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!