December 10, 2016 ~ Angel Wings
Our sweet, wonderful, amazing, incredible, spirited, precious boy grew his angel wings at 10:21am on 12/10/16. Thing is, he already was an angel on earth.[...]
Our sweet, wonderful, amazing, incredible, spirited, precious boy grew his angel wings at 10:21am on 12/10/16. Thing is, he already was an angel on earth.[...]
I know it's been a few weeks so figured I'd post an update with where we're at.
Cole's "event" was on Nov. 9th. We brought him home Wednesday, Nov. 16 and have been here since. He's been on the new chemo pill for 3 weeks now. After that first weekend Cole woke up and spoke, he wasn't able to speak anymore after that. At home he's done a good job trying to communicate, although very frustrating for him and it's been extremely difficult for him. Sometimes we can see he's visibly frustrated/upset, and probably scared, with tears in his eyes. He's been able to do a pretty good job with thumbs up/down with things and was making noises and reacting to things. Sometimes trying to smile as best as physically possible. Everything damn thing is a struggle for him. But he's so damn strong.[...]
Cole is stable.
We stayed in the PICU Wednesday night then moved to the HEMOC floor Thursday evening (our home-base floor if you will).[...]
This is all I'm posting for a while. I know you all understand as our lives have been shattered.
MD Anderson got back in the meantime and don't feel they have anything to offer. [...]
Brief update.
Cole was taken to the Ottawa ER via 911/ambulance yesterday and then transported to Children's Mercy (CMH) by CMH ambulance since they're a mobile ICU where he's in the PICU right now at CMH.[...]
So I needed to type the previous post to provide an update on Cole's current status and where he's at. I also needed to compartmentalize to get me through this post..[...]
After travel and a tiring weekend, Cole continued to sleep nonstop. He also appeared noticeably more pale than normal and just seemed more "off" than normal. After eating at me all morning on Monday I decided to text our Visiting Nurses nurse and see if she could come do his labs one day early instead of waiting until our normal Tuesday time. [...]
Cole had his two day chemo 10/19-20 which went well and he was able to come home that day 2 which was great. He then had one day treatment in clinic on 10/27. We knew with the nasty two-day chemo it would be a week'ish before the major side effects popped up so we wanted to enjoy every moment at home.[...]
Sharing our plan for this week..
We checked in to the hospital yesterday for the 2-day chemo that was initially scheduled for this week and more tests.[...]
Wanted to get a brief update on here as so many have sent well wishes for our brain MRI today and have been anxiously awaiting to hear.
At some point I'll post more because this is taking everything in me to type this but I'm just...going...[...]