Lessons From Son’s Death From Pediatric Burkitt’s Lymphoma

A few hours ago, I received  an email from a father informing me that his 5-year old son died about a month after the family came to seek our help. Let me share this story with you.

Dear Dr. Chris,

Herewith I inform you, after some time of deep grief, that my beloved son, Reynald, couldn’t make it. He passed away on April 12, 2014 at around 5am.

He has confessed with his child-like-style: Lord Jesus is in my heart, Papa is in my heart, around 9 p.m. on April 11.

He’s now no longer suffering, and by God’s grace, I received revelation that he is in heaven with Jesus, and no pain.

Thank you for your supports so far and so sorry for bothering you at that time, the day you met me, and the day you met me, my wife and Reynald.

Although it’s been five months after his death, I write this with shivering inside my heart, although I know Rey had been safe, with God, and I know that death is not we should be afraid of, but what we expect for with our death, we will use our undecayed body to reunite with God.

Thank you for giving me a challenge at that time: NOT how long we will live or our chance to live, BUT how we’re going to die. That’s the important thing. Your statement was deeply planted in my mind.

Now I and my wife, have changed a lot in our perspective about life and death:

  1. As long as we live, we will serve God, Lord Jesus, with all we have: heart and mind, while paying attention to raise our daughter, Clarissa– Rey’s younger sister. We, both, do not question or are disappointed with God, or retreat from God, BUT we serve God whole-heartedly, while we’re also working to make a living. I serve in Discipleship, while my wife is Praise & Worship singer. We both lead cell group since Rey was healthy till now.
  2. Death is no longer something scary, BUT more to be like: Death is something that all men will face some day, and it’s a gate to eternity with God. 

But for sure, you are the first — the one and only doctor — I ever met that give a question or a challenge to think about “life and death” perspective.

I combined the ECCT therapy with your herbal therapy, which actually makes the lumps gone on April 11, 2014, but again, God’s plan is not our plan. Reynald is the first child patient in Surabaya since the  ECCT  (Electro Capacitive Cancer Therapy) institution was built in March 2014. I’ve met this doctor, and he and his team prioritized my son in his ECCT vest production, and they even prayed with tears and hope for my son to cure.

I believe there’s no coincidence to meet you there in Penang, to be a part of my life’s journey. Thanks for being a blessing in our life. Hope that your ministry is a blessing to a lot more people and give much deeper impacts to their lives.

God bless you.

Regards from Surabaya,

H & S (Reynald’s parents)

Reply: Thank you H & S for this sad news but I am real happy that your son’s death is not in vain. I know it is hard to overcome the grief  … all of us need to go through this period. But know that even when your son came to this world for a short time he had a message to tell you and me. Then  he left to be with the Lord .

Over the past few weeks I have read 3 books about people who died and went to heaven and they came back to earth again to write their stories. It is amazing….heaven is real and God is real. There is no doubt that your son is happy there with the Lord.

So know that your son is happy and well with the Lord … and it is real. I am glad and blessed to know that you benefited from this cancer experience … we need to lead a spiritual life …all of us are eternal souls who come to this world for human experience. Our shell  dies and rots away but our soul lives forever.

I praise God that your faith is much strengthened from this sad event. Amen.

Four-year-9-month with Burkitt’s  Lymphoma

This sad story started with an e-mail I received on 4 March 2014: Paediatric Gastro Case from Surabaya – REYNALD HARVEY WIBISONO (4 yr 9 mo) – now is judged in as Burkitt’s lymphoma (I’m in PENANG now)

Dear Doctor Chris,

My name is HW, from Surabaya – Indonesia. I’m in Penang to have my son’s health checked (since Sunday Feb 23, 2014 – my son is in Gleneagles since Tuesday Feb 25, 2014). Just got info from my friend to ask you to seek second opinion.

To give you a brief of the story, I attach all the report tests taken in Surabaya, then what has been tested in Penang, will be written down side below.

My son, 4 yr 9 mo old, Reynald, has had several tests in Mitra Keluarga Hosital Surabaya which lead to “ suspected Ca gaster” with unconfirmed tests below :

  • Endoscopy & CT Scan reading which stated “probably” Ca Gaster
  • Blood Test which didn’t support those two tests.
  • PA Test which didn’t show : no malignancy
  • Thorax radiology : normal

Composite pix

My son’s and my family health history and chronology :

  1. We don’t have any cancer history in our bloodline (me & my wife) – up to our grandparents.
  2. I have allergic history to seafood (childhood), but not my wife.
  3. My son doesn’t like fruit.
  4. The symptom was started on Jan 20, 2014by vomiting and diarrhea, once only, each. There were several times of pain in his gaster (just complaining but not so bad), and no fever.
  5. By Jan 27, 2014, the pain was getting stronger (but after belching or farting, it’s soon ended). We went to a pediatrician, which suspected: Helicobacter pylori infection. The treatment was 2 antibiotics + 1 H2 blocker (gabbryl + abbotic + ranitidine) for 1 week.
  6. By Feb 3, the pain was there, and was still treated with 2 antibiotics + 1 H2 blocker (gabbryl + abbotic + ranitidine) for 1 week (bloodtest showed negative for H. pylori, but HB was 8), but consumed until Feb 6when we decided to go to gastroenterologist in Surabaya which suggested to do 1 full month of food allergic self test before doing endoscopy. But then I decided to meet other gastroenterologist (suggested by the previous one) to have endoscopy, which then decided to be executed in Monday 10Peb14.
  7. By Feb 10, endoscopy test was done which was suspected as Ca Gaster due to the presence of 3 lumps in the my son’s gaster.Early blood test was taken and showed negative for H. pylori, and theHB was still 8, so that blood transfusion (B+) was done100mL. Samples for PA was taken.
  8. By Feb 11, CT Scan and Thorax radiology tests were taken. Blood transfusion (B+) was done another100ml.
  9. By Feb 12, complete blood test including CEA Marker test was taken but the CEA Market was only 0.83 & CRP was only 2.The HB showed in the test was increasing,to be 11.5. Complete result was attached.
  10. By Feb 14, the biopsy test result found no malignancy
  11. By Feb 15, we decided to leave the hospital since there’s no decision from the team of doctors (paediatric gastroenterologists, paediatric surgeon) — what it is, and how to treat this.

Some actions taken by me & medication given after leaving the hospitals were :

  1. I stopped giving milk (Pediasure S26), and any dairy products such as cheese, breads, tea drinks, chocolate containing food & beverage, fried food, any fabricated sausage & nugget, since Peb 13 until now.
  2. I started giving honey + propolis to replace milk by Feb 13 until now, and giving porridge / misoa (rice noddle) / mushy rice and grounded steamed beef / finely shredded beef, no chicken, no fish/seafood to avoid food allergic.
  3. I started giving meals 5-6x/day with smaller portion by Feb 14, rather than 3x/day previously
  4. Medication taken and given since leaving hospital under paediatric gastroenterologist’s suggestion were : Neciblok Sucralfate suspension (3X daily, 5cc), Ranivel Syrup Ranitidine 75mg/5mL (2X daily, 5cc), Nexium esomeprazole 20mg tablet (2X daily, 1 tablet).
  5. Oral pain killer (paracetamol) given after the IV was removed by Thu Peb 13. The dosage was paracetamol 20mg divided into 3 packs of powder, and given once in Fri Peb 14 dawn, once in Sat Peb 15 dawn, once in Sun Peb 16 almost midnite. Then I continue with Dumin syrup (paracetamol), 5ml this early morning (around 3:30am)

Some symptoms I observed  BEFORE and AFTER Feb. 13:

  1. BEFORE: sound of abdominal bloating which then followed by severe pain in my son’s stomach, usually happened once (in between Peb 3-9) in between 2.30 – 4am and once in between morning (after breakfast) till evening (after dinner), and soon disappear after a very foul smell fart.  AFTER: sound of abdominal bloating which then followed by less severe pain in my son’s stomach, only happened once (in between Feb 3-9) in between 2.30 – 4am, and soon disappear after a very foul smell fart.
  2. BEFORE: frequency of less severe pain (beside the severe ones) in my son’s stomach, usually happened 3-4 times in between morning (after breakfast) till evening (after dinner), and soon disappear after a smell fart/belching. AFTER: only happened 2-3 times.
  3. When the pain referred by #1 above is happening, I fingered my child’s stomach and could feel a lump under his chest (upper abdomen)
  4. Both BEFORE and AFTER  are the same : no fever, no vomiting (except once in Jan 20 & twice in Feb 8), normal faeces, weight in between 15-16 kgs, while his height is about 102cm.

Now, in Gleneagles Penang, my son is diagnosed as “favour to Burkitt’s Lymphoma”.

  1. Monday, meet paediatric surgeon, then let the Pantai Hospital pathologist did a review of the biopsy sample taken in Surabaya that I brought. It was claimed as LYMPHOMA, then further PA was taken to make sure.
  2. Tuesday, before steroid treatment, all blood test was normal, except LDH 275, HB 10.5, albumin was lesser than minimum limit for kid.
  3. Wednesday, after steroid treatment, all blood test was normal
  4. Friday, after steroid treatment, all blood test was normal
  5. Saturday, after steroid treatment, all blood test was normal, except HB was 8.7
  6. Sunday (yesterday), after steroid treatment, blood transfusion was done at 150mL.
  7. Monday (this afternoon), the further PA reading was given:

IMMUNOHISTOLOGY (the atypical cells are positive for CD20 and almost all cells exhibit MIB-1 activity. The cells are negative for bcl-2 and strongly positive for bcl-6. The cells are consistently negative for Tdt (x2).

MICROSCOPIC DESCRIPTION (the sections of the gastric biopsy show reactive lymphoid follicles as well as a focus of malignant lymphoid infiltration of the lamina. The cells are medium sized and exhibit prominent nuclei, with prominent granular chromatin and nucleoli, occasionally multiple mitoses are seen, and lymphoepithelial lesions are not seen.

DIAGNOSIS (mucosal infiltration by high grade B cell lymphoma, favour Burkitt lymphoma)

  1. In the faeces, there’s no blood within this week.

9. The quickest action suggested must be done by Wednesday Mar 5, 2014 are :

  • Bone Marrow Test
  • Chemo drug into the brain to prevent B cell spread
  • Prepare a chemopot in the chest

Since those 3 actions are scary, could you please prioritize your time to see me ? I’ll go to your clinic.

Looking forward to your reply urgently. Regards, HH.

Reply: Come and see me as soon as you can. 

On 4 March 2014, H came to see me and we talked. It was indeed a very sober occasion. Our hearts were heavy. I asked H to consider the following points seriously.

  1. Facing Reality of the Treatment Outcome

The doctors in Surabaya was unsure of what Rey had but suggested chemotherapy. In Penang the doctors said it could be Burkitt’s Lymphoma and the treatment must be carried out right away. Bone marrow would be extracted from his lumbar, a hole to be drilled in his head and a chemopot installed in his chest.

My question: Can this procedure and treatment cure Rey?

H was told: The treatment has a high chance of success.

Indeed in the net we can read these: 

  • More than half of patients with Burkitt’s lymphoma can be cured with intensive chemotherapy. The cure rate may be lower if the cancer spreads to the bone marrow or spinal fluid. The outlook is poor if the cancer comes back after a remission or does not go into remission as a result of the first cycle of chemotherapy. http://www.nlm.nih.gov/medlineplus/ency/article/001308.htm
What is the long-term outlook for a child with Burkitt’s lymphoma? Your child’s prognosis greatly depends on:
  1. the extent of the disease
  2. presence or absence of metastasis
  3. response to therapy
  4. your child’s age and overall health
  5. tolerance of specific medications, procedures or therapies
  • As with any cancer, prognosis and long-term survival can vary greatly. Prompt medical attention and aggressive therapy are important for the best prognosis, and continuous follow-up care is essential. http://www.dana-farber.org/Health-Library/Childhood-Burkitt-s-Lymphoma.aspx
  •  Treatment of limited stage (stage I and II) Burkitt lymphomas is usually very successful, with a cure rate of over 90%. The cure rate for children with more advanced (stage III or IV) Burkitt lymphoma ranges from about 80% to 90%. http://www.cancer.org/cancer/non-hodgkinlymphomainchildren/detailedguide/non-hodgkin-lymphoma-in-children-staging
  • Age at diagnosis is a significant prognostic factor. Broadly speaking, older patients have poorer outcomes. Similar pediatric data are not yet available. http://emedicine.medscape.com/article/987540-overview#aw2aab6b2b4
  • The overall prognosis for children with non-Hodgkin lymphoma has steadily improved. The projected 10-year survival rate for children diagnosed in 2005-2009 was 90.6%.
  • In the United States, 80% of children treated for early-stage Burkitt’s Lymphoma remain free from relapse three years after treatment. http://www.hannasheartsofhope.org/burkitts_Lymphoma.php
  • Survival statistics can sometimes be useful as a general guide, but they can’t predict what will happen in any child’s case. The ranges of numbers given below are based on the results of several studies that have used different treatment regimens or included slightly different groups of patients.
  • The diagnosis of a lymphoma in children is rare. There are about 500 new cases of non-Hodgkin’s lymphoma diagnosed each year in kids in the United States. It may occur at any age during childhood, but is rare before age 3. http://www.lymphomation.org/type-childhood.htm
  • Short-Term and Long-Term Side Effects: Intensive lymphoma chemotherapy affects the bone marrow, causing anemia and bleeding problems, and increasing the risk for serious infections. Chemotherapy and radiation treatments have many other side effects — some short-term (such as hair loss, changes in skin color, increased infection risk, and nausea and vomiting) and some long-term (such heart and kidney damage, reproductive problems, thyroid problems, or the development of another cancer later in life).
  • Relapses:  Although most kids do recover from lymphoma, some with severe disease will have a reoccurrence. For these children, bone marrow transplants and stem cell transplants are among the newest treatment options. http://kidshealth.org/parent/medical/cancer/cancer_lymphoma.html#

My question: While statistics say the kind of lymphoma that Rey has could be successfully treatment, this statistics may not be applicable to Rey. What is the oncologist’s personal experience? Has he ever treated 10 or 100 of such cases himself in his clinic? And for such cases, how many are cured? Merely relying on statistics of what others do may appear “scientific” but could be meaningless. 

  1. Facing Financial Reality 

My question: How much is the treatment going to cost?

H was told: A cycle of chemo cost about RM 5,000, Chemopot – RM 4,000 – 5,000.  The initial treatment of 6 cycles could come to about RM 40,000 to 50,000.

My question: What happen after the 6 cycles of chemo? Will Rey need more chemo? That means more money for more treatment. Let us assume that in total the total cost of  treatment finally comes to RM 100,000. Do you have that kind of money to spend?

H told me: He would borrow or sell his house to come up with that amount. It also means, he will be financially drained and ruined. He would have nothing left to take care of his family and do his business.

My comment: It may be okay to cough out that kind of money if Rey can be cured. What if he is not cured? Money gone and son lost. 

  1. Facing Death 

Everybody with cancer wants to find a cure — cure means the disease goes away and will not come back. Unfortunately, cure is elusive even though the “response to treatment” could be high, as reported in medical literature. But response does not mean cure.

Some years ago I had a 2-month-old baby with neuroblastoma, Stage 4. The doctor scolded the parents for declining chemotherapy. I clearly remember that morning when the baby’s parents came to my house and sat down to talk (and cried) for 2 hours. The first question I asked was: How do you want your baby to die? Natural death or die while doing the chemo? The mother replied she preferred her baby to die naturally. Then my respond was: Let’s do nothing and takes some herbs! Stop feeding her milk. Change to fruit juices. Today, this baby is a normal 15 year-old. (Note: this case is unique and does not necessarily apply to Rey at all. Each one has his/her own healing path).

What could have happened if she was to undergo the chemo as suggested by the doctor? Will she be still alive?

Even if she was cured, what would be the chances of her getting another cancer as a result of the earlier toxic treatment?

I reminded H that while we all hope that the chemo would cure Rey, we also need to face reality that he might die because of the treatment. So, how do you want Rey to die?

This is what I told H: “Go back and discuss this matter with your wife. Call your parents in Surabaya and talk this out with them.  Then make your own decision.”

The next morning, 5 March 2014, H and his wife and 5-year-old Rey came to our centre. This time, our conversation was more cheerful. It appeared to me that H seemed to be more confident. He had made up his mind. No chemo! He wanted to try the herbs.

I made it clear to H and his wife. I have no magic bullet to cure Rey. The herbs may be able to make his life a bit better but don’t expect a cure. If his condition deteriorates, they should ask for medical help.

I must confess that every time a child came to our centre for help, my heart sank. I knew this would be an uphill battle. How is a young person / baby understand that he/she has to drink bitter herbs every day? And many times a day. Then the diet has to be changed. No sweets, etc., etc. It is hard. Under such circumstances, we could only try our best.