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.