, our only child, is 4 years old and was diagnosed with ganglio neuroblastoma or cerebral neuroblastoma, a very rare form of brain cancer
. This is our story:
On the 3rd of July, this year, she woke up feeling sick, vomiting and complaining of headache. As a happy, clever and busy child that has never showed any disturbing symptoms, we are thankful that we took her to our family GP this specific morning.
We were nervous that she might have meningitis, in our minds the worst thing that could possibly be wrong. Even though the GP eliminated all the warning signs for meningitis, he took the safer route and had blood tests and x-rays done. Nothing alarming showed up in the pathology and on the x-rays and everything seemed normal.
Our GP knows Mihla well, and her lack of humour and cheekiness bothered him. He admitted her to hospital, under our local neurosurgeon, to make sure that meningitis was off the table.
In hospital, the neurosurgeon confirmed what our GP told us earlier – that there are no clear signs for meningitis. He gave Mihla intravenous antibiotics for meningitis to monitor how she felt instead of doing a lumbar puncture that would confirm whether she had meningitis or not. Today, we are so thankful for this decision.
As we watched our little girl sleeping, faint and tired, we felt an alarm rising in our chests, like something willing us to do something extreme. After a bit of debate amongst ourselves to not overreact, Rudo decided to phone both the doctors after 7 at night and ask to do a CT scan. Right NOW.
As we took Mihla to the scan room, she was trying to make jokes with her dad, but she was unable to smile. She had to lay still for 3 minutes, something she would never be able to do, but the moment the noise from the scanner started, she passed out, and woke up only after the scan. Less than half an hour later, the neurosurgeon came into our room. “She has an enormous mass in her head. I am so so sorry.”
There are no words to describe the panic, fear and sorrow of a parents’ heart breaking for their child if you have not gone through this before.
“We have to operate. Tomorrow”
She was moved to ICU, and we both remember dosing of next to her bed and then jolting awake, with our heart hammering in our chest. If we had done a lumbar puncture earlier, the high pressure in her cranium could have resulted in her death. “A diagnostic lumbar puncture (LP) may then precipitate herniation or coning of the brain, often with fatal outcome.” (Paediatrics, June 1999, Volume 103/Issue 6)
The hospital and doctors did everything they could to ensure the best outcome – with regards to staff and all available technologies. And prayer. The doctors and staff prayed for us and with us, more than once or twice. We remember her going into theatre, and the heartache of not knowing how long or how successful the operation will be.
As the neurosurgeon opened her scull, the tumour heaved outwards due to the extremely high pressure in Mihla’s skull. They drained more that 70ml of fluid from the tumour and successfully removed the rest. She woke up after surgery, asking for some Fanta, and her recovery was remarkable, as if you could actually imagine everything was just a dream, and life can go on as normal.
On the 13th of July, she underwent another leak repair surgical procedure to close up the wound again, when it started leaking brain fluids.
In the meantime, pathologists in Rustenburg were puzzled by the tumour, and referred it to Pretoria, which in turn referred it to The Red Cross Children’s hospital in the Cape. There Prof Pillay diagnosed cerebral neuroblastoma – for the uninformed person, cancer. It was a second knife stab in our hearts, a concept so ridiculous that it took us weeks to comprehend. Even now, we struggle to believe our daughter has cancer. And not just any cancer.
Extremely rare, articles note that you might come across this brain cancer once in a decade. Her neuroblastoma has a 40% chance of reoccurrence. As keen and trained researchers, we soon discovered that almost NO accredited (or not accredited) articles on this cancer is available. Articles dating to the 70s and very long ago has a terrible prognosis for cerebral neuroblastoma, and records only about 75 documented cases. How is it possible that a little girl, from South Africa, gets this incredibly rare form of neuroblastoma?
Prof Reynders and the paediatric oncology team at Unitas confirmed the extremely rare case and supported us in getting a treatment plan review from MSK (Memorial Sloan Kettering) in the USA. In her MRI scans an area with high blood flow was indicated, that could possible be a tumour forming. This necessitated radiotherapy.
While we communicated and paid MSK, Mihla received US protocol chemotherapy because she is too young to receive full brain and spine radiation. “Children younger than 3 years are usually not given radiation because of possible long-term side effects with brain development and growth. Cognitive issues occur often after treatment with radiation. Memory, motor skills, learning, and behaviour are areas that may be affected, depending where in the brain the radiation is directed. Children who have received radiation therapy may struggle with learning disabilities” (American Cancer Society, August 12, 2014)
Treatment plan review: $ 4,500 USD
The treatment plan review can be viewed as an attachment to this document. It can be outlined as follows:1) Chemotherapy as per protocol2) Radiotherapy – proton therapy recommended to minimize long term effects at Procure 3) 131-I-8H9 at Memorial Sloan Kettering Cancer Centre4) Impact testing in the event that target specific drugs are available
Treatment steps 2,3 and 4 are only available in the USA and thus not covered by our medical aid. With regards to treatment step 2:
“Radiation therapy is commonly used to treat patients with high-risk neuroblastoma after surgery, to kill any remaining cancer cells and to reduce the risk of the cancer coming back. While the radiation dose currently used in these patients is effective, it can cause long-term side effects. Proton therapy uses charged particles to target tumours with precision while reducing the risk of treatment-related side effects.” (Suzanne Wolden, MD, MSK) With regards to treatment step 3:
“In 2003, Sloan Kettering’s neuroblastoma team discovered an antibody treatment, 8H9, that has been proving wildly successful in kids with brain relapses.” This treatment is injected into the patient’s spinal fluid.
“Prior to 2003, all children who had brain involvement of neuroblastoma died. Since 2003, dozens have been treated with the antibody and have been cured. Our longest survivor is a high school football player. It’s made a world of difference.” (Dr. Kim Kramer, MD, MSK)Treatment step 4
looks at Mihla’s DNA. This test will also be able to help children that has this rare form of brain cancer in future, as we will consent to make all data available for research.
Mihla has a great
chance of not relapsing and curing if we are able to give her the required treatment. Follow up review: $ 2,000 USDIn depth genetic impact test: $ 5,500 USD Proton Therapy: $ 164,856 USD – ProCure Proton Therapy Centre, New Jersey 131-I-8H9: $ 350,000 USD – Memorial Sloan Kettering (Dr. Kim Kramer)TOTAL ESTIMATED COST: $ 522,356 USD
The chemotherapy has been tough on us as a family, and we have been catapulted into a different world with much more pain and sorrow with regards to children. It is hard to see your child, and other children suffering, and dying. It does not make you stronger. It stretches your emotions and love and breaks your heart into a million pieces.
But we are positive and enthusiastic to raise enough funds to give our daughter her best chance. And to contribute to the next one in a million child that has cerebral neuroblastoma. Shani resigned from her teaching post to care for and teach Mihla in the chemo protocol that lasts until 2019.
In every step of this process we have felt guided, and we would appreciate any help we can get.
Any additional information is available on request.