9-month-old diagnosed with leukemia, mom organises blood donation drive

September 4, 2018
About a week-and-a-half ago, someone shared a post on my Facebook timeline, about how the South African National Blood Service (SANBS) was in dire need of blood platelets. The mom who originally shared the post, Natalie Beveridge, has a nine-month-old Kieran, who was recently diagnosed with leukemia.
I was touched and amazed by a mom who is not only dealing with her son’s diagnosis and impending treatments, but who is taking the time to motivate people to donate blood, and who has organised a blood drive on Saturday and Sunday. I donated blood the day after learning about the need for platelets, and I also wanted to feature Kieran’s story, and more about the blood drive, at Dainfern Golf Club on Saturday.
If you can make it, that would be awesome, but if you can’t, you can head to your nearest clinic. I know people are worried about needles and pain, but is it that bad that you can’t save up to three lives, and keep infants like Kieran alive with platelets.
Here Natalie answers my questions:
Can you tell me a bit about yourself, and your baby’s diagnosis? What’s his current treatment plan?
I am a mom to two beautiful boys Connor, 3.5 years old and Keiran, nine months old. We have a wonderful home and family life and like any young family have dreams and plans for our future. That future has been ripped away from us for the time being as we got the devastating news that Keiran has AML Leukemia.
As a family affected by childhood cancer, I can tell you it’s a disease that affects the entire family structure, tearing you apart and throwing your world upside down. It’s not only the trauma of the diagnosis and overwhelming amount of information that assaults you from every angle, but it’s the emotional, physical, financial and spiritual drain that knocks the wind right out of you.
I feel like I have been robbed – robbed of my baby Keiran and robbed of my time with my three-year-old. You have to split yourself up between the hospital and home, and this then also places immense strain on your marriage as you pass your husband in the passage ways of the hospital, mainly discussing this disease and living on a knife’s edge knowing at any second things can change.
Keiran was diagnosed on the 1st of August with AML leukemia, a very aggressive form of leukemia which necessitated immediate chemotherapy treatment. He had been struggling to overcome the winter colds/flus and just wasn’t getting better, and we were at the doctors almost every two weeks, and the treatment protocol was always the same.
He also had a growth on his leg which I noticed in early May and this growth was growing rapidly. I had a terrible feeling one weekend that this growth was cancer but after a consult with three specialists I was assured it was harmless and not cancerous. Eventually I became exasperated – Keiran was waking about six times a night (worse than a newborn). I was sleep deprived and at my wits end. I figured things like sleep regression, teething, hunger, mental leap etc, but nothing I tried seemed to help.
When Keiran started presenting with a rash in the last week of July on his stomach, back and hairline along with nasal congestion, rapid heart rate and erratic breathing, I knew something was terribly wrong. After five visits to doctors’ rooms in the week preceding diagnosis, we insisted on blood work.
The full blood count revealed the ugly painful truth- my baby was critically ill and this was going to be a battle for his life. My advice to any mom – insist on bloods to get an accurate diagnosis. It may be nothing but it can tell you a world of information and save you an immense amount of trouble. A little prick on baby’s arm is a small price to pay just for peace of mind. Trust your gut – I kept asking the question about cancer and never once were bloods taken until I was freaking out on the day of diagnosis
His treatment plan is aggressive chemotherapy for 6-8 months and during this time we will live inside the hospital in isolation and away from the rest of the world. Once he has completed all his chemo and the follow-up tests, he’ll be in remission and will have a years worth of maintenance therapy as an out patient.
Why are blood and platelets so critical for him?
As Keiran has leukemia, his bone marrow is unable to produce healthy blood cells – white, red and platelets. The chemo also kills his white cells, which is produced by the bone marrow to kill off the leukemia. As a result he needs frequent transfusions to survive. He currently undergoes three platelet transfusions a week and one red blood cell transfusion a week.
How long does he typically have to wait for platelets?
As platelets have a very short half life (less than 12 hours), when platelets are needed the blood bank needs to get a donor to donate and then the platelets are couriered to hospital for immediate transfusion. Platelet donors can donate every two weeks, which is a critical component, ensuring babies and sick people like Keiran don’t bleed to death.
What do you want people to know about donation that they might not already know?
  • Donating blood takes approx 15 minutes and can save up to three lives.
  • Regular blood donation is key to alleviating pressure in the system and thus blood and blood product are delivered to sick patients in a quicker turnaround time.
  • The South African National Blood Service has donor centres all over the country and you can pop past on your way home from work to donate.
More than blood donation is getting onto the bone marrow list… how does one go about this?
Many people think becoming a bone marrow donor is a horrible and painful experience popularised by the movies.
While this may have been the case 20 years ago, today technology has advanced so much that to become a donor is as simple as having a blood test to tissue type you and a cheek swab is also done in some instances. Once you have tissue typed, your details are loaded on the bone marrow registry and if you are matched to a sick patient you will be contacted for the harvesting process.
Harvesting is like a blood donation except they run it through a machine similar to dialysis and they take the stem cells from your blood to transplant into the patient requiring the transplant.
Please look at the Sunflower Fund and the South African Bone Marrow Registry of South Africa to sign up and become a donor.
Can you give info on the blood drive?
The blood drive for Keiran on Saturday is to raise awareness and educate the public around regular blood and platelet donation this will go a long way in helping critically ill people in need. It’s on Saturday 8th and Sunday 9th at Dainfern Golf Estate. If you can’t make it to the drive please go to your nearest donor centre and sign up to become a donor. For more info on your nearest clinic, go to SANBS.
How can people get involved if they can’t get there, or if they can’t donate for various reasons?
Create awareness and educate yourself on blood and bone marrow donation there is a lot of myths around the actual process which needs to be addressed. Support families affected by cancer by helping to support cancer charities as they provide a financial platform to help families with costs incurred while fighting the disease.
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  • Lorna

    Hi Tanya, I have no words, it’s hard enough having a husband fighting the disease let alone your child. I’m happy to say I’m in the process of registering as a platlet donor and bone marrow donor and hope that I can make a small difference. #bethehope

    September 4, 2018 at 7:57 pm Reply
  • Carol Warren

    Hi, I am the Grandmother of Reef Carneson, and your story is almost a duplicate of ours with Reef. He was diagnosed with ALL at 5 months, had a bone marrow transplant at 11 months, is cancer free and will be 10yrs old this month. I feel for you all as a family, it’s been a long hard road for us all,and he suffers with GVHD – from the bone marrow transplant. But never give up, especially with gut feelings, they’re never wrong. Ask all the questions, question everything, it pays off. If you would like to contact my family to answer any thing you may want the answer to or are uncertain off please contact me, on private messenger, and I will put you in touch with them. They’re in the USA and have been for the last 8 yrs receiving ongoing treatment there. My Grandsons FB site is 1000 candles for baby Reef, love to you all,

    September 5, 2018 at 5:56 am Reply
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