pediatric cancer


We are on a journey;
We walk it on our own.
People all around us,
Yet we remain alone.

Our journey is a long one;
It goes for years and years.
The road is hard and bumpy,
And we shed many tears.

Our journey is not over;
It never will be done;
Once you start this journey,
It never can be done.

No one thinks they’ll make this trek;
What person ever should?
But life is full of things that
You never thought you would.

Our journey is a sad one,
Yet with lots of laughs and smiles.
When you know that life is precious,
You make each inch last miles.

The simple things like cuddles;
The fiery, brotherly spat;
The normal grind of daily life;
We now so appreciate that.

Hands reach out to help us,
To make the way seem light.
But the road ahead is long
And continues day and night.

Just looking at your dear one,
And just knowing he is here.
If only there was something
That would take away that fear.

The fear that’s ever present
So you cannot sleep at night.
The fear that makes you tremble
So you have to hold him tight.

The cancer that invades him;
That cancer we so hate.
We pray to God to heal him,
To make cancer ‘vaporate.

This journey we are walking
On this long and lonely track
Is a lifetime journey
From which we can’t go back.

It was interesting to come across an old post from 3 years ago and realize how the social media environment has changed in such a short time.

Back then, the social media of choice for the Younger Techapillan was texting and instant messaging, with the occasional email; and for Techapilla, blogging, email and instant messaging. These days, the Younger Techapillan prefers to use texting, Skype and Facebook, including Facebook’s chat feature. Email has gone the way of the legendary dodo. Techapilla still clings desperately to email, messaging and blogging, but has added Facebook and Yammer into the mix. Twitter, I hear you ask? You gotta be dreaming!

There is still as great a reliance on social media as ever. It remains a lifesaver during long, long waits at appointments and the inevitable social isolation that comes with pediatric cancer.

Once more, a sudden hiatus.

In the Younger Techapillan’s cancer journey this past while, Techapilla has been constantly amazed at the depths to which some people will sink to attract traffic to their websites. The latest scam to trigger the Techapillan ire is the existence of “content mills”, which provide free content that can be copied and pasted into websites without acknowledgement of the content mill. Frequently, such content carries the byline of the fraudulent website owner.

As a web-savvy academic librarian, Techapilla is well aware of the existence of content mills and similiar sites, such as those that sell essays for assignments. This time, having noticed that Google Alerts was throwing up the same content for “osteosarcoma”, with exactly the same misspelt word, on an almost daily basis, Techapilla was inspired to do some further investigation.

Techapilla is not going to promote content mills or fraudulent websites, so no links provided. But here are the Techapillan findings –

  • 2970 Google hits for the misspelt phrase (“when doctors access osteoarthritis and osteoporosis”). This gets whittled to 43 when similiar results are omitted. Examination of these 43 results reveal that all articles obviously come from a single source
  • 335 Google hits for the corrected phrase ( “when doctors * osteoarthritis and osteoporosis”). This gets whittled to 63 when similiar results are omitted. Once again, examination reveals that all 63 articles have a common source. Note that this search should have yielded more than 2970 results, since it is a broader search than the first – presumably the difference is due to Google using a different algorithm for wildcard searches. This search also highlighted slight wording differences among the articles – either from editing, or running through a translator. Techapilla strongly suspects the original article was written in a foreign language and run through a translator, given the awkward language of most of the articles
  • 4 obvious content mill sites in the first 40 Google hits for the misspelt phrase
  • The majority of sites which had used the farmed article were ostensibly health sites
  • Quite a lot of “This site may harm your computer” links in the hits
  • Searches on slight rewordings of the misspelt phrase yielded additional hits, including the same article that had been cleaned up a bit more or rejigged to “fit” another disease (e.g. osteomyelitis).
  • Visiting a sampling of the sites revealed that while a few obviously tried to be legitmate health sites (shame about their lack of medical knowledge), most sites were fraudulent, with links on the site all leading to commercial sites (“affordable weddings”, “hot winter vacations”)
  • Techapilla is not a medical professional, but has learnt enough about osteosarcoma in the past year or two to confidently state that the article/s examined as part of this task are complete and utter junk

It would be an interesting exercise to trace back the original article, and to run one of the offspring through Turnitin. An exercise for another day.

In the meantime, some guidelines to help Techapillan readers evaluate the quality of information resources.

Techapilla’s back!

Been a while.

In the time it took to say 3 words, in regard to the Younger Techapillan – “it’s probably cancer” – the Techapillan world turned upside down.

A life filled with mundane worries, such as chauffering Young Techapillans to school and footy training, wondering what to cook for tea and how to keep Techapillan fans entertained, suddenly became filled with matters of life and death. What is osteosarcoma? Has it spread? Will the Younger Techapillan survive? Will he walk again?

So, life in turmoil, things changing from one hour to the next, and worried family and friends all keen to keep up with the news. Only sporadic access to computers in the first few weeks, so the Techapillan SMS-only phone bill scooted from $5/month to $126 in the first 2 weeks after diagnosis.

Months in hospital, isolated from family and friends, and technology and social media became a lifeline during the long year of treatment. Here’s how.

The Younger Techapillan’s main treating hospital offers wi-fi for patients, so web-based social media services were freely available there. Not so at the regional hospital, where the Younger Techapillan spent many weeks recovering from chemo after-effects. SMS/phone was the only means of outside communication there, so much frustration ensued from that.

Techapilla’s main communication method with family and friends was via an email list, but it soon became apparent that these emails weren’t reaching one very important group – the Younger Techapillan’s mates.

The Younger Techapillan’s main means of communication with his mates was via SMS and MSN, but he was often too sick to bother, which sometimes caused a lot of worry among the mates. After various failed strategies to keep the mates and family/friends more informed about what was happening, such as leveraging vacation emails and MSN’s “quick message” feature, Techapilla gave up and set up a blog to show the Younger Techapillan’s whereabouts at any point in time.

Techapilla, on the whole, did a pretty good job of keeping the blog up to date, although it was sometimes a day or two behind due to various medical emergencies. And Techapilla is pretty confident that it was the parents of the mates (as well as family and friends) rather than the mates themselves who made most use of the blog – the mates mostly preferred to rely on SMS and MSN.

While Techapilla choose to use a WordPress blog for convenience, there are sites such as Caring Bridge and Care Pages which have been set up for just such situations as this.

As the Younger Techapillan’s preferred means of communication was MSN, Techapillan family and friends quickly became familiar with MSN and sites such as Meebo so they could communicate directly with him. Bandwidth wasn’t always good enough to use MSN’s webcam feature, but those who did manage to communicate with the Young Techapillan this way were always highly delighted at being able to see and hear him, even if very jerkily.

The Younger Techapillan was too sick – or too at risk of becoming sick – to attend school for more than a handful of days, so the school set up MSN and a webcam at their end. Technical and bandwidth issues caused a few problems, and it was a bit difficult for the Younger Techapillan to really feel part of the class under these circumstances, but it was better than nothing.

Anyone who has had a child with cancer will know that medical emergencies – fevers, uncontrolled bleeding, mouth and throat ulcers – can crop up expectedly. One moment, all will be well. Ten minutes later, you know a visit to Casaulty is inevitable, and any plans for the next few days must be put on hold.  A complication in the Techapillan household is the little matter of hearing problems. Here is where the National Relay Service was a lifeline, enabling Techapilla to contact the hospital directly to seek advice or to warn them that the Techapillan family would shortly be turning up in Casaulty.

There are lots of online support groups out there, for both parents and young patients. Techapilla was a bit worried at first about the kind of environment online groups would provide for young patients, but the most reputable require doctor/hospital referrals for membership.

Support groups for parents, like most other forums or newsgroups, can produce spats from time to time, especially among the larger groups. However, the smaller, disease-specific groups can be a fantastic source of support, with active membership including doctors specialising in the field.

The Web is a wonderful source of information, but you do need to be careful to determine what’s trustworthy and what’s not. Of course, if you’re reading Techapilla, you’ll know that already. There are a lot of sites out there, medical sites especially, which are covers for quackery and charlatans. Here’s a bit of an eye-opener – set up a Google Alert for a rare disease. You’ll be surprised at the number of spam sites which appear on alerts. Some of them quite sickening in the tactics they use to encourage the reader to click on their links.

And the good news? The Younger Techapillan is in remission.