Everything is slow to grow

Long time never updated on Max, don't know what to write because long time I never see Max, I still call every day or Tuk calls me but there is nothing much to tell, everything is going very slow and it need a lot of time to watch and see if the LCH stays out, he has fever now and than, not as high as before, it's always around evening time, Tuk got some infection in her eye, she said it's very itchy, that's just what needed, don't you think, what a bad time, all the time staying in hospital makes her sick too, today Max ask her to say bye bye to the phone because he don't want her to talk, getting naughty over there at KK, spoiled by the nurses, specially by the one from Bollywood lol,

Yes!! or No!! to bone marrow transplant

Vanessa and Yazier went to see Max at KK today, first Tuk and Max were sleeping when Vanessa and Yazier arrived there, it was more one of Max's bad days today, he wasn't in the mood, who knows what he had to go trough, I heared his fever is getting higher again, we all can't imagine and can't expect him always to be the happy Max even when he's in pain, Vanessa and Yazier tried to cheer him up from where they stand, outside the door, not easy from that distance, though he was a bit amused by Yazier's cowboy hat, HaHa, well it worked for me too, very COOL!! poor Max, have to stay locked up for so long, while there are cowboys peeping into his room, lol, couldn't help myself, joking joking, he looks good with his cowboy hat, must be terrible for a 2 year old, who loves to run after the robots, those who deliver the food and the documents at KK, now being tied up to this small space, and seeing everyone else walking around, his only joy nowadays is collecting coins from the nurses for his saving box, but how long does this kind of fun last.




Should THEY GO TROUGH BONE MARROW TRANSPLANT? The doctors are urging Tuk to let Max have a bone marrow transplant, even Max seams better now, there is still the risk that the LCH might come back, Tuk is scared to death, not knowing what the bone marrow transplant will do to Max, while transplantation is a life-saving therapy, not all recipients survive, sometimes a patients body cannot withstand the pre-transplant chemotherapy and radiation, sometimes health complications occur after the transplant but for many recipients, a transplant is successful and their best or only option and a hope for a second chance of life, it's only left option, other than that the doctors can't do anymore, the problem is that nowadays people don't have time to explain with patience, Tuk understands English but have problems when it comes to medical language, who dosn't, we are not doctors.

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Living the moment!: To do or not to do

WHAT IS BONE MARROW?
Bone marrow is a spongy tissue found inside bones. The bone marrow in the breast bone, skull, hips, ribs and spine contains stem cells that produce the body's blood cells. These blood cells include white blood cells (leukocytes), which fight infection; red blood cells (erythrocytes), which carry oxygen to and remove waste products from organs and tissues; and platelets, which enable the blood to dot.

WHY TRANSPLANT?
in patients with leukemia, aplastic anemia, and some immune deficiency diseases, the stem cells in the bone marrow malfunction, producing an excessive number of defective or immature blood cells (in the case of leukemia) or low blood cell counts (in the case of aplastic anemia). The immature or defective blood cells interfere with the production of normal blood cells, accumulate in the bloodstream and may invade other tissues.

WHAT A PATIENT FEELS DURING THE TRANSPLANT
a bone marrow transplant is a physically, emotionally, and psychologically taxing procedure for both the patient and family, the bone marrow transplant is a debilitating experience, imagine the symptoms of a severe case of the flu - nausea, vomiting, fever, diarrhea, extreme weakness, now imagine what it's like to cope with the symptoms not just for several days, but for several weeks, complications can develop after a bone marrow transplant such as infection, bleeding, graft-versus-host disease, or liver disease, which can create additional discomfort, the pain, however is usually controllable by medication, in addition, mouth sores can develop that make eating and swallowing uncomfortable, temporary mental confusion sometimes occurs and can be quite frightening for the patient who may not realize it's only temporary.

PREPARING FOR THE TRANSPLANT
a successful transplant requires the patient be healthy enough to undergo the rigors of the transplant procedure, age, general physical condition, the patients diagnosis and the stage of the disease are all considered by the physician when determining whether a person should undergo a transplant, prior to a bone marrow transplant, a battery of tests is carried out to ensure the patient is physically capable of undergoing a transplant, tests of the patients heart, lung, kidney and other vital organ functions are also used to develop a patient "baseline"

against which post-transplant tests can be compared to determine if any body functions have been impaired, the pre-transplant tests are usually done on an outpatient basis, a successful bone marrow transplant requires an expert medical team - doctors, nurses, and other support staff - who are experienced in bone marrow transplants, can promptly recognize problems and emerging side effects, and know how to react swiftly and properly if problems do arise, a good bone marrow transplant program will also recognize the importance of providing patients and their families with emotional and psychological support before, during and after the transplant, and will make personal and other support systems readily available to families for this purpose.

Fresh look

Oh my God, Max was like new born today, so fresh, he was bubbling, dancing, hugging, kissing and laughing all the way, his tummy slimmed down a lot and he was eating the nuts that I brought, he was so cute, Liza and Nasir went to visit him too, it was just so great, I've got a lot of hugs and kisses from him, everyone was dancing on ward 76 haha, I mean everyone who passed by Max's room and saw him dancing, his toes, his tummy,his head and arm, everything was moving on him.


looks like he was on a diet ...

there is the tongue again ...

There can be Miracles when you believe !!

It looks like Max won his battle against LCH, can't believe it still, is it real, my neck hair standing up for joy, his bone marrow test showed no sign of LCH any longer, some of you asked me if that means that Max will live a normal life from now on, well I guess that is still a little bit early to say, we have to take step by step, let us all be happy for the first good news, he still gets blood transfusion nearly every day, the strong chemotherapy kills fast-growing cells, but can affect normal, healthy cells too, the time it takes to get over some side effects varies from person to person, since two days Max had no more fever, that is a good start, let's hope Max stays strong so that he can recover faster, well he is a superhero, if he can fight LCH than there should be no problem for him now!! I'm so happy, I cry for joy, what a good feeling, I almost fell from my chair while hearing the good news and wanted to shout"let's party"lol, we still have to wait for a while, let's enjoy the moment. what a miracle.After the good news came the shock again, the bone marrow test was only saying that there is no more LCH in his bones, not knowing if the disease is still somewhere else in his body, like for example skin or organ, Tuk did not ask the doctor about that, errrrr, but never mind, it's still good news that there is no more LCH in his bones.

Feeling a bit guilty

Wow,I wasn't at KK for quite a while now,think it was last Friday, hmmm so bad but I was busy with cleaning the things that I had not cleaned for some time now, after my job I admit I was lazy, lazy for the long way, busy too with blogging, got now my own page under the name Arlette which is my German name lol, you can pass by if you feel bored, anyway Tuk called me every day, she is still waiting for the bone marrow test result, she think she will get it by Wednesday, hope everything is best for Max, it just have to have a happy ending, for his sake, Tuk said Max had still fever and they still don't know why, now it's raining like crazy and I'm glad I did not go out of my house. Love you Max, I come as soon as possible to visit you. Muaks...Love ya!!

Peeky peeky

Yesterday Nadya visited Max at KK with her boyfriend Saiful, unluckily for them, they were not able to enter Max room, guess his immune system was still down, they had a peek from outside and peeked on Mika too, there was a lot of peeking going on, hm mm, lol, Matthew and Tuk were just leaving the hospital at the moment of Nadya and her bf 's arrival, Matthew and tuk were on the way to buy some food at Little India and I think they went to church, Nadya wasn't able to talk much with then, she told me that Max seamed OK accept that he looked a bit sad, guess that might because his parents left him withe a nurse, ha ha, he don't like his mother to go anywhere else accept beside him all the time.
I tried to call them but it was useless because their phones doesn't work, anyway thanks to Nadya I know that Max was OK and that's all that matters.

Bloody scary

Yes, Max was so into his own crying that he bit his own mouth, I guess he didn't realise it either, Tuk didn't realise it at first, she panicked after seeing the blood running out of his mouth, scared that the blood was from his organs, the doctors checked and told her the good news...phew!! His fever went don a lot, from 40 over to 38, that's good, keep it up darling, fight the bad one, today I will go and visit him, haven't seen him for 2 long days, I know Nadya, you haven't seen him for much longer but anyway that's in your hands, you can go and see him, tomorrow is your Birthday, maybe they let you in who knows :)
HAVE A SPLENDID BIRTHDAY!! STAY CUTE AND BUBBLY!!

managed to meet Max today, first the nurses told me that I will not be able to enter the second door to Max's room, his immune system was very low, well I was OK with it Max's health comes first but Max wanted me to come in, so he screamed until they let me in ha ha MAX!! He had a bone marrow test again and organ screening too, let's wait for the results.

At last some GOOD news ???

I'm not sure if that is for real or not, Tuk called me today and said that Max's blood test came out negative, that will be positive because no bacteria in his blood, 2 day's ago he had still 4 different types of very strong bacteria, WOW!!! Can't believe it but wish it's true, he still had fever and this morning he vomited but at least he drank some milk and Tuk said he looked much fresher today, he still get blood transfusions and his antibiotics is actually for adults, he really is a strong boy, my Super boy!!! I didn't meet Max today, wanted to but was kind of busy at home but I heard his voice on the phone hehe so cute.

Maxie's long stalkings

He wasn't in a good mood yesterday, had fever as usual, hey but I got my hug and a few kisses from him, that's something to be happy about, sorry guy's, I know you all miss him too.

Lets just believe everything's gonna be all right

Met with Max again, to me he looked better today than the day before but the test shows differently, everything is low, I'm not sure what to think anymore, only that I feel good about the care and love he gets at KK hospital, which built on a foundation of hope for him, me having access to his isolation room is more than I can ask for, thank you so much, he talks and smiles when he got visitors, he is clearly a happier person with friend around him, everything possible is done for him, what more can we ask for, he must be strong to win this battle, there is always a chance of survival, never give up hope, always remain positive.

Little hero's who fights their own battle, little Angels of the ward 76 at KK hospital and there are many more, bless them all ...

So very glad and yet so terribly sad

Today I went to KK to meet my darling Max, I was so very happy when they let me in to his room but then the shock, seeing him like this, it was hard for me to control my tears, he looked so weak and so very sad, I tried to make him laugh but failed, hearing what the doctor had to say made my fear of loosing him overwhelming, I am so very horrified what life would be without him, how could we go on? What must his parents go through, Tuk was so sad and she really looked tired, I can't imagine what they think, I would go crazy but what can we do, we can only hope for a miracle to happen, I put my faith in God and pray for Max not to be in pain, I want him to be strong and live a happy life, hope that all this is just a bad nightmare and that I wake up soon to find that Max is all right, I look forward to each day I have, to spend with Max and I want to see him grow up like all the other children, I look forward on spending many many years with him and his family, I hope he don't have to suffer, all the hospital staff were so sweet, trying to cheer Tuk up, loving and caring for Max, each of them and even those parents who have their own little darling in pain, are also very caring for Max and his parents, hope their children get well too, lets pray for all of them , Vanessa and Haikel came too, felt bad for them because they had to stand outside while I enjoyed the inside of the room, sorry guys.