Thursday, April 18, 2013

Guide For a Parent of a Child with Cancer (or other serious illness)

We have friends of a friend whose little boy was just diagnosed with leukemia  and is getting treated at the same hospital as Spencer.  Our mutual friends have been trying to arrange for us to go meet with them and give them a little perspective as they embark on this new journey in their lives.  This blog post is dedicated to them and to any other parents of sick children who have found their way to this  blog.  I am sorry for those of you have need to read this blogpost, but I hope in it you will find a  little encouragement and helpful advice for the beginning of your journey.

 Click here to read about the first few days after our 16-year-old son was diagnosed with leukemia (AML).  

1.  Do not panic.  Yes, having a child with cancer (or other serious illness) means that you're embarking on one of the most challenging roads that life can bring, but take a deep breath.  You can do this.  You will have crappy days along the way (probably many of them), but panicking is not productive and witnessing you in that state can actually hinder your child's ability to cope.   They're already frightened and sick and they need as much calm and reassurance as you can muster.

2.  How do you not panic?  My simple piece of advice is to take this journey ONE DAY AT A TIME!!!!  There's no quicker way to incite panic than to focus your thoughts on the big unknown future.  All you can do is take what each day brings and deal with it hour by hour.  Minute by minute.

3.  Seek information.   Your doctors and nurses are the best source of information, since they know your child's case, but inevitably you will probably feel drawn to look online for information as well.     Keep in mind while you research that each and every child responds differently to treatment and that some websites are more accurate than others.    Try to focus your search on reputable sites.

4.     Let people help you.    It's hard for  independent people to suddenly rely on others to help them in every day tasks, but I can say with surety that the people around you NEED to help you as much as you need their help.   Friends and loved ones of a sick child often feel distressed and helpless (sometimes more than you realize) and you allowing them to help in some way can bless their lives as much as they bless yours.  

5.   Find a way to keep people updated.  How you do this can vary depending on your personality, but having a place for people to go for updates is hugely important!  People want to know what's going on and often just simply want to know what specifically they can pray for.   The burden on you to field all of the concerned friends' and family's inquiries will be much greater if you do not have a go-to source for people to look for updates. Most people use either Facebook, a go-to person, CaringBridge, or a blog.  For me, this blog became an outlet to maintain my sanity as much as it was a way to communicate information to others.

6.    Don't be afraid to ask the doctors and nurses lots of questions and certainly speak up if something doesn't seem right.   We caught one big error in Spencer's stay when he was in the sedation suite for a procedure and  they had his weight listed at several kilograms higher than it actually was--something that could have meant that they administered too much anesthesia for his actual weight.  Because I had written his weight down in our notebook that very morning, I knew that it was inaccurate and I was able to correct them.   Keeping yourself informed with the details  of your child's care (without driving yourself crazy) will help you to be the best advocate you can be.

7.  Trust and respect the doctors and nurses.  Doctors and nurses are not perfect or infallible, but they are trained experts in your child's disease and when you treat them politely and respectfully, you are making it easier for them to give your child the best care they can.  This does not negate my #6 and certainly does not mean that you should never question them or ask them to clarify things, but if you are constantly second guessing them and treating them poorly, you are increasing your own stress level, making it a more negative experience for your child, and risk being an obstacle to your child receiving the best care possible.  If there is a true personality conflict with a specific doctor or nurse, then you may want to consider requesting a different doctor/nurse to provide the care, but if you find yourself having issues with most of the doctors or nurse, you may want to consider that the problem is in your attitude and not in them.  

8.  Don't listen to the naysayers.  People often feel lost when they talk with someone in a difficult situation and can inadvertently say hurtful or frightening things without realizing it.    Don't take it personally and don't pay attention to them!   Most likely it was just a thoughtless remark, but if  it becomes a regular occurrence you may need to avoid spending time with the Debbie Downer.  You need positivity and support, not someone to tell you horror stories.

9.  Get a binder and a three hole-punch to organize your medical bills and insurance statements.  This is probably common sense for most people, but being a bit naturally disorganized this is something that someone had to tell me.   File insurance statements and bills separately and then staple them together when they match up.

10.  Look for the blessings.  There is nothing in the world like a sick child to bring out the best in people.  Look for the positive and you will see it.  Look for the healing and the miracles...they are there.  Friends, old and new, will come together to support you in ways that are beyond your comprehension.    Embrace the blessings and no matter the outcome of your journey, you and your child will be the richer for having lived through it.


 If you are a friend or loved one of someone who has a sick child, then I recommend also reading 10 Commandments of Helping a Friend through a Hard Time.   


jcsamom said...

I can't speak for any other diseases, but this is SPOT ON for type 1 diabetes. Great post!

Mika said...

I had a friend who always said that we needed to change the title to the hymn " I need thee every hour" to "I need thee every minute". Especially true during these type of trials.

Holly said...

Oh Laura, this brought tears to my eyes. I hope you all are doing well. Miss you all and the DC area.


The McArthur Family said...

Thank you, Lara, for sharing. I love this! You and your family dealt with the immense challenge of Spencer's illness with grace, composure, and faith. I know I wouldn't have done so well were I in your shoes. Your capacity to cope and triumph has so much to do with who you were long before Spencer got sick and all those good qualities seemed to only be magnified in you during it all. Thank you for your example and your wisdom.

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