NOTICE - this Instructable does not advocate chopping your child's head off and placing it between pumpkins to make him/her happy!!!
I was mooching around Instructables.com yesterday and I came across two inspiring Instructables that completely changed my view of this wonderful website.
I had got into the blinkered mind-set that it was all about physically making things and these turned that concept on its head. So I have decided to provide an Instructable about how we survived childhood cancer in the family through making, having fun and learning. Thanks to the family of Hunter Winship for their inspiration.
Back in 2013 my son Jacob was diagnosed with Anaplastic Large Cell Lymphoma (ALCL) and had an intense 6 months of chemotherapy. Such treatment is hard for the kids, they feel rotten, are in pain but with the right approach you can get through it and have fun on this unexpected journey.
So this Instructable will hopefully inspire similar families to keep on making and having fun..
Step 1: Beads of Courage
What is Beads of Courage?
This is a worldwide program that helps children with life threatening illnesses or injuries tell their story using colorful glass beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.
How Does it Work?
Their Beads of Courage journey begins when each child is first given a length of string and beads that spell out their first name. Then colourful beads, each representing a different treatment milestone, are given to the child by their professional healthcare provider to add to their Beads of Courage collection throughout their treatment. The beads could be as simple as plain yellow for each day on chemo or the purple heart at end of treatment.
Does it Work?
I can unequivocally say YES to this question. I thought originally that it was a bit of a gimmick but my son loved collecting the beads and keeping track of what had happened and it is something that continues to this day with him receiving new beads whilst he still has post-treatment scans and consultant appointments.
As the children met each other in hospital they used the beads as a way of communicating their story, never spoken about but they were able to weigh each other up incredibly quickly :-)
My son has not shown his beads to anybody outside of the family but he keeps them safe and at times will use them to look back.
Although he does not get many these days, we have as a family purchased a small torch and glass rods from which we can make our own beads to commemorate family milestones and give to others.
At present the beads look like picture 4 (the one on the carpet) and this is my son's journey timeline, starting at the knot it starts with blood tests, antibiotics, biopsies before snaking to the top and down the left hand side where we can see the purple heart when he was given the all clear and the green/yellow caterpillar we had made for him at his 1 year in remission anniversary.
Step 2: Celebrate the Seasons
It can be quite isolating and lonely when one week in three is in hospital and most of the other two are spent recovering so use anything as an excuse to have fun and never consider anything to be too excessive or over the top.
Our time covered the autumn so, as you can see, we went mad collecting conkers (horse chestnuts) and having our own conker championships with dangerous battles but what are a few bruises with everything else going on :-)
Given Halloween is not really a British event, we went for it wholeheartedly buying lots of silly crafts, making pumpkin lanterns and even mocking the poorly boy who was already pale enough to be a zombie :-)
Step 3: Grab the Unexpected
One of the nice things about getting treatment at a dedicated children's hospital is that people know there are poorly children inside so special things happen. However it was always easy to think that there is somebody more deserving BUT don't underestimate your importance. The things that happen are evenly distributed around the hospital fairly so take up the offers.
We were lucky enough to meet Evander Holyfield (not that a 10 year old would know who he is until we researched him), attended the Doctor Who 50th Anniversary episode screening and got some Lego. All equally appreciated for various reasons and all will be remembered in years to come.
Step 4: Have Fun Regardless
The truth is that you are where you are so cannot change certain aspects of what is going on. So make your own entertainment even if others might think that you shouldn't.
The nurses work hard but love to laugh and a bit of silliness is appreciated.
Here we have two interpretations of the Leaning Tower of Pisa using pee pots and vomit pans :-)
Step 5: Continue the Learning
One of the biggest problems when a child has to spend a lot of time in hospital is one of boredom. So keep those little grey cells firing by making use of any learning opportunities.
We were luck enough to have an on-site school and because in-mates are confined to the oncology ward, school comes to you :-) We never forced our son but every morning he just got up and went to class on all but the very bad days. He would usually only do 90 minutes or so before lunch and a little after lunch but it seemed to keep him active and engaged in learning.
Get their school to provide some input into the work they do and you will be surprised how soon they are back in the flow and have caught up any missed subject areas once back at school.
This was in fact the time when he learnt all about stop motion animation using the iPad and created one mini-film whilst in hospital and a couple more since.
Step 6: Afterwards
My son had a short, sharp course of treatment and was only staying in hospital for about 6 months and you think that it is not very long but if you have been feeling poorly for a while before diagnosis plus the treatment period then to such a young person that is a significant period.
So when baldy boy was all done with treatment, he emerged as a completely different person; older, wiser and having gone through things us adults do not comprehend. Which of these things made the difference? I do not know but he was a man, fearless and up for a challenge.
The photos show his new found love of climbing, the first in the garden and the second at GoApe, a course combining significant tree climbing, swinging and zip wires.