I was going to write about our cookie baking session at Stephanie's house but I checked my email and received an email which saddens me greatly. Another NB child. Another Stage 4. Another devastating mother.
I really cannot bring myself to even write about what went on last Sunday anymore...
It is no secret that I am a receiver of many help and is still in the process of receiving help from kind souls everywhere. In the most ironical way, I seem to be the most inappropriate person to say that I want to help but I do.
3 weeks ago when Charmaine went in for her Bone Marrow Biopsy, I saw Dr Kushner. I dont know what came over me but I decided to let the words flow out of my mouth (even though I know it is probably very silly). I asked Dr Kushner, "Is there any way I can bring the antibody back to Singapore?" Dr K let out a big laugh and had a smile on his face which seemed to say "Just what this ignorant young lady is thinking here!?!?" Than he went on to say, "impossible, we dont even produce enough for our patients here." Than I went on to probe further, "I remember you said that the drug formula has already been sold to a drug manufacturing company who is looking to commercially produce them. Maybe I can find out more?" He laughed again and said maybe Dr Cheung would be able to talk to you more.
So that was it. I felt silly. And I felt stupid. And to make matters worse, that day wasnt a good day either. So I just got more depressed with my own stupidity. And hence I decided to just shut up and not probe anymore. Nonetheless, the thought is always lingering at the back of my mind...
Bumped into Dr Kushner again 2 weeks ago and first thing he asked was "So did you manage to get your special package (antibody 3f8) back to Singapore yet?" I was embarrased and replied, "Was it really that funny? I know I am being silly but I just had to ask." I know he meant no harm at all. And I agree that he has every right to laugh because I am indeed being very silly.
The receipt of this email once again reminded me of how close and yet how far I am to being able to pay forward all the kindness that has been showered onto us.
It is frustrating. Many neuroblastoma kids in Asia who can afford a little bit are probably in Singapore since we have one of the best surgeons and yet the higher hopes eludes everyone else who simply cannot afford the USD $350,000 upfront deposit.
I have never been a science student in my entire life and the best medical knowledge I have is feeding medication to my kids when they have a fever or flu. Charmaine's experience has taught me more medical knowledge than any textbooks could teach me. Yet, what I know doesnt even amount to a fraction of what most NB parents in the New York knows.
I know that 3F8 is a clinical trial drug. But hey, talk to the parents in New York and they will tell you that if 3f8 is not effective, why is the rest of the states using antibody treatment as well?!?! (CH14.18 is also an antibody which rides on the results of its predecedant drug, 3F8 - pardon my very layman explanation here).
Be it clinical or not, it gives way better hope than the opposite of having none. I am in a NB group in FB which is based in UK and they have recently organised a conference for which doctor(s) from MSKCC will participate. Because one particular parent who has lost their child to neuroblastoma is fighting very hard to convince other parents of NB kids in UK that 3f8 is indeed very good.
Am I begining to sound like a salesperson here? I guess what I want to say is that whether 3f8 is good or not, it is simply not fair when most of the other unfortunate kids do not even have an option to reject the treatment. Because the treatment is not even available to them in the first place!
And yes, I feel bad. I feel guilty that my little girl has the chance to be here whereas the other ones couldnt.
I know being a one man show, I cannot accomplish anything at all. I can only say, I can only wish. I have no idea how. I have no connections. I am not even in the medical profession to begin with! I do not know what the laws in Singapore state.
I do know that there are many kind souls out there.
Maybe I am just remotely hoping that amongst one of the many kind souls out here, someone may have an idea. Maybe, just maybe someone would be kind enough to point me to a direction... I know that it may take years and years before we can even come close to having the same percentage of survival in Singapore... And I know that maybe some of the doctors may have already been looking into doing whatever they can...
But I feel oblige to mention it here.
As much as I am still fighting my little girl's battle with this terrible monster, I am sure that Charmaine would want other kids like her to have the same chance as her too.
Maybe, just maybe... if there's anything you think I am in a better position to find out about... please do not hesitate to email me.
I do not talk to the other NB parents as much as I wish, or as much as I should.
I am always hanging out with my 2 kiddos and living in our own little world because I am tired, because I am drained... because I dont dare, because I just dont like to talk much anymore...
Although I should focus my every ounce of energy on my kiddos. But we are here today because of everyone of you who helped in one way or another. I may never be able to repay this gratitude to each one of you personally, but I want to pay it forward... I dont know how but I really want to...
I'm going to end this here as my heart is still heavy after receiving that email.
I am utterly sorry for writing such a depressing note... forgive me.
Love,
Cyn mommy
7 comments:
Cyn, just pray. And do your best to help. You are helping by creating awareness as there are many followers in your blog. I believe there will be an answer soon. Meanwhile you may share your experience with that mother, i believe she will want to know more info and support on how to fight this monster.
God Bless.
Hey Cyn Mummy, Well done on making it this far, and great idea on trying to push for making this more available in Sg. I don't know where/how this can conclusively be acheived, but perhaps first of all a chat with Charmaine's consultant in Singapore to find out the feasibility/possibility, and what has been done by the medical community so far. Perhaps take some reference from the mummy in UK who is attempting to push for this as well. Or maybe rally people to start a charity for NB sufferers in singapore/region, so that kids like Charmaine can have the same chance as she had. By going public as you had done, you have already raised so much awareness, so is a really big step forward. Good luck and all the best to you, Charmaine and Jase!!
maybe we can create a group to help raise funds for these kids like charmaine. i am sure that many of us would want to help. :)
My dear Cyn,
You know some of us have to go through certain things in life to experience it hands on. Then would we be able to reach out to others who are suffering the same pain. I'm so proud of you that you are starting the ball rolling.
Regardless of how belittling when you voice out your concern to the doctor and how ignorant you may feel, you are doing something good for others (Singaporean children suffering from Neuroblastoma) in spite of what you are going through yourself.
We will pray for a breakthrough.
You never know who is reading your blog and the word is already spreading and planted. It will come to fruition and not return to you void! Have faith.
Love J
Hi Cynthia.
We are with you and your family in prayers. So continue to have faith in God and be strong for Charmaine and Jase.
Blessings,
Janice
Hi Cyn.
I´ll be praying for you and your family. :) Hang in there. A step at a time. You´re AMAZING at having gone SO far. Keep remembering that! How far you´ve come. As for the paying it forward, I believe everything in its time. Focus on what you can do right now....Supporting your daughter in her treatment. I think you already have too much on your plate.
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