Last friday when i recieved the phone call from MSKCC, I cried tears of joy and was just overwhelmed with relief and happiness. Although clear scans and NED doesnt mean the end of the battle for us, it still brought comfort knowing that at least the scans are clear. I was literally screaming and joying in joy and wanted so badly to blog about how I felt! Because I pull everyone along with me in this rollercoaster ride, its only fair that I pull you along at the highest peak of my happiness. However I decided to sit on it while I brought the kids out for a breather.
And by evening when we reached home, I received a message from George (Elizabeth's father) informing me that Elizabeth had relasped for the second time. I cried. And than all of a sudden, I couldnt blog anymore because I was too affected by the news... Elizabeth hadnt HAMA positive and although it had also been a crazy week for them, with scanxiety, they were looking forward to returning to NYC for their 4th cycle of 3f8. Alas, all is not what we had wished for.
Different kids start and follow different schedules for their 3f8 treatment here. And I was very lucky to have the Westberry family with me. We were the only 2 families who started our very first 3f8 cycle for our girls on 17th August and we should have been together every cycle for the whole of 2 years. Ironically, both Lisa (Elizabeth's mom) and me even counted that they would both receive 15 cycles to complete the treatment of 2 years. They provided much comfort to me when I felt all alone in the hospital room and always offered assistance to me. It felt like a very cruel joke but it seems like none of us is continuing as planned. :-(
And it kept me on my toes... Even though both Charmaine and Elizabeth had clear scans in August and completed 3 cycles of 3f8, anything is still possible with neuroblastoma. Sighz, the thought is very stressful and upsetting.
Anyway, I lived the past few days trying to be normal while always worrying about whats next. Did I mention that when I first heard the news from the hospital, I hugged Charmaine and told her she has once again won her monster! The first thing she said was "YEAH!!! Can we go back Singapore?" HAHA. I just smiled and said "Nope, because we have not seen snow yet!"
As for whats next, I am basically thrown off tracks twice and hence is feeling unsettled and anxious. When they called me to inform me of the HAMA results, the Nurse Practioner said that they will repeat Charmaine's blood test in 3 weeks and in the meantime, Charmaine has to take her cycle #3 of Accutane for maintainence. So I had mentally prepared myself for the blood test that was supposed to take place on 23rd Nov.
Just when you thought that you are getting into the new routine, routine changes again!
On Tuesday, I received a call from MSKCC informing me that they want to start Charmaine on chemo next week!!!!!!!!!!!!!!!!!
I went numb and pale again. Though it wasnt as bad as when I heard the HAMA results, it was bad enough to send me into a zombie mode again. :-( Thats why I have been so quiet. *sighs*
HAMA is measured using some scale that I am not sure of. All that I know is if the counts show that its 1000 or above, the child is considered to be HAMA positive. I enquired what is Charmaine's level but they refused to say. Other parents also said that the team of doctors have never divulged the numbers to them before. Anyway, I managed to find out that Charmaine's numbers are WAY HIGH, like WAY WAY HIGH above 1000. Which means that her immune is good. BUT, almost too good for her own good now. :-(
Irony. Life is full of ironies. Or is it just my life?
In short, there is a change in plans again, due to whatever reasons I am not sure. I am only meeting the team on Monday to discuss and sign consent maybe... Consent for the treatment to hopefully bring down the HAMA numbers to negative... The doctors call it 'treatment' but the parents all call it 'CHEMO' because it consists of chemo drug and because it works on the same basis as well - to destroy our own immunity...
Thats all I have to share with everyone for now... The picture will only become slightly clearer after Monday's discussion.
Praying for good health for everyone.
Love,
Cyn mommy
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6 comments:
Dearest Cyn,
We are keeping Char in prayers. Life is fragile and we will handle it with prayers. Daily we surrender this precious and beautiful child to God.
Remember to breathe and look up.
Big Hugs...Aunty J
Hi cyn , life is indeed made up of numerous uncertainties. And maybe that's why we are always reminded to take a day at a time , consider the odds, go in the best intentions and leave the rest to god. Keep the faith . Will be praying.. Hugs. Viv
I understand that Charmine has clear scan result and HAMA positive. So, with the "Chemo", "treatment", what is it suppose to do? To give HAMA negative and kill the cancer? But since the scan is clear, so what cancer is there to kill?? Or it kill the immunity to bring HAMA negative for the continuation of 3F8 treatment? How many 3F8 cycle is consider enough or where is the stopping line that enough is enough? OR how many clear scan cycle is consider enough to reckon that Charmine is clear of cancer?? It seems that when HAMA is positive, and even with a clear scan result, a chemotherapy is required, is this a standard procedure?? How about HAMA positive + scan result neg? Another run of chemotherapy as well? I believed there must be a indicator to know when you need chemo, when you dun need one and how many 3F8 cycle is required or how many clear scan results indicate a total cancer free result...I'm just confuse as after hearing the good news, and now it is a chemo treatment stage. I hope things goes for the better and wish God bless everrything goes well with you and charmine.
Cyn, i just wanna tell you: Keep the faith! God is healing Charmaine and He had shown us His powers and mercy, didn't He? We had overcome so many milestones with His powers, from despair to where you n Char are standing now. With God all things are possible. So keep the faith and focus on God and let Him deal with the rest.
Hi 2am, let me explain bit by bit =)
It is two different things when we say clear scan result and Hama positive.
Clear Scan result -> It means that whatever can be detected by the machine, is detected NO cancer cells. However, all should have the understanding that, it doesnt mean the body has no cancer cells. Some cells might be in transformation to cancerous that cannot be detected, or some are too small to be detected.
Then why not get better machines? The machines in NY are already quite sophisticated and they can detect the best that is possible.
Nonetheless, a clear scan result is obviously good because it means that without chemo, Charmaine's body can keep out the cancer cells.
3F8: What is this treatment and why positive has to go through chemo again?
This treatment is to ensure (or try to ensure that) it does not come back again. Targeting at the GD2 marker cells, 3F8 aims to work at the gene level (i think). When she is Hama positive, again, it is a good and bad thing. Good because her body fights strongly. Bad because it is too strong, it rejects the goodness of the treatment.
Why need to go through chemo? This is to break down the body again, so that the body can accept the treatment once more. This is not to break the cancer cell like previous since there is no more cancer cell.
Is there any other way than chemo? Yes, sometimes doctor will recommend to stay low first, and let the body automatically becomes negative. but it depends on the count level, and we will follow the doctor's recommendation.
How many cycle? IIRC, it is recommended 4 to 6 rounds of treatments.
I hope this provides a clearer picture to you and all =)
Love, Charlene
little princess can survive tru! everybody is waiting for a bubbly her back here! so have faith with urself..with her..with jase..with the doctors there..
and have faith in us..all 3 of you is in our prayer list!
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