Light at the end of tunnel.

When we received the news, we are devastated, but as parents with positive attitude, we approached it as we given a golden opportunity to cure our daughter and we decided not to miss the chance . What other option was there but to become expert caregivers and advocates on behalf of our sweet child? We want to be sure we are giving the best and taking the right decision. 

We prepared to carryon Bone Marrow Biopsy for Mahiyaa and we too managed to seek opinions from four other Paediatric Haematologist and Oncologist from all over the country with the help of our family and friends from medical background. After 3 days, the biopsy result confirmed that our princess having B Cell Paediatric Acute Lymphoblastic Leukaemia and needed immediate medical attention .The Dr shared with me the chemotherapy treatment sequence and asked us to be patient while identify the possible risk in this diagnosis to increase the remission rate which the result we will be receiving during the induction treatment.

She was put on hypertensive hydration treatment via IV to reduce the risk and complication of tumour lysis syndrome during her treatment for the cancer where large amount of tumours are killed off. As she was having gigantically super high rare white cell count in her blood, the acute chemo treatment may damage her kidney, liver or  potentially fatal complication and Mahiyaa should be closely monitored before ,during and after the courses of chemotherapy .

We have to stay in hospital another 10 days. During my stay with her I slowly explain Mahiyaa  about her diagnosis and the reason for our stay in the hospital. I explained her that she have very bad bacteria in her blood which make her severely ill and I need her to be really strong to help the doctors to kill the bacteria with medicines. Her innocent face turned very fury as she was angry with the bacteria which make her stay in hospital longer keep telling she will fight the bacteria. She misses her younger brothers Kayhan Bala (4) and Deehan Bala (2) and her Virtual Classroom Friends. How I explain her that she is fighting even more deadliest disease than a bacteria? 

 

Fear Of Unknown.

No parents prepare for what will happen when they arrive in hospital. Seeing Mahiyaa poorly and having no control over what is happening completely throws us. The first thing I remember was I'm not alone. There are lots of parents and care givers on the ward going through exactly same thing and SJMC Hospital staff are amazing in supporting us through this time. Our friends and family kept her happy with gifts and phone calls .We make sure she don't feel the vulnerability of her treatment. We make lots of tiktok videos, played games. Following our 10 days stay in SJMC paediatric ward , I tried and diverted my mind in staying positive. There are no timescales or guarantees for how things will take .

 A bad morning followed by good afternoon and sometime when Mahiyaa really sick ,we just hang on those moments as we will get it through. Most of the time I spend time surfing the internet whenever Mahiyaa resting. Rather then grieving and crying I start learn about Mahiyaa diagnosis as much as I can. Knowledge is important. When Mahiyaa discharged, I will need this knowledge to care for her and do my best helping her overcome the side effects of the drugs. I will need this knowledge to explain the condition to anyone involved in Mahiyaa's health care. This also help me to see how far she has come on her journey especially when I have became her voice. I strongly believe, what we don't know really can hurt us.  As the fear of the unknown is tendency to be afraid of something we have no information about any level, I spend lots of time surfing the internet and by talking to the people with Medical background to collect information. 

I understood in Malaysia the percentage of paediatric cancer cases is very small compared to a lot of adult- onset cancers. This cause less awareness among the parents. Information and education may help parents to recognise symptoms , and to bring their children to the right medical professional to diagnose and treat them. I felt so much calm to understand the fact that cancers in children are so treatable. I also would like to highlight the fear parents have about chemotherapy are always carried over from what they see in adults but, on the whole, I find that children tolerate chemotherapy very well. Instead of opting for alternative therapy, I recognise the importance of medical advances and therapy that will provide immediate help and keep Mahiyaa's cancer in check.

The Dark Day

Our daughter Mahiyaa Bala J was normally a bubbly, vivacious child. She is a diva for many and loved by everyone. On May end, over the weekend I found my daughter looking tired and not excited about the weekend nor her favourite activities. I thought maybe tired since she was very busy with online classes due MCO and in next 3 days we found she develop fever. As parents we feel something is not right and as per our usual practice we brought her to ER immediately. This time we are more concern on making sure her fever is not due to Covid Virus. The MO in duty ordered  blood test for her. Soon after her first blood report the nurse came told us to run another blood test as the previous one not clear. We was surprised and again another blood test was conducted. An hour later MO informed us that he have to admit Mahiyaa as her blood test looks hay wire and referred us with Paediatric Specialist and send our blood report to Haematologists as well. We was shocked to know her blood reading was not stable with Blood White Cell count over 1040 Million when it should only ranges between 5-11 for normal people.

Due to MCO, only one parent allowed to stay with her and I decided to be with her. After Covid PCR Test we are admitted in observation ward. Only god knows how many medical website I have surfed to have some rough idea what could be the reason of the weird white cell count while waiting for the Paediatric come in the morning with third full blood picture result and most page outcome was about Hepatitis B and Leukaemia. The 'mother instinct' telling me something is really to be worried and this time I couldn't resist the feeling that I'm just being paranoid. The more I surf the more I get sick on my stomach. I don't know how I pass the night and in the morning Haematologist came with the most shocking news that my princess having Leukaemia for sure but only Bone Marrow Biopsy result could confirm it.

"Can you imagine what it is like to hear those words come out of a doctor's mouth" ? As a mother I couldn't stay calm, I never knew a healthy breast feed child who had great prenatal care and never missed any vaccines nor routines check up could have cancer out of sudden at the age of  5 year 7 months. I feel the world just shattered and collapsed under my feet. I remain calm in front of my daughter while doctor asking me some question about her early symptoms and about our family health history. There was no any early symptoms like bruising, frequent fever or bleeding beside having fever for the first time after 1 year 2 months.

The result of surfing internet for more then 8 hours, I would say I am almost prepared for the diagnosis even its very hard to believe but one thing I feel little relieve to know with the proper treatment, the outlook for kids and teens with leukaemia is good. I called my husband to share the result. I tried hard to hold my tears and fears. Somehow I manage to pass the news and we both was in silent. We thought we could hide the feelings but only God knows what we felt on that few minutes without uttering a single word. I know he is breaking on the other side.