Donna's Cancer Story: Transplant, Part I

This is the 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.

I've never run a marathon, but I have seen a daughter through a stem cell transplant.  So there's that.  After the decision was made to transplant Donna's own stem cells back into her body after a mega-dose of chemo, we tried to prepare for the unknown.  That's a hard thing to do.  We met with the docs, we asked to be connected with another family that had been through the same with a young child.  We tried to focus on the 85-95% of children that survive their stem cell transplants. 

A week or so before the scheduled date of admission to Children's Memorial to begin the chemo, we had a sit down with the stem cell doc assigned to Donna.  While we waited in the meeting room, we couldn't help but notice the Xeroxed flyer for a little girl's memorial service tacked to the bulletin board behind us.  It was purple. 

The doc was very informative, though cool.  His manner was very different from our oncologist we had grown to love and rely on.  He talked stats and numbers and had a list of risks and side effects.  He calmly told us that the treatment would make Donna infertile.  That she would require hormone replacement therapy (HRT) starting in adolescence to develop along with her peers.  Puberty would not come naturally.  Donna would also require growth stimulants as the toxins would stunt her natural development.  Our girl who had always been petite and delicate would remain so.  She went into her transplant at 28 months and 24 pounds. 

This doc was tough, all business, minimal eye contact.  That kind of bedside manner is hard to take when you're a parent, but you have to respect what this man does for a living.  One in ten of his patients die and they are all children.  It took a while, but in the end, Donna melted him.  He began to gift her books and she returned the favor with drawings or paintings.  Relationships are everything, even in cancer. 

We wouldn't be admitted until late in a December evening, so on Donna's last day at home we worked to create some holiday cheer for the girl.  In the morning we visited the Christmas trees at the Museum of Science and Industry.  We came home for a final nap in her own crib, woke up for dinner and got the call about 6pm that Donna's room was ready.  It was snowing and beautiful.  A heavy, gentle snow.  We drove slowly along residential streets to look at the holiday lights.  There was no rush to get to the hospital we would call home for the next month.  Donna was happy.  We were anxious.

One of the many things that made us anxious was finances and medical expenses.  Our insurance company had denied Donna's stem cell treatment as "experimental."  The financial director at the hospital remarked that the denial letter was one of the "tightest" she had ever seen.  We consulted an attorney, but had no energy for that kind of fight.  With help from the financial office, we applied for Public Aid.  Say what you will about Governor Blagojevich, and there is a lot to say, but he had championed legislation in Illinois called All Kids that made it a legal requirement for all children to be covered under insurance.  That meant that because a for-profit insurance company had denied Donna's medically recommended treatment, the State of Illinois assumed the financial burden for her stem cell transplant.  To the tune of $600,000.00.  From the bottom of our weary hearts, THANK YOU, taxpayers of Illinois.  Were Donna to be diagnosed today, this option would no longer be available to us, as families that fall above a certain income level are now disqualified; that $600,000.00 expense would fall to us.   

Over the next seven days, Donna received more chemo than seemed humanly possible.  The poison had names like etoposide, VP-16, thiotepa.  Thiotepa is an especially melodic string of syllables, isn't it?  Thiotepa is a bitch.  While it is being administered over a series of four days, the strength of its toxins are so potent that Donna was required to take four baths a day.  At 8am, 2pm, 8pm, and at a ghastly 2am, Donna was carried to the tub to rinse and clease the residue that was excreted from her skin. 

 
stem cell transplant bath<
 

On Donna's chest is her port, with the beloved tubie flung over her shoulder.  The arm has the PICC line that was installed specifically for the transplant, allowing another means into and out of Donna's body.  Toxins in, blood out.  The blood is how progress is measured (through the presence or absence of white blood cells) and infections are identified.  Soon after this photo was taken, an NG tube would be placed.  Sixteen inches of tubing running from her nose, down the esophagus, directly into the stomach.  This was how nutrition was maintained during the transplant.  So many tubes . . .

After chemo was administered and a day of "rest," Donna was moved to an isolation room.  This is where we would spend the remainder of Donna's stem cell transplant.  The room is small, but private, so that is a bonus.  The photo below is a good shot of Donna's small room, which had its own ventilation system and a small adjoining ante room, where visitors needed to scrub and gown every time they entered or exited.  When one child leaves and before another arrives for their transplant, the rooms are scrubbed floor to ceiling and the furniture is scrubbed with toothbrushes.  One errant, industrious germ is enough to kill a kid that lacks an immune system.  There are eight of these rooms at Children's Memorial and they are almost always full. 

Donna's room was decorated with "bubbles" from friends and family that had been requested on her caringbridge page.  Before we moved in, the Child Life staff had asked what licensed characters Donna liked.  The staff would then decorate the room before we arrived to make a cheerful home for Donna while she healed.  The thought of dozens of Doras or Caillous staring back at me for weeks was too much to handle, so I asked readers and supporters to send along their well wishes in a "bubble" to decorate the room.  They were beautiful and kept us company during some dark days.  Those bubbles now decorate the walls of our playroom.

IStem cell room

If you look closely, you'll also see two pictures of Wonder Woman on Donna's bed.  They were given to us by friends and were taped to Donna's bed at each admission.  A reminder to all that Donna was a superhero, powerful, and not to be underestimated.  As I was packing for the transplant stay, I pulled out the Wonder Woman cards and Donna grabbed the one at her head where Wonder Woman is holding open the jaws of a dinosaur.  Donna looked at it and said, "She's going to fight that beast away, but right now it's scary."  Amen, Donna.    

Tomorrow:  Transplant, Part II

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  • I don't know how you made it through all of this. I would have lost myself. Goddess bless you and your family.
    Donna's story and her light is reaching so many people because of your bravery and ability to continue to talk about her.
    She will forever hold a place in my memory, even though I never met her.

  • In reply to kantal113:

    I am a firm believer that you find the strength when you need it. Mary Tyler Dad and I are not super heroes, just a mom and a dad who loved their girl.

    Telling Donna's story is how I parent her now. Thank you for reading.

  • You, Mary Tyler Dad and Donna are heros. I honestly don't know how you did it. Just reading this hurts.
    I'll be here reading everyday and hopefully learning from you and your beautiful strong daughter.
    Blessed be to you and your family.

  • In reply to samjo06:

    Oh, you will learn. Thank you for sticking with us. It takes guts. Things lighten up on Sunday.

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    Every day I cannot wait to read this. I too have lived this story with my son, although he was in his late teens. We too were at Childrens and probably with the same doctors. He sadly passed last April and it occurred to me today that I actually miss this. I know most people would tell me to be committed but it would mean that Elliott was alive and he had hope. You are doing a great thing telling it this way and you are a very good writer. And Donna, what can I say except she melts my heart. I would like to talk to you about some things with you if you are interested. Please email me at elliottsmama@comcast.net

  • In reply to Cindy Lobe Aldrich:

    Cindy, Elliott was in the room next door to Donna during their transplants. I know lots about him as I followed his caringbridge site after talking to your husband in the hall a few times. I know he had a BMT, not a SCT. Very tough stuff. I am so sorry for his death. I hope you and Dan are holding up okay. If you don't mind, I will connect with you in early October. This project is kind of all consuming this month and after work and the toddler, I usually don't start writing until 9 or 10 each evening. So nice to hear from you!

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    Mary Tyler Mom,
    I found your story through a fellow cancer mom who posts you on her page everyday as a reminder to read you. From the first day I was hooked. You speak so lovely for all us parents out there who find it hard to express in words what we are going through or have gone through. Your strength and grace are amazing. Your Donna is so beautiful!
    I LOVE the Wonder Woman cards. My Kelsey had Superman pjs in pinkand a t shirt she would wear and went through a phase where she had to watch Superman on tv all the time. Simply amazing what kids gravitate to. Definitely super heroes!
    God Bless you and youwonderful family!

  • In reply to Danielle Behnke:

    Thank you, Danielle. Cancer Moms are some of the most amazing women I have ever met.

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    =( poor baby girl

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    Reading your comment about Wonder Woman reminded me that I never really cared much for the Incredible Hulk, until I tucked in a little boy with HIV my first night at summer camp (in 2004) and thought that maybe having the picture of big, strong Hulk on his blanket made him feel safe.

  • In reply to Roger Donley:

    Truth be told, Roger, Donna was so young that I think I loved Wonder Woman more than her, I needed her to believe that Donna and I were invincible, could be invincible. Thank you for sharing these posts, too.

  • I've been wanting to read your story all month now, but have been so reluctant. I think it's fear. So much easier to stick your head in the sand. I'm so blessed, and you were/are too, but in much different ways. Thank you for using this as a teaching tool. If nothing else then to just make us appreciate every day just a little bit more.
    I, like most moms am pretty overwhelmed, but feel I have no right and think I'll never complain again (but probably not true :). Being in the medical system and a part of that world for so long, is there anything I/we can do to help kids in the cancer unit?

  • In reply to kirby:

    Kirby - thanks for your comment. And no worries. I remember having thoughts before my Mom and daughter were diagnosed with their brain tumors, "Wow. Cancer has never touched my family. We are really lucky." Then, bam, and that's how life is. We just don't know. And I think Donna teaching folks to appreciate their lives more is a really good thing.

    Donna's Cancer Story will end on October 1, but the next day, October 2, I will write a final post about how folks can help. There are a few charities that do really amazing work funding pediatric cancer research, and we started a charity to help kids in difficult situations, like cancer. Keep reading and thanks so much for your interest.

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