I spent my morning at the ICU today. This is possibly a slightly controversial blog - but it's The Real Story After The Fight. It's the reality of what we struggle with as parents in the cancer world. Every time I walk onto that second floor it all flashes before me. 6 crazy months I never want to repeat.
Last week I was called by a fellow neuroblastoma family while I was in Michigan. We texted back and forth and being a doer I said "How can I help? What can I do?!" They said they just needed emotional support. So I got a sitter this morning and went to the ICU to visit Johnny. Johnny was diagnosed with stage 1 neuroblastoma in November at 11 months old and since then has moved to a stage 4. Why? After 6 rounds of chemo and surgery, new tumors are forming in his legs, liver and neck. They tried a new chemo, a very high dose and sadly, his body can't handle it. He has been in the ICU for three weeks. The ICU doctors say there is nothing else medically they can do. He has three tubes in him draining, but the fluid is building too quickly and the oncologist told them that most likely the fluid will push on his heart and arteries, he will get tired and he will have cardiac arrest and... well, I can't say the words for what comes after that.
Here I am before this family... before Johnny and I'm helpless. There is nothing for me to do but listen and tell them I have seen miracles. The doctors have not put Johnny on life support as they fear it will prolong his pain. Johnny is now 16 months old. I will do all I can to help that family emotionally. I will.
I need to process this a little before I talk more about it. With his parents' permission I am allowed to post these pictures of before and now. You can find his page at www.facebook.com/johnnysfight
if you'd like to support this family.
I need to work on compartmentalizing. It's a skill. I am no use to anyone if I break down in front of Johnny's family or come home depressed to my husband and other children. What use am I to Cannon, who fought so hard to live, if I'm emotionally spent and having nothing for my babies? All of you know that Oscar's passing broke my heart into a billion pieces and I realized then that I wasn't sure I could ever get that close to another child with cancer, at least not for a long time. Not if I was going to be a mother to my kids, a wife to my husband and all the while run a foundation to raise money for research. But it's nearly impossible. I see Jasmine and she has a terminal cancer at 6. Now I see Johnny, 16 months old, told his body is failing and tired. How do I compartmentalize? The sad truth is, with practice it may happen and there seems to be no lack of kids being diagnosed. Last month alone at Arnold Palmer 16 new kids were diagnosed. 16 new kids in our area alone!!!
It's taking our kids and grandkids and I can't sit here and do nothing. But again I'm reminded that charity begins at home. I am a wife and mother first and then an advocate for children and Founder of Cannonball Kids' cancer. I must be sure to never get that twisted. I know my personality - I'm an all-or-nothing, go-big-or-go-home type of girl so I must remind myself of this daily. If I lose my marriage and my kids and become obsessed then I am no use to anyone.
Last night as I was texting Johnny's dad about coming at 8am Sunday morning to visit. He wrote me back and said, "Johnny may not be here in the morning." In that instant I was canceling my plans that had been made 3 weeks ago and going straight to the ICU. I was thinking about how could I tell my daughter I couldn't go take senior prom photographs. But I checked myself... well, myself and my mentor. I made a commitment to those women to meet for dinner and I will follow through with my commitment. I needed that time with my girlfriends. Michigan had been tough on Cannon and me and I needed some down time. My grandparents left yesterday and my husband and I haven't seen each other in a week as he is traveling for work.
I made a commitment to my daughter. She has had her mum gone just enough for a lifetime and this was senior prom... how could I not be there? So I had to check myself. Where are my priorities? My family must be number one. They have been second fiddle to Cannon for two years now. I owe them my time. Not only owe but they deserve it!! My twins had no birthday as I was gone with Cannon so their birthday will be celebrated next week when their dad is home. The list is endless.
So I went to prom photographs.
I went to dinner.
And then I went to ICU.
It's not easy to do that - but it's right! And it's necessary. But it sure takes practice.
Yesterday our Olivia, Cannon's big sister, had her senior prom. It literally seems like last year we were at her graduation from middle school. I am so not ready to even discuss her leaving for college and leaving me with three littles, a hubby and a male dog!!! Help me.
Can I just take a moment to brag on her? Olivia has had a challenging few years. She basically raised herself from 14-16.5 years old. It pains me to say that but sadly it's our reality. We were away a lot and made choices that caused us to be different states. I don't regret those choices and I believe in my heart that's why our son is here today. That said, it doesn't make those choices any easier, that's for sure. The guilt riddles her father and me. But Olivia is turning into a beautiful woman and Alabama has earned a beautiful girl, inside and out.
I did ask my husband if we could move there while Olivia was in the room. I'm not sure Olivia wants that but I would move there tomorrow if she didn't think I was stalking her. Am I? Stalking her? I mean it's cool if I am, but...
It's been a crazy week... an emotional one for a lot of reasons. I'm bone tired if I'm really honest. I'm ready for my anniversary trip with my hubby. We have saved hard for over a year for a special trip - I have a mason jar full of cash to prove it. ;) It's our 5 year wedding anniversary and we will go to where my hubby proposed in San Francisco and then go to Lake Tahoe. Mumma-Bear is ready to nourish her marriage.
It's Sunday - still my favorite day of the week. The house smells amazing with food and my hubby comes home tonight. My lush bath bomb awaits me when the kids are in bed. Enjoy your Sunday.
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Written by Mumma-Bear
Cannonball Kids' cancer
Thankful For The Fight
347 Days No Evidence of Disease
No Relapse Ever