September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics. The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action. Read more about this series and childhood cancer HERE.
By Deb Fuller
What the heck? That is a classic Hope saying. She had several, but that is my favorite. She would hold her one good arm out and flip her hand back look at Dr. Stew and say “What the heck?” pertaining to whatever he was saying at the moment.
Why am I having such a hard time writing about my sweet girl? What do I want you to know about? What words can I possibly share regarding awareness and research of childhood cancers that have not already been shared by much better writers than I?
Dates are things that for whatever reason stand out in my head. Hope was born in South Korea on 6/26/97 and we found out she was ours on 9/19/97. I always thought it odd that for 85 days I did not know my daughter was even alive. She came home to her forever family on 1/23/98 and thus it began.
Hope was funny, smart, sassy, sincere, loving, and empathetic. Hope was important. She had potential and she would have made a difference in the world. She wanted to be a doctor or nurse or a pastor. We cannot possibly measure the loss of her life not only to those of us who loved her, but to the world in general. She loved music and theater and her brother and she just loved life.
She was only 12 on 7/29/09 when she was diagnosed with DIPG. Hope Alizah Kimlee Fuller died 224 days later on 3/10/10. 35 of those days were spent inpatient. So truth be told she only lived for 189 days because after we entered the hospital she never walked again or really talked again or watched TV again or texted a friend again or went to the bathroom by herself again or even ate by herself again. Those 35 days of beauty and the beast were some of the most tenderly painful moments I think I will ever experience.
Sometimes the beauty and the beast of those days are imperfectly blended so that when I recount them now my heart just aches with the memory, but at the same time I want nothing more than to remember each sacred moment. One that comes to mind is after we had been inpatient for ten days.
Hope had not been awake or spoken to us at all for a couple of days. Yet on this day whenever her buddy Grace (Grace was Hope’s lifelong best friend who only left the hospital for 1 of the 35 days we were there) would sit down next to her or lean over the rail to hug her Hope would pop her big brown eyes open as if she was the same girl she had always been. Inside she was the same; you see DIPG doesn’t attack the cognitive center so while you lay slowing dying you are aware of it all.
Hope loved Grace and while I wasn’t privy to their secret conversations there was a lot of info being communicated through Hope’s beautiful eyes. Several days later she was suddenly able to get a few words out “I don’t want to hurt any more” while Jay and I were holding her hands on opposite sides of the bed. It was a gift that she was able to speak and that we clearly understood her. I told her how much we loved her and how sorry we were that we couldn’t take the pain away and that if she was ready it was OK. She could relax and we would be fine. She replied “I’m ready.” It was 2/10/10.
When you are under palliative care from really the first day of treatment you are not left with any real illusions that you might beat this. As we lay inpatient over the course of the 35 days there were many highs and lows when we thought she would die and then she surprised us and fought on, even after she told me she was ready on the 10th. Just when I would begin to think that I wouldn’t hear her voice ever again she surprised me on the 17th with three little words “lay with me.”
One time when she woke up for just a bit she asked for zucchini bread…now that was classic Hope! The days were so filled with ups and downs and just hours of waiting and watching and wondering that it felt as if time actually stopped. A couple of days later on the 20th Hope woke up and called my name so clearly that I jumped. She wanted to know when I was going home and I told her that as long as she was in the hospital it was our home. She nodded in agreement and I told her I’d always be by her side.
I asked when she thought she would go home and her response was “never.” We talked about that being OK and that we loved her so much and how much we would miss her, but if it was time, she could go. I asked her when she thought she’d go home to God and she said “I don’t know.” Just like that, matter of fact and all. The next day she actually made us laugh out loud as she mustered the strength to screw up her nose and make a horrible face to indicate that she thought a meatloaf bakery was disgusting. On the 24th she woke up and said “Hi Mommy, I love you.”
All throughout those days Hope continued to be Hope. She had secret whispers with her ‘BFF’ Nora. Nora was the yin to Hope’s yang. They were soul sisters who were not given enough time to love each other on earth. One time she used a mix of words and gestures to try to get the top secret title of the next summer children’s theater production. She promised not to tell anyone. Another night, somewhere around the 1st of March, she managed to get out two particularly funny statements. Now they weren’t clear as a bell but she said “My butt hurts my gluteus maximus,” and then she chuckled, knowing just how funny that sounded even to her. She overheard us talking and said “Wow. I didn’t know Dairy Queen opened today.”
On 3/8/10 Hope spoke her last words to us and with the help of blinking and hand squeezes we were able to say our good byes. It was after midnight when she asked me to get J.D. and Grace and her Dad to come back to our room. She was so alert and she was crying. We were able to decipher that she was afraid, she was scared. My worst fear for her. The three of us lay on all sides of her and we talked. We laughed. We cried. She needed us to tell her one more time that it was OK for her to go. On 3/10/10 at 2:58 in the morning my sweet Asian princess left for heaven.
I am sure you will agree that Hope died like she was living; on her own time based on her own agenda.
What the heck? I guess I wanted you to know that Hope died. That her life and death hold meaning and purpose and that you need to become involved. The most important and most precious natural resources in the country are dying.
Please be aware of the facts about pediatric brain cancer and the organizations and foundations which focus on brain cancer; acknowledge brain cancer awareness efforts, support political action related to children’s cancer research and promote awareness of it.
Through our stories, may your interests be peaked, your desire to help increase, and your increased desire lead to action. May your actions speak louder than words. Hope has been gone for 3 years 5 months 2 weeks and 2 days.
I am most grateful to Deb for sharing such intimate moments, her last precious moments with Hope, so that we may learn. Thank you, Deb.
If you’re looking for all of the posts in the Childhood Cancer Stories: The September Series, you can find them catalogued HERE.
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Mary Tyler Mom 