I had astrocytoma and had lots of radiation, surgery, and chemo. I also had a spinal hemorrhage. I got kyphosis afterwards and when they operated on that they had to take out part of my spine. The bones were very brittle and they did a spinal fusion. I am now in a wheelchair. I can feel my lower body, but I can’t walk.

I was treated for ALL 25 years ago. I got a lot of peripheral neuropathy on treatment. The sensation in my feet and my muscle coordination are still off. I was never as athletic after treatment as I was before.

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Judd finished his treatment at age 6 and had some muscular weakness. He tried organized sports, but preferred individual sports like skiing. Over several years, he gradually regained his strength and coordination so that his athletic ability is average.

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My daughter was off the scale on her reactions to vincristine. During the first part of her treatment for high-risk leukemia, she couldn’t walk, lift her head, even open her eyes. It has been 7 years, and despite lots of therapy, she still walks flat-footed, has generalized weakness, and is a couple of years behind her peers in gross motor functions.

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The massive doses of vincristine used to treat my son’s rhabdomyosarcoma exacerbated what were already existing sensory integration issues and motor problems. At diagnosis (age almost 5), he was not drawing recognizable pictures yet or able to write his name legibly, much less tie shoes or do other more complex activities with small motor skills. He was lagging in gross motor skills as well, but definitely dropped back a lot in balance and coordination during chemo, experiencing substantial foot, ankle, and wrist weakness and neuropathy in the hands and feet. He started kindergarten at age 5, unable to handle a pencil, unzip his lunchbox, zip his coat, or get safely up and down the stairs to his classroom by himself. It took fighting tooth and nail to get him in-school occupational therapy and physical therapy services because he was reading at the fifth-grade level and therefore not “learning disabled.”

At 8 he still has foot-slapping and is having major problems in motor planning. We wonder if the extreme muscle weakness/poor muscle tone is just from the chemo exposure or would he have been where he is now anyway? Our guess, of course, is that the chemo had an additive effect on an existing problem. We find our oncologist is a little defensive on the subject (I guess doctors have some guilt about what treatments do to kids, too), so we don’t discuss the motor and muscular issues up in clinic. It’s hard—of course we know there was no way to avoid the chemo, but that doesn’t alter what we’re dealing with here and now. We wish they would share more hard information with us on the length and severity of these late effects and just what areas they are actually known to affect, so we’d have known what to be looking for a long time ago.

My son was treated for leukemia and relapsed twice, then had a bone marrow transplant. He’s had cranial radiation, spinal radiation, lots of vincristine, and lots of intrathecal methotrexate. He has partial nerve damage to the muscles running down his legs, and also in his feet. The doctors do not feel this will improve. His only recourse at this time is major physical activity, gaining strength in muscles that he can. This would include weight lifting machines and long distance running. We have not started this yet. He is not too thrilled about it, and he is old enough to make up his own mind. He is very much a team player, and does not enjoy solitary activity, so I would need to get a personal trainer for him.

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My 7-year-old daughter was born with neuroblastoma, relapsed at 3 months, then developed a brain tumor at age 5. She has neurofibromatosis so she’s at risk for multiple tumors. She’s had over 5 years of chemotherapy, including lots of vincristine. She had massive acute neuropathies, but the long-term effect is paralyzed tendons in her left ankle. I wanted to make sure it was neuropathy and not some other treatable problem, so I took her to an ankle and foot orthopedic specialist in Manhattan for a second opinion. He gave her a very thorough exam and said it was a very localized neuropathy that affects two tendons in one ankle. It causes her to walk on the outside of her foot and makes her unstable. She now wears a brace that helps her foot align properly.

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The nerve damage isn’t clear-cut. Tim had severe foot drop from the vincristine while on the relapse therapy. He had some foot drop on regular therapy, but not bad and it did resolve. During relapse, he was also very weak and in bed most of the time. After Tim’s treatment ended, the heel cord stayed tight. We were told it was probably a combination of nerve damage from the vincristine and a lack of exercise and having his feet in a prone position for so long. He got braces and wore them whenever he was at school. He also walked a lot more. We hoped that would be enough to straighten/lengthen it again. Unfortunately, his feet collapsed more and more. The braces were always rubbing and uncomfortable because of the position of the foot.

This past spring, we saw an orthopedic doctor. He determined that the braces would not work without further intervention first. We had the choice of surgery to lengthen the heel cords, or a series of casts. We decided on the surgery. His feet are in much better position now, but still not “normal.” The left foot, especially, will only go so far. He will likely need a brace on the left foot permanently, and at least a shoe orthotic on the right.

One big problem with late effects is that sometimes it’s hard to know what’s caused by cancer and what’s not. For instance, I’ve used crutches for 25 years. The doctors told me that this might affect the nerves in my hands and arms. And I have noticed less sensation in my hands. My fingers are just not as sensitive as they used to be. But it’s been 21 years, so maybe it’s because I’m getting older. I don’t know if this is natural because I have nothing to compare it to.

I had 4500 rads of mantle radiation 30 years ago. I don’t have any pain in my legs from the neuropathy. I do have pain in the middle and lower back on my left side, which is probably where the nerves are being affected. Besides loss of strength in my thighs and hips, the upper legs feel like wood. Not really numb, just kind of heavy and stiff. I have a small foot drop but do not need a brace yet. I’ve fallen only a couple of times—don’t know how many falls it will take before I look for some kind of aid.

What I struggle with mostly is how much energy it consumes to move around. Walking is no longer an automatic, unconscious process. I have to stay aware of where I’m walking—a simple sidestep or bump from my dogs and I lose it. My right leg over-extends as a way of compensating and that makes my stability worse. So I’m always reminding myself to flex that right knee. It just takes a lot of energy to move about and it’s pretty clumsy at best.

My neurologist has told me there is no treatment—just perhaps braces, walkers, wheelchairs, etc., to help adapt to the limitations, but no magic pill or therapy that will reverse it. I’m grateful that there isn’t much pain associated with it so far—have enough of that to deal with in my neck and shoulders right now from the fibrosis and atrophy. When my hubby massages my back, I also find that my walking is easier for a short while. Maybe getting the muscles softer and circulation improved allows more nerve conduction. Don’t know. I do grieve the loss of my leg functions. It’s just a sadness, no anger.

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I had lots of problems when I was on ABVD. It just freaked me out. It was like my legs were asleep from the hips down, and it hurt very, very badly. I couldn’t stand up for longer than 10 minutes at a time. It was one of the creepiest side effects. Now I have late problems as well—peripheral neuropathy of unknown origin, but obviously possibly related to treatment—and am on chronic medication to manage the excruciating foot pain that it causes. Fortunately, my doctor worked out a winning combination with me and has been great about helping me cope with it.

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I was diagnosed with neuroblastoma when I was 5 months old. I had 3 years of chemotherapy, including vincristine. I have no late effects to my nerves at all.

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I had 7 weeks of radiation to treat Hodgkin’s in the early 80s. I developed permanent neuropathy in my fingertips. It freaked me out because I was a clarinetist. At first it felt tingly. Now if I rub my fingertips it just feels dead. It’s a nasty side effect, but the best side effect is my survival.

My daughter Terri was diagnosed with an astrocytoma in her spinal cord 5 years ago. The pressure from the tumor has damaged nerves and her left arm hangs by her side most of the time. The left arm sits most comfortably when twisted with the palm facing backward. Her left arm is shorter and smaller than the right and I don’t think it is growing very much at all. There is no expectation that she will ever get movement back again. In 1994, Terri’s left shoulder began twitching. This was diagnosed as spinal myoclonus and may be due to either scoliosis or the tumor itself. The shoulder continuously twitches every 3 seconds. Despite this, Terri is very happy and healthy and enjoys school.

When I brought my daughter to the endocrinologist 3 years after her treatment for leukemia ended, he asked her to hop up on the table and she couldn’t. He looked at me and said, “Get this child into physical therapy. She should be able to do that easily.” She’s had physical and occupational therapy for 4 years now, and is much improved. Her legs remain straight rather than flailing around when she runs and her balance is much improved. She is still about 2 years behind her peers in gross motor function, though, and I don’t know if she’ll ever really catch up.

My son’s leukemia relapsed twice and he had a bone marrow transplant. The vincristine did a number on his hands/arms. His muscle damage is very obvious in his hands. He cannot hold a pencil well, even to this day. His handwriting is terrible. He still has pains running up his arms if he has to write very much, and his hands fall asleep and he has to shake them out. Shooting a basketball is almost impossible. To gain the power to shoot, he throws way offside, causing him to fall. His general weakness in his arms is permanent, but we hope, with weight training, there might be some improvement. He has compensated by becoming very keyboard-oriented. He does all of his school work on the computer, which was recommended by the neuropsych department.

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OT was very helpful for Gina. She began it at the hospital and continued when she entered school. She had OT for 5 years or so. The therapist helped her learn to write, and OT improved her spatial awareness and hand/eye coordination (piano lessons helped with this too). She still cannot snap her fingers, but this year at camp she climbed to the top of the climbing tower (quite a feat for anyone), and when she went to YMCA ^® camp last week she was thrilled to complete the high ropes course.

I don’t believe she would be where she is today without OT. Intervention is necessary and important, and the earlier the better.