While the first emotions that parents will feel when their child has completed their cancer treatment are tremendous joy and relief, the event may also be a bit traumatic.
You may feel scared, as you and your child with cancer have suddenly come to the end of a journey of a couple of months or years, during which time you had the support of the hospital/clinic and a oncological team… now you are suddenly on your own…
This is completely normal as while one has to continue the fight, continue to be strong, doing what must be done, adrenaline takes over and keeps you going – once the fight is over the adrenaline subsides and fear and uncertainty can creep in.
Some parents have described this time as feeling like veterans who have just returned from war – exhausted and unsure of how to go forward…
For this reason, it is important that you think about the end of treatment before the day actually comes, so that you do not feel lost and all out at sea when it does.
Questions to Ask
Here are some questions to ask your oncologist as your child approaches this milestone
What Can I Expect From My Child’s Paediatrician?
Your child may have been in the care of an oncologist for as long as two years, and you will need guidance about transitioning back to your general Paediatrician. Find out what role each doctor will play now. Which one do you call when your child has health issues? Will your oncologist send your Paediatrician a treatment summary?
How Often Will My Child Have to Return for Annual Check-Ups, and What Survivorship Care is Recommended?
Find out if your cancer centre offers follow-up care for survivors. Follow-up of survivors of childhood cancer is recommended to improve detection of late-effects, and provide individuals with information and advice.
Childhood cancer survivors have special long-term healthcare needs. You may want to consider a survivorship program for your child that focuses on life after cancer. Coordination between your child’s cancer specialists and pediatrician is essential to provide the best care.
Survivors don’t necessarily need a cancer specialist for routine checkups and screening, but they do need to see doctors who understand their previous treatment and its risks. Your child should visit his or her paediatrician or primary care physician at least once a year for a complete physical exam and any additional needed tests.
Regular visits allow the doctor to:
- Assess the full effects of therapy
- Detect and treat disease recurrence
- Identify and manage long-term and late effects of treatment
What Psychosocial Support is Available to My Family Now?
You and your family may have had support from a social worker during your child’s treatment. Can you still call on this person? Are there resources in the community for you?
Should I Seek a Neuropsychological Evaluation?
Cancer treatment can affect your child’s cognitive, social, and emotional abilities. This evaluation tests these areas and compares your child’s scores with those of other children the same age. The evaluation is usually done through play, so your child will not feel “tested” in the traditional sense. For us, the test gave us a baseline to better advocate for our daughter and watch for any problems in the future.
Where Can I Find Resources to Manage Long-Term Effects?
Some hospitals offer a Transition to Survivorship notebook to educate the families about the possible long-term effects their child might experience. If your cancer centre does not provide this, ask your oncologist to recommend online resources.
How Can I Stay Connected?
Some families want to stay connected to the place that saved their child’s life or just to the fight for childhood cancer – this can be done in various ways. You could donate to the hospital; donate towards Child Cancer Research, or to a Child Cancer Organisation such as The Little Fighters Cancer Trust.
You could also volunteer; raise funds at your work or child’s school, or online via your interests such as running, cycling, knitting, sewing, baking, or whatever takes your fancy.
And whatever else you do or do not do; please raise Awareness of Childhood Cancer by sharing the Early Warning Signs of Childhood Cancer – remember, Early Diagnosis Saves Lives!