Donna's Cancer Story: Infection

This is the twenty-sixth 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. 

Pensive Donna 

(All photos courtesy of Anne L. Geissinger, Pixeldust & More)

Ten days of this month were spent in a children's hospital in Indianapolis with a double port infection.  During those ten days I must have thanked my lucky stars approximately 673 times that we lived in Chicago and were treated at Children's Memorial.  Donna's beloved tubey had to come out, requiring the insertion of a picc line in her left arm.  These were scary, awful days.  Some of the worst since 2007's stem cell transplant, and that's really saying something. 

The origins of the infections were unknown and while many children with cancer experience numerous infections, the only infection Donna ever had was during her stem cell transplant.  The worst thing a Cancer Parent can hear in the midst of treatment is 'infection.'  Scratch that.  'Relapse' is the worst word, though infection is a damn close second.  Wait, you can add 'terminal' and 'hospice' to that list, too.

The ten days felt more like ten years and included being transported to Indy from Bloomington via ambulance due to Donna's raging fever that came out of nowhere and sent her into a shaking bundle of discomfort.  Terrible ER care.  Misdiagnosis.  Hearing from our team in Chicago that Donna had an infection before the Indy team even knew.  How that is even possible is still beyond me.  Alarmist rhetoric from an unfamiliar oncology team that clearly were annoyed by my advocacy skills.  Perhaps because they were on the receiving end of them?  I was told by the head of pediatric oncology that Donna was receiving 'adequate' care.  "Adequate care," I told him, "is not good enough for Donna, or any child in your care." 

Blue Eye

This is a bit stream of consciousness, so bear with me:

Staying in a hospital room with two children, one of whom wanted OUT (Donna) and the other of whom (Mary Tyler Son) was not allowed out of the room because as an infant he was not yet fully immunized.  This was at the start of the swine flu epidemic, for added drama and paranoia.  A port removal surgery scheduled at 9:30 p.m.  I remember being with Donna in surgery, and Mary Tyler Dad being in Chicago, but have no memory of where Mary Tyler Son was or who was with him during those hours.  My Dad?  You?  

Placement of two IVs in Donna's hands, rendering her unable to use them at all; we called them her "claws."  A picc line insertion done without any sedation, Donna screaming to the surgeon, "NO MORE LIDACAINE!"  A surgery without sedation is incomprehensible.  Going back and forth daily to the proton center via a 70 minute ambulance ride so we wouldn't fall behind in treatment.  The RN that had to accompany us talking on her cell phone the whole ride.  Some EMTs offering Donna donuts on the ride home and others refusing to allow her to eat because of liability reasons.  Donna losing her will. 

That was scariest of all.  When the IVs were inserted in her hands, without any discussion with me about placement, they left Donna unable to feed herself, move herself in bed, or play easily.  She simply started to fade.  It was sad and scary and painful - - no doubt duplicating how Donna was feeling herself.  We got through it, and returned to Jill's House in Bloomington to resume treatment, but those ten days were scarring in so many ways. 

Donna on her bike 

Remembering these days now, I still feel so impotent to stop what was happening.  I am certain that the care at that Indy hospital must be better than what we experienced, but it feels like Donna's care was doomed from the moment she was wheeled into the ER.  Having worked in health care for so long, I know that sometimes that is precisely what happens.  Mistake after mistake, arrogant doctors who cover other's mistakes with defensiveness, unfamiliar staff who saw us as a short time problem to endure.  And Donna caught in the crossfire.   

Later in the month, on another trip home to Chicago for scans, we got the best news possible, that the small lesion in Donna's neck was shrinking.  The proton beams were working.  Donna was recovering from the infection setback/trauma as were Mary Tyler Dad and I.  We saw the lights at the end of the proverbial tunnel, but I lost some of my fight this month. 

In working to advocate for Donna, in trying to discuss all of the mistakes and mishaps made by hospital staff that harmed our girl, I was defeated.  Even the most basic of things.  I could not take Mary Tyler Son in the halls, which meant I could not leave to get food for myself.  I was not allowed to order food through the hospital.  I was not eating.  A nursing mother not eating and no one seemed to care. 

Family in Bloomington 

When I asked to speak to a patient advocate, the gal I was referred to listened politely, but only wanted to know if I planned on hiring legal representation.  I stepped back.  Donna and Mary Tyler Son needed me more than I needed to grind my axes and rail at the injustices of alarmingly poor pediatric care.  We just wanted to get the hell out of Dodge. 

It was suggested during this period that I might want to start Mary Tyler Son on formula - - that the stress of nursing was too much in the midst of this cancer chaos.  I strongly declined.  Some days the only time I held him was when he was suckling.  I wish I remembered more about his infancy.  Those lost memories are another casualty of cancer.

All of the photos you see today were taken by my friend, a photographer, who visited with her youngest daughter for a week to tend to us and shoot Donna.  More than any others, these photos cut to my core.  They capture Donna in all her splendor, remind me of her wisdom, her wonder, her tenacity, her strangely knowing eyes.  The deepest blue eyes I have ever seen.  My memories of Donna are shaped by Anne's photos of her.  That is a gift I can never repay.  Taken just a couple weeks after the infection ordeal that was already becoming a memory.   

Wonder

You see, the wind blew with Donna's health.  When she was well, we were well.  When she struggled, we struggled.  She had no inclination to wallow in or pity her situation.  She wanted to live.  She knew, intuitively, that life was a privilege and she did not waste a moment of hers. 

Tomorrow:  Terminal

Comments

Leave a comment
  • For some reason your stories about the kindnesses of others- friends and strangers alike- has almost as powerful of an impact on me as the stories about Donna. The pictures are beautiful.

  • In reply to annekip63:

    Thank you. The unending kindnesses of strangers have sustained us for years now. Not to mention the kindness of our family who cared for us completely so we could care for Donna. Thank you for reading.

  • I am amazed at Donna's story and how you are able to tell it. I cry every day that I read a new installment. Donna is, and always will be, a beautiful soul. Thank you for letting us get to know her and see the light in her. I continue to feel hopeful, despite knowing the path to where this is leading. Your journey makes me think about how many Donnas there are out there, and how many parents are trying to advocate better care for their child. Donna was blessed to have such a strong Mom.

  • In reply to AmyH:

    Thank you, Amy. So often my thoughts are drawn to the parents I see at Children's Memorial when I visit for events. And to how often the beds are filled to capacity. There are so many people affected by pediatric cancer and it is a hard road to walk.

  • fb_avatar

    Turns out terminal is not a word to take during your lunch break. I love you guys. And I am with you this week, as the posts get more difficult, and the joy is found in unexpected places. Hugs, ever hugs.

  • In reply to Shawn Lent:

    You're always with us, Shawn, and it helps to have your company. Thank you!

  • fb_avatar

    I have been hesitant to leave a comment prior to this, feeling as though I will probably use the wrong words somewhere along the way and I, in no way, shape or form, want you to think that anything I say is offensive. You share your story so beautifully. I thank God each and every day (since the day my children were conceived) for their health, beauty and wisdom. In today's story, all I want to do is apologize to you for the care that you and Donna received at the Indy hospital during this infection. I am an Indy resident, but other then being a patient, have no connection to the health care providers/industry. Just in my heart - I think it is awful that health care workers can come across as uncaring/unkind to any patient, but most of all a child. Thank you for sharing your story and if for nothing else, please know how much you are touching our hearts by sharing Donna with us - it is truly a blessing.

  • In reply to Anne Shea:

    Oh, Anne, no need for you to apologize on behalf of Indy! Thank you for reading and for commenting. You do not offend or use the wrong words. I am so grateful that people are reading and learning. I so appreciate your words.

  • AmyH above said exactly what I am feeling. Thank you for sharing Donna's story. The pictures and your words truly show us what a beautiful blessing Donna was.

  • fb_avatar

    Please continue to write beyond this story. You put your life experiences into writing so beautifully.....despite the unfortunate content. I am amazed by your daughter every time I read your posts. I have lost a few friends to cancer, some of them very young, and I truly hope they are all together watching over us. God bless you, your Donna & your family.

  • In reply to Alicia Watson:

    I will, Alicia. I started writing when Donna was diagnosed and found that I couldn't stop even after she died. It is too helpful for me to not write. I will continue to write, just as I have. When I write about things other than cancer, I can be snarky, witty, earnest, observational. I hope you keep reading, even after Donna's Cancer Story ends. Please follow me on Facebook or subscribe to my blog to keep receiving new posts. Thank you!

  • I have been reading - and occasionally weeping - from the first day you started writing Donna's story and it has touched my heart to the quick. You are right - adequate is not good enough care for a child, not even as a lowgrade benchmark. EVERY patient deserves superlative care. Have you thought about writing a book about Donna?

  • In reply to catmcroy:

    Thank you, Cat. Yes, average is NOT good enough. The doc looked stunned that I would say that to him. We definitively got off on the wrong foot, he and I, and never recovered. Keep reading!

  • Over the past month, I have found myself waking up thinking about Donna, going to sleep thinking about Donna, and turning your words - and hers - over in my mind throughout the day. I just read through the companion blog post that you linked to and want to say that although the postings from your readers about Donna and this series will likely trickle off, I am quite sure that thoughts about her, your family, and this story will go on longer than you know.

    The title for tomorrow's entry nearly brought me to my knees.

  • fb_avatar

    Thanks for sharing your Donna with us all. What an incredible,brave, strong, beautiful child. I am looking to tomorrow's entry with dread but I know it is nothing to what you and Mary Tyler Dad and Donna have endured. Sending you hugs and peace.

  • I read through all 26 days (months) today, in between caring for my 17-month-old son. He's just a bit younger than Donna was when she was diagnosed. Of course this meant that I alternated between laughter and tears today. When I got to the end of today's post and read, "Tomorrow: Terminal," I felt my heart sink, even though I know how this story ends.

    My thoughts are with you - thank you for sharing Donna with us. I, for one, will not forget her.

  • I was defeated. Even the most basic of things. I could not take Mary Tyler Son in the halls, which meant I could not leave to get food for myself. I was not allowed to order food through the hospital. I was not eating. A nursing mother not eating and no one seemed to care. It was suggested during this period that I might want to start Mary Tyler Son on formula - - that the stress of nursing was too much in the midst of this cancer chaos. I strongly declined

    __

    (1) could not take …. Son in the halls as he was not allowed out of the room because as an infant he was not yet fully immunized

    Hint: A hospital with infections is NOT the place for a healthy infant. The appropriate option was to send him home with relatives.

    (2) which meant I could not leave to get food for myself

    See answer to #1

    (3) I was not allowed to order food through the hospital.

    No – a hospital is NOT a restaurant which can present you a bill for your meal. And the hospital does not feed all those who tag along with a patient.

    (4) A nursing mother not eating and no one seemed to care

    A nursing mother CHOOSING not to eat. A woman who put herself and her infant child in a position where she could not go out and eat and get meals. Send the infant home – and yes that means formula or stored milk – or do without food for yourself. Your choice.

    SO yes, no one is going to care if you are throwing a fit of self-involvement and entitlement because things are not the want you want them to be and the world won’t cater to you to allow you to have what you want. Your choice – your tantrum. No reason anyone should care when you throw hissy fits and refuse to do the sensible thing.

  • In reply to anns:

    anns - I found your comment to be ridiculous. You have no right to judge someone without having any idea of what they were going through. Having your newborn with you and nursing is a very important bonding experience. You act like it's so easy to simply send an infant to live with relatives for months at a time. MTM has made it clear that their family and friends supported them big time during Donna's illness, but people do have to work and may not be able to care for an infant. Even MTD had to remain at home to work. I know that if I was in this same situation, I wouldn't have relatives or friends to send my son home to.

    You accuse MTM of throwing a tantrum or having a hissy fit, but I didn't get that from what she wrote at all. This blog is meant to tell the reader what this family was going through more than 2 years ago and to bring awareness to pediatric cancer. I think you're really ignorant to post something so rude and disrespectful.

  • In reply to anns:

    Dear anns,
    You are a black hole of empathy & common sense. Stay away from other human beings. You suck!
    Regards,
    AmyH

  • fb_avatar
    In reply to anns:

    anns, what in the F*CK is wrong with you?!?!
    1) You have NO compassion
    2) You have NO heart
    3) You have NO common sense
    4) You have NO buisness posting your extremely rude & ridiculous opinion on a blog that this amazingly strong woman has had the courage to share with us all. In your stupidity all you have managed to accomplish is provide proof of the inadequate & unprofessional care from the staff at the hospital that you no doubt work at. You should be SO ashamed of yourself. It makes me sad that there are people like you out there, everyone should learn to be a better person from Donna. She and her family have touched my heart so deeply.
    Thank you Donna for making me see the beauty in things I used to take for granted, & thank you MTM & family for letting us into your lives. You truly are amazing & inspiring. You will ALWAYS be in my heart, much love to you

  • In reply to anns:

    As friends and family members gathered in my stepfather's room during his last couple of weeks before the cancer finally took him, the nursing staff brought us pots of coffee and food from the cafeteria. They warmed bottles for my sister who was toting an 8-month-old baby. They did anything and everything we asked for, and a great deal that we didn't ask for. They were angels to us.

    Anns, I suggest you go lurk on some other blog where your opinions are welcome. You have no friends here.

  • fb_avatar
    In reply to anns:

    Am I allowed to call Ann a twat??? What about a horrible, black hearted pig???

  • After anns post, I felt the need to create an account just so I could comment. Anns, you have obviously never parented a child with a life-threatening illness, nor have you parented a child with a life-threatening illness while still trying to mother your other children. Until you have done one or both of these things, there's no reason to post such inflammatory things here.

    As the parent of a new baby who was diagnosed with a potentially long-term but always fatal illness when he was just a few days old, and who will probably spend some time in the hospital while he's young, I've already spent a lot of time worrying about how I will be a good parent to the children we still want to have (he's our first) while being a good parent to my son. I think it's a struggle that everyone who has a child in the hospital (or even a seriously ill child who is home with you) with other young children goes through, and until you've done that, it's not your place to judge.

    I question even whether you're a parent at all, since you believe it would be so easy for a new mother to send her infant away from her for weeks on end. As any mother of an infant would tell you, those are the months when you bond with your child and the best thing you can do for your child is be there and love them, not send them away to relatives.

  • In reply to newmom:

    Treatment is NOT about you and your wishes. It is about what medical providers can or can not do for the patient.

    No one said your choices were what you want or would like. You did, however have a choice. If you couldn't deal with the fact that there were times you would have to choose between ebing with the ill child and being with the healthy one, then you shouldn't have had the 2nd child when the first was so ill. Grow up and face that fact.

    Medical personnel can not, and are not set up to, cater to the whims of relatives. Nor can those paying the bills (private insurers or taxpayers) incur more costs so you can have what you want.

  • fb_avatar
    In reply to anns:

    I struggle to believe that any one could demonstrate such a lack of empathy and understanding as you have. Most times things in life are just not that simple or cut and dried.

  • fb_avatar
    In reply to anns:

    Anns: don't tell me... you're one of the insensitive staff at a hospital? Making excuses for their lack of humanity. HUMANITY!! That's why doctors are as important as they are. A patient is nothing without those around them... their rock. While your comments do include facts and logic... they lack humanity! How dare you!? You have no idea what she went through yet you found it necessary to post your comments. I'm feel sorry for you, your children, your spouse... a family needs understanding and love, which you seem to reflect neither. Mary Tyler Mom... you are exceptional, amazing and incredibly strong! Thank you for sharing Donna's story. I've been reading it from the start, but had not read your blog before. I was hopeful when I started, not knowing the history and was just brought back to reality with your comment above about Donna passing. I am so sorry. While it does not even remotely compare, my grandfather died of cancer... painfully, horribly in a very long ordeal. I was in shock when he passed. I cannot, and don't want to, imagine how you got through the loss of a child. If I could, I would hug you! Again, thank you for the reality check we need sometimes.

  • In reply to Elisa Bishop:

    Elisa, I think I love you ;o) OK, well I love your comment. I found myself biting my tongue for fear of too much profanity. Anns' comment is shameful, and hurtful.
    As a mother, a mother to a child with a birth injury and a medical professional, who has a large portion of terminal patients, I am ashamed for that hospital and ashamed for Anns who should crawl back into the hole she came from.

  • In reply to anns:

    The post was about how the callous actions of these medical providers destroyed the hope and will of this child. Short term responsibility was treated as minimal responsibility; they refused to do anything more than the minimum necessary at the time without any regard for the patient's wishes, comfort, or long term health.

    IVs needed? Yes. IVs needed in hands? No. Should patient's (and parents') wishes to maintain use of hands be considered? ABSOLUTELY.

    PICC line needed? Yes. Medical reason to not sedate? No. Should patient's clear wishes ("NO MORE LIDACAINE!") for sedation be considered for a painful procedure? ABSOLUTELY. Heck, I'm in my 30s and was sedated for a picc line.

    Nurse needed in ambulance? Yes. Yaking on cell phone while on the job? No.

    Who would leave their child alone with people like this? Sensible people expect better.

  • In reply to anns:

    Anns, I'm sure you think you're being informative, but really, this is neither the time nor place to point out something that was a very small part of this family's journey. My expectations for life are that we would treat each other with dignity and respect - what's yours?

    Get a clue and go find another group to terrorize.

  • In reply to anns:

    anns,
    Jack Kevorkian provides the medical care that you deserve. Oxygen on this Earth is being wasted on you and your ignorance. There's your FACT, face it.
    Yours Truly,
    AmyH

  • Hi. Thank you for sharing your story. My friend just lost her son to Neuroblastoma, and even though he wasn't mine to loose, my heart has a gaping hole too. Maybe you've heard of the blog she keeps - www.rockstarronan.com ? If not, it's a fantastic bittersweet journey as well. Ever since I watched Ronan slowly die of this awful disease, it changed me as a person. I'm on a mission to bring awareness to Children's Cancer. It's easy to WANT to fight this war when I read your story and look at my own two babies. I'm wondering if you wouldn't mind helping me... I started a petition in the "We the People" section at The White House. My petition is for the government to fund many more dollars towards children's cancer research. I need 5000 virtural signatures by 10/26/2011 for the White House to formally review and respond to our petition. Would you help me spread the word? If so, the link is: http://wh.gov/4jY Change happens slowly I've learned. But it does happen as long as we keep going...putting one foot in front of the other. Thank you. Sincerely - Olivia Hurtado

  • RE Ann's post:

    REALLY??? Have you actually been reading this story? I think I can no longer be shocked at the callousness of other's comments. Then, I read yours. "Hissy fit?" "Tantrum?"

    You are entitled to your opinion, but I see no good or kind reason to post it here. Mary Tyler Family has been through things I would not wish on my worst enemy. They did the best they could each day - as most of us do.

    You have obviously missed the whole point of Donna's story. She found a way to find happiness among pain and make the most of what time she had. Her grace and kindness is her legacy. I am sorry you seem to have missed that.

  • fb_avatar

    As someone who knew Donna and loved her, I kindly ask that any debate be done in a different format. Apart from the pages of her story. In respect. This is about awareness, not critique. I hope you understand my request is coming from a loving heart. Miss Shawn

  • In reply to Shawn Lent:

    Miss Shawn and others,

    Please forgive me if any of my posts fueled any inappropriate debate. MTM has provided an awareness not just of pediatric cancer but also of how parents must advocate for their child, including how some hospitals and providers facilitate this while others hinder it.

    As a health care administrator, I felt it was important to correct the misconception that patients should not and must not expect more than "adequate" care. Compassionate caring with informed consent is an entitlement of all patients. Nothing less should be accepted.

  • I am in no way playing devil's advocate, but anns is right about medical providers not being there to cater to families of patients. The patient is the one getting treatment and is the only one that the hospital and faculty are required to take care of.

    BUT...that being said, a good medical facility and staff will do everything they can to make the family of a patient feel comfortable and will help them as much as possible.

    The hospital didn't show any concern for the parent or sibling of their pediatric cancer patient. THAT is unacceptable.
    Even I have been in sub-par facilities, and they took care to make sure my family was at the very least, comfortable and didn't need any help with anything.

    MTM should NOT have been unable to eat because she was alone there with her infant. The nursing staff, at the very least, should have offered to sit with the baby for a few minutes while she left to find food.

    I cannot believe the complete lack of tact and compassion of anns' comments.
    Your heartless comments are not welcome here, anns. Please go away. This blog is no place for judgement or anger.
    Having those elements here do no justice to Donna's memory. Please, just stop reading and leave.

    MTM- I am so sorry that there are people in the world who can manage to post negatively and pass judgement, no matter what the topic or intent. I believe you will see past them, because you are strong. *hugs*
    Namaste.

  • Well said, Shawn Lent, and I think we can all agree that Donna's story must be treated with respect and reverence. Having said that, I think we can also agree that there are persons out there who are speaking from a warped and unfortunate perspective. They are of little consequence. Donna, and her family, show us the best that life can offer any of us--even while struggling with a terrible and anguishing illness. Donna has shown us all a beacon of pure love and caring and strength. A rare, a very rare and unique person--that this much love, this much life, this much character could come from such a young child! I stand in awe of this beautiful, tiny girl who lived her life better than most of us can ever hope to. Mary Tyler Mom, please do not stop writing, please do not stop sharing your wonderful daughter with us. She has changed so many lives, and we are all the richer for having known her. We're with you--and so is Donna. Don't give up.

  • fb_avatar

    This is Childhood Cancer Awareness month. I'm embarrassed to admit, if it weren't for Karen Weinberg and her sharing your story on Facebook daily, I wouldn't have known that! And because of your powerful story and of course knowing the Weinberg family, Childhood Cancer is now part of my daily prayers. Thank you for sharing your beautiful, courageous and inspirational daughter with us this way! Your are true heros and may God bless every Cancer Family with the patience and strength you have shown through your words and actions.

  • As Shawn suggests - focusing on Donna. Yesterday I tried to explain to a friend why she should read this story. Why it is so, so sad and yet still so uplifting. Seeing "Tomorrow: Terminal" was a kick in the gut for me, too, and I hardly know how I'll read it. And it is incomprehensible to me how anyone can live through such a horror with the grace and strength of the MTM family. BUT reading and thinking about this story has filled me with admiration for the human spirit, especially its manifestation in the youngest of us. And heaven knows it makes me appreciate my child in ways I didn't before I knew Donna. Thanks for this stunning chronicle.

    Sue

  • I have to admit, I am flabbergasted! MTM is pouring out her heart regarding the nightmare she, her husband and Donna went through. I can't believe that anyone has the audacity to rip her apart regarding her story. If you don't like it, don't read it! When my son was a baby, he was admitted several times. One hospital was great regarding my needs so I didn't have to decide whether or not to leave him to get food. Another was not. When your child is in the hospital, you don't want to leave him or her for any reason. It is terrifying enough without deserting a baby. If you've never had to experience this, you can't judge anyone.

    MTM... please know that your story has touched so many hearts. Each day, I keep checking until you've posted the new installment. I always hope the outcome is not going to be what I know it will be. You and your husband truly are amazing. At each stage, I know you never sat back and thought about yourselves for one second only Donna. Please ignore the ignorant comments that have been posted.

  • Hospital administrators expect customer service as part of patient care, as patient satisfaction survey scores have a *huge* role in profitability and funding.

    Hospitals that are rated as Centers of Excellence (or something similar) can negotiate better insurance and physician contracts and they receive more elective patients from referrals and/or advertising. Being a high rated hospital is also an advantage when vying for private donors, which both for- and not-for- profit hospitals must do.

    Sad that it comes down to capitalism for some, but with this much at stake, hospital health care providers are indeed expected to cater to the reasonable wishes of patients and families, and especially the families of pediatric patients.

  • fb_avatar

    Oh how easy it is for someone to criticize another for actions during a time most of us cannot even begin to comprehend. Honestly, anns you should be ashamed of yourself.

    MTM, I doubt there is much you could have done, save trashed the hospital or abused the staff, that could ever be called inappropriate behavior during a difficult time like that. A parent is a child's advocate. Period. And being a mom, I know that the choices we make and actions we take must be in our child's best interest, others be damned. You are a strong, beautiful, amazing woman.

  • fb_avatar

    Reading this has made me look at my chidren in a diffefent way!! Appericate life and how lucky I am that I was choosen to be their mother!! Thank you for sharing Donna's journey.

  • Since this is a public blog, there will always be one or two negative and judgmental individuals who will leave hurtful comments. Anns, you are a testament to the bitter and hateful population, which is thankfully a small one. This is MTM's place to put her feelings, her thoughts, and her experience into words. Your lack of sympathy and empathy speaks volumes about the type of person you are. MTM is stronger than you think, which is clearly evident in her journey with Donna. grrlWednesday said it herself, patient satisfaction surveys contribute a lot to a hospital's success and it's those little things that matter. Things such as nurses bringing you food because you can't leave, being allowed to keep your infant with you while you care for your other child, and caring about everyone in the immediate family, not just the patient. It's not selfishness or tantrums, it is a matter of self sacrifice. MTM wanted to care for both children so neither lacked her love. There could have been other people to care for the little one but as a mother, you learn to do more than you think you're capable of. I commend MTM for her perseverance, strength, and tenacity. When my father was in the hospital for radiation, chemo, transplants, etc, my mom wanted to be by his side but also felt compelled to watch my children while I worked. Anyone else could have done it but she didn't want them anywhere else but with her. My two toddlers grew up on the oncology floor. I don't know how any of us did it but even when I wasn't at work, we spent all of our time there. Their Christmases were spent in a conference room, opening presents with Grandpa who had to wear a mask as an added measure of protection against infection. anns, you know NOTHING. I hope that you NEVER experience life with the big C. MTM, thank you for your daily writings. Thank you for sharing Donna's loveliness and beauty. I will never forget meeting such a lovely girl through your writings. Thank you also for helping me remember things I had bottled up in dealing with my father's cancer. It is a fresh pain, but a good one that I had to feel and come to terms with.

  • For the sake of humanity, I hope anns is not in the healthcare field, I felt kicked in the stomach after reading her post. On to bigger and better things:

    MTM, Your story is so touching. I admit I was one of the people that started reading and then stopped. I have FIVE children and it was just to painful to read. I have not stopped thinking of you and Donna, so I came back today and have cried a bucket of tears. My youngest, Lilah (3yo) woke up and sat in my lap, noticed me crying and just held me tight. I clung to her.
    Your story is working. Getting people's attention about pediatric cancer. I admit I was one who was in the dark, taking life and my children's life for granted. Us humans tend to do that. This has sparked something in me, Once I get my bearings straight and stop crying, I will do whatever I can to make a difference.
    Thank you and thank your family for sharing such a beautiful story. I am a believer and God does not give us anything we can't handle. We are strengthened by turmoil and come out a better person.
    MTM, you are my hero. Donna is also! What a beautiful person she was- and still is. She lives forever in your hearts and your reader's hearts. How is MTM Son? He is a sweet little bundle of joy. Which I am sure he is bigger now. Not sure how old he is now, but does he ask about his big sister?
    Again, thank you for your story and God Bless,
    Shellmabelle

  • Let's not waste anymore space that could be used for 'good things' trying to talk to or explain things to 'anns'....people like that will never get it so don't waste a moment on them! Don't give her the satisfaction of a comment.

    Instead I'm choosing to focus my energy on doing something positive in memory of Donna today!

  • MTM I am very inspired by you, your family and your beautiful Donna. Your story has completely touched me to become a better mother, wife and human being. Your beautiful Donna has made me a better person.

    Keep writing, your work is amazing.

    I keep looking back in here for the next installment but was unable to find it, I read with hope but I know that Donna is among so many beautiful angels!! Love you MTM & Donna.

  • i hug my 5 month old son tighter after reading these installments. i make more memories, i take more pictures, i am present in the moment, for more moments. i will think of Donna every time i take my son to the doctor, i will think of Donna every time i see a small child with no hair, i will think of Donna every time i pass Children's Hospital in Chicago. I will think of Donna, I will think of Donna, I will think of Donna.

  • fb_avatar

    MTM and family, thank you for reminding me that it is possible to find beauty and peace and meaning even when tragedy strikes. And thank you for reminding me that there is nothing (not cancer, not callous stupidity) as powerful as love. I am overwhelmed and inspired by your love for Donna-- by how that love made it possible for you to be present for her in all ways and always. And I am also overwhelmed and inspired by Donna herself-- by her courage, her kindness, her grace. Thank you, Donna, for reminding me to live in the moment, thank you for modeling what it means to always strive toward whatever joy may be within grasp. And thank you, MTM, for sharing your story. Keep writing. I'm reading.

  • fb_avatar

    Anns-There is a special place in hell for people like you...
    Mary Tyler Mom, My Daughter, Zoey, Passed away at the age of 2 in 2004. Needless to say, I just recently started to grieve. I do not attend groups or the like, but reading the story of your amazing Donna...Has touched my heart and soul in such a way...Dare I say it is helping me heal? I know it may sound odd to some, but reading Donna's story so far, has re-instilled in me what is important. Thank you...To you and your family for your strength and courage. Thank you from the bottom of my tattered heart

  • In reply to krisstanamus:

    I was going to say that, or at least a warmer room in heaven! Anyway, glad you are healing now. Let go and let God. So sorry to hear about your beautiful angel, Zoey.

  • fb_avatar

    I think there's only one thing to say in response to anns. Let's have it said and leave it at that. BACK IN YOUR CAVE, TROLL.

    Much love MTM, Donna & other reasonable human beings.

Leave a comment