A little girl at my kids’ school has been diagnosed with a blood disorder/illness of some kind. It is called HLH in Dutch, which is not very much help. I have googled it but I can’t quite work out what it is, it seems to be an immune problem at the cellular level triggered by some kind of other infection. The treatment is the same as for leukemia, but it isn’t leukemia.
In any event, she is confined to hospital and cannot have child visitors, or any visitors outside immediate family. She has to go to a Children’s hospital in Rotterdam so her parents cannot stay with her. I spoke to her mother today and mostly she is bored and of course frightened. They are going to shave her head this week and she is upset about that.
Lotte is eight years old and in the equivalent of US grade 2. (Any religiously minded who can spare a place in the prayer chain, it would be appreciated). She is on a special diet so food is out.
I am now trying to think of things to send her, mostly in the line of things to do as that seems to be her most pressing need at the moment. I have an enormous collection of DVDs which I expect to plunder for her. Beyond that, any ideas are welcome.
She also has two younger and one older sisters, and any thoughts for them are also welcome.
And the parents of course, but there is this cultural thingie going on such that "second order"acquaintances, such as myself, are not…expected? Welcomed? to intrude in that area. It’s hard to articulate. But in any event any assistance to the children meets no resistance because our kids know each other; assistance offered to the parents is, um, sort of seen as intrusive because we have not been friends. I think. (Maastricht, if you are around anywhere and can help me disentangle the social threads around “stoer doen/dwars doorheen gaan” I would certainly appreciate it. Cause I just want to give this mom a big ol’hug as she is unquestionably frightened out of her mind but that seems to be Not Done so I haven’t).
Could be. In Dutch it is Hemofagocyterende lymfohistiocytose.
I got phagocyte, so white blood cells. And I got Lymphocytosis, too many white blood cells. And beyond that, I got nothin’. Thanks, I appreciate the effort.
I just hope 8 year old girls pretty much like what 8 year old boys like – I have a lot of that. Since I have an 8 year old boy.
They are shaving her head this week and I gather that they will be giving her a wig made of her own hair. But a hat would be a good idea.
She is very particular about her hair, too, has been since kindy. She has about a million bows and barettes and heaven knows what all geegaws and furbelows for her hair.
So I am thinking that something pretty to put on her head would be nice for her.
Did the child play at your house? You might want to offer to let the other kids hang at your house on occasion so the mom can get things done, spend time with the doctors, or what have you. The parents may need time away from the other kids to make hard decisions. They may welcome time to work through these things without fear of upsetting the other kids.
If she’s bored, and can’t see anyone, perhaps she would like some video messages from her school mates?
If you could arrange to take some time out of a day at school and video tape anyone who wants to say hello to her, that’d be neat. You could put the clips on DVD and give her that (if you need help with the video-to-dvd thing, ask in GQ, we’ll hook you up).
If not video greetings, a collection of written correspondence - letters, drawings, poems, stories, etc - from her classmates might be appreciated and help her keep from being bored.
Also, in America, you often see stories about kids who lose their hair to cancer, and all of the kids in their class (or at least the boys) shaving their heads too. I wonder if this is something her classmates might be interested in?
I have a 7.5 year old girl, so I may be of assistence and assuming that Dutch children are under a concerted commercialized attack like their yankee counterparts.
My Little Pet Shop is quite the addictive girly toy. our house has been infiltrated by MLP.
Can you find it
kind of obooks are always popular. Chinaberry is my favorite kid-friendly,non commericalized kid related store. Advent Calendars are always fun for all ages ( if it is an expected long haul stay.)
During a book search on Amazon, I found this woman’s list . Might be fun to find books with a heroine theme to read aloud. Oh, and this
Some kind of CD player or MP3 with music and downloaded stories to listen too.
Practical items: hand sanitizer and nice facial tissue. ( The hospital stuff is crap.)
Activity type books would be good. Coloring books, books with scenes that have re-usable stickers to put in the scenes, etc. My 7-year-old daughter has some of the collection featured in the first eight books on this page. She loves them and they are very entertaining and cute.
I like the idea of a hat, but if she’s that into hair accessories, maybe an assortment of head coverings to suit her mood, etc.
Not really, one of her little sisters has been here to play with Youngest, though. So they have all been here, at least long enough to pick up their sister.
I gather she is waving off offers of help; but I went through a similar phase when caring for family members – I thought I should be able to do it all. I think she has a little of that, too. So maybe I should wait a week and offer again.
I am dying to buy her some books. Unhappily I am going to have to leave that to someone else as I have enormous difficulty figuring out what the reading level is of books in Dutch. I learned it at home from my husband and I never bothered to learn to read. So in many ways I learned to read Dutch along with my second grader.
I still cannot spell.
Maybe I should go Ask The Librararian, there is one here who has been very helpful in my efforts to find books for my own kids.
Thank you for this. My kids have a pirate ship book/playset thingie which they love. But they have had it for years and it’s hard to know with 8 year olds if they are more like 7 or more like 9, you know what I mean?
At least my son’s friends seem all over the map. The fact that they are in a combined age classroom mens they really are all over the map, but even the ones that are the same age.
Oh, I understand! A lot of it depends on the temperament of the child, too. My 16-year-old was still playing with Barbie dolls at 11 because, as she said “I have the rest of my life to be a grown-up, but I only have a couple more years to be a kid”. But plenty of other girls wouldn’t be caught dead playing with Barbies at 11. I just suggested the books I did because they were charming and clever, the drawings are sweet, and I think I was almost as taken with them as my little girl was!
Can I suggest that you think of the parents as well as the child? Offer to have her for a sleepover or something once she’s out of hospital. This gives the girl immediate hope and the parents future respite during a difficult period.
When she was 15, one of my closest friends was diagnosed with leukemia, and had a transplant, and went through weeks and weeks of isolation in the hospital, etc. It was really unfortunate that children (under 18, actually) couldn’t visit her, since she couldn’t see her friends, but even worse, she couldn’t see her younger brother, the boy who had donated his bone marrow and essentially saved her life (the transplant was on her birthday, Happy Sweet Sixteen). It was tough, and she was unbelievably bored most of the time, but she has been in remission for 10+ years now, and is an oncology nurse herself.
Anyways, all that to say that to pass the time she watched a lot of movies and played a lot of video games. Her parents ended up buying her a lot of movies during that time. I think the hospital rented out Nintendos or whatever console, and she got pretty good at most of those games. Her parents weren’t really the type to let her play video games for hours on end, but under the circumstances, they figured it was ok! I know she read a lot too. See if your friend can get a console for her room, and then maybe buy a game for her?
This may be a bit spendy, but I’d think a digital camera would be a good gift, especially if she has access to a computer. She will be associating w/ lots of new people and experiencing many new things, she could be encouraged to keep a photo diary, which will not only give her something to occupy her mind, but will be a great thing to have years from now. I’m being optomistic here, but even if the worst happens, I’m sure it’s something her family would cherish.
If she has web access then the Webkinz stuffed animals previously mentioned are a great idea. My daughter is 7 and is hooked on them. Each animal has a special access code that lets you log them in to the website. You then take care of your virtual pet, build a home for it and play games. Plus there is a kid safe chat mode (the messages can be restricted to pre-packaged messages or expanded a little but still be safe). The more animals she “adopts” the more she can add to her profile.
Tied in with this I would suggest a webcam so she can talk to and see her friends.
Besides hats, try headbands. My friends daughter loved them when she lost her hair. She would get plain white ones and color them with markers, glitter and sequins.
Arts and crafts also help pass the time.
The parents are going to be exhausted from handling their daily lives in addition to taking care of their sick child. Offer to babysit the other kids (maybe a sleepover), bring them prepared meals, get them a maid service to come every few weeks to clean their house so they don’t have to. Anything you can do to help take some of the pressure off them.
I’m just going to add my voice to the arts & crafts things. A pack of light construction paper; a wordless book showing how to do origami; some scissors; and pens/colored pencils/crayons can go a long way.
If it were me I’d suggest one of the less complex paper airplane books, too - but I’d want to check with the nursing staff at her hospital before doing that, to see whether they’d be willing to put up with flying art.
