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End of October 2008
Hello sweetheart,
It took a long time for mom to write again. I will briefly sketch how you are doing. You are in 3rd grade and doing reasonably well. In terms of intelligence you are a smart girl. Fortunately because your body lets you down quite a bit. You are 8 years old, 21 kg (that's pretty big) and you measure 1,14m. That is really on the small side.
Since last week we know that your left hand is plagued by 'childhood rheumatism'. The doctors call it the oligo form, which means that no more than 4 joints are affected. Your left thumb, pinky finger and wrist and maybe your right knee as well. You have no pain at rest but you can't apply pressure. That's why you said goodbye to your gymnastics group today. It did make mom sad to see you having so much fun and yet not being allowed to continue. The doctors think gymnastics is really too hard. A small tear. I know there is much more in the world than gymnastics but we just have to get used to that. You are so versatile with so many interests, we will find something that suits you. Recently you started taking flute lessons. I don't know yet if you like it and swimming also needs to advance to level B and maybe C. Swimming is very good for you. Today I taught you gymnastics at school and I saw for myself that you can't carry heavy balls. I feel very sorry for you.
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End of June 2009
Dear sweetheart,
Today we went away for a day just the two of us. The occasion was a hospital visit, but afterwards we used the second last day of the vacation to go shopping. Since a few weeks the rheumatism is in remission. That means that the symptoms have disappeared. Unfortunately, that does not yet mean you can stop taking the methotrexate. When you were just sick, 1 year ago, you were given tablets of 8mg. But because that was too little you went through 10mg to 12.5mg to 15mg subcutaneous injection.
You are and were a tough girl but those shots every Saturday, that was and is a real disaster for you. Because it was also very difficult for mom and dad, we called in the help of home care after I shot you 6 times myself.
Now we are 8 months further and you are doing well. You now have to take the MTX for at least another year.
We are beat.
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Christmas 2009
Liver function disorder for the second time. After the first time, we stopped for 6 weeks. Did result but switched to half dose, 7.5mg.
2 sisters, Janine (who is your and our dearest) and Vera (whom we got to know better and better) now come every Friday evening to give you a shot. However because your liver is protesting again we have decided to stop MTX. After a year and two months it is done with the MTX. Now to wait and see. The doctor gives 50% chance that it will go well. We think it is as high as 80%. You are doing so well. Now to wait and respond to the possibly changing situation.
To be continued.
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October 21, 2014
Just a little moment of rest. You are upstairs with your friend. Wout and I are downstairs. Messing around and looking at pictures. I work a lot, about 20 hours a week. You play field hockey, Wout and Dad play all their sports: tennis, soccer, judo, etc.
That makes for very little family time. I’m glad to have a week off together with you guys. Sunday the 4 of us go to the woods, that may have been six months ago. You take pictures, that’s one of your hobbies. Beautiful pictures! Yesterday the 3 of us went to Nijmegen. We went shopping and had a nice breakfast at HEMA and lunch at MacDonalds.
Buying clothes is not so much fun for you. You are still 150cm so you have to look for it in the children’s department. You have a distinct taste and love fashion. Most of it you simply can’t wear, which saddens you but saddens me too. There is nothing I can do for you except to search well with you. You said yesterday: “mom, I don’t think I’m ever going to fit into an XXS.”
We’ll see girl, maybe it won’t be so bad.
