Parents share diary of child’s cancer battle

Elena Desserich was diagnosed with brain cancer at 5 years old. She began to hide hundreds of little notes around the house — in sock drawers, backpacks and tucked between the books on the shelves — for her parents, Brooke and Keith, to find after she was gone. In “Notes Left Behind,” her parents share the journal entries they kept during her battle, as well as content from the notes left by Elena. An excerpt.

From Part 1: The beginning
Day 1—November 29

It began early. We called it “binner.” With her IV surgery scheduled for 7 a.m., the last time she could eat was 1 in the morning. So at midnight I woke her up to a breakfast/dinner of yogurt — except the nurse forgot to order yogurt before the kitchen closed and we ended up with a meal of pudding and applesauce instead. From 1 a.m. to dawn we talked about “Alice in Wonderland,” her new discovery of the TV remote and what she always wanted to do. And although I couldn’t always understand her words because of the tumor, I could usually understand her drawings.

First came a circle with squiggly lines. This was where she wanted to go — the only problem was that I did not know what she was telling me. After several tries and more than enough frustration on her part, I figured out that she was talking about the “little restaurant” — the chili parlor a mile from our house. With this her face lit up as she told me she wanted spaghetti and cheese. This was a remarkably simple request and we added it to the list. The next one was a bit harder: the Eiffel Tower. To this day, I still don’t know where she came up with this one. Regardless, this was the list and what we needed to accomplish. From there the list continued to the “street of dresses,” which I immediately recognized as a wedding dress district in our town, but I feigned ignorance. It was the same street I had deliberately driven down on the way home with the girls for the past five years, while telling them to pick out their dresses. Now she was asking me to take her to the same shops that I had always envisioned taking her to when she was engaged. Now I questioned if she would ever make it that far. Still, it went on the list.

As the night went on, we continued to talk. She wanted to talk and I wanted to listen. Sleep was not as important as it was three days ago. I watched her face illuminated by the lights on the heart monitor wondering if I would remember every detail: the softness of her cheeks, the dancing glow of her eyes, the innocence of her thoughts. But was it all a nightmare? Would I awake tomorrow and the tumor would simply be gone? Maybe this was just a lesson from life and by tomorrow the tumor would miraculously disappear. I could only hope.

That night, the doctors sent us home for rest, but after they told us that our daughter had only 135 days to live, sleep wasn’t in our plans. Still we smiled, wiped the tears from our eyes and tried to pretend that everything was all right. But it was Elena who had the best suggestion. Before leaving, she wanted to celebrate Christmas. So we took time to carefully find her precious Jesus and angel ornaments and hang them on the tree that the grandparents had hastily put up only minutes before. Ironic, because in previous years, I’d always insisted on not putting up the tree before December 15. Still, this year it couldn’t come soon enough. Brooke read the girls a book before bed. It was the longest book we could find.

Day 2—November 30

The trip to Memphis was a long one. Elena has been accepted into a program there, offering experimental brain stem treatments, so we booked the first flight out. God love Elena and her desire to be pretty. To protect her from sickness, we took all of the necessary precautions, from air scrubbing and cleaning the home to getting flu shots for the entire family. Lastly, we brought dust masks from the hospital to have Elena wear on the plane. She would have none of this. Of course, she did appreciate being wheeled around in a wheelchair like a queen on a throne, but to wear a dust mask was just too much. After all, how would her fellow passengers feel about her looks? After much prompting and prodding, we both ended up wearing masks. She said I looked silly.

Airline clearance was another issue. With Elena and her drugs, it took a good hour to get through security. It took another hour to get Mom past all the gift shops. Whatever Elena wanted, she got, as Mom caved and bought her a new Beanie Baby and ice cream. If we had passed any more gift shops through the terminal, I’m certain we would have gone broke.

TODAY Elena Desserich, right, with her family.

Two hours later we were in Memphis. There we were introduced to the new hospital and our new regimen. Contrary to previous conversations, the pace was fast as Elena received the attention she needed to give us a fighting chance. Before the evening was out, we had had four consultations lasting over one hour each, two X-rays, an orientation and a new home. She was exhausted and so was I. We ended the evening in the hotel room reading the get-well cards written by her classmates from kindergarten. She crawled into bed clutching the cards beneath the covers. I’m still trying to figure out how to get them away from her before she falls asleep. So far, so good. Two days into our time and we’ve met all the right people. We’ve even taken care of two of Elena’s wishes — to put up the Christmas tree and go to the airport.

Day 3—December 1

For the first time, we saw a picture of the tumor. It’s not only large, but concealed within the walls of Elena’s brain stem. The prognosis isn’t good. Originally, we were told that we would have three to six months. It’s little reassurance that now the doctors say possibly seven months to over a year. That’s still not enough time to see my baby’s driving lessons, first date, wedding or children. The milestones that we remember most in life have been ripped from her hands. No chance, no hope. But it’s still months and right now anything is better than what we were originally told.

A note left by Elena Desserich for her parents.

Elena’s getting very tired now and has developed a fear of anyone with blue gloves. After all, these are the same hands that poked and prodded her for the past week. I think she fears the gloves over the shots at this point. I’m thinking of buying a pack of clear gloves for the doctors in her wing just to calm her anxiety. She’s also started to listen and ask questions. I’ve always known that Elena listened to our conversations, but now she’s added to her vocabulary words such as “IV flushing,” “MRI” and “CT scan.” Somehow I always knew she would learn about all of this if she ever decided to become a doctor, but I never imagined she would be getting this education as a patient. But now she listens intently while I try to conceal the truth of what we face.

Tonight we decided to treat her to a dinner of her choice with her cousins, who drove up from Alabama to visit. It was a good idea at the time, but by the time we ended her doctors’ appointments at 7 p.m., it was a bit late. As a result, while she enjoyed the balloon art hat that we had made for her, Elena didn’t make it far into the meal before she fell asleep on her aunt’s shoulder. From there her fatigue only contributed to her condition and we ended up having to carry her out of the restaurant or risk her falling over her own feet. I know she needs the company, but right now I think she also needs the rest. She has had a rough week and it’s just the beginning.

Day 4—December 2

Today was a good day. It was Saturday and we didn’t have to go to the hospital — all we had to do was make Elena smile. She was tired this morning, but also very hungry for waffles. After waking up at 6 a.m. from her open-eyed and teeth-gnawing sleep, all she wanted was waffles with butter. At first we couldn’t understand her with her limited voice, but thank goodness she could at least spell “WFL” to communicate her wishes. She had to have waffles with whipped cream, chocolate chips and cherries for eyes. And except for the cherries, she ate the entire thing. Must be the steroids working.

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For the first time, Elena has now lost sensation in her thighs. Now she has a limp in her right leg, no gag reflex, limited ability in her right arm, loss of left-eye peripheral vision and reduced sensation in her legs. I know this because in an attempt to raise a smile, I tried to tickle her most ticklish part: her knees. It used to be that all I needed to do was motion toward her knees and I would instantaneously get a wide-mouth smile. Now she simply looks at me with annoyance. I miss tickling my little girl. For a dad, it’s always about more than horseplay — it’s a way of expressing my love. I’ll just have to find another way to make her smile.

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