Got a big kiss from Max, one with a big sound

Part 1 ...

The good news is, his blood test is negative, no bacteria, the bad news is, the stool test is positive, got fungus, now must wait for the result of the full body scan that he got today, maybe later Tuk will inform me about that and also if he is going to get chemo tomorrow or not, if not then...Watch Me!!! I will run there tomorrow, can't stand to wait any longer I want my hug, Today,I mean just now, I've got a big kiss with a big sound from Max over the phone, haish...so sweet, and as always he was searching for his monkey when he knew it was me on the other end of the line, I was so touched!! OK, will wait for Tuk's news, later continue...

part 2...

still waiting for Tuk's call or sms, I think she fell asleep LOL, is no news good news, hope so.

cough cough

Hm...how do I say this nicely,I hate Asha haha, what only, go to KK and hug my darling Max, I'm so jealous of Asha LOL, hey not fair, no just kidding, she's very nice and lovable, she cooked some food for Max because Max don't want to eat the hospital food, she also washed the clothes for them, she's Max aunt, Matthew's sister.

Must eat more my little darling

OK, here we go, now his diarrhea got better but fever still up, he doesn't want to eat the hospital food but it's also not good for him to eat food from outside, scared bacteria on food will enter his body, this Monday he will receive a full body scan with this machine that looks like a giant washing machine or a dryer perhaps,

http://www.bodyscan.md/fullbody_scan.html ,

A body scan is used to detect diseases, tumors and abnormalities throughout the torso it can reveal hidden medical problems, hopefully they find what they are looking for and can solve the problem, pray for my darling.

Finely talked to Tuk

Max still having high fever, WHY???, even under medication still not getting better, it's frustrating, 13 day's haven't meet him, I'm like fighting every day with my self if I should just go to KK or not, end up I didn't go, I can hear his voice on the phone, he start to talk more and more and I feel I'm going to miss a lot of his new actions, hope he gets chemo therapy soon and hope he gets better, Liza was happy to hear his cute voice too, every time when I talk to Max on the phone he searches for his monkey, the one that I bought for him, he can remember everything, my little sweetheart, I think tomorrow I disguise myself as a doctor, then I can just sneak in to Max room and steel a kiss and a hug from him.

Hope they are fine

Wanted to visit Max but decided not to after knowing he had fever, so I didn't go hmm,tried to call Tuk but never managed to get to her, line busy, nobody pick up, hope they are fine.

Thank you

Last week the nurses took some stool and blood samples from Max to check if there are any sings from fungus or bacteria, today Tuk found out, the nurses forgot to send the samples to the test labor, Tuk was so very mad about it, staying with Max since Sunday in isolation room is really hard, waiting for the results and hoping to start chemo, she waited for nothing, today they took samples of stool and blood again, now she have to wait for the results the second time, sure a few days before the results come out, this afternoon Matthew had to send Tuk to the doctor, she suddenly felt very dizzy, guess the whole stress and not enough rest, she barely eats too, since 5 month she stays with Max at the hospital and she is not sleeping on a proper bed, that's very tiring, nobody can imagine that, Max had to get some stitches on his chest today, the line cable had loosen up, they gave Max something to sleep but he didn't sleep, it was more like he was drugged, after the stitches were done he said"thank you"in a very cute way, Tuk and the hospital stuff had to laugh, Max is still having high fever til now and he want to walk out of his room so badly.

The new jealous little Max

Wohoho,now little Max got an attitude, don't let mom talk on the phone, he screams like mad, ha ha, when mom hold her phone, SO jealous hah, don't want to share your mom hah, that's not good because it's like impossible for me to communicate with them and I don't know what's going on there, hey mom(Tuk) is feeling a bit better now, she said so but sounds still very sick to me, her voice so sneeze, poor thing, yesterday Matthew managed to send a packet to Thailand, with some baby milk and clothes for Mishal, Tuk misses Mishal a lot she said, of cause!!

Miss him like crazy

It's been 9 days since I last saw Max, first came my flu and now he's in isolation, plan to go KK tomorrow but not sure yet, I will only be able to see him through a glass window in the door, after he cry because he cannot come out of his room , I can't go in, what's the use but I miss him, don't want him to forget me, lol, double door some more ;(

I just got a message from Tuk, she is having fever and flu, that's bad, she have to wear mask and is not feeling good, she say her body shaking, poor thing, Max still haven't start chemo, doctors say, maybe tomorrow, must wait blood result first, hopefully Max don't get the flu from his mom.

Max is in isolation room

Since this morning, Max changed to the isolation room, if everything is OK than tomorrow start chemo, now he cant bring any toys in the isolation room, must be all very sterile, that's gonna look very plain and boring, no one can enter that room accept one nurse at a time and his mom, not sure if his dad can go in, Manchester won 3-0 against Liverpool HA HA it's just too cool.

Tomorrow isolation room for Max and mom(Tuk)

Ok,I told Tuk to kiss and hug Max from me and Nadya, Tuk just told me that Max took out all the bottoms from her hand phone, haha, boy oh boy, now her phone always shut down on it's own, Max goes to isolation room tomorrow, a day earlier then planned,he got"diarrhea" http://digestive.niddk.nih.gov/ddiseases/pubs/diarrhea/
due to his medication,
think they just want to make sure he is bacteria free then give him"chemo"
http://www.chemocare.com/whatis/what_is_chemotherapy.asp .



PS.Find spelling errors, so what..., finders keepers, lol

Miss those happy times

Talked to Tuk on phone only, she says max got fever and they got to make a blood test again because he might have gotten bacteria again, who knows from where, no visitors, is this ever going to stop, poor Max, how much medicine he have to take in his young age, worried that even if he got better from his illness, is there any damage done to his health from all the medication, it scares me just to think about, Tuk is really up sad because no one comes to visit, she feels lonely and bored, everyone had flu, fever,trout pain or other reasons not to come, doctors also don't want many visitors, I'm feeling better today but I still don't think I should rush to meet Max, I want to wait till he got his chemo done, just to make sure that I don't carry any bacteria on me to him, sorry for Tuk but what to do, pray for him to be better soon, I want him to go to the beach, he loves it there, back to the older times, it was fun and Max were happier, I miss those times.

Mishal is fine

Edited by Leila

Still haven't been too KK to visit Max, it feels like never ending, miss him a lot,Mishal is fine in Thailand, I've spoken to Tuk on the phone yesterday, she told me that she calls her sister in Thailand every day, some times even twice just to find out everything about her sweetheart, it's not easy, Tuk says she misses her like crazy, anyway she's busy with Max, hope I can visit Max soon and that he don't need to go for Bone Marrow transplant.

Newest favourite word from Max "Ah"

Edited by Leila

Everything he answer with yes will be a "Ah", it's his newest favourite word, so far so good, his blood test came out as negative which means no bacteria in his blood and on his line, GREAT, I'm very happy for him, the doctors want to put him on isolation starting this coming Monday, Tuk don't want to wait this long she find it a waste of time and she worries that the bacteria may come back, I can not go to visit him because of flu, Vanessa,Liza,Asha...all are down with flu and fever, Nadya had just recovered from her flu, oh dear, what to do, miss Max, want to see him, hm mm,sum more not easy to contact Tuk, room phone not working properly and hp spoiled err...!

Remember me this time

Edited by Vanessa

Max was OK when I called Tuk yesterday but he came under the attack of his mom, haha, think she got bored and shaved his head again, whats wrong with mom LOL, his hair was just growing back nicely.

Hope Max is fine

Edited by Leila

Tried many times to call Tuk but room phone always busy and she didn't top up her prepaid,Matthew said later he top up for her, so hope Max is fine, I'm having a flu headache and backpain, the backpain still from my stupidity, never warmed up before I streched, now have to suffer for nothing, don't know whom to blame for my flu, haha, I go sleep now, see how tomorrow.

Tuk is back,mom is back,wife is back,friend is back

And there he was today again, the happy little Max that we all know, like crazy haha, he was dancing, talking non stop, but don't ask me what he said, no idea haha, but it was fun to listen, I am glad that Tuk is back safe, oh yes, thanks for the gifts, we visited him today Nasir, Liza and me(Leila), but in the evening his fever was up again.

Day

Night

Tuks return is postponed again

Edited by Leila

Her return to Singapore is postponed to tomorrow morning, what happened, Matthew booked her ticket for today but the Agent typed a wrong date, instead of today they typed yesterday and nobody felt the mistake, luckily she got a new flight tomorrow morning but she stuck ed at the Bangkok airport for at least 13 hours, oh dear!! That was another stress day for mom and dad,yesterday Matthew wished to get some sleep but at the end it was just a to little time to rest,tonight there will be no difference, I think they need the next whole week off, haha but how?? Matthew said max was fine, ant Asha visited him today and brought some food for Matthew and Tuk, don't know if Matthew was able to eat.

Got the ticket ready

Edited by Leila

Tuk (Max's mom)called me from Thailand this morning, said she comes back to Singapore by tomorrow, yeah happy, missed her a lot, Matthew said Max is fine, I'm stucked at home, rain rain rain and not feeling to good, back pain, headache, and no mood for anything, start tomorrow Max have to go to isolation room, to control him from getting any infections, as we know, he is very vulnerable to infections, well someone is gonna be happy tomorrow to get his mami back, guess who.........M A X !!Matthew was really tired today because he had to run all over just to get the ticket for Tuk,wasn't that easy, he wanted me to book the ticket online but couldn't do that because the time was to late and the MasterCard he wanted to use was with Tuk haha, so we didn't know the expire date LOL, so he had to run from here to there just to get everything fixed, his last wish, he told me, was..."Hope Max is sleeping when I reach the hospital so that at least I can take my shower first, I'm so soaked from the rain and muddy from the sweat and I'm so damn (ops sorry) tired." Hope he got all his wishes and a good rest too.

Mamamia WTH

That might sound a bit hilarious but mom(Tuk) stuck in Thailand, going there with only a 1 way ticket because on low budget, now wanting to book the way back to Singapore but the prize of the ticket is as twice as it was 2 days ago, school holidays hmmmmm ... , so she can't make it back by tomorrow and have to stay longer in Thailand, don't know for how long.

Liza's turn to babysit

Today was Liza's turn to babysit Max, he was in a better mood then yesterday, good for her and good for him, morning he had breakfast with the nurses, after Liza came and took over, had a nice time with him but as soon as Nasir arrived, Max had only eyes for Nasir, Liza was like WTH, haha, in the evening, aunt Asha came too, Matthew sent them home with lori.I'm not sure who babysits Max tomorrow.

I was the babysitter of a very sad Max today

Mom Tuk,called from Thailand, wanted to come to Singapore as fast as possible because she worries for Max, dad Matthew say, no need to rush, enjoy a bit, you suffer enough, Max is fine, stay until Thursday, don't worry...How sweet of him right!Oh my God,my day as babysitter was so boring, Max was sleeping most of the time, when he woke up he had bad mood, poor thing misses his mom and wanted to walk outside but the doctor say cannot, I stayed 10 hours but it felt like much longer, now I can understand Tuk more better, oh my, how long she stays there in hospital already, that feeling can not be described, it is horrible to stay as a non sick person in hospital when you can not leave the room, even if it's only for a day, now I'm home and I feel free again hehe.
Oh yeah...remember when I've told you that I've contacted someone from "The New Paper"and they contacted me and said

"I will be out of the office starting 04/02/2008 and will not return until 03/03/2008.I will respond to your message when I return.Should you need to reach someone urgently, please contact The New Paper news desk at 6319 5546/ 5548. Alternatively, you can send an email to 'tnp@sph.com.sg'.Cheers!"

Well, I'm still waiting for their reply, sent them twice an email. but no respond, don't know if they are going to help or not.Hmmmm

MOM stay a bit longer

Today mom"Tuk" just arrived at her hometown,it's far from Bangkok so I guess she stayed one night in Bangkok(hey that's a title of a song) first before continued to travel, she just informed her husband that she might be staying longer in Thailand as expected, maybe she will be back by Thursday night, I've just checked out out the fare, it will be about S$117 on that day, that's cheaper than on other day's, think Max will just go on with his chemo tomorrow, I will go to KK tomorrow morning.

See you soon sweet Mishal and a safe journey

OK, mom is off to Thailand, to leave her lil sweetheart with her sister, heavy hearted, that was not an easy decision for her and for all those people who think that she gave her daughter away because she don't love her, well they all got small brains and think evil of everyone and everything, anyway she's gonna bring her back to Singapore as soon as possible, dad is taking her over at the hospital for the moment, he have to rush from hospital to work and back again for at least 3 times a day, Max was doing fine until the nurse came to clean his new line, he started kicking in panic, especially with his mom not around, understandable with all this pain he go through, on Monday I will babysit him til his mom arrives from Bangkok, Liza visited Max today and babysit ted him for a few hours because dad had to work, Max was sleeping most of the time,Liza got bored...haha, Peter,Madeline,Kung's mom,Diann came in the morning and Nasir came about 5pm, after work, for a visit, so again plenty of visitors and lot's of happy time for Max.

Fun Fun Fun

Max is back to "Happy little boy", so nice to see him laughing all the way, lot's of visitors today again OPS...shhhhhh, don't tell anyone LOL, aunt Asha bought a watch for Max,

Khai,Lyn,Van and Peter who bought pampers for Max and Adam, who is not in the picture,

gave Max a small stuffed Lion, cute cute and me, I brought myself and some snacks.

After the OP, still smiling, my lil Hero

Yesterday he had his Operation and bone marrow test, look at the video and see for yourself, what a suffer, OUCH, poor thing.

Line and Bone marrow test, 2 in 1, poor Max

Yes, today he had both, operation to lay the line and also Bone Marrow check, when I called his mom, he was just about to wake up and I heard a little rusty voice in the background, mom want to ask the doc to start chemo by tomorrow, she say don't want to waste time anymore, guess he was sleeping most of the time today and he was surely in a bad mood, after all the pain he had to go trough, we all have sore throat, couldn't go visit him, hmmmmmm sob, I think I will wait til Friday before I go to the hospital, miss him already.

Spelled something wrong.......:P "WHATEVER" ha ha ha, written with feelings not with dictionary LOL

Prity much the same,not good not bad,just so so

Edited by Leila

Tomorrow Max go for operation,the doctor want to lay a line ...
http://en.wikipedia.org/wiki/Hickman_line ... under his skin from his neck to the chest area, sounds scary but it's needed for the chemo, they have many types of lines like Triple-Lumen line ... http://en.wikipedia.org/wiki/Image:Triple-Lumen.jpg ... last time he had a port in his chest but got infected and his condition worsened instead of getting better, a line it's more easy for Max,no need to get poked to much, and easier for the nurse to give medications, as long as there is no infection at the port it's fine, good luck for tomorrow little Max.

Lisa Kneale sent you a message on Facebook...‏

Hi Arlette,
(that's my name also known as Leila) =P
Sorry I have not been in touch, it was chemo and steroid week last week for Jay and they've found a lump on his head. He is fine though smiling through, as always. How is Max? Hope he feeling o.k? I contacted the Histiocytosis Research Trust (UK) and The Histiocytosis of America to discuss possible funding. The association in America said there should be some money from a children's charitable trust at the hospital in Singapore that will be available for his parents, but if they still need some support the trust need to speak to his oncologist to find out the extent of his disease, or an e mail of confirmation, what needs doing (bone marrow etc..) Is it o.k for some one to contact Max's doctor? I think they just need to know specifically how they can help-it would be great if I could talk to them too so I can establish what he needs so I can try to help. Hope this is not too much trouble and truly hope he is doing well.
Take care Lisa x
To reply to this message, follow the link below:
http://www.facebook.com/n/?inbox/readmessage.php&t=21926041784

picture edited by Vanessa

photo snatched from Nadya

Fun with Lionel, Peter, Lyn and Vanessa, Max was just being poked with needles, this time in his foot again, so, no walking, poor thing, he was just starting to enjoy his corridor walks and mom need to carry him again, but this 4 teens managed to cheer him up again and brought a big smile on his face, just as they left the hospital, max got some more visitors,Saiful and Nadya came, so it turned out to be a real fun day for Max, Saiful joked around with him while Nadya became a full time photographer, ahaha, you all brought joy to little Max,thanks a lot for all your time, your parent's should be proud of you :)