As adult-children, sisters, brothers, and friends, chances are you may be asked to be surrogate for a loved one at some point in your life. If not, someone probably will ask you to weigh in on what to do when medicine can neither comfort nor cure.
What if the patient is a child? No one wants, especially a doctor trained to cure disease, to over-emphasize the fatal possibilities of childhood diagnoses. While in adults, it’s often said that cancer at least affords a goodbye, that is a hard thing to call an “advantage” for a child. Parents should not have to prepare to say goodbye and face the grim prospect of burying their child.
It’s no surprise that of all the doctors we stand in awe of are the pediatric specialists. Pediatric neurosurgeon, pediatric oncologist, pediatric radiologist, pediatric rheumatologist, pediatric palliative care doctor; they all carry our most precious in their hands.
Of all the clients in personal injuries, the ones who will break your hearts and have you speechless in admiration are the parents who help their children make it through hospice.
I know this is a tough issue; maybe the toughest of health issues. The only thing as bad as the thought of a child dying is the thought of a family feeling alone.
The occurrence we all hope to avoid. As this issue hits closer and closer to home for many families, what can be done?
The problem is significant. Over 250,000 children are diagnosed with terminal disease in the United States every year. Two-thirds of childhood cancer patients will have long lasting chronic conditions from treatment.
Medicine can be a cruel miracle. Cancer can often only be treated with substances that poison bodies. And when the poison will not work, cancer slowly invades the vital systems. Never a pleasant goodbye, and usually the end of the battle for families.
But despite this horror, childhood cancer research is tragically underfunded.
I asked the mother of a gravely ill child what I could do; what can we do?
Nothing, she told me. Keep talking about the problem. Keep demanding more money for funding and more resources for families.
But, I think there are things we can do. Real, tangible things to ease the suffering and angst families go through:
- Clean their house for their return from the hospital.
- Get them a gift certificate for DVD rentals.
- Buy CDs for the child undergoing chemotherapy. Perhaps even get them a Walkman or Discman if they do not have one. Or, an MP3 player.
- Puzzle books, reading books, and activity books, especially for the siblings. Many parents could use help with the other children.
- A night or day of babysitting.
- Take the parents a bag filled with things you think they might need, such as note cards, nail care products, laundry detergent, magazines, hand lotion, an array of items.
- Sit with the parent in the hospital on those long days when he or she is scared and bored and exhausted all at the same time. Bring a favorite food or a new magazine, and bring lots of news and stories to make them feel less left out of normal life.
- Hang out with the child so Mom or Dad can get a shower and something to eat.
- If the sick child is a teen, provide transportation so friends can come to the hospital. Staying in touch with friends and having their support is important.
- Enlist people to send cards and silly, fun things to the child and any of their brothers or sisters. A little fun and excitement go a long way toward alleviating pain and fear.
- Find out what the child likes (some kids collect stickers, beanie baby toys, cool hats, pins, etc.) and help start a collection if he or she doesn’t have one already. It will provide something fun to focus on and then people will know what to send or bring when they don’t know what else to do.
- Be the “fun” friend who shows up at the hospital room or at home with bubbles, silly string, joke books, Marx Brothers videos, rub-on tattoos, whatever. Life is scary enough right now without having all the grown-ups walk in with long faces!
We all want a positive frame of mind and happy thoughts in our head.
The parents fighting for their child’s life are doing it because they can do nothing else. The last thing they need are people telling them, “I just don’t know how you do it, I just couldn’t do it”. They do not need that; they are “doing it” because they have no choice.
Let go of the angst and show you care.