I have made it quite clear what I think is best for my daughter. My approach is that I am the CEO of the company “My Tori has a Brain Tumor, Inc.” and that essentially everyone else is consultant and that I do have options. I definitely don’t know everything, but no one else knows my daughter, my family, or our ethos better than me, and that has to count for a lot. You may be bothersome, but guess what, it is your child, and you have that right.

When my Tori came out of surgery for a multicentimeter, standard risk medulloblastoma, she was blind, mute, her right eye turned all the way in, she had right facial droop, was unable to swallow, she was paralyzed in the right leg and both arms, incontinent, irritable and very hypotonic (floppy): essentially the severe end of cerebellar mutism with several regular neuro complications thrown in. They initially did not want to send her to a rehab facility and I got the feeling that they did not think that she was a promising rehab candidate.

The rehab doc and our neuro-oncologist (independently) told us it would be about 3 years until she could walk again, and the rehab doc added that that might even be a little optimistic. Well, essentially we did a lot of stuff ourselves using the therapist as guides. We got tapes to play for her so she could listen to music and stories. We read books. We described everything going on in the halls. I brought in a little shopping cart from a local store (one of the heavy metal ones) that she could use as a walker when her left arm came back (she couldn’t use a walker because her right side was too weak and she wouldn’t tolerate the arm being strapped in). She was able to guide the shopping cart by putting her left arm in the middle of the bar and pushing.

I actually had a box of sand in the room for her to dig through and find treasures (one with about 25 pounds of sand). She also had shaving cream to play with and we had syringe battles (like squirt guns). I got bath sponges and we made a shield from cardboard (that I velcroed on her arm). We had battles throwing the bath sponges. It is not quite 18 months later, and she has regained her sight and speech (albeit a little nasal and often slow). She is able to walk on just about any surface, play on a playground independently, swing, slide, and climb ladders. She goes on the trapeze bar and she can do chin-ups and flip over. She finally is not tube fed and she can write. Hospital staff need to believe that these kids can come back and go on to do normal kid things.

Our son was diagnosed with medulloblastoma when he was 2 years old. He was inpatient for most of the first 6 months, then on outpatient chemo for 18 months. He had intensive rehab while in the hospital. When we were at home, I accessed the city early intervention program. He had physical therapy, occupational therapy, speech therapy, and an itinerant teacher each twice a week until he was 5 years old, when he became ineligible. Now we get the services he needs through the school system.

Alissa’s had multiple operations for an astrocytoma. One of her best friends at the hospital is Julie, a recreation therapist. One time, Julie came in with some paints. She just started painting, quietly, and then Alissa started painting. They’ve bonded and Julie always comes by now to work with Alissa. All the recreation therapists come to see Alissa when she’s in for an operation. They come see her right before surgery and stay with her until she goes in. Alissa’s taking oil painting, taught by adults, once a week. She is using her hands, using the parts of her body that work, and she is doing very well.

Last Friday, Tori had her dance recital (tap and ballet). For me, it was a completely overwhelming experience. In the fall, I looked around for a place that was willing to take her since she was fairly disabled from her treatment for medulloblastoma. Finally, I found that the YMCA would enroll her in their Saturday morning program. Although she was 6, I put her with the 4- and 5-year-olds. She is tiny and no one really knew the difference.

When we started, she did most everything from a chair and often would just sit and watch. Later, I would kneel behind her and hold her waist as she tried to do the front and back points. Over winter, I had to decide whether she would be in the spring recital. It was hard: getting up to get there by 9 a.m. every Saturday, watching how hard it was for her, hoping that she would be able to go on stage and not be frustrated or embarrassed. During dress rehearsal the doubts multiplied. Would she be too cold in the skimpy outfit (beautiful but sleeveless and very, very short)? Would she slip and fall as she only wore the tap shoes once before? Would she go on in front of 200 people or so? Would the sound system bother her? Would the bright lights make her shield her eyes? When the curtain opened, there she was standing so poised and absolutely stunning. She did the entire routine. She didn’t look different than any of the other kids. Most people in the audience had no idea how incredibly fantastic it was, how she could weight shift, point her toes, jump, move side to side and all in tap shoes! It was truly a moving moment.

Our 6-year-old son has slower speed than his peers. He also has a visual field cut and partial seizures. Our local Jewish Community Center has an excellent swimming and camp program. Our son was assigned an experienced counselor for a swimming buddy at camp. They also provided lessons in soccer, archery, and tennis. Our son sat out any activities when he was too tired. There was no pressure, and it was very supportive. The nurse handled the few partial seizures quite well.

My Anjulie, who had a diffuse brainstem glioma, had aquatherapy and it benefited her greatly. Not only did the water calm and soothe her, but it provided her with much needed freedom to move. The water pressure also helped her digestive system and lungs, too. Anjulie loved swimming and she worked hard at all of her games while in the pool.

A new girl approaches. The same lilting gait as my daughter who had a brain tumor removed 3 years ago. The new girl lifts her face to the horse. She turns her head to see him better. The child steps forward and wraps her arms around the middle of the horse, not the head of the horse. She buries her face there and lingers. As a part of WE CAN, a parent support group for families of pediatric brain tumors, we invite other survivors to meet our horse and learn to ride.

“You brush the way the hair grows,” my daughter says, showing her how to move her hand. “Before you can ride, you have to pick the horse’s feet.” She leaned over beginning below the knee, squeezing her fingers down the length of the horse’s hock until he lifted his foot. The other child stood by the leg trying to mimic the movement. Together they run their hands down the length of the horse’s leg, which yields easily this time.

The new girl’s mother said, “With all of the tests we’ve been through and the surgeries, sometimes it’s difficult to be normal. Being here in the dirt, having something to talk about, feels like we are mending something between us.”

I knew what her mother meant. I had also found that my daughter’s riding, her self-induced therapy so to speak, gave her something that made her feel good about herself. In a way I felt the riding was re-circuiting her brain’s functions, repairing the damage to the left side of her body, damage from the encroaching tumor and surgery. For her it was simply the smell of horse, the feel of it, the fact that he would be there to listen if she needed him.