Baby Mighty Mack's fight against acute myeloid leukaemia

 

On 13 May 2021, Mackenzie "Mighty Mack" Friedman was diagnosed with acute myeloid leukaemia (AML). Seemingly overnight, the perfectly healthy four-month-old became a very ill cancer patient in need of urgent treatment - and a bone marrow transplant.

Megan Harrington-Johnson describes her baby's journey

To be quite honest, we're still trying to process what has happened over the past two months. One day everything was just perfect - Mackenzie was a happy, healthy four-month-old little girl. Within a week we were in an oncology unit! She'd never been sick before and when she became a bit restless at night, we thought it was a normal sleep regression phase.

On Saturday, 8 May she woke up a little fussy with a slight fever, which she'd never had before. As a first-time mom I naturally overthought it, so we took her to our GP, Dr Colin Kahanowitz. He couldn't detect any signs of infection but told us to come back the next day if she was still ill. Although her fever had broken, we decided to take her back to him. He told us that "Something's just not sitting right with me" and sent us to Mediclinic Sandton to see a paediatrician. We stayed overnight while they did some tests.

Receiving the diagnosis

My husband Bronson and I were in complete shock when we were told our little girl had acute myeloid leukaemia (AML) - cancer of the white blood cells. We received the news from Dr Nadia Beringer, our oncologist, five days after the onset of her symptoms. Cancer has thankfully never been close to home for us. We'd heard about other people's parents being diagnosed with cancer, but never someone's child. You kind of go from completely normal - Mackenzie having a fever and a possible bacterial infection - to total disbelief at the fact that she has been diagnosed with cancer.

Getting our ducks in a row

My husband and I were both all over the show, struggling with every imaginable type of emotion - anxiety, denial, terror and more. Strangely enough Bronson's practical side as an independent wealth manager kicked in straight away. One of the very first things he did was to phone our Discovery Health Medical Scheme consultant, as he knew we were going to need their support. Aside from being Discovery Health Medical Scheme members, our portfolio also includes Discovery's short-term and life insurance products as well as income protection. For that, we thank God as we are both self-employed. Just having the confirmation that they were going to be with us on our journey gave us some much-needed reassurance.

Starting the cancer treatment journey

Mackenzie was transferred to the Donald Gordon Paediatric Oncology Unit and the two of us moved to the hospital to be with her. There are so many unknowns when it comes to childhood cancer. There are also many different types of childhood leukaemia and we had no idea what we were dealing with. Every child's journey is different. You can't predict and you can't dictate. Everything happened so fast and although we felt like we couldn't breathe sometimes, we were thankful for the fast action of all the doctors. It meant a very early diagnosis, which offers the best chance for a better outcome.

Starting with chemotherapy

Two days after Mackenzie was formally diagnosed, she started chemotherapy (chemo). Unfortunately, her cancer turned out to be extremely aggressive, so she needed aggressive treatment. It was terrifying. We knew that there were huge risks (because babies can die from chemo) but we had no choice.

While she was undergoing all her tests, we'd hoped she would be diagnosed with a less aggressive, more common cancer that is easier to treat, but it was not so. It was a huge blow to hear that she has a very rare variant that can't be treated with chemo alone. The only real solution is for her to have a bone marrow transplant at a later stage, but she has to go through two rounds of chemo before we can get there.

For 11 days our little girl endured a very intense round of chemo (24 doses) and regular blood and platelet transfusions. She was an absolute star and did very well until the last day of chemo on May 24 when she picked up an infection.

More and more infections

Since then, Mackenzie has dealt with one infection after another. Although this is expected with chemo in a very small child as it weakens their immune systems, her infections were relentless, draining her and us of all our energy. Our lives have been a day-to-day emotional roller coaster ride. We soon understood why our oncologists manage their patients' conditions for hours at a time, because things can change so quickly. That's what continually happened with our little girl.

Going onto a ventilator

Mackenzie was first put onto a ventilator soon after finishing chemo at the end of May. She had very high potassium levels because of a bacterial infection. This meant she was in acute renal failure (kidney failure) and was going into septic shock. Thankfully she bounced back very quickly and came off the ventilator the next day. However, her infections unfortunately continued.

On Bronson's first Father's Day, the doctors decided to put Mackenzie into an induced coma and move her back onto a ventilator as a precautionary measure. It was a chance to give her tired little body a break after fighting so hard against all those infections. It was so difficult not being able to hold her, hear her or even see her eyes - a real low for us both.

Going from bad to worse

A week later the doctors became concerned about a spot (a mass) on her lung. She then started having seizures. This led to all sorts of concerns about the cancer spreading to her brain or meningitis. A lumbar puncture gave her the all-clear, but a CT scan showed that the lung mass had grown.

They suspected a cancerous growth, but she was too weak to be operated on or to even have a biopsy. We had no choice but to wait it out. It was our worst day in the journey so far. And then Bronson and I tested positive for COVID-19.

Coping with COVID-19

For the first time in eight weeks, we had to leave the hospital. I couldn't bear the thought of Mackenzie being alone. We scrambled to get permission for her granny to move in with her after she had a negative COVID-19 test. She stayed with Mackenzie for five days and then she tested positive too.

I've never been more terrified or felt more out of control. I have a Type A personality, I'm an attorney who runs my own business, and this was the worst situation imaginable. I'd handed my child's life over to doctors. I was trying to come to terms with the horrors of her illness, and now Bronson and I were dealing with something just as frightening and unpredictable. We didn't think it possible, but things got even worse.

The nightmare continues

Mackenzie initially improved while we were in quarantine, but the lung mass continued to grow. Then we got the call that every parent dreads. The mass was pressing against her heart and they needed to perform an urgent thoracotomy - a surgical procedure where a cut is made between the ribs to see and reach the lungs or other organs in the chest or thorax. It was so extreme (even for a healthy adult) that they allowed us to come into the hospital in full PPE to see our baby before the surgery - and in their minds, to possibly say goodbye. She lost a third of her lung during the procedure, but once again Mighty Mack rallied so well that the doctors were all blown away.

Miracles do happen! (Update: July 30)

The good news is that the mass was not cancer! It was an abscess: a combination of bacteria and fungi which created this mass in her lung which was resistant to antibiotics. This was the cause of her ongoing infections and the seizures.

Mackenzie came out of the coma on July 18 and off the vent four days later. We then received the most incredible news: the results of her latest bone marrow biopsy. Despite her count having been at 6% at her last extraction six weeks ago (after round one of chemo) she has somehow managed to kill her own cancer cells while in a coma and her latest count is 0.1%!!

-(AML occurs when young abnormal white blood cells called blasts - leukaemia cells- begin to fill up the bone marrow which prevents normal blood production. It's diagnosed when 20% of white blood cells in the bone marrow are blast cells.)

There is literally no explanation for this and our oncologist has called it a miracle! What this means it that she is technically in remission. We're also able to do the bone marrow transplant far earlier than expected so right now our transplant physician is scrambling to sort out donors.

Mackenzie started her second round of chemo on Monday July 26 which will take 28 days and then we will do the transplant. We're praying that she gets her minimum residual disease count even lower as this makes the chance of relapse post-transplant far less.

We couldn't have done this alone

We've learnt that the only way to deal with a cancer journey like this is in bite sized chunks. So you take one step at a time, otherwise it becomes too overwhelming. We have a long road ahead of us but Mack is a truly spirited little fighter who keeps beating the odds and amazing her doctors. We know that she will continue to do so until we can get her through her transplant.

We couldn't have survived this extremely tough journey without the support of our incredible doctors, our wonderful family, friends and extended community, Mack's amazing Army - literally hundreds of people working behind the scenes organising blood and bone marrow drives - and Discovery Health who have really, really gone the extra mile. We are eternally grateful to each and every one of them for all their help and their care as well as their love and prayers.

  • For more information on Mighty Mack's journey, visit the family Instagram and Facebook pages.

Becoming a blood and marrow donor

Mackenzie needs a blood transfusion every second day and platelets every other day because of her type of cancer. Mack's "Army" has created so much awareness about donating blood. According to Donor Relations Petitioner, Gladness Sathekge, the South African National Blood Service (SANBS) has received a lot of new donors. "We would like to request that those donors become regular donors", she adds. You can donate blood every 56 days.

As mentioned, Mack will need a bone marrow transplant in future. According to Jane Ward, Deputy Director of the South African Bone Marrow Registry (SABMR), parents are not always a stem cell match for their children. At the time when Mack was diagnosed, there were only 74 000 registered bone marrow donors on the South African Bone Marrow Registry. Jane says they generally aim for 5 000 new donors a year, but since Mack's Army started helping, they are receiving over 1500 registrations a month. There is a one in 100 000 chance of being a match for any patient. Besides Mighty Mack, there are multiple patients across South Africa in desperate need.

Jane explains that a simple cheek swab will determine whether you are a match, and the actual bone marrow donation is similar to undergoing a blood platelet donation. It's not as invasive as many people think. The matched donor will undergo a full medical examination to determine their health status and assess whether they are at any risk during the donation process. Once medically cleared to proceed, the donor will receive a five-day course of daily granulocyte-colony stimulating factor injections to increase the number of stem cells in their blood. On the fifth or sixth day, the donor will be admitted to a medical facility and connected to a stem cell separator for a life-saving five-hour procedure.

Want to register as a bone marrow donor and expand the donor pool?

This will help the SABMR make sure that every patient who needs a bone marrow transplant has hope of finding a match.

Every year, thousands of people with leukaemia, other blood diseases and immune disorders reach a point where the only possible cure - and their only chance for survival - is a bone marrow transplant. Applicants between the ages of 16 and 45 who are in relatively good health may apply or contact SABMR for more information.

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