This is the twenty-ninth of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post will cover one month of Donna’s thirty-one months of treatment.
Last month ended with Mary Tyler Dad and I clutching to The Bubble. But you can’t clutch a bubble, can you? It just doesn’t work. The bubble pops and — poof — it’s like it never existed in the first place.
The day after Donna’s fourth birthday, we had a set of scans done to determine what type of effect, if any, the oral chemo was having on her brain, spine and lungs. Late that evening we got a call from our oncologist that there was a pneumothorax in Donna’s left lung. Left untreated, it could result in her death, suddenly and without warning, and, he said, it would not be a pretty death.
The recommendation was to be hospitalized and have Donna treated with “pure oxygen.” The idea is that the pureness of the oxygen would encourage the lung to seal itself, correcting the problem. Most likely, the lesions on Donna’s lungs, those “immunerable” lesions, were eating away at her tissue. It was unbelievable that our daughter with a brain tumor would die of lung disease.
As we had done, we used Donna as our guide. Her quality of life was still outstanding. As cumbersome as the meds were, she was tolerating them remarkably well and, as she was wont to do, thriving. The docs agreed that because of that, treatment was in order. Mary Tyler Dad and Donna packed up and were admitted that evening. This was our first hospital stay since Indy and we opted for a man:man defense. I would be at home nights to nurse Mary Tyler Son, and Donna and Daddy would have sleepovers at the hospital until discharge.
Well, the pure oxygen didn’t work. Possibly because Donna hated the mask that was required for it to be administered. When you know your child’s time is so limited, to see her in a bed strapped to a mask she fears, will wreck you. All docs involved moved to the idea of a chest tube to drain the liquid gathering in Donna’s chest. Ironically, it was called a “pig tail.” Such a benign name for such a tool of torture.
It was inserted easily, under anesthetia. When Donna came to, she was lovely and hungry. Three hours later, after the anesthetia wore off, Donna began to experience pain. Deep pain. Wounding pain. Intense pain. Donna begged for medicine, wailing. Nothing could be administered quickly enough. And God love them, as hard as the team tried, as responsive as they were to her pleas, Donna’s pain was difficult to manage for twelve hours.
Once morphine on a constant drip had been instituted, things calmed down. Donna napped. Mary Tyler Dad and I took a break in the hall that quickly dissolved into our own tears. Mary Tyler Dad wrote, “We are now the scary parents at the end of the hall who have no more options open. We feared them, and now we are them.”
Those of you who are Cancer Parents know who I am talking about. The crying, sobbing, broken parents who wail loudly or quietly, but you hear it just the same. When you are new to treatment, you see them and their displays in the halls — the only place available to step away from your child and the crushing news that there are no more options for their child. You turn away because their pain is too close, too scary and too unbearable. It is their pain, not your pain, and you don’t want to be near it. Until it is your turn and it becomes your pain.
All apologies to the parents who witnessed the depth of our pain that evening.
Slowly, the chest tube did its work. The hole in Donna’s lung sealed and we went home late on a Monday night. Tuesday was lovely. Our girl was back! She was the same brightful, shiny girl we remembered. The pain seemed a steep price to pay, but the right choice to have made. We were grateful.
Early Wednesday morning, though, Donna, sleeping in bed between us, seemed different. Her breath was fluttery and rapid at the same time. Shallow. I noticed it, Mary Tyler Dad noticed it. Moments later, Donna awoke. “Are you having trouble breathing, girl?” I asked. “Yes, Mama.” We called the hospital and were told to come in straight away. Donna was not comfortable. Unhappy. Listless.
As we pulled into the hospital driveway, we ran into Dr. Stew who asked after our girl. When he saw her, he told us he would be to the ER soon. The docs did their thing, more x-rays. Horrible x-rays that involved Donna sitting in a wood chair, elevated above us, with her arms outstretched, and straps holding her thin wrists to a board behind her. Christ-like and execution-like simultaneously. The memory of her strapped to that board will plague me until the day I die.
Mysteriously, we got word that all was well, but she was so unhappy, so uncomfortable. She missed her brother and grandmother. When we showed her a photo of Mary Tyler Son, Donna slapped it away and screamed, “NO, the REAL one!” A few moments later, upon further review, a new pneumothorax was found on the right lung. The dreaded oxygen was advised and started again. More masks.
Donna fell into a deep sleep. She was unarousable. Our team had assembled across the hall and asked us to step out and talk with them about a plan. Mary Tyler Dad wrote at the time:
“We decided with great sadness that we will be together as a family, at home, and we will let the disease take its course.
Why? How can we do this? We’ve said often among ourselves that Donna would provide our cues. She was listless, exhausted. She wanted to be home with her brother. We have fought and fought and fought this fucking thing. It has taken the deadliest poisons and hottest burns and sharpest knives and just grew right back. No matter what, her time is limited now. We decided today that instead of trying to make it as long as possible, we will make that time as comfortable as possible.”
We said heartfelt and tearful goodbyes to these amazing humans who were responsible for caring for our Donna. Who worked like hell to allow Donna to grow from a toddler to a young child. Our neurosurgeon came down in her scrubs, fresh from surgery when she heard the news. Four of our nurses from the oncology unit came down. And our beloved Dr. Stew, who will never understand the esteem in which we hold him so dear to us.
Science had failed our girl, not these beautiful people.
Advance directives were signed, arrangements were made for oxygen to be brought to us. Palliative care was quickly changed to hospice care. An administrative box was checked and our girl would die. Calls were made and family from the east coast scheduled flights to be with us for Donna’s death. They brought black to wear.
We walked across the hall, back into the ER, to find Donna resting comfortably with a favorite volunteer at her side. Shortly after we arrived, Donna awoke. She smiled. She was attentive and affectionate. We told her we were going home. She was happy. We took one last tour of 4 West and it was anticlimactic. Nurses were busy with other patients. Life moves on, even in Cancerville.
Walking out of the hospital, I felt liberated. Fuck you, cancer.
When we got home, Donna cheered to see her Da and Auntie. She ate, and ate a lot. She wondered when we would go to the Target. When we would go to the Target? What the what? It never worked this way in Lifetime movies.
Well, we went to the Target. The last thing I had said to Donna the night before was that we would go to Target in the morning. “The one with the escalator, Mama?” she had asked, hopefully. “Yes, Donna.” We spoiled our girl rotten that night with Fruit Loops (“rainbow cheerios” is what Donna called them and they were contraband in our home) and frozen pizza and games and toys. Target is still the promised land for me.
Donna woke the next day and wondered what was for breakfast. That night she made a guest appearance at the annual Run for Gus, a 5K that raises funds for pediatric brain tumor research at Children’s. She wore her tutu and posed with the runners of Team Dancing Donna wearing their own tutus. Donna had some things to do and didn’t get the memo from cancer saying her time had come. Family joined us at the event and we celebrated and were happy, so happy.
Until the Cancer Mom spoke, a featured speaker to rally the runners. She talked about her own daughter and the brain tumor she had fought, “successfully.” She proclaimed that she “wouldn’t let cancer take her daughter.” Now why hadn’t I thought of that? I had no idea it was possible to simply refuse cancer my daughter. Who knew? Bitter humor, I know, please forgive me, but words matter, people. They do.
Donna woke the next morning and the next and the next and the next. Always demanding to know, “What’s for breakfast?” I had a hard time sleeping next to her. I would fall asleep easily, my head searching for the comfort of girl and pillow, but inevitably, I would wake and watch Donna’s breathing. It was anxiety provoking. I learned to move into the living room and soothe my fears with bad tee vee. It was easier than sitting in the darkness watching and waiting.
So much more happened this month. Donna’s guardian angel, her dance teacher, her CBLO (Chief Bucket List Officer), arranged for a private dance party for her and her playmates at the studio where she took lessons. This same gal arranged for the Field Museum to gift Donna with a box of all things dinosaur, as Donna was obsessed with them and their bones. And for the Joffrey Ballet Company to send along a pair of prima ballernia toe shoes, poster, and coffee table book about the Company. And for the Auditorium Theater to open their doors on a weekday afternoon so that the sweetest dancer in the world could dance on one of the finest stages that exist. All of these things happened just days after that last ER visit. Life was improbably good. We made a new bubble and climbed right in.
Mary Tyler Mom 
Sigh. I don’t have words to say how I feel. Terribly sad, trying to be hopeful as I read, a bit more calm oddly.
I mentioned in a previous comment I keep trying to think of what I / we the readers can do differently. I see that your team still runs the Run for Gus race but that it just took place. I would love to participate and help if your team would have it. I believe that a lot of your readers would agree. Perhaps you can create a distribution list now as the series finishes on people who are interested for next year, or other races/events that you participate in?
Letting Donna guide me as well through your story…
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Carla, thank you for that. On Sunday, October 2, I will write a post about how folks can help. I have heard from so many that want to do something. I will identify three charities that do meaningfull work (full disclosure: mine is one of them) related to pediatric cancer or Donna. Thank you for your interest. I am stunned that folks want to pur words into actions.
Also, I will be hosting a live chat on Monday afternoon, 10/3, from 1-2pm CST. I will post about that this afternoon. I can’t wait to actually interact with Donna’s new fan club. It makes my mother’s heart proud. Thank you. MTM
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Thank you so much for sharing Donna with us! I can’t remember a time I have been so moved and inspired by something. Whether it is Donna’s unfailing exuberance for life or the strength of Mary Tyler Parents to fight this battle with such grace, I know that I will carry Donna’s story in my heart for a long, long time. I know that in a small way, your story makes me a better parent. This month I have found myself much more conscious of my two little boys and of the precious memories they give me everyday.
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I’m still reading, still here and I hope you feel all the love and support that is out there for you and your family. I will remember Donna, long after these entries come to an end. Donna is beyond beautiful; her photos remind me of my youngest daughter at that age, which makes the pain of reading this even more intense. Thank you for being so brave in sharing this. You honor Donna in every word you write, and I just know she is smiling down on you, loving you. How blessed she was to have you and your husband for parents. God bless you and your family.
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She is always smiling! Every time I start to cry I see a picture of her smiling. She has truly touched my heart! Thank you Mary Tyler Mom. 🙂
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Mary Tyler Mom….I’m sure you get this a lot. You have been a true inspiration to me. I can only imagine what you felt and had to endure over that terrifying 30 months. You’ve held your head high, have been brutally honest, and I can’t speak for everyone of us, but you’ve made me realize that true strength comes from within. I’ve held my kids tighter and made sure I profess my love for them everyday. (even though it completely embarrasses my oldest)! So I thank you for that (and many other things). I recently lost my father to cancer and you made me realize that the denial I was in was not the way to handle it. Regrets I’ll never have the chance to take back. I now know if and unfortunately the next time I’m faced with living in Cancerville, it will be different this time.
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By sharing your story, you have helped me come to terms with my own grief over the loss of my own child. Thank you so much for sharing the life of your beloved Donna. I feel as though I can face many more days to come.
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To this point I’ve been chickensh*t to write a comment thinking that whatever I say is going to be pure jibberish. All I know is that every photo wrecks me. Donna is so beautiful. Yesterday I was thinking about this, and we are all terminal one way or the other. Donna’s story has reminded me that we need to live in the moment and just be. You have made me thankful on so many levels, and you’ve broken my heart. I feel a major disconnect that somehow this story turns out differently…that this weekend I’ll see the family with Donna in tow at that Target with the escalators.
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I keep re-reading these last few entries, hoping that somehow the story will be different this time. And it’s not. Such a sweet, vibrant girl.
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Each morning, the first thing I do after logging into my computer is to check and see if Donna’s post is in. If not, I check repeatedly throughout the day until it is. It is a very good thing that I work from home because, otherwise, my officemates would see me in tears every day. Somehow I feel that to show my respect for Donna and her family, reading her story must be a priority…and it is.
MTM (and MTD) have showed such grace and generosity in sharing Donna with us. I feel as if I could recognize that little grin anywhere and am confident that that image lives every day in their hearts. I can not imagine the pain of losing a child or the strength it takes to move forward every day, one step at a time.
My very wise Grandmother once told me that God only tests us to the limits of our endurance and therefore the strong are tested more…and have an obligation to support those who are weaker. I remember replying that I surely had passed enough tests (in five years I endured a melanoma that gave me a 50/50 chance of living five years, a miscarriage, and a divorce that left me with two small children)…her answer was that I had strength in reserve and needed to share it. I hope that I have done that in some small way over the years and I hope that I can always do so.
MTM and MTD are doing that now on Donna’s behalf. Through pain that is very personal and tangible they have reached out to share their strength and story with all of us. I hope that the process of sharing Donna’s story lessens their grief in some small way and that we all take away a little of their giving spirit and Donna’s joyful approach to life to share with those around us. Each of us who have read her story has an obligation to ensure that her memory and grace lives on in our lives a little every day and that we use the strength of her spirit to make a difference. Thak you MTM.
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I have cried nearly every day for the past month reading Donna’s story. I have cried little silent tears, sitting at my desk at work, wobbly-smiled, snuffly-nosed, red rimmed-eyes crying. And I think for a while my coworkers thought I’d gone a little loony. Then I sent them Donna’s story and we read it and cried about it together… and they sent it to their friends and their families. I wonder if it’s possible to know just how far Donna’s Story has traveled in this past month. We’re all loving her. Each day our hearts break a little with yours and we help you remember her legacy. Thank you so much for sharing her with us.
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Dear MTM,
As I continue to read your story, I am so grateful to be the mother of a 3 year old boy. Grateful that he is alive and well, no doubt. But more than that, being a mom is allowing me to feel more intensely the hope, joy, love, amazement, despair, anger, sadness…the range of emotions you evoke through your beautiful writing. Being a mom also gives me a greater appreciation of just how spectacular your daughter Donna is (yes, is, because she lives on in our hearts and we can visit her photos, her YouTube videos, your eloquent writing over and over, day after day, and remember her).
As a scientist , the other strong feeling welling up inside me is frustration – frustration that Science couldn’t do good enough by Donna. The Nicholas Conor Institute in San Diego takes a unique approach to develop cancer therapies for children – increasing the development and accessibility of new treatments, but also using genetic profiling as a way to develop more effective, personalized treatments for the children.
The Institute’s existence has been on the fringes of my awareness for a few years now. Not anymore, not after reading about Donna. Now I will get more involved. Thanks for the narrative of your courageous life journey with Donna, and thanks for inspiring people to act on behalf of children who are snatched by “goddamn cancer.”
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Well I finally broke down my husband and he agreed to let me read him Donnas Cancer Story. So I started at the begining, and read and read and read some more. I don’t know it it was listening to the story cross my lips that made the difference, but I started to cry. I don’t think either of us will ever forget Donna. We both love her so. I have a huge dread in my gut about reading the next few days, like if I don’t read it, it won’t be true. I know it will be hard. I am thinking of you MTM, and MTD, and of course MTS. All of my love.
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Hi Mary Tyler,
I just wanted to thank you. I did my clinical social work internship in pediatric oncology, and I spent nine months in a valiant battle to not feel. I worked with kids of all ages and stages of treatment, saw families cope in so many different ways, and tried to strike that balance between caring enough to help my families and not caring so much that I would show emotion in front of the team or let the misery invade my personal life as a carefree college kid. I was supposed to have “boundaries.” The kids who would probably be just fine after spending several years of their childhoods in treatment, the kids where you basically knew from diagnosis that they weren’t going to survive but they and their parents would choose hope and fight for months and months, the imminently dying kids whose parents were putting them through another round and I just wanted to scream to let the child die in peace but I understood their need to never give up, the marriages frayed, the elementary school kids asking if they were gonna die, the amputations – and the hot pink wigs, the trips to Disney, the kids who loved being in the hospital cuz they could watch TV and eat junk food. And the kids like Donna whose hearts were full of love and joy every day. It all haunted me, replayed in my head all day and all night, but I forced myself not to feel. And now I’ve spent several months forcing myself not to wonder how my kids are because I’m supposed to have “boundaries.”
But I saw your blog and started reading, and finally let all the pain hit me. I’ve done 1,200 clinical hours’ and 50+ kids’ worth of weeping thanks to your willingness to share your family’s amazing story. I needed it. I needed Donna. Maybe this sounds weird, but you’ve somehow freed me. Thank you so much.
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My heart is breaking. I’ve read every day since the beginning & I cry harder every night . I think about Donna throughout my day now. Your family is so strong and Donna is, as you said, luminous! I’ve handled crappy days at work & crumby traffic with less grace, wisdom & composure! Thank you for sharing your family’s story so poignantly and articulately; it reminds me to cherish every moment with my son. Your family rocks!
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I think this entry hit me hardest of all. Seeing the photos and knowing that even as she was smiling cancer was stealing her away. I try to find the silver lining in everything, it’s always there, but honestly in Donna’s story it keeps slipping away from me. The words “it’s not fair” float often to the surface of my mind. I know I’m not alone in marvelling at your courage & grace… no question where Donna got those traits (as well as her beautiful blue eyes) from. It’s no coincidence I was sent to your blog to read Donna’s story. She’s a part of me now, now I can say, “Once there was an amazing little girl named Donna who faught the most incredible battle against cancer. In the end she wasn’t able to fight anymore, but in her short time on this Earth she brought joy & light to so many and her story will inspire everyone who hears it.” I will keep saying it again and again, thank you for sharing Donna’s story & yours. We are all better for hearing it…
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I don’t know what to say other than my heart aches for Donna and your family. Reading Donna’s story has made me a better mom, thank you for sharing it with us.
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I have been following your stories about Donna and your words really sink in the heartbreak of cancer. I tried to read it out loud to my husband but it made me cry and I couldn’t get through it. I think your incredibly brave for putting it down on paper and sharing her story and you can hear in your words how heart wrenching cancer can be.
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I love you, little Donna and I’ll never forget you. I never got to meet you, but I carry your memory in my heart. I’ll think of you when I see my nieces dance in joyful abandon, when they discover another amazing fact about the world, when they bask in the sunshine at their favorite park.
Mary Tyler Mom, Dad and Son, you have a beautiful family and I’m grateful that you’ve shared your story with us. Cancer is a ravenous beast and hopefully one day it can be slain. I lost my father to Pancreatic Cancer in 2008. It was just a matter of months from diagnosis to hospice to the end of the battle. Your family is in my thoughts and prayers and just know that Donna will not be forgotten. I am so sorry for your loss.
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Damn, this just gets harder and harder to read. I’ve reposted your story several times on my facebook page, not because I “think I should” but because it’s a swift kick in the ass reminder that we only have so many tomorrows. Donna’s tomorrows should still be coming. It’s not fair and it makes me angry. I’m almost more angry than I am sad at this point because of the unfairness of it all. Babies don’t die. Babies don’t get cancer and die. At least, they shouldn’t……
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Oh MTM, thank you for sharing your story. If I was in the Chicago area, I would find you and ask for a hug.
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My husband says to stop reading because it makes me upset. Well, MTM and family didn’t get that choice. I won’t make it my choice. Donna has taught me to be a better momma. A better person. Thank you for sharing your story!
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I’ve been reading since the beginning. I look at the life in Donna’s eyes in the pictures that you’ve shared with us, and my heart just breaks for you and your family. I already know how this is going to end, I just wish I was reading a “choose your own adventure” book so that I could make it a happier ending. ❤ Bless you, MTM, MTD, MTS, and of course Angel Donna!
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MTM, Donna’s story is so inspirational and you are such a strong lady. Instead of wallowing in the why’s and whatfor’s of cancer and how this bastard of a disease took such a lovely little girl, you are facing it head-on, long after the storm, and I truly admire you for it. You could have sank back and wallowed in self-pity over the short time you had with this precious baby but instead you have decided to not let cancer defeat you or Donna. You, in effect, have not let it “take” Donna from you. By sharing her story, raising awareness, and doing all that you are, she is very much alive today. In the hearts of everyone who has read her story, and most importantly yours and your family’s. From the bottom of my heart, Thank you for sharing Donna with us.
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Thank you again for the motivation to cherish my son more every day, to welcome the craziness of the 3-year old mind and know what a gift it is that I get to look forward to the 4-year old mind, and 5, and 6….
Please tell me that you are considering publishing this as a book. Yes?
Sue
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Just read on facebook that you’re working on today’s installment right now, as I type. I’m kind of hoping you get distracted, and aren’t able to finish. Because, if you can’t finish, the story doesn’t end. And, if the story doesn’t end, Donna doesn’t end. Right? Ugh. This just sucks, sucks, sucks. “Right now” Donna is so beautiful, still so full of life. How can this be real? I hate this. I hate that I keep hoping for a miracle ending to a story that already ended. Why can’t I wrap my feeble human brain around that??? I hate that I’m a highly educated, almost 40 y/o mother of five… and the best I can come up with to lament the death of a vibrant little girl is “this sucks.”. That *really* sucks. Sigh. Sigh, suck, sigh. Suck, suck, suck.
Okay, I’m done venting. I’m so sorry about that. What I meant to say is, you’ve started something here. Donna started something. She is guiding you to guide us. We’re here. I’m here. And we… I… will be, for a long, long, looong time. You’re stuck with us now. 😉
Beautiful, beautiful Donna. We love you. We miss you. Thank you. Hugs and kisses, sweet sweet girl.
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