The Tatham Family Blog

This line from Cinderella sums up perfectly the amazing experience we had on the Disney cruise: truly a dream come true. Reese was over the moon about meeting all the Disney characters. She lead the conga line with Donald Duck, busted a move (although Elaine Benes style) with Daisy and was one step away from full-on stalking Dale (Chip’s better half) thanks to her deep seeded love for him. She must have danced with him 5 different times and each time he remembered her and gave lots of lovin’ right back. Mickey and his his constant smiling, non-verbal, exaggerated body language, happy go lucky pals made Reese so happy! I cried twice…in public…from being overwhelmed with happiness.

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

Reese had her 3-month scans late last week. So I called Sick Kids at about 11 this morning, on the way back from a client meeting. I left a message with our nurse practitioner then drove home. Along the 401 I roller-coastered from a “pppffft, of course everything will be fine” to “oh dear god, what if everything isn’t fine.” And for the next couple hours I was nervous, shaking, on the verge of an aneurism, wanting my cell to ring and dreading the call. When my cell did ring I said hello and I heard “hiAmberitsDeniseeverythingisfine.” LOL! I guess over time Denise has figured out that when parents are waiting for test results the sound of a voice from Sick Kids causes the heart to plummet so might as well blurt it out as quickly as possible. Thank you! So yes. YES! Reese’s scans remain clear. There’s still that strange spot in Reese’s chest. But it’s unchanged and it’s still a UBO – an Unidentified Blob-like Object. Yippeee! I’ll take it. So now we can breath a little easier for the next 3 months. Thanks for everyone’s positive vibes, thoughts and prayers. It’s still working!

Reese has picked up a nasty cough. I’m talkin’ N-A-S-T-Y. Like you, not Reese, are the one gagging when she coughs. She’s now “that kid.” The one who I always wondered why the mom just didn’t keep home so that her germ infested kid wouldn’t infect my kid. The one whose mom I wanted to approach and be all quit spreadin’ the plague man, but rather who would be the recipient of my supreme passive aggressiveness – I would just sit back and glare at her and deeply sigh every time her damn kid started coughing up a lung.

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.