in English again....

Sunday 2nd of March 2014


Coping with Disappointments



Noar is back in hospital. He had a good couple of days at home.  
Last Tuesday we got some platelets and bags of blood and Noar was back in business. Easier said than done because it was after 17:00 o’clock and the Children’s Outpatient ward was closing at that time, so Noar had to move to another ward. 
Unfortunately the people working on this ward (L1) weren’t as child friendly as at the Children’s ward (M2).  Noar had an incompetent jerk who announced that he would take out the VAP (Venous Access Port) with the strength of the muscles of his right arm. Noar asked him politely if he had any experience in this, if not, to get someone else to do it. Suddenly the jerk wasn’t too sure of himself anymore. The second person who showed up at Noar's bedside was experienced in removing the VAP. She looked at it and pulled it out with a firm tug, which resulted in an awful lot of bleeding. She had 18 years of experience, but regrettably she wasn’t moving with the times; the VAP system had changed a couple of years back. The jerk, who now also had returned, turned pale at the sight of so much blood and left without taking any action. Thankfully, just before he left, Haysam did ask him for a couple of gauzes and wipes. The bleeding was long and heavy and when the jerk returned, the bleeding had just stopped under expert guidance of Dr. Said senior. 
And Noar? He got a new traumatic experience to go with the others. And it was a waste of new blood anyway, according to Noar. 

But after this horrid experience, he was able to go home again and we had a couple of good days at home.  It was nice to do “normal” things for a change. Just doing grocery shopping, eating at the table and even quarreling. 
Just being together. 
Thursday I thought Noar was going downhill again. He was tired, didn’t want to get out of bed and once he got out of bed he went to lie down on the couch immediately. But he felt alright, we even saw the movie Insidious 2 when Haysam was at the movies with the girls (Even I got a bit feverish watching this movie). 
In addition to that, Noar had a headache. At 19:00 o’clock I gave him a painkiller for his headache, but I felt the urge to check his temperature. My gut feeling was right; right at the start the thermometer showed 38, 1 Celsius before Noar threw the thing to the other side of the room where it took its last breath…….
I understood his reaction. We all know what this means: back to the hospital…..
This is a disappointment that is difficult to digest. 

Fortunately we could go to the Beatrix Hospital straight away and after a number of tests he was back on the M2 ward at 21:30 o’clock.  We did ask for a more experienced person to bring the VAP in again and fortunately it was painless this time.  I went home around twelve AM, leaving my men at ward M2 of the UMCG, a  place that, strangely enough, feels a little bit like home nowadays. 

The way things look now, it’s going to be a long stay in the hospital. First antibiotics, probably for a week and then the 3rd chemotherapy. 
I’m almost too scared to ask…time for a continuous flow of get well soon cards again!  I know that most of you have sent him a card already, some of you more than once, but Noar enjoys them, and he’s looking forward to them. 

And believe me, there’s not much to look forward to right now. 

He’s in ward M2 room 3 at the UMCG. 


















There’s no Place Like Home………



We’ve been home for over a week now and everything is going well. Noar’s a lot better than the last time he was home. That time he only lay on the couch and didn’t move. Now he is mobile; he even walks to the toilet and showers by himself and he doesn’t lie in bed all day. Indeed, he doesn’t even need his afternoon nap. 
Notwithstanding the fact that I see him looking better than before, the unrest stays. The whole day I’ve got the feeling as if I were going to the dentist because I have a cavity. I secretly feel his forehead for temperature regularly and ask him if he feels alright. He does feel good, I can see that, he even eats and that says a lot.  But…..something doesn’t feel right.
Last Friday we had to go back for a checkup. His Hb was too low so he had to get another blood transfusion.  And this took the whole day away. What a hassle.  Whereas someone else takes snickers or a mars to get some energy, Noar gets a couple of bags of blood. He genuinely felt better when we went home.  On our way home we came to the conclusion that we had a good time together. There was loads of ice skating on TV so it was fun.  It was a bit tensive to see if he could go home or not because of an increase of temperature, in the end the blood transfusion came so he could go home with us. 
His platelets were very low (They make sure your blood clots). So we expected to go back to hospital for a platelet transfusion.  Indeed, after eating a bag of Bugles, his mouth began to bleed that evening. We waited to see if it would stop.
On Sunday the bleeding hadn’t stopped. We wanted to wait till Monday because we all didn’t feel like going to emergency (the Beatrix hospital was closed for the weekend).  We just enjoyed a stroll round the Hoornse Plas. Noar and me went two rounds. Noar albeit in a wheelchair, but he was just out and enjoying himself. It was very confronting to me, everybody enjoying the lovely weather: children playing soccer, running, playing, rollerblading and I pushing my child along, my ever so pale child in his wheelchair with his probe tube…..
Everybody was looking, people try not to look but they do, I got a bit of a snappy feeling about this: “Can you see!”
Suddenly everyone we passed greeted us, such politeness. Is this what pathetic people evokes in others? Or is it a good reason to just unabashedly watch a small fat lady, with her face red from pushing the wheelchair (or from annoyance), and her pathetic, sick, pale child?
That evening we had pizza to eat away the frustration. Just all of us eating the emotion away, it helps