Unfortunately research for childhood cancer, particularly neuroblastoma, is greatly under-funded. Big organizations like the Canadian Cancer Society and big “adult” cancers get all the bucks. So it’s up to organizations like The James Fund to raise money to support research that truly helps save the lives of kids with NB (which has one of the WORST survival rates of childhood cancer).
 
So come join us! It’s going to be a ton of fun, with great food, a magician, a dance party and more. Plus The Drake Hotel has been PHENOMINAL – they’ve been so generous and so helpful. Thanks to them this is guaranteed to be a great party!

For more details and to purchase tickets please visit the event website: www.groovygala.ca

If you’re unable to make it but would like to support this great cause we are also excepting donations. Click here to DONATE NOW

Thanks and hope to see you there!

That’s the update. Yeah, updates here will be a bit less frequent (god willing I won’t need to post too often). But thanks for checking in anyway!

We…are…thrilled!!!

And we are breathing a little easier once again.

THANK YOU everyone for your calls to the universe – it continues to work and for that we are ever grateful.  XOXOXOX!!!!!

Today we had the MIBG scan. It’s a long one, about an hour and 20 minutes and requires the patient to lie very still.   The last 20 minutes is one picture, and if you stop in the middle you have to start over again – take notes, this is crucial to the story I’m about to tell.  So before we go to the room I take Reese for a final pee.  Then I said to the nurse and the technician, let’s just go through, no breaks, because once Reese is settled in she’s good.  If you take her out in the middle and she gets a taste of freedom she won’t want to go back in.  Okay, cool.  Reese was doing SO WELL.  Totally chill, happy, relaxed for the 1st hour.  Only 20 minutes to go.  Those golden minutes where you can’t stop the images.  Remember I said to the tech that we will NOT take a break.  So before we started the continuous image stage he pipes up and says let’s give Reese a pee break.  NOOOOOOOOOO!!!!!  I was all, really dude?  Did you have to say that?  Reese of course was super excited over this prospect.  So off to the bathroom we went where of course Reese did not need to pee.  Flash forward 2 minutes and Reese is strapped back in and the machine is fired up.  While it was whirring away Reese was formulating a plan on how to get the hell out of the machine again.  She was very quiet, very calm.  The kid was scheming.  So with only 9 minutes left she pipes up in her little voice…I have to poo.  We were all REALLY?  NOW?  Can you hold it for 9 minutes?  Please?  Let’s just finish?  I’m begging and pleading because I didn’t want to start this phase over again.  But Reese was getting increasingly agitated.  And since she’s only been potty trained for 6 months I’m not quite sure of her limit.  So the machine was stopped and Reese and I trotted off to the bathroom again.  10 seconds into it Reese gets a big grin in her face and says “heeheehee, there’s no poops mommy.”  WTF?!?!  ARE…YOU…SERIOUS?!?!?!  You have got to be shittin’ me sister!   So we had a little chat about telling lies / stories.  We went back in and I had her tell the nurse and technician that she was telling a story and that she was sorry.  She did this with a “I’m pretty damn proud of myself for screwing with the 3 of you” smile on her cute little face.  GAWD!  So we started again and it ended without another incident.   As mad as I was I was pretty impressed with her craftiness.  Now I know I need to intensify my BS radar.!

We find out the results on Monday – NED NED NED!!!!

Yes, it’s that time again; the next set of 3 month scans.  After each set of scans you hit a nice lull for 2.75 months.  Then the week before nerves become frayed again.  I call it the pilot light of fear:  it’s always there, quietly burning in the background and every so often if flares up.  Like now.  Sigh.  But the mantra in my head every time that little shit pipes up is IbelieveIbelieveIbelieveIbelieve.

Reese has been doing so well!  She’s growing taller.  Not sure where she’s topping out, we’ll find out on Thursday when we’re at clinic for a check up, but her clothes are definitely shorter.   Her energy is great. She’s running, hopping, jumping, doing flying belly flops on the floor without thinking first to put a pillow down, you know, kid stuff (the “ooof” sound she breathes out and the stunned look on her face is priceless).  6 months ago she had to hold my hand to step off even the lowest of curbs and now she takes a flying leap off them.  And she takes stairs without holding on to the railing.  I think it’s a combo of stronger muscles as well as a significant increase in her confidence.  We had another osteopath appointment last Friday, just for her tri-annual tune up and she liked what she was seeing in terms of Reese’s development.  Her hips were a bit out of line, one being slightly higher than the other.  And that’s clearly from Reese favouring her left leg when she’s climbing and taking stairs.  But with a small adjustment and extra work on her right leg we’ll get it all fixed up.  Reese is having a ball on play dates, her cooking and art classes, going to the Science Centre, the library and doing just fun kid stuff.  It’s all good!

I’ll update how the clinic visit and scans go at the end of this week and then of course the results on Monday.  Eeeeek.  Down flame, IbeliveIbelieveIbelieve, down!  In the meantime if you wouldn’t mind shouting out the occasional NED!!! to the universe I’d really appreciate it.  For example, at the drive through, when the person hands you your little brown bag holler NED! and then hand them your $3.99.  Or when a telemarketer calls yell NED! before slamming down the phone.  Or if your husband asks you what’s for dinner honey instead of what I can do to help make dinner honey scream NED! in his face.  You know, that sort of thing!  Thanks!

The highlight of course was meeting the Disney Princesses; from Cinderella to Snow White to Tiana and Belle. While they were pretty, perfect and a bit plasticy (lordy, doesn’t the smile hurt after a while?) they were as sweet as they are in the movies. As a princess I would have been fired from Disney: makeup 2 inches thick, stuffed in a bodice, surrounded by loud needy children would have broken me by day 3. Don’t know how they do it.

From a tea party with Alice, to playing on the beach, to (almost) petting sting rays, to splashing in the pool, to dancing on stage with the band Reese did it all. And on top of all that the crew were fab, Reese got to eat what ever she wanted including ice cream everyday – enough to give mama a heart attack – and mac n’ cheese 2 times a day for 4 days straight. I’m worried she’s seen the light and now thinks all my spelt, kamut, non-sugar, organic, veggie diet just sucks.

Sure there were things like the cancelled flight on the way down, sprinting through the Houston (don’t ask) airport to catch the last flight back to Toronto, hitting really (I mean really) rough seas, the ridiculously crowded pools, not going to Disney’s private island because of 2 medical emergencies (not Reese). But I can honestly say NONE of that mattered because everything else was beyond amazing.

And none of this would have happened if it wasn’t for the folks at the Children’s Wish Foundation. Every single person was so helpful, kind and professional. I swear they were just as excited about this cruise as we were!

Here’s a video and pics are updated (those who saw the pics on Facebook – they are the same…)

http://vimeo.com/20785743

Love to all!

Ah yes, my point.  We had a clinic appointment today. Thursdays are transplant-kid days. So I spoke with Sick Kids yesterday about Reese’s cold / cough. I don’t know if Reese is contagious (likely not given how long since she first got her cold) but I would just die if she got an already sick child even sicker. So I didn’t want to show up at clinic and have Reese cough all over everyone. Plus I wasn’t sure what they wanted to do with respect to Reese’s CT and MIBG scans. And yet again, Sick Kids was AMAZING in how they handled this. Here’s how it went down today: we went to the CT scan area first so they could listen to Reese’s lungs. Thankfully her lungs are 100% clear. But with everything just sitting in her sinuses they cannot sedate her for the scans. Fine. I hate sedating her and I figured she could get through the scans without anyway. Then we went up to clinic where they immediately put us in a room to keep Reese away from the other kids (or more like to keep the other kids away from Reese). As much as I’d love to not have to go to Sick Kids, it was actually really great to see the folks we’ve gotten to know throughout all this. From Leonard the Orderly (is that the PC term?) to Mary the Dietician to Carla who books all of Reese’s appointments to Denise our awesome nurse practitioner – it was like seeing old friends again! Reese got lots of attention and unfortunately she returned their kindness by coughing all over them. Sigh…

Denise did a full physical and thought Reese looked great. She’s gained tons of weight and is up 1.5 inches. Then we went to the IV room for Reese to get an IV line inserted in her hand as they need to draw blood and Reese needed an injection for the MIBG (since Reese’s line was removed this is how things are going to work). And Reese was great! Yeah, she didn’t like the needle going in at all. But she watched it go in, cried for a couple minutes, then chilled out.

Then back down to CT we went. There is an amazing nurse there, Angela, who is one of the kindest, warmest, most helpful people in that entire building. And she came up with the BEST idea. During the CT scan they need to inject a contrast. This would mean Reese would need to endure another poke tomorrow before her scan. So Angela said, look, Reese already has the IV line in, let’s see if we can get her into a CT scan today so that she doesn’t need another poke tomorrow. And she made it happen, right then and there! So after clinic we went right into the CT scan room. And Reese completely freaked out. She’s quite scared of the “big machine.” But after a lot of talking and singing and playing Max and Ruby on the iPad I got Reese lying down on the table. She cried while moving in and out of the “big machine” but she pulled it off, managed to smile afterwards and I was the proudest mother on the planet at the time. Then off to Nuclear Medicine for the MIBG injection. Again another nasty experience but over quickly. Oh, here’s a tip I just have to pass on. I’ve been emailing a lovely mom in Australia, Nicole, who’s daughter Amelia also has stage 4 neuroblastoma (just starting immunotherapy) and she gave me the BEST idea. As any NB parent knows, the Lugol’s solution kids need to take when they get the MIBG injection is the most horrifying tasting thing on this planet. When Reese first took it she threw up for 30 minutes. I was all eye rolls and pul-eeze, it couldn’t be that bad. Yeah, it’s that bad. I merely touched it to my tongue and my right knee shot up like I touched an electric fence. Okay, my reaction was just shy of that. But it tastes bad. Since then I’ve been mixing it with very concentrated, syrupy Kool-aid. And even then… So anyway, Nicole said what she does is buy empty gel capsules at the local heath food store and fill them with the solution. OH MY GOD!!! Now why didn’t I think of that!?!? All I can say is thank gawd the world doesn’t have a brain like mine otherwise we’d all still be waiting for lightening to start a fire. So I tried it and it worked like a charm. Thank you Nicole!

So back to today. After the injection we hightailed it to the toy store for two very well deserved presents (in addition to the princess tea set and dolly the CT scan team gave to Reese). It was a busy day, but one filled with warm, incredibly nice people and immense moments of pride.

Tomorrow we go back for the MIBG scan, and thankfully no pokes. Then we just spend the weekend hoping and praying that the scans come back with NED.