Category: Kids and Grands

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Kids and Grands

Kids Get Cancer, Too!

Photo credit to Anna Risinger
Photo credit to Anna Risinger

On November 28, 2013, the term Black Friday took on a whole new meaning for my family. With Thanksgiving over and Christmas just weeks away, my daughter’s household woke up with happy thoughts of decorating the house, baking cookies, and generally beginning to feel the spirit of the season. As the day was only getting underway, my son-in-law Shane noticed a bump just above my granddaughter Kayla’s left clavicle. Probably nothing, they thought, but it couldn’t hurt to have the pediatrician take a peek just to confirm that it was “nothing” and they could get back to ornaments and cookies. By the end of that day, however, my daughter Lisa was having her first conversation with a pediatric oncologist at Seattle Children’s Hospital.

Just before Christmas, the diagnosis was complete: Kayla had high risk, stage 4 neuroblastoma. She would spend the next thirteen months on a treatment schedule which consisted of three phases and included chemotherapy, surgery to remove the mass, radiation, bone marrow transplant, and immunotherapy. All of this would take place at Seattle Children’s under the supervision of Dr. Julie Park, a leading neuroblastoma specialist.

Kayla had just had her second birthday in September and was a happy toddler with an eight-month-old baby brother. The last thing on anyone’s mind at that time was spending the next thirteen months in cancer treatment. But on that very black Friday, my family became a “cancer family,” and our sense of “normal” got a major reboot. Lisa’s family life was no longer structured around play dates and trips to the park; the new normal was structured around hospital stays, phases of the treatment schedule, testing and scan days, and the daily possibility of medical emergencies. For the grandparents, the new normal was a tag-team plan to help care for the household and especially the baby. For Roan, little brother, the new normal was days at a time without seeing his mommy because she had to be at the hospital with his sister. And for all of us, the new normal meant looking into the ugly, terrifying face of death, not knowing how this awful ordeal would end.

For those of you who don’t know our story, our precious Kayla is still very much alive and looking forward to celebrating her fifth birthday [updated: 8th birthday] this month. She has suffered losses as a result of her life-saving treatment, some of which we won’t know until she’s older; but we’re grateful every day that our world is still lighted by her smile, made musical by her laugh, and energized by her creativity and zest for life.

I’m writing this article because September is Childhood Cancer Awareness Month; and I think there are lots of people who, like me, thought cancer a rare occurrence among children. Middle-aged and older people get cancer, but kids not so much. Right? No, that’s wrong. In reality, cancer is the number-one cause of death by disease in children past infancy in the United States (National Cancer Institute). Many people assume any childhood cancer is leukemia; but although leukemia is the most common type, other common types are brain and other central nervous system tumors, lymphoma, rhabdomyosarcoma, neuroblastoma, Wilms tumor, bone cancer, gonadal (testicular and ovarian) cancers, and germ cell tumors (National Cancer Institute). In addition to these, there’s a list of more rare types of childhood cancer. A young friend who was diagnosed at the same time Kayla was had osteosarcoma in the humerus of his right arm. All together, there are 16 major types and over 100 subtypes (Cure Childhood Cancer).

Here are a few more facts I think everyone should know about the occurrence of childhood cancer:

  • The incidence of childhood cancer is on the increase, averaging 0.6% increase per year since mid 1970’s resulting in an overall increase of 24% over the last 40 years (Coalition against Childhood Cancer, CAC2).
  • One in 285 children were diagnosed with cancer in 2014 (CAC2).
  • 16,000 U. S. children are diagnosed every year. Specifically, 43 children per day or 15,780 children per year were expected to be diagnosed with cancer in 2014 (10,450 ages 0 to 14, and 5,330 ages 15 to 19) (CAC2).
  • More than 40,000 children undergo treatment every year (CAC2).
  • The average age at diagnosis is 6, compared to the average age of 66 for adult cancer diagnosis (CAC2).

Statistics vary because researchers use different definitions of “child.” The above statistics apply to people from birth through 19 years of age.

And these are a few of the sobering facts about the prognoses for children who are diagnosed:

  • More children die of cancer every year than adults died on 9/11 (Kids v Cancer).
  • Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined (Kids v Cancer).
  • The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life (Kids v Cancer).
  • The average 5-year survival rate for childhood cancers when considered as a whole is 83% (meaning an overall 17% die) (The Truth 365).
  • Survival rates can range from almost 0% for cancers such as DIPG, a type of brain cancer, to as high as 90% for the most common type of childhood cancer known as Acute Lymphoma Leukemia (ALL) (The Truth 365).
  • The average survival rate not including children with ALL is 80% (The Truth 365).
  • In 2010 there were 379,112 childhood cancer survivors in the United States (The Truth 365).
  • Approximately 1 in 530 young adults between the ages of
 20 years and 39 years is a survivor of childhood cancers (The Truth 365).
  • More than 95% of childhood cancer survivors will have a significant health-related issue by the time they are 45 years of age; these health-related issues are side effects of either the cancer or more commonly, the result of its treatment. One third will suffer severe and chronic side effects; one third will suffer moderate to severe health problems; and one third will suffer slight to moderate side effects (The Truth 365).
  • About 35% of children diagnosed with cancer will die within 30 years of diagnosis (The Truth 365).
  • On average, about 17% of children die within 5 years of diagnosis. Among those children that survive to five years from diagnosis, 18% will die within 30 years of diagnosis (The Truth 365).
  • Those that survive the five years have an eight times greater mortality rate due to the increased risk of liver and heart disease and increased risk for recurrence of the original cancer or of a secondary cancer (The Truth 365).
  • The death of a child is one of the most traumatic events a family might face (Kids v Cancer).
  • The average cost of a stay in a hospital for a child with cancer is $40,000 per stay (The Truth 365).
  • On average, pediatric hospitalizations for cancer cost almost five times as much as hospitalizations for other pediatric conditions (The Truth 365).
  • Families who have lost children are often financially and emotionally depleted (Kids v Cancer).

There’s much more information available, but this gives you a good primer on the subject.* (List of links below the article)

Finally, here are a few other disturbing statistics:

  • For 2014, the National Cancer Institute (NCI) budget was $4.9 billion. It was anticipated that childhood cancer would receive 4% of that sum or $195 million (The Truth 365).
  • Prostate cancer (patient average age at diagnosis, 66 years), receives more research funding from NCI than all childhood cancers (patient average age at diagnosis, 6 years) (The Truth 365).
  • There are 71 potential life years lost on average when a child dies of cancer compared to 17 potential life years lost for adults (The Truth 365).

Only 4% of the research funding available is designated specifically for childhood cancer! That needs to change. Now. I’m all in favor of saving the hoo-ha’s and the tata’s, but our children also deserve at least a fair chance at those extra 71 years!

It’s difficult to find anything positive about being a cancer family, but our family was fortunate in many ways. My daughter and son-in-law live 20 minutes from one of the leading children’s hospitals in the country, so they were able to be in their own home during treatment except the 135 in-patient days (this is the total of individual days spread out over 13 months). Many families have to travel to be near their treatment center and be out of their homes for months at a time. My son-in-law has excellent health insurance through the company he works for, but we all know that many families face financial hardship on top of the physical and emotional toll because they have no insurance or inadequate insurance. Kayla has grandparents who either are retired or have flexible work arrangements so that we were able to be in Seattle as long as we were needed. Lisa and Shane had made the decision to be a one-income family (his) when Kayla was born, so they had already made the necessary budget adjustments and didn’t have to deal with those concerns at the same time they were facing Lisa’s needing to live at the hospital with Kayla for 135 days.

Childhood cancer is a nasty, ugly thing, and it affects the whole family and community. My family and I will be forever indebted to Team Kayla who saw us through the darkest days in ways too numerous to list here. Thank you again!!!

If this information is new to you, learn more, and then use your influence to continue building awareness and to increase research funding. Check out the Make-a-Wish Foundation and all of the other organizations that support families devastated by this horrible disease. Visit your local children’s hospital if you have one. Check out Mikayla Vickers’s Facebook page “Packages of Hope.” Make September the beginning but not the end of your childhood cancer awareness.

Knowledge is power! And now you know.

*Find more information here:

https://www.thetruth365.org/cancer-facts/

http://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet

http://www.kidsvcancer.org/facts/

http://www.curechildhoodcancer.org/about-cure/childhood-cancer-facts/

Categories
Kids and Grands

Why You Should Unfriend Your Children on Social Media

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When I was growing up, we communicated by personal visits, phone calls, and letters. Those were pretty much the only means available. And for friends and family who lived in other states, letters were preferred to phone calls, because phone companies charged extra—a lot extra—for long distance phone conversations. Therefore, those were usually saved for special occasions when a little splurge could be justified. These days, hardly anyone writes paper letters; very few friends dare knock on the door unannounced; and phone calls, though no longer costing premiums for distance, have been somewhat supplanted by the plethora of other choices available in our age of electronic communication: email, text messages, face time, Skype, social media, and probably a few others I’ve forgotten or haven’t yet noticed.

Back when there was one phone line for the entire household, there were unwritten rules about phone courtesy: except in emergency, don’t call before 9 a.m. or after 9 p.m.; be polite when someone’s parent answers the phone; wait your turn patiently to use the family phone line or the neighborhood party line. School teachers taught us how to write “proper” letters and gave us practice assignments. It seems to me technology has developed so rapidly that our manners have not kept stride, and we find ourselves in a free-for-all period when no one quite knows what is and is not socially acceptable communication etiquette. My own recent experience has prompted me to begin this conversation by proposing a few elementary rules, just as a starting point. Others are invited to add to my list, as everyone’s peace of mind is at stake here.

Since electronic communication is by its very nature impersonal, there is certain information no one wants to receive by text message or by reading the news on social media. Imagine your significant other texting you that your two-year relationship which you thought would last forever is over or reading on Facebook that your aunt just died or your pastor has run off with the church organist. Or imagine on your leisurely scroll through Facebook seeing photos which your daughter has posted, no doubt discovered on Pinterest, of things she’s considering doing to her hair. That hair which you initially grew inside your own body! But more on that later.

Certain information must be transmitted gently, with great care for the emotional impact it will have on the receiver. Certain things should be said in person, with perhaps flowers and a nice bottle of wine—not just blurted out in a text message or a tweet. If in-person communication is impractical or impossible, a gentle email could work, with a message line warning the receiver to grab the smelling salts and be prepared. An email allows for “wading” room. Text messaging, because of its brevity, requires jumping straight into the deep end, whereas emails can be unlimited length; therefore, the writer can begin at the shallow end and wade gradually toward the big shock. You know: first comes the cordial greeting, then the “I have something to tell you,” then “It’s very sad news,” and so on until you finally reveal the main point. It’s all about preparation.

Consider these three guidelines as a starter list, and think of what might be added.

  1. Don’t break up or deliver really shocking news by text message.

The text message is a great tool for sending quick questions, arranging meeting places, updating friends on your progress toward arriving at a meeting place. It’s a great way to send grandparents almost real-time photos of their out-of-state grandkids. It’s not really the most sensitive way to end a relationship. Seriously! Put yourself on the receiving end of this:

“sry to say, i dont want to go out with u n e more.” OR

“its over between us. Sry. Have a nice day. Bye.” OR

“thot u shd no im seeing someone else. pls send back my cd’s.”

Any news which requires any level of sensitivity in the delivery should not be sent via text, especially if the receiver is one of your parents. Pregnancy, coming out, being fired, thinking of leaving your spouse. Trust me, these are things parents REALLY do not want to read when they’re expecting a cooking question or another cute photo of the grands.

“hey mom! just took a pregnancy test and ur gonna be a grandma!”

“dad i shd have told u this years ago. im gay.”

Do you see the problems here? This news requires a level of sensitivity simply not available in the text message format. And a string of emojis doesn’t really count as sensitivity.

2. Regardless of the medium, don’t express important information in a subordinate clause.

For example, “When the pastor and the organist left town, . . .” This is a subordinate clause, and it’s going to take your reader a while to even notice what comes after the comma because they’re too busy absorbing this casual announcement of some pretty shocking info. The fact that it’s in a subordinate clause suggests this is already common knowledge, and the real news is coming next. But to those who hadn’t heard this part of it, THIS IS the real news. Imagine the questions this raises: “What the . . . ???” “WHEN???” And the all-important question, “WHY am I ALWAYS the last to know???” Imagine reading these subordinate clauses unaware:

“When I first found out I was pregnant,”

“Right after I got fired,”

“Just before the accident,”

“When I started dating my significant other’s BFF,”

This information should first be presented in a declarative main clause and should also be included in the list of things not to say via text message.

  1. Alert all people with personal interest in your news BEFORE posting it on social media!

For most of us, our time on Facebook, Twitter, or whatever is a welcome respite from the busy-ness of the day. We like to sit with a cup of coffee or glass of wine (in the evening) and scroll through the posts of the day. We smile at the funny memes. We enjoy the vacation photos and the kid and grandkid photos. Even the ubiquitous selfies have become so commonplace that we accept them as part of the social media experience. We pause to reflect and perhaps comment on the rare thought-provoking post. We smile and nod in agreement with those who share our political leanings. We cringe at the political statements of some other friends but choose to scroll quickly by so as to avoid spoiling these brief moments of pleasure and to get past the unflattering comments we just muttered to ourselves about “those” friends. We take our turns at Words with Friends or other game of choice. This mostly peaceful experience is NOT the time or the place we want to learn disturbing information for which we’ve not been previously prepared. This is also where those subordinate clauses can be especially problematic.

Then one day IT happens! You’re having your afternoon Facebook scroll, and you see some photos of hairstyles and then notice that your daughter is the one who has posted these special photos. All of them, which as I said before she no doubt discovered on Pinterest (screw you, PINterest!!!), show various patterns which can be shaved into one’s hair. And your daughter is asking her FRIENDS what they think of the idea because she’s thinking of getting one of these patterns shaved into a section of HER hair! And she’s asking her FRIENDS what they think! Her FRIENDS, NOT her MO-THER! And you’re wondering, which one of those friends carried you in her body for nine long, uncomfortable months while those hair follicles were being formed and when little hairs began to grow? Which one of those friends gave up caffeine—her ONE and ONLY drug—just to be sure your hair follicles and the rest of your body had a peaceful, non-jittery development period? Which one of those friends was unable to eat some of her other favorite foods without puking, grew to the size of a small elephant, walked like a drunk duck for a couple of months, wore clothes created by the local tent maker, had ankles the size of China, had to use five pillows to create a moderately comfortable sleep position, and carries the lifelong stretch marks and flaccid ab skin? Hmmmm? Oh, and who suffered hours of pain to bring you and those precious hair follicles into this world? And you want to know what your FRIENDS think?!

After your very subtle response to the Facebook post–“WHAT???????”–then comes the phone call. In her sweetest voice she says, “Hey, Mama. You saw my Facebook post. What do you think?” Oh, sure, NOW you ask what I think! After being sweetly reassured that this is going to be relatively subtle and will involve no bald spots or weird colors, your blood pressure resumes its normal level, and you remember a few of the weird styles you tried when you were young and adventuresome. Not that any of that matters now, because THAT was different!

Then after the deed is done, you get the phone call where you find out it was the book you sent her that bolstered her courage. That damned book! You recently read a book about boundaries and thought it was soooooo awesome that your daughter must also have a copy, so you went back to Amazon and ordered a copy shipped to her house. That’s Mother of the Year stuff right there! And what is your trophy for this exceptional act of outstanding motherhood? Of course, you should have seen it coming; after all, every parent knows from the time your child begins speaking in full sentences that anything you say can and WILL come back to bite you in the butt. However, walking into a hair salon thinking, “My mom’s going to hate this, and that’s not my problem” is NOT what your daughter was supposed to get from the book about boundaries! In fact, maybe you need to call Amazon because they must have sent her a different edition than the one you read. You’d have remembered if that was in your edition. (Screw you, too, AMazon!)

And that brings me to the title of this little piece: Unfriend your children on social media. Then they’ll be forced to call and break these little bits of news gently and sensitively. OR you won’t find out at all until the current whim has passed. And sometimes ignorance actually is bliss.