Category: Guest Bloggers

http://embed.newsinc.com/Single/iframe.html?WID=2&VID=25195296&freewheel=90921&sitesection=chicagotribune&height=281&width=500

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Sarah Bolenbaugh

Abigail is my older child, now 6 years old.  In March 2008, she was diagnosed with Pre-B Lymphoblastic Leukemia with MLL Rearrangement, otherwise known as Infant ALL.  It is a rare and aggressive form of leukemia with dismal prognosis.

Abigail is lucky.  She survived.  For every Abigail, there is a baby that doesn’t survive.  There is a Piper, a Matthew, an Evelyn,  a Tyler…  Here is Abigail’s whole story in 90 seconds.  How am I supposed to fit two years of hell in 1,000 words or less?

Here’s a brief introduction, or as I like to call it … the worst case of mommy guilt ever.  At around eight months old, Abigail was sick for the first time.  Her only symptom was a high fever. [Sidebar, one of those feverish evenings, as an attempt to make Abigail laugh, my husband put a pink bandana on her head.  I told him to take it off because she looked like a kid with cancer.  Oh yeah – and that’s not EVEN THE BEGINNING of the mommy guilt.]

It turned out that Abigail had a urinary tract infection.  Long story short, she was in and out of the doctor about five times over the course of a month.   However, even after a round of antibiotics, she didn’t seem to be feeling better.  Her fever was gone, but she wasn’t eating or sleeping well and just seemed to be missing her spark.  She also suddenly hated to be on her stomach.  I had chalked it up to teething, which in this short synopsis sounds silly.  However, at the time, believe me, it totally made sense.

My husband wanted to take her back to the doctor – I thought he was overreacting (truth be told, I had already taken too many days off work and really didn’t want to miss any more).  So, husband agreed to take Abigail to the doctor.  Um, yea.  So…..he wasn’t overreacting.

Abigail had a white blood count of 394,000.  Her blood had so many white blood cells in it that it was pink.  Her blood was pink.  We were told that she had a chance of having a stroke at any moment.  If she survived the night, she had a 40-50% chance of making it to kindergarten.  So if we are having a mommy guilt war – I win.  Unfortunately, I so totally win.

Abigail’s prognosis was grim.  The proposed cure was to put her through one year of heavy dose chemo followed by a year of low-dose chemo.  Her leukemia was very aggressive.  Therefore, the treatment was aggressive.  If the cancer didn’t kill her, there was a good chance the chemo would.  Our oncologist told us, in fancier less caustic words, that they gave her the maximum dose of chemo that they could without killing her.  If the left don’t get ya, then the right one will.

Abigail was one tough little baby (remind me to tell you the story about how she got a skull fracture from an IV pole falling on her head – another 20 points on the mommy guilt-o-meter.)  However, her stomach was a delicate little flower.  Chemo did not treat Abigail’s belly well at all.  The nausea and associated puking were awful, but the diarrhea was worse.  The chemo stripped her gut.  The food would go in and shoot right through.  At her worst point, which lasted for a few months, she would poop every 45 minutes.  Every 45 minutes, even at night, I would change her diaper. One night, I decided to try skipping changing the diaper (I thought that maybe I could change it every other poo).   That experiment resulted in a diaper rash that burned the skin off her bottom.  [Ahem – mommy guilt].

Between the puke and the poop, we were doing at least three loads of laundry a day.  We would go through multiple sets of bed sheets at night.  My husband became the expert bedsheet changer.  He could change a set of sheets in seconds (we’re talking Formula 1 tire change out speed).  We would have at least two sets of sheets at the ready for night time switching.  I even folded the sheets in a particular way so that they were easier to throw out onto the bed. [Sidebar – to this day, my husband has not lost his skill.  If a child barfs in the night, those sheets are changed out in 60 seconds flat – zzzzoooom.]

Abigail was skin and bones during this time.  The chemo turned her skin a greenish hue.  It’s hard to maintain weight with 95% of what you consume comes back out.  Through her treatment, she developed a fungal infection of the brain and lungs, chronic C-diff, RSV, and PCP pneumonia.  I don’t have time to get into what they are – but if you google those terms with cancer, the results are not promising.  If the cancer doesn’t kill you, the chemo will.  That’s no joke.

How does a baby deal with these horrors?  Abigail reacted by closing her mouth.  For 18 of her 24 months of treatment, not a sound came out of her little mouth; and absolutely no food went into that sweet little mouth either.  She was fed through a tube that went through her nose down into her stomach.  A wonderful speech therapist taught her sign language.

Besides not opening her mouth, Abigail coped with these horrors shockingly well.    Have a nurse stick a huge needle in my chest?  Sure – you don’t need to hold me down.  I’ll even lift up my shirt for you.  Stick a tube down my nose and tape it to my cheek?  Hey – as long as you have Backyardigans on – we are all good.  Bend me in half for a spinal tap?  As long as Nurse Darryl is there…and some bubbles (and fentanyl) – it’s all cool, man.

All Abigail needed was that one piece of control.  She couldn’t control the horrors going on around her, but she could keep her mouth shut, and she did with a smile on her face.

Over five years later, Abigail is alive.  She is more than alive.  She is smart, thriving, athletic, talkative, sweet, and compassionate. Shockingly, she has no long term effects (yet).   She doesn’t remember a thing. Me?  I’m scarred for life, but better me than her, right?

Full disclosure, Abigail and I are fast friends.  And her Mom rocks.  And I miss them since they moved away from Chicago.

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

http://embed.newsinc.com/Single/iframe.html?WID=2&VID=25195296&freewheel=90921&sitesection=chicagotribune&height=281&width=500

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Kristin Trippe

On the Eve of Christmas Eve, Lilli danced in the aisles of the Nutcracker, twirling as fast as she could, standing on her tippy toes, just like the Sugar Plum Fairy. Dirty looks from hoity-toity ballet patrons flew in our direction for the entire second act. But I didn’t care. Tears ran down my cheeks, joyful, thankful tears, remembering where we had been a year ago.  How lucky we were to be here.

Two days later, Lilli’s leukemia returned. Even if we had been home in our pajamas, enjoying the yuletide, it wasn’t the present we wanted to unwrap. Over a year had passed since Lilli’s stem cell transplant and I had just sent an anonymous letter thanking her anonymous donor for the fourteen billion cells that saved Lilli’s life. For a year, she received nothing but glowing physicals and perfect blood counts. For a year, everything was perfect. And then, for the second time in her short life, everything changed.

Lilli was first diagnosed with a rare cancer before she could walk, talk, or chew. At eight months old, her cancer came suddenly and with a terrible prognosis. Babies aren’t supposed to get cancer. She didn’t smoke or drink or use a cell phone. She didn’t get formula from China or eat too much tuna. All of her sippy cups were BPA-free and her baby food came certified organic. Unlike older children that are diagnosed with leukemia, infants do not respond well to traditional therapies and often relapse after treatment. Our best hope, our only hope, was a bone marrow transplant. After Lilli survived her transplant, we thought that we had won the battle, that she was the small percent that survived the transplant, that didn’t relapse, that didn’t die. We were wrong.

On Christmas Day, we left the hospital, we ate Chinese food, we went home and pretended that we didn’t know Lilli’s prognosis. We didn’t talk of things like second transplants or chemotherapy. We just pretended that Christmas was the next day, and went to sleep. Christmas Redux was one of the most beautiful days I remember. Lilli opened her play kitchen with all the pretend pizza and pans and plastic fruit, walked around it several times and smiled a smile as bright as the sun. She didn’t have to share it with her friends at the hospital, we didn’t have to visit the toy store to play with one, I never had to tell her it was time to put it away. It was her most prized possession and the look upon her face in that moment, the one that said “I OWN that” is a look I will never forget.

Lilli’s leukemia wasn’t normal, and her relapse was even stranger. Instead of showing up in her blood, her leukemia showed up as little tumors in her belly. Little lymph tumors that blocked her intestines, that blocked her urethra, that blocked her bladder. There was no road map for treatment. So we guessed and went for the most aggressive treatment we could think of, another bone marrow transplant, from a different anonymous donor. Lilli’s Hickman line, the tube that came out of her chest to administer her chemo, had been removed eight months prior. To start treatment she needed a port, a direct and semi-permanent line into her circulatory system. A simple, easy, quick procedure that happens several times a week. But nothing was simple, easy, or quick for Lil.

Medical mistakes happen all the time. The wrong medicine is given, the wrong leg cut off, bad judgments made in times of stress. For Lilli, when they placed her port, they missed and put a hole in her heart and lung. She died on the operating table. See, cancer was just the big thing that Lilli had to face. The small things, the sedations, the medications, the steroid fits, the effects of all these things, were just the shrapnel that flew from the bomb that went off. This particular piece of shrapnel killed her. For at least a few minutes. And then by some miracle, she came back. Her heart started to beat, her lungs began to rose and fall with breath. Two weeks later, she died again after a massive infection invaded her lungs. Again, she returned to us. Four months later, we were discharged from the hospital. Lilli had to relearn to walk, to eat, to talk, to throw a ball, to dance. To recover from the shrapnel before the bomb went off again.

Finally, after all this time, Lilli figured out that she was sick. That other kids didn’t have to cart around oxygen tanks or have feeding tubes in their noses. But, like her kitchen, she owned her cancer and would happily explain to other children that this is my picc line, this is my nose tubey.  One day, another child asked her what had happened.  With a straight face Lilli said “Well, one day I ate a chicken nugget and I got sick”. I’m not sure why she said it, but I bet that poor kid hasn’t eaten another chicken nugget since.

The next year was filled with moments of pure beauty interrupted by treatment, transplant, another relapse, and finally, a terminal diagnosis. But through all of it, Lilli remained a child. She played her little purple guitar and her mandolin, she went on walks every day and picked up snakes and bugs and tried to give all the salamanders baths. She picked up rocks and put them in our pockets. She wore elaborate costumes to her radiation appointments. She danced and danced and danced and sang her own song. And we were so incredibly proud of her.

Despite all the treatments, all the second opinions, Lilli’s cancer didn’t respond to treatment. We had several glorious moments where tumors receded. And several others with news that crushed our spirits. That made me vomit. I wore a charm around my neck that read “Hope for Lilli” and another inscribed “Dum spiro, spero”,  in English meaning “While I breathe, I hope.” And even though the doctors said there was no chance for survival, we never thought she would die. Life without her seemed impossible. But again, we were wrong.

It wasn’t tragic that Lilli died or even that she had cancer. The tragedy was in the lack of treatment, the lack of options. That she was too young, or too small to qualify for experimental drugs. That there weren’t any experiments to experiment with.

Lilli died the morning of July 5, six days before her fourth birthday. Just hours before she left we heard the fireworks from the city below. We pretended that the fireworks were for her. She kissed me and she kissed her dad, and she told us she loved us. We sang her favorite songs. Three hours later she took her last breath. She wore her shirt that said “And though she be but little…she is fierce.” It was heartbreaking. We miss our Sugar Plum Fairy in the deepest most profound way.

But her spirit lives on. Her legacy grows. Her hope remains. Love lives forever.

The Chelsea Hicks Foundation sponsors a program that provides costumes and opportunities for children to play dress up during clinic appointments and during hospital stays. Lilli loved to play dress up and have tea parties.  You can donate here.

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

http://embed.newsinc.com/Single/iframe.html?WID=2&VID=25195296&freewheel=90921&sitesection=chicagotribune&height=281&width=500

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Deb Fuller

What the heck?  That is a classic Hope saying.  She had several, but that is my favorite.  She would hold her one good arm out and flip her hand back look at Dr. Stew and say “What the heck?” pertaining to whatever he was saying at the moment.

 

Why am I having such a hard time writing about my sweet girl? What do I want you to know about?  What words can I possibly share regarding awareness and research of childhood cancers that have not already been shared by much better writers than I?

Dates are things that for whatever reason stand out in my head.  Hope was born in South Korea on 6/26/97 and we found out she was ours on 9/19/97.   I always thought it odd that for 85 days I did not know my daughter was even alive.  She came home to her forever family on 1/23/98 and thus it began.

Hope was funny, smart, sassy, sincere, loving, and empathetic.  Hope was important.  She had potential and she would have made a difference in the world.  She wanted to be a doctor or nurse or a pastor.  We cannot possibly measure the loss of her life not only to those of us who loved her, but to the world in general.  She loved music and theater and her brother and she just loved life.

She was only 12 on 7/29/09 when she was diagnosed with DIPG.  Hope Alizah Kimlee Fuller died 224 days later on 3/10/10.  35 of those days were spent inpatient.  So truth be told she only lived for 189 days because after we entered the hospital she never walked again or really talked again or watched TV again or texted a friend again or went to the bathroom by herself again or even ate by herself again.  Those 35 days of beauty and the beast were some of the most tenderly painful moments I think I will ever experience.

Sometimes the beauty and the beast of those days are imperfectly blended so that when I recount them now my heart just aches with the memory, but at the same time I want nothing more than to remember each sacred moment.  One that comes to mind is after we had been inpatient for ten days.

Hope had not been awake or spoken to us at all for a couple of days.  Yet on this day whenever her buddy Grace (Grace was Hope’s lifelong best friend who only left the hospital for 1 of the 35 days we were there) would sit down next to her or lean over the rail to hug her Hope would pop her big brown eyes open as if she was the same girl she had always been.  Inside she was the same; you see DIPG doesn’t attack the cognitive center so while you lay slowing dying you are aware of it all.

Hope loved Grace and while I wasn’t privy to their secret conversations there was a lot of info being communicated through Hope’s beautiful eyes.  Several days later she was suddenly able to get a few words out “I don’t want to hurt any more” while Jay and I were holding her hands on opposite sides of the bed.  It was a gift that she was able to speak and that we clearly understood her.  I told her how much we loved her and how sorry we were that we couldn’t take the pain away and that if she was ready it was OK.  She could relax and we would be fine.  She replied “I’m ready.”  It was 2/10/10.

When you are under palliative care from really the first day of treatment you are not left with any real illusions that you might beat this.  As we lay inpatient over the course of the 35 days there were many highs and lows when we thought she would die and then she surprised us and fought on, even after she told me she was ready on the 10th.  Just when I would begin to think that I wouldn’t hear her voice ever again she surprised me on the 17th with three little words “lay with me.”

One time when she woke up for just a bit she asked for zucchini bread…now that was classic Hope!  The days were so filled with ups and downs and just hours of waiting and watching and wondering that it felt as if time actually stopped.  A couple of days later on the 20th Hope woke up and called my name so clearly that I jumped.  She wanted to know when I was going home and I told her that as long as she was in the hospital it was our home.  She nodded in agreement and I told her I’d always be by her side.

I asked when she thought she would go home and her response was “never.”  We talked about that being OK and that we loved her so much and how much we would miss her, but if it was time, she could go.  I asked her when she thought she’d go home to God and she said “I don’t know.”  Just like that, matter of fact and all.  The next day she actually made us laugh out loud as she mustered the strength to screw up her nose and make a horrible face to indicate that she thought a meatloaf bakery was disgusting.  On the 24th she woke up and said “Hi Mommy, I love you.”

All throughout those days Hope continued to be Hope.  She had secret whispers with her ‘BFF’ Nora.  Nora was the yin to Hope’s yang.  They were soul sisters who were not given enough time to love each other on earth.  One time she used a mix of words and gestures to try to get the top secret title of the next summer children’s theater production.  She promised not to tell anyone.  Another night, somewhere around the 1st of March, she managed to get out two particularly funny statements.  Now they weren’t clear as a bell but she said “My butt hurts my gluteus maximus,” and then she chuckled, knowing just how funny that sounded even to her. She overheard us talking and said “Wow.  I didn’t know Dairy Queen opened today.”

On 3/8/10 Hope spoke her last words to us and with the help of blinking and hand squeezes we were able to say our good byes.  It was after midnight when she asked me to get J.D. and Grace and her Dad to come back to our room.  She was so alert and she was crying.  We were able to decipher that she was afraid, she was scared.  My worst fear for her.  The three of us lay on all sides of her and we talked.  We laughed.  We cried.  She needed us to tell her one more time that it was OK for her to go.  On 3/10/10 at 2:58 in the morning my sweet Asian princess left for heaven.

I am sure you will agree that Hope died like she was living; on her own time based on her own agenda.

What the heck?  I guess I wanted you to know that Hope died.  That her life and death hold meaning and purpose and that you need to become involved.  The most important and most precious natural resources in the country are dying.

Please be aware of the facts about pediatric brain cancer and the organizations and foundations which focus on brain cancer; acknowledge brain cancer awareness efforts, support political action related to children’s cancer research and promote awareness of it.

Through our stories, may your interests be peaked, your desire to help increase, and your increased desire lead to action.  May your actions speak louder than words.  Hope has been gone for 3 years 5 months 2 weeks and 2 days.

I am most grateful to Deb for sharing such intimate moments, her last precious moments with Hope, so that we may learn.  Thank you, Deb.

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.