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