What a week......
I know some of you mumma and papa bears appreciate the craziness of a senior in high school (and that is crazy) and three under three. This week I have had that on my own. Did I mention the 160 pound dog? I am not complaining, trust me. I am just being informative. :) I can handle it... kind of. ;)
Michael left Wednesday at 8am and won't be home until late Sunday evening. Cannon and I leave Monday morning to go to Michigan for the week for scans and tests. We need to make sure his chemo is working and that he remains NED (no evidence of disease). I believe he is NED for life! No relapse ever!!!
Cannon really misses Michael when he is gone, more than the other kids. He looks for him around the house and truly just doesn't seem quite as happy. He is truly a daddy's boy and a man's man! He gravitates to men more than women. Of course I think he loves me too but I don't throw him on the bed like dad or make him laugh as much as his amazing dad. My heart is so happy when I see Michael and Cannon play! Cannon and all our kids are so blessed to have Michael - he is truly an incredible man and father! I am thankful for him everyday!!! We miss you Dad and can't wait until you're home.
Cannon's urine came back.
I apologize for not posting about it. I had to digest the news. They were not what we wanted. They have risen consistently since Cannon was NED. The oncologist said "He has scans this week so that's good, but I would be worried if they rise more and more." In essence, we don't want them to rise anymore. Rising urine levels can indicate growing tumors not visible on scans yet. Of course that's worst case scenario but also usually what doctors look for. The prayer I ask is that the scans are clear as day! That the scans show no evidence of disease and that our baby can go on and be a healthy little boy. While you're praying, a few talking words from Cannon would be lovely, too. ;) I ask a lot - I know! Some say demanding - I choose direct.
This week has been a tough one, Gray was at the ER last week and is now better however he so kindly passed it to Arran and now I think Cannon is suffering. Cannon has had borderline fever numbers all week. Today and yesterday he fell asleep just sitting on the sofa (he never does that) and he was up crying from 4am, too. I know he isn't feeling himself and I am choosing to believe that the kids are just passing around this congestion virus to each other. I feel so bad for Cannon. Some days I feel like the kid can't cut a break. I, of course, have given up the idea that I will ever sleep again. With young kids and a kid going to homecoming tonight (Lord help me), I am in need of some medication (joke) or a cigar. ;)
Cannon has had eating issues since treatment. It's important for me to remind myself how far he has come and that he is not on a feeding tube. The other day I was cleaning out his old med box and I found his old feeding wires. I remember sitting on top of him and using my legs to keep his arms down and using one hand to hold his head still and the other hand to thread the wire and tube down his nose into his stomach!! Horrific doesn't do it justice!!! However now, I often have to force feed him and then eventually he eats. It's horrific to say the least. One of the worst things cancer stole was a boy who loved his food! My heart aches for that but again, progress... not perfection. I am thankful for the fight! I remain that way!
I want to take a moment and say how proud I am of my stepdaughter Olivia, a senior in high school. She has had a rough few years. Essentially non-existent parents who traveled to save her brother's life. She had to wash her clothes for school, cook her meals, no one to share stories with and she still begged us to go on a mission trip with her school. This mission trip was very competitive to get on and only two girls from her year would be picked. It's an anonymous process and you write a paper to apply. Olivia wrote about the last few years and how she just wanted to help others and that her faith in God was restored!
My sweet Olivia and one of her besties Gray Malias were the only Senior girls accepted to go on a mission trip to the Dominican Republic. It's a huge deal!!!! There was lots of excitement in our house that day! I am very proud of these girls!!!!! Both girls will make a difference in this world! Caring and intelligent and totally gorgeous to boot!! Proud of you Olivia Rae Wiggins. I know she will kill me for sharing this but what's a step mum if she doesn't embarrass you? I have been in Olivia's life since she was 7 and we bonded automatically. Both of us are fun, outgoing and like to laugh! This week she sent me a text and said "Thank you for all you do for me, I appreciate you." Of course I texted back "Have you crashed your car?" ;) The point is sometimes mumma bears just need to hear the words and it made my whole week to hear that! I would and will do what I do without praise always, it isn't necessary but it sure warmed my heart. And no, she hadn't crashed her car. ;)
This week we had our first conference call with Venable. There were ten lawyers from their team on the call, another 15 lobbyists who will be assisting and our entire Board. It was more of a get-to-know-each-other meeting. The expertise on the team was truly overwhelming... from working with the Obama Administration to a former Congressman. What impressed me more than the credentials was that all ten of the team stayed on the call for 90 minutes and expressed their burning desire to change this area. One lawyer had worked to change funding for prostate cancer and well... he did!!! I know WE as a team can change this!! I just feel it in my bones!!! The Venable team is now strategizing based on all of the information we gave them. We have our next call in two weeks and in between that a call with the FDA. I have goosebumps all over as I type this. It takes a village and I think we have OUR village. This isn't for CKc. This is for the next kid diagnosed and to all the angels in heaven who were taken too soon. Team CKc is here to stay... this is only the beginning.
Some Halloween pictures (Kilts and Union Jacks). :) Last year we were in isolation in Philly and Cannon was very sick. Last night was very different! Cannon and the boys enjoyed it! Cannon is actually starting to do well around new people and enjoy it. It's all progress and it makes my heart happy!!!
Written by Mumma-Bear
Cannonball Kids' cancer
Thankful For The Fight
162 Days No Evidence of Disease
No Relapse Ever