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Please help my daughter “yenyen” fight brain cancer

  • First 3 monthly MRI

      20 July 2024
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    In the beginning of July 2024, yenyen’s been assessed with the Neuropsychological team and she is diagnosed with Global Developmental Delay, and she will have reassessment in two years time because she is possible to have Intellectual Disability, ASD, ADHD in the future. I’ll make sure to reach for support that she needs to reach her full potential.

    She turn 5 yrs old 16th of July, and her psychologist recommend to send her to kindy for 6-8 months for an Early intervention, and see if she is going to regular or specialized school. She is getting excited to start kindy again, but she have to get her bloodwork after a month. See if she can start her immunisation.

    She had her first 3 monthly MRI after her treatment. And thank God! That there is no growth, stable and looking good. She will have another MRI after 3 months. Hoping and praying that it will be stable forever. 🙏🏻

    She will be seen by her audiologist, as she may need to wear hearing aid.

    She will have further testing with her endocrinologist, because of her cortisol hormone still low. She will be seen by speech therapist to help her with her speech and language.

    She still have feeding tube on, and eating a little by little. We are with dietician.

    Trying to wean her keppra.

    Just taking everything slow, and hoping for the best outcome 🌱

    Again, thank you very much for all the support and prayers. I’ll keep updating this page even it’s closed. We only have one wish for yenyen. Is to be CANCER FREE! 🌱

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  • 1st Craniversary

      13 June 2024
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    Today marked Tala’s 1st Craniversary. This is the day when Tala had her 1st Major Brain Surgery (Craniotomy) I still remember the day, it feels so fresh to me. I can’t even imagine how we did it. The overwhelming emotions is bursting everywhere. All I ask is I want my daughter to wake up after the surgery. And I thank to God Almighty, NeuroSurgeons, Doctors, Nurses etc for giving all their best to save my daughter and giving her second life. And I appreciate all the supports from family, friends, community, organizations, and even people we don’t know for always praying for Tala.

    Latest update for Tala

    She is having some behavioral challenges, she had been assessed by the NeuroPsychological Team and waiting for answers.

    She is going for further testing because her cortisol hormone is low.

    She is still in NG Feeds, and she is starting eating a little bit by bit. And hoping to get her appetite back and we will taking it slow because i don’t want to pressure her too much.

    She’s no longer wearing headwrap, there’s still some fluid build up on the side but it’s stable on the size. 🙏🏻 Thank God ❤️

    She often told me “mommy i’m blessed” “mommy i’m strong” “mommy i’m pretty” ❤️ .. She is.. indeed!

    Her 3 monthly MRI is coming, and i’m hoping for the best result. Please keep praying for my daughter. 🙏🏻

    You have been in our journey for the past year, it’s incredibly a challenging journey. But what I learn from her is.. to never give up, and keep moving. ❤️

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  • Purple Heart 💜

      6 April 2024
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    I’d like to extend my appreciation to everyone who donated into my daughter’s page. Thank you for all your support and prayers. You became part of our journey, you have seen, and read our story. I still remember the day how I rushed my daughter to ED. I still feel that emotions I have when i found out about my daughter’s diagnosis. I still see my daughter’s face in my mind how she battles complications during treatment. — But, we have been through that. She’s with me. I can slowly see my daughter getting better each day. And I will do my best for them, we will live life to the fullest! I thank God for guiding us in this journey, to my family, starship family, friends, family I met in the ward, even people that they didn’t know us, to my community, to everyone who supported us in this journey, to Child cancer foundation, thank you very much. 💜

    #EveryBeadHasAStory

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  • Tala’s End of Treatment 🎉💛

      14 March 2024
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    13/3/24 is her removal of central line. And end of her treatment. 🎉

    Her central line is with her for atleast 8 months. Dressings needs to be change once a week. Which she really hates :/

    What a relief that it’s now gone, she had small surgery to remove it. She can now play in water which she really likes to do.

    She had MRI 12/3/24 I spoke to one of the Doctors regarding blood tests result. One of her hormone called “cortisol hormone” is low. She had cortisol hormone test done. And results came that her adrenal gland works as it should and they suspect it’s the brain that doesnt send the message to produce that hormone. And I met with one of the Endocrinologist, she will get tested in 4 weeks. For now she needs to have hormone top up whenever she fell sick.

    MRI Results— The tiny spot on the artery from the last MRI way back in November 2023 is still there. Good news is, it’s stable and no growth.

    I’m happy with the result. May be there’s still tiny bit there. But I am glad that my daughter overcome all this challenge/trials. From multiple surgeries, chemos, radiation. From 7.5cm mass on her right frontal lobe to 0.9mm.

    She will be having MRI every 3 months in the next two years. I claimed it! That it’s stable and no growth. God will make miracles. Whatever happens, I’ll surrender all my worries to God.

    Thank you very much Everyone. Too many to mention, 💛🥹

    I’ll keep you guys updated for sure. You guys are part in our journey. And part of Tala’s Triump

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  • Rad Grad 🔔

      7 March 2024
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    Today is Tala’s End of Radiation Treatment, it’s definitely not an easy 30 rounds of treatment for her. But she did it like a star. She will have her MRI on Tuesday. Thank you so much everyone for always keeping my daughter in your thoughts 💛

    I’d like to thank the following #CakeMakersInAuckland

    Delights for Sponsoring Sarah&Duck cake

    Dreamcakes for Sponsoring Bluey cake

    VeryMerry Cakes for Sponsoring cupcakes that is given with the hardworking staff of MV1 Radiation Oncology Team

    Margarita Gin Yusay-Elizalde for Sponsoring cupcakes that is kindly shared with the children and parents admitted in starship (Blood & Cancer Ward)

    Thank you very much!! you made my child very happy with your creations, and thoughtfulness.

    I 100% recommend these bakers, not only they make beautiful cakes, but they have beautiful heart. - Thank you so much.

    I’ll be updating after her MRI next week. For now we just want to enjoy and cherish every moment that we don’t have to go everyday in hospital. Tala will have more happy moments spending at home. Going for a walk, and playing with her brother 👩‍👧‍👦

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  • Meet Nickolas- My youngest :)

      2 February 2024
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    I just want to share about Nickolas condition, my youngest child. He was born in Nov 2022. He didn’t pass his newborn hearing test. He is Diagnosed with Unilateral Hearing Loss on the left ear. He didn’t tick all the boxes on his left. His right is fully functional and they called it “a good ear”. I sent him to get him more hearing test, but after few tests, result is all the same. Yesterday is his follow up check up.

    Based on his follow up check up, results still the same. He is responding well to the sounds, and my son is a healthy, and playful little guy, you don’t even notice that he got UHL.

    His Audiologist discuss it to me all the options, and Nickolas is now on the waiting List to see ENT, he is going for GA, they will put him to sleep to check him thoroughly, I’m hopeful that there’s no underlying causes of this. I have accepted it from the beginning that it’s a UHL.

    Please Include him in your thoughts, together with my daughter Tala, I am sharing all this story of mine because I want everyone to know that there’s always light after the tunnel. I don’t want to live in denial, this is my faith.. this is our faith. We just have to learn how to live with it. And keep going.

    And If I were to choose again, I will choose them over and over again.

    I am not perfect, I get burn’t out. I’ll get teary, i get tired. I’m not the super perfect cancer mom you may think. But I want to do all the best I can to overcome this trials.

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  • Radiation Treatment

      29 January 2024
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    Tala started her treatment 24/1 It’s an emotional first day of treatment. Looking at my daughter fall to sleep while she’s on my lap under General Anaesthetic. And she’s going through this 5 days a week for 6 weeks. Total of 30 rounds of Proton Radiotherapy treatment. Thank you very much everyone for keeping my daughter in your thoughts. Please pray for her. 💛

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  • Post High Dose Chemo MRI Result/Treatment Plan

      29 December 2023
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    Update: MRI Result post high dose chemo/Treatment Plan

    Thank you everyone for including my daughter in your prayer, thank you for all the overwhelming support. 💛

    On the 19/12 Tala had her MRI after she finished her high dose chemo. Her oncology doctor talked to me, after they had a discussion with Tala’s neurologist. They have seen a suspected residual tumour measuring almost a cm. They are unsure if it’s a tumor or a scarring.

    “I’m kneeling down O’ Lord, please heal my daughter according to your will. Please guide all the doctors, nurses and everyone in the hospital to give them guidance, and strength to help all the children that needs them.”

    Today, I had a discussion with her radiation oncologist doctor. Regarding radiation therapy, we went through all the short term and long term side effects. Tala is having 30 sessions of Radiation, for outpatient in 6 weeks. All under General Anaethetics. She is going to have her mask fitted on 5/1 and a CT scan right after.

    Please pray for my daughter, I know that God is always with us to guide her. And give her more strength.

    Amen.

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  • High Dose Chemo/Stem Cell Transplant

      6 December 2023
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    It’s been quite a while since i have post a update for Tala’s condition. After she recovered from her dental surgery. We started her high dose Chemo, this is our 4th week in Starship. It’s been a rocky road, but I am thankful because she is recovering well from all the complications she had during this time. I thank everyone who prayed, keep praying and supporting me and my daughter in this Journey. Tala is a real fighter, I can feel that she wanted to win this battle, and i can see the pain she is going through but she doesn’t complain to me. She is a resilient little girl, I wish i can take all her pain. But I know that God is with us in this Journey. I surrender all my worries to him. I have built my faith and trust.

    In the past weeks been in Starship, she had a very bad mucositis, and having temperatures, vommiting, her bum is much better this time. She got broken bums but it’s not that worst like the previous cycles. She is scheduled for her next MRI scan on 19th of December. Please pray for my daughter’s MRI result. 🙏🏻

    She still have CSF Leak, hopefully that her condition pseudomeningocele will be manage by putting a headwrap, if not she have to undergo another surgery to put a VP Shunt. I keep praying, that hopefully it will recover and bypass the need of a shunt. Please pray with me. Thank you very much

    To my Daughter,

    You are loved,

    You are wonderfully made,

    You are beautiful,

    You are a masterpiece,

    God has a great plan for you.

    I love you, we love you 💛

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  • Dental Surgery

      3 November 2023
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    Update: Dental Surgery(Under General Anaesthetic)

    Last week, I have notice that Tala has been irritable, crying, and try to bite her finger. She seldom tell me what’s painful, or what makes her uncomfortable. So I have to check her from top to toe. And her molar i notice a hole, and the inner skin from

    Her cheeks is red, And I thought to nyself that she must’ve been having a toothache. I have raised my concern to her oncologist/dr’s because if she is going for her high dose chemo which is scheduled on Monday 6/11, this is going to be a risk of infection. Because of the hole— and during chemo she will probably have the mucositis (again) esp on her mouth. I’m afraid bacteria can go to the hole which can lead to infection, can be life threatening because during chemo all her bloods will go downhill. I’m glad I followed my guts, her doctors/onco/dentists are afraid for the infection too. She is going for her Dental surgery Monday 6/11. And wait till she recover and her dental surgery heal, her high dose Chemo will be pushed forward.

    Photo of her with her beads of Courage, this is her journey so far. Gives me goose bumps. My 4 year old child has been through a lot. But I know that God is always beside her. To guide her in her journey. Please include my daughter to your prayer.

    #fightagainstbraincancer

    #courageousTala

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  • MRI Result Post 3rd Surgery

      13 October 2023
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    Update: MRI Result

    Tala had MRI yesterday, her MRI looks good, almost no tumor left. There’s only tiny bit on the artery. And she had a small stroke, which they have told me that it’s not a long term problem. After her recovery she will have the High dose Chemo with Stem cell transplant then Radiotherapy. After that she will need to have another surgery called Cranioplasty, because I was told by her neurosurgeon that the bone flap from her previous craniotomy is starting to dissolve. It’s still fine for now. But after her treatment they will need to replace it with a Metallic Implants.

    Thank you everyone for being part with our Journey fighting with a rare type of Brain Cancer.

    Let’s beat this cancer together! 🫱🏻‍🫲🏾💛🎗️

    #onedayatatime

    #jesuslovesyou #yenyen

    #CourageousTala

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  • MRI Results/3rd Surgery

      11 October 2023
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    First of all, I’d like to thank everyone who keeps praying for my daughter. And I want to share her MRI results..

    After her 2nd cycle of Intense Chemo, she had MRI and thank God that the result shrunk the left over tumor 75% from it’s size.

    After her 3rd cycle of Intense Chemo, she had an MRI and there’s not much change from the previous MRI.

    We had a chat with her Onco that if she will have two more cycles, the tumor may not change much. And she will get a lot of complications from chemo, because she gets really sick and they are afraid her organs may not handle it. And suggest to have another surgery to remove a little bit of tumor from the left overs. — and we agreed that I think that is the best way.

    I have talked with her Neuro about the Plan, risks and possibilities.

    She had her 3rd surgery yesterday 10/10, it’s a 6 hour long operation. After her surgery I was told by her Neuro that they have removed as much as tumors and they cant see anything left in their eyes. And they are happy with it. And she will have MRI tomorrow 12/10 to see what’s left.

    <Photo of her eating popsicle after she had surgery>

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  • 3rd Cycle of Chemo

      21 September 2023
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    This cycle is the most painful cycle, because on her 1st week, she had again a mucositis and a sore bum, vomitting etc. Later we transferred to isolation because she got positive from Respiratory Virus. On the 2nd week, She had fever, and she got her blood culture check, they found out that she grew Bacteria on her blood.. which scares me most.. She had high fever, as high as 40.3 degree. — Numbers i haven’t seen before. Her high fever lasts for 6-8 hours before the Paracetamol take control. Her blood culture is now on 4th day, and we are hoping that the result is negative from bacteria. On our 3rd week, I noticed that she is irritated/sting when she pee, and she get upset, i raised my concern and she had a bladder scan and renal scan, I’m glad that they didn’t find something serious on the scan. Yesterday, she had a serious nosebleed that lasts 45minutes, she had a platelet transfusion.

    In regards of her sound on her heart, doctors still hear the sound(murmur) on her heart, she have appointment for her heart doctor on the 28th of Sept. And she is going for her MRI tomorrow that is under GA. We hope for the best outcome.

    Thank you everyone for supporting and non stop prayer for my daughter Tala “yenyen”. God bless us all :)

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  • Second Cycle of Chemo

      10 August 2023
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    On Saturday 5th of July, we were finally discharge after spending 3 weeks in the hospital for Tala’s 1st Cycle of Chemo. She really had fun playing on her playroom. She loves playing playdoh. She started eating a little bit by bit. And her sore bum is getting better. We are going to start her second cycle on 10th of July. I’m hopeful that there won’t be any complications. I pray to God that Tala will recover fast for her second cycle. :)

    Today 10/7/23 we are admitted to starship, and now on 2nd cycle of her Chemotherapy. Thank you very much for all the prayers and support. Me, Tala and behalf of my family extending our appreciation to all of you. May God bless you all.

    She is a very lovely little warrior :*

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  • Getting back on track :)

      2 August 2023
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    After 2 weeks yenyen have an hour to be free from her lines, and can able to slowly walk to the playroom, at the moment she is a bit unstable when walking. And needs supervision.

    I’d like to extend my appreciation to New Zealand Children’s Transplant Support Trust for funding her cute little unicorn bag that especially modified for Tube Feeding. Thank you ❤️

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  • 1st Cycle of Chemo

      29 July 2023
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    We are now on her 1st Chemo, She lose her appetite and have a NGT to nourish her. She developed mouth ulcers and mucositis which is a result of Chemo. She is now on antibiotics and morphine. And because of her vommiting, doctors and her dietician suggested to drop the feed from 45ml/hr to 5ml/hr. But she is getting intravenous nutrition through her line. She is having temperatures, and because of her platelet counts dropping she had a blood transfussion. And her hair is starting to come off. — She is always my beautiful girl. :)

    Thank you for all the support and prayers. 🙏🏻

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  • Biopsy Result

      14 July 2023
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    On 12th of July, my daughter had MRI to see if the tumour left is stable or growing. And thanks God that the tumour is still the same size. That day as well the result of the biopsy came out. Tumour type is Central Nervous System Neuroblastoma FOXR2 (CN NB FOXR2) its a rare tumour and based pn studies it’s mostly on Young children. She is going to start her chemotherapy on 18/7/23 Tuesday, and ny daughter going to have the central line on Monday, together with that she is going for Ovarian Tissue harvest. Because of chemo therapy, this may affect her to have difficulty to conceive in the future. They ask me if I want it or not— I opted to get this done. Because I want my daughter to have a own family when she grow up. Atleast a chance to conceive. Not a zero chance. Also they have explained to us what are the possibilities and complications that may happen on treatment. I just pray to God that everything will be fine. Photos of her with her new haircut. She loved it and told me “mommy I like my hair.. I’m so pretty” She is indeed pretty, she’s such a brave little princess. Thank you for everyones prayer and support ❤️

    Yenyen’s fight. Is our fight ❤️

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