30 May 2022
On 11 May 2022, 365 days have passed since my son’s autologous stem cell transplant.
We were supposed to celebrate his second “first” birthday – his second chance on life, but on 2 March 2022, we got the devastating news that my son has relapsed - despite all of the grueling treatment he has undergone.
The cancer is back, and it has spread. Again.
There is nothing more the oncologist can do to fight, kill, and cure this aggressive cancer.
The diagnosis is now terminal, and the cancer can’t be removed surgically.
(Please see the videos below - our journey since he got sick in 2020)
I am pleading for your urgent help and prayers again. Please.
As you might know by now, I am a single self-employed mother and my son’s primary care giver. It has now been more than 2 years that I have not receive an income, because of:
· The financially disastrous impact Covid had on my company during hard lockdown, as it did with millions of other people across the globe.
· I couldn’t invest the time and resources needed to get my company back up and running to generate income because I was, and I am still:
o FIGHTING FOR MY SON’S LIFE during this intense oncology treatment protocols,
o Fighting against and through the uncertainty of all these horrifying side effects,
o AND during the countless hospitalisations, tests, and scans.
o Continually seeking alternative treatment and options
· The emotional distress, financial impact and mental strain this cancer journey has on me is immense, and it is currently depriving me from so much precious time from my son.
I am sharing our story with you for two reasons:
1. Firstly, to ask you to Please continue to lift my son up in prayer and to please ask for complete and total healing.
To rebuke, in Jesus’ name, this horrid cancer, pain and all the side effects his body is trying to fight.
Please pray for wisdom, strength, and guidance.
We can so easily underestimate the power of prayer, but
We are serving a very powerful God – King of all kings and I can guarantee and proof to you that He still performs miracles.
Despite his diagnoses (explained in detailed below), we are fighting this uninvited destructive thief with everything we can. We will never give up, but we are surrendering and are placing my son in Gods' hands!!
I don’t know what the future holds. BUT I do know Who holds the future!!
2. Secondly, I am desperately sharing our journey with you, and humbly and very embarrassingly asking to please support me in raising funds to:
a. Give my little boy a fighting chance,
b. To cover the current costs for alternative treatment and to further the research for the alternative treatments and options – none of the alternative options are covered by the medical aid,
c. To please assist me in providing not only the basic daily needs and requirements for my son, but to keep the roof over our heads and just to keep food on the table.
I am in desperate and urgent need for financial assistance please until I get my company back up and running. Our lives are filled with so many life-threatening and medical uncertainties.
I am in the process of losing everything. I am also in the process of selling my car and have no means to pay any of my expenses - including our rent.
The continuing research for alternative treatments - that will not only fight the cancer but will also build and repair his immunity and repair the damage done to his kidneys and liver - is consuming a lot of my time that is meant to spent with him and to try and generate an income. I just desperately want to provide him with the basic aspects of a quality pain and carefree life whereby he can focus on school and just being a young boy – living every day to the fullest and to make memories with him.
None of the alternative treatments are covered by the medical aid and I have been advised not to change my medical aid plan, currently R 9 000.00 per month, to ensure I have adequate cover for the uncertain future or even in the event my son should require palliative care and to manage a pain free life.
Currently his supplements alone are R 4 500 a month over and above his special dietary needs to help with his microbiome, repair his kidneys and liver (as he battling to fight the side effects of the treatment) and to assist his body to regulate his cortisol levels since he lost his one adrenal gland when they removed the original tumour.
There are R 56 000 in medical bills outstanding from last year’s treatment, that I still need to pay.
The list just goes on and everything is starting to pile up.
The overwhelming financial and emotional stress of keeping a roof over our head, food on the table and cater for his basic daily needs is starting to take its toll on me – over and above what has happened the past two years.
Life is extremely precious, and at times we tend to focus more on striving towards our dreams and goals, or even just to survive, that we forgot just to live in the moment.
I am pleading today, if it is at all possible, please help me to raise funds just to be able to live in this moment with my son and to fight with and for him.
If you are not able to donate, please may I ask if you would share our story with family and friends.
Should you be able to donate - no amount is too small, even R50 would go a long way:
Banking Details :
Account holder name: Back Baileys Buddy
Account type: Transaction Account
Account number: 15542929349
Bank name: Discovery Bank
Branch code: 679000
OR
PAYPAL:
or Use the email: baileysbuddypaypal@gmail.com
I thank you in advance with so much grace and gratitude for your time in reading our story and sharing my desperate plea for help.
I would like to use this opportunity below, to explain and elaborate what we have been through the past two years – just before lockdown, and what we are facing...
I have been struggling to find the words to write this for such a long time, whilst seeking answers to so many heart-breaking questions.
So here is what I do know:
1. What the specialists says and their statistics
2. What God says and His statistics
1. The specialists and their statistics
My son was born full term on 27 September 2012. To be exact, he was delivered on 39 weeks and 3 days. He was a perfect healthy baby boy.
For almost 7 and a half years, was he a healthy happy boy who loved maths, rugby, hockey, karate, and swimming. He loved school, making friends new friends wherever he goes and always want to find solutions to problems.
In May 2020 he became sick. It started with extreme bone pain in different parts of his body.
Over a period of 6 months, he saw various specialists:
· 3 G.P.’s, 2 Pediatricians, 2 Rheumatologists and one Professor of Rheumatology. Every time they misdiagnosed my son – from gastro to Juvenile Idiopathic Arthritis. Every time the diagnoses became worse and further away from what was wrong with his health.
In October 2020, after 6 months of misdiagnoses, my son ended up in the ER after non stop vomiting, diarrhea and fever. Only on the second day when they did an ultra sound, the massive tumour was found on his adrenal gland.
He then received a fatal diagnosis with a very poor prognosis only a week after his 8th birthday:
Metastatic High Risk, Stage 4, MYCN gene amplified Neuroblastoma cancer.
Various tests, biopsies and scans confirmed the worse:
The original tumour in his left adrenal gland, bigger than a grapefruit, was squashing all his organs against each other in his abdomen. By this time, the cancer already spread throughout his whole skeleton (from his skull, to almost all his joints and limbs) even into his bone marrow.
Biopsies confirmed unfavourable histology and the 1st MIBG Curie score of 22 out of 30.
What does my son’s diagnoses mean: Metastatic High Risk, Stage 4, MYCN gene amplifications Neuroblastoma cancer with unfavourable histology?:
Neuroblastoma is:
Neuroblastoma is a malignant tumour, a particularly aggressive cancer, resistant to treatment and extremely difficult to cure. It effects the nerve tissue.
Almost 90% of neuroblastoma is found in children younger than the age of 5. The average age of diagnosis is between 1 and 2 years old. It is rare in older children and older children with advanced disease have a poor rate of survival.
Neuroblastoma is a type of cancer that starts in early nerve cells called neuroblasts. Normally, these immature cells grow into working nerve cells. But in neuroblastoma, they grow uncontrollably and become cancer cells that form a solid tumour.
Most neuroblastomas are the result of gene changes in neuroblasts that happen during the child's development, sometimes even before birth. What causes these acquired gene changes is not yet known. Random events that sometimes happen inside cells, without having an outside cause.
Often, neuroblastoma starts in the tissue of the adrenal glands. These triangular glands sit on top of the kidneys and make hormones that control heart rate, blood pressure, and other important body functions. Neuroblastoma also can start in other areas of the body with clusters of nerve cells, like in the belly, chest, or neck. The cancer can spread through the blood and start growing (metastasize) in other parts of the body, such as the lymph nodes, bones, lungs, liver, skin, eyes AND bone marrow.
Tumours may grow and press on the spinal cord, causing spinal cord compression that may cause pain and paralysis.
1% to 2% of neuroblastoma cases seem to be the result of a gene inherited from a parent.
BUT Most neuroblastomas do not seem to run in families. It spreads through the blood to other parts of the body.
The success of treatment depends on many things, including the child’s age, how much disease there is, and characteristics of the tumour.
There are no known cures for relapsed High-Risk Stage 4 Neuroblastoma.
Neuroblastoma has one of the lowest survival rates of all paediatric cancers and accounts for 15% of all paediatric cancer deaths.
Some of the Neuroblastoma symptoms that my son had to endure (and still going through):
· Abdominal pain
· Severe bone pain: his elbows, back, pelvis, femur, knees, and lower limbs
· Diarrhoea
· Fevers
· Because the neuroblastoma effected his bone marrow (makes the blood cells), he gets tired and bruises more quickly and easily.
Metastatic High Risk, Stage 4:
The child is older than 18 months and the neuroblastoma cells have broken away from the original tumour and spread to other parts of the body to distant lymph nodes, bones (skeleton), bone marrow, liver, skin, and/or other organs.
Neuroblastoma is categorized in 4 different risk groups: Very Low, Low, Intermediate and High Risk.
Each risk group has its own different stages and criteria.
The meaning of the different risks group and according to the statistics:
Low-risk group: 5-year survival rate is higher than 95%.
Intermediate-risk group: 5-year survival rate of around 90% to 95%.
High-risk group: 5-year survival rate of around 40% - 50%.
60% of patients with High-Risk Neuroblastoma will relapse.
Once in relapse in High-Risk Stage 4, the survival rate drops to less than 5%.
Any relapse in patients initially classified as high risk signifies a very poor prognosis. Clinical trials may be considered but will only deteriorate the quality of life.
Palliative care should also be considered as part of the patient's treatment plan.
MYCN gene amplified:
MYCN is important for cell growth. Having more than 10 copies of the gene is called MYCN gene amplification. Tumours with MYCN gene amplification, such as neuroblastoma, makes the cancer cells grow and divide too quickly and are more likely to spread in the body and less likely to respond to treatment.
Unfavourable histology:
Tumours whose cells and tissues look more abnormal under a microscope tend to have a poorer prognosis and are said to have an unfavourable histology.
MBIG Scan / Score:
An MIBG is a type of imaging test. It uses a radioactive substance (called a tracer). A scanner finds or confirms the presence of neuroblastoma.
This scan gives you are (Curie) score out of 30. The higher the score means the presence of Neuroblastoma is more active, and it indicates whereto the Neuroblastoma has spread.
On diagnosis in 2020 his curie score was 22/30.
After the initial treatment and before the transplant his score was 0/30.
For patients with MYCN-amplified tumours - like my son -, a postinduction Curie score greater than 0 was associated with fatal outcomes.
His curie score in March 2022, after completed all the treatment protocols, was 8.
This is not good at all
So what now?
Because of this extremely aggressive cancer, we had to fight it aggressively.
In February 2022, my son just completed every possible step in the oncology regimen protocols available to him in South Africa.
Despite the grueling treatment he has undergone, he relapsed not even a month after he completed ALL the treatment.
The past 19 months he received
· 7 months of severe invasive chemotherapy treatment
· 10 operations in 9 different hospitals under full anaesthesia, some with complications. One operation was more than six hours long during the tumour resection which destroyed his left adrenal gland.
· He had a port and Hickman line
· 4 Bone marrow biopsies
· 6 Weeks in ICU Isolation for
o Countless tests and examinations
o Conditioning: more chemotherapy to prepare his body to accept new stem cells. This regimen killed the cells in his bone marrow that left him immunocompromised with anaemia and he became extremely sick
o The grafting of stem cells for the autologous stem cell transplant,
o The transplant itself,
o Countless platelets, and blood transfusions.
o This is also where he contracted a deadly Drug-Resistance ‘Superbug’ that won’t die, and he urgently needed white blood cell donors, but God intervened quickly, and he survived this deadly bug.
o He was on adrenaline for 2weeks because of his BP dropping below normal
o He was on TPN for weeks (intravenous feeding through an IV) and they had to insert a gastrotomy tube in his nose.
o Countless blood and platelet transfusions
o There were days that he was so sick during the night, when I woke up in the morning, I had to look at the monitors to see if he is just sleeping…
· He had 12 sessions of radiation
· 6 months on an extremely high doses of Isotretinoin. This medicine was supposed to kill all remaining cancer cells and caused a list of side effects: severe bone-, joint and muscle pain, nausea, and vomiting, swollen and cracked lips and peeling of his skin, nose bleeds and eye infections.
· During the past 2 years he went through:
o Monthly blood tests
o Covid tests before almost each hospitalisation
o Hours of kidney, and audiology tests (side effects of his chemotherapy can damage his kidneys and hearing), MIBG, CT and MRI scans, Xray’s, Sonars, EKG, heart echo’s, (of which some were done under anaesthesia.)
o The list honestly goes on with hours of waiting and praying through all the uncertainty and dealing with each symptom and side effects daily.
o We also had a consultation for a third opinion with a specialist in Europe who specialises in Neuroblastoma who confirmed that every step we followed was necessary to fight this uninvited thief.
o He also fought through Covid in December 2021!
In March 2022 – the relapse was confirmed after another bone marrow biopsy, MRI and MIBG scan was done. Despite everything that my son has been through.
The cancer has spread to:
· His right elbow,
· Lower part of both his femurs (thigh bone)
· Both his knees
· Both his shins (lower limbs).
· The MRI also showed that there is inferior endplate depression of the L4 and L5 vertebral body (his spine).
I met with the Cancer Care Team: The Oncologist, a family Psychologist, and the Palliative Care Doctor to discuss the way forward.
Since he completed every possible step and protocol of these vigorous treatments, the oncologist said that he cannot repeat any of the above-mentioned regimens, as it would be too toxic for his body and the toxicity can result in death.
There are two other experimental chemotherapy options that we can try but it MIGHT only help with some of the pain relief, and it MIGHT prevent further metastasising (spreading) to other parts of the body.
BUT
This will only and most definitely deteriorate his quality of life significantly since the toxins will not only kill the cancer, but also end up killing his healthy cells too. His body is already under “pressure” now because he is not only battling to fight against the side effects of all the above-mentioned treatment but is fighting against the metastasised cancer too.
When my son was diagnosed in 2020, Immunotherapy was not yet available in South Africa for children with Neuroblastoma diagnoses but has been an option overseas. It costs Millions of Rands.
Immunotherapy is a way to stimulate the immune system to attack cancer cells. This treatment has a long list of severe, even life-threatening side effects.
Not all patients respond to immunotherapy and a severe immune system overreaction is potentially fatal.
It only recently became available in South Africa in clinical trials, but the medical aids are not covering all the costs and still leaves the patients with an exorbitant co-payment.
Even if I had the means to cover all the costs for the Immunotherapy, it would be no longer an option for my son because of the relapse. To be eligible for Immunotherapy you have be NED (no evidence of disease.)
Due to his specific diagnosis, explained above, there are no more Allopathic / Mainstream medicine or treatment options available for him.
This time the cancer cannot be surgically removed.
What now?
After praying about the next step going forward, discussions with the Oncologist and various other Doctors that are specialists in their respective fields AND with my son,
We all decided that we are NOT going to continue with chemotherapy or any other conventional mainstream treatment - although there are no options left.
We already started with alternative treatments, following protocols designed in Switzerland and America using various options like, Oxygen and Scenar therapies as well as hyperbaric chamber therapy. A lot of research has been done regarding Organic Superfoods to specifically target his microbiome.
The microbiome affects tumour initiation and progression through direct effects on the tumour cells and indirectly through manipulation of the immune system.
All the alternative treatments are not only attacking the cancer, but is repairing immune system, liver, and kidneys.
Up and till this last week, we have been successful in managing most of his pain through the alternative treatments.
We are striving to live each day to the fullest. We are celebrating the good days and praising God during the bad days.
We are also monitoring his blood counts every month, especially his HB and platelet counts to be prepared should he require blood or platelet transfusions. (In case the cancer spreads to his bone morrow.)
2. What does God say and His statistics?
Joshua 1:9 and Deuteronomy 31:8
“Be strong and courageous. Do not be afraid; do not be discourage, for the Lord your God will not leave you nor forsake you. He will be with you wherever you go. &
He goes before you – do not be dismayed.
I sit here today and wonder how much time I have wasted in worrying instead of worshipping.
Because it felt like a truckload of fear, loneliness, guilt, doubt, anxiousness was dumped on me & every time I stepped forward in faith, I was "reminded" again with so much guilt, all the other times that I have failed.
Focussing on the loneliness. The statistics. The despair.
But, you see, I have learned that satan knows he can’t touch our salvation because we are children of God bought by the blood of Christ AND
NO ONE can snatch us from our Father’s hand.
Thus, the enemy wants to distract us with the things of this world so that we have no time to devote to our Heavenly Father - whilst he tries to steal from us:
Our happiness, health, wealth, peace...
Leaving us exhausted. All. The. Time.
Although the enemy can’t control our thoughts - he can influence it.
He whispers thoughts of fear, anxiousness, guilt etc, to control our lives.
he wants to make you feel lonely & isolated and trust me – he tried to do a pretty good job in convincing me in that.
his purpose is to Deceive you then ultimately DESTROY you.
satan chooses his timing. he knows when we are at our most vulnerable and attack our weakest spots first.
he uses fear to control us & prevent us from moving forward, to live in peace & joy that God intended for us.
Jeremiah 29:11. “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future”.
I am still learning daily to acknowledge my weakness & to take it to Christ first, because I know
GOD LOVES US & wants to help overcome our fear and anxiousness.
Fear is expecting the devil to move
Faith is expecting God to move.
Worry is faith in fear
Worry sees only the problems
Faith sees God. God is bigger than any problem that we might ever encounter.
It is a daily choice.
Remember, tomorrow is promised to no one. Whatever trials and tribulations you are facing in your own life – remember God promised:
I've said these things to you so that you will have peace in me. In the world you have distress. But be encouraged! I have conquered the world.” John 16:33
Don’t let the enemy install fear in your life and steal your life, love, relationships, joy & your faith.
When fear knocks – Surrender to God & ask Him to answer the door for you. Ask God to be your enemy's enemy.
Pray! Breath. Then pray again.
WALK IN FAITH - NOT BY SIGHT.2 Corinthians 5:7
The scripture reminds us:
Psalm 46: 1
“God is our refuge and strength, an ever-present help in trouble.”
God reminds us in the Bible that HE is going to be a very present help in times of trouble. He is not only with us in the mountain tops – He is with us in the valleys. He knows what we are up against and that He is ultimately in control.
He is eagerly waiting for us to fully surrender to Him because God’s got this!
God is concerned about what concerns us. The sparrow doesn’t fall to the ground without God knowing about it. How much more is God concerned about what is happening in our lives?!
I realised that I must constantly make the decision to trust in Him and live from a place of peace, because every day there will be a reason to worry or get upset.
BUT GOD’S GOT THIS! `
When we surrender to God, we can trust God in any circumstances that we encounter that God’s Got This!
Surrendering to God is giving back the control to Him. It is having complete faith in Him and belief in all the promises that He has made.
Matthew 17:20
“ if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”
When we finally let go of all the worries, fear, and anxiety we give God the room to wield His mighty arm in our lives.
Then we can overcome any situation and uncertainty, we can have victory, we can believe in deliverance, we can believe in healing – because we truly believe that God’s got this.
I still believe that my son will be one of God's amazing miracles
And I thank God for being with us every step of the way.
Please continue to pray for wisdom, strength and guidance AND
Start Thanking God for the complete healing that is already starting to take place.
God is bigger than cancer
God is bigger than statistics OR diagnosis
God is bigger than fear.
Where God is - there is hope.
God is the King of specialists, physicians, and professors.
It is:
God’s Timing, not mine
God’s Plan, not mine
God’s Glory, not mine
God’s Will, not mine
GOD’S WORD
Not this world.
Even though it took God seven days to create the universe, God took His time over nine months to create my son.
I find peace and comfort in knowing that God’s plans for my son is much bigger than I could ever comprehend or imagine.
Jeremiah 1:5
Psalm 139 :14
I praise you because I am fearfully and wonderfully made; Your works are wonderful; I know that full well.
I know that God’s got this.
Thank You LORD for NEVER LEAVING OUR SIDE.
(The videos below is our journey since he got sick in 2020)
If you would like to get in touch with me directly, you can contact me on elani.heystek@gmail.com
I would like to take this opportunity to thank my all my family and friends for being there for me, for all the understanding, patience, love, and support. I don’t know what I would’ve been able to do without you.
Thank you to my son’s school and the unbelievable amazing teachers and staff, each and every one of you are a truly a gift from God.
A special thanks to the community and for every person that has followed us, shared our story, who was able to donate, and every single prayer. There is so much power in prayer.
I would not have been able to go through this without any of you and truly thank you all from the bottom of my heart.
It really takes a village to raise a child.
All my love
Elani
Part ONE: 2020 - Our Journey with Neuroblastoma Cancer & Relapse
Part TWO: 2021 - Our Journey with Neuroblastoma Cancer & Relapse
Part THREE: 2021/22 - Our Journey with Neuroblastoma Cancer & Relapse
Banking details
Account holder name: Back Baileys Buddy
Account type: Transaction Account
Account number: 15542929349
Bank name: Discovery Bank
Branch code: 679000
OR
PAYPAL:
or Use the email: baileysbuddypaypal@gmail.com