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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 informed earlier, the diagnosis of Leukaemia cases tend to change. Doctors gave prognosis and treatment plan after the first image or biopsy, but then change the prognosis or treatment after gaining more information about our daughter cancer from further testing. After diagnosis, We informed that the leukemic staple and in fall under low risk and just a year of chemo should be sufficient but according to Dr Chan this only could be confirmed in further bone marrow biopsy result.

Because this type of Acute Lymphoblastic Leukaemia (ALL )grows quickly, and Mahiyaa needs to start treatment and chemotherapy as soon as possible. It's best to do that at a centre that specializes in childhood cancers. Mahiyaa will go to the hospital and get chemotherapy drugs to kill the all the leukemic cells that doctors can find. The goal is to put the cancer in remission . This isn't a cure, but it will let Mahiyaa bone marrow start to make healthy blood cells again. Most children go into remission after a month of treatment. This is called induction phase.

A first chemotherapy was only for 30 minutes. It was given via IV .Mahiyaa was so sick that she made no effort to even leave her hospital bed. She is just five years and eight months old. She felt fatigued and tired. The drugs make her sleepy and drowsy. I made sure she feel better enough with small frequent meals as chemo can irritate the gastrointestinal (GI) tract and Dr make her feel hydrated with IV. The nurses came in and check vitals and make sure she isnt reacting with the medicines. 

The next day me and my husband brought her out with Dr permission. A evening walk would make her feel much better as chemotherapy would have wipe her out. There will be more chemotherapy during the induction phase. Overall 33 days and there will 8 chemotherapy cycle, 4 lumber puncture and 2 bone marrow biopsy. We will be informed about Mahiyaa risk diagnosis time to time when Dr received her initial bone marrow biopsy which going through mutation in lab.

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.