Do the others matter?

Yesterday I was going up to the sleeping-quarters in the hospital, I was waiting for the elevator. It arrived but the doors didn't open. I heard people were locked inside but the door just wouldn't open. Two older ladies were coming down from upstairs. Somehow the doors were finally pried open so they could get out. I wouldn't have wanted to stuck inside too, so I asked them: "the doors didn't open, was there some problem?". They didn't even look at me, they just left me there, while one of them answered with complete uninterest in her voice: "well it opened for us, nothing else matters!" (You should have seen her expression, she really meant what she said, it was just astonishing...)
That triggered a thought chain in my mind... so if I get this right "nothing else matters", so if she could get out, the others don't matter at all, she could have also said: "I'm alive, nobody else matters!?" Okay, I know that's a bit extreme, but this casual remark just hit me so hard... especially now as we are waiting for a bone-marrow donor and I've read that in our country there's only a quarter as much blood-donors than needed. So "I got blood and nobody else matters?" I think that's why there's only a quarter of people available as potential bone-marrow donors. I as a living being have all the opportunity to save someone's life sometime just by being a donor. Every human being therefore has a great power inside just by being alive.
(...)
I would like to thank everyone very much, who told me that they would like to test themselves if they're suitable donors.
I took Zorka's blood and mine to the National Blood Supply Service on Monday, 18 July, typing is in progress. When we got the results of this, then we shall know exactly what conditions there are for someone to be a donor.
For starters, usually the brothers or sisters are suitable, however as Zorka doesn't have a brother or sister, we are in a worse position, but it's not impossible. Often there's a high level of tissue-identity even between two complete strangers. So I'm sure "our donor" is somewhere out there, we just have to find him or her.

Please help me, so I can climb this tree next year, too! - Zorka

The 2nd Cytopenia

The thrombocyte count on Monday was not very good. We had to stay in the hospital for replacement. First we were waiting, finally it arrived, the infusion finished, then we left. Zorka wanted to sleep at home once more no matter what. So I asked the doctors to let us home if there was nothing else that required us to stay. They agreed, so by half past 6 we were at home. Our happiness didn't last for long, because at around 10 o'clock in the evening, I felt that she had a fever. In this case there's no option, we have to go back immediately. I was barely awake by now after a really tiring day. There was much crying but I managed to finally persuade her, that the best thing to do is to go back. This fever was really unexpected, since all the cell counts were good (except the thrombocyte count, but she got a replacement of that).
We left for the hospital at around half past 10, we played twenty questions along the way. That kept me from falling asleep. We laughed a lot on the animals and things we guessed right. To tell the truth I was crying all along, but she couldn't have seen it from the back seat... she only heard my laughter...
We shot through the desolate streets of Budapest, so we got to the hospital very fast. By then the fever decreased thanks to the pill I gave her. Right then at around midnight they started an antibiotic treatment, since she has no immune system now, so it's necessary. Starting on Wednesday however she needed another antibiotic treatment, because the fever returned again and again. On Thursday she needed a blood replacement. This time two replacements were enough, while she needed 4 during the last period of cytopenia.
They draw blood from two different places because of the fever. The central one is not enough, they need a punctured, too. This had to be repeated several times, since a blood sample was needed when she had a fever and also when she had not. A branula was also needed and the cell-growth medication is needle punctured, too...
We have a lot of needle punctures behind us. This time around it was really a lot. But finally now some well-deserved playing at home!

A Little Girl's Dream

This morning she told me: "Mum, in my dream, I was eating, I dreamt that I was able to eat. It was such a good dream..."
How can fate be so cruel with this sweet little girl, that her biggest dream is to be able to eat something?! I heard again as she went to sleep that she is hungry... she is going to sleep with a rumbling stomach for days now...
...we were watching home videos of rabbits on youtube. In one of the videos the rabbit was eating a carrot but she asked me to switch it off, because it just made her hungry...
I'm just asking Fate, God, the Angels, myself, so that she could just eat whatever she wants, as much as she wants. I always loved to watch as she was eating. Her sweet round face as she is eating, it's a wonderful sight... I see that picture in my mind and I hope I'm going to see it again for real, not just in my imagination...

Our summer

We think of summer for a time now as a period to pull through somehow. It's a time of holidays and rest for everyone... but for us there's no rest and relaxation... It's getting harder and harder for me to hold together this house of cards alone... it starts to tumble here and there... but still I manage to hold it, so for now it stands.
Our situation is getting worse, since we incurred significant costs of various medications on top of the alternative therapies... and it just gets harder... (not to mention the emotional side of things...)
If you can help us even with the price of an ice-cream, please do, for us with Zorka even that much is a great help.

The second block of 7-day chemotherapy should have started a week ago. However they couldn't start it on Monday, due to the bad blood-picture and the side effects of the treatment, so we got a week. One week of summer... Beside the physical treatments we tried to strengthen the spiritual side of things as well. For 3 days we haven't even left the flat (due to the blood-picture result)... but still we tried to play as much as we could and on Friday we visited her little friends. :-) Her "healing" friends. Zorka was afraid to go, she wouldn't even wanted at first, worrying about "what they would say"? I told her that good friends don't care about whether she has hair on her head or not... I just had to tell her something reassuring, I saw she wanted to go, but she was just afraid...
She was very happy on both days and when we were coming home, she was so sweet, she said with that childish joy: "this was a good day"... and she had that glittering in her eyes, that just says never to give up... "I'd like more days like this!"
When we were playing she didn't think about her illness, she immersed herself totally in the game. But still she pulled her hat tightly on her head whenever it came to her mind. Just in case... It's kind of hard sometimes to tell these little children exactly what is happening with Zorka, why are things the way they are, but they were all very kind and supportive and even with their mere presence they caused much happiness to Zorka. I'm ver happy that fate has given us these two days.
After these 2 happy days, there came 2 days of horror... sickness, pain, suffering, so this happiness didn't last for long.
Strengthened in spirit, but weakened in body, we are leaving for the next treatment tomorrow... this was our summer... we shall see whether the second round of chemo can be started.

Waitlisted

Today we got the letter from the Child Transplant Committee that we are on the official waiting list with a personal id code (not by name!) awaiting a bone-marrow donor (http://www.ovsz.hu/hu/varolista1gycsontvelo). (HUN)
It's a very unusual (unusually bad) feeling to be on a waiting list and just wait, wait for someone... who could give life for the second time to whom I gave life once. Also there's the overwhelming feeling that we are at the mercy of someone else, since from this day forward, it all depends on luck... the right cells... at the right time, at the right place...
The only "plus" in all of this is that nobody has to die for Zorka to live (unlike as is the case with some other organs)... it's just 3 days in the life of someone, but a whole life for the one who receives that bone-marrow... the life of a 6-year old little girl, who means Everything for me.

I'd like to emphasize that we are NOT looking for a donor on any community site and especially not by a spam email. This is something I think should not be made fun of, and neither would we prefer to be the subject of spam emails that are hated by most of us. Yes, we are looking for a donor but that should have its own place and conditions. For example Facebook I think is not a suitable place for this.

Of course we are not rejecting any help offered, but at least I'd like to know about any helpful initiatives before they started.

More about bone-marrow donation can be found here (in hungarian):

http://csvdonor.ovsz.hu/sites/cs/csontv/csontveloszorolap.pdf   (HUN)
I suggest anyone interested in more details to please inform yourselves on the home page of the National Blood Supply Service and if you have any questions, please forward them to the contacts listed there and don't try to get information from blogs or messageboards on the net, since these are not as reliable due to their informal nature.

Finding a matching donor is a long process. Beside the same blood-type, the genetic tissue-identity is also a requirement.

With the allogeneic stem cell transplantation we risk everything on one chance. There is no such thing as a "little" success or a "partial" success, there is only complete success or total failure...

An unnamed benefactor

Today, Zorka received a book from a 7 year old girl. This little girl did a big thing, I think. She went into her little room and took a look around to find something with which she could cause happiness to another little girl who is in trouble. She gave something which was hers, which she could spare. Oh, yes, she gave something of hers. Of course there's not much a 7 year old girl has, only some toys, books, clothes, but for her - as for all children - these are valuable "assets". And she gave a piece of her riches to Zorka, and she just got richer by this selfless act of giving. I hope you stay such an angel even when you grow up! Zorka thanks the book very much, but above all, she says thanks for the thought and the love with which you sent it. :-)

struggle

We went back to the hospital on 29 June because of the nose bleed by mum's "ambulance car". Due to the thrombocyte count of only 5, the first blood infusion arrived right that evening. She got blood on the 30th, then thrombocyte on the 2nd and thrombocyte again on the 4th of July. During the 6 and a half days we spent in the hospital, her blood had to be replaced four times. /This is necessary because the chemotherapy weakens bone-marrow functions (this develops after the treatment is finished) so it can't produce enough platelets and red and white blood cells./ At first that high number of blood replacements might seem scary, but this wasn't the hardest thing in fact. She is a little more weary and sleepy but this is not painful at all. The other side effects of the chemotherapy however...
Like these (just a few side-effects): decrease of white blood cell count, anaemia, decrease of blood platelet count, bleeding!!!!, loss of appetite, nausea, vomiting, liquid-loss, oral mucosa / mucous membrane inflammation, discoloration of the oral mucosa, esophagus inflammation, stomach pain, corrosion of the gastric mucosa, bleeding in the stomach or intestines, diarrhea, large intestine inflammation, increased liver enzymes, conjunctivitis, corneitis, watering of the eyes, localized skin damage, rashes, itching, vein inflammation, blood-clots, phlebitis with blood-clots, allergic shock, infections, blood-poisoning, acute leucosis, feeling of discomfort, weakness, reduced weight, fever, shivering, acyclia (shock)... and so on...
This is just a list of words, which cannot express the pain and suffering we had to endure.
Her whole mouth, her food-pipe, her little tummy were all covered with fungi, so she couldn't eat. My heart broke to hear her little 6 year old soul going to sleep with her stomach rumbling loudly, but she just couldn't eat... she wants to, but she can't swallow. Not just food but not even water, even though just a few bites would have been very important due to her corroded stomach... You should have seen how she struggled to swallow just a little bite of food. She ate rice one grain at a time(!), ONE grain at a time, while if she could she would have eaten the whole bowl in a minute. This struggle, this willpower Zorka has... it's amazing. No, I just don't have words for this. After every bite, the nausea came. But we couldn't afford to vomit, since her wounded, blistery and corroded food-pipe would have caused terrible pain. So I just kept telling her no muggle, no muggle, no muggle... (muggle means nausea in Zorka's dictionary :)
This was so successful that somehow we managed to scare the "muggle" away... once I didn't say it, I was packing something... then I hear she is whispering something... I turned around to see her repeating with shiny eyes, almost crying: no muggle, no muggle, no muggle...
From 22,5 kilos she easily lost 5 kilos, which would be noticeable even on a grown man, so you can imagine how a 120 cm tiny little girl looks after losing 5 kilos...
Days gone by somehow, but at night we couldn't sleep much. Every 8 hours she got antibiotics with a dripping infusion and also pain killer pills (together with fungi treatment liquid, numbing and anaesthetic drugs of course) but it didn't kill the pain at all. Every half hour she woke up: "my throat hurts, it hurts so much"... and since I saw that the painkillers were not enough, I fell back to the tried and true method of murmuring: it doesn't hurt, it doesn't hurt. Zorka repeated that after me and somehow she fell asleep...
It was Friday night... we couldn't sleep again because of her aching throat... we heard from the street, a bunch of guys going out to a party or something, they were already in very high spirits... at first though I couldn't identify the sounds and neither could Zorka, but she looked up hearing the loud, cheering sound: "what's that, mum? Are they pricking her port, too?" (port = central canula, "installed" under the skin). I didn't know if I should laugh or cry.
She had another similar heart-gripping saying... I told Zorka we're waiting for the blood (this was back on 30 June). I saw in her clever, smart eyes that some question is forming in her inquiring little mind. "Go on, tell me!" - I assured her. "How interesting that up until now I gave my blood and now I'm getting blood... until now I gave my blood into those little pipes..." Sadly I explained her that she didn't exactly "offered" that blood, but it was taken from her because of the examinations. She said if she could, she would give her blood. She has such a big heart! If she could, she would, I'm sure of that!
Back then we could talk at least... but not anymore, she started lisping, since the pain is so intense, she can't quite open her talkative little mouth...
On 5 July, we could come home, with a thrombocyte count of 15 (under 20 it MUST be replaced). We were allowed to come home for one day, home is home after all... of course this was not my decision, our doctor allowed us to come home.
When we got home I rushed to the pharmacy to get all the meds she could take at home: antibiotics, stillers, anaesthetics, mouth sterilizer, etc... "lucky" that we have a subventioned health-care card only it's kind of useless. I paid 13610 forints in the pharmacy... (the amount of subvention is a grand total of about 1500 forints...) that's the way it goes...
Every minute we're afraid of a spontaneous bleeding, since the cells responsible for blood clotting could not yet regenerated.
But we'll get through this difficult time too, 'cause there is no shortage in strength or willpower, only in thrombocyte count... (but this latter can be replaced, while the former can not). So we are going full speed ahead on the bumpy road to recovery!
Go on my little Zorka!

Time

Neuroblastoma is typically (with a 90% chance) a renewing tumor. In the vast majority of cases it attacks again right after the treatments (in our case that's not what happened and not by accident). This is even true in those cases where the tumor is located in an operable place and otherwise the little patient is "asymptomatic".
Of course we hoped it won't renew, but unfortunately a little living tissue still remained in the unoperable tumor mass. That's what might have caused in our case that we now need active treatments again.
To quote one of the professors, it doesn't matter how big the tumor is. Even a tiny little tumor can be dangerous and one might live with a relatively big tumor if the tumor itself is unable to live. Zorka was asymptomatic for two and a half years. I did quite a lot to sustain that condition. However we look at it we won - even though we have not achieved 100% recovery, not yet at least - the greatest treasure of all: TIME. If we win time, we win a battle! Why is time so important? For example the treatment currently used on Zorka was not yet available in Hungary in 2008 when Zorka's illness started. It's only available here for about one and a half years now. Doctors have very high hopes about it. Due to the fact that we won some time, now she can get this treatment... but again time is of the essence, because it determines when she can receive it... That's because the stem-cell treatment wears down the bone-marrow so much, that for a few years following it, there are only a limited number of curative treatments which might be used.
Meanwhile newer and newer options become available, but we need TIME for those, too.
What we achieved together is a really big thing given the conditions which classified Zorka into the so-called Stage IV, 3 years ago. Of course this greatly depends on the patient, how the patient deals with the illness, regardless of how young she is and of course the environment is also a factor.
I'm still going to do everything for Zorka, for her recovery. Of course this would not have been possible alone, without you! Therefore I'd like to THANK everyone, we'd like to THANK everyone who helped us during these years.
We use everything, every donation directly for the purpose of recovery.
/We sleep on an 18 years old ruptured bed, our door really is just kept in place by a miracle, the kitchen is the same as it was since the window replacement 3 years ago, but all these do not matter./ What matters is that I can give, I can provide Zorka the conditions that are crucial to her recovery. But to do this I had to ask for help from you. When the life of the only child you have is in danger, you have to do everything, I have to do everything. And that's exactly what I'm doing: Everything.
If you can support this fight, please help! (Our contact details can be found on the "Support" tab above).
"Whoever saves one life, saves the world entire."

When a minute lasts forever

She hasn't eaten anything the whole day. It was in the afternoon. We thought we'll play something since there will be a control examination the next day and after that we can't come home for a while again... but until then, my dear child would spend every minute playing.
We just wanted to play a little, that's a small wish, but it was not about to happen.
15:45. "Mum!!!" Bleeding again!!! Her nose started bleeding. Again. I knew she doesn't have any thrombocytes, so the bleeding won't stop. And of course there could be hidden bleeds inside, which we might not even see, but they might be fatal. Since the bags were already packed we just had to throw them in the car and pick up a few more things. Meanwhile rain started to pour down real bad! Soaked up to my knees, I packed into the car really fast and also put some stiller on a gauze, which in this case doesn't do anything good, but at least we had to try. She squeezed her little nose as she could with it, but she was crying all the while. She is familiar now with the feeling, the blood goes down into her throat, but she is afraid of it very much, if she ever throws up blood, she gets hysterical. In her eyes I saw fear. I never saw that before, she NEVER was afraid before at all. I still managed to calm her somehow, amid all the rush with the bags to the car. I could only say: "everything will be allright." And I could say it out loud even though a kidney bowl was full of blood already, her thin, little legs were shaking like when you are having an important exam, she had nausea and stomach pain, the threat of bleeding out looming over her and she hadn't eaten anything for two days... and I say something like that?!? But she still believed me, she believed that everything would be all right.
16:00 Let's go! Rain was still pouring down, but the real problem was that the water which suddenly poured down couldn't yet find its way off the road. At first the tires of the car were just spinning around on the water, though all I wanted was just to go, go, go! I so wanted to go along, but I got a red light, then another one and then yet another one...
16:20 We're at Martonvásár, on the freeway, but every minute seems like an eternity. And it's just raining and raining. I was driving blindly, windscreen blades were on max capacity, but I still couldn't see anything because of the water pouring on the windscreen, it was as if we were driving into nothingness...
We get to Budapest under record time. I can only hope that no speed meter caught us on the freeway.
16:30 Rush hour in Budapest. We slow to a crawl. It was nerve-racking, especially in such a situation. With a speed of 20 km/h, but 200 of blood-pressure we finally make it through the city. We are in the finish, at last. They took some blood from her. Soon we had the result which I already knew without any laboratory examination. Her thrombocyte count is 5, so effectively none at all! (I don't know by heart the exact reference values, but we used to be happy with a count of 200). Meanwhile she got sick, thrown up, but I don't know what, since she didn't eat anything today. This is a bad sign, it means yesterday's food is still in her stomach...
The blood-picture and the symptoms are very bad. We are to go into the isolation room. We were never here before... We're waiting for the blood. We're playing.
20:00 They hook up the thrombocyte concentrate. Meanwhile we still play, we try to make up for what we missed at home.
Her little heart is not that strong any more, so she goes to sleep soon. Hugging each other we try to rest after this horrible day. - A.

Again and again

By the time I was 4 years old, I suffered more than a grown-up will in a whole lifetime. I endured such pain that others can't even imagine...
And now I'm getting chemotherapy again. The first block lasted from 20 June until 26 June. For the whole time a little pipe was dangling from my body, which continually dosed something into me. For the first 4 days it was relatively mild, there was some type of chemo treatment, then 24 hours of hydration. So I "only" had to endure the nausea. Then the fifth day came. From then on, I got the chemo 24 hours each day for two days continually with concurrent hydration. From V-shaped distributors, a total of 4 pipes were attached to me, one into my port, one into my branula. The infusion pump stand looked like a Christmas-tree. It even had the colors, too, because one of the chemo drugs (called adriablastin) is red colored. Every 8 hours I got some nausea mitigating medication.
Then came the last day and finally we could come home. I was waiting for that eagerly, the chemo never took so long to drip. Sunday morning, 11 o'clock, there's only a few millilitres left, but it goes so slowly. We started watching Harry Potter and the Goblet of Fire together with mum to kill the time while everything dripped down on the infusion completely. Suddenly I told mum to give me a hanky because I had a drop at the nose. At first I didn't see what was dripping from it, but then I got frightened because it started bleeding badly, emphasis on badly, blood was just flowing from it freely!! Doctor, nurse, mum, grandma, everyone gathered around me, but it was just bleeding and bleeding... the blood even went down my throat too and almost immediately we saw it come up again :( (can't put it more nicely), it was very awful, I was very scared, everyone was scared. Mum also got very frightened. Meanwhile my blood-picture was completed and it showed that I hardly had any thrombocytes left, which would decrease anyway during chemotherapy treatments, so it's sure now that I'll get blood infusion this week...
After about an hour, the bleeding ceased slowly, because I got a gause up in my nose, soaked into some strange liquid... We begin to calm down...
So there we were, everything packed, ready to leave the hospital, it was around 3 o'clock in the afternoon. They pulled out the "butterflies" from me, but as we expected, since I don't have much thrombocytes left, even a small needle puncture bleeds for a long time. We went back to my room to get the last of our bags. Mum brought everything down to the car, I was the only one left to go ... and after that moment I remember nothing more. My mum will tell you the rest now...
I only saw that she is not standing too stable, she just said "Mum, I feel dizzy" and collapsed right there on the spot. Fortunately I managed to catch her, the bed was close, so I put her in the bed... her eyes turned up and her whole body was just so... limp, I saw that she was unconscious, so I was just screaming for the nurse to hurry... maybe because of the screaming but after just those few seconds while the nurse got to us, life was returning to her eyes and she was looking at me again... no, I just can't put into words that feeling, that fear... This was the first time I really felt that I could lose her. Maybe it was because of the blood loss, or the side effect of the chemotherapy or for lying in bed for a week... ultimately it doesn't matter why, but as I was holding her unconscious body, there's no word for it... it was horrible...
Finally we got home. We're at home, but in any moment we might need to go back. If she would got a fever, we would have to run for the hospital... So our bags are packed, we're ready to go any time. But until then, every minute here at home is a precious gift. - Z., A.

Dripping for 4 days now...

On 20 June 2011, the chemotherapy started, of which there are lots of types available to cure various tumors. Zorka now gets one which is only available for about a year in Hungary. Previously they used it only abroad, but it has become available here as well. One block (that is, a treatment period) takes 7 days. This is a so called pre-treatment. This 7-day block will be repeated 4 times. This is absolutely necessary for the application of the main treatment afterwards. We are on Day 4 now. The curing "poison" - a strange phrase indeed - is dripping into that little body for 4 days now. Starting tomorrow, two chemotherapy drugs will be administered via two pipes, 24 hours a day. One will be connected to the central canula, the other to a branula, which will be inserted for just these few days. Two pipes, two drugs, two days non-stop, for one life.
(...)
We didn't cut her hair. Zorka wanted it this way. Each morning I collect her fallen hair from her pillow into a kidney dish.
(...)
I can only feed and give her water by playing games, otherwise she can't do it. I need to sneak eating into our games, that's how she can eat some minuscule amount. After a chemo treatment, she gets more than 2 and a half litres of infusion. That's the amount of liquid needed intravenously. It's very hard for her to drink beside this, mainly because of the nausea.
(...)
My lively and pretty active little daughter got tired very fast and dropped off to sleep. She needs her strength for tomorrow. We are going to be even more smart tomorrow, there's still lots of work to do until complete recovery. - A

Request for help

"I'm very optimistic! I expect the chemotherapy to end without complications. Then just 3 more days and I can go home. Mum will then wage a war against the invisible germs. Sterilizing our flat will take half a day. She found a temporary home for my little guinea pigs. Sadly they can be nowhere near when I get home. Please if you can spare some disinfectants, like Domestos, please help me by sending it to my Mum. We need an infinite amount of these, since we need to sterilize our home continuously for quite a while.
For 3 years mum bought me a curative fungal product, which I took continuously. For the last half year however I couldn't take it because we couldn't use it beside my regular medications prescribed by the hospital. This fungal product costs 43.000 hungarian forints each month, but mum found one which costs only about half of that. Please, if you can, help her so she can buy it for me. Last time around this product greatly contributed to the fact that I endured chemotherapy quite well. My blood-picture stabilized relatively fast, so they didn't need to postpone further treatment, which was very good. I need to get stronger, to endure the treatments well this time again.
As you know, I only have just one wish!" - Z

My name day 19.06.2011

We played all day with mum, until I got tired. I was Hermione, mum was Voldemort :) We came up with funny stories and even involved my plush toys in the game. In the afternoon I wanted to go get an ice-cream, my favorite is the pear flavored. We took a good walk afterwards. My day was reasonably good and pain free. We have one more day here at home, resting, until the treatment starts. Mum is going to buy a few more things I'll need in the hospital. I'm going with her, because I always liked to go shopping with her so much. Due to the cytopenia, I won't have a chance to go with her again for a long while.

Fate is strange indeed, my treatment will start on 20 June, which was my happiest day a year ago when I heard that a wish of mine will come true, thanks to a generous offer.

One more day...

Happy name-day my dear!

I wish I could give you a really happy name-day. But it is a gift in itself I know, that we can spend this day home at least. So I do not wish, but rather I promise. I promise I will fight for you beyond my strength, I will take every opportunity which might get you closer to your healing, I will stay beside your hospital bed day and night, encouraging and strengthening you (though this is not really necessary, since I don't know anyone in the world braver than you). I promise I will make you smile each day, like I did for the last 6 years, be it even though the darkest period of your life... like you smiled today when you saw that little bouquet and you knew that this will be your day... Happy name-day my dear! Mum

My current condition 17.06.2011

"Our doctor from Budapest called mum to tell her that they are going to start my 7-day chemo treatment on monday. During those periods when they are not dripping some meds through the infusion, I'll get a hydrating treatment, so for 168 hours my movement will be restrained by a half-meter long infusion pipe. But this is just the "easiest" part... there are also pain, possible infection and lots of side-effects.

Tonight as I slept, my mum hugged me and I was holding her hand. Maybe this is what I'll miss the most ... when can we sleep like this again...?

Like 3 years ago, I have to part with my little pets, whom I like so much. A year ago I got two little guinea-pigs. I hope we can find a good owner for them.

This time the treatment will be much harder to bear. Last time I was very little, just 3 years old when it happened. Of course I knew what's happening to me, but now I'm much older and I became more mature, I'm a little adult in fact...

Though we depend on donations and we own practically nothing, I still feel we are very rich, because we know what is love, what is the true meaning of one minute and I also know what a priceless thing it is to wake up home in my own bed in the morning. With this richness will I start my fight on monday!"-Z

My current condition 16.06.2011

"Yesterday they did the bone-marrow biopsy. I was put under, so I felt nothing during the process. They asked me what's my favorite tale and I started answering, but I dozed off mid-sentence. I woke up about 20 minutes later, and then it didn't even hurt that much ... but it started to hurt now. Mum bought me a plaster with Winnie the Pooh on it and we changed the bandage today. I'm having nausea all day. My doctor is on vacation now, so we have to wait until he comes back. We can talk to him about my further treatment on June 20, the earliest. We have to wait till then. It's very bad, because I'm hungry but I can't eat. Since the nausea is caused by the tumor, doctors say there's no medication for it. Mum always draws away my attention from it, that's the most effective "treatment" for now, but the feeling of nausea always returns eventually again and again. Then mum comes up with another thing to draw my attention for a while ... and that's how my days go by...

Today I bid farewell to the kids in the kindergarten. Lately I was getting treatments which allowed me to go to the kindergarten. It was so good! It was so good to be a "normal" child! One of the girls told me to get well when she said goodbye to me. We spent only a few minutes in the kindergarten and went home quickly because I'm very weak. Today is for a week now that I can't eat and having nausea. I lost 2 kilos during this week.

We have to endure 3 more days somehow..."-Z

My current condition 14.06.2011

"Together with my mum and grandma today we went to the oncology department of the hospital in Budapest, where I am being treated. I was feeling really bad. Mum told everything (about my symptoms, my current condition, etc...) to my attending doctor who decided to hospitalize me for a 7 day session of 0-24 chemotherapy. Before this they did an ultra-sound exam as well. When the time came to go to my room, mum told me what will happen. I started crying, hearing that my beautiful hair which had grown so long by now, will fall out again. I was crying so much, that my mum asked a kind nurse to bring a psychologist to me. She arrived shortly and took me for a talk. Later she told mum how brave and positive I am toward my illness and that my willpower is so great. She concluded this from those interesting little games we were playing during the interview. I was not crying any more over the fact that my beautiful long hair will fall out again. So we were waiting for the chemotherapy to start. Before that, however they hooked-up an infusion on me - to treat the thirst and hunger I was suffering from for the last four days. We were waiting patiently in the waiting room for the infusion to run its 4 hour course and save me from dehydration. My doctor thoroughly looked over my medical evidences of the last few months and decided that the chemo treatment will not commence now. First we are going to wait for the result of tomorrow's bone-marrow biopsy. I remember the bone-marrow biopsy 3 years ago, like as it happened just yesterday. The place of the bone drilling hurt very much when I awoke from narcosis. But just like back then, I'll go through it again just as bravely!
We leave for Budapest again at dawn tomorrow. I'm going to endure the pain courageously and calmly and with enormous bravery. I hope very much that after the surgery I can still remain strong enough to return home soon to my little toys."

My current condition 11.06.2011

"I couldn't eat today. The nausea is almost intolerable, it attacked my little body so suddenly. Just two days ago I still ate with an appetite... now I'm hungry, but I can't swallow my food. All day, I'm half-sitting, half lying down, this way I feel a little better. I'm watching Harry Potter all day today.
My mum told me if I'm not drinking, I'll dehydrate. So I try to drink in tiny little gulps. I do this however hard it is, because I don't want to be pricked and get into a hospital again. I spend lots of time there already anyway. With teary eyes I swallow again. I'm a big big fighter."

about neuroblastoma

http://www.youtube.com/watch?v=n1v_IHg1EDc