I have quite a handful of challenges to sort out soon...
Firstly, the current maid is not adjusting well to the environment at home with us and hence, unfortunately, I am on the lookout again... This really is the worst timing of all... I have 12 more days to go before Char's big surgery and I simply have no time to go down to agencies looking for a new maid. I have been spending hours daily until the wee hours searching online for maid bio-datas and am going bonkas soon! Quite frankly, I am not confident I can get a good one and I seriously do not know how to choose a good one either. I need a reliable one, a hygienic one, a clean one and a healthy one because I cant risk anything with Charmaine. I almost wish I can do without one. Yet, the annoying thing is I cant do without one. :-( So yes, in between hospital and home, I am desperately surfing and calling...
Secondly, I am also trying to coordinate with New York MSKCC to see if we can work out any arrangement for Charmaine's treatment should we not raise enough funds in time. From my layman's understanding, New York has replaced bone marrow transplant with the 3F8 drug (for some kids I assume, because I am not sure if it for all NB kids) because they have apparently achieved better or comparable results.
The standard protocol for NB Stage IV kids is generally chemotherapy, surgery and bone marrow transplant. Charmaine has already completed 4 out of her schedule 5 cycles, and she is scheduled for her 5th cycle after the surgery as soon as she recovers. After the 5th chemotherapy, doctors will harvest her blood for her stem cell transplant (in case we fail to raise enough money to go to NY, Char will have to continue with the stem cell transplant which is a nightmare that I dont even want to think about now). So anyway, ideally, to optimise the chances for Charmaine, she should leave for NY as soon as she completes the harvesting which is most slightly sometime in end July or latest by early August. I dread to think of the 'deadline' and I sincerely hope that Char doesnt miss the 'critical window phase' for her 3F8. Hence, I wrote to New York, pleading with them to please allow me to bring Charmaine over as we continue to raise the funds and maybe allow me to pay them in instalments.
I have been pleading and begging so much in the last 3 months of my life and this has been the most humbling experience ever. Before my divorce, you can probably classify me as prideful lass whom will rarely plead but would rather die a prideful loser. Motherhood changes everything. Its weird how one would rather die than beg for oneself but when it comes to doing anything to save our very own babies, anything... even my life... not to even mention any pride. It has really been not easy. I just feel that I have totally lost my own purpose in life, no principles, no individual goals... unexplainable... like I am no longer living for myself... and my only purpose in life is to prolong Charmaine's life for as long as possible until a cure for neuroblastoma is found. On the one hand, I should not be upset really because at least compared to alot of others out there trying to find a goal in their lives, I have one clear and straightforward goal thrown onto me without needing me to figure out. So yes, I am fortunate in that sense. On the other hand, its tough, tough to lose your own identity and yet be able to remain positive and hopeful in front of the kids so that they dont lose their own dreams and purposes in life.
Thirdly, Charmaine is scheduled for her CT scan on the 9th of June, Tuesday. Charmaine needs sedation because all the huge machines freak and traumatise her tremendously. We always need to get her sedated so that she is not aware of what is happening to her. There was once when she was doing her MIBG scan at SGH and the sweet auntie nurse insisted that since Charmaine is coming 4 and she could do it without... We had such a a hard time comforting Charmaine because she just cried non stop and nearly vomitted from all the crying... Eventually, we managed to calm her down enough to do the scan but we just couldnt get her to keep her head up within inches of the machine from her forehead. Hence, on day 2, sweet auntie nurse said "sedation"... Its not nurse auntie fault... Coming from her perspective, sedation is no good because they worry that the child might stop breathing which I could totally understand. In all honesty, I dont want to sedate her too, given a choice. But, as much as I fear for her vitals, I also hate to see her cry her lungs out and struggle so much. So, yes between the 2 evils, I choose to have her sedated so that she doesnt live in the fear of all the images of these huge machines and only I will have memories of my own daughter being tied and hooked up to all the scary machines, deeply imprinted onto my head.
So I digress. I am having mixed emotions for Tuesday's scan. Its the first time we are going to come face to face with the monster tumor after we started chemo, since the CT scan done on 14th Feb. Dr Aung asked me yesterday, "You will be excited to know the results from me, wont you!". Well, yes and no. I wish that she can tell me, "The monster has miraculously disappeared!". In my own denial state, I just dont want to know anything about it because I hate it. And its mentally tiring to hear anything about it. But as a rational being, in order to win the battle, I have to know my enemy well so I have to face it. A few possible scenarios, no bed and we have to reschedule the scan, or results - book an appointment with Dr Chui and more, more news and information that I dont want to know but have to understand - the risk, what's going happen, how long is the surgery... I am already crying typing this. I hate myself for being such a crybaby sometimes! How the heck will I win the battle with me crying all the time. Argh! (that reminds me, I have to drop Dr Chui an email informing him of the scan), or results - dont know what to expect...
Fourthly, I have a few friends asking me if I approached the foundations. We approached Ronald McDonald, they have apparently closed applications for this year. Well, I am not surprised with the financial crisis. Our social worker from Children Cancer Foundation also said that she can only help if the treatment is in Singapore. This is why I am begging and pleading you to help me. It seems that these foundations only can help if treatment is in Singapore. But how do I tell them that my Charmaine's additional 20%-40% chance of survival is not in Singapore but in New York. :( I wish, more than anyone else for the treatment to be in Singapore! But my doctor is also helpless. She tried to write to them to allow the drug to be brought into Singapore but we failed. 'Clinical trial, not humanized, no drug company willing to manufacture the drug because there is not enough demand for it (although NB is one of the more common childhood cancer, it is still not THE MOST common)'--- some of the info I read up. Oh, apparently, money would be invested on drugs that can also be used to cure other cancers, instead of a targeted cancer... commercial motivations... lots of many many other reasons... all that makes rational sense but nothing that is helpful really. [I also read about the many other scientists and researchers devoting their time and effort to finding a cure for NB, a very big thank you!]
Five, I brought Jase in for a blood test yesterday. I got the scare of my life. When the nurse came out and informed me that his platelets were too low and they needed to do another blood test for him, my tears just came streaming down non stop. I am very vulnerable now. I can break anytime and I cannot take another blow in my life. SO PLEASE, whoever is up there hearing me, PLEASE SPARE ME!!! Anyway, I was discussing with a few mommies with Luekemia kids and somehow, Jase is displaying the same symptoms. Losing weight, complaining of knee pain when I dont see any wounds, fever on and off... They advised me to bring Jase for a check just to be safe. Ever since Char's diagnosis, I always have this tingling feeling. Jase is affected. Some friends say it could be pyschological issues and that Jase is subconsciously falling ill more than often to get the attention that he so desperately need from mommy me and yet I am so ashamed to say that I hardly could provide... Anyway, thank goodness, I waited anxiously for the second test result and it turned out fine. They found a blood clot in the first test which resulted in the low platelets count. Well, I am not resting my guard yet, probably never will. Charmaine's first blood test also yielded nothing too fearful but look what I gotten eventually... Hey mommies reading this, please dont be freaked out by me... I am just an over-the-board paranoid mommy now. Doctor did find a couple of swollen lymp nodes around Jase neck and we are going to have to observe him carefully. It could be just from a simple viral infection to ...................whatever... I dont want to think or know now.
Lastly, to the many people with questions on the fundraising that my friend Josse is coordinating and the questions coming into the blog, please do bear with us. I seek your kind understanding here because as some of you might already know our dear godma jolene is getting married in July and busy with her prep while trying to help as much as possible... Charlene is also busy with her work and lessons... Josse is a mother of one, with kids and work to worry as well... I admit that we are in a bit of a "trying to figure out" and "work in progress" mode, with all of us sorting things out on our end... we try to call, we try to email... but we are not operating like a steering committee who gets to brain storm and sort the challenges out. All of them, including many others working silently in the background, are doing it out of a goodwill for me and for Charmaine. We dont have a structure and we only have 4 of us but we know every cent of the money that comes through our way is hard earned money and I know that I am picking the worst time in pleading to you to help me because of the financial crisis... I know that many of you out there are having a tough time like me too... BUT PLEASE, please believe me that I have no wish to mis-use, cheat or put the funds to inappropriate use... Charmaine's battle with neuroblastoma is a life-long one... For as long as she lives, there is always a chance for relapse and living life in my shoes is not pleasant at all... I have lost my carpe diem...
I just like to end by saying that: "I thank everyone for everything, donations, words of encouragement, and just being around. I am forever grateful. THANK YOU!"
PS: Please take good care. Good Health is priceless.