2011. augusztus 14., vasárnap
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!
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...
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...
2011. július 20., szerda
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.
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/
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/
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...
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/
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. :-)
2011. július 10., vasárnap
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!
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!
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