Finding Ninee » Sharing our parenting and special needs stories with heart and humor.

Our Land: For Ava, in Treatment

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Today’s Our Land was authored by the fabulous and wonderful Emily, of Oh Boy Mom.  I’ve recently mentioned her, but really, I cannot say enough amazing things about one of my first ever blog friends. She’s warm, funny, brilliant, gifted, and real. She writes about maintaing humor through motherhood, raising three boys, and, most recently, about her 9-year old Little Dude, who was diagnosed with a rare type of pediatric tumor. Emily realized that no matter what challenges each of us are going through, that laughter – and writing about it – is key to happiness.  If you don’t know her, go meet her. I promise that you won’t regret it. I’m honored to have her as a friend.

Our Land: For Ava, in Treatment

Moments after we arrived at our temporary apartment at Christopher’s Haven, a little girl with a blonde bob poked her head out of the door to see who was moving in. Seconds later, she bopped down the hall to meet us and seconds after that, she asked my son if he wanted to play with her in the communal playroom. Her mother immediately apologized for her assertiveness, explaining that they had been the only family living on the hallway for the past two weeks. Her daughter was starved for interaction with another kid.

Playing hard to get, my son declined and said, “maybe later.” He didn’t dare tell her that the real reason he didn’t want to play was because his uncle was already inside the apartment hooking up the used XBox machine that he managed to purchase at a bargain price. My son and I both knew that the XBox was going to be a key component to saving our sanity over the next six weeks living away from the usual comforts of home.

As we quickly discovered, the girl who lived next door to us on the hallway was named Ava [name changed to protect identity]. I knew Ava was there to receive proton radiation just like my son because that was why families stayed at Christopher’s Haven, an organization that provided housing to out-of-town families receiving this treatment at Massachusetts General Hospital. I didn’t know what her diagnosis was, but to me she looked healthy, strong, and completely un-phased by her illness. And she had more energy than five girls combined. I guessed she was about the same age as my son, around 8 or 9. I also assumed that she was in the early stages of treatment or perhaps she was wearing a wig or else maybe she did not have to endure as extensive a treatment regimen as my son.

I was wrong.

More than a little girl in treatment

During our first few days of living there, we’d bump into Ava in the hallway or at treatment and she was always happy and ready to engage with whomever was around. A few days before her treatment ended, her younger sister arrived. Their sisterly bond was palpable and sweet as they went everywhere hand in hand.

One day, I bumped into Ava’s mom in the laundry room of the building. On our way up on the elevator, I asked her if the weeks they had been there seemed to go fast or slow. I knew their treatment was coming to an end, while ours had just begun. Instead of answering my question, she replied a bit cryptically with, “well, we’re not having a good day today.” Ava’s mom looked tired and emotionally spent. I did not press any further, and wished her a good afternoon.

I was somewhat surprised by her reply, because I had seen Ava earlier and she was her usual bouncy self, bounding up and down the hallway with her sister. I couldn’t or maybe I didn’t want to understand why they had a bad day.

In the waiting room at the treatment center the next day, Ava’s father sat down to chat with me. Usually, families didn’t discuss specifics of their child’s illness. But Ava’s dad was different. He point blank asked me about my son’s situation. I felt awkward, but thought it would be rude if I didn’t ask in return about Ava’s illness.

“Brain stem,” he murmured.

I nodded, as if I knew what he was talking about. He told me she wasn’t able to have surgery and that she had been initially diagnosed when she was three.

I couldn’t believe that spunky Ava had been battling with this for at least five years.

When I got home later, I decided to Google “brain stem tumors” and I did not like what I read. Suddenly, I understood why Ava’s mother said they were having a bad day. And then I realized that although we were all living on the same floor for similar reasons, each child’s situation could be vastly different.

On Ava’s second to last day, she and her sister knocked on our apartment door. She asked if my son was home and if he wanted a rubber ball that lit up when you bounced it. The two girls were holding a box of balls and handing them out to kids on the hall.

“Sure, I bet he would,” I answered.

I invited the two girls in so they could hand the ball directly to my son. He thanked them, thought it was cool, bounced it a few times, and then went back to playing XBox.

I had this urge to hug Ava good-bye, but I restrained myself. I thanked the two girls for visiting and watched them skip out the door in their jeans and matching cowboy boots. We never saw Ava again because they left for their home in Minnesota while we were at our hospital appointment the next day.

However, I know I’ll always remember Ava, because she was more than a little girl with a fighting spirit.

Ava was hope.

And perhaps that’s why even though I barely knew Ava, I felt an attachment to her as if she was a niece or a cousin. People always say the same thing when referring to children who fight serious illnesses: “Kids are resilient.” I completely agree.

And kids like Ava? Ava is exceptional.

Originally on Brain, ChildSee? I told you Emily is amazing.

EmilyEmily Cappo is a writer and blogger at Oh Boy Mom. She is a regular contributor at Huffington Post and has also appeared in a Huff Post Live segment. She has recently completed a memoir, “Hope All Is Well” which chronicles mid-life loss, re-connection, and revelation.


  • Kenya G. Johnson - Beautiful Emily! You gave me goosebumps and brought tears to my eyes at Ava is hope. She has a beautiful spirit. Kids ARE resilient!August 13, 2014 – 9:58 amReplyCancel

    • Kristi Campbell - Kids really are resilient and awesome. Thanks so much, Kenya! I love this one, too!August 13, 2014 – 10:11 amReplyCancel

  • Janine Huldie - Like Kenya, i am now fighting back tears and thank you for sharing Ava’s story here with us today. Kids are definitely resilient and have seen this with my own kids when they hurt themselves (maybe not on the same level), but still does amaze me so.August 13, 2014 – 10:45 amReplyCancel

    • Kristi Campbell - Janine, thank you so much and you know, they are resilient and really, the same level doesn’t matter (I mean it does, but everybody’s here is still here and our own realities are our own and yes, resilience is resilience, if that makes sense!!!). It amazes me, too!!!August 13, 2014 – 9:03 pmReplyCancel

  • Dana - The human spirit amazes me, and Ava’s spirit certainly is exceptional. I hope it continues to shine – thank you for sharing your story here, Emily.August 13, 2014 – 11:37 amReplyCancel

    • Kristi Campbell - I agree that Ava is amazing and that so is Emily. Here’s to sharing pediatric cancer stories that are full of bouncing balls and hope.August 13, 2014 – 10:38 pmReplyCancel

  • Mike - Ok, now that I’ve wiped the tears out of my eyes temporarily I will hopefully be able to type a coherent response. This was incredibly powerful, Emily. We all have our own interpretation of life events and I try to see as many of mine from a spiritual perspective. I’m not a religious person whatsoever. The second I read the part about Ava bouncing down the hall to meet you on your first day it hit me in my gut. She’s an angel and an old soul. Meaning on a celestial plane. I truly believe in that and her energy and will to overcome and adapt is on one level. Her ability to express outwardly kindness, warmth and a sense of comfort is beyond reproach. We bless her so very much with right and perfect health in her journey. And in the same step we send as many heartfelt blessings to your son. Despite your difficult moments please always send him positive energy and believe in nothing more of his ability to heal and overcome this horrible deck of cards he was dealt far too early in his precious life. If he’s ever having a really rough day have him look up my Golden Retriever, Phoenix. He’s a cancer survivor. Love and blessings to you and your family. Thank you for sharing Emily and her story with us, Kristi 🙂August 13, 2014 – 12:49 pmReplyCancel

    • Emily - Thank you Mike for such a thoughtful and inspiring reply – it means a lot that you wanted to take the time to write your thoughts about Ava and kids like her and my son. I’m not a religious person either and I’ve struggled with how to deal with these challenges without having a place of worship and religious community to rely upon. It truly helps to know that people genuinely care and want to support us. I’m going to keep re-reading your words because I find them to be uplifting so thank you!! And Kristi, thank you so much again for sharing my post on your Our Land space…I am realizing that not only was I describing empathy for another child enduring an awful challenge, but I am receiving wonderful empathetic replies to my story too.:)August 13, 2014 – 4:01 pmReplyCancel

    • Kristi Campbell - Both to Mike and Phoenix and Emily –
      (for the history part, Emily, Mike’s baby, who happens to be a Golden Retriever) battled a cancer that the doctors told him that he could not win, and yet, he did. He’s cancer-free. Am only mentioning that because I’m not sure whether the two of you are familiar with one another or not – if not, you probably would like to be because you’re both amazing and lovely and awesome).
      Mike, I agree that Ava is either an old soul or one just gifted with living in the now. I hope so much that it’s not her disease that has made her be the one to live in the now. My takeaway is that we never know anybody’s stories, that all of ours are amazing, and important, and REAL and right here, now. And that they’re all meaningful and important. Also well I love you guys. For real.August 13, 2014 – 10:43 pmReplyCancel

      • Emily - Aw thanks Kristi and love you right back! I did see from Mike’s response that he has a Golden Retriever who survived cancer…I am a HUGE dog lover so I adore that story even more! And Kristi, your takeaway is spot on.:)August 14, 2014 – 5:04 pmReplyCancel

  • Tamara - Wiping tears away too. And I do read Emily’s blog regularly! She’s a fantastic writer.August 13, 2014 – 4:59 pmReplyCancel

    • Emily - Tamara, thank you for reading my post here and for being a regular reader of my blog too. 🙂August 13, 2014 – 7:07 pmReplyCancel

    • Kristi Campbell - She so is. And I promise, that you are SO NOT screwed. You got this, mama. I swear.August 13, 2014 – 10:49 pmReplyCancel

  • Don - Whew, I thought there was going to be a sad ending and I was going to bawl! I can picture Ava and the type of kid she is and I love her already. Great read. Hope your boy is doing well.August 13, 2014 – 7:57 pmReplyCancel

    • Emily - Thanks Don and glad you enjoyed it and that I painted a picture of Ava that you can embrace…my son is doing well and is actually away at sleepaway camp right now! 🙂August 13, 2014 – 8:38 pmReplyCancel

    • Kristi Campbell - I KNOW. Me, too. Here’s to the happyfuckingendings and life being better than we thought it may be!!August 13, 2014 – 10:50 pmReplyCancel

  • Lisa @ Golden Spoons - What an angel Ava was to you and, I’m sure, many others! The spirit of children is amazing and often much more resilient than adults.August 13, 2014 – 11:04 pmReplyCancel

  • My Inner Chick - We can all learn great life lessons from Ava.
    She is an angel on earth & she shall be one in heaven, as well.August 14, 2014 – 1:53 amReplyCancel

    • Kristi Campbell - I agree that we can all learn amazing life lessons from Ava and all the people who are like her!August 14, 2014 – 10:12 amReplyCancel

  • Out One Ear - Linda Atwell - A lovely story in the mist of sadness. Ava is inspirational. And so are you.August 14, 2014 – 2:46 amReplyCancel

  • K - So beautiful! Thank you so much for sharing this with us!August 14, 2014 – 9:41 amReplyCancel

  • Elizabeth - What a beautiful story. I hope all ended well and happily.August 14, 2014 – 2:33 pmReplyCancel

  • Rebecca - Gosh, this post is incredibly humbling and puts my whines in perspective. That Ava really is something but I can’t help but note that you are so strong and selfless yourself! I can’t wait to read more from you, thanks for changing my dayAugust 14, 2014 – 8:03 pmReplyCancel

    • Kristi Campbell - Rebecca, I think this post puts all of our whines in perspective, but also reminds us that all of our whines are OURS and important. When we struggle, and grieve, and feel sad, it’s okay to do so – I don’t think the “but it could be worse” is helpful, until, well, it is helpful because it always can be, if that makes sense. Because all of our challenges are ours and here, in our homes. And that’s okay. But it’s also important to remember that we don’t know what the neighbors’ struggles are, if that makes sense!August 14, 2014 – 11:47 pmReplyCancel

    • Emily - Thanks Rebecca and I’m flattered in an odd way that my post had such a day-changing effect on you…I agree with Kristi’s comments and it sort of reminds me of that meme that is always floating around Facebook, which reads something like (I can’t recall the exact words): “Always smile at people because you never know what challenge they are facing.” It’s true!August 15, 2014 – 7:34 pmReplyCancel

  • Sandy Ramsey - Such a beautiful story about a true warrior. I know we all have our own struggles and our own issues and they are real to each of us. But Ava’s story can certainly put things in perspective. It sounds to me like Ava is doing what we should all do, ill or not, and that’s live the life we are given to its fullest. I don’t think I’ll be forgetting about this young girl any time soon. Thank you so much for sharing this.August 15, 2014 – 7:56 pmReplyCancel

    • Kristi Campbell - Sandy, I completely agree that Ava’s story puts things into perspective. Here’s to all of us living the lives we have to their fullest!!August 19, 2014 – 1:27 pmReplyCancel

  • marcia @ Menopausal Mother - What an amazing little girl. As a parent, I cannot evenbegin to fathom what the family was feeling. And all the while Ava had a smile on her face through adversity. Incredible.August 15, 2014 – 10:31 pmReplyCancel

    • Kristi Campbell - Marcia, I agree that she seems like one amazing little girl! Incredible, indeed.August 19, 2014 – 1:28 pmReplyCancel

  • Yvonne - Oh, what a lot you and your son have been through Emily. I think you are right that you will always remember Ava. People like her, who come into our lives at such difficult times remain somehow. Sorry this is so pathetic – I can’t find the words to say what I mean!
    I’ll just say I wish you and your son well, and that Ava also thrives.August 16, 2014 – 11:08 amReplyCancel

    • Kristi Campbell - Yvonne, I think I know exactly what you mean and it’s not pathetic at all. I think that Ava will remain for all of us who had the gift of reading about her amazing, bright self.August 19, 2014 – 1:29 pmReplyCancel

  • Brittnei - Oh my! Ava is so amazingly precious. It is also so hard for me to read stories like this. They tend to feel so personal like I know the people and they are in my life. She is definitely an example of hope for us all. 🙂August 18, 2014 – 2:23 pmReplyCancel

    • Kristi Campbell - I agree about her being an example of hope for all of us and know what you mean about stories such as this being personal and affecting us deeply.August 19, 2014 – 1:30 pmReplyCancel

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