Donna's Cancer Story: The Bubble

This is the twenty-eighth 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 cancer treatment. 

Swinging together 

During this period, Mary Tyler Dad and I opted to step inside what we called The Bubble.  The Bubble was a happy place.  Donna was with us there, so was Mary Tyler Son.  Cancer, the bastard, was not invited.  Yes, The Bubble was invitation only and it was an exclusive affair.  There was only room for four, so even close friends and family had to watch us from outside.  In The Bubble, it was always a perfect 75 degrees and sunny -- kind of like San Diego. 

To be with Donna could be heartbreaking, and sometimes impossible, if we allowed ourselves to think about her death.  We learned to detach from the reality of her dying in her presence.  I think, if we were different parents, it could have easily gone the other way -- detaching from Donna.  That was unacceptable.  She was like a joy magnet.  She kept us grounded.  She made everything bearable.  Mary Tyler Dad explains how The Bubble worked:

"You know, I'm able to forget how the situation is . . . that we're teetering on the brink, with no way back when we fall.  It's terrifying, of course, but it also reminds me to take as much delight as I can.  I love talking to Donna.  It breaks my heart that I can't remember every single conversation we have, word for word, because they bring me such pleasure.  It's easy to be exhausted, but it's also easy to be delighted, and it's vital to keep my head straight to let myself feel that delight." 

The Bubble also had nothing to do with denial.  Mary Tyler Dad and I knew exactly what was happening.  We talked about it and sometimes allowed ourselves to imagine it together.  One day he recounted how he felt after taking six month old Mary Tyler Son for a walk to the park during Donna's nap, "This is how it will be.  This is what life will be like without Donna."  We both flirted with those thoughts.  Full disclosure, I had flirted with those thoughts since March 23, 2007.  Part of how I cope with hard things is to imagine them, try to feel and anticipate them, get comfortable with them. 

Rainbow Brite 

(Note to Cancer Parents:  baby legwarmers are fantastic picc line covers; Donna had a whole wardrobe of them that made her happy.)

So, yes, denial was not in play, but our defenses were alive and healthy.  The Bubble, because it was our defense worked beautifully.  I have some painful memories of not being very good at communicating with my closest friends or Donna's other family during this period.  In their voices or their eyes I could see their profound sadness and loss.  I am ashamed of this, now, but shut myself down from that.  It was protective.  And, crazily, I felt responsible for their sadness.  I chose The Bubble because it was better.  Simple as that.  Donna's sadnesses were related to silly things like having to get out of the tub too soon or Mary Tyler Son gumming up one of her books with his teething.  Those sadnesses I could handle.  We worked to maintain a schedule during these weeks, to create structure and normalcy for Donna.  The medication schedule called the shots, but we did what we could to work around them.  Normalcy and a schedule meant Mary Tyler Dad left for work in the mornings, me and the kids ran errands.  That helped preserve The Bubble, too. 

Sometimes, in the midst of the most mundane tasks, The Bubble was at risk by my wish to inform the folks we came in contact with with just what was happening.  Our dry cleaner or the nice lady at the McDonald's drive through window or the cashier at the grocery story.  I fantasized completing our brief interactions with something like, "Hey, you know my daughter has cancer.  Yeah, and she is dying.  Right now her cancer cells are duplicating at an alarming rate and it will kill her.  Soon.  Isn't that messed up?  I know, she looks perfectly fine!  Okay, thanks, and have a nice day!"   Sigh. 

During this month, Donna was the first child from Children's Memorial approved for a new respiratory therapy meant to influence her immune system to fight the cancer cells specific to her lungs.  MD Anderson in Texas was calling the shots, e.g., running the study, and allowed Donna to use it under compassionate care standards, or off-study.  We were told she was the youngest child to receive it.  It is twisted when you hear that and feel a sense of pride.  The drug was leukine sargramostim and it was delivered via nebulizer.  Because it was so toxic, and I was nursing an infant, the treatments were given outside on our deck in the open air.  Mary Tyler Son and I could only watch from behind glass.  Donna would sit on her Daddy's nap, studiously watch Dr. Seuss's The Grinch Who Stole Christmas and Horton Hears a Who, and hold a purple dragon mask over her face while steam, the toxic treatment, escaped out the dragon's nostrils.  This was a learned skill for Donna who historically hated masks.  She did what she needed to do.  As we learned from one of her favorite books at the time, this made her brave.  Yes, my girl was heartbreakingly brave, each and every time it was asked of her. 

Our days became a bit of a maze working around medications, but still, Donna's quality of life was excellent.  She was sunny, funny, clever, bright, feeling well.  She loved her brother and liked nothing more than to stand over him and make him laugh with her protracted spelling of his name.  It never failed.  She would shout his name, then proceed to spell it, with squeals of delight pouring out of her baby brother.  The more he squealed, the more Donna rolled her letters.  That six month baby boy loved his sister so.  His eyes would naturally gravitate to her whenever they were in the same room.  They loved one another.

Brother and Sister

Often during these weeks, I would have to cancel or postpose hospice visits.  Technically, they were palliative visits, as Donna remained on treatment.  The fact that it was understood the treatment would not result in cure was immaterial.  The nurse or social worker would call and ask to come by.  "I'm sorry," I would say, "We're off to the acquarium, zoo, dinosaur bone museum, insert attraction of your choice here."  They were imminently patient with us and I was grateful for that.  God bless home nurses and the work they do, but that job is just inherently difficult to schedule.  We knew from years of experience that if you schedule a home visit, you will wait.  Donna was too busy to wait.  She did not have time to wait. 

Donna's fourth birthday was this month, too.  As lovely as The Bubble was, this birthday, her last, almost broke me.  I knew there was a lesson to be learned in having a terminally ill daughter who did not feel sick, but trying to learn that lesson with the artifice of "HAPPY BIRTHDAY!" was so very hard.  It felt cruel.  Donna's birthdays had never been easy.  On her first, I was downed with a migrane.  On her second birthday, the idea of a third was questionable.  On her third birthday, we were planning a surgery just days later, thinking a fourth was unlikely.  On her fourth, we knew she would not see a fifth.  During these days, Donna started using the phrase, "When I'm 8, I will do this," or "When I'm 10, I can do that."  A piece of me died each time she said it. 

Four at Candlelite

But Donna did not know her fate.  She was a child proud to be growing up.  She was four!  She deserved a party.  She wore a hat.  We had some playmates over to build pizzas.  We smiled and ate cake and celebrated.  We went to the joy with Donna, clutching The Bubble the whole way. 

Tomorrow:  Whiplash


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  • I have read this blog everyday. Each day, I tear up a little more. I have an 18 month old son and after reading this, I can't wait to just get home and hug him. I feel horrible for what your family had to go through. I don't know what it is like and pray to god that I will never have to experience it. I do want you to know that your blog has brought awareness to me regarding child cancer. It has also taught me to treasure every moment, every hug, every kiss. It is so easy to get caught up in the day, errands, work, bills, etc that we don't pay much attention to the small things. Since reading this, I have slowed down and really began to treasure the moments that I send with my son. I am no longer too busy making dinner to go look at something with him. You have taught me that we don't know what tomorrow brings. Your family is so strong and I only wish happiness for each of you in the many years to come.

  • Dear MTM,

    Please do not feel ashamed that you were not able to reach out and communicate with your close friends and family as you focused on reveling with Donna and her immediate nucleus in "The Bubble." I know my own loss of a child we were going to adopt after 13 months of raising her doesn't come close to the intensity of your journey. Nonetheless, when little Nina was reunified with her birth mother, the only way I could deal with my grief was to shut off all family besides my husband - completely stopped talking to everyone close to me for several months and just let myself "be." I gave myself permission to do that, even though so many family members later told me how left out they felt ("You know, Nina was our family too - we wanted to grieve with you").

    You have been so kind and considerate to one and all during this journey (Donna was a great teacher but you are clearly an excellent student!). And you are continuing to inspire everyone, near and far, to live like Donna and her family. Trust me, "shameful" or "inconsiderate" are the last things that come to mind as we travel your journey with you.

    Much love from this family in San Diego

  • What did you tell Donna about her condition? (And thank you for all that you have shared already.)

  • In reply to WestLooper:

    Great question. Throughout her cancer, we never used that word. At 20 months on, we told her she had an "ouchie" in her head and needed medicine to stay healthy. We worked hard to not treat her as a sick child. Her treatments were to keep her healthy. When she had a relapse, we told her the "ouchie" was back and needed different medicine. The scans were "pictures inside her body." We focused on small picture rather than big. She had no context, so her fears were small picture fears. In the remaining entries to the series, I will write more about how Donna's awareness grew and how that was handled. Thank you for such a great question, and more importantly, thank you for reading and keeping me company this month.

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    It's a damn shame that this little girl didn't get to grow up. She sounds awesome.

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    I came across a link to Donna's story yesterday, and read it from the beginning -- I'm so sorry for your family and your loss, and thank you for sharing your story and your daughter with us in this way. She really was a beautiful girl, and reading her story is both amazing and heartbreaking.

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    I can only read this story a few bits at a time or I'll start crying. But thank you for sharing her amazing story with the world. She was an incredible child.

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    Dear MTM,

    First, I hope this comes out making sense...because I have SO many thoughts racing through my head and feelings running deep that I'm certain I cannot express them all coherently. I didn't begin reading Donna's story until a few days ago, so I have had both the honor and sadness of having even more of a "crash course" on her life - rather than having spent the entire month with you. The night I began reading, I had to force myself to stop after reading about 10 entries, simply because of the intensity. (And as a social worker myself, I too understand vicarious traumatization, and I admit that if Donna wasn't so amazing, and if I hadn't fallen in love with her in the first few posts, I may have quit reading for my own protection...both b/c of my own past pain from a pregnancy loss and b/c of impending loss of a sweet baby boy who will likely be returning to his birth mother in a matter of weeks, after spending his first year with us...neither of which I would dare compare to your pain, and yet both of which have caused me and will cause our family much grieving.) However, you write with such power, and Donna lived with such is overwhelmingly a privilege even to have this small, compacted glimpse into your lives. I am all caught up now, as we head into these final days, and yes, like so many others, I feel grief for you and your family - and incredible admiration for the truly amazing child Donna was and is. What an incredible spirit and mind she had - and how I admire you and MTD for being willing to let her lead you, to let her be your guide through this horrific thing called cancer. I have read other stories of children with cancer, but not until now have I truly felt like I have even come close to "getting" the true hell that the daily grind is for the Cancer Parents. I've even worked as a hospice social worker; and I have to tell you that a.) I am forever grateful I never had a child on my caseload, and b.) most adults - both the living and the dying - do not live with the kind of grace and spirit that your Donna did in the face of so much pain. I love you for being so giving as to share Donna with us, and for your own compassionate concern for the grief of your readers - even as you continue to live in the midst of your own gaping wound. I don't know your spiritual beliefs, but I do so hope that my own unborn child, who I believe is in heaven, is running and playing with your Donna - because what a beautiful thing that would be.

    Thank you, from the depths of my soul, for sharing Donna with us, and I do hope that you will be able to have some sense of the great impact her life and story has had on SO many people who never had the chance to know her before now. I know I will be forever changed from reading her story.

    Much love,

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    I woke up thinking of Donna this morning. I woke up next to my own 4 year old ball of sunshine and hugged her while she still slept and thought of Donna and you and your family. And I thought how amazing 4-year-olds are and how funny and warm and silly and perfect they are. This seems especially true of Donna. She seemed to show so much grace and joy and bravery in her too short life. Thank you for opening our eyes and hearts to her and for sharing her with us.

  • Oh Mary Tyler Mom, this is my second round of reading your story. This second time reading is just as hard as the first. The tears come just as hard and just as fast and all I can think is.....God Bless you and your Blessed Family. Now I look at the pictures of Donna with pure love and I feel her pain and your pain more than I did the first time. My mother lost my brother when he was 19 and it nearly killed her (accidental drowning in Lake Michigan), but to endure and continue after all that you've lived through, you truly are my hero. I know you don't like hearing these words, as I've said them to you before. But, you TRULY ARE MY HERO. I follow in all of your quests, as we've grown up in the same neighborhood (I've "spoken" with two of your sisters on Facebook - we are Friends), but I have such admiration for you. You have such SPUNK, GUSTO, TAKE NO PRISONERS, GUMPTION, DON'T PUSH IT BROTHER/SISTER!!!!! I so love that about you. I wish I had 1/8 of your strength. Yes, you ARE MY hero!!!

  • I too woke up thinking of Donna and of your family this morning. A part of my heart just broke as I just read Terminal and, as I have been everyday, tears are freely flowing down my cheeks. I have had two families I am close to lose children to "the beast" over the last four years, and one defeat it. I've been struggling with the grief and saddness I still have over the two boys deaths and often wonder why it affects me so much. I cope with it by volunteering to help raise money for their fundraising events or foundations, but the wounds are still there. I often feel foolish for these feelings, not being the parent or even family, and it has been gnawing at me trying to figure it out. I am honored to have kept you company this month as you so beautifully tell such a sad story of pain and grief, yet the beauty that is Donna so radiently comes through. It is obvious that she is truely a very, very special little lady. I thank you for sharing this very personal story with all of us and it has helped me understand my own experiences a little more.

  • MTM, You remain my hero. Your honesty and MTDad's honesty and articulateness (I think I made up that word) are awe inspiring. I learn so much from you. Every day.
    xoxo from MA

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    I've your blog every day of this month. I read it while my infant son sleeps, and think of your son who was an infant during the story you tell, your amazing daughter and of my own lost daughter (birth accident). I check it every chance I get during the day until it's posted, looking forward to knowing more about Donna. Every day I read it, I am amazed by her and her life, yet knowing every day is closer to "saying good-bye" brings tears. One of the very few comforts to me since losing my daughter is times I know she is remembered. In case you feel the same- I'll remember Donna. I don't know if anyone can "hear" her story like this and not.

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    I wanted to let you know what an impact your family's story has made on me. I have read every entry and have so much admiration and amazement at the strength of you and your family. Thank you for sharing this with all the readers, it truly is an amazing, if not heart breaking story.

  • I've read daily, thanks to another avid reader letting me know of this. I've done well with the emotions. Until today, I'll provide my own back story. I work at UI Children's Hospital; albeit that I am a Purchasing Clerk and buy everything need from office supplies, pumps, needles, medical equipment, to the new ambulance. I also provide support for my direct boss, who is serving as Interim Director of UI Children’s Hospital. It’s been fun as we are in the process of building a new hospital!
    I see these kids in just for labs or in for the long haul and I don’t want to say I’ve grown “used” to it and my emotions have “hardened” because I go home and find myself wondering why I haven’t seen kiddo x or little man y lately and then heart in your throat you wonder. Then I think back did I order any flowers for that funeral. No.
    I know that when I walk through the hallways, those kiddos know that I am Jess who comes by with a cart full of toys, games, books, fun things that will stock pile the fun rooms that the Child Life Staff will help them to use at activities. I’ll get high fives from them. THEY make my day. They are the ones who make ME want to keep doing my job.
    In reading about your little Donna. I can just tell through your writing that she too would be the one who I would find doing these same sorts of things.
    I’m glad you’ve shared this. I would love to give you a hug.
    Thank you, it takes a brave woman, a brave family.

  • I just want to say thank you. I feel privileged to get to know Donna in your writing. I can't write like you can so I hope my feeling come out in this post. I think of my child all day while I'm at work and now when I think of him I can't help but think of Donna. She definitely lives on. I feel her when I read your posts and when I think of my child. She lives on in your writing and in the hearts of everyone you have touched with her story. I'm running a marathon in March for the American Cancer Society and would be honored if you would allow me to have Donna's name on my race day shirt along with everyone who has touched my heart that has had to fight cancer. God bless you and your family.


  • Thank you for sharing Donna's story - what an amazing spirit, what a. remarkably special little girl. Since I first started to read Donna's story she has been on my mind very often - what a beautiful spirit, what a bright light and what an amazing mama and papa. You are all in my thoughts.

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    Thank you so much for sharing your story!. Thank you, thank you. I just devoured it all in an hour. First, hugs to you, because your mother died of brain cancer, as mine did too. Hard enough, and barely discussed in the story...and yet that was a whole separate journey you experienced before your daughter Donna was even born. And then your precious daughter, such a wonderful girl. More hugs. I have a 4 year old daughter, 2 year old son, and I work with children with genetic disorders at a Children's Hospital in WI. So, I've been through parents with cancer, children with genetic conditions, many severe or life-threatening, and yet, still haven't experienced a parent who has experienced what you have, and sharing it so beautifully, with your true raw emotion. Thanks again. More, more hugs.

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    I started reading your blog about a week ago . My husband came home and I just gotten home from work and I was sitting at the omputer crying. He was like whats wrong through my tears I said you must read these blog pages about Donna. He sat down and started reading and I kept checking on him , I'd say you ok? As tears were rolling down his face he said yeah im ok . I am so not looking forward to the end of this blog entry from you and MTD. You have inspired me to move through and smile at the hard times.That day I told my husband that no matter what kind of issues we have had i.e; money, work, normal life issues , we have made it through life without our children having cancer. In my life I have gone through hard times and wondered to myself after the fact how in the world did I handle that.Strength is giving in all kind of ways in our mind. I believe that Donna gave you and MTD strength to get through this.Thank you for sharing your story with the world and especially for sharing with me.You have inspired me and my husband. I wish you and your family all the happiness, health and peace in the world! All my love Christy
    (stupid bastard cancer)

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    I've been following your blog since the very beginning, when Carrie first posted about it on her blog. And every week, it gets harder and harder. After every post I think "It's not true. This happy little girl will get better, she has to." and it breaks my heart to know she didn't. My poor roommate is stuck listening to me cry and now she knows when I'm crying over here in my little corner of our dorm, I'm reading and getting to know the sweetest, bravest, most charming little girl I could ever imagine. Thank you for sharing this, hard as it may be. Because of this, all of us readers have a new hero. A sweet little girl and her strong, loving parents. Never fear, because Donna will never be forgotten. Not by any of us.
    My heart goes out to your family.

  • P.S. Your Family Portrait blog has inspired me to take our very first family portrait. We too have always thought of portraits as corny and also (secretly) wanted to wait until we "looked better"... you so eloquently expressed why capturing a moment in time is more important than vanity. Thank you again.

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    Mary Tyler Mom....I think about young people just starting their lives. They have hopes, ambitions and dreams. Some dream that they can make a difference in the world. Then they get in the real world and life begins and that "make a difference" spirit gets push behind all the "have to do" things....You my sweet beautiful lady have made a difference in the world. Although not in a way that you wanted to, you have awaken so many people by letting us see a glimmer of what a child, parent and family go through when a childhood cancer invades their life.
    I, like many others wait for a new post each day. Now I don't want to see another post. I want to stop this story, rewind and rewrite. I don't want to wake up Oct. 1st and not have a Donna story. You have honored your precious daughter's life. God definitely knew what he was doing when he chose you and MTD to watch over Donna. He could not have picked a better set of parents. I am so sorry for your loss. You have made Donna a part of so many peoples life....she does live in our hearts. Bless you for sharing her life, your life, your families life with us. You have truly made a difference in so many lives. Bless you and your family.

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    Once again you have left me flabbergasted with your strength. I hurt so much. Donna has become my fourth child and I, honestly, don't know how you had the courage to endure this. I don't know that I would have it in me to do what you accomplished. My heart goes out to you. Donna is a miracle... regardless of the outcome. And, once again, thank you for sharing this and helping me cherish every single moment, positive or negative, enjoy the little things and never stop wondering and dreaming. Thank you, from the bottom of my heart!

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    Thank You for allowing us a window in to your & especially Donna's life.
    Since I started reading Donna's story, being a sleep deprived zombie is acceptable. Every night my 14 month old daughter wakes(several times nightly) , I remind myself of how precious her life is, and I've actually started to enjoy having her sleeping in my bed. And when I want to throttle my 10 & 7 y/o boys, I TRY to imagine what life would be like if they were taken from me.
    I'm still a foul mouthed MWDAS, but I'm certainly trying harder to keep perspective on this life! Much love to you and your family from Boston(even if their hospital can 'suck it' :) )

  • Thank you so much for sharing Donna's story. I started reading because of a friend who now leads an advocacy organization for children with cancer, and for her son, who survived cancer at age 4. I kept reading because of Donna, and the amazing story you have written about her. So much of it resonates -- even though what we are dealing with every day is autism, rather than cancer. Your story has encouraged me to struggle for my boy. Thank you.

  • Her pictures are all so darling. I love the one of her and her brother, her little hand on his head, her love for him so apparent in her eyes. She was a bit of an old soul it would seem.... As awful as this all is and was and will be for the rest of your lives, you were so lucky to hav e her, to know her..... And I know you know that :) I just had to say it "out loud".

    Love to you all as we reach the conclusion of this story....know we are all thankful that you are sharing your sweet child with us.

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    " Donna started using the phrase, "When I'm 8, I will do this," or "When I'm 10, I can do that." A piece of me died each time she said it. " I read this sentence and my heart broke for you both.

  • "Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree." (Martin Luther) - Thank you so much for using this quote, it really captures how I want to live my life. You have enriched so many lives by sharing your story. Thank you!

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