PLEASE VOTE to help us save our children's lives.

Tuesday, September 7, 2010

I hate to watch Nick suffer so.........

At 10 last night a CT was ordered. Nick's pain was presenting like appendicitis, constant, gut wrenching with no relief for 14 hours. Dilaudid not managing it well. Nerves kicked in as they said with and without iv contrast. Very quickly after the scan they came to the room and asked...he doesn't have is appendix does he? Duhhh.. Well, we see something where his appendix would be..."inflammatory changes".... Pass the puke bucket please! I immediatley thought... new tumor, we are done, this is it. She left the room and as I tried to not have my teeth chatter and legs shake the next 20 minutes felt like eternity. Then she came back in and said the attending radiologist diagnosed him with a condition called Typhlitis. Hmmm... that doesn't sound like tumor... breathe.....

It is an acute inflammation of the area around the appendix at the very bottom of the intestines that occurs in post chemo neutropenic patients. Treated with aggressive antibiotics quickly there is a good outcome. So Jim and I left feeling ok........ got back to the RMhouse after midnight. Immediately went online to google Typhlitis. First words I see "often fatal" "high morbidity rate" "dead bowel"... Ok... teeth chattering resumed.

Got up here this morning and asked about all of that horrific wording I read. They ASSURED me that at THIS hopital they see it a lot in neutropenic, heavily treated patients (that would be Nick) and they have very good outcomes. The path to get there is hell though. The pain will not go away until the inflammation does. Guess what will help that? a Friggin WHITE blood cell count... which ours is on the way DOWN, not up... We are on day 8 chemo. The anti-fungal and antibiotics will help too, but white cellls are magic and we are no where near getting those right now. Please, please pray for Nick to ride this storm... it is not an easy one. He has to have a pain pump at a very high rate to just manage the pain. He can't have anything by mouth for two days... Even water was coming right back up.

Stem cells infused tomorrow, that will help (in 10-14 days). GCSF shots onboard..that will help (10 days or so). antibiotics on board... pain pump on board.... now for this condition to not get any worse... which it could, and that wouldn't be good.

This is such a perfect example of toxic treatments having bad side effects. This can't go on for Nick much longer. We need these antibody trials OPEN!!!! So I beg everyone again... text your vote daily..... tell your coworkers, fraternities, sororities, churches, civic groups.. They want to have a project of hope to focus on this month for Childhood cancer awareness month?? then set a daily email and text reminder and help us out, please!!!

TEXT: Text is : TEXT PEPSI (73774) and then Text 102653.

The above journal entry is an update from a fellow Neuroblastoma mommy from NYC.

For a long time, I've been following their journey, marked with numerous miracles, inspired by their never-give-up attitude, cried and cheered alongside with them silently.

Nick Franca's mom is an amazing mother who is now inpatient at MSKCC with Nick and yet, has never stopped thinking of ways and methods to fight Neuroblastoma.

I truly am humbled by her efforts.

Charlene has tried voting from Singapore but apparently, it doesnt work. I know its a long shot but if you happen to be in America, and is reading this update now, please help us to spread the message to all your friends, families and whoever may be able to vote! Help us, this sum of money may literally save the lives of many kids whom need more treatment available to them desperately.

And if you happen to be a Singaporean with friends, schoolmates studying in America, please help us to inform them of this campaign. Anything, every vote counts. We are not talking about making anyone richer but literally saving lives of kids whom are fighting a very hard battle of their lives.

Many many decades ago, Leukemia is a horrible cancer with a very low chance of survival. But research and funding has remarkedly changed that. WE NEED tons and tons of fundings to research for better and more effective methods of treating neuroblastoma. Your vote today not only will save the many children currently fighting neuroblastoma but the many many thousands that will be diagnosed with Neuroblastoma in the many many years and decades from now... Hopefully, one day a cure for cancer will be found and no one will ever have to go through all these sufferings, no matter a child or an adult.


Updates about Charmaine

Last week, Charmaine completed her MIBG scan on Wednesday. Dr Kushner had an appt scheduled with me right after her scan. We met but we couldnt discuss anything about her treatment plans; this is because her MIBG scan looked questionable.

MIBG scan is the most important scan that we do for kids with Neuroblastoma. Although it is not the only scan we use to diagnose our kids, the most weightage is placed on the MIBG scan, amongst the others such as MRI, CT and Bone scan.

If you recall, our last MIBG scan in Singapore was taken in July @ SGH.

I saw the scans myself and was beyond relieved to see the scans as totally clear. It meant so much especially after the MRI scare that I had.

Anyway, I emailed Dr Kushner on Thursday, requesting him to email me back with the MIBG results once he gets them so I can actually function. Being the sweet doctor, I got a call soon after from his secretary, Stephanie.

Here are her words...

We went from "CLEAR to MUCH IMPROVED".

I didnt cry.
I didnt scream.
I didnt stop functioning.

I inferred the results as being NOT CLEAN, with some disease.
Most certainly NOT WHAT I was hoping to hear.

Although I had always prepared myself that the isotope (contrast/dye) they use in Singapore is inferior in quality compared to the one they use in MSKCC, to actually hear the words "MUCH IMPROVED" still threw me off guard. And the sadness is still overwhelming.

While we didnt discuss any plans last thursday with Dr Kushner, he did mention casually that looking at the scans, he thought it is most likely that they will propose 2 more rounds of chemos. However, it is pending the final report of MIBG.

While I know that I should count my blessings that "MUCH IMPROVED" is still WAY BETTER than the alternative, I just couldnt bear the thought of putting Charmaine through more chemo. I will do whatever necessary to fight but its just painful and scary to deal with chemo here alone in NYC. Nonetheless, I have to do what I have to do. I just keep repeating that sentence over and over in my head.

This week is Labor Day holiday on Monday and as part of Charmaine's work up, she will need to have a MRI of her head, CT of her abdoman and MRI of her legs from Wednesday to Friday.

Depending on Charmaine's bone marrow biopsies results, we should most probably have a plan by end of this week. PLEASE PRAY THAT HER BONE MARROW IS CLEAR.

However, I am already mentally preparing myself for Charmaine to start chemo anytime soon.

Aside from the unexpected result from MIBG, we are doing good. Made some new friends in the house as alot of our old neighbours have returned home either after completion of treatment or they had become angels not needing treatment anymore.

Jase and Charmaine seems to be enjoying time and life in NY. Especially Jase, who has matured and grew more independent. He would go down to the playroom himself and play the entire afternoon with new friends and volunteers. In fact, he has grown less picky with food and is eating almost everything I cooked or bought.

On the other hand, Charmaine is still recovering from all the fasting that she had to do for all the procedures with General Anesthesia last week. She is not eating as much and is rather fussy with her choices as well. And I think she is home sick, missing her traditional chocolate rice bread from the Singapore confectionary! I almost feel inclined to ask Charlene to help me go beg for the recipe from our favourite confectionary shop!

We have almost recovered fully from our jet lag and is finally sleeping at normal american hours but we still wake up faithfully every morning at 6am! Haha, guess its not such a bad thing because the early riser gets to get the most! :-)

Stephanie, one of our best friends in NYC drove us up to Korean Town in Flushing and I was just thrilled to see almost all the familiar sauces and food stuff that's available! I think she was amused, seeing how wide my smiles and eyes were! We joked that now we can finally migrate to NYC! Haha. THANK YOU STEHP! LOVE YOU!

I’m loving the nights where we get to sleep on our bed together as a family and wake up every morning as a family. I think I can do this everyday and will never be bored of it! I truly cherish such moments. It is probably hard to imagine how much happiness such a simple routine can actually bring me but it is just so true. Its been so long, back in Singapore, everything is always in a rush. Things somewhat slow themselves a little whenever we are at NYC. Not sure if its because both Jase and Charmaine gets to spend every moment together, with nothing else to bother them. Their holiday mood is so infectious it gets to me too!

While chemo is looming ahead of us, I choose to escape that thought and just focus on my happines for now, one on my left, one on my right, and talking, giggling and laughing non stop...
If only life is just this simple...

Before I end this, I would like to just do the mommy thing and NAG again. Or rather, I am pleading for your help.

Thinking of everyone back home and wishing that you could feel and share in our happiness...

Cyn mommy


Mama Joan said...

Hi all, the vote can be made thru facebook. I have managed to do so. Pls try...

Cyn, don't worry, God is in control. I know its hard but TRUST GOD!

JulietJas said...

Dear Cyn,

Praying for Char for her bone marrow scan. And praying for you to have the strength and grace to continue to be that amazingly strong and loving mum!
Good job Jase kor kor! You are a star! So proud of him that he is willing to try different food now. And being so brave to venture into the playroom and interacting with other children all by himself.

Hugs...LoveAunty J

cyn said...

Dear Cyn

I don't know how much comfort my post will bring to you, but I feel that "much improved" is better than no improvement. I remembered you mentioned that the isotope test used in Sg is much inferior to that used in NYC, so at least the test in NYC is giving you a clearer picture of what is happening to Charmaine.

I feel that it is better to use a higher quality and get a clearer picture that to dleude oursleves into believing that Charmaine is completely clear. At least with this test, you can discuss and decide how to proceed, rather than to trick your mind into believing that all is fine. I would rather err on the side of caution than to throw it entirely to the wind.

Don't worry. Have faith. You are constantly in my prayers. Be thankful for what you have right now and it's really a comfort to know that Jase has matured so much and has grown so independent. Take heart. Having a positive mind is already a step closer to healing and getting well. Charmaine needs you to think this way so that you can "infect" her with it and help her to press on. We are behind you all the way!

Cyn fr Sg

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