Michigan Day 2: We Need Prayers

Please share - we could use prayers tomorrow. 

So I confess I am now officially the mother who bribes her child (note I reference "child", not children) with toys to make myself feel better. Yip, I confess. Check out the picture of Cannon with his new clock toy. Despite the fact Cannon doesn't talk he knows his numbers, shapes, alphabet and colors. If I ask him where the "P" is he points to it or to give me a yellow triangle he can! The toy store at Helen DeVos is without a doubt the best toy store of any hospital I have ever seen and I've been to many. 

Problem number one: Cannon thinks the toy store is a collection of his toys. Problem number two: Cannon has been playing on the floor with the cars and may or may not have been the primary cause of a lady almost falling to her bum and giving me some not so great stares and comments. My Scottish smile didn't charm her for some reason... maybe it doesn't work in Michigan. ;) 

Cannon did really well today. He has been really pale and has many bruises. I will interested to see if his blood is okay. Today when we drew it, it was a really weird color, not its bright red color at all. 

Some of you may recall "Oscar". Cannon met Oscar in August when we came here last time. Oscar has beaten brain cancer and stomach cancer and is only 4. Oscar was the first kid I ever saw Cannon play with. Cannon and Oscar's sister were smitten on each other: she is 3. Amanda, his mother, and I have communicated almost weekly since I left Michigan. In fact, Oscar called me to tell me he was cancer-free just last month. Sadly, Oscar's eye is saggy and his head hurts - signs of possible relapse. Today we bumped into them and boy oh boy did Cannon smile. Look at the image of Oscar in his hospital bed. Cannon was trying to find him under the covers. It was so cute. I prayed for Oscar on my knees today! His mumma bear is a wreck. This world we entered and many of which many have come along for the ride is so hard. Words cannot describe the sadness when I saw Oscar in hospital today! He beat cancer twice. Leave him alone cancer - just leave him alone. Oscar told Cannon "I miss you". Cannon may not say words but he knows and feels his love right back. 

Tonight from 12 am until tomorrow after scans around 4 pm Cannon may not eat or drink, although he may have clear fluids until 9 am. Tomorrow I will take urine to the hospital and then take Cannon to his scans at noon. I hate starving him. Today he made me so happy, though: he drank a green smoothie. I don't know why that makes me so so happy but it does.

Cannon is loving our room which is attached to the hospital. It's like a Ronald McDonald House but it's called the Renucci House. It's amazing. Our room has a bay window and Cannon plays with his trucks and trains at the window while watching the buses at the bus stop below us. It's amazing to me. Only in the last few months has Cannon started noticing everything. As we walk (who needs a stroller, he is 3 now, lol) around the hospital he points to words on the wall and numbers and circles on the grounds and it's like "Who is this cool kid?" You want to talk progress? Come on over here. Cannon thinks he is on vacation with his mum it's adorable.

Meanwhile I am missing my daughter's volleyball game tonight and the twins' 18 month check up. My husband (thank God for him) is working all day, taking kids to doctors appts and doing dinner, bath and bed himself. The hardest working man I know - literally! 

Today I met with the charitable foundation to see what trials they have going on and to see if this could be a spot for our first $100k check to be given. I have been to many hospitals and this hospital is right up there! Cannon loves it here despite the lack of train set that we so love at APH. He loves the toy store, the bridges, the 50 foot bubble wall. He really thinks it's an adventure park. The foundation will be sending our Board info on three of the trials related to cancer that I am interested in and we will go from there. We have our next strategy meeting with our DC lobbyists on Monday. Monday I have my CT scan for my little check up from that crazy cancer scare I had a few months ago. Prayers all is well... I don't have time to be sick!!! What mother does? Am I right? 

I ask for specific prayers that tomorrow Cannon isn't too mad that he can't eat and above that that scans are clear as day!!!! That there are no new spots, that Cannon's blood is healthy and his urine levels down! Tomorrow is a huge day. I realize that for some it's hard to imagine - I get that. The reality is that the results are so huge that it would change Cannon and our whole life. If your child relapses with neuroblastoma the truth is there is 99 percent chance of further relapse. Some doctors say there is no cure and it's a matter of time. Some say there is hope! I choose hope as I have too many kids I know who have relapsed, that said it would still change our lives. I would be getting on a plane to Sloan or CHOP and would be on high dose high risk chemo by the end of the week and who knows what's next. Sadly neuroblastoma treatment is so so aggressive that all that is left is trials! Cannon, like other NB kids has had chemo, radiation, transplant, antibody therapy, surgery - there is nothing left!!! Please pray hard for clear scans.

I know I don't do this often but if I could ask for a prayer for myself - that I remain strong no matter the outcome, that I remain happy to show Cannon it's all okay and that I  be everything he could ever need in a mother. 

I appreciate all the prayers and love sent our way!! So much gratitude in my heart for that. 

Written by Mumma-Bear

Cannonball Kids' cancer

www.cannonballkidscancer.org

Thankful For The Fight

Pray Hard

165 Days No Evidence of Disease

No Relapse Ever 

 

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