What's a good gift for a child who may be losing his battle with cancer?
February 6, 2014 5:17 PM   Subscribe

Sad times in my family. My six-year-old nephew's DIPG - one of the most devastating forms of childhood brain cancer - appears to be recurring after a "radiation honeymoon" that saw many of his symptoms recede for a while. The prognosisis is poor; the progression of the disease over the coming weeks and months will likely see him lose many basic functions - sight, coordination, ambulation - while retaining, to the very end, most of his intellectual capabilities. We are helping out as much as we can, but since my nephew is on the other side of the country, I was wanting to send him something that he'd find fun, interesting, maybe even useful. What that might be, though, I don't know. Suggestions?

(Here's some basic info on this awful disease.)
posted by soulbarn to Health & Fitness (33 answers total) 3 users marked this as a favorite
I wish your nephew and his family peace as they deal with this.

My first thought, given your description, would be a decent system to do audio books and funds to purchase whatever he might want to listen to...
posted by HuronBob at 5:31 PM on February 6, 2014

Does he like music? You didn't mention anything about his hearing. Maybe some good, fun music that he may have never heard before.

All the best to your family.
posted by roomthreeseventeen at 5:36 PM on February 6, 2014

It may not be your place to provide one, but a loyal adult dog seems like a good idea to me. It will help to have another being for him to care for, an individual with unquestioned loyalty who will not be all about his diminishing capacity and the impending tragedy of his death. Plus, I think the experience of a pet is one of the hallmarks of childhood.
posted by carmicha at 5:38 PM on February 6, 2014 [44 favorites]

I think right now might be the time to go all out with experience gifts. I don't know what a 6 year old likes to do, but now is the time for him to do it. I'd think about right now instead of weeks down the road. And I'd give it to him early.
posted by Houstonian at 5:43 PM on February 6, 2014 [11 favorites]

I am so sorry to hear about this. I wish your nephew and family great peace as they struggle with this diagnosis. I don't personally have any suggestions, but think you should ask the moderators of two support groups online that handle this disease if they would post your question.

The Yahoo DIPG Group's list owner is at: dipg-owner@yahoogroups.com

The Google Group has a form where you can email the moderator.

I would imagine those two resources would be able to offer a wealth of suggestions from a highly empathetic perspective. All the best to your family.
posted by amoeba at 5:53 PM on February 6, 2014 [2 favorites]

How about a small digital recorder, with push-button (tactile) operation (not a touchscreen), so that he can record stories? This will let him easily do something creative, and might be enjoyable for others, too. He could also interview people if he likes.
posted by amtho at 6:05 PM on February 6, 2014 [5 favorites]

Trivia. Tailored to his age. Think about adapting--quickly--something like Trivial Pursuit to his faculties.

And hugs. Lots and lots and lots of hugs.

who is chopping all these onions
posted by feckless fecal fear mongering at 6:31 PM on February 6, 2014 [3 favorites]

What about care packages from all over the world? I'm sure that many Metafilter friends from different countries would be happy to send a package with some age appropriate gifts and tokens from their home country or town, and some words of encouragement. You could coordinate the efforts? Count me in for an Aussie package :)

Best wishes to you and your family.
posted by Youremyworld at 6:40 PM on February 6, 2014 [12 favorites]

Think experience gifts (within his means to do) would be awesome. I also think some taking care of the parents would be useful, something that would give them more time right now with their son. Pay for a maid service, I imagine the last thing they want to worry about is cleaning, cooking, ironing, washing etc. If you can't go there to do some of this, then paying for it I think would indirectly give him the most important thing, more time with his loved ones.

I saw this story a few months back on BBC Click and this reminded me of that. Perhaps reaching out to any local foundations like Make A Wish etc can help something extra special come true.

Thinking of you and your family at this time.
posted by Admira at 6:41 PM on February 6, 2014 [1 favorite]

Get someone to draw a him as a superhero in a one-off weekly comic, now until whenever, doing superhuman stuff. Give him a way to eapfrog the bullshit of losing his physical abilities and propel him right into superhuman powers.

Does he know how to swim? Swimming, or supported swimming, may give him great relief and counteract some of the muscular weaknesses (though I see one symptom can be issues with swallowing, so that may rule out swimming).

His own tablet computer - for stuff like Minecraft, Lego, do DrawSomething with him, stuff like that. Let him be a kid. Set up Skype, email, etc.

Start working on ASL or "a super-secret spy code!" he can do with his eyes--so that if he loses the ability to speak he can still communicate. Make sure everyone's on the same page about what means what, obviously, if you're doing this remotely.

"Sponsor" some stupid stuff via care packages, like microwaving ivory soap, putting too much bubble bath in the bath, eating donuts for dinner, etc. (Get buy-in from parents, I suppose.)

Send him a letter telling him as many of the specific, cool, silly, unique, lovable things you remember and love about him. Don't make it sad. Just personal.
posted by cocoagirl at 6:52 PM on February 6, 2014 [3 favorites]

May your family have the courage to handle this.

Have you asked him what he has always wanted?

No dogs, he will only land in a shelter as it seems your family has a lot to handle right now. I am going to suggest this for you.
posted by ladoo at 7:41 PM on February 6, 2014 [2 favorites]

I don't know if you can do anything with this, and the book itself might not be just right, but Ann McCaffrey wrote a book called The Ship Who Sang. For some reason, it's come into my mind now. It was about a woman who had been a big shot in something like NASA but many years in the future. Anyway, she died and because she was so important, she was given the chance to transfer her "soul" - her consciousness and everything except her physical body - into a shiny new spaceship - the spaceship would be her new body. She would control the ship completely, but the ship would carry a crew and she'd work with them to accomplish whatever tasks they were assigned, traveling to other planets, etc.

I think if I had a six-year-old child with terminal cancer I'd consider delving into this idea with him, but I don't know anything about what that would be like, so it may not be appropriate at all. My heart absolutely breaks for these people and for you.

I worked at the Univ of AZ in the Astronomy Dept for a few years a long time ago. We had an astronomer whose speciality was the study of comets. He was glued to a telescope every moment he could get his name on the list - he was fanatical about it. Years after I'd left the UofA there was a comet that was going to crash head-on into Jupiter and the astronomy world was wired for it - telescopes all over the world were scheduled minute by minute for viewing time. My friend got prime time at a telescope in Australia - the #1 spot for watching the show. But, sadly, five days before the comet was to hit, my friend died in his sleep of a heart attack.

Another astronomer, a close friend of his, told me all his collegues were sad, but then figured he was so blasted focused on that comet he'd just decided to ride it on in instead of watch it through a telescope. That's the kind of stuff you get to do when you aren't tied to this planet.

Love and peace and energy to each of you.
posted by aryma at 7:57 PM on February 6, 2014 [3 favorites]

Way back in the day, my cousin, then aged 8, was on dialysis for 18 months in a country on the other side of the world. My grandfather used to make a cassette tape once a month reading a book out loud. My uncle would play the tape to my cousin every night before bed, so that she got a bedtime story from Grandpa. On days when she literally couldn't do anything else because her body was so weak, it brought her a lot of joy. They got through all of The Hobbit, and all of Anne of Green Gables

Perhaps you can do the same, updated to a podcast or audiofile that can be downloaded by your nephew's parents. Slightly more personal than any old audio-book.
posted by girlgenius at 8:01 PM on February 6, 2014 [14 favorites]

Count me in if you want anything from Germany, like youremyworld suggested.

I can't even imagine what this must be like for your family.
posted by LoonyLovegood at 2:48 AM on February 7, 2014 [1 favorite]

Get someone to draw a him as a superhero in a one-off weekly comic

Paging The Whelk. He draws comics and he is an awesome, awesome guy.

Ann McCaffrey wrote a book called The Ship Who Sang

Nitpick: she was raised from birth to be put into the ship because of a birth defect. Growth artificially stunted, put into a metal tube, brain hooked into the ship.
posted by feckless fecal fear mongering at 4:31 AM on February 7, 2014 [2 favorites]

My thoughts are with you and your family.

One thing is that your nephew is still a kid, and he deserves some silly. How about a moose hat?
posted by Ruthless Bunny at 5:15 AM on February 7, 2014 [1 favorite]

Please do not get a dog for these parents to have to take care of now, and for years to come, when they have so much else they are going through. The idea of a digital recorder sounds like a wonderful one, as does the idea of sending your nephew audio recordings of yourself reading stories. If he doesn't already have access to something he can Skype with you on, that would be great, too.

Otherwise, if you are able to do so, I think a visit from you would be the best thing you could do (staying at a nearby hotel so as not to burden his parents, if need be). Just go and BE there with him, make some fun memories together for you both (heck, if YOU have a dog I suppose you could bring her along for some quality puppy time) - and if while you're out there you just so happen to get a better sense of what kinds of stuff he'd like to have, all the better.

I'm so sorry your nephew and his family is going through this; my thoughts are with you all.
posted by DingoMutt at 5:31 AM on February 7, 2014 [2 favorites]

Look around in his area for therapy and hospice pets. People do have dogs and cats who could love and play with him and I'm sure you could find someone who would be happy to do regular home visits with a wonderful animal.
posted by viggorlijah at 5:41 AM on February 7, 2014 [5 favorites]

Something tactile like playdough with all the extras, like things that squish the playdough into worms and spaghetti and other shapes.

Something involving scent and taste - if dietary restrictions don't prohibit it then a great big box of every flavour jelly beans for taste and for smell, perhaps a collection of essential oils that can be associated with things like grass and clouds and flowers etc, which can be applied to pillow cases along with a story whispered in his ear by his parent or via a recording from you.

My thoughts are with you all.
posted by h00py at 5:45 AM on February 7, 2014 [2 favorites]

I like the moose hat idea, because I am a big fan of silliness. I think some silly hats or superhero capes, maybe with a picture of yourself in them with a note or video about how you filled them up with love and good wishes, so that he can feel them anytime he wears them.

If he's going to be spending a lot of time in a bed, could you get him something special to make it more comfortable and soothing? Like a blanket fort kit, a big green leaf, or a really cool nightlight.

My thoughts are with you. If you'd like anything from NYC, I'd be happy to help.
posted by inertia at 9:17 AM on February 7, 2014 [1 favorite]

I don't know where your nephew is located, but if he is in the Midwest or especially Illinois, you might want to get in touch with/put his parents in touch with the organization Normal Moments. They are a volunteer organization that helps the families of seriously ill children maintain some normal routines and spend the maximum amount of time together. Really awesome people--they will do literally whatever needs doing at home, and I think they also work to fulfill special requests a la Make A Wish. They offer tremendous emotional and moral support, as well.

So so sorry that your family is experiencing this.

I'm gonna go cry in my coffee now.
posted by like_a_friend at 9:36 AM on February 7, 2014 [1 favorite]

Thank you all for your very kind and thoughtful replies. I will try to implement a bunch of them. It is really hard; I have a three-year-old son of my own, and even with this happening in my family, I can't imagine. Death is everywhere these days, it seems; I lost my Dad last year, and several other friends are battling severe illnesses. It can sometimes be hard to see this all as part of life, and not just a shitty joke. I'm heartened by the words of Ram Dass, who wrote an amazing letter to the parents of a little girl who'd been murdered. Here's an excerpt:

"I can't assuage your pain with any words, nor should I. For your pain is Rachel's legacy to you. Not that she or I would inflict such pain by choice, but there it is. And it must burn its purifying way to completion. For something in you dies when you bear the unbearable, and it is only in that dark night of the soul that you are prepared to see as God sees, and to love as God loves."

(This is the entire text: http://www.kotapress.com/section_articles/healingArts/altTherapies/rachel_ramDass.htm)
posted by soulbarn at 9:54 AM on February 7, 2014 [2 favorites]

Just wanted to say you're in my thoughts, soulbarn. We lost my 6-year-old niece in September when her cancer returned after she'd been in remission for about 8 months (acute lymphoblastic leukemia). It's just not fair, or at all easy.

In my experience, my niece was inundated with gifts and toys and things and more things and more things and oh my god more things, what to do with all the things? Some she barely even touched. But what she really cherished was Facetiming with me and Grandma and her uncle, especially during long weeks in the hospital, when she wasn't feeling so well. We were always able to get her to smile & laugh. Maybe your voice and smile will be most precious to your nephew, too.

Keep your chin up.
posted by Falwless at 11:26 AM on February 7, 2014 [4 favorites]

I agree that Facetime or Skype is the greatest gift. If you can manage a trip to visit, that would be nice, too. Tell jokes, tell stories, just have a presence. The best gift in the world! Another nice touch is to send homemade treats. Hospital food is terrible and baked goodies, fresh fruit, and healthy snacks are coveted in the hospital system. If the child doesn't have an appetite, he can invite other children to share or it can be snacks for the family.
posted by LinneaJC at 12:18 PM on February 7, 2014

I am thinking that postcards from around the world would be really nice for him. I am going to contact a few of the posters here to give them my nephew's address.
posted by soulbarn at 12:45 PM on February 7, 2014 [2 favorites]

Please feel free to contact me. I would love to send a note and a drawing to him.
posted by These Birds of a Feather at 2:28 PM on February 7, 2014

I love the imagination adventures. You could find out what he loves and weave it into a story. I know there are folks who will right a story with your kid as the main character. I think there are some on etsy. Then when you chat on the phone you can make up more adventures. Make him laugh.
I am am so sorry this is happening. I can not imagine the heart ach.
posted by Playswithdirt at 2:55 PM on February 7, 2014

I would also be happy to send a postcard or little care package, if you'd like to memail an address. Sending hugs your way from Brooklyn.

It may not seem like the most exciting present, but I like to buy extra soft snuggly blankets for people who are going through difficult times.
posted by silverstatue at 7:51 PM on February 7, 2014

I would also love to be involved, memail me if you'd like. I'm in southern California so we could send Disney-related cards & gifts as well as some sand and shells from the beach, and anything else he might love.
posted by sealee at 7:59 PM on February 7, 2014

I'd love to send a card. I have a pretty one with a cat and dogs and a cow on it.
posted by amtho at 9:52 PM on February 7, 2014

I'd be happy to send a postcard from Spain. Or even a small package if there's something specific that would bring him joy.
posted by lollymccatburglar at 6:28 AM on February 8, 2014

Count me in. I'd love to send a card or some pictures of Cleveland.
posted by kathrynm at 8:02 AM on February 8, 2014

If you would like a postcard sent from Australia just say the word ...
posted by Lesium at 7:36 PM on February 8, 2014

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