14 January /Wednesday/
This morning, again “nil by mouth” as I had to have tomography and they also took some of my spinal fluid. General anaesthetic again...Mummy is taking it really badly. Yesterday’s results show that in my blood there is I 69% of lymphoblasts (immature lymphocytes- cancerous cells) and 92% in my bone marrow. They didn’t manage to attack the spinal fluid or my joints, thank God. They started the treatment. I received first steroids. I had to have drip put in my arm. Nurses tried five times to put it in as they couldn’t find a vein that, strong enough to hold it. It was very,very painful. We spent an hour in that room and mummy was crying all the time. Later on they will fit a central drip- straight to a vein near the heart but before they do my red blood cell count have to go up to at least 50 thousands(otherwise blood doesn’t coagulate), I’ve only got eight thousands of them now. Healthy children have at least 100 thousands. So, to improve blood results, children here are given blood. It is very important that there will always be enough blood for us.
13 January /Tuesday/
I couldn’t have my breakfast or anything to drink this morning as I had to go under the general anaesthetic so the doctors can drill out a bit of my bone marrow( from my hip) to check how bad it all is. They x-rayed my spine and wrists to check if the cancer spread there as well. Grandpa arrived from Lodz to see us. Mummy and daddy went to see our doctor and. There was this professor of oncology there as well, not very pleasant bloke like he doesn’t give a monkey about anybody’s feelings. He doesn’t usually speak to parents of children like me so it looks like it’s serious. I don’t think it was a nice experience for them as they came back to me looking terrified. I heard them talking to Grandpa that doctors confirmed I had Acute lymphoblastic leukaemia, that its developing really fast and my liver has gone very big with all these bad cancerous cells in it. And that because I’m only 14 months old treatment will be very hard and damaging to my little body...
12 January 2009
Today everything began, well...it started while ago and we’ve only found out today that I probably have leukaemia. But we have to go back in time a little as the first symptoms happened on Christmas Eve...We all, (mummy, daddy and me) went to Wroclaw, to my grandparents, everything was absolutely fine during the few hours drive from Warsaw, then I went to have my usual afternoon nap and when I woke up I had a very high temperature - over 39 degrees. There was nothing else wrong with me. My parents decided on calling the ambulance, just in case. Doctor didn’t diagnose anything and just gave me Paracetamol for the high temperature. Mummy thought that I had the urinary tract infection again and because we were going to fly to England on the 26th of December she wanted to make sure if that wasn’t the same infection again. So we went to the hospital (emergency unit). Doctors did some tests and decided that it’s some kind of infection that I was fighting and that’s why I had high temperature, they also said that otherwise they can’t see anything wrong with me, so with more paracetamol we went back home where my parents could finally eat the Christmas Eve meal (very important Polish tradition-like Christmas dinner in England) that had started just before I woke up with the temperature. Now it was already 11 o'clock at night and we were all really tired. I still had some energy to open my presents though...
Next day my high temperature returned in the afternoon but yet again after some paracetamol it went away. On the 26th we returned to Warsaw and as I had temperature again we went to the hospital there. We had time as we were only flying late that evening. This time though on top of that they spotted some kind of ulcer on my chest, like a spider bite or something so the doctor decided that this probably was the cause of high temperature and gave me antibiotics (just in case...). They also send me to another hospital (one that I would end up in few weeks later...) for the USG scan. Indeed there was some kind of inflammation but doctor didn’t think that it was the cause of my temperature and said that it’s probably the beginning of some kind of infection as my lymph glands are enlarged...maybe if he ordered blood test we would know there and than what it really was...
So, we flew to London. There my temperature was finally normal but I got some kind of rash on my skin, everyone thought that it probably was late reaction to vaccinations I had week before. On top of that I wasn’t really keen on walking (and I love running around) as if my legs were hurting but I couldn’t tell mummy as I can’t speak as yet.
On the 7th of January we returned to Poland. I was sort of ok, only the walking was sometimes difficult and after few days I got a snotty nose and had couple of small nosebleeds, on the weekend my Grandma noticed that my tummy looked strangely big and was very hard. The next day, horrible day, it was Monday the 12th and I had an arranged appointment to see podiatrist for the routine check up (it was booked weeks before), so while we were at the clinic mummy managed for me to see neurologist and paediatrician. I was very poorly that day. Neurologist couldn’t really do the check up as I wouldn’t walk at all and was crying all the time so he sent me to paediatrician without queuing. It was my favourite lady doctor that knew me very well and when she saw me she immediately said that I looked like a very sick child. Checked me out and she probably already knew the possible diagnosis but didn’t tell mummy, instead she sent us to the hospital. She organised a visit for us and told us to go straight there without stopping at home...and I’m still here. Mummy didn’t have nappies, food or toys for me with her as we were only going to see a doctor for a routine visit...And on top of all that daddy was in Lodz -100km away. It was only two of us...
They did a blood test, USG and x-ray of my tummy. My mummy didn’t know what and why they did it all, doctors didn’t say what they were looking for but said that we would not be going home that day because there was too many tests to carry out, and they moved us to the oncology ward...When mummy asked why, they said that there was a bed available and no children with infectious diseases, so it was the safest. After few hours four doctors came to see us. They said they didn’t have good news, I had very bad blood results and my liver was enlarged, they started explaining everything in the “language” only known to them, mummy doesn’t remember much from that conversation. They said that they suspected leukaemia...mummy collapsed onto a chair and started crying, she thought she was dreaming a very, very bad dream. Doctors said that mummy had to pull herself together because I could feel all the tragedy and sadness and that she had to be the one to give me strength to fight the disease. That the fight had begun for everybody. Mummy called daddy and told him everything, he was already on the train back to Warsaw. Then he came to the hospital and stayed with me while mummy went home to gather some clothes and bits and pieces we would need for the stay in the hospital. Mummy later spoke to other mums and found out that in small children there was a good chance to beat leukaemia but the fight takes very long time and most of it happens in hospitals. And that was the day one. There are four of us children here and four mums; there isn’t much space, no beds for mums so they have to sleep on camp beds or mattresses on the floor. Bit crowded but at least I have new friends to play with ;-)