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Writer's pictureBailey Buddy

Test Results Are In!!

Updated: May 30, 2022

Scientifically proven miracle has taken place. and it is my honour and privilege to share the following:

{Please keep in mind when reading this post – I am just a mom, sharing our journey and pleading for help. I am trying to stick to only the facts but ending up sharing some of my thoughts and emotions too.}


11 February 2021



In October 2020, 4 days after my son was diagnosed with this horrid cancer, I took this picture when we left the one hospital to go to another.

I was sitting in the back of the car holding him tight when I read the sign:

STOP!

"May God go with you”.


Tears were running down my face – how am I going to do this?

My mind was all over the place. I was asking myself a 1000 What’s? Why’s? How’s?

Time after time again – after asking the doctors the same questions during that week.

I was so confused.


I was thinking about the last time I was in the back of the car with him, leaving a hospital on our way home: It was when he was born.

But on that day, when I took the picture, we were on our way for his first chemo treatment.

I could not utter a word just praying over and over: “God, please help me.”


When we met the Oncologist for the first time, she tried to explain to me the diagnoses and treatment plan– with so much kindness, patients, and humility. She had to lay down protocols, stadiums, various choices, prognosis and what we must expect to follow post diagnosis and what the diagnosis entails.


High Risk (because it was already widespread) Stage 4 Neuroblastoma cancer, that has already metastasised (spread) throughout the entire skeleton into the bone marrow.

Nearly 90% of cases are diagnosed by age 5. My son is 8 years old.


According to Statistics

  1. Children with low-risk neuroblastoma, the 5-year survival rate is higher than 95%.

  2. For children with intermediate-risk neuroblastoma, the 5-year survival rate is between 90% to 95%.

  3. For high-risk neuroblastoma, the-5-year survival rate is around 40% to 50%.

  4. The 5-year survival rate for High-Risk Stage 4 Neuroblastoma is 30%.

  5. 60% of patients with Neuroblastoma will relapse. Once in relapse, the survival rate drops to less than 5%.

  6. There are no known cures for relapsed Neuroblastoma.

I remembered feeling numb, not able to lift my arms. My face and hands covered in pins and needles.

The more the Oncologist Specialist explained, the more questions I had.

I could not breath.

I felt even more confused.



Today, Thursday 11 February2021, 4 months later, my son completed 5 sessions of chemotherapy AND last week various tests were done to see what impact the chemotherapy had on the cancer.

I got the results back and this time:

It was not me that was confused …


All the results of the various tests done when he was diagnosed were compared with the all the test done this last week:


THE SCANS DID NOT PRESENT ANY METASTASISED CANCER!!!!!

The cancer is almost gone!! ALL GLORY TO GOD.


Let me explain ..


1. Urine tests

When diagnosed: Neuroblastoma cancer markers were extremely high.

Current: Neuroblastoma cancer markers – NONE


2. MRI SCAN

MRI was not done when he was diagnosed. The report of last week stated:

- Described the huge tumour.

- Elaborated on the scarring shown on various parts of his body – basically all the damage that the cancer caused to his skeleton, especially to the bones of his spine and pelvis (explaining all of his pain)

- On the MRI it still appears that these parts to have tumour – but MRI can’t confirm whether it is active neuroblastoma.

- The oncologist informed me that The MIBG and bone marrow biopsy will tell us whether what is in the bone is still active neuroblastoma.


Photo below is the CT scan compared with the MRI scan.


Left Picture: CT Scan (October 2020)

  • The circle with the blue cap is the tumour (almost 10cm in width)

  • The green pencil is pointing to the kidney.

  • Notice how all the organs are squashed up against each other, because of the tumour.


Right picture: MRI Scan (February 2021)

  • The yellow pen is pointing to the tumour – notice how it has shrunk. It is about a 1/3 of tumour when diagnosed.

  • The green pencil is pointing to the kidney. Notice how all the organs is not as squashed up against each other.

The picture below I took when they were busy with his bone scan in October 2020. The white "glow" indicates the cancer throughout his skeleton - and that is exactly were his excruciating pain is.




3. MIBG scan – this one is the most exciting to share!!

  • Picture below (October 2020).

  • This is a nuclear scan test that uses injected radioactive material (radioisotope) and a special scanner to locate or confirm the presence of pheochromocytoma and neuroblastoma, which are tumours of specific types of nervous tissue.

  • It scans for uncontrolled or abnormal cell growth in the body. (Kindly visit this page should you want to read in-depth detail on how it works)

  • It listed ten specific parts with extensive areas involved with tumour in my son's body. This was BAD!

  • The Curie score was 22/30. (It should be below 2)


This picture below – MIBG scan February 2021

  • MIBG could not pick up ANY of the cells that has metastasized.

  • Scan showed normal biodistribution.

  • Curie score: 0/30



4. Bone marrow aspiration and trephine biopsy collected : 5 Friday 2021

As per the Oncologist and Surgeons explanations to me yesterday:

The initial bone marrow biopsy was extensively involved (no percentage given).

The repeat bone marrow biopsy showed less than 5% involvement by neuroblastoma. Anything less than 5% is considered a good response. This coupled with a negative MIBG demonstrates a good response to treatment.”

How they explained it to me – his body was 100% full of cancer.

95% of the cancer has been killed.

He will still encounter pain as a result of the scarring where the cancer was until healed. Around the scarring is still inflammation which causes expansion of tissue, which also causes pain.

Professors very impressed that my sons' immune systems had been giving a greater fighting opportunity with Super Foods - to strengthen his immune system. (I will elaborate on the Super Foods and immune system on future blog. If you can't wait until then ;-), kindly do send me an email to backbaileysbuddy@gmail.com)


Praise God for this miracle. All the glory to Him.


However - OUR JOURNEY IS STILL VERY FAR FROM OVER!

When all his friends are starting school on *Monday 15 February 2021, my son will be admitted again into hospital.

I have met with the two Professors specializing in Paediatric Surgery on Wednesday 10 February 2021.

They had gone through extensive lengths to patiently explain every detail. Horizontal & Lateral slices of the visuals of investigations. All the 7 specialists are extremely professional, yet have so much humility, high respect for the case at hand, plus a wealth of knowledge and experience. We are extremely blessed with our oncologist and her entire team of specialists.


On *Monday, my son will undergo extensive resection for malignant soft tissue tumour including muscle.

This surgery will take about 3 – 4 hours, without any complications and he will be in ICU for minimum of 5 days. (I will not be allowed to sleep over in the hospital with him this time and need to find accommodation closer to the hospital since it’s too far from home)


Friday, 12 February 2021 we have to undergo Covid tests again.

After he has been discharged from hospital – the following protocols still awaits us:


1. GFR (testing of the kidneys)

2. Audiologist test

3. As soon as he has recovered from surgery – he still needs to complete two more chemotherapy sessions.

4. Another Bone marrow aspiration and trephine biopsy.

5. When biopsy confirms the bone marrow is now 100% free of cancer, we will proceed with the autologous bone marrow stem cell transplant – we will be in isolations in hospital for four weeks.

6. Radiation.


Being his primary caregiver and being previously self-employed, I am not able to do this on my own, without any income and am pleading for your help please?

Please:

· Do not stop praying

· Do not stop sharing our story far and wide

· IF you can donate, Please please do?

Kindly help me to continue looking after my son to get us through this unimaginable nightmare. It take a village to raise a child.


No donation is too small.

Every little bit helps and make such a huge difference.

Recently, I did receive a R100 donation one late afternoon, which enabled me to buy electricity.

From the bottom of my heart, with so much humbleness and gratitude, I thank you so much for donating to this cause. I am speechless that people still make time and willing to assist.

I am for ever grateful.

The long-term protocols that we still must follow – will be daunting, but financially challenging and at times overshadows the emotional burdens of coping with my son’s cancer and treatment. Every little bit helps A LOT. Thank you.


Below is just the tip of the iceberg – not touching on the mountain of supplementary dietary needs any cancer patient needs. In addition to that, also day-to-day expenses like petrol, medical bills and keeping the roof over our heads. The costs to provide these needs are sky high.

Information regarding stringent feeding protocols were introduced to me (as mentioned more information regarding this on a future blog)


The day-to-day supplements for this “little fighting machine-son” - is more or less as follows:

1. Blueberry smoothie every day (with a list of ingredients)

2. The lists of foods on the www.drwilliamli.com website.

3. Protein/Bone broths (chicken & beef)/

4. Daily Probiotics

5. Essential Oils: Cinnamon/Ginger/Black pepper/Grapefruit etc - Essential oils.

6. Organic Cinnamon, etc


My son’s life is and will be an outstanding testimony for the greatness of God.

We should not accept deceases – We should fight back by casting it onto God.

Turn around and have 100% faith in our Supreme God.


Although his journey is not over yet, I have learned so much from life, about people, about myself, but mostly about what I am continuously learning more about God, Jesus and Holy Spirit.

When you kneel to God

He stands up for you

And when He stands up for you

No one can stand against you


I have realised, yet again, every time when I become anxious, numb, and overwhelmed, is when I have dependent on my “own strength”.

Or listened the comments of some people’s negativity I have received:


- “Can’t believe you are taking your son through chemo. His body would never survive this”.

- “How can you put your son through such kind of chemotherapy?”

- “No child has ever survived High Risk Neuroblastoma cancer – especially when it has metastasized.”

- “You have to travel to America or Spain – there is the only cure for this cancer. (Immunotherapy which is not available in South Africa yet)”


I am not confused anymore!!.

I have given all these remarks to God and pleaded with Him fight on our behalf.


BECAUSE I know that God is in Control.

I said and believe: God has my son in the palm of His hands.

I know that He is bigger than:

- Cancer

- Fear

- Depression

- Worries

- Statistics

I know that God does not make mistakes and that He does not deliver a miracle halfway.


I am writing this, to share our testimonies with you and that miracles from God still happens.

I want to remind you of God's promises and reassure you that God is alive, and

He listens to each and everyone’s prayers.

He is a God of love.

Jesus died so that we can live.

If we could only have faith like the size of a mustard seed, (Matthew 17:20), a person’s confident, abiding faith combined with God’s power, in the harmony of His will, can produce miracles.


John 16:23, where Jesus tells the apostles “Amen Amen I say to you, whatever you ask from the Father, He will give it to you in My name”.

Because we live in a fallen world, we focus so easily on earthly demands, chasing fame and fortune.

Satan tries every opportunity to steal from us - especially when we are at our weakest.


Ephesians 6:12 and 13

Our fights and struggles are not on earth - in flesh and blood.

But the fight and struggles are spiritual warfare.

Thus

Put on the complete armour of God to be able to resist the enemy and ask God to become the enemy of our enemy.


I want to use this opportunity to thank:


  1. Everyone reaching out, praying for us and have donated thus far

  2. The Oncologist and her team of Medical Doctors, Specialists, Professors, Nurses – that are involved in his treatment, AND all of the Admin professionals all over the country assist me before and after every test and hospitalization.

  3. My emotional support group close to me – my friends, family and the friends who became our family – for reminding me that I am not alone. For lifting my arms in prayer on days when I am too weak. For constantly keeping on reaching out – even if I do not get the chance to reply on messages. Thank you for still being there no matter what.

  4. Lastly, thank you for my Mom. For her strength in faith. That she knew – our faith is “just being tested” and that we should stand tall like Job. She fought from day one like a warrior. Her patience when I had none left. For holding me up when in all the moments when I felt like I was about to break into a million pieces. For holding down the fort in so many ways. For standing hours in the kitchen making lists, preparing food… The list just goes on.


I am extremely grateful and blessed to have you all in our lives.


My Heavenly Father

Thank you for Your unconditional love. Thank you for providing for us.

Thank you for being calm in the midst of this storm. I am forever grateful that we can feel your presence especially in the many uncertain moments. Thank you for carrying us and protecting us.

Please forgive my little faith, weakness, and moments where I still doubted Thee.

Please Jesus, if it is Your will, I ask in Your name, for total healing and please take his pain away.

Please save us all from the pain and sorrow in this world and protect us from evil.

Please take away my fear and guide us through these uncertain times.

I surrender to You with arms stretched wide. I know You hear my cry.

Please speak to me now.

Lord have Your way in me. I surrender.

AMEN


I will give an update on a new post after surgery, when we are back home.

Until then, please stay safe.

May God go with you.


All my love


P.S.

Pictures below are from the last couple of weeks during chemo, the waiting and during all the tests.

On “pain free days” we were able to ride bike and he went fishing for the first time ever!!




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