the "bead" goes on......

Well, the good feelings that came along with the remission diagnosis was pretty short lived. Nevan is again earning his bravery beads at a fast and steady rate.

Since he was admitted for his high dose methotrexate, Nevan has gone down hill. Today he sits very still in his bed while on a steady morphine drip for comfort.  Nevan's fever keeps coming back with hardly a break with the meds. His heart rate is very high and sometimes spiking close to 200bpm. His little body is trying to fight so many things right now.  Nevan's lips are swollen, kankered and bleeding, his throat (although they can't see it) they suspect is the same. He has a rash covering his whole body and his scalp and chest are very itchy. His armpit is sore with a possible blood clot and his skin is so sensitive that it is peeling away with his bandages.

With about 5 different meds coursing through him at any one time to try and combat these new developments and nurses and drs constantly checking on him doing different tests.... Nevan is getting pretty fed up.  He says he is not mad or sad, just tired of being sick. I have to agree... I am tired of him being sick.  When Nevan was first diagnosed, he was feeling pretty good.... Technically much sicker than he is now, but he wasn't in as much pain. Craig and I were so happy to see him feeling fairly well, but devastated at the diagnosis.  Now the tables have turned 180 degrees. We are elated by the result of remission but devastated having to see him this way... In some ways it is harder than the first few days.

Although he doesn't smile anymore and he hasn't laughed in weeks, he is still in there and lets us know often. Even though he can't really eat... The request for noodles are still coming in! He also tricked me into thinking he has to go pee again and he gets mad at the TV when he can't get by a certain spot on his video game.... Definitely a trait passed down from daddy!

Craig and I are keeping our minds occupied with various fundraisers that are quickly coming together. We have a couple of larger ones coming up.

1. A family fun day in cambridge on Sept 29th. Complete with...
BBQ
Bouncy Castle
Face Painting
Rummage sale
Bake Sale
And much more
We also have many awesome prizes up for raffle

2. A Jack and Jill type of event on Oct 26th in Guelph
This one will be more for the adults.... In the evening with lots of games and raffle prizes as well. We may even make it a Halloween shin dig!

3. Also on the 29th Jessica from Live The Moment photography is holding mini photo sessions. She is donating the proceeds to Nevan. She is an amazing photographer and if you are looking for fall pictures or Christmas gifts, let her know.  All details will be posted in a separate post soon. Details are currently posted on my Facebook page however... Anita Emrith-Langlois.

These are all the public events we have on the go so far. Many are pulling together to help us privately as well and we are so grateful! Full details about the above events will be posted very soon once all is finalized.

Cute story of the Day
I started coughing like crazy after taking a sip of my coffee...
Nevan "Mommy what's wrong?!"
Me: "I'm OK Nevan, I just swallowed down the wrong tube"
Nevan "Oh.... .... I always swallow down the right tube.... I'll show you how later"
Thanks Nevan :)