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.