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."
2011. július 7., csütörtök
2011. július 6., szerda
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.
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.
2011. június 29., szerda
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.
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.
2011. június 27., hétfő
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
(...)
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
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
2011. június 23., csütörtök
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
Feliratkozás:
Bejegyzések (Atom)