Part ONE
16 May 2021
It is already May 2021.
This means, it has been 12 months since my 8 and a half years old son became sick.
Today, we are 8 months into treatment, since he was finally diagnosed with High Risk Stage 4 Neuroblastoma cancer, after numerous misdiagnoses.
By this time, the cancer already spread throughout his whole skeleton into his bone marrow.
I am overwhelmed with everything that has happened this past year and with all the life altering decisions I needed to make and will have to make, alone - as a single mum, sole provider and caregiver for my son.
I am grateful for my family, friends and my son’s school for helping me out as much as possible and where they can.
Also, I am grateful for the team of specialist Doctors, Professors and the amazing Nurses that are working together, fighting for my son’s life and for the various administrative employees.
The impact that Covid and lockdown had on my business, has left me in immense financial and emotional distress.
It has been 13 months since I was able to generate and receive income.
I will need to start my business up from the ground again and invest finances, time and effort to get it back to the point where I was before Covid hit.
Those who knows me, know that I am a hard and diligent worker and have always loved my work - it is my passion and not just a job.
Since my son became sick (and especially the last 8 months), being in isolation with my son in the hospital and attending to his need, fevers, nausea 24/7, it has been practically impossible to work, answer calls, attend meetings and put the effort in to running my company successfully the way I did before Covid and for the past 10 years.
On an operational level – I have so many obstacles to overcome before I can even begin to work.
I had to cancel all my service providers as I could not afford to pay them anymore. (Even my email domain is deactivated.)
I had to let my employees go.
Even if I were able to start working again today – it would take my company months to generate income again.
When I started the blog for Back Baileys Buddy, the intention was to use it as a tool to keep everyone updated on our progress, as well as to raise funds
We were extremely blessed, to have received donations over the months and for that I am eternally grateful – THANK YOU!
Although we have come extremely far – our journey is still far from over.
We are currently in ICU isolation for the stem cell transplant.
Following this, he still needs to receive radiation therapy, and six months outpatient treatment.
When all these cancer treatment protocols are completed, my son would still need medical assistance from a clinical dietician nutritionist specialist.
He only has one adrenal gland. The original tumour completely destroyed his left adrenal gland and it was removed during the operation when the tumour was removed.
Post operation, he has low blood pressure and low potassium levels (which provides its own list of side effects and problems.)
Because his left adrenal gland is removed – it may cause:
Excessive cortisol levels that will have an impact on his weight
(He has already picked up 10 kg since he was diagnosed and during the chemotherapy)
Hormone imbalance
Infections
Diabetes
The strain of all the uncertainties in terms of my son’s health, all the financial implications and the fact that we have to move out of our rental house in 2 months’ time, is taking its toll on my own health, as you can imagine.
Due to the accumulated stress, I have developed constant headaches, insomnia, chest pain & heart palpitations.
Every day is a constant battle. It feels like I am facing giants of overwhelming unbelief.
(Please listen to the words of the song in the video above)
Although I am at my son’s bedside all day and night, my time is mostly taken up on the phone by:
Trying to raise funds whilst I cannot work;
House hunting to relocated before July 31st
Battling with medical insurance over unpaid bills to Doctors and Specialists:
Since my son’s diagnoses up in till 31 March 2021 his cost of treatment is R1, 200,000.
This excludes the Stem cell transplant and everything else from 1 April 2021, as we are still awaiting the bills.
To date, medical bills not covered by the medical aid, is almost R100 000.00 and loads a really huge and added burden onto me.
A lot of time is spend on sorting out these accounts and trying the get the medical aid to pay them in full.
If these processes are unsuccessful, I would be personally held responsible for the payment of outstanding invoices.
The financial toxicity is taking precedence over the cancer AND my son.
Yesterday morning, after an extended phone call I had to take regarding our financial needs, I walked back into his hospital room.
He was bending forward in the bed, crying and vomiting.
When I tried comforting him he said:
"Mommy, I’m not sad because I’m throwing up. I’m sad that I’m doing it alone." – (because I am most of the time on the phone – mostly for financial reasons.)
I broke into a millions pieces.
At night, I cry into my pillow so that my son doesn’t hear me, whilst I pray for strength, guidance and wisdom.
But it is in the mornings when I wake up and hear: “Good morning mommy did you sleep well?”, that I can see the Hope that I am praying for, radiating through my son’s smile.
It’s then when I feel His presence.
I know it is only by the Grace of God that I am still standing to fight another day.
We do find rest and comfort in God, knowing He is ultimately in control.
That is worth fighting for…..
It is becoming humanly impossible to face and fight these giants on my own and I am reaching out, again, for help. Please.
I have reached a point, where I will not be able to cover the medical expenses, provide for any of my son’s needs, (especially for my son’s special dietary needs), keep a roof over our heads and for bare necessities just to survive.
(I will not be able to do this from this month, and the months to follow until I am able to work again.)
My sincere and desperate request is for the following:
Assistance in managing a Fundraiser Project for my son or
Reaching out to NGO’s, churches, corporate companies or individuals for possible donations, or
Share ideas or guidance how to help me get through this season
Sharing this post with your family and friends and please ask them to do the same.
PLEASE get in touch with me at elani.heystek@gmail.com should you require additional information from me.
EFT:
Account holder name: Back Baileys Buddy
Account type: Transaction Account
Account number: 15542929349
Bank name: Discovery Bank
Branch code: 679000
Or
PAYPAL:
Use the email: baileysbuddypaypal@gmail.com or the link below
I thank you in advance for your support and continuous prayers.
STEM CELL TRANSPLANT
(Kindly see videos on top & below – photos of our journey since last post.)
THE WEEKS LEADING UP TO THE STEM CELL TRANSPLANT WITH THE HAEMATOLOGY SPECIALIST TEAM.
As per my last post, my son was hospitalised for three days and completed his seven months of chemotherapy treatment with the oncologist and we came home on 19 March 2021.
A week after that we, were informed that we must vacate our current rental home by the end of May 2021. It was later moved to end of July 2021.
I still do not know how or where we are going to move to.
On 7 April, my son went for:
More blood tests
Covid tests
An in depth cardiac assessment, to determine if his heart would be able to withstand the Autologous Stem Cell Transplant that he needs as part of the treatment program to fight the Neuroblastoma cancer.
(Autologous means stem cells that are used from his own body.)
According to the statistics:
The 5-year survival rate for High-Risk Stage 4 Neuroblastoma is 30%.
60% of patients with Neuroblastoma will relapse.
Once in relapse, the survival rate drops to less than 5%.
High-dose chemotherapy with autologous stem cell transplantation had a better long-term outcome that increases the survival rate compared to only maintenance chemotherapy.
A cancer cell smaller than 1cm cannot be seen or detected by any test or scan.
During the stem cell transplant, he will receive more intense chemotherapy to kill any other remaining cancer cells.
On 8 April 2021, the chemo port (that was placed under his skin for the chemotherapy in October 2020) was removed and the Hickman line was inserted in the theatre.
(A long tube that is placed into a vein in the chest and ends in a larger vein just above his heart. This is hanging on the outside of his chest),
11 April 20219
He was admitted for intensive chemotherapy in the ICU Haematology ward for 3 days.
18 April 2021
He started with injections at home, twice a day to increase his stem cells count.
He was supposed to be admitted for harvesting of his stem cells on the Sunday 25th April, but he developed a fever and was admitted on the 22th for intravenous antibiotics.
We did not go home.
Early Monday morning, 26th April 2021, he went to theatre for the insertion of the femoral line (under anaesthesia) to be able to harvest the stem cells.
There was a complication during surgery and a 45 min procedure was extended to 2 hours.
The harvesting of the stem cells was quite interesting. The machine was connected to his femoral line, as the blood was pumped into the machine.
The machine harvested the stem cells from his blood. After the stem cells were harvested in the bag – the rest of the blood went back into his body.
After about an hour into the harvesting of the stem cells, out of nowhere, his hair started to fall out.
This was a huge shock to us both. So unexpected.
Keep in mind, even during 7 months of severe chemotherapy, his hair actually grew back thicker and curlier than before. He was so proud of his new wavy “hairdo”.
It was not really about the hair itself – but more about the fact that this was the one thing that cancer could not steal from him. One thing that he did not lose…
The more it fell out, the braver he tried to be. Initially he still did not want to cut it, but the hair just ended up all over in the bed, in his mouth and eyes and finally asked if we could shave it off.
When he burst into tears – I could not hold back mine and the room was quickly filled with a multitude of emotions…
He always tries to stay strong, by wiping off his tears to give me a smile.
I am extremely grateful that after a couple of hours, the HARVESTING OF THE STEM CELLS WERE SUCCESSFUL.
Later that evening, he went back to the theatre for the femoral line to be removed, under anaesthesia.
We went home on Wednesday afternoon on 28th April.
On 2 May 2021, we were admitted again in ICU Haematology ward for 4-5 week in protective isolation (to lower the risk of getting an infection) in hospital during the stem cell transplant.
From 2 – 9 May 2021 – he had more severe chemotherapy each day with the most awful list of side effects.
The high-dose treatment kills cancer cells, but also eliminates the blood-producing stem cells that are left in his bone marrow.
On 5 May, Wednesday morning, I was informed that my son urgently needs two white blood cell donors.
Test results presented a bug in his gut that is extremely resistant to antibiotics that can’t be killed. They call it a superbug and when it enters the bloodstream it becomes life threatening.
Due to the intense chemotherapy, his immune system is dangerously low because chemo kills the white blood cells too. His body is not able to defend itself from infections. Soon his white blood count will be 0.0. It was indicated that it was extremely urgent.
The first protocol when test results present this particular bug in a life threatening moment - is to take the extreme action.
In this instance, it was to get white blood cells donors.
This is quite an extreme and rare process to do. It is not like donating bone marrow (thus a database full of donors) or normal blood donations at the blood bank.
Donors need to get tested to see if they are a match. The two matched donors would have to take two Covid tests each.
If Covid tests are negative, they would be admitted into hospital for 6 days.
A femoral line would be inserted in their groin, and they would have to be on “bed rest” for the week.
The white blood cells would then be harvested from their blood every alternative day.
It is quite an expensive process too and was still waiting for confirmation from my medical aid if they would pay it all.
If not – I will be liable for all the expenses.
Whilst, my sons’ team of specialists were working closely together with the laboratory to do more tests and investigations, I was on the phone the whole day reaching out to all of you.
I was overwhelmed with the number of responses received during that day.
People that don't even know us – wanted to help by donating.
I sat until 3 am, the following morning to answer messages.
I honestly do not have any words to describe what happened that day.
The following morning, the Professors informed me that they found another alternative way to deal with a life threatening situation but more tests needed to be done.
I was confused and overwhelmed. I could not stop crying because nothing was making sense.
The only thing that did make sense for me out of all of this – is the fact that I again can see God’s hand protecting my son again - despite the medical “odds” .
Another miracle!!!
A detailed medical explanation was given to me, but to the short version is:
After extensive tests were done, the conclusion was:
For now, he is stable
Because he did not present any fever – it means the bug is still in the gut and has not entered the bloodstream.
The bug cannot be treated in the gut
When the bug enters the bloodstream – this is when it will become life-threatening, but also only when they can treat and kill it.
The chemotherapy can damage the intestinal wall or make it extremely thin – giving the bug easy access to the bloodstream
They are monitoring this extremely closely and is ready to take action when this should happen
All donors are on standby
This is still a very scary thing to worry about on top of everything else. It is making me anxious to know that there is now another thing threatening his life. I literally can’t handle this one too.
So now we pray. We believe. We surrender to God.
Monday, 10 May
It was his “rest day” before the stem cell transplant. A day without chemotherapy.
A rest day allows time for the chemotherapy to work and then leave your body. This is so there will be no trace of chemotherapy left in your body to harm the newly transplanted stem cells.
It was also the day that most of the side effects and symptoms became worse
· He had blood in his urine causing excruciating pain
· Developed mouth sores
· He is neutropenia
· Continuous vomiting than became awfully worse so they started intravenous feeding
· His whole body was in pain and becoming more exhausted.
Tuesday, 11 May
STEM CELL TRANSPLANT DAY. – DAY ZERO
I did not know what to expect.
Due to the lack of sleep previous night and all the symptoms he experienced, he was asleep for most of the day.
I cried the entire day
The stem cells that were collected were transplanted back into his body under the supervision of the Doctor. The bag with the stem cells was connected to his Hickman line.
This will allow his bone marrow to make new blood cells.
During this waiting period, the old blood cells will die and the blood counts will drop to their lowest levels.
While we are watching and waiting until his blood counts recover, we pray & believe & surrender to God.
Wednesday 12 May – DAY ONE
· He is anaemic and had a blood transfusion
Thursday 13 May – DAY TWO
On top of the list of side effects he already has, he experienced:
· Extreme pain in his back and spine
· Diarrhoea
· He is still on intravenous feeding and is starting to lose weight
· His white blood cell, red blood cell, and platelet counts are starting to drop (this is to be expected.) this morning his white blood count is 0.7 and continues to drop
· Risk of getting an infection will be high
· He barely has an immune system now and is extremely tired.
Friday 14 May - DAY THREE
· Sores in mouth and throat worsen - making it difficult to swallow
· Difficulties breathing
· Started with physiotherapy to relief some of the pain
Saturday 15 May- DAY FOUR
· Had a Platelet transfusion
· Can barely swallow now
· High fever started
Sunday 16 May – DAY FIVE
· Continuous of High Fever
· Still on intravenous feeding
· Today they inserted a nasogastric tube
· Vomiting blood and has nose bleeds
· On morphine and various antibiotics
· Received another blood transfusion today
· EXTREMELY LOW BLOOD PRESSURE. Late this afternoon, they started with adrenaline to prevent his BP falling too low.
I don’t know how long all of his treatment is going to be or when we will be able to go home for sure.
I don’t know when he is going to be healthy again, so that he can ride his bike and play outside with his friends again.
(ALL that he would like to do is to go back to school, take part in all of his favourite sports, and enjoy life outside of hospital.)
To live life to the fullest - just as a little boy should be able to do.
I also don’t know when I will be able to start working again to generate much needed income.
But what I do know…
Even when we are facing these giants of unbelief –
Without any doubt – we will raise a Hallelujah in the presence of our enemies.
We WILL Raise a Hallelujah louder than the unbelief!!!!
Every day I will give praise and glory to God for his unconditional love and protection.
For the miracle He is busy performing with my son.
** Photos in videos below were from March up and till this week. Kindly ensure Sound is on.
Wait for the incredibly special message from Schalk Brits at the end. Inspiring and motivating him.
Schalk Burger Brits is a South African former professional rugby union player who last played for the South Africa national team and the Bulls in Super Rugby. He primarily played as a hooker. He was part of the 2019 Rugby World Cup-winning team
Thank you for all the prayers, love and support.
Part TWO