When do I respond, and how?

[melaniered]

The manager of my department (DM) - for whom I don't work, but who co-supervises some employees with me - has a semi-adopted daughter he adores.  This in itself is delicate, because this child is actually his wife's granddaughter, but they have raised her from an infant, and she is now five.  She calls him Daddy, and about half the time he leaves for a bit in the afternoon to pick her up from school.  She calls him at work every afternoon, and usually I'm the one telling her to hold on while I find her dad.  She's also dropped by from time to time with her Grandmom/Mom (G/M), but she's always very very shy, hiding behind legs and not saying word one.

There is - or has been - a custody battle recently, where the birth mother (BM) who dropped baby off at grandma's five years ago and dropped off the face of the earth, now wants baby back.  It seems there was a car accident during the summer where G/M was on some prescription pain medication she shouldn't have been driving on, and BM got wind of it.  In the ER after the accident, there was a mass found on G/M's neck, but it was biopsied and no problems.  There was also a mass seen on little one's kidney (liver?  memory on this one a little vague), but not much was said more about that.  Also, since then, there has been much discussion of the time BM showed up for a couple of weeks and signed away rights to the little one, and now claims it's all a forgery, despite being notarized in her attorney's office.  Honestly, it's a horrible soap opera.

Now that you have the back story, we can get into the real hairy stuff.

Because of this child's questionable custody status, I guess, and for whatever other reasons, she's been a Medicaid baby all her life.  The HR lady at our office has specifically prompted DM to add his wife and little one every year during our open enrollment, and finally this year he did.  After the accident, and we were all a little pleased when little one's perpetual ear infections had not made her impending tonsilectomy (sp) a pre-existing condition.

So she had her tonsils out last Wednesday.  Sunday they were at the ER.  Monday they were back at the ER.  By Tuesday of this week, they were in the next state at the Women's and Children's Hospital, and little one had been diagnosed with neuroblastoma.  Now they're saying Stage 4.

OK, here's the deal.  I'm catching most of this second hand.  I've not been told most of it directly, and even if I had, it's not my business to tell DM's business, and certainly not my business to tell his daughter's.  I'm preaching hard to the other people in my department that we don't have the right to say why he's not in.  He's not in.  No is a complete sentence.  Can someone else help you?  Can I take a message for him?  No, I don't know when he'll be back in.  Are you sure someone else cannot help you?

Meanwhile, despite not having been told any of this firsthand, I want to do something.  I knit.  This is what I do.  Can I start a chemo cap for the child, having heard third hand that they're hoping she'll (gulp) survive three rounds of chemo?  Is it negative thinking to do that?  I'm thinking I can knit her a cap and some matching fingerless wristwarmers - I know my hands were always cold when I had an IV.  Is it presumptious to do this before I'm told?  Is it presumptious to do this for a child who refuses to speak to me, even when directly spoken to?

When the owner of the company called me this morning, I told her we needed to quit wringing our hands and do something productive.  She knows the child's pediatrician - ask if we can organize some kind of blood marrow screening at the shop or something.  I probably snapped at her, just trying to be proactive for once in this child's life - I don't know.  I want to help.  I want to stage my help correctly.  I want to be supportive.  I want to set a proper tone for the office.

Hold my hand here, somebody -

LanieRed

[Verruca]

::holds Lanie's hand::

I think that knitting for the child is a wonderful, generous idea.  If you don't want to seem negative about chemo, the cap and wristwarmers will still come in handy in the hospital - the rooms can be rather cold.

I think that you're also on the right track in not wanting to be gossipy about DM's situation, particularly to those outside the company.

Don't worry about the fact that you don't have first-hand information.  When my father died unexpectedly last summer, it was a relief to me to know that I didn't have to explain anything to anyone at the office.

Please remember that you're doing a lot to help DM just by setting a good example at the office - by keeping his personal information private, by not participating in office gossip, and by helping keep your department running smoothly in DM's absence.

Your instincts are good and the fact that you're thinking about the most tactful way to help means that you'll be fine if you follow them.  ::hugs::

[skadoo]

I agree with Verruca.  Your instincts are great.  Don't discuss how you know or what you know and when you found out.   They don't care and not having to tell the horrible scary story again is probably a relief.  Knit away and either deliver it in person or send it via mail.  It depends if you were friendly before. 

-Tell them why you made it- to keep her warm after chemo.
-Let them know that you are praying for them or thinking good thoughts or               
    whatever
-Listen if they want to talk.  Leave if they are not in the mood.
-Be positive
-Ask if they need help, an errand or something you can do.  And then follow up a little later, don't say if you need something call me. 

Sometimes saying "I don't know what to say or how you must be feeling" is OK.  Just don't use a cliche.  Don't babble on to fill the silence.   

[EvilAlice]

I think you're doing everything right, and are a very goodhearted friend.

If you're concerned about the "implications" of a chemo cap, why not just a soft blanket of some sort?

As far as it being presumtious to do it for a child who doesn't speak to you- no.  This is for your co-worker.  Hopefully the child will get some pleasure out of it, but this is a visible and very personalized show of support for him and his family.

I hope everything goes well for all involved.

[Chartreuse]

She knows the child's pediatrician - ask if we can organize some kind of blood marrow screening at the shop or something.

Have either your boss or yourself contact the National Bone Marrow Registry (www.marrow.org) and set up a donor drive in your workplace.  They're exceptionally good about setting up drives for new potential donors.  All you'll pretty much have to provide is a location for the drive.  It was during one of those drives that I got on the registry, and less than 18 months after that, was found to be a match with a teenage boy (he and I are now friends and email back and forth fairly often).  Less than 24 months after getting onto the registry, I was a donor.  I'd do it again in a heartbeat, too.

It'd be extremely unlikely that anyone in your workplace would be a match for your coworker's little girl, but it's absolutely worth a shot.  Even if nobody was a match with her, there are tons of other people who need donors.  The chances of two unrelated people having a matching HLA profile are not good at all.  Who knows?  Somebody in your workplace may save the life of somebody completely unrelated to anyone in the office?  Or nobody may be a match at all.  It's a complete genetic crapshoot.

If you have any further questions at all about the process, or the like, I'd be happy to talk in private messages about the experience. 

Also, I definitely recommend hitting the links on the following site:  http://www.marrow.org/DONOR/index.html

[drzim]

Just FYI--retinoblastoma is a cancer of the eye, and it cannot treated by a bone marrow transplant.

Laser/local radiation and surgery are the most common treatments.

[Sirius]

Have either your boss or yourself contact the National Bone Marrow Registry (www.marrow.org) and set up a donor drive in your workplace.  They're exceptionally good about setting up drives for new potential donors.  All you'll pretty much have to provide is a location for the drive.  It was during one of those drives that I got on the registry, and less than 18 months after that, was found to be a match with a teenage boy (he and I are now friends and email back and forth fairly often).  Less than 24 months after getting onto the registry, I was a donor.  I'd do it again in a heartbeat, too.

It'd be extremely unlikely that anyone in your workplace would be a match for your coworker's little girl, but it's absolutely worth a shot.  Even if nobody was a match with her, there are tons of other people who need donors.  The chances of two unrelated people having a matching HLA profile are not good at all.  Who knows?  Somebody in your workplace may save the life of somebody completely unrelated to anyone in the office?  Or nobody may be a match at all.  It's a complete genetic crapshoot.

I was tested when there was a possibility my older sis might need a bone marrow transplant when she was being treated for non-Hodgkin's lymphoma.  Fortunately, she ended up not needing a donor transplant; her own marrow cleared, so it could be used.  Also fortunately - we found out that my younger sister was a compatible donor for her, and she was willing to donate if my older sis needed it.  Older sis has been find for years, by the way.  After all this, the hospital where I worked had a "testing fair" where people who were willing to be put on the bone marrow registry were tested.  I was tested and put on the registry.