Derek Mohr, a friend and deeply respected colleague shared what happened with his life over the past 9 months via email on 18 Sept 2014. It’s such a sad yet beautifully poignant note about his granddaughter… in the event that it is meaningful to you.
On 13 December 2013, my precious, then 2-year old granddaughter Emma Barnes had blood tests and a full blood count done for recurring minor illness and potential allergies. (Emma turned 3 in January this year). The tests showed that she potentially had leukaemia. This diagnosis was confirmed the following day by a paediatric oncologist (Acute Lymphoblastic Leukaemia) and 2 weeks later was identified as Philadelphia positive ALL, a rare form of leukaemia, requiring very intense and aggressive chemotherapy. For the next 8 months she bravely endured the most awful treatment regime (the hair loss and nausea people generally associate with chemotherapy is by far the least of what these children go through).
Emma’s blood and bone marrow test from 10 days ago showed that the treatment had been successful and she was in full remission. She was scheduled for another 2 years of “maintenance chemo” during which she could lead a fairly normal life. Last week Thursday Emma was readmitted to hospital (by now a fairly normal occurrence) with some gastrointestinal problems. Unfortunately during the early hours of Saturday morning her blood pressure dropped suddenly and her oxygen saturation levels became very low. She was taken to the paediatric ICU unit, put on a ventilator and numerous monitors and was fairly stable although critically ill.
She then went into cardiac arrest, was resuscitated, again went into cardiac arrest and died at 10h18 on Saturday morning from as yet undetermined causes. Ironically it wasn’t the cancer that killed her – the bone marrow results showing that she was clear of the leukaemia were received on the same day.
Should you wish to know / understand a bit more of Emma and her mommy’s journey, please read my daughter’s blog at http://musingsofanoncomom.wordpress.com/
It is very likely to improve your perspective on life.
During the course of this journey many have asked us: what can we do / how can we help? Often we are aware and concerned about the plight of someone and really don’t know how to respond – often the easy way out is to say something encouraging and not get involved.
Yet there are easy ways in which the everyday person can get involved (even quietly and anonymously, if that is your wish).
Below are some points to ponder if you are someone who cares about the wellbeing of others.
Blood. Before you say “ooh, not that, what else” and believe donating blood is a painful or traumatic experience (as some have claimed), or if you’re scared of needles, consider this: During Emma’s treatment she faced a number of blood and platelet transfusions, many injections, Lumbar punctures, Bone Marrow aspirations, numerous Intravenous drips, surgeries to insert semi-permanent intravenous lines and countless blood draws. Little Emma would cry about the pain but she would bravely stick out her arm or leg and say “I want it now Mommy, get it over and done with” and then not jerk back while the procedure was administered. A pricked vein once in six weeks to donate blood is really nothing. If you need any motivation (as I did before becoming a new donor at age 61) you need only to stand in the paediatric oncology ward where children are fighting for their lives (some of whom have since lost the battle), desperately in need of blood or platelets and having to wait up to 48 hours because there was NONE available. Please donate blood or platelets if you can and encourage others to do so. You are literally saving lives. For contact details and information see: South African National Blood Service
Awareness. The incidence of childhood cancer is much higher than what I ever realised. The impact on the children and their families’ lives is quite devastating (including the impact of the long and arduous treatment). Yet most of us aren’t affected and choose to go through life ignorant of their need. Make a change and find out more about childhood cancer:
- Read up on the Internet (Google is your friend)
- Visit the paediatric oncology ward at a large hospital near you and speak to the staff and some of the parents
- Read the blog I mentioned above (http://musingsofanoncomom.wordpress.com/)
- Contact one of the support organisations below (visit their websites) and enquire as to what they are about.
- Support campaigns and events advertised in the media
- Most of all, talk about it, even if you start with “Hey, you should see the weird e-mail I got from one of my Linked-In contacts, a guy by the name of Derek Mohr. Feel free to forward this e-mail. It is the silence of society that causes these kids to suffer alone, off to one side, ignored by the mainstream.
Get Involved. You don’t have to become a public activist or give money to get involved. There are a number of things you can do in a simple small way that will change the lives of others (and I guarantee it will change yours in some way):
- Contact one of the support organisations listed below and say “I am …… and I want to get involved in what you do. How can I help?”
- Mobilise a group of people in your community, company or church to help. (You won’t have a problem with how to spend your 67 minutes on Mandela Day next year)
- Contact your local hospital, ask where they treat paediatric cancer cases and pay them a visit. Chat to the staff and parents, visit a child / children (if they’re not in isolation as they so often are, because the chemo destroys their immunity to infection).
- Find a patient / parent and ask if you can share in their journey.
- Don’t just sit there reading weird emails like this one. Get out and do something!
Financial / Material Support. See, I still haven’t asked anyone for money. If you so feel however (at an individual or corporate level), all of the organisations below are in constant need of financial and other material support, as they are often constrained from doing more by lack of support. Your local Paediatric Oncology ward will also welcome donations of toys, games and other goodies that can be used to comfort their patients in times of suffering and depression.
Organisations that do great work and need your support:
- South African National Blood Service
- Paws for People
- Rainbow and smiles
- Little Fighters Cancer Trust
- The Cancer Association of South Africa: CANSA
- CHOC :: Childhood Cancer Foundation South Africa
- Reach for a Dream
If you have read this – I really appreciate it and trust you will give some serious thought to what I have said above.
Please feel free to contact me if you need more information or want to discuss any of the above.
Derek Möhr, PMP
Do what’s right and change your world
Mobile: +27 82 573 5596
Landline/fax: +27 12 345 4553
Postal: P O Box 625, Wingate Park. 0153