Donate your "Play"-telets

Sunday, February 17, 2013

From October 2010 - June 2011 BC (before cancer), Ari had a class or activity every day of the week.  There was gym class, music class, Aquarium class, playgroup, and more.  I relied on these activities for his fun and learning and socialization.  Plus, we had memberships to every museum in the city and we visited them quite often.

Since June, Ari hasn't been able to go to any of these classes or crowded germy spaces.  But this past Friday, the stars aligned... Ari was feeling good and had high counts and so we made a guest appearance at his old music class.  And he had a blast!

It was wonderful to see him singing and dancing and banging on the drums.  But every time I heard a kid cough or a mom sniffle, I wanted to run out of the room as fast as possible.  It was the motivation I needed to (finally) start a playgroup for kids with cancer or compromised immune systems.

That's right, we'll be putting the "play" in platelet this Spring 2013.

And I need your help.  Would you be willing to donate your time, energy, skills, and fun for an hour?  Or, do you know someone who would want to volunteer?

I'm looking for volunteers who would be willing to lead a 45 minute (or longer) activity with a small group of kids (ages 1-5). You can sign up once or you can sign up on an ongoing basis. I will offer 2 days a week for playgroup (Mondays and Fridays) but will only hold it if there is a volunteer to lead an activity and if enough kids sign-up. Kids will be able to sign up the week before (they will not need to sign up for the "class" so there will be an ever-changing roster of participants based on how kids are feeling and where they are in treatment.)

Volunteers can lead activities like arts and crafts, music, singing, drumming, story time, yoga, gym, puppet shows, clowns, dancing, cooking/baking, etc etc.  An organized activity would be a great distraction for these kids and their families. OR, if you have a clean environment or outdoor location that the group could visit, that would work as well. (Field trip!)

In the beginning, we will hold playgroup in my home (either in the basement which is a big open space or the backyard or the sports field nearby.)  

This is the link to sign up.  Or, feel free to cut and paste and send to your friends who may be interested in volunteering.

Please let me know if you have any questions or suggestions.

Thanks in advance!!



Tuesday, February 12, 2013

When Ari lost his hair, I envisioned the looks of sadness and pity that strangers would give me.  I thought they'd stare at my little boy and wonder what was wrong.  I even figured a kid or two would ask him why he didn't have hair. 

And I was right.

To be honest, I can't blame people.  It is sad.

But most days, Ari feels good.  He plays and sings and laughs and acts like a healthy normal little boy.  But his hair, or lack thereof, makes it hard for me to pretend he's just like everyone else.  When he's wearing a hat, nobody pays attention to us.  When the hat comes off, it's, well, a pity party.  I try to ignore them, but it seems that time doesn't make it any easier when I see the sad eyes and sorry looks.  I know it's silly and I know I should focus on the fact that he's bravely fighting cancer and that his baldness is a source of pride for us that he's out of the hospital and in remission.  But whatever.  I want his hair to grow back.

The docs said it wouldn't happen for at least 6 more months.  So I don't want to jinx it, but, Ari looks like day 3 of a watered chia pet.  He has sprouted!  All over his smooth round head are tiny little blond hairs.  So light, they are barely visible, but up close or in the sunlight it's clear his hair is growing out of every little follicle on his scalp.  I'm giddy.  (Look closely...)

For all I know, it will fall out again next week.  Or, maybe, it will continue to grow, and one day soon his head will look a little like my legs these days.  But blonder. (Sorry Matt.)

Either way, this new growth, which the oncologists said wasn't yet possible, is exactly what the doctor ordered.  I needed a reminder that things would one day go back to normal. 

And the tiny fuzzy hairs did it for me.  Let's hope this is perm-anent.

We are at the tail end of a steroid course and the last few weeks have been pretty tough.  He's been slow to recover from the chemo which has increased the number of clinic visits and visiting nurse appointments.  Luckily, when he spiked a fever last week and ended up in the ER, his counts were high enough not to be admitted, but it was another reminder of how not-so-easy this process can be.  Ari is about 35% of the way through his two years of treatment.  It's been the longest 8 months of my life.  Yet, I can't believe it's already been 8 months!  We still have another 16 months (with or without hair) and then, fingers crossed, Ari will be chemo-free for the rest of his very long life.

His foods of choice this steroid week?  String cheese and thin white crackers (the expensive kind from the gourmet cheese display.  Saltines wouldn't do.)  He has his final dose of 'roids tonight and he is about to finish pack #4 of Frigo cheese sticks.  (Thank goodness he's not lactose intolerant like some other members of his immediate family.)

I'm going to try to blog more often.  I feel guilty that I don't write about sweet little Alison (the easiest baby in the world!) or about Ari's hilarious antics.  But since both kids are napping, I think I may try to close my eyes for a few minutes.  Ok, you're right.  I'm going to watch Top Chef.  Or Kim and Kourtney...


The Perfect Storm

Thursday, February 7, 2013

Here's the latest news report.

All week a storm has been brewing.

Labs and check-up at clinic Monday. (Ari)
Chemo Tuesday. (Ari)
High fever/ER trip Tuesday night. (Ari)
Steroid course Wednesday. (Ari)
Labs and check-up at clinic Thursday. (Ari)
Pediatrician appointment with 3 shots Thursday. (Alison)
Fever and projectile vomiting from reaction to shots Thursday night. (Alison)
Steroids continue. (Ari)
Lumbar puncture under anesthesia with intrathecal chemo scheduled for 9am Friday. (Ari)
Steroids continue for 6 more days. (Ari.)
24 inches of snow. (Nemo.) 

I'm pretty sure the forecast is accurate.  This is going to be a nightmare.


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