Getting to a new territory...

~~~A short summary of the past week~~~
We were finally discharged on last Tuesday 16th August after almost 3 weeks of inpatient stay, fighting 4 infections, severe pain and loss of appetite. And we were re-admitted on Thursday 18th August for blood and platelet transfusions, with blood in her urine... After an overnight stay, we were discharged the next day. Char spent the entire weekend at home, with fatigue, zero appetite and severe pain which left her frozen in the same position for days... Any tiny shift in movement will bring about excruciating pain, sending her tears flowing... She tolerates everything quietly otherwise... Making no sound, having no smiles, not talking... To be honest, I've never seen my child more sick then this throughout our entire journey... Not even during our spinal cord compression, not even post op... I cannot even grasp the extent of pain she is experiencing... Her threshold is horribly high... But she's afraid of the pain. Due to the fear, she remains as still as a statue for days...

~~~Our new phase~~~
As I've probably mentioned before, my child is now platelet dependent. Due to the extensive treatment she has received non stop, the toxic in her body has accumulated to such a point her body is now having a lot of difficulty recovering. As such, her body now is struggling daily to make enough platelets; even with platelet transfusion every other day, her platelet count will plummet within a day or 2... A normal person will have platelet count of more than 100k which will help in clotting. In KKH, a child needs transfusion once it falls to 20k. Char's own platelet count has been hovering below 20k without transfusion... With this new condition, we face some very dangerous situations... She may bleed profusely to death... As it already is, we will see blood in her urine the moment we step out of the hospital... The urinal catheter she is on will also increase the risk of bleeding in her bladder when her platelets is low, which is what we are seeing daily. I cannot even tell you HOW MANY children I've come across passed on because of a bleeding bladder... Due to the toxicity of chemo...

Frequent platelet transfusion and severe pain really doesn't go well together... We knew Char would need a transfusion on Monday even without doing a check... The challenge was getting my child who was suffering in severe pain to the hospital... I increased her oral narcotics myself, loaded her with as much as I possibly could... And yet, I still couldn't get her to even move an inch... I couldn't even slide my arm below her knee without her crying out in pain... I so wanted to just sit there and cry...

But I know I can't... I have to figure out a way to get her to KKH by hook or crook... She NEEDS her transfusion! I called Dr Aung, called the palliative team up to inform them the severe pain she is suffering from... And finally, I decided I had to call for an ambulance... A stretcher wouldn't solve our problem because every movement brings on PAIN... But it was the best I could come up with... WHY IS MY FREAKING LIFE SO MUCH LIKE A DAMN DRAMA?!?!

My baby girl did her very best to tolerate with the pain brought on by our shifting and carrying and we finally arrived at KKH... And it was another bout of suffering and pain to get her onto the bed and then it was another bout of shifting to another bed... By then, her heart rate spiraled upwards... No one who witnessed the scene is not heartbroken... Throughout the entire ordeal, I had to keep taking in deep breaths and forcing my tears back... It was so tough... :-(

I have not been crying as much as I should... I don't know how am I doing either... I feel like a robot most days, void of much emotions. I know I should focus on spending time with my baby girl... I am, but all I can do is to lay besides her... She does nothing, probably trying to focus on keeping her pain at bay... The rest of my awake hours, I divert my attention onto the challenges brought on by our new condition...

One of my biggest challenges now is Char's platelet transfusion. On Thursday, I had a complete meltdown right at the nurses station, screaming at a doctor who wasn't at fault. I am so stressed, so desperate and so dependent on others... It frustrates me totally. Before Thursday, during our 3 weeks inpatient stay, Char has needed numerous platelet and blood transfusions and because of the public holidays, apparently the blood bank has been very very low on the blood products... We were told everyday daily that "Sorry mom, the blood bank does not have enough and we can only transfuse her with 2 small random packets of platelets." When we are inpatient, I can tolerate the fact that Char be transfused daily because of a lack. It doesn't put my child in a much more difficult position due to unnecessary human inefficiencies... I can of course understand that situations like a shortage may arise from time to time and I can't fault the system entirely because no one system is foolproof.

However, can you even begin to imagine my pain, my despair and my frustration when I have to bring Char to the hospital just for a transfusion and they once again tell me the same sentence?!?!? And the WORST of all, my girl has a count of 11k on Thursday and after 2 random small packets of transfusions, at best, her platelet would increase by 10k, hitting 21k! My poor child has to endure severe pain to make her way to the hospital, getting off and on the bed, getting on and off a taxi, wait close up to 8 hours minimally to have her transfusion and she's peeing blood... And because of a severe shortage, she is enduring all that for a mere 10k which will still put her at a risk of bleeding which will surely drop below 20k by the end of 20k... Which means we might as well find our a permanent home within the hospital building itself! To further frustrate me, it's unacceptable to me that it's been more then 2 weeks of severe shortage of blood products (maybe not by their own standard protocols but it's what the HSA has been telling KK and what KK has been telling all the parents), there had been no announcement whatsoever to ask for more donations!

I cannot stand it. I feel so desperate, so helpless and so much unjust for my suffering child. Throughout my time spent fighting cancer, I have developed such a fiery survival instinct sometimes I have no control over it myself. My adrenaline just sets off my survival instinct to fight, to resolve and to create a solution. In reality, how much of these issues are real problems?!?!?! Yes, I can only accept that there's no cure for cancer now, but it's only for now, someday, we will cure the mystery of cancer too!!! We will and we must!!! Compared to cancer, everything else, almost, can be resolved!!! It's just a matter of doing it!!!

I lost it when the nurse came up to me with those words and I just storm my way to the doctor! I believe that I have my valid reason, like I explained... It simply won't work and it doesn't even make bloody sense. I stated the facts theoretically, crying, questioning WHY has the issue of the shortage not been resolved. I tolerated for 2 weeks now and I simply can't anymore, seeing how much my child is suffering just to get her much needed transfusion. Somewhere in between the questioning, I appologised to the doctor who was at the mercy of The Blood Bank and I know they also get scolded by those doctors authorizing the release of the blood products to the children... I told her that I know it wasn't her fault BUT since the hospital has been facing such a severe shortage, shouldn't someone within the hospital feedback to the HSA or something?!?! Is everyone simply sitting on their asses waiting for the next person to resolve it or to highlight it?!?!? And I demanded to speak to the doctor from HSA because if no one wants to highlight the severity of the lack, then I WILL. They of course declined. I screamed that I just wanted to HELP. Let me know HOW. I cannot sit around and just wait for the issue to resolve magically. Lack of donation, tell us how and we can spread the word... I know there are people willing to donate but they simply don't know that there's a severe shortage...

I was just a total mess... Sitting on our bed, desperately cracking my brain to come up with a solution. After all the noise and hoo-ha I made, I was later informed that they managed to get Char a packet of CSP (one donor large bag platelet which works the best for our kids). What do I say to such a situation?!?! I'm totally drained... Highly strung and emotionally down... I sat on our bed, wondering to myself if I indeed need to act like a crazy bitchy irrational mom every single time we need a transfusion?!?!?! I can't. Its horrible, I suspect I might die of fatigue myself first.

But HOW and WHAT do I do? I'm totally dependent on others in this case. If I could give my own blood to her myself, I would do it myself. I'm insanely independent when it comes to taking care of Char. Not sure if it's a good thing because my secondary school teacher once told me that my weakness is my inability to delegate duties. I can and I will change our own bedsheets, I can do a marvelous job tying the knots the way the housekeeper does, I can carry Char on a stroller, with her all hooked up to numerous pumps, push the stroller with one hand, the drip stand with another, the urinal bag and move everything to the toilet, carry her myself within the same cubicle to shower her and finish up everything on my own. Do you know that I can even push a stretcher bed much better than the nurses? I can control the entire stretcher with my bags and stuff and any help is more of a hindrance. I can even deaccess Char's needle myself. I am way more prepared in terms of supplies. Our neurosurgeon will tell you that this mommy has everything. Each time he asked the nurse for something, the nurse will have to run all the way out to search... All I had to do was to stretch a little, reach for my bag, and it's in there...

I'm not a smart person... I just have an inability to trust everything onto others because experiences have taught me that by waiting for others, your help might never come because unfortunately, to you, a life may be concerned, to others, we are just another workload. It really isn't the point about who's right and who's not or, what's wrong and what's not... To me, it's all about ONE THING and just one thing - TO GET IT DONE. It don't matter to me who does it. If I can do it, I will. We have an internal joke between Char and me, always discussing about what career I should embark on next, the housekeeper auntie, the porter auntie, the ambulance porter, the nurse or the doctor?

I'm not tired doing those things, it keeps me sane, provides a distraction, and it allows me to have some sort of a control amidst all these insanity. Most importantly, it gives me great comfort to know that should small situations arise, I can handle it myself even if I have no help around me...

Of late, shifting my attention to fixing all these little hiccups within the system that we are totally reliant on has sort of provided a sense of living. I am engrossed with fixing all these bugs, no matter how minute... Because in between my insane world and my child's immense suffering, these are the ONLY thing I can do for her... Quite literally the only thing...

Hmm, another onco mom tried to comfort me, telling me to relax and be more forgiving towards the minute situations around me. Instead, I should enjoy the time with Char. She's right. However, I cannot and I simply won't take "No" or "Don't know" for an answer. And I cannot sit around just relying on people who doesn't care about my child or people who care but is also sitting around for others to fix the issues. Almost all the times, all it takes is for someone to question and make enough noise and you will realize that all these issues will resolve 'miraculously'. I really wish I could have been a more pleasant mom, a mom that doctors and nurses like. I really dislike being the annoying mom, questioning, probing all things and ruining others days... I, more then anyone wish to accumulate some good karma for my family... But, I really can't sit around and knowingly look at all these inefficiencies, all these supposed issues and pray and wait for others to help me solve them. I can't. My every bone is made to fight and push through the bushes or thorns because every minute that I spend waiting for things to happen equates to me waiting for my child to fade off...

~~~HELP CHAR, HELP ALL THE KIDS~~~
This brings me to our new situation now. I am begging, pleading and asking for your help once again. I don't even know if these's any of you reading our blog these days... BUT I desperately NEED YOUR HELP, not only for Char but also for the many people needing the platelets to reduce their risk of bleeding.

An article in the Straits Times may just be words to you, another announcement. However, I assure you it's more then that. Just not too long ago, I also could never understand the dire desperation of needing platelets or blood transfusion and being told there's not enough... Because even though Char needed them in the past, we probably needed once or twice in a month and after that, her body could produce enough on their own... And back then, Char could commute easily to the hospital and all that dampened our moods was an 8 hours stay just for a 15 minutes transfusion. I'm ashamed really because I didn't understand the desperation of a mom in such a situation as we were not in such situation ourselves.

Today, I am writing to you, quite literally at wits end. On top of fearing for my child's suffering, on top of being scared for her situation, I am SO WORRIED. I don't know when I will hear the doctors telling me they have not enough platelets. I am so afraid that I will have to hear it every other few days and I cannot do anything about it. BUT if it's truly like I have no cure for my child's cancer, then I can only sit and cry. But its not the case, there are people who can help my suffering child. Please, if you keep the donation coming in, if Char has enough to receive CSP, she will at least be able to stay at home up to 3-4 days before needing to come down to KK for transfusion again. Since Monday, taxi will no longer be our mode of transport. She will have to travel in an ambulance from today, and if she doesn't get enough, she will have to make up to 3-4 trips per week... Just thinking of her pain is already tearing my heart apart...

Even if you donate, my problem doesn't end there. But at least, it's the fastest way you can help my poor child now. And it's the only interim solution I can figure out.

The National Blood Bank which supplies KKH with their blood products doesn't allow direct donation. So you can't walk into HSA and request your donation to be directed towards Char. So, my poor child is still at the mercy of the authorizing doctor back at HSA, whom may not even have heard of her name, and doesn't know how bad a situation she is in. To them, Char is a set of 7 digits starting with the number T and ending with another alphabet. They will not know the amount of pain she has to endure to make the trip down in an ambulance just to get her transfusion. To them, she's another form that they have to sign. And to them, she has to fulfill the 'stupid book' of protocols to receive her platelets.

I am not demanding that Char has to be prioritized. Everyone has the same urgent need as Char. But I am beyond scared to hear another shortage and when that arises, even if I have friends on standby to donate, I can't even be assured it will get Char.

That is another whole different scenario for us. I called up HSA and got a freaking answering machine to talk to me. Finally, a friend got a number of Blood Bank and I called them up. It turned out to be Singapore Red Cross who is partnering with HSA and blood bank to run the donation drive. Spoked to a gentlemen who couldn't answer my questions and passed my call to another lady Miss Angeline. A very very nice lady who took the time to answer my queries. And I am not even done with learning. There's too much to digest. I had to learn about the lifespan of the various blood products and how the different blood donation drives are done for the different products. I found out that to donate PLATELETS, the donor has a more stringent criteria to meet, as compared to whole blood. A whole blood donation may range from 8-15 minutes whereas platelets donation takes up to 45-60minutes. And to make a platelet donation, it can only be done at the head quarters at HSA (which is SGH). To make a platelet donation, you have to specify because it a different procedure, there's a machine which will separate the platelets out from your blood and then the blood is infused back into your body. A platelet donor can donate up to 12 times a year and a whole blood donor can only donate up to 4 times a year.

And I found out that the severe shortage over the past week is apparently caused by 3 things. The Chinese Ghost Month, the public holidays and the fasting month.

I thought that HSA or Blood Bank should have anticipated these occasions earlier and should have done more work on reducing the shortage to a minimum but I expected too much of them... And since they couldn't solve the shortage issue which could have been pre-empt, they should have allowed direct donation to be made. If they could solve the shortage issue differently, then of course it's a different matter.

To actually make the situation even more infuriating for me, I actually found out that direct blood donation can be made in NUH. I had thought that direct donation is not allowed by HSA entirely within Singapore. Alas, to my dismay, it was not to be. So if char had been a patient at NUH which runs their own blood bank, even during a shortage, our friends could be activated to make the donation for Char...

It makes me wonder WHY then is direct donation not allowed when it's run by Blood Bank. I have yet to contact anyone within HSA or Blood Bank who can explain to me their 'RULES'... But I sure hope the reason is not due to shortage of manpower or incapability to handle the situations if direct donation is allowed. Obviously, to a psychotic desperate mom here, those are simply unacceptable reasons. I am up against a giant in this case. I can't bring Char to NUH for transfusion because they didn't even allow Char to do a PET scan simply because my girl is not a patient of theirs!

Seriously, if you folks are so interested in playing politics, join the PAP for god sake. Leave the patients out of your political games here. But I digress. You will be amazed at the politics played in the medical world. Singapore is becoming more and more of a stranger to me these days. Did someone mention equality for all people? Yes, it's equality when you never fall sick, never get richer or poorer, be in your life in a constant class, then you won't get to see what is happening outside your 'class'.

My child is a born Singaporean. And because of her being a patient of KKH, she's not allowed to do a scan at NUH. So what did I do? I had to bring her to Mount E. And if not for your donation, how would have I been able to afford to bring her to Mount E for a PET scan? I cringe thinking about others not blessed as us. And now platelet transfusion, because we aren't a patient of NUH, we won't be able to bring her to NUH either... Yes, Char was not turned down when she required transfusions. That's what Miss Angeline assured me which I agreed. BUT if I had NOT made a cuckoos of myself at the nurses station, then she would have to receive the 2 random packets and we will have to be transfused the next day... Or until they have enough... And all these would render us a longer inpatient stay which will make char upset. She realty wishes to be home.

I'm not making sense but to me, it didn't make much sense that simply being at a different location, there's a vast difference between direct donation being allowed or not. I'm continually amazed at the differences within this little red dot. Don't even assume that all the hospitals will have the most up to date treatments because they don't. No matter how small, there are differences. There are a lot of small minute things which will slowly but surely add up, to create a significant difference.

Like the situation for us now, I really hope Char can receive CSP platelets each time we require a transfusion... Because it will bring her platelet count up above 100k and only then will we get a good 3 days at home. But I can't... Even if I volunteer to compile a list of friends or volunteers and do all the necessary contacting, HSA will still not allow it. Maybe I stand a little bit of chance if I write in to HSA... But I'm so drained and tired... Nonetheless, I am not saying I ain't trying... That's why I contacted the Singapore Red Cross to start understanding how things work... I'm still a long way away from seeing the full picture... And for now, I can only just pray that the Blood Bank will always have more then enough supply for everyone needing the blood or platelets...

There will be countless more moms like me out there worrying about the same thing as I am right now, fearing the same anxiety as I feel...

PLEASE GO MAKE A DONATION. You are saving lives almost instantaneously.
They have a shortage of PLATELET donors... Please specify that you wish to make a platelet donation.

From the bottom of my hearts, I thank you all. On behalf of the many other kids, other adults, please know that we will be forever grateful.

PS: to the couple of kind souls who emailed us regarding the donation of tickets, I am so sorry I can't focus and will try to get back to you as soon as things are a little settled for my girl.


Love,
Cyn mommy