Will My Child Be Able to Live a “Normal” Life After Treatment?

“I feel like we are in a transition now that my daughter has survived the disease and the intense treatment, I am beginning to worry about the future and whether or not she will be able to live a normal adult life.”

 

To bring hope and a sense of the future, it’s a good idea to work with your child to set up some short term goals that can be reasonably achieved. For example, for smaller children who have been “coddled” during treatment, give them small chores around the house that they are physically capable of. Then, build upon the success of those goals, step by step adding more responsibilities. It is vital to children to feel like an important part of the family team. Children who are hospitalized for long periods of time feel “left out” and desperately want to be part of the family again. The transition may be difficult, but remember, it is “for everyone’s good” that your child be as active as possible in daily family life.

 

You can also work on setting long term goals. The short term goals can serve as stepping stones to the long ones, helping to “rewire” your ability to be hopeful and future oriented, while slowly letting go of some of the fears of the recent or more distant past.

 

Every family has its own definition of what is normal and it varies greatly from family to family. For families like yours, with a seriously ill child, there is now a “new normal” that is very different from what it was prior to the diagnosis. You and your child will slowly redefine what normal is, now that your medical appointments may be infrequent, periodic and less regular.

 

Now you may be able to focus on slowly moving away from illness care and transitioning to age appropriate living, activities and challenges. The more you know about what the future may bring, the better prepared you will be to deal with it. You will each find new things to give you hope and be able to redefine what your hopes are for yourselves and each other.

 

Questions to ask your medical team

 

  •  What risks may be possible down the road (e.g., reproductive, hormonal, activity, heredity factors; cognitive and developmental factors etc.)?
  •  What legitimate problems may occur in the future that my child needs to be tested for)?
  •  What precautions can we take ahead of time?
  •  What are the signs to look that are related to these risks and what should I do if they do emerge?
  •  What are the real consequences from the treatments and therapies my child is undergoing ( long term, short term, cognitive and developmental)?
  •  What resources are available for these potential problems or limitations and where do I direct my calls?

 

Article contributed by Liz Sumner RN, BSN
Palliative Care Coordinator, The Elizabeth Hospice