JJ Medical Journey

I said to my children this morning, " Today is your abang Joey's birthday, but he was not here to celebrate it with us. And Jovy replied, " He is now busy celebrating it with God up there. You know mum, he'll get bigger cake then mine. He'll cut the very same carrot cake but taste waaaaaay better then what we have here. I asked why? Because angel's baker baked it for abang.

Oh my boy.. sweet little boy.. who couldn't make it to his 9th birthday on earth, I gave birth to you, I loved you first, I love you still, I always have and always will.

Happy Birthday my baby JOEY..
Never a single day I went to sleep without you in my pray.
Mummy miss you very much.

Kelmarin hari memperingati para arwah dan pemberkatan kubur. I thought after 5 years passed my heart was finally fixed and healed as they said, time will heal... yet there I was, sobbing like a child beside my Joey. Rest well boy.
Mom loves you.

It's now easier to send JJ Medical Journey a message.

17.07.2009-17.07.2017
Happy Birthday my Joey.
Thought and prayers for you in heaven.

Till we meet again.

Happy Chinese New Year to all staffs of Chang Gung Memorial Hospital Taiwan, specially goes to Dr. Tang Her Jaing and doctors team, Wendy Yuchuan, staff-nurses of 6L : Ruby, Peiyin, and the rest I can't recall their English names. To BMT teams, Ivy Wu and the rest, to the parents : Eva cho, Kitty Wong, Anna Wong, Sandy Lim, Shelly Mitsuko, Wiwien, and parents we met along the way...

Many Happy returns and Happy Chinese New Year, blessed with healthy and prosperity.

After sometime...
Semalam saya kemas barang-barang hospital JJ, terjumpa dengan 2 'vest desperal' yang saya gunakan untuk menyimpan mesin chelation 8 jam JJ. Tahun tahun sebelum 2013, kebanyakan pesakit Talasemia dibekalkan dengan ubat chelation untuk membuka lebihan zat besi dalam badan yang dipasang menggunakan jarum suntikan secara berterusan selama 8-12jam. lagi lama disuntikkan lagi memberi kesan. sebabkan suntikan sangat menyakitkan, kami selalu lari lari berkejaran keluar masuk bilik untuk menangkap 2 budak JJ yang masa tu baru berumur2-3 tahun. Hehe.. kalau diingatkan balik sekarang, rindu juga. tapi time tu, ya ampun.. geramnyaaa...

Sekarang chelation lebih mudah, tapi dengan kos yang sangat mahal. Pesakit dibekalkan dengan Exjade, dlm btk tablet diminum bersama jus. Mudah-mudahan peruntukan KKM untuk pembelian Exjade berterusan kerana terlalu ramai keluarga yang memerlukannya. kalau kena beli, mahal sampai beratus-ratus. Kalau tdk silap, last box Exjade Jovy haritu, harganya dlm RM600++, sekotak, keperluan pesakit p**a selalunya lebih dr sekotak.

Apa gunanya chelation? Apa desperal, apa Exjade? dan sebenarnya banyak lagi, tapi baru setakat itu saja JJ sempat guna haritu. Ada L1 etc etc.. Sebenarnya, zat besi berlebihan dalam badan pesakit Talasemia itulah yang menyebabkan mereka jadi kurang normal daripada budak-budak yang lain. Kulit jadi gelap adalh yang paling ketara kelihatan. Tetapi zat besi berlebihan itu lebih memberi kesan kepada kesihatan pesakit. Zat besi akan melekat pada organ-organ sehingga boleh menyebabkan kematian. Ehehe.. saya rasa mcm suster p**a.. suster tdk bertauliah. hehe..

Kalaulah masyarakat sekitar yang punya anak yang sakit seperti kami kami ini sedar akan kebinasaan yang boleh disebabkan oleh zat besi berlebihan, mesti semua ibubpa berusaha suapaya anak-anak mereka lebih berdisiplin dalam pengambilan chelation. Tidaklah payah doktor-doktor marah ibubapa sebab ferritin anak naik meroket sampai beribu-ribu. mungkin anak-anak nampak sihat, tapi dalaman siapa yang tau... sama-sama kita menjaga kesihatan..

Salam Jumaat..
Semalam post pasal kita ibubapa insan terpilih. Eheheh.. betul lah. Bukan semua orang mengalami rare condition mcm kita kita ni. Terp**ang pada kita mau bagi positif thought atau sebaliknya. Tapi lebih baik jika kita positifkan minda, sebab anak-anak kita s**a tak s**a, mau tak mau tetap akan ambil kehadiran wajib dkt hospital setiap bulan, kalau bernasib baik... kadang tu, ada ibu yang kena bawa 2,3 orang anak sekaligus untuk tranfuse, tipu? Ehhh betul la. Pusat Day care daerah saya, banyaak ibu atau bapa yang bawa anak bertranfuse. Paling banyak sy pernah nampak 3 orang.. masih kecil-kecil..Kesian kan, ibu yang membawa tu mahupun anak-anak yang dibawa. Kadang time makan, nampak 3 tray hospital bederet atas katil..Tidur p**a bergelimpangan atas katil. Tapi nampak meriah. Hehe.. Yang tdk bestnya, kalau bekalan darah tidak mencukupi, terpaksa balik kemudian hari.

Apa yang rarenya? menyusahkan adalah...
Kerja kita kerap kali minta MC, cuti sini sana. Kalau bos ada empati sikit, bolehlah lepas senang, kalau yang jenis kuku besi, alamat cuti tdk bergaji kita.. Anak lagi ponteng sekolah, ketinggalan pelajaran, macam-macam.. Salah tu. Betulkan tanggapan anda, belajar menerima keadaan seadanya.. Anak kita cuma Talasemia, kalau Kanser? Mereka lagi menyedihkan dan menyakitkan. Kita dibanding dengan mereka sangat beruntung. Anak-anak kita masih boleh bermain gembira, tidur lena, makan berselera. Tapi pesakit darah yang lain, belum tentu sesihat anak-anak kita.

Tapi memang betul, kerja terbengkalai, Bos p**a marah-marah, kawan-kawan sekerja mula bisik-bisik belakang, si polan tu memanjaaaaang absent kerja. Cikgu-cikgu p**a mula persoalkan anak kita. Apa? Ponteng lagi? Haha. Tdk mengapa.. Sabar banyak-banyak..Kita kan rare.
Haa kan, kita btl-btl rare! kesabaran kita lebih tinggi, kekuatan kita luar biasa. Sisipkan satu bahagian dalam hati, hidup ni spt roda yang berputar putar putar, kadang kita dibawah, ada masanya kita berada diatas. Bak kata FB, kita sit back and releks saja, karma tu kalau kita bernasib baik, Tuhan bagi kita tingu cash payback dia bagi. Tak usah la kita simpan dlm hati. Kita kan rare.... Hati mesti mo kena kuat, tahan maki nanti karang-karang berhenti la drg tu mengata bila sudah penat. Jadi abaikan sahaja.

Apapun, hari ni hari Jumaat, mungkin ada yang berreview, ada p**a yang bawa anak tranfuse. Safe drive, hati-hati dalam perjalanan, semoga semua urusan dipermudahkan semuanya.
Amin...

Hai semua...
Sorry lama tdk update apa-apa.
Jovy's condition syukur, membesar sihat dan nakal yang terlebih sekarang. In fact, dia baru saja meraikan birthday transplant yang ke-4 tahun 12.12.2016 minggu lalu-lalu. Simple celebration saja, ucapan syukur dan kenduri kecil. Tahun depan dia akan masuk year 1, sekolah saya mengajar. Senang pergi dan balik sekolah sama-sama, senang makan masa rehat sama-sama, pendek kata senang dipantau. hehe...

Sebenarnya hidup kami tidaklah sibuk sangat, cuma kadang-kadang berpikir juga mau post apa. walaupun jarang bagi update, ramai juga yang personal text tanya macamna dan apa perkembangan terbaru Jovy. Masih review di taiwan kah dia, masih review di Likas kah dia, even ada juga yang tanya kalau-kalau dia masih bertambah darah selepas proses transplant haritu..

Ok.. Jovy sekarang dalam proses untuk sembuh. Tdk berani saya bagi confirmation dia sudah sihat.. Yang sy boleh pastikan, jawapan yang tepat bagi soalan, sudah sembuhkah dia? adalah, dia skg dlm proses untuk sembuh. Tapi syukurlah dari lepas transplant sampai sekarang, dia sihat dan tdk pernah lagi bertambah darah. Pasal review, hospital Taiwan mengalu-alukan kalau kita dtang sana buat medical check-up tapi keadaan dia stabil dan kami rasa hosp Likas boleh uruskan semua medical check-up Jovy disini. Kepakaran hospital sama saja.. Yakinlah!
In-fact juga, Jovy baru habis ambil vaksin last bulan Oktober lalu. Semuanya buat di Likas. Sekarang semua ubat-ubatan clear. mudah-mudahan berkekalan. Amin..

Cadangan saya bagi ibubapa yang anak-anak baru didaignos dgn penyakit Talasemia, jangan terlalu susah hati la ya. kalau ada adik beradik yang lain, bolehlah buat cross matching untuk bone marrow transplant. Kalau tiada adik beradik, mungkin boleh consultant dulu dengan doktor pakar kanak-kanak di tempat anda. kalau perlu doktor cadangan, boleh personal text, kami tahu ada beberapa doktor pakar yang saya pasti dapat membantu ibubapa membuat pilihan dan tindakan susulan selanjutnya yang lebih tepat.

Semoga maju jaya semua ibubapa.
We are the chosen one ! Berbangga lah. Hehe..

He reached another milestones. Celebrating his 4th years post transplant.
12.12.2012-12.12.2016.

He was about to enter a new phase of life.
Oh how time flies!
Thank you doctors, nurses and staffs of Hosp Keningau,
Hosp Likas and thank you too to Hosp Chang Gung, Taiwan, Jovy's transplant doctors Dr. Tang Her Jaing and the team.

Thank you for make it happen for Jovy!
We are forever in debt.

Positive thoughts really help.

My sweet baby boy turned 6 couple of days ago. This morning when he was drinking milk before he off to school, I catch myself starring at him and amazed how times flies fast! He have changed so much from the days of being a newborn to fully grown up boy! The days seem to be passing by so fast with it he was growing quicker than my camera can capture. You are so beautiful sweet boy, please don't grow up too fast! Happy 6th birthday!!

Special Chinese New Year wishes to all who celebrate it.
Specially goes to Chang Gung Transplant Medial Team of Taiwan- Dr Tang Her Jaing and the team, Nurses at BMT room, Nurses at 6 Floor, Likas Onkology Department , Chinese family and friends. Wherever they are. "May you be blessed with overflowing happiness, success, health and prosperity this coming new year"..

Best Wishes from Jovy's family.

Happy New Year 2016!
I was looking for some In-Vitro Fertilization info this evening when I bumped to this site: http://www.chang-gung.com/en/features.php?classid=38 .. Have some look.

International Medical Center - Chang Gung Memorial Hospital

Christmas has never been about what's under the tree but who's around it , and for all our loved ones that we wish were still here with us. I'll hold my kid a little tighter and thank God for my blessings. The many that I have.

JJ Medical Journey continues to teach me about what really matters in life. As a mom of a young son with serious health challenges, I hope the journey continues to help guide the path of hope, love or comfort to others rather than dwelling on the void in my heart from my temporary separation with my Joey, wasn't as painful as last year yet still unbearable.

May God richly bless our hearts and minds this Christmas with glimpses of His holiness. Merry Christmas to you all who celebrated it and your beautiful family.

Jovy have reached another milestone yesterday 12.12.2012 to 12.12.2015 and make it 3 years post transplant. Took photo with mama, my sweet sweetest MIL. She never lost hope and never look down on us looong time ago.When people around underestimate us.. It was her, who showed me firsthand the importance of people helping one another esp along the way to JJ's medical journey. That's all I needed to hear, simple words that lift my spirits up...May God bless her with good health and peace in mind...

When life gets harder, remember that all of the obstacles we face today will pass sooner or later. Things will change again, soon than we think. Be brave with our life so that others can be brave with theirs..In some ways it is a life lesson for me and for us..

Praising God for Jovy's 3rd year of successful transplant.

It’s been two years since he left but there was not a day passes that I don’t think of him. The grief is constant and I’m not always sad when I do. That isn’t to say I don’t hurt anymore and long for him. It was still difficult to talk about him without getting emotional. He was one of the sweetest gift a mother can have. The gift that broke and rebuilt me.
How I pray I get to keep you just for a while longer.
Boy, let me whisper at you closely
“A mother never buries her child, she keeps them in her heart forever” I love you.

Yesterday while Jovy's monthly check-up, we get the chances to met up with another Thala parents. One with successful sibling transplant which was conducted at one private hospt , Sime Darby and the other was about to go through the process.
It's amazing, how quickly we get along very well like we know each other since forever.

To all new friends, parents, doctors, nurses that I actually met and make friends with all along the way, I thanked you for the endless support we give to each other, the sadness we've shared, the joy every time they hit the right vein, the story we giggled, the doctors and nurses we bad talk :) , and everything related to blood, needles and life, It's nothing but ties us in a way we don't understand.

Love to all.

Dear parents out there.
My little effort when my children were first diagnosed with Thalassemia. I was totally lost and i hv no idea of what Thalassemia is. So i've started my online study. My teacher was Mr. Google and Ms. Experience. They both teach me great lesson. Please do yours, then you'll understand how to cope with Thalassemia.

I did email BMT centre of Cure2 Children Italy,
Dr Poala Polchi IME Italy,
2 private hospital at China,
1 centre known as CHOP,
Until i made my decision to Taiwan.

Good luck parents. God bless.

It's been a while since my last post.
well, we're good, dad, mom and Jovy.
Just to drop by to say "Hi".
Hug to all!!

17.06.2009 : Happy Birthday dear Joey Jovien.
Don't hv your favorite carrot cake son..Only 1 funny candle of 6 shapes as you turned 6 today.. but then mum just hide it away, Guess your mum still can't faced it...
Rest in Peace. My prayers on your special day.

Happy Birthday. I love you.

Yes! You're invited.
So see you there!

After his 1st vaccination~~
Re immunisation today.

Jovy hit the milestone. 5 years. Happy birthday boy.

We're getting ready for Jovy's birthday on this coming Saturday.. while busy thinking of how to fix things, so sudden my mind goes to late Joey....
Throwback 2 years ago, when we're celebrating the very same event, the excitement was too much!!
They'll running around, opened the ice-box like thousand times just to mk sure the cake still there!

I will nvr finished cleaning the messy room, no party deco, nothing! Sometimes we end up just blowing candles and singing birthdy song, just 4 of us.. but then, the kids will not stopped talking bout thier candle blowing party evnthough only 4 of us there. A sincere feeling u can feel when they kissed u and said: Thank you!

We never missed or skipped thier birthday, since they were borned! Nvr question and don't bother if we can't gv them grand one, as long as we hv them one,it's more than enough.. I will keep reminding myself,that life is unpredictable...nobody knows when is the last celebration. Nobody knows, if we still there a year later to sing the song we love to hear, or nobody knows if they're still here to celebrate it with us, next year!

Some people get very wrong impression of celebrating birthday. Heard a mother said, it's just one way to show off...Well, I can't afford to show off, I hv nothing left since I dedicated myself to the boys' health. I live life as what I am today,but 1 thing I can assure u, much happier than forever!

I miss to say 'Hapy Birthday' to the boys, as they do celebrated it together before. No matter who hit the milestone, both will claimed
'That was my cake'!!

Mengapakah kita perlu menderma darah?..