Sofia's Story

By Dave Wardle, Aptos, Calif. - It has been very hard to write this page because it brings back so many memories, and even the happy ones can still be painful.

Sofia was a beautiful child, a loving daughter, a big sister and good friend to many. To strangers who saw her on the street, she was just a sick kid with cancer and histiocytosis. But to the many who knew her she was so much more. Find out for yourself by watching some videos of Sofia below, or skip forward to read Sofia's story.

Movies

Pink Burrito with Appetite

Sofia was a healthy baby with smooth brown skin, a cute smile and a big appetite. We had always been somewhat anti-pink when it came to baby clothes, but people sent us pink clothes anyway and they looked great on her. We called her the pink burrito when she was all wrapped in her blankets. And when she was older, pink became one of her favorite colors.

Talking about appetite, she had an amazing ability to steam through huge bowls of brown cow yogurt. She went on to cement her reputation as a no-holds barred eater during her first birthday celebration which was shared with three other kids. While the others were grabbing fist fulls of cake and frosting, Sofia held back as if in a daze. Then like a heavy tree ponderously starting to fall, she toppled face first into the cake! Alarmed we sat her up straight, only to have her immediately face-plant back into the cake again! She was doing it intentionally and we realized she was serious about getting that cake!

Even while struggling with her appetite and altered taste during years of chemotherapy Sofia still managed to develop a truly gourmet palette. She would always joke around and pant like a dog if someone mentioned any of her favorite foods like Tempura, California rolls, Pot Stickers, Steamed Pork Buns, Chicken Tikka Masala with Naan Bread, Crepes, Satay Chicken, Tacos and Beef Stew to name just a few. She was always stealing sips of my tea, and when she had her own, in the words of her grandpa "it had to be to tight specifications, with just the right strength and just the right amount of honey."

As she got a little older she developed a head of unruly curly hair. She also developed a love of dressing up, stickers, music and dancing, possibly from watching the Teletubbies (LaLa, the yellow one, was her favorite). She had a natural sense of rhythm and just loved to dance along to any kind of music that had a good beat. Just wait until you see her hip-hop dance video.

Sofia became a big sister when her baby brother Quinn arrived in the summer of 2003. We had the perfect family, a girl and a boy.

Shattered World

Just before Christmas 2003, Sofia came down with a fever and her stomach was distended and firm to the touch. We took her to the doctor and were immediately sent to Dominican Hospital for blood tests. When the results came back, they shattered our world. Sofia had been diagnosed with Leukemia. We were told to take her straight to Lucile Packard Children's Hospital for immediate treatment. From that day on, Sofia pretty much grew up there at Lucile Packard, and sadly would never remember a time that she wasn't on treatment.

Those first few months were dark scary times, with many painful procedures, intense chemotherapy, cranial radiation as well as weekly injections and dressing changes. Of course Sofia lost her hair. But slowly things started to get easier. We were on a nationally recognized treatment protocol. Eventually, treatments became less frequent and less intense and Sofia's hair started to grow back, although not as curly as before.

The Histiocytosis Tunnel

After almost two years of treatment, we were nearing the end of her Leukemia treatment protocol and she was in remission. It felt as if, after a perilous journey through a long dark tunnel, we could finally see some light at the end.

It was not to be. The tunnel had not ended.

Some small lumps on Sofia's hands, which had originally been dismissed as warts, were diagnosed as Langerhans Cell Histiocytosis (LCH). LCH of the skin is not considered high risk, so it didn't seem to be a huge deal. We were concerned, however, that the condition had developed while on the very chemotherapy that would be considered primary treatment for that disease. So we had reached the end of the Leukemia tunnel to find ourselves not out in the open, as we had been longing for, but in another tunnel, although in the beginning the histiocytosis tunnel seemed to have some lights on.

Relentless Treatments

For Sofia, LCH of the skin proved to be very painful, unsightly and debilitating. Over the following years, she would be placed on multiple different treatment regimens including chemotherapy, radiation, topical steroids, daily UV light treatments, and even Nitrogen Mustard lotion, sounding like something used for trench warfare during WWI. Her hair fell out again, but did re-grow, slightly curlier again this time.

It is hard for families with healthy kids to comprehend just how much Sofia had to go through, but one popular scheme that was introduced while we were at Lucile Packard Children's Hospital might give you an idea. The Beads of Courage program helps kids cope with serious illness. The child is given a different colored bead for every treatment, poke, overnight stay, trip to ER, fever, X-ray, surgery, biopsy, hair loss, and any other medical procedure that they go through. Kids on long term treatment accumulate many hundreds of beads and can make some fantastic necklaces and bracelets. Sometimes, if you have a large number of beads, you can trade 100 regular beads for one extra special bead. Sofia had enough extra special beads to make a necklace from them alone!

The disease started out in her skin, it was on her face, arms, and legs. But the worst spots were around her groin, hands and feet. It got so bad that she would try not to go to the bathroom; she had to use her forearms to push herself up off the floor because her hands were so painful; and she ran around on her tiptoes because of the wounds on her feet. This went on for so long that her heel cords became permanently shortened and she had less grip strength than a 2 year old.

Low dose radiation treatment finally seemed to do the trick and cleared most of the nasty skin lesions that Sofia had been struggling with. At last she could start to do normal things that she hadn't been able to do for so long due to the pain, simple things like hold a pencil or pen properly and walk on her whole foot instead of just her tiptoes. It was wonderful to be able to pick her up without accidentally bumping one of her lesions, causing her to scream in pain.

Just when we thought things were on the mend, Sofia started complaining of pain in her underarms. We discovered that her lymph nodes were so swollen that you could see them sticking out of her armpits when she lifted her arms. Now we couldn't pick her up under the arms anymore. She went back on more chemo, which initially seemed to be helping, but then towards the end of 2007 a diagnostic scan showed that the disease was in her lungs. At that point she was getting noticeably short of breath. Our team of doctors at Lucile Packard Children's Hospital had been fantastic but, despite ongoing consultation with other experts from around the world, we were running out of options.

A time of hope

Then we heard of a new treatment, at least new in the treatment of LCH. It had helped another young girl who had lung involvement and she was now disease free. We were hopeful, but this was based on a sample of one. Sofia started the new treatment and within a few weeks was showing signs of improvement. A scan after a couple of months showed that the LCH was all but gone from her lungs, and the lymph nodes were all much smaller. Along the way, she still needed radiation treatment for one or two stubborn skin lesions that were not clearing up.

This was a time of hope. Sofia went off chemo for a few weeks while waiting for what we hoped would be a final diagnostic scan. During her time off treatment, she became a different child, one that we hardly knew, but were excited to get to know. We'd seen glimpses of the real Sofia all along, but we knew that the long years of disease and treatments had been suppressing the sparkling intelligent girl who lay within.

It was tremendous to see. She was putting on weight, getting stronger and running faster (although, at the age of 7, she was still the height and weight of a 5 year old). She was so proud of herself when she could finally manage to first hold onto the monkey bars and then soon after, to get all the way across by herself. Sofia was doing well at swimming lessons, holding her breath, arm strokes, all of it. She could concentrate on things a lot more easily, so reading and writing suddenly didn't seem so hard.

A time of despair

Right around June 2008, when the next scan was scheduled, things started to go downhill again. Sofia had seemed to be getting so healthy, but she started to get the dreaded cough again and, within a few days, was coughing up blood. The scan came back showing the disease, which had almost disappeared, was now back in the lungs and lymph nodes again. Soon the lymph nodes in her neck were so swollen that they were pressing on her windpipe and making it difficult to breath.

We were devastated when Sofia's doctor told us that he didn't think a cure was possible any more, and that we needed to start talking to our local hospice. She was struggling for breath, and her throat was very painful. She would cry out at night and during the day when her pain meds wore off, and swallowing to eat and drink was very difficult.

Sofia just wanted to feel well enough so she could go swimming again, do some shopping at Claire's and go to Chinatown in San Francisco. We took her shopping to Claire's with one of her best friends on the last Saturday, but she never did get to go swimming again.

The meaning of bravery

Sofia simply wanted to be normal, and do all the things that other kids could do. Many times in the morning I would hear cries of pain coming from her room and, when I checked to see what was going on, I would find her dressed and ready for school, crawling to the bathroom on her hands and knees because her ankles and feet were so sore, or because she was so dizzy from a fever. She loved school and her friends so much and hated to miss anything. I'm so glad that she managed to attend right up until the last week.

Sofia loved playing on the monkey bars. She would keep trying and keep trying until the scars on her hands from old lesions were cracked and bleeding. Her hands had been painful for so long that, when they started to clear up late last year, she could barely hold onto the first monkey bar. But she was determined and she finally managed to get all the way across the monkey bars at our local park in the summer of 2008. She was so happy when she did it and we were all so proud of her.

Watching the two-year-old Sofia with her long legs and athletic muscle tone, my wife and I agreed she would be a natural runner. But years of disease and treatments brought wounds on her feet, aching bones, shortened heel cords and damaged lungs. Even so, Sofia still loved to run. To pass the time at the hospital she would have Grandpa time her while she ran laps around the 3rd floor, startling other patients, parents and visitors. Early in summer 2008, Sofia was getting stronger, her heels were more flexible and her wind was improving. One day as we walked down to the park, her little brother Quinn got quite upset because he couldn't catch up with "Sissy". I had to explain that normally big sisters could always run faster than little brothers; he just wasn't used to that.

Sofia said she would be a rock star when she was older and I believed she would be. She had an ipod stuffed full of songs from Hannah Montana, Hilary Duff and High School Musical. And she seemed to know all the words. She even recorded the chorus for a song that I wrote. Every time she heard something new on the radio or watched a movie with a cool soundtrack or listened to a CD at a friend's house, there would be a new song on her wish-list for me to download. I had my laptop in her room and she was picking out new songs to download even on her last morning with us.

Sofia tried so hard to be normal, with such courage, determination and good humor and in doing so she taught us the true meaning of bravery.

Pain and laughter

Her last week was filled with pain and misery. Her pain meds made her dizzy and nauseated and yet didn't control the pain. Often she chose not to have the pain meds for a while, and then she would start to eat a little and be more interested in listening to music, reading a book or watching a DVD. Rebecca and I were at her side constantly round the clock, but the sad thing was that she was in such pain and discomfort that Rebecca and I couldn't hold her or snuggle with her. On the last night I had my mattress right next to her bed, and I left my hand resting against her body the entire time.

Amazingly, even during those darkest of times she still managed to be herself and bring a smile to our faces. One story I would like to share was when I was trying to get her to eat something the night before she died.

"Sofia, you should have a popsicle. It'll feel good on your throat."
"No."
"Come on, big girl. You said it helped last time."
"No!"
"How about a grape one?"

Sofia raises her hand and says something I can't quite hear. "What was that?"

Hand still raised, another mumble. Me leaning closer still, "Sorry, big girl, I couldn't quite hear that."

"Talk to the hand!"

Memorial to a special girl

The further along the histiocytosis tunnel we went, the dimmer the lights got. The end receded until it was out of sight, and finally it was even darker and longer than the leukemia tunnel. Then it all ended, painfully and with so little warning.

Friends, family, neighbors, the whole community rallied around. They have been, and still are, a huge support during the times following Sofia's death. I was amazed and full of pride for my little girl, to see hundreds upon hundreds of people at her memorial service, a testimony to how many lives Sofia touched.

She was an amazing girl. It's hard for me to say that she had a good life, but I would say we tried to give her the best life we could, and she seemed to somehow live every minute of it to the full. When she was feeling good, she had a zest for life that was incredible. Anyone who ever got tackled by one of Sofia's flying hugs will know what I mean.

When she finally went, it was quick and she was at home with my wife and I next to her, telling her we loved her, over and over.

To be Sofia's father was a blessing and a tragedy. A struggle full of love and heartache, ending in withered hopes and unfulfilled dreams. She will always be an inspiration to me and I will hold her memory in my heart forever, like a beautiful star, shining brightly.

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