7 March 2021
The Hotel
Firstly,
I would like to start off by thanking SIGNATURE LUX HOTEL FORESHORE, the General Manager and the exceptional staff @ 31A Heerengracht Street, Roggebaai Square, Cape Town, 8001.
Thank you for assisting us on such short notice, with sponsored accommodation for the week whilst my son was in ICU after removal of the tumour.
It was impossible for us to drive daily to be with him. The hotel was walking distance from the hospital, making it possible for my mom and I, to take turns, to be with him and try to rest.
If it were not for the generosity and kindness of everyone involved from the hotel, our “day-to-day” experience would have been too much to bear. As it is clearly depicted in the video only shear happiness and smiles. The modernised rooms, air-conditioning, extra-cleanliness, interior decoration, surprising opulence, extreme calmness right in the middle of Cape Town City, the daily menus and last - but not least – your amazing friendly staff always greeted us daily with the warmest smiles. Security personnel made sure we were safe when we returned every time.
Despite the reason we were there, our stay at your hotel, definitely made our week, the most memorable during this journey we are going through.
We will most definitely will be going back soon.
Readers of this blog: When you ever visit Cape Town (or Johannesburg), and not only need accommodation, but a home away from home, do not even hesitate to contact SIGNATURE LUX HOTEL FORESHORE on 087 688 0396.
The Hotel is situated in a convenient location in Cape Town City, close to all local amenities. Whether your stay would be for business or pleasure, you will certainly not be disappointed.
They also provide a free shuttle services from and to the Airport.
Secondly,
Thank you to each person who have donated until date. I wish that I could personally thank everyone individually. I would not have been able to cover our basic expenditures and keep the roof over our heads – a place that we have become to love so much, our home and safe haven.
The list of expenses is known to each parent: medical expenses, rent, electricity, petrol (travelling to various hospitals for treatments and test), clothing (especially now that winter is coming), food, etc. I would not have been able to provide all these required necessities, and to provide for my son - if it were not for you.
From the bottom of my heart, THANK YOU and may God bless you in abundance.
Thank you for all the messages, phone call and EMAILS! Wow. We are stunned by all the support by so many people.
I am so blessed that there are people across the world, who are praying for us and who are being touched by our journey. It is an enormous privilege to be able to have this platform to share it with you all. I hope with this post, I would be able to answer most of the questions ask.
Even though, I was not able to answer all the phone calls, please know that I take note of it and have read all the messages. These messages, gives us hope and encourages us to keep on fighting and reminds us, that we serve a living, loving God - especially during these unimaginable times.
With thát being said…
These last couple of weeks was tough!!! It was almost heart stopping, scary, daunting, awful, however so heavenly with the great, miraculous, and literally breath-taking miracles, which happened one after the other and sometimes even “at once”.
Going from one extreme to another; from 0 to 100 in 60 seconds.
Sometimes, I am too scared to cry, because it feels like if I would start, I will not be able to stop, (especially when I receive good news OR receiving medical statements and trying to sort them out whilst waiting to hear which account the medical aid will pay and which ones not. It is piling up – another nightmare.)
Other times, I was too tired to even cry and then think I will probably cry myself to sleep – but when I get to bed, I fell asleep before my eyes are even closed.
My son officially started with Gr3 this week too and we met his wonderful new teacher. Thank you so so much to his amazing school, the entire administrative team and to Mrs G (last year) and Mrs M for assisting and guiding me to home-school him. He is super stoked and excited to start. We both yearn for some sort of normalisation.
Covid-19 is really making it much harder, not being able to see family and friends. To hug them tightly, so that all the tears (whether for grief or joy) can find resting place amongst loving and caring smiles.
In these last couple of weeks, it felt like my “everything” got tested:
My patience…
My faith – definitely…
My body trying to see how long it can cope with barely any sleep – not on purpose
Oh, and my mind – my mind surely went on a journey of its own…
Have you ever found yourself, in a moment, searching for life’s “REMOTE” - trying to press “REWIND” button - just to ruminate on your past, the mistakes made or perhaps just to revisit a special moment to rekindle the memory?
Or to find the “FAST FORWARD” button – to forward past a traumatic experience like a painful divorce, life’s disappointments, Covid or this situation - called Cancer?
Maybe at times just want to “PAUSE” life – to catch up to your breath for when it becomes overwhelming, and it tries to take over your perception of how life was supposed to be?
OR to enjoy an amazing moment to ensure the memory is forever engraved?
Have you ever considered using the “RECORDING” button? You know – when you just want to quickly “RECORD” a new scene, rewriting moments only to challenge the status quo in all aspects of life?
I have found myself, a few of times, wishing for (CTRL) (ALT) (DEL) buttons just to start it all over…
But I have never really found myself searching for the “PLAY” button.
Especially not after everything I have gone through my life – again just trying to survive, yet yearning to thrive…
These were my thoughts on Monday 15 February 2021, during my son’s surgery to remove the malignant tumour.
Those six hours in surgery felt like an eternity.
So many emotions all wrapped up in each breath I took. I did not really want to inhale or exhale properly, as I was too afraid that I will explode.
6 Hours in Surgery
Prior to the surgery, we were informed that it was going to be a difficult operation to remove the tumour and save the left kidney.
After the surgery, the Professor walked up to us saying so calmly:
“We had managed to successfully remove all of the cancer and the glands around the malignant tumour. The left kidney was saved, but the tumour devoured the left adrenal gland – it was literally inside the tumour. The tumour was still massive and extremely close to the main artery.
It will take about 6 weeks for the wound to heal and about 3 months for him to be back to “normal”. The incision is 23 cm across his stomach horizontally and 13cm vertically.
He only has one adrenal gland now.
THE OPERATION WAS A SUCCESS!!.”
The histology report confirmed the tumour was 10 x 7 x 5 cm. Tumour was almost as big as a grapefruit. I saw the photos – it was ghastly. It would have devoured all the organs – if the chemotherapy were not induced.
These “leftovers” was only 1/3 of the original size of the tumour, which was then obvious– prior to chemotherapy started.
THANK YOU, GOD.
The theatre sister said:
"It was a sneaky tumour. It had us running up and down. As soon as we have it on one side -it slipped to another. It was huge. But we successfully removed the entire tumour.”
(She also was laughing, because they were all still humming the one line of the song that my son was singing going into theatre. The only line they could remember of the song: “I am so happy in a coconut tree 😉)
When he went into theatre, he was singing and laughing with such a fighting spirit (Figuratively & literally).
When I saw him the first time in ICU, with various tubes in his face and multiple drips in his neck and arms –
It was too much to really comprehend. Shocked and relieved at the same time - to see him just lying there.
It felt like someone literally ripped my heart from out my chest and squeezed it so hard, that the pumping transformed into a hammer pounding all the air out of my lungs.
Even though I was overwhelmed with all these emotions, I could still feel God’s presence. Every time when I closed my eyes to pray, I find His calmness in this storm. His love and guidance to give me strength. I am forever grateful.
All the medical professionals involved during that week, were so impressed with his quick progress. Even though there were a few scares, and at times, when the pain became too unbearable for him and anxiety kicked in.
Yet – he was still so brave and never lost his sense of humour, witty comebacks, and amazing personality! 😊
We left the hospital on Saturday 20 Feb 2021, a little bit stronger, definitely more tired, but extremely grateful and relieved - for these miracles and realised how blessed we are for the incredible work of the most amazing team of Professors’, various Specialists, Paediatricians, Nurses and Physiotherapists and an outstanding World Class Facility!
Thank You Jesus.
Monday 22 Feb 2021
GFR Test:
This is a blood test that measures how well your kidneys are working. Your kidneys have tiny filters called glomeruli. These filters help remove waste and excess fluid from the blood. A GFR test estimates how much blood passes through these filters each minute.
A radio-active (nuclear) pharmaceutical is injected. After exactly 2 hours, we must return for the medical staff to draw blood. Then you wait another 2 hours to draw more blood to conduct and finalise this test.
Results: compared to the previous tests, the chemotherapy did have an impact on his kidneys. The count decreased again – but it is still above average. The doctors are monitoring this.
Tuesday 23 Feb 2021
Audiology test results:
Compared with previous tests, he is starting to show minimal Sensorineural hearing loss.
Wednesday 24 Feb 2021
He completed his sixth round of chemotherapy.
In two weeks’ time, he will have another round of chemotherapy. I will then be meeting with a new Professor who is going to facilitate the stem cell transplant.
I am still awaiting confirmation whether the medical aid will pay for this – or not.
Update 9 March 2021
This morning I was informed that I have to upgrade from the current medical aid plan to a much higher plan to cover for the stem cell transplant and the rest of the treatment plan that he still needs to fight this cancer. During lockdown I had to downgrade the medical aid, from Bestmed Pace 1 to Bestmed Beat 2 (before I knew he had cancer) as I could not afford the higher plan any more. Now I need to upgrade to Pace 3 or 4 to cover the medical expenses that my son still need. This means that over the next 6 months (minimum), it will be between R 30 000 - R 42 000 more, over and above the current expenses that was never planned for.
Please note that since lockdown, I cut my expenses by more than half. I am not currently paying any of my debt. All of the money that I am receiving via the fundraiser is just to cover the minimum crucial expenses to survive each month (like food, electricity and petrol), pay for all medical expenses and to keep a roof over our heads.
I am waiting for exact confirmation whether it must be Pace 3 or 4 and if it needs to be back dated since there are a few accounts that is not being paid after the ICU hospitalisation.
Kindly click on photos below to enlarge.
Regarding the stem cell transplant
One for the questions that was asked multiple times: “Does he have a donor”.
He is going to get an Autologous stem cell transplant: Stem cells are removed from his own body before he receives high-dose chemotherapy or radiation treatment. The stem cells are stored in a freezer. After high-dose chemotherapy or radiation treatments, his stems cells are put back in his body to make normal blood cells. This is called a rescue transplant.
Thus, not via a donor - Allogeneic stem cell transplant.
My son is not yet aware of this – because I am still not 100% sure I understand what the 4 weeks in isolation will entail, nor the specifics about this procedure. After meeting with the Professor – we will tell him together.
Our journey is still far from over.
After the transplant, he still must go for more radiation and apparently, outpatient treatment afterwards.
Next week, he will also be starting therapy with primary palliative care interventions.
I am pleading to anyone and everyone who are able to make a donation, please please follow this link for the bank details.
No amount is too small and every little will definitely be going along way.
The Play button
How do I do this? Where and how to really find this?
I am so tired of trying to rewind and fast forward life. Postponing so many things because we always think we have more time. I found myself living in this weird bubble while life is passing me by and missing the blessings in each passing moment, for example when (see photos in video below) we were greeted by God’s paintings the Sunday before the operation and reminded me of a line in a movie:
“We paint with brushes, but God paints with a billion stars and a trillion galaxies – and HE knows our names and has a destiny designed just for us.”
Or
When, my son was in total awe of the skyscrapers in the city of Cape Town. It left me in tears, because of his sincere appreciating of us being able to be together in that moment, exploring a new adventure and making a new memory.
Or
When we got out of the car in the garage on the 5th floor at the hospital, the morning of the surgery -
My son saw the view and he said: “WOW. I now realise how small we really are in the universe and how big God must be?!”...
I realised once again, that how blessed I really am to be his mother and how much he teaches me more about life, love, being brave and resilient, not to lose your sense of humour and to keeping on smiling through the storms.
Most importantly to never stop praying and praising God through the good and bad times.
Reminding each other to learn when to rest but not to never quit.
TO be persistent, resilient, caring, courageous, compassionate, faithful, forgiving – but to also enjoy life. All these now have a new and different meaning to over lives.
To stop worrying or chasing after something…
To really live in the moment: the “here and now” - to your fullest potential.
One day in ICU, he was heavily medicated, yet in tremendous pain, and he started praying loudly and calling out to Jesus to help him.
In that moment I was able to take a really deep breath and exhale properly – as I knew that even in his subconscious, he knows that Jesus is his Saviour. Hope. Healer.
Wow – this is a mouthful. Where is that play button? …
Now I am Googling in my head:
“How to stop starting a sentence with poor little old me, myself and I”,
Where to find the Play button AND how to stop complaining”
The result:
“Pray!”
I realised, yet again, rumination, clinging onto the past, and to put my focus and worries on the future is basically failing to trust God.
When I put my focus on to God – I can focus on the here and now, and His plans and purpose for me (us).
When compared to Him – everything else seems so small.
Colossians 3:1-3
“Therefore, if you have been raised with Christ [to a new life, sharing in His resurrection from the dead], keep seeking the things that are above, where Christ is, seated at the right hand of God. Set your mind and keep focused habitually on the things above [the heavenly things], not on things that are on the earth [which have only temporal value]. For you died [to this world], and your [new, real] life is hidden with Christ in God.”
(Isaiah 43:18)
“Forget the former things; do not dwell on the past” (Jeremiah 29:11)
He says: "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."…
“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight.”
(Revelation 21:4)
“and He will wipe away every tear from their eyes; and there will no longer be death; there will no longer be sorrow and anguish, or crying, or pain; for the former order of things has passed away.”
Oh Lord Keep me in the moment
Show me what matters - Throw away what I'm chasing after 'Cause I don't want to miss what You have for me Stop my life from passing me
I can make a change and let You change me
Keep me in the moment
Amen
I will keep you updated after the next chemotherapy treatment, and when I know what the next step is.
Thank you for walking this journey with us. It really means the world to me.
Please take care, stay safe and always be happy in a coconut tree. 😊
All my Love
PS. Please see video below of the last couple of weeks and kindly ensure your sound is on.
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