February Newsletter

Childhood Cancer Awareness Month

My 10 year old son has a good friend and hockey mate that was diagnosed with B Cell Lymphoblastic Lymphoma in October 2017.  His treatment is approximately a 2.5 year program and his family recently celebrated 365 days left of dealing with this horrible disease.  If all goes well, this means: 2,892 more chemo pills, 12 more infusions in his port, and 4 more spinal taps left for him. This doesn’t include all of the other things that will need to be treated such as a broken bone due to the weak bones from all of these drugs (he’s had 2), pneumonia due to a suppressed immune system or other viruses his body can’t fight off.

The bravery and wisdom I’ve seen from this little being who’s only been here for 10 short years surpasses most adults I know.  One of the things I have learned from them is that:

• 1 in 3 children who survive 5 years past diagnosis will die at a young age due to side effects from the drugs they had to take that put them into remission.
• By the time they turn 45, more than 95% of childhood cancer survivors will have a chronic health problem and 80% will have severe or life-threatening conditions.
• 1 out of 285 children will be diagnosed with cancer before the age 19.
• There has only ever been 4 FDA approved drugs specifically developed to treat children’s cancers.  All other drugs were developed for adults.
• Only three new drugs have been developed for the treatment of childhood cancers in the past 45 years.
• If they are fortunate enough to beat cancer, they will most likely have watched a friend they made along the way not be as lucky. 

What Can You Do To Help?

• Donate blood or plasma.  Chemotherapy and radiation can damage the cells in the bone marrow that manufacture platelets and blood so it is almost a given they will need a transfusion at one point or another.  Blood banks rely on the goodness of others to donate for reasons such as this.
• Support organizations or events like St. Baldrick’s, Alex’s Lemonade Stand or Coins4CURE
• Start a fundraiser such as a 5k run or Jump-A-Thon to raise money and awareness
• Volunteer at a Children’s Hospital or Treatment Center.
• Instead of your child receiving birthday gifts, have the party guests bring an item to be donated to the cancer unit at your local hospital.

Resources For Those Who Have Childhood Cancer

• An organization called Along Comes Hope has multiple resources for summer camps, financial assistance, medication assistance, online resources & websites, scholarships, school issues, wigs and other items such as wishes.  You can access it here: https://drive.google.com/file/d/12dv0zkBaUQ-DDjdZnYKFVcZxoQFwpzaH/view?fbclid=IwAR3M1WxhXbRNnJRoujo9APl8iOqApBWEE0T0DqiK1H4c00vJ-2edxL8WjW8.  
• Children with cancer want to live the life a normal child does, however, this is not always possible.  Going to a summer camp with others in the same boat allow them an opportunity to do this:  Here is another resource for summer camps: http://www.ped-onc.org/cfissues/camps.html
• Coping With Cancer magazine has a Wings For Life section that offers resources for medical air travel for those who need to travel to be treated.  You can access it here: https://www.copingmag.com/coping-with-cancer/wings-for-life?fbclid=IwAR0s1l8R5RTP6n3pCUPWJUVO9GNaGVSiVWFK4oexdk9yMx9lU_uU65emhoQ
• The financial burden of cancer can often bankrupt a family.  Parents need to miss work, possibly travel for treatment, pay for child care for other siblings at home when the parents are at the hospital, and pay out of pocket for treatments not available to them can all be additional costs.  There are many programs and resources out there to help those in need of additional assistance.  Here are a couple:  https://www.pogo.ca/programs-support/financial-assistance/ and http://www.sickkids.ca/patient-family-resources/child-family-centred-care/pro-bono-law/Pro-Bono-Law.html

What Do Patients Want?

What exactly do patients want?  While the list might be long, here are a few of the top things that come to mind:

Communication – Patients go to a doctor for a problem and hopefully a solution.  Sometimes, we don’t know or understand what our body is doing and have a multitude of symptoms.  We want our doctor to listen attentively to us so our needs are heard and understood.  We rely on our doctors to have strong communication skills.  Conveying medical information to a non-medical person can be challenging.  To have it explained in a manner you can understand with clear and accurate instructions creates an easier and comfortable relationship.

Compassion – Although there are a handful of doctors who don’t have the strongest ‘bed side manner’, the majority of them do.  They go into their profession to help others and we expect compassion and understanding when we see them.  Patients want to be treated as a person and not a disease or number.  The doctors ability to express empathy gives the patient the security in knowing their best interests are being served.  

Trust – In any situation, trust is normally earned and the same would apply to your relationship with a doctor.  Patients are more likely to follow through with a doctors recommendations when they feel a connection to the doctor, which can be assumed as trust in them.  At times we need to request respect for our own thoughts and judgements.  A doctor that will allow this and take that into consideration can create a bond of trust between both parties.  We also want trust in knowing that our information will be kept private and protected, adhering to privacy rights. 

Transparency – Knowledge is power.  We’ve heard this statement over and over again.  Being given the good, the bad and the ugly with open transparency for our situation can provide us with information to make an informed decision.  Doctors do have limits and guidelines they must work within just like any profession and they are not miracle workers.  Just because we want a certain result doesn’t mean they can produce it but if we have all of the facts, we can be assured the doctor is providing the right course of action.  

Quick access – Patients want to be able to see their doctor in a reasonable amount of time. With the shortage of doctors in Canada, this can sometimes be challenging.  Referrals to specialists can be months long and even getting an appointment with a GP for an acute illness may not happen right away.  We want our pain to be short lived and to feel better as soon as possible.  Waiting for appointments, diagnosis tests such as a MRI and surgery need to be done in a timely manner.  Convenience is almost demanded in today’s world as well.  Virtual visits (ie. telemedicine) and in house employee access to a medical program are options that are becoming more popular to accommodate this.

Their Time – Time is a valuable commodity.  When we see a doctor, we want our appointment time honored and their full attention. We want all of our questions answered and to not be rushed or treated like a number.  Doctors sometimes have to dedicate more focus than expected to another patient or be pulled away for an emergency.  This can cause a delay in keeping to your scheduled appointment.  Most doctors can appreciate the value of your time and are not creating delays on purpose.  Keeping this in mind and knowing you could be that person needing additional time on another given day will help long delays seem more bearable.