After hugging my three lovlies, I am in JFK now waiting for the flight back. Today had been a long day for all of us. We arrived in MSKCC @ 10am thinking that all we need is to sign the consent form for 3F8. However, we only managed to meet up with Dr Kushner at 12pm, after our lunch in cafeteria.
After about an hour of discussion with Dr., Mommy Cynthia came out ifnorming us that we have to take charmaine in for injection to kickstart the 3F8 immediately. We were not prepared, and definitely not Charmaine. Feisty she is, she knew that it is to make sure Monster is forever out of her, she allowed herself to be carried by Mommy. A little while later, we were sent to the Pharmacy to collect the five viles of injections as well as a few other medications. These 5 viles is to prep her body for white blood cells generation (i think) or something to increase her white blood cell count. It has to be injected daily ... by... Cynthia herself! Princess Charmaine now has a tube-like plastic around 1 inch long on her left arm so that Cynthia can access to it easily. It has to be refrigerated and kiasu us decided to tape every vile our name on. Small it is at 1ml, it comes at a hefty price! From the photos, you can see the cost of it.
Charmaine told JaseJase that she had to take injection daily, and looked real upset about it. An injection a day, a step away the Monster it will be, I told her. Then, the amusing part is, the kids started to decide on the number of steps to the black dustbin that it should be. Too little, too near. Too many, too much for Charmaine to take.
We were also given a form to sign and Dr has briefed Cynthia on what the study would be. Nothing that had surprised her given that Mommy had spent alot of time reading up, weighing the options before making the decision for 3F8, and then, the fund raising. In RMH, Mommy Cynthia also took time to chat with fellow parents to understand the pain involved.
Initially, we were recommended of a 4 rounds, where 3 weeks of resting is needed, which means, around 4 mths (if there is no infection). Dr. has now revised to 8 or as long as she has not developed HAMA (resistance to the mice injections) There might be an extension of the duration, or Dr might keep the resting period shorter so that she can finish her course asap. However, based on the image below, you can also see that the resting period after 4 rounds would be 8 weeks, which means that we could also do a fly-in and out every 2-3mths. This is still an open-ended one for us because everything is still as tentative as it can get. Our princess health status, reaction to drug etc are needed to be monitored closely.
After the 6-8course, we are required then, to do a follow-up for at least 2 years, before we can conclude this 3F8 study. It seemed a long fight as the 6-8course would be approximately 24mths, and another 2 years of follow up but whatever it is, the first 4 would be the most important ones.
Pain, is the most common thing the kids will feel.
Neuroblastoma, as the Monster is named, involves injecting 3F8 into the body over a period of less than 90mins, typically 15-30mins. However, the excruiating pain is felt the entire day, if not longer, for older children or young adults. Morphine is given (luckily our princess is not allergic to it) and even so, they will still feel that pain and vein popping (as we heard). Cool Oxygen will also be blown to the face to make them feel better. While we have been warned and it never would be painer than to know that your most valued one is in pain, it is all worth it, a parent said. 4-8 rounds of 3F8, with the possibility of extending his/her life. You will fight for it.
Recently, there is also a talk by a survival where he was diagnosed with Neuroblastoma and now, 30 years old, alive and living. Hopes are aplenty. Which reminds me of a Turkish family conversation this morning. What do we live for? Looking at the kids in the playroom, where they all seemed to suffered. Fight. Fight for a day to live.
I leave with a heavy heart, because, I will not be there, when our princess win her fight, when our princess has dumped the Monster into the black rubbish bin - the smelliest and stinkiest, as they call it.
Gambatte-ne!
(And I wish, I have taken a video of her doing this gambatte action... )
Love, Charlene (back in SG)
2 comments:
Dear Charmaine, the following few weeks may not be easy for you...but we storngly believed that you can make it.
Yes, hopes are aplenty! We wanna to see our feisty princess in 30, 40, 50, 60 & many more years from now :)
Charlene, thanks for your update & welcome home.
Cynthia, hang on...the miracle is round the corner, we will pray hard for you & family.
Charmaine: After reading what Charlene jie jie had written, my heart ache for you. The pain you will be going thru is just beyond my imagination. But pls hang in there no matter how painful it is, for your mommy and kor kor and yourself. And of cos the whole bunch of us here, waiting for your return.
Cyn: You are a brave mommy. Even as a mother of two myself, i don't think i can be as strong as you. The road ahead may be filled with heartache but it will be worthwhile. When you get too tired to walk on, just fill your tots with Charmaine growing up together with Jase and you have many many happy years thereafter with them, i think you can draw your strength from there. I may not fully apprehend what you are going thru, but do believe my tots and prayers are with you days n nights.
Jase: I believe that you are the best korkor charmaine can have. And do help your mommy to take care of charmaine, k?
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