I want to thank you for walking this journey with us.
Since this is going to be my last post, I’ve tried to write this post more than a dozen times.
I tried to use less words, but I am not a professional writer. 😊
I am not at all perfect and learning daily, I’m just a mother who can hardly fathom what has happened and still trying to process everything to be able to move forward.
I do however pray, that you might find HOPE in my message and our journey.
Please watch all the videos. Some will make you cry; some will make you laugh, but I pray that it will give you hope and courage to fight through battles you might encounter in life.
On 6 October 2020, my son was diagnosed with High-Risk Stage 4 Neuroblastoma Cancer.
By then the cancer already metastasized throughout his whole skeleton, into his bone marrow.
Now, a year later, my son’s cancer journey included the following:
9 Operations,
Was Hospitalised in 8 different hospitals,
7 Months intense chemotherapy in Paediatric Oncology,
After that, he was in ICU Haematology Isolation for 6 weeks where he received additional aggressive chemotherapy with extreme side effects,
He underwent a successful Stem Cell Transplant
12 Sessions of Radiation Therapy &
He is currently on the last stage of treatment which ends in January 2022
Whatever “diagnoses” you receive – FIGHT and never give up!!
John 16:33
“I have told you these things, so that in me you may have peace. In this world, you will have trouble. But take heart! I have overcome the world.”
My message of Hope
This post is long overdue. I know and sincerely do apologise for that.
With this last post, I also want to honour my son for his bravery, for if he ever wants to look back, it is only to see how far he has come and to be reminded of all God’s blessings and miracles.
I also answer everyone's questions. ;-)
Since my last post, everything occurred so incredibly fast. Some of the days are still a big blur, some we barely survived, and others we celebrated, praising God for His unconditional love and grace.
I faced so many crises and the constant battle of waiting for my emotions to catch up with reality became too exhausting, whilst trying just to get through the day.
I started to cut myself off from my loved ones, because talking ended up into crying.
So, I stopped talking. I regret that now and do apologise for that.
I thought, if I don’t talk about what is happening and ignore it all, my reality can’t be real.
I can’t be scared and then I will be OK…
But it was all so very real. I was scared and I was far from OK.
That was when fear thought it was a good time to keep me company.
Fear of the past and all the dangerous devastation and destruction that came with it.
The fear of what I was facing in the moment.
And then of course, fear tries to find its way into the future and the unknown…
The enemy constantly trying to steal from, whether it is our health, peace or happiness.
Even though I knew that fear does not come from God – I battled to look pass the loss and the pain.
There were so many times that I just felt numb and weak.
I could only see the crises and would plead to God to PLEASE take us out of it now, but at the same time I still wanted to be in control.
I felt so hopeless seeing my son extremely sick and in excruciating pain, but there was nothing physically that I could do to take it all away, because in my own strength, there were only weakness.
When I started reaching out to my friends and family during these last couple of weeks, I learned how this year have changed them and why.
We are all going through our own crises and facing our own “cancers” in some form or another.
Whether it is through:
Covid
Divorce
Retrenchment
Death
Suicide
Cancer
Feeling lost or isolated
Depression – struggling with mental health
Abuse – whether emotional or physical
Dreams and plans that got shattered
Sense of Loss in so many different ways...
Everyone is so desperate for answers and searching for ways to cope.
I have come to realise; it is NOT what we are going through but rather HOW we are going through it.
When we find ourselves in a crisis, we pray to God to take us out of it.
When we are weak, we ask for strength.
In the Bible we learn:
Although the heart of the righteous is broken and their spirit crushed, they experience God’s nearness within the crisis’s situations:
Ps. 34: 17-20
The Lord is near to the broken hearted
The Lord also rescues them from troubles
God protects the righteous so that not one of their bones will be broken
What does it mean?
If God protects us, isn’t He supposed to protect us before the crisis even start?
Before the devastation begins?
Before we are forced to become warriors and fight to live another day?
It is in our human nature to want to be in control, believing that we can do it all in our own strength.
The Me, Myself and I tend to exalt oneself.
Or at times we become depressed and allow anxiety and fear to control us.
Sometimes the crises or loss is way too big for us to manage or to comprehend, we give up or stay stuck in the past, because we cannot overcome any of the trauma.
So, we want an “easy way” out of it.
When we face cancer or a crisis – there is no easy way out. No quick fix.
During the time when my son was lying sick and motionless in the bed, we were “stuck” and isolated in a small ICU room. He became sicker but the world around us just kept going.
I gave up trying to think why we are in a never-ending storm.
When I couldn’t continue anymore – I eventually let go and let God.
I understand now that I must acknowledge the pain, deal with the physical and emotional side effects and turmoil we are facing still today, and fully trust that God will lead us through this.
When we pray and God does not answer immediately, we think He is not hearing us.
We tend to forget that He does answer our prayers, but in His time Not ours.
God is good. God is faithful. He sometimes won't change our circumstances, but He WILL change you.
Redemption lies inside (during) the crises and not outside of it.
The only way to the other side of the crises is through it, but we cannot do any of this without God.
We must not let anything prevent us from humbling ourselves before the love of Jesus and confess our need for Him.
God will honour those who humble themselves before Him.
James 4:10
Humble yourselves before the Lord, and He will exalt you.
2 Tim 3 10:11
“… all the persecutions I endured, but God rescued me from them all.”
Mark 14:36
He said, “Father, You can do all things. Take away what must happen to Me. Even so, not what I want, but what You want.”
It does not matter what crisis we are facing; we need to surrender to Him in order to be redeemed from ourselves first and to find our identities in Christ.
Then in our weakness and inadequacies, we can discover the Love, Mercy, Glory and Power of Jesus Christ.
God’s divine Grace is sufficient for us, because when we are weak, we draw from God’s strength.
2 Corinthians 12:7-10
or because of these surpassingly great revelations. Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
In the Bible, Paul said, because he went through the crises, he found salvation – from himself.
He knew that Jesus was in total control and He is our refuge and strength.
God is greater than our enemy, fears, anxiety, covid, sorrow, cancer OR crises.
Paul teaches us about the paradox set before us with the cross of Jesus. The cross challenges our values, our ways of seeing the world.
We value success, education, power, wealth…
But God values, humility and weakness, because His love and power were made known through the suffering, death and resurrection of Jesus.
The cross, furthermore unleash the transforming power and presence of the Spirit to empower Jesus’ followers to take up His cruciform way of life and make it their own.
So
When the world seems out of control and feels like it’s about to fall from its own axis,
Fear normally comes knocking on your door, hauling a crisis up the driveway.
Ensure to Look to the One who was, is and will always be in control &
Do not grant fear any space in your mind or life. Take action:
F.E.A.R + Cancer = Hope
Face Everything And Rise – in God – doesn’t matter what your “cancer” or crises is
Because where God is – is Hope.
“If God is for us, Who can be against us.” Rom 8:31
ONE LAST THING…
“True healing doesn’t mean erasing the existence of hurt. It means the hurt no longer controls you, your emotions, your relationships, or your mental health.” Dr Caroline Leaf
During all the chaos, and trying to find our feet, we tend to not prioritise our mental health.
We were not made to be alone and try to figure this out all on our own.
It can become a very confusing and anxious place to be when your sense of security has been taken away by a crises or trauma.
Take care of yourself and your mental health.
Reach out to somebody – it is OK to ask for help. One day at a time. One step at a time.
Surround yourself with people who have the same values and believes.
Hebrews 10:22-25
let us draw near to God with a sincere heart and with the full assurance that faith brings, having our hearts sprinkled to cleanse us from a guilty conscience and having our bodies washed with pure water. Let us hold unswervingly to the hope we profess, for he who promised is faithful. And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another—and all the more as you see the Day approaching.
Matthew 18 19-20
“Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.”
Proverbs 17:17
A friend loves at all times, and a brother is born for a time of adversity.
Change your perspective from a place of loss to a place of abundance – because we are surrounded by so many blessings.
Your environment matters. What we do matters. What we surround ourselves with matters.
You are important and you matter. Your feelings matter. Your story matters. Your life matters. Always.
We cannot continue doing the same thing and expect different results.
Get out of your comfort zone because I promise you nothing ever grows there.
Please Do not ever give up and remember that the “fight” is not against flesh and blood but against the spiritual wickedness in high places.
DO NOT UNDERESTIMATE THE POWER OF PRAYERS!!
Philippians 4:6-7
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Ephesians 6:12
For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.
Thank you, God, for the Miracles, Love, Blessings and Grace that You have bestowed upon us so that we can share my son’s testimony.
Thank You for leading and guiding us when we could not see.
Thank You for being beside us and blessed us with Your presence.
Thank You Jesus, for carrying us and giving us strength when we were on our weakest.
I know that the biggest test of faith – is waiting but
Thank You God for Your patience, Thank you for knowing our hearts and hearing our prayers.
Update since my last post on my son and Bailey ;-)
Post Stem Cell Transplant
My last post, Stem Cell Transplant, ended whilst we were still in the Haematology ICU Isolation Ward just a couple of days after the successful Stem Cell Transplant.
(Shortly afterwards, my phone fell and broke.)
At times I did not recognise my son. He became sicker and his pain more excruciating. The side effects of the chemotherapy and everything else did not want to leave his side.
Panic quickly set in.
I have never felt so hopeless in my life. Seeing your child so pale and lying motionless in bed, a body covered with cuts and bruises, makes you feel and think unimaginable things.
We had good moments and worse moments all mixed up in one day.
He developed a fever due to an infection which caused continues vomiting and diarrhoea.
He experienced headaches that made his back involuntary arch backwards screaming in pain, and at time the morphine did not help.
He had frequent blood and platelets transfusions.
His BP started to drop to 50/30.
Developed tachycardia which was very dangerous on top of everything else he had to endure.
He had neutropenic sepsis and the mucositis preventing him from eating.
He struggled to breath and developed rash all over his body.
More Xray’s was taken and a CT Scan.
A lot of physiotherapy because he was bedridden for so long.
The list just goes on.
The alarms of the monitors that went off constantly where a reminder of our new reality.
When you wake up in the morning, and your eyes panickily searching to see if your child is still breathing, really changes your prospective on life and what is really important.
I realised that I was never in control, and you truly understand the meaning of what it is to be grateful …
Most of these days are still just a blurry nightmare, but I believe it was when God picked us up and carried us through it.
During this nightmare, daily crises and new diagnoses added daily, we received incredibly good news late one evening.
WE GOT A NEW HOME and were able to move in immediately.
Incredible and amazing news! Thank you, Jesus.
With the help of phenomenal friends, our entire house was packed within 24 hours and my mother was able to move into our new home whilst we were in isolation.
It was one colossal win for us especially after what transpired in the previous 48 hours.
Thankful, grateful, and relieved does not even begin to describe how I felt.
As days went by, we waited and prayed for his blood counts to rise.
Due to the high doses of adrenaline administered for the extremely low blood pressure, he was completely bedridden for two weeks. This of course added to his frustration.
We prayed more and waited longer.
Until one morning, when I woke up to a kiss on the cheek and this smile:
The nurses helped him out of bed, and he walked his first few steps in 2 weeks
As the time passed, his blood counts started to increase.
TPN feeding was reduced, and the nasogastric tube was removed.
It took a very long time for him to regain an appetite.
Extremely grateful and blessed, we were excited to go home to our new house. Our new home.
Nothing could have ever prepared us for those 6 weeks, but we knew going home was just because of the grace of God and the miracles with which we have been blessed.
Corinthians 10:13
God is faithful; He will not let you be tempted / tested beyond what you can bear.
But when you are tempted, He will also provide a way out so that you can endure it.
Please watch the video until the end ;-) and continue to read
New Home
Coming home to a new house was a bit of a mental adjustment especially after all the traumas.
My mother went out of her way to make the house feel like home and Bailey was over the moon to see my son. Bailey has still not left his side.
I am so grateful for the fact that my Mom was here to help, I don’t know what I would’ve done without her.
Our first night in bed, we struggled to fall asleep because it was so very quiet.
We were waiting for the monitors to go off, or the nurses to come in.
Just before falling asleep, my son said:
“Mom, it feels like we just woke up from the worst nightmare. I can’t remember everything, but I know it is over and I am safe now.”
That is exactly how I felt. I could not stop crying.
The following week, he went back to theatre for the removal of the Hickman Line.
The Oncologist also informed me that he must start Radiation Therapy.
I felt a bit hesitant to continue with the radiation since his body had already endured so much.
The Oncologist assisted me in getting a second and third opinion.
The third doctor was a Paediatric Oncologist in Europe, that specialises in Neuroblastoma.
He was very interested in my son’s prognosis, because of the extreme severity of it and explained in finer details how severe his initial diagnosis was and believed that everything that had happened was a miracle and that we have come so far.
After an hour and a half zoom meeting, I took the advice of all the specialists involved, and we proceeded with the radiation only a couple of weeks after he was discharged from isolation.
Enjoy the video.
PS. (I do not know what he always has his PJ’s on in most photos in all the videos)
Radiation
As part of the planning and preparation before the Radiation Treatment, the specialists do a CT scan first. The Paediatric Surgeon left surgical clips inside my son’s body, to indicate where the original tumour was. They tattooed various dots on his torso to ensure laser beam matches up precisely before radiation can start.
These CT Scans presented no tumours, but we will be able to confirm this only in January with thorough MRI and MIBG scans.
Due to the protests, we had to wait an extra week before he started with the radiation.
Over a 2-week period, my son successfully completed 12 sessions of Radiation Therapy.
The radiation made him very tired, nauseas and uncomfortable, but my warrior truly came through this crisis with flying colours.
He entertained the staff and the other patients, mostly adults, everyday – leaving them all in laughter and some in tears because of his positivity and contagious smile.
My son always wanted to wear a proper suit and a tie.
On his last day, we were blessed with an awesome suit from Keith Suit Hire. Thank you, Ricardo Carelse, for all your help in making this day so special.
We made 100 cards which included a special message and handed these out together with chocolates to the staff and patients at the hospital and in the radiation ward. (Please see photos in the video below).
We were also blessed with this beautiful cake from O Aarde Speciality Bakes to celebrate his last day of in hospital treatment.
Thank you so very much Michelle.
Thank you to the wonderful Radiation staff. You are really special kind of love.
Last Step of Treatment
Shortly after he completed the Radiation, we met with the Oncologist.
He started with the last step of the treatment; tablets taken orally twice daily. These tablets kills off any remaining cancer cells.
This medicine is very strong and has its own list of side effects: Nausea, headache, loss of appetite, nose bleeds and it has a severe effect on his skin, therefore he takes it twice a day for two weeks and then rest for two weeks before continuing again. This will be for six months.
The Oncologist is monitoring him closely once a month with blood and urine tests.
In January 2022, he will have completed all the treatment protocols, and we will do another MIBG and MRI scan to confirm that all the cancer is gone.
The Oncologist gave us permission, to visit our family in Pretoria. Thank you to the individuals who made it possible for us to travel to Pretoria. I really can not thank you enough.
It was on such short notice, but we were privileged to see them for the first time in two years.
Throughout this horrid cancer journey, reuniting with his cousins was one thing that he really wanted and needed. Before the cancer diagnoses, and when Covid started, we did not know when we will be able to see them again.
Despite his desire to be with the family and fighting new side effects of the new medicine, my son still put a lot of his time and energy into his schoolwork, attempting to catch up on the 3rd term’s work so that he would be eligible for a report card – also something that he wanted to obtain for some sort of normality.
Even though he has not been in school since March 2020, he takes every opportunity available to him, to learn.
As soon as we got back, he was assessed, and I am very proud to say that he did extremely well.
We miss them already so much.
Happy Birthday
Last year, we had to cancel his 8th birthday party, 27 September, as he was too sick.
A week after his 8th birthday he was admitted to hospital…
I am extremely happy, blessed and grateful to share with you, we were able to celebrate his 9th birthday with our friends who became our second family here in Cape Town.
A huge Thank You to Stellenbosch Flying Club, Megan Burgess, Emil Wissink and all the other special people behind the scenes for making this such an amazing memorable day. You really went above and beyond to make him feel special.
A day that is forever engraved in all our memories, reminding him that his dreams can take flight.
“Give your dreams the wings to fly
You have everything you need
If you just believe”
Thank you O'Aarde Cakes for this amazing cake.
What’s Next?
We are still trying to figure it out.
We are slowly adjusting to the new normal and find a new routine.
He is excited to be doing a lot of more schoolwork, and although his body is still recovering, he yearns to be a nine-year-old boy again, playing outside with his friends with no pain, exploring in adventure.
I, on the other hand, whilst trying to process these last 18 months mentally and emotionally, is focussing on finding ways to get my Recruitment company back on track.
Please pray with me for guidance.
One thing that is for sure, whatever tomorrow brings, we know that Jesus is already there.
A new beginning in every possible way. We are extremely grateful for everything and all the support, love and care that we received this last year.
Please share as far and wide as possible.
THANK YOU’S
In no specific order, I want to use this opportunity to give thanks from the bottom of my heart:
1. Christo, SAPS Captain Erica and especially Captain Anneke for keeping us safe. Thank you, Captain Anneke, for going above and beyond in measures that you took to ensure our safety. You are truly one amazing soul.
2. To each and every person, who prayed for us and for sharing this blog far and wide. I hope that this is another testimony of the power of prayers. You are part of all the miracles. Thank you for never stop praying, believing, understanding, loving and supporting us.
3. For each person who have donated toward the Back Baileys Buddy fund. Thank you! Without these donations and the fact that I was not able to work since March 2020, therefor not able to generate and income for the past 18 months, I would not have been able to provide for my son, pay any of his medical needs and keep a roof over our heads.
Our journey is not over yet, and his medical needs are still accumulating. It will take a couple of months (especially this time of year) before my company is billable and I will be able to generate an income.
4. To Mrs M, Sue, his AMAZING School and the community – thank you for supporting us in so many ways since he got sick. Thank you for all the love and care.
Mrs M, thank you so much for your patience and your guidance throughout the year. I don’t know what I would’ve done without you!!! We are extremely blessed to have you all in our corner. You are all special angels send from above.
5. To Lynette and Theo van Houten from GOD is LIG, thank you the spiritual guidance and support this last year. For teaching me how to surrender and reminding me that God is in total control. For EVERYTHING that you have done for me even before he was diagnosed but especially on that specific day -thank you so so much.
6. Riekert Botha for all his sermons and guidance.
7. To Jammies and Drikie, thank you for going out of your way to helping us. You are angels send just for us. From the bottom of my heart thank you so very much for everything. I honestly don’t know what we would’ve done without you.
8. To all the wonderful specialists, the Oncologist, Haematologist, the Paediatric Surgeons, the amazing nurses at all the 8 different hospitals, especially the team in the ICU ward – (they are a special kind of love. I take my hat off to you all.) Thank you for everything that you have done to save my son’s life.
All the administrative staff working with the specialists and of course the team at Bestmed and Curemed. Thank you, Amy, Ronette and Lynette for all your assistance and patience.
Thank you for always trying to make this journey a little bit smoother.
Thank you to Nurse Natasha from Ampath for assisting with the numerous Covid and blood test.
9. Thank you to Reach for a Dream for gifting my son with a PlayStation. It was such a huge gift and it definitely helped to get him through lonely days.
10. Thank you, Michelle, @ O, Aarde Speciality Bakes | Facebook for the two amazing cakes to celebrate two very special occasions.
11. Thank you, Ricardo Carelse from Keith Suit’s Hire, for the making him feel alive and like a true gentleman. HOME (keithsuithire.co.za)
12. Harvest Table contributed to his new dietary and supplements. Thank you so much for walking this journey with us.
13. Thank you, Stellenbosch Flying Club, Megan and Emil, for celebrating his 9th birthday in a spectacular way, making him believe in dreaming again.
14. Thank you again for Signature Lux Hotel, enabling me to be close to him during his big surgery.
15. Thank you to Philip Snyman and the RSD Rugby earlier this year. Meeting his hero again changed his life forever.
16. The NSRI for making him feel free during intense chemotherapy. Thank you for this special day.
17. Schalk Brits, thank you so very much for the personal message that you send him.
18. To the most amazing friends and families that we have met over the past year, who are fighting their own cancer journey. You changed our lives forever and we are truly grateful for meeting each and everyone. Cancer is a thief that tries to steal almost everything from you. Whether it’s your live, time, money or peace. It takes what it can, if not from the patient, then from everyone else around him/ her.
To everyone that is still fighting cancer – keep fighting and focus on Jesus.
May Jesus keep you safe and bless you with His presence. May you find your strength in Him to fight this uninvited thief.
I am so extremely sorry that you are going through this.
In remembrance of the brave warriors that is not with us today
You did not lose this fight – you completed your part in the race.
You did not fail – the treatment failed you.
You are honoured. You are so terribly missed. You are loved and you are never forgotten.
19. Last – but definitely not least
Please forgive this generic message, but also for the risk of accidently forgetting a name
Thank you to THE most phenomenal family and friends. I know you know who you are!! 😊
Thank you for being there – always.
Thank you for reaching out – even though it took ages for me to return a message (and still have to).
Thank you for never stop praying, believing, understanding, loving and supporting us.
Thank you for always being there – no matter what.
To my incredible Mother, thank you for helping and being there for us every step of the way, without ever complaining. Thank you for helping me grow and helping me up when I could not stand anymore. I am forever grateful to have you as my Mom. Thank you for NEVER stop praying, and believing.
I don’t know what I would’ve done with out you all. From the bottom of my heart - THANK YOU SOOO MUCH!
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight. Proverbs 3:5-6
Let Go and Let God
Love and you all
Elani
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