2007, my nephew Ben came into this world with a headful of strawberry blonde hair. His hair became the centerpiece of our conversations. Whenever any of us held him, it was inevitable that our hands would run through his hair and feel its downy softness. We used to spike his hair straight up and then stare and smile at the chubby little boy sleeping peacefully in our laps.
Ben and his mohawk

As he grew, his hair lightened to a beautiful white blonde with strawberry highlights. It was still thick too. Many people referred to him as being a “towhead” because his hair color resembled that of a sun-bleached sandbar during low tide. The cowlick that swirled at the back of his head and the two that clashed right above his forehead conjured images of bygone days when little boys who looked like Opie Taylor or Dennis the Menace would put bullfrogs in their pockets and make mud pies in the backyard.
Ben’s towhead

All that changed days before Ben was scheduled to check in to Children’s Hospital for the bone marrow transplant. The doctor had told Katy and Todd (Ben’s parents) that Ben would have to go through a brutal regimen of chemotherapy in order to kill off his immune system and bone marrow, a preparation for his body to accept the new bone marrow he would receive. As many of you know, one of the possible side effects of chemotherapy is hair loss. Both Katy and Todd thought it would be too difficult to watch Ben lose his hair in clumps and be left with bald patches and possibly sores on his scalp. To help all of them cope, they took Ben outside to the driveway and sat him in a chair while Todd lovingly gave Ben his “summer buzz cut”.

Ben right before Todd gave him his haircut & 1 week before beginning bone marrow transplant process.

Todd shaving Ben’s head.

Ben being brave.

Showing off his new ‘do.

The shock of seeing his once beautiful head of hair being reduced to nothing but a burr cut made many of us realize there was no escaping the inevitable transplant and everything that goes with it, along with the fear of the constant unknown. I saw photos of his haircut in stages via my sister’s Facebook page. I had prepared myself for it, but when I saw the tuft of hair on the green grass, my heart broke and I began sobbing uncontrollably. Tears fell from my face and spilled onto my neck. I bent over to catch my breath and the tears poured onto my jeans, soaking me through to the skin. I cried because in those few strokes of the razor, Ben had lost some of his innocence. I cried for my sister and brother-in-law and the sheer courage it took for them to deal with this harsh reality. I cried for my parents because Ben is their one and only grandchild. I cried for myself because I couldn’t stop the memories of holding this precious kid in my arms and telling him stories and reading him books. I cried just because I didn’t know what else to do.

A tuft of hair in the grass

Over the course of the following months, we all had a specific role to play in Ben’s care and well-being. Katy took FMLA leave from work and stayed by Ben’s side every waking moment. Our parents took turns visiting and playing with Ben every day at the hospital and eventually paid for the hotel that would become everyone’s safe haven, home, fish bowl, and recovery rooms at once. I too chipped in daily and used all my energy to entertain Ben and allow my parents and sister many breaks from the stress of the entire process. Unfortunately, Todd had to work every day back home (which was 3 hours away) so he and Katy could have the income to pay for the bills that were already adding up. He visited every single weekend and spent and talked with them via Skype almost every day. Still, I’m sure he felt out of place and very angry that he couldn’t take a more direct role in helping Ben deal with the day to day experiences of life in a hospital isolation room or a 2 bedroom hotel room.

Towards the end of the chemotherapy, Ben’s hair (which was already beginning to grow out), began showing signs of the most common side effect. Little wisps of hair were falling in his face, landing in his mouth and causing him to gag. He was getting a few small bald patches, and every time we changed his clothes, more hair shook loose. Todd came to visit on July 4th weekend. Both he and Katy decided it was time to shave Ben’s head completely bald so no one would have to watch Ben’s hair come out in stages and lose morale or feel sad and scared. Todd asked one of the nurses for a razor. They brought him in a wet-dry razor. Todd told me they had to shave Ben’s head slowly as to make sure not to cut his scalp. It took almost an hour and Ben cried the entire time, which upset Todd. When Katy shaved Ben’s head, Todd became angry and began cursing the razor the nurse brought them. He told me that he knew it wasn’t the nurse’s fault, but he had to put his blame and anger somewhere because it was upsetting him and he felt like he had to get mad at someone so as to not break down. When they finished shaving his head, Todd says he remembers thinking that Ben had even a bigger head than before. Though it was odd to see his son completely bald, the fact that his head was nice and round was a great relief to him. Ben finally had a chance to look in the mirror and see what he looked like. He laughed and touched his head and simply stared at his reflection. Ben had such a positive attitude and wasn’t upset by the loss of hair which reassured Todd that they did the right thing.

Ben’s hair begins to fall out after chemotherapy.

It was more difficult watching him lose his hair the second time around.

Todd returned back home the next day. On his way, he called his sister, Kendra, and told her of his plan. When he got to her house, she brought out her clippers that she uses to cut her own boys’ hair, and had Todd sit out in her backyard. Todd’s buzz cut only took 20 minutes. He drove home and took a razor to it so as to smooth out any rough patches. After that, he showered and when he took a towel to his head so as to dry off, he realized it wasn’t the best idea: a towel to a freshly shaved head is like rubbing Velcro all over your scalp. Todd will tell anyone that shaving his head seemed like the logical thing to do since he was going bald any way. Those of us that know him, know better. This little boy who makes him giggle like a kid, who reenacts Star Wars light saber moves with him, and who melts his heart with the smallest of gestures, is the real reason Todd shaved his head. He did it as a way to show solidarity for his son who was in a fight for his life. He did it for the best reasons of all: for love.

Our sweet lil’ pumpkin head

Todd after he shaved his head to show solidarity with Ben

Todd & Ben sharing a relaxing moment