"I was almost 28 weeks into my third pregnancy when I heard the news from the doctor."
Mummy Celine Ho was pregnant with her 4th child, and eagerly awaiting the arrival of the little angel. Fate, however, had other plans for her. She talks about how her life changed drastically when she got to know that something was majorly wrong with her then 4.5 year old son.
First warning signs
"We spotted some spots and bruises on Kye Feng in late 2011. It went away and to be frank, we didn't think much of it. However, when a 2nd episode happened again after a few weeks later, we took Feng to see a Paediatrician. He was puzzled and unable to advise on the recurrence. He suggested that we go to KK Hospital (KKH) for a blood test. Later in the day, the hospital called us, and asked us to bring Feng in immediately without delay to the A & E."
Little Feng's battle with leukaemia had officially begun. He went through a series of tests (bone marrow aspiration (BMA), biopsy of skin issues) to detect the actual type of leukaemia he was affected with.
On inspecting his full blood count and BMA results, doctors suspected that he was having an extremely rare form of leukaemia known as Juvenile Myelomonocytic Leukaemia (JMML).
Celine elaborates, "Because of its 'rareness' and the last such case dating back to a decade ago, further tests had to be done in Germany, for confirmation. We waited for almost 4 months to confirm on the actual diagnosis."
Hope in the form of cord blood transplant?
At the time, his elder sister Cheryl Boon, and twin brother Kye Teck, were 10 and 4.5 yrs old. Says Celine, "The only thing we could tell them was that their brother was very sick and could not play much with them."
"Doctors were unable to find suitable donors, so my pregnancy actually seemed like good news, as the baby sister's cord blood could be used for his transplant. However, there was a requirement, that it had to be a full match, the chances of which were only 25%."
"I was almost 28 weeks in my pregnancy when I heard the news from the doctor. I prayed hard that the cord blood would be a full match."
Little Feng did almost 7 cycles of chemotherapy sessions while waiting for the birth of his sister. In October 2012, Christabelle was born. After 2 months of testing and waiting, it was a full match! Feng had his first CBT (Cord Blood Transplant) on 20 March 2013.
"We waited for almost 6 weeks for the stems cells to get engrafted; there were a series of side effects related to the transplant. Feng was discharged in May 2013.
"We were relieved that he had won the battle, and hoped that life would be normal once again."
The dreaded relapse
Their happiness was short lived though. It was year 2014, Feng and his brother were then in Primary 1.
Celine recollects, "We found his chimerism (% of stem cells in the body) had dropped from 100% to 75% in Jan 2014. The doctor suggested that we monitor it for another 2 months. During the March school holidays, Feng did another BMA. The chimerism had dropped further to 25%, and showed blast in his bone marrow test. He had had a relapse."
Feng got back to chemotherapy to bring the white blood cell count down. "On one occasion the white blood cells hit 135,000 (normal range is 6,000 - 15,000). School had to be stopped completely. Feng despised the IV Plug and in a week, he needed to set 4 IV plugs. He would beg me to insert a Hickman line rather than get poked every other day."
A second transplant was the recommended option. Since there were no suitable donors, we decided to go over to National University Hospital (NUH) to proceed with the Haploidentical transplant, which enabled the use of parent stem cells.
In Nov 2014, after being hospitalised for almost 60 days in KKH, we moved to NUH.
Another BMA was done for Feng in NUH and the results were unexpected. The leukaemia had transformed to Mixed Phenotype Acute Leukaemia (MPAL). The transplant got delayed due to this transformation, in consideration of the risks involved.
Celine remembers those days, "In NUH, Feng was unwell almost every day. He needed to do frequent blood and platelets transfusion to keep his life going and struggled with frequent infections, which worsened the chances of doing a transplant.
I still remember that in late 2014, he had high fever and low BP, and had to be admitted in the ICU. He was bloated almost everywhere, and doctors prepared us for the worst.
Maybe it was his fighting spirit or a miracle, but Feng was sitting up and asking for soya bean milk, and chatting away on the very next day."
Prepared for the worst
She continues, "In 2015, we were referred to Palliative Care, just to improve his quality of life. The nurses from Palliative Care would do house visits and check on him, reducing his visits to the hospital as much as possible. To a lot of parents or people, the word 'Palliative' sounds terrible as it can mean that the child might be left with very little time. But Feng enjoyed the company of the palliative nurses, he would even demonstrate to the doctors on how to use nerf guns."
"And then, in May 2015, we received a terrible news; that the leukaemia cells had grown from a mere 12% to 80%, in just 5 months, despite all the treatment he had received."
"Upon the doctor's advice, in June 2015, Feng entered into Natural Killer (NK) cells therapy (like a mini transplant, where I was the donor). He seemed to respond quite well to it, the leukaemia cells did drop further from 80% to 64%.
We were given 2 options now:
- To be happy with the 6 months of life he had left.
- To go for a stem cell transplant knowing that if it failed, he wouldn't survive.
Without a second thought, I chose the latter."
So in Sept 2015, Feng went in for his 2nd transplant, with leukaemia cells of over 50%. Mummy Celine was the donor for him.
She says, "On 20th and 21st Sept 2015, Feng received my 2 bags of harvested stem cells separately. To everyone's surprise, his leukaemia cells dropped significantly, from more than 50% to a mere 2.6%. They all said, mummy's stem cells are so powerful!"
Feng was discharged on 6 November 2015, with a "highly impossible successful transplant".
It has been almost 1.5 yrs now after his transplant. Despite the occasional hospital admission due to infection, Feng is doing well.
Looking back, Celine is grateful for what she has today, "Feng has gone through so much in the last 5 years. What we learnt is, not to worry much, and to live every day happily, without regrets.
At times, there is bound to be tension in the family, but ultimately, it is about how you overcome and manage your problems.
The whole ordeal has made me realise that, one should never lose hope, and do everything with determination, irrespective of failure."
Thank you, Celine, for sharing your brave fighter's story with us. We hope and pray that the experience has made him a warrior and that, he will continue to fight life's many battles bravely.
Wishing little Feng good health and happiness always!
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