She is still fighting..

I apologize for taking me five and the half years to write another post! It's ridiculous.

Where did I left off???? Where to begin? Oh yea, Izzy is now 10 years ago.  What a blessing!

Most of you known Izzy has half a heart baby in first 5 years of her life.  During the next half of her life, she is not only a heart kid but also diagnosed with auto-immune disease, was hospitalized for weeks and weeks. Doctors were confused, she help to take the doctors to a different level of their practices.

"Your daughter is very complex." - Doctor X

"Izzy is very tricky, we need to think through the options of treatment." - Doctor Y

"I don't have the answers right now, I need to reach out to the Immunologists and the Infection Disease specialists and I will get call you as soon as I have the answers. " - Doctor Z

Those are the quotes from the Specialists for the past 5 years but I have to say, they are all very trust-worthy, very caring and very on top of their games. We have good medical team for Izzy here. The Goodmans are extremely BLESSED.

So, what's Izzy's current episode?

Izzy is currently, officially diagnosed with Chronic EVB (Epstein-Barr Virus). To simplified it, it's Mono virus.  I am sure some of us had mono virus before, it would take about 4-6 months to recover from it but for Izzy, it might last for a life time due to her auto-immune issues.  The virus lives in her B and T cell, if it's not treated or leave it in the system for too long, it would turn a monster. You know what I mean, right?

EVB was found on and off the in her peripheral over the past 4 years but it was now only found in her bone marrow, the number was high. It's messing up how her bone marrow works. She has to have Bone Marrow Biopsy every 2-3 months which also mean she will need to be sedated and as most of you know, Izzy was with half a heart. Procedures under general anesthesia is bad... just bad!!! Besides all those medical reasons, this is one of the procedure she is very nervous about.  She fought the drug every time they injects good amount of strong meds in her system.  It was hard to see her crying, screaming "No!" to unconscious. I had to tell myself that we are lucky that we have the way to detect and treat it.

I had a long chat with one of her specialist yesterday, they recommended a few options:

1) Sending her to Cincinnati Children Hospital to get treatment, this treatment is targeting T cell which UNC Hospital have no technology to do.

2) Bone Marrow Transplant.  This is where her little brother Isaac can help.  They need to do some test on Isaac to make sure that they are a match. Yay, super Hero Isaac.

3) Same old treatment we did all the time. Gave her huge dosage of Rituximab which is targeting on her B cell. Which is my less prefer treatment. We been using this method for years, did it work? if it does, she wouldn't be in this situation.

So, here is where we are. I am hoping to get a final decision once all the Specialists agreed with each other.

Whatever it is... Izzy is in good hand. She is loved and taking care by many.  :)

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Thought from the parents: Like we always say giving up is not an option, we will do anything to keep her happy and alive. :)

I promise I will stay posting regularly from now on. Thank you for reading and love to all.

Happy 1825 Days, Baby Girl!

1824 days ago today at about 9 pm, NaiNai, PakPak, daddy and I were sitting in the living room in our north hollywood's house. Pakpak was tunning his guitar , about to sing a song he wrote for you. I felt the sharp pain again that I had the whole night a day before except this time was every 7 -8 mins apart. I thought I just need to go to the bath room.  Sat there for couple sec, went back to the living. PakPak started to sing the song he wrote for you, " Isabeau" .Just that you know, it was beautiful.  Ask him to sing it for you when you sees him next time. 

My pain wasn't getting any better, I excused myself, went back to the bathroom.  Sat there for a few mins, daddy came in to check on me. I told him and insisted him not to tell NaiNai and PakPak coz I didn't think you would come since the doc going to induce me in a few hours.  But daddy worried, went to tell NaiNai.NaiNai had him called the doctor. NaiNai came in sat next to me in the bed, held my hand, told me just squished her hand everytime I felt the pain.  After talking to the doc, daddy walked in and said, " let's pack, doc wants us to check in now."  

We moved pretty quickly, got in the car and the next thing I know was i was in the hospital bed, covered with blankets over blackets, daddy and Nainai were sitting on chairs next to my bed, and Pakpak was the sofa next to the window.  A Russian nurse walking in and out monitoring your movement. I told the nurse, " this is really NOt fun at all.." and her answered was, "this is called labor!"Dr. Gumb came in 30 mins later, looked at the chart , turned to us and said,"We need to have a C-section." She didn't think you can wait any longer. We never talked about that option, it just freaked me out listening to her explaining to us the risks of having C-section. I started to shake really really bad, nurses came in to do the blood work and put in the IV.

 Another 25 mins passed by, couple nurses came in and said, " IT's time!"  they handled daddy some scrub, had him to put it on and waited outside the operating room.  They pushed me in, it was freezing cold in there. Still shaking really bad, 3 nurses had to hold me while they injected me with epidural. Once again, I thought this was not fun at all. Daddy walked in a few mins later, I was still covered with blankets but my face was so itchy so the first thing i said to him was, "Could you please scratch my nose?" This is another famous line that night. 

Anyway, Dr Gumb asked, "Are you ready?"  then she continued explaining what she was doing while doing it. I didn' feel a thing, no sure how long later, I felt the push and pull... 

Then we heard, " It's a girl, 1:32am..."  a tear streamed down my face. 

 I wasn't sure why.. But one thing I know was we have a beautiful baby girl even tho I didn't get to see your face until 16 hours later. We were born 1825 days ago. Today is your day.. a day of celebration .. and today is also a day to remember all the people who help you to get here... who walked side by side with you.. who care and love you..


Happy 1825 days to our beautiful daughter!

1st bday, auntie Becky was holding you!

2nd bday, pictured by auntie Ida

3rd bday, the banner behind you was from Christopher.

4th bday, pictured by Karrie (Christopher's mommy)

5th bday, Pictured by Miss Linda

A letter to Isabeau: Even tho you have half a heart

Hello baby girl, 

You asked me this morning if you can bring a box of your fav. candy cane to school to share it with her friends. I said sure but only if you get the permission from you teacher before you share it. 

Got to school, after giving your teachers the flowers to show your appriciation, you asked Miss Usma about sharing the candies,she smilled and said, "Of coz!".  You started to share your candies with each of your little friends in class. You got one yourself, then put it in your cubby. 

Couple seconds later, you saw a little boy sitting in the corner, you went to Miss Usma to try to get a candy for him but Miss Usma was busy talking to one of the parents. You stood there for a sec then walked towards your chubby, grabbed your own candy , walked to the boy and gave it to him. 


I was in a "WOW" reaction, I am so so so so so proud of you baby.  You don't mind giving up your fav candy for your friend. I have to say I think what you did was really really awesome.  That was super nice of you. XO! 

You are a giver, you made me want to give you more then what you need.  I am extremely happy and can't wait to share this little thing you did with everyone who would be proud of you too.  

All I want to tell you is, " Even tho you have only HALF a HEART, You have a big and good heart. So be proud of yourself. "  

Love ya, 
Your proud Mama

A letter to Isabeau: Media interviews

Dear baby girl,

Last month (September) had been really crazy for all of us.  As you know, we did the Heart Walk by AHA this year (2012). [If you remember it].  :)  American Heart Association invited us to spread the words by using your amazing story. Daddy and I agreed to do so even tho we were super busy. We both think it's time to do what and why you are here for.

We had to go back to all the pictures of you when you were really little, when you were in the hospital with your chest open. you messed up feets due to all the poking, tubes sticking out from your body and those EKG wires attached to your body.  WOW, painful.. really painful to even look at it. I have no idea how many nights I cried myself to sleep but it was all worth. Because we get to help people , some of us need to be braved, need to get up to tell the stories.

You will be surprised how much a story like yours would be able to help others. To comfort them, to give them hope, to tell them everything will be ok and to tell them giving up is NOT an option.  Most importantly is to show them never ask why it happened but instead to face it, and to do what needs to be done.

So, we got total of 4 interviews and a speech at toyota charity campaign which was to encourage to help others. The 4 interviews were included LA-18 interviewed by Juliette Zhuo, KTLA 5 by Lu Parker(Miss USA 1994), NDT-TV by Mandy Huang and XXXX ( still trying to find out who I talked to at the Heart walk) .. Yea.. funny huh?!

I think the interviews went ok. They had to summarize your stories into 3-5 mins time. They did a good job in sending out the important message.  I also glad to see you had fun with Lu Parker, you guys played princess tea party for a while then balls all over your room. Seeing you jumping up and down ensured me that we were doing the right thing to let you go public.

Here were the schedules of when the media aired your story:

1) LA-18: Sept 24, 2012  |  5:30pm

2) KTLA 5 : Sept 28, 2012 | 9:00am & 6:00pm

9am news
- http://www.youtube.com/watch?v=YbJ1B44uR90
- http://www.youtube.com/watch?v=22GTVIFz4jU

6pm news
- http://www.youtube.com/watch?v=kLVB4GwWWLc
- http://www.youtube.com/watch?v=LUa-Emp_LdA

3) NDT-TV : Sept 30, 2012
- http://www.ntdtv.com/xtr/b5/2012/09/30/a772800.html

4) XXXX: Unknown

One last thing is there was a line I loved by KTLA5 is "This little girl teaches the world scars are beautiful." One day you will question why these scars, you might mind, you might hate it but little girl.. this scars are  you and because of these scars, you helped thousand and thousand of people you didn't even know.And that scars of yours has many many stories to tell. So be PROUD of yourself.. you are BEAUTIFUL in every way just like your mother. LOL!!!

Love you always, Your Mama.

Do you know Tooth Fairy has a name?

September 28,2012

Izzyboo lose her first tooth today.  Craig told her the tooth fairy's story, told her to look for money underneath her pillow when she woke up in the morning.

She interrupted , then asked," What's tooth fairy's name?"

I overheard her from my home office, I yelled out with a laugh, "It's Tooth's fairy, Izzybooboo!"

"NO, she has a name.  All fairies have name." She said it out loud then continued, "Just like the winter fairy's name is Perry winkler, the garden's fairy's name is Rosetta, the light fairy's name is iridessa..."

"So, what do you think Tooth Fairy's name is?" Craig intterupted her.

" emmm..emmm..emm.. I think the tooth fairy's name is Olivia!" she smiled really really big.

I was like dang, I worked for Disney for so long and I didn't even know all those disney fairies has their  own power.

So guys, the Tooth Fairy's name is OLIVIA.  :)

Tonight is harder then any other nights, this month is harder then any other months

Tonight is harder then any other nights:

Got to spend some alone time with Iz this afternoon.  On our way to get some afternoon snacks, she said, "Mommy, I like you a lot!"

I thought it was pretty cute and sweet, " Aww, I like you a lot too.  But why do you like me?"  I asked.

"Because you always stay with me, give me all your time, take good care of me, be in the hospital with me..." she said all that without thinking twice.

That was the sweetest thing ever!

Tonight, lying down next to her, looking down her beautiful face, I couldn't help to think what would happen to me if anything CRAZY happen to her especially with her heart condition. What's her future which  I HATE when people asking about her future and all my responds were, " do you know your future?"

All those crazy thoughts went away when I felt her wrapping her hands over my arms. But I still feel my heartache.... It made me wonder why am I feeling this kind of pain which I haven't had for a couple years.  I think it was because I have to constantly try to remember what is her heart conditions, her surgeries and how I felt all about Isabeau as a spoke person for AHA this month.

I certainly don't like the pain I am feeling but REALLY.. If being a spoke person for AHA can help them to raise more money to safe lives.. why not, right?  As I always say Isabeau is here for a reason and Isaac is here for another.He is here for a big sister and I know he will be looking after her for us 20 years later .. 30 years later or may 40 years later.

So, I think this month is harder then any other months.

Giving up is NEVER an option!

2 days ago, Iz's gymnastic's coach called, told me that she is planning to add Izzyboo to her big kids's classes. She wanted to know what I think about it.

Of Coz, I am more then ok with that.  Super happy cause all hard works of hers finally paid off.  It reminded me about a year ago when I first enrolled her to a 3 years old beginner classes.  She couldn't do 80% of the activities the other kids did. Other parents saw her, they would ask me how old she was. Some parents saw her scar on her chest, they would ask if she can do gymnastic? Some would have that pity look in their faces. I wasn't sure how I should feel but one thing for sure was I accepted who she was and I thought even tho she did nothing but she was happy to be here.. that's already worth a million dollars.

But, I don't want Iz to feel bad of not be able to do most of the activities, I would tell her, " Iz, mommy is so happy that you did so so so good today." Then she would just smiled and said , "thank you!"

A month later, I moved her to take private lessons. Have the coach trained her one on one. It wasn't easy for her. She was still pretty weak from her last surgery. Then I asked her if she really wanted to do gymnastic because I really don't want to force her to do anything that she wasn't even interested. Without thinking twice, she said YES!  I told myself  if this little 3 years old not giving up, why should I? Out come is really not the most important thing, what important is the process of it.

And today, a year later... she will get train with bigger kids.  How cool is that? I am a proud mama once again...

Yummy Legs

This week achievement!

Nice and Fast

He LOVES LOVES LOVES with his sister!