here is the latest:
+++ G is good - "Nothing better than starting the day with good news! Chaser had a picture of his chest taken this morning in preparation for his G-Tube, everything is in the right place- this will definatley minimize and complications with the procedure. They are going to get it schedualed, and hopefully this will take place Monday or Tuesday. Chase and I had a great night. He rested all night, with one brief Neuro-Storm that lasted a couple of minutes. I expressed my concern with the Dr., that although it is good to see the Neuro-Storms much less frequent, and less intense, I feel that he may be on too much muscle relaxer to control these. He agreed, and we are going drop the dosage a little, to see if Chaser can be more alert, and still avoid having these storms. Mom and I can definately see and feel The Lord answering our prayers. We are both feeling a constant flow of energy and a calming, alomst clarity with the situation. Chaser just recieved a welcome home live concert from the musical thearpist. She played a few of his favorite songs from FUN, as well as a family favorite Hey, HO from the Lumineers. He had a breif, but exciting moment of alertness when mom came in this morning. With his big brown eyes open, and his hands and arms moving slowly- not in the manner they do during storms, he gave a sign that he is glad we are here, and that he has plenty of fight left in him. Our warrior now rests peacefully again, his vitals exellent, absorbing the feeds and nutrients that we have restarted, after pausing 3hrs prior to his G-Tube test. We look forward to seeing more good signs of his recovery, and pray for more small miracles to shine their light. God is good!"
+++ small room, big hopes - "It was a very positive day here at Children's. Chaser has been resting most of the day with a few sporadic, but meaningful, moments of alertness. He has had plenty of visitors today. And for a few of them, he opened his eyes and made his presence known. He seems to be reacting to touch in a more specific manner than previously. Which is definitely a step in the right direction. It has been a busy day here, with countless downloads from different specialists, and adjustments, introductions to the medication cocktail. We just met with one of the specialists from Gillett's to discuss their philosophy, techniques, and program.....Wow! We are confident that there is no better place for our Our Warrior to carry on his fight! His G-Tube will be scheduled to be inserted on tuesday, and barring no complications or infection, we will move over to Gillett's to begin the next chapter in Chasers recovery on thursday. His Neuro-Storms were nonexistent today, and although he remained in a peaceful state of rest the majority of the day, we can definately feel his inner spirit. We were moved from the PICU into med-serge floor because of his no longer critical condition. So besides going from the Penthouse in PICU, to the smallest room in the hospital, it has been a GREAT day!"
so i have been thinking all week about something that we could do for ava, tanner, and chase. last night i realized that we could do what we do best, send them fun mail! i checked in with lisa, chase's mom, and she thought the kids would really love it;) this will be a great way for all three kids to have some fun mail each week. chase is 4, ava is 7, and tanner is 9.
here is how the fun mail campaign will work:
+++ you will be assigned a specific week, and that week you send chase, ava, and tanner some fun mail. it can be anything you want to send them - a card, fun snacks for ava and tanner, some captain america mojo or books that can be read to chase...whatever you would like to send.
+++ let me know (leave a comment on the blog, email me, text me, facebook me, send smoke signals, etc.) that you want to be part of the fun campaign. i will assign you a week and will then give you their home address so that you can send the fun mail. i will send you a little reminder before your week;)
i am really excited to start this - i think that it will be a great way for some fun to arrive each week for the kids, and for things other than hospital bills to be in the mailbox. you all know that i love fun mail, and i think that it is a small gesture that can have a large impact.
i hope that you will join me, if anyone deserves fun mail, it is ava, tanner, and chase.
i also wanted to provide an update on jenn today. your good vibes definitely helped with some good results. she does not have to have any further biopsies or treatment at this time. awesome news! she has some other concerns that she is working through as side effects from her previous treatments. so keep the good vibes going her way. go jenn!
i had to stop at urgent care on my way home today (don't worry, nothing serious). i of course had to fill out the form and mark the "cancer" box. when the nurse was asking me questions she said "you marked yes to cancer?" i said "yes, i have stage iv melanoma." her eyes darted to me, she winced using just about every muscle in her face, her eyes darted to me again, and then she looked like she was so sad for me and simultaneously apologetic for having that reaction. her reaction pretty much messed up my night. it was just so jarring, that "oh wow, that is really not good" look. yep, i am pretty clear on that. but watching her reaction was like being slapped in the face with the reality of the severity of stage iv. not a great moment, i was happy to get the hell out of there.
i am going to be off the blog for a few days, barrett and i are finally going on the trip that we were supposed to have taken for our anniversary in february. when we had to cancel that due to my surgery, we decided we would make it happen before my next scans. we are off to vegas for a couple of days. if i hit the jackpot, i will send a quick blog update that just says "big winner";)
have a great weekend, embrace every minute of it. xoxo
Mary & I are in on the fun mail ...
ReplyDeleteksheehan@rccbi.com