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.
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. :-)
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