A lesson about true friends for those facing serious illnesses

True Friendship
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by Danielle Leach, MPA

“A true friend walks in when everyone else walks out.”

I read that on a magnet on my friend’s refrigerator recently and the simple power of that saying brought me to tears. I have learned that lesson of true friends since my son’s diagnosis of cancer in 2007.

Anyone who has faced a serious illness as a patient or a caregiver knows that you quickly learn who your friends are. They are the ones who are there, who listen instead of trying to fix things, who are present for you in any way you need them. Some people you love will disappoint and not rise to the occasion, and some people you never expected will be your biggest supporters.

It is hard not to resent people who are there in the crisis, and then leave once the immediate crisis is over. There are people who are not there for the long haul, for the good and the bad that a disease may bring. The initial drama draws everyone in, but sends them running afterward.

I have learned, especially when you are living a nightmare, that it takes a special person to stay with you throughout the crisis. A person who keeps checking in and knows the journey is not necessarily over once you are in remission, or when your loved one has passed away. When my son Mason had brain cancer, our family found our true friends. We were surprised by many who walked out, but also by how many true friends walked into our lives because of Mason’s illness. We have learned even after Mason’s death, even three years later, we continue to go through this process of discovering our true friends.

Some people are not capable of handling personal difficulties. We, as patients and caregivers, need to understand not everyone has the capacity or tools to handle a crisis of another. This knowledge does not make it any easier for us as we wade through process of dealing with disease.  As a director at Inspire, a company that creates and manages online patient support communities, I see regularly the comments of patients and caregivers who talk about friendships won and lost since diagnosis. Some are surprised and profoundly saddened by the lack of support from those expected to help the most. However, many happily note those friends, family, and even strangers who surprise them with support in a time of great need.

I recall reading about a Florida woman, whose teenage son was undergoing chemo, wrote that her friends avoided her upon learning about her son’s cancer diagnosis. “It’s almost like they were afraid they could catch it,” she said.

Another, a bladder cancer survivor from New Jersey, observed, “A lot of people walk out. . . a good 50% of my ‘pre-cancer’ friends I have never heard from again.” He went on to say, “In my case, I am lucky. I have all strong ones, having cut weak relations a long time ago. I keep only the cream of the crop.”

Sometimes finding others who are dealing with the same issues can be the most helpful strategy. You can often talk online more frankly and honestly with them than with some loved ones or friends. Dealing with an illness can be a lonely and scary process. Participating in support communities often help alleviate some of that loneliness. I have seen repeatedly how these connections are a powerful tool and establish strong personal friendships among members.

If you’re a patient or caregiver, look for the people who are true friends and hold those people close. Craft a strong support network–both in person and online. If you have a chance to do so, be the kind of true friend people are often searching for in their lives when they need it the most.

Danielle Leach is Director of Partnerships at Inspire and is founder of the Mason Leach Superstar Fund, in memory of her son, Mason, who died of pediatric medulloblastoma in 2007.

What is a concussion and what does it mean for a child?

by Christopher Johnson, MD

When it comes to football season,  it’s time to think about sports injuries. We frequently have children admitted to the PICU (or to what we call the intermediate or step-down unit) for observation, typically overnight, who have struck their head. They have had concussions. What is a concussion, and what does it mean for the child?

The term itself is centuries old, but even thirty-five years ago, when I was in training, the actual definition of concussion was a bit vague. What was usually meant was that the patient got hit on the head and either lost consciousness briefly or at least wasn’t quite himself for some period of time afterward. These days we’re more precise than that, but concussion is still a somewhat inexact term. This is mainly because of our ignorance of the subtleties of how the brain works.

The formal definition of concussion is a transient interruption in brain function. By implication, various scans of the brain, such as CT scans or MRI scans, show no abnormalities. Since all the imaging studies are normal, defining concussion is necessarily inexact. I’m sure one day we’ll have some kind of machine that detects the reason for the symptoms of concussion, but right now we don’t have such a thing — concussion is an entirely clinical diagnosis, meaning there’s specific no test for it.

There are several systems for grading concussions. Here’s how the American Academy of Neurology grades their severity:

Grade I: confusion, no loss of consciousness, symptoms last for < 15 minutes, has memory of the event
Grade II: confusion, may lose memory of the event but no loss of consciousness, symptoms last for > 15 minutes
Grade III: loss of consciousness and no memory of the event

The list of symptoms that can come from a concussion is a long one. Headache, dizziness, vomiting, and ringing in the ears are common. Various behavioral changes are also common, such as lethargy, difficulty concentrating, and irritability.

What are the effects of concussion on a child? Years ago we pooh-poohed the idea that mild concussions cause brain problems. For example, football players were sent right back into the game after experiencing a concussion. We now know that is dangerous. As a general rule, we don’t recommend any contact sports for at least a week (some authorities say longer) after all symptoms have cleared. This is because a repeat blow to the head, even a very mild one, can cause severe injury to a brain that has not fully recovered from the last injury.

What about long term effects of concussions? The overwhelming majority of children who suffer a concussion, especially a mild one, recover completely. But around a fifth or so of children who have had severe concussions continue to have problems many months afterward.

You can read much more about concussions at the federal Centers for Disease Control, the Mayo Clinic, and the respected Brain Trauma Foundation.

Christopher Johnson is a pediatric intensive care physician and author of Your Critically Ill Child: Life and Death Choices Parents Must Face, How to Talk to Your Child’s Doctor: A Handbook for Parents, and How Your Child Heals: An Inside Look At Common Childhood Ailments.  He blogs at his self-titled site, Christopher Johnson, MD.

Senator Klobuchar Urges FDA Action to Deal with ‘Unprecedented’ Shortages of Medicine

Senator Amy Klobuchar
Senator Amy Klobuchar

Senator Amy Klobuchar Will Introduce Legislation to Address Drug Shortages

EDINA, MN – Today, at Fairview Southdale Hospital in this Minneapolis suburb, U.S. Senator Amy Klobuchar urged the U.S. Food and Drug Administration (FDA) and the pharmaceutical industry to address a growing shortage of prescription medications, especially drugs for treating cancer.

Klobuchar said she will also introduce legislation in January to provide the FDA with new tools to deal with potential drug shortages.

Pharmacists and health care providers are reporting an “unprecedented” shortage of prescription drugs, especially for chemotherapy.  The FDA currently lists 150 “medically necessary” drugs that are in short supply, which is double the number from five years ago.

Earlier this month, Klobuchar sent a letter to FDA Commissioner Margaret Hamburg, requesting “immediate action” to ensure adequate supplies of essential drugs.

Klobuchar noted that medications in short supply include everything from morphine for pain relief to propofol for sedation to leucovrin for cancer.  There is also a serious shortage of pre-filled epinephrine syringes used in emergencies to treat heart attacks and allergic reactions

Experts cite a number of factors behind the shortages, including scarcity of some raw materials, manufacturing problems and unexpected demand.  Business decisions within the pharmaceutical industry are also a factor, such as cutting back on production of low-cost generic drugs in favor of more profitable brand-name drugs.

“Physicians, pharmacists and patients are currently among the last to know when an essential drug will no longer be available,” said Klobuchar.  “That’s not right.  There needs to be better coordination between the pharmaceutical industry, the FDA and health care providers so patients don’t lose access to the medications they depend on.”

Klobuchar said she plans to introduce legislation next month to provide the FDA with better tools to address potential drug shortages in the future.

Specifically, Klobuchar said her legislation would give the FDA the authority to require early notification from pharmaceutical companies when they decide to limit or discontinue production of prescription drugs.

Klobuchar also said that when there is an impending shortage of a drug, the FDA should have the authority to establish an expedited process to approve substitute treatments or the importation of safe, clinically-equivalent drugs from outside the United States.

“We want to respect the private market, but we also need to protect the public’s health,” said Klobuchar. “This is a common-sense solution.  It’s not too much to ask to have an early warning system so pharmacists and physicians can prepare in advance and ensure that patients continue to receive the best care possible.”