I totally stole this saying from my 17 year old daughter so it must be cool, right?
As I type we are driving through snow in dowtown Philly to Michael's hearing in Reading,PA at the federal court and then to Pine Grove, PA to stay with Michael's mum and sister for two days before heading home to Orlando.
Michael and I were going today to see our friend Mose. Michael grew up with Mose as a mentor and father-like figure to him. Mose has been battling cancer for a long time. I don't ever recall a time when we have visited PA where we didn't visit Mose. I recall Mose used to tell Michael when we dated "If you let this girl get away you're crazy". Yesterday, late afternoon, sadly Mose went to heaven to be an angel. My heart hurts for him, his wife and kids and for my husband who truly just suffered a huge loss in his friend and mentor. Mose, his beautiful wife Sandy and his daughter Sheila have been huge advocates for CKc raising money and awareness. It hurts that we don't get to say our goodbyes. We missed him by less than a day.
:(( Please pray for Mose and his family during this grieving time. We will go to his wake tomorrow night and I am thankful I can be here with my husband for that.
No real update from Oscar. I spoke to his mum for an hour the other night. She truly has a heart of gold. Her heart is in so much pain and so is Oscar's. I wish I could share with you my conversation but I want to keep it between Amanda and myself. Safe to say it's horrific what Oscar is going through. The road to heaven for these kids is not peaceful!!!! It's not even close to peaceful. It's painful physically as the tumor suffocates his little body. The pain meds don't cover even close to the pain. Praying for a peaceful exit from this world doesn't seem right when I think of this baby boy. It just doesn't seem right! I continue instead to pray for a miracle... I've seen them, I know they exist. I ask with all my heart, please pray for a miracle for Oscar, for strength for Amanda and his father and his little sister who is three!
This morning I woke up and like I always do I said my prayers and then turned my phone on. The first message was from my twins' godmother Angela. Gray has been up the last two nights vomiting. Sigh... I have been through this since Thanksgiving with my boys. Just can't seem to get us ALL healthy - despite the green smoothie and vitamins they have daily. Poor Gray and poor Angela who is working full time, running her foundation Toys from Tyler (her son who is a 10 year NB survivor) and has two kids who are in sports.
The struggle is real...
I know all mums who travel know this struggle, not just the ones with kids with cancer. Being away when your kid is sick is painful to us mums.
I want to be all things all the time for everyone...
I want to help Olivia with her car that broke down and needs to be fixed.
I want to help Gray get better.
I want to help Angela with Toys from Tyler.
I want to support my husband with his grief of his friend.
I want to help my Cannon with the hearing issues and tests.
I want to be all things to everyone.
It's a mum thing.
Oh, and I am a control freak. There, I said it.
I also want to be there for Nickelle, Ava's mum. After reading my texts I went to my email and the first email was from Nickelle. Ava, a NB survivor, had a recent scan that showed a new spot and today they will travel to CHOP and Sloan. I wrote Nickelle an email based on the questions she asked but I WANT to do more. I want to do so much more.
I had Michael looks at flights to go see Oscar. I was going to fly up for a few days and do laundry for them, look after Sally, see Oscar, etc. I wanted to just be there - truly more than anything. Michael and I just can't afford it. Olivia's car will cost $1,700 to fix and it would cost $1,000 to go. My heart is with them even if I can't be. Caring for Cannon is not inexpensive: Michigan for a week, now CHOP, hearing aids coming up. Four kids is expensive - poor Michael will never retire. Michael and I will talk about my perhaps going to work next year. I have mentioned before that Michael and I do all CKc work from our own pockets but I am not sure how long we can sustain all we do. It looks like we will need to hire some help at CKc - a corporate fundraiser perhaps! I had my eye on one guy, he knows who is is, but another amazing foundation stole him. Yes, stole lol...
We have our Board meeting in January where we will reach out to our scientific advisors to see which clinical trial we will fund. Our first check is for $100k - it's not much but it's a start and I am proud of our Foundation. We are also hoping a first draft of legislation will be ready by January. We have our next strategy meeting on Monday with all our DC lobbyist team. I love those meetings, they make me feel like WE are making a difference and I do not doubt ever that CKc will! I am proud of our team!
Now to update on Cannonball. Sigh...
Well first, he is a rockstar!!!!
Second, yesterday was tough. Cannon wouldn't keep the headphones on - he is a stubborn little fella - I have no idea where in the world that comes from. ;)) We should have the full report for him next week. When I return to Orlando I will begin the process for hearing aids for him.
You know I wouldn't be honest if I didn't mention that every time Cannon missed sounds, which was over and over again, it felt like someone was standing in front of me and kicking me in the stomach over and over. He was smiling at me and so proud yet the sounds were going off and he couldn't hear a thing. It hurts. I know, I know... perspective. But it will just take me a minute to get there. Tomorrow, perhaps.
Cannon, you are MY hero!!!!!!!! I am so proud of you, but YOU should be so proud of yourself!!!
Written by Mumma-Bear
Cannonball Kids' cancer
Thankful For The Fight
203 Days No Evidence of Disease
No Relapse Ever