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Seeing My 6-Year-Old Daughter Lose All Her Hair to Chemotheraphy treating Leukimia is Devastating, But I Won't Let It Define Her .

My daughter started losing all her hair because of chemotheraphy to treat her ph+ B-Cell ALL. There is lot more reversible side effects comes together with chemotheraphy but hair lose is significant change. It was very difficult to watch her go through this, but I'm now doing all I can to make sure she face this with self-confidence.




After her introduction session Me and My daughter did one thing we wanted to do for very long time. We wish to donate our hair to cancer association to make a free wig . But we never this this will be the time when she diognosed with ph+ B-Cell ALL.

Before all her hair shed due to chemo, we look for hair donation association to donate our hair and a saloon which doing the hair cut following the hair donation requirement. We found this hair donation decision counterbalance the feelings of being out of control of the future. Plus, there's the added element of knowing what I'm "losing" is being "given" to someone else.

We are proud of our little girl in a such young age able to understand the power of giving and making differences in somebodies life. It feels absolutely amazing to be able to help someone and bring a smile on their face with small acts of kindness.



Few weeks into first cycle Mahiyaa began experiencing hair loss .I started to notice lots of hair everywhere in the house while sweeping the house and found handful hair on her pillow too. Even before Mahiyaa aware of how different she looked from those she knew and loved, I began to explain her what the chemotheraphy doing to her and why she is losing her hair. Me and my husband suggested her to bald the head to avoid the mess and pain of watching it drop so much. She agree for it and immediately we called barber to our house .


As a parents we have promised to walk in this journey together with her and wouldn't want her felt left alone in anyway and we opt ourself to bald our head too . Surprisingly her other siblings and her grandfather ,my dad Mr. Ganapathy don't want to be left out in the mission supporting Mahiyaa battling cancer and shaved their head too.

At this moment not only for her but it was total life changing moment for me. The society often associates femininity with long, flowing locks. I am one of them who embraced long hair and maintaining even its costly and time consuming. Now I would say it takes thick skin to rock bald head. Sometimes , as a women many times I felt not confident enough to face the society and my self esteem was sinking in one point but when I realize there is two little eyes are upon me I adjust my stern and ready to roll .

We don't want get a wig or bandana for her to cover the head as we believe and we want our kids to know everybody is beautiful in their own way and there is nothing to feel shy when we are different from others as beauty comes in all form and at the end what matters is that how we see ourself. I should admit here I do have self doubt but I imagine myself in her position and day by day I have become comfortable with having no hair.





Mahiyaa feels so much better looking at me and seeing me look the same as her boosted my spirit up. whenever people would see me a lot of people would just assume I having cancer so then I went into explaining, 'No, it's not me, it's my daughter and I'm doing this to support her.' And we kept our head bald following Mahiyaa hair growth. So it wasn't like it was just one time, it was an ongoing thing. This decision of balding gives me a chance to share my story and raise awareness about paediatric cancer when people ask me why my head is shaved and If I empower another woman to have the confidence to embrace her baldness during cancer treatment, that is just icing on the cake for me.

At this point, I genuinely happy and grateful to have wonderful family and friends around us to support us in all way. I'm so touched when my in laws family and my family created awareness to their children on their cousin's illness and they never made her feel different in anyway through this journey. At this point I also felt so thankful when Mahiyaa's school , Taylor’s International school management whereby they were so accommodating and supportive towards us. The wonderful teachers created awareness among her classmates on her condition. I'm so glad to know how the whole management put effort into forming a bully free society . We never felt alone.

Here is the guide for hair donation .

Thinking about Donating Hair? There are several organizations and programs that can turn your long locks into free or low-cost wigs for people with cancer. A wig can give self-confidence, strength, and hope to someone struggling with the emotional challenges of hair loss. Here’s how to make the kindest cut of all:

1. Choose where to send your hair.

Every hair donation organization has its own mission and goals. Do a little research to make sure that you’re comfortable with who receives the wigs and how. For example, In Malaysia Locks of Hope focus on patient who’ve lost their hair from cancer or another medical reason. More information you can find in their webpage.

2. Read the hair donation requirements carefully.

It’s important to follow an organization’s donation requirements if you want your hair to be used follow the guidelines of the organization you’ve selected. They’ll just need to follow a few simple but specific instructions so that your hair can be used. Before you head to the salon, make sure to:

• Wash and dry your hair. After you wash your hair, don’t use any hair products, such as conditioner, hairspray, gel, or mousse. Hair that’s donated must be completely dry before it’s shipped so it doesn’t mold and become unusable
  .
• Pack your supplies. Bring the organization’s hair-cutting guidelines, a ruler, ponytail holders, and a resealable plastic bag.
• Have a hairstyle in mind. Cutting your hair for a cause can make you feel great, but you also  eed to know what kind of style you want when you walk out of the salon. This can help you avoid having any regrets from donating your hair.

3. Follow the guidelines for cutting and donating your hair.

• Make your dry hair into ponytail/s and secure both ends with a hair band
• Cut a minimum of 6 inches of hair.Ask your hair dresser to cut above the top band,  (8 inches is preferred. Coloured hair is accepted, but bleached or damaged hair is not.)
• Secure your ponytail/s in a zipper bag
• Print the hair donation form and fill in your details.
• Put the hair and hair donation form in a sealed plastic bag, and then into an envelope.
• Mail your hair to the Association's office.

Chemo- Big tough cure for a big bad disease.

Chemotherapy (chemo) is the main treatment for most childhood leukemias. This is treatment with anti-cancer drugs that are given in a vein (IV), in a muscle, in the cerebrospinal fluid (CSF) around the brain and spinal cord, or are taken by mouth. Except when given in the CSF, chemo drugs enter the bloodstream and reach all areas of the body, making this treatment very useful for cancers such as leukemia.

The same thing was done for Mahiyaa. Her planned chemotherapy is to give chemo in cycles, with each period of treatment followed by a rest period to give the body time to recover and each time before start the cycle bone marrow was checked for a blasts. The treatment for Mahiyaa uses lower doses of chemo over a longer period of time. We was informed the schedule will go up 2 to 3 years meanwhile dr’s are waiting for her BMT result from Singapore to classify her cancer according to her severity to apply suitable treatment plan.

One think we know about chemotherapy is most side effects usually go away when treatment is finish and it always reversible but yet Dr Chan as used other ways to reduce these side effects. For instance, Mahiyaa was given tablets to help prevent or reduce nausea and vomiting. Mahiyaa was in high risk of Tumor lysis syndrome. This is one of side effect of chemo can happen in children who had large numbers of leukemia cells in the body before treatment. When chemo kills these cells, they break open and release their contents into the bloodstream. This can overwhelm the kidneys, which aren’t able to get rid of all of these substances at once. Too much of certain minerals can also affect the heart and nervous system. This problem was prevented by give lots of fluids during treatment and certain drugs, such as bicarbonate, allopurinol, and rasburicase, which help the body get rid of these substances can to help reduce these side effects.

Chemo for Mahiyaa was given directly into the cerebrospinal fluid (CSF) around the brain and spinal cord. Before her chemotherapy treatment, Mahiyaa had a port surgically installed on her right side, just above her breast and below her collarbone. Ports provide an easy way to administer the chemo drugs. As part of each cycle, Mahiyaa received the chemo drugs along with medications to combat nausea and to help beef up her immune system, as well as IV fluids for dehydration. During the chemo infusions, Mahiyaa's Dr gave her some medicines to prevent mouth sores and anti-nausea medications. She did, however, have diarrhea for about a day during each chemo cycle.

Chemotherapy side effects vary, depending on the type of cancer a patient has and the drugs he or she is given.Each drug has its own side effects also, when combined with other chemotherapy drugs, there can either be worsening of a side effect or development of new side effects.

 

Mahiyaa encountered the following side effects with her chemotherapy treatment:

Fatigue
After the first cycle of chemo drugs, she is no ,ore how she used to be before. Very quite reserved weak and with full of fatigue. Fatigue is common problem which worsens as chemotherapy treatment combine with steroids. Many patients go on disability while undergoing chemo. We tried to keep her active as much as we could by going for small walk or little playing activity at home.

Hair loss
Mahiyaa hair began falling out about two weeks after her first chemotherapy treatment. I put my hand in her hair and gobs started falling out. This something I expected and we plan to do something that we wanted to do so long even before we ever know Mahiyaa will diagnose with cancer. Its the time. We donated out hair for cancer support association. We feel so satisfied. We haven't shave her hair but just cut it short to balance her emotional status.During MCO we find really hard to get hair stylist who have vaccinated, but with help of my friend I manage to get a kind hearted hair stylist, Mr Barathan to cut hair short and styled it. I have shared the guides to donate hair in my next post.

Loss of taste
Mahiyaa didn’t lose her appetite indeed, she developed a newfound craving for Idli and Chicken curry. But she did lose her craving for “sweet.” She no longer likes anything with sweet. Lost of taste in chemotherapy is common and it is the main reason for the patient to lose weight. But for some period of time, the steroids will boost the appetite and make the patient look little chubbier.

Swelling (edema)
Mahiyaa experienced swelling in her hands and feet, which can be a side effect of some chemo drugs. This was treated with diuretics (drugs that help the body excrete excess water). Mahiyaa do get Moon face. But it was gone right after the first cycle.

“Chemo brain”
Mahiyaa had ability to retain numbers easily even while she was 3 years old. But that skill disappeared after the second cycle of chemo drugs. I make sure she practise her brain to remember things by asking he to memorise times. I am not sure how it really work but i just make sure she don't lose the ability to recall and remember.

After every Chemo cycle gradually, Mahiyaa got better in the way she feeling, When she felt almost normal again, it was time for the next infusion. Everyone’s  attern is a little different. The effects of chemo are cumulative. They get worse with each cycle. Each infusion will get harder. Each cycle, expect to feel weaker. Before Mahiyaa have each cycle of treatment her doctor and nurse will check how she is. This includes finding out how she coping with any side effects. After a few cycles they'll also check how the treatment is working. Some people might need a change in their treatment plan. This change delayed before her next treatment or a reduction in the dose.

The Journey Begins, Stay Tuned.

After Mahiyaa started the first induction phase , she have a bone marrow test to check how well the treatment has worked and find out more on minimal residual disease(MRD). MRD is a sensitive test to check if there are any remaining leukaemia cells in her body. She was allowed to be discharged to continue taking her steroid and chemotherapy tablets at home. She was under strong steroids. Steroids are naturally made by our bodies in small amounts. They help to control many functions including the immune system, reducing inflammation and blood pressure.

Man-made steroids can also be a treatment for many different conditions and diseases. I feel its very important for me to stress about the steroids as there is many misleading information on thiscand these are one of the reason why many refrained to get proper cancer treatment. Its important to remember most of child cancer steroids side effects are reversible. Its for temporary only and early treatment can help manage side effects better.

Mahiyaa do get some of side effects from steroids including mood changes where she felt more anxious and emotional than usual and felt tired. Mahiyaa had fluid build up causing swell in her legs, face and weaker bones causing her pain and her muscles was very weak until she couldn't walk or climb stairs. This make us and all her loved one very sad but we tried as much as we can to keep her happy and positive. Her head hair thinning due to chemo effect. This is usually not noticeable by other people but it was upsetting us but it is nothing compare to what she is fighting for. We keep reminding our self to not show her anything and make the changes into something positive.

The second day once we discharged from hospital Mahiyaa and me did one thing that we wanted to do for so long. We both love long hair, but we always wanted to donate out hair to HOPE foundation to make hair wig for cancer patients who have lost their hair permanently due to chemotherapy or radiotherapy . So this is the time, we feel. I didn't want Mahiyaa to feel weird or left out. I wanted be with her in her every transformation. Information on How to donate Hair for Cancer Association will be in my next post.

Day 1 of 33 days Chemotherapy course (Induction Phase)

As we were informed earlier, the diagnosis of leukemia cases tends to evolve. Doctors initially provided a prognosis and treatment plan based on the first imaging or biopsy, but these can change as they gather more information about our daughter’s cancer through further testing. After the diagnosis, we were told that the leukemia appeared stable and fell under the low-risk category, with a year of chemotherapy expected to be sufficient. However, according to Dr. Chan, this could only be confirmed after additional bone marrow biopsy results.  

Because this type of acute lymphoblastic leukemia (ALL) grows quickly, Mahiyaa needed to start treatment and chemotherapy as soon as possible. It was best to do this at a center specializing in childhood cancers. At the hospital, Mahiyaa began receiving chemotherapy drugs designed to kill as many leukemic cells as possible. The goal was to put the cancer into remission. While this is not a cure, remission allows Mahiyaa’s bone marrow to start producing healthy blood cells again. Most children go into remission after a month of treatment. This phase is called the *induction phase*.  

Her first chemotherapy session lasted only 30 minutes and was administered via IV. Mahiyaa was so unwell that she made no effort to leave her hospital bed. She was just five years and eight months old, yet the fatigue and drowsiness caused by the drugs completely drained her energy. Chemotherapy irritated her gastrointestinal (GI) tract, so I ensured she had small, frequent meals, while the doctors kept her hydrated through IV fluids. The nurses regularly checked her vitals to monitor for any adverse reactions to the medication.  

The following day, with the doctor’s permission, my husband and I took her outside for a short evening walk. The fresh air lifted her spirits slightly, even though chemotherapy had completely wiped her out.  

During the induction phase, Mahiyaa will undergo 33 days of treatment, which includes eight chemotherapy cycles, four lumbar punctures, and two bone marrow biopsies. We will continue to receive updates on her risk diagnosis as her initial bone marrow biopsy undergoes further mutation analysis in the lab.  

Light at the end of the tunnel.

When we received the news, we were devastated. However, as parents with a positive attitude, we approached it as if we had been given a golden opportunity to cure our daughter, and we decided not to miss this chance. What other option was there but to become expert caregivers and advocates on behalf of our sweet child? We were determined to ensure we were making the best decisions for her and providing the best care possible.  

We prepared for Mahiyaa’s bone marrow biopsy and sought opinions from four other pediatric hematologists and oncologists from across the country, with the help of our family and friends in the medical field. After three days, the biopsy results confirmed that our princess was diagnosed with **B-cell pediatric acute lymphoblastic leukemia** and needed immediate medical attention.  

The doctor explained the chemotherapy treatment plan to us and urged us to remain patient as they identified possible risks associated with the diagnosis to improve the chances of remission. These results would be determined during the induction phase of her treatment.  

She was started on hypertensive hydration treatment via IV to reduce the risk of tumor lysis syndrome during chemotherapy. This condition occurs when large amounts of tumor cells are destroyed quickly, releasing harmful substances into the blood. Due to her extraordinarily high white blood cell count, the acute chemotherapy treatment carried risks of damaging her kidneys, liver, or causing potentially fatal complications. Mahiyaa required close monitoring before, during, and after her chemotherapy sessions.  

We had to stay in the hospital for another 10 days. During my stay with her, I gradually explained her diagnosis and the reason for our prolonged hospital stay. I told her she had some very bad bacteria in her blood that were making her severely ill and that she needed to be really strong to help the doctors fight the bacteria with medicine.  

Her innocent face quickly turned to fury as she became angry at the "bacteria" that were keeping her in the hospital. She kept saying she would fight them. She missed her younger brothers, Kayhan Bala (4) and Deehan Bala (2), as well as her virtual classroom friends.  

How could I explain to her that she was fighting a disease far more dangerous than bacteria or any virus?

Fear Of Unknown.

No parent is ever prepared for what happens when they arrive at the hospital. Seeing Mahiyaa so unwell and having no control over the situation completely threw us off balance. The first thing I realized was that we were not alone. There were many other parents and caregivers on the ward going through the exact same thing, and the staff at SJMC Hospital were amazing in supporting us during this challenging time.  

Our friends and family kept her happy with gifts and phone calls. We made sure she didn’t feel vulnerable or afraid during her treatment. We made lots of TikTok videos and played games to keep her spirits high. After spending 10 days in the SJMC pediatric ward, I tried to keep my mind focused on staying positive. There were no clear timelines or guarantees about how things would progress.  

Some mornings were difficult, followed by better afternoons. On days when Mahiyaa was very sick, we held onto those small moments of hope, telling ourselves we would get through this. Most of my time was spent surfing the internet while Mahiyaa rested. Rather than grieving and crying, I began learning as much as I could about her diagnosis. Knowledge was my way forward.  

When Mahiyaa was discharged, I knew I would need this knowledge to care for her, help her cope with the side effects of the treatment, and advocate for her needs. I needed to understand her condition well enough to explain it to anyone involved in her healthcare. Learning about her diagnosis also helped me appreciate how far she had already come on her journey, especially as I became her voice. I strongly believe that what we don’t know can truly hurt us. The fear of the unknown often stems from a lack of information, so I spent a lot of time researching online and speaking with people from medical backgrounds to gather as much information as possible.  

I learned that, in Malaysia, the percentage of pediatric cancer cases is very small compared to adult-onset cancers. This lack of prevalence leads to lower awareness among parents. Education and information are crucial—they can help parents recognize early symptoms and bring their children to the right medical professionals for diagnosis and treatment.  

Understanding that childhood cancers are highly treatable brought me a sense of calm. I also want to highlight that many parents’ fears about chemotherapy are often carried over from what they have seen in adults. However, I’ve found that children generally tolerate chemotherapy much better than adults. Instead of considering alternative therapies, I recognized the importance of medical advances and evidence-based treatments to provide immediate help and keep Mahiyaa’s cancer under control.   

The Dark Day

Our daughter, Mahiyaa Bala J, was usually a bubbly and vivacious child a diva to many and loved by everyone. At the end of May, over the weekend, I noticed she seemed tired and unusually uninterested in her favorite activities or the weekend itself. I assumed she might just be exhausted from her busy schedule of online classes during the MCO. However, within the next three days, she developed a fever. As parents, we felt something wasn’t right. Following our usual practice, we immediately brought her to the ER. At that time, we were primarily concerned about ensuring her fever wasn’t due to the Covid-19 virus. 

The medical officer (MO) on duty ordered a blood test for her. Shortly after the first blood test, a nurse came and informed us they needed to conduct another test as the previous results were unclear. This surprised us, but we complied, and another blood test was conducted. An hour later, the MO informed us that Mahiyaa needed to be admitted as her blood results were concerning. He referred us to a pediatric specialist and forwarded the blood reports to a hematologist. We were shocked to learn that her blood readings were unstable, with her white blood cell (WBC) count over 1040 million when the normal range is only between 5-11.

Due to the MCO, only one parent was allowed to stay with her, and I decided to stay. After completing a Covid-19 PCR test, we were admitted to the observation ward. Only God knows how many medical websites I browsed that night, trying to understand what might be causing her unusual WBC count. Most of the results pointed to Hepatitis B or leukemia. My maternal instinct told me something was seriously wrong, and I couldn’t shake the fear that this wasn’t just paranoia. The more I read, the sicker I felt. I don’t know how I made it through that night. 

The next morning, the hematologist came with devastating news—our princess most likely had leukemia. However, they needed a bone marrow biopsy to confirm the diagnosis.  

"Can you imagine what it’s like to hear those words come out of a doctor’s mouth?"  

As a mother, I tried to remain calm, but internally, I was shattered. I never imagined that a healthy, breastfed child—who had excellent prenatal care and never missed her vaccinations or routine check-ups—could suddenly have cancer at the age of 5 years and 7 months. It felt like my world had collapsed beneath my feet.  

While the doctor asked me questions about her symptoms and our family’s health history, I stayed composed in front of Mahiyaa. She had no prior symptoms like bruising, frequent fevers, or bleeding, aside from this fever, which was her first in over a year.  

Having spent more than eight hours surfing the internet, I was somewhat prepared for the diagnosis, even though it was incredibly difficult to accept. One small relief was learning that with proper treatment, the outlook for children and teens with leukemia is generally positive.  

I called my husband to share the diagnosis. I tried my hardest to hold back my tears and fears. Somehow, I managed to deliver the news. We were both silent. In that moment, we thought we could suppress our emotions, but only God knows the pain we felt in those few minutes without saying a word. I knew he was breaking on the other end of the line.