Childhood Leukemia: A Practical Handbook (Pediatric Oncology)

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Since I wanted to believe, needed to believe that I had emerged unscathed, I blithely went along with this version of reality. Trying to make light of cancer by calling one or another of the curable cancers a "good" cancer does a disservice to me and my physicians. It disarms us in the face of potential late effects and makes us less effective in monitoring our health. According to Webster's New Collegiate Dictionary, transition is a "passage from one state, stage, place, or subject to another. The definition also fits because "place" changes as the adolescent moves from pediatric healthcare overseen by parents to self-designed and self-monitored adult healthcare.

These periods of change can evoke anxiety and require a period of adjustment. For survivors, transitions involve medical, psychological, social, and educational changes. People cope better with transitions if a period of planning occurs before the change happens. The transition from cancer patient to survivor should be acknowledged by all healthcare providers, and the psychosocial and educational aspects of survival should be addressed. For instance, if a teen's medical care shifts from a pediatric clinic to an adult clinic without discussions about his understanding of his disease, he may still have only the information that was given to him when first diagnosed as a young child.

Dealing with birthdays, anniversaries and holidays after losing a child to cancer - CLIC Sargent

This is hardly the amount or depth of information needed by a survivor entering adulthood who will have to advocate for his own healthcare and make wise lifestyle choices. The last day of treatment is a time for both celebration and fear. The protocol schedules and frequent appointments provided reassurance and structure. While most families are thrilled that the days of pills and procedures have ended, some fear a future without powerful medicines to keep the disease away.

Concerns about relapse are an almost universal response, and family members often feel vulnerable after active treatment ends. Many parents and survivors describe ending treatment as almost as wrenching an experience as diagnosis. Families begin to experience the gamut of emotions — from elation to terror — months before the final day. I had a lot of anticipatory worry — it started about 6 months before ending treatment.

By the last day of treatment I had been worrying for months, so it was just a relief to quit. I expected to feel a profound sense of relief when treatment ended. The 6 months prior to ending treatment I felt almost euphoric. But when she was finally finished, I began to be unexpectedly fearful. I just started to worry. I didn't really relax until she was a year off treatment.


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Now weeks go by without me thinking of relapse, although I still think of the years of treatment frequently. We were thrilled when treatment ended.

During and after childhood cancer | Cancer Council Victoria

I knew many people who felt that celebrating would jinx them; they just didn't feel safe. Well, I felt that we had won a big battle — getting through treatment — and we were going to celebrate that. If, heaven forbid, in the future we had another battle to fight, we'd deal with it. But on the last day of treatment, we were delighted. Survivors and their parents should anticipate that after months or years spent going through the rigors of treatment, they will have lost the feeling of a "normal" life. They may experience relapse scares, and they may need to call the doctor to describe the symptoms and be reassured.

Several months after my son ended treatment, I was driving down the street, and I started to worry that he seemed excessively tired lately. I started to feel my throat constricting, and tears sprang to my eyes. I had to pull over because I literally couldn't breathe. I had to force myself to calm down, breathe slowly, and realize that I was just having a normal attack of being petrified that he would relapse. With diagnosis came the awareness that life can be cruel and unpredictable. Because many parents and children feel that treatment is keeping the cancer away, the end of treatment sometimes leaves families feeling exposed and vulnerable.

When treatment ends, survivors and their parents must find ways to live with uncertainty, to find a balance between hope and reasonable worry. People forget sometimes that the toughest part of being off treatment is being off treatment! You aren't doing anything active to nail any microscopic tumor — no drugs, no zaps, no cutting, just sitting.


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And that can be terrifying. I was told nothing about late effects when I was treated for Hodgkin's as a teen. The good part of that was that I had no excess anxiety.

Long-Term and Late Effects

I see people come out of treatment now and they go from mentally fighting the disease to being very fearful and anxious. That's a very difficult thing. But then my ignorance caused a lot of other suffering when I tried to get good care for my late effects. Finding a balance is a very complex thing, and the way the doctor handles it from the beginning sets the tone. Doctors and nurses can help with the transition to survivorship by having a meeting with the family before the end of treatment. You may have to suggest the meeting to your child's medical team, although at many centers these meetings are routine.

Many families make a separate appointment for this discussion so that it will not be on the actual last day of treatment. The appointment should be long enough to allow a lengthy conversation. The ACCR is therefore a rich source of information on childhood cancer, containing a complete register of more than 20, cases of childhood cancer diagnosed in Australia since Collection of a population-based, nationally consistent childhood cancer clinical data set is essential for national reporting, international benchmarking and clinical epidemiologic research.

The ACCR provides current, accurate and accessible information about incidence, mortality and survival — information that is vital for addressing the future needs of children with cancer. Most importantly, research produced by the ACCR is of benefit to clinicians, paediatric cancer patients and their families.

Our continued investment into childhood cancer research plays a significant role in saving lives and beating childhood cancer. A range of information on childhood cancer incidence, survival and mortality has been produced using data collected by the Australian Childhood Cancer Registry and is freely available to anyone with an interest or involvement in childhood cancers at the following links. This work was supported through a national initiative by Cancer Australia as part of an approach to improving national cancer data on stage, treatment and recurrence.

Along with excellent survival rates, achieving optimal quality of life is important. Close follow-up of patients post treatment for potential problems allows cancer survivors to enjoy full and active lives. Cancer Survivor Link Your link to care after cancer.

Pediatric Oncology Resource Center Resources and information for parents of children with cancer. Childhood Cancer Canada Foundation The country's leading Foundation dedicated entirely to the fight against childhood cancer. Live Strong Foundation We look at the experiences of the cancer community, find problems and develop solutions.

Then we roll them out to help more people in more situations. People against Childhood Cancer Advocacy community on a mission to raise awareness of childhood cancer. When you find out your child has a cancer, it may be hard to know what resources are helpful. You might also be looking for support from other parents or professionals.

Health information online can be helpful, but may bring up more questions. There is a lot information to take in. If you are feeling overwhelmed, take a break. School Support. All Rights Reserved. More than youth.

A Really PRACTICAL HANDBOOK of Children’s Palliative Care

One common goal. Theresa Newlove is working to improve the patient and family experience Is it typical teen moodiness or depression?


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    How does the treatment work? What are the side effects?