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A Black Day……….



Friday the 10th of January 2014. We knew this year would be fierce. But this fierce? We couldn’t have imagined.
Thursday evening, Noar asks me if neck cancer exists. “I’m sure it does”, I answer. Whereupon he replies that he thinks he’s got it because he feels a bump on his neck.  I feel it too and in my (very expertise) opinion think it’s just swollen lymph nodes likely due to the cold Noar’s been having for a while now. 
On Friday morning Noar calls me. Slightly panicky; he can’t move his neck, he’s got pain near his heart and his throat hurts very much.  I decide to call the doctor anyway. He can see us right away. Then Haysam took Noar to the doctor immediately.  The doctor thinks it’s probably laryngitis and needs blood samples to see if antibiotics are needed in this case. 
The device, there to give us the answer, breaks down; it says error up to two times. Then the doctor sends us straight to the laboratory to get a blood sample. Afterwards Noar and Haysam went home and waited for the results there. 
At 14:30 I was supposed to pick up the girls from school, only to find out they were going to play at a friend’s house. I’m looking forward to a nice and quiet afternoon….how different it would be…
When I got home Noar was already waiting for me and said: “I have to go to the hospital immediately, but I’m not going”. We went anyway. According to the results he has too many white blood cells. Alarm no. 1 goes off.
 Arriving at the hospital we are immediately met by the staff, they check everything, including his lymph nodes, under his arm pits in his neck and his groin. Everything is swollen. Alarm no. 2 goes off.
After a two hour wait, three people came in to tell us the results….Big guns. Alarm no. 3 goes off.
Unfortunately my gut feeling was right. He’s been diagnosed with AML: Acute Myeloid Leukemia.
Noar has to stay in the hospital straight away. 
And then I had to make the most difficult call in my life; I had to call Haysam to tell him that his son has cancer. 
Noar was brought to the ward immediately and on arrival, a lot of tests were done on him. Mainly taking blood, a lot of that. Noar’s getting slightly desperate because of this and so are we all. Alas, we have no choice from now on we are being lived by the leukemia. 
Life as we knew is over….


Saturday 11th of January

Saturday morning the 11th of January, after a terrible night I wake up. Leukemia, the first word that springs to my mind today………
I drop the girls off at my parents’ house and drive to the hospital. I park the car, take a deep breath, then go in…..
When I got to Noar I was told he had a restless but good night.  It’s not easy after all that’s happened, as you can imagine….they took blood from him again and did a couple of tests.  Today we start with chemo therapy, but first there’s a bone marrow biopsy on the menu.  A bone marrow biopsy, something to really look forward to.                                                                                                   Fortunately Noar is put under anesthesia and things go well. He’s glad he woke up from the anesthesia, he had a good dream.  Thank goodness for that, good dreams are very welcome in times like these. 
Back at the ward the lifesaving chemo bag was already waiting for us. Very confronting but we assume that this will save the life of our son.  Come on with that bag!                                                Fortunately the chemo, dripping slowly into him, doesn’t bother Noar that much.  But for us, it’s a very hard confrontation.                                                                                                                                               For the next 12 days he’ll get a two hour chemo treatment and this will be going on for the next 6 months.  After the next treatment, there will be 8 days of chemo therapy. So after the 8 days of chemo therapy there’s a period of 21 days of recovery and then he gets the next treatment….very heavy. 
We have to be aware that, between these periods of time, he’ll have to be hospitalized for infections regularly. We'll have to take it one day at a time. This looks like the only way to stand and not fall apart. Fortunately Noar is a brave boy. He’s a Hero!
In the afternoon we were pleasantly surprised by a visit of his whole baseball team.  Their first training after the Christmas holidays was planned today, but the coach didn’t think it was appropriate because of Noar’s situation. On the other hand, a visit to the hospital was.  It was great to know that all his teammates thought so too.                                                                                                Noar was a bit more cheerful because of this. What a team spirit. Last season champions, hopefully they can pull it off this season as well.                                   

Monday 3^rd February 2014

The First Blow is Half the Battle

 

We’ve got good news; as some of you know, Noar had a bone marrow biopsy last Friday and since then we’ve anxiously been awaiting the results.                                                                                       Finally we got the redeeming word today: The first chemo did the job very well. It couldn’t have gone any better.  His bone marrow is a bit “empty” but this is the result of the chemo destroying all the white blood cells. But we are extremely happy.  Like the oncologist said, the first blow is half the battle.  And indeed it is.                                                                                                                                       He’s still in aplasia, in other words in a super dip that he has to deal with after the chemo destroys the white blood cells in the body. In general this doesn’t happen in every chemo, but in Noar’s case it does.  He still has a fever and doesn’t feel very well.  He had a blood transfusion today because his Hb content was too low. Because of the favorable results, we now have more time to strengthen Noar. It’s not directly necessary for a chemo. This Friday he’ll be getting another bone marrow biopsy. We sincerely hope that, when the chemo therapy starts again, he’ll be out of the aplasia. Then his body will have to manufacture some more white blood cells. We’ll have to wait and see….

Furthermore everything is going as per usual, we are getting used to the cadence of everything that has to do with the hospital.  Even Noar has resigned to it. You have to look at it in a positive way. There are good things going on as well.  Wolter Kroes (famous Dutch singer) coming to visit Noar this Wednesday for example. Who wouldn’t want that!                                                                                Imagine him missing out on that if he didn’t have aplasia and was just sitting at home. That would’ve been bad luck.

 

Saturday 8th February 2014
Huge Letdown


Last Monday we were so glad to hear the good news, now we are extremely saddened by the bad news. The oncologist indicated that Noar falls into the so called high risk category. This means that Noar falls into a category with a very high chance of the leukemia returning (recurrence). This also means that we’ll be going into the fiercest route of treatment: Stem cell transplant. He’ll have to stay at the Wilhelmina Children’s hospital for 2 months. His bone marrow will be completely switched off via very heavy chemotherapy. As a result of this his defense will sink to an absolute zero and because of that will have to stay in isolation for 8 weeks. Not something to look forward too.                              In the meantime, the girls are being tested to see if they are a match to donate stem cells. Luckily they both wanted to help their brother and didn’t grumble about it when they got the blood test sessions. Leyla even had the bright idea of mummy and daddy making more children to increase the chance of a child with “good “cells.  The chance that my daughters are suitable is small (25 % chance per child). If one of them can’t be a donor then the next step will be the world donor bank to find a donor whose D.N.A. matches with Noar’s. There’s a reasonable chance they find one.  Ah well, I’m not going to talk about chances anymore. We’ve been in the lowest risk group twice now; 20% chance of this illness and 15% chance being in the high risk category. We had bad luck in both.  Maybe we’ll have more luck this time. We’re keeping our fingers crossed.                                                                   Prior to going to Utrecht, Noar has to undergo another two chemo treatments. One of the two started this morning. We really hope he gets through this reasonably.  Greeting Cards still make him very happy. We’ll have to see on a day to day basis how he’s doing for receiving visitors. He really likes visitors, if he feels well enough.                                                                                                                 To end on a positive note, he won’t have to go through the last two chemo treatments.  That’s positive. 
On another subject, our Senna has to do the Cito test (Dutch standard test to see what level and skills the child has. This to determine which high school is best for them) next week. This is not easy because of circumstances with Noar. She is very nervous and could use some support so I’m “whining” for support cards for Senna as well. Who can send her a cheerful card to support her?  Your support is truly appreciated!
If you don’t have our address, you can also send an e-card to: plkoch@hotmail.com

Things that make me happy


Lots of people ask the question how we  persevere  .                                                                                             
 It’s not a question of  perseverance, but just going for it.                                                                        


We don’t have a choice, it happens to us and we just go through it.                                                                      
Funny enough you tend to pick up where you left off after bad news. Momentarily we were taken off balance after the news about the high risk group, but we didn’t have time to give up, you just have to go on.  Now we are set on the idea, we see things less negative. This is how we adjust our expectations every time and because of this we succeed in seeing things in perspective in finding our way through the maze we were  thrown into                                                                                                         
  Naturally it’s not a rosy  prospect, this stem cell transplant. It’s a long and heavy route with trial and error, but we are strong enough and with the help from us all we’ll help Noar through these hard times.                                                                                                                                                                       Prior to this, we’ll have to go through the second chemo treatment that was started last Saturday. With a little luck Noar can go home this Sunday. Fingers crossed.                                                          Then we can recuperate before the third chemo treatment and then the big final in Utrecht.  A big venture.  It won’t always be easy but we try to stay positive and to enjoy the little things that make us happy at the moment.  I asked myself the question; am I really happy? Quite a troublesome question. At first you would think not with all the misery prevailing. I could however think of a lot of things that make me happy and this is where I draw my strength to make it through the heavy times.                    


 Here’s a list of things that make me happy:
Eating peanuts with Leyla in bed.                                                                                                                     
The dear children in daycare who always bring glee.                                                                                
Noar having a good day.                                                                                                                          Watching ‘Goede Tijden, Slechte Tijden’ (Dutch Soap) with Senna (Misery can always be worse, it helps to keep perspective).                                                                                                                                 
 A spitting corn grains contest.                                                                                                                       
Cuddling with my nieces.                                                                                                                                              
  All the dear people around us.                                                                                                                                                                  Noar’s happy face when I lose at Mario Kart.                                                                                                                
   My dear husband who accounts for (sometimes long) nights at Noar’s side.                                                                        
My awesome colleagues who really help me in a fantastic way.                                                                                     
Sven Kramer (Dutch Skater) winning Gold (excuse me for getting a bit happy about this).                                                
And not forgetting the lovely sun that shone so brightly through the window today. 


Enough to get happy about, I would like to say; Dear people, Seize the Day!