Another week down on this journey. I can't believe we are nearing the end of 2012. This year has been a roller coaster for sure, but I try to look at the good and not the bad of everything that has happened to us. This year we had a home invasion, as I spoke of in an earlier post..... That horrible monster, aka Cancer, picked MY innocent child to attack and turn his four year old world, my world and everyone around us upside down. I still ponder Why.... everyday & I think I will continue to ask that question as well as worry everyday. On a positive note, I have learned so much about myself and my son in the majority of 2012. I have learned how special he is, how strong he is and how much of an inspiration he has been thus far in his journey for so many people, including myself. I have learned so many life lessons, realized my own strength and met so many "friends I wish I never met" along the way that are fighting with their children in a similar journey. I've found my voice to be an advocate for these kids and plan on fighting for each of them till none of them have to suffer. I've found out there is so many generous and thoughtful people in my life, some which I've just met and some that I have met many years ago. So as much as 2012 has really sucked, it has been a year of major learning & growth.
This week Caleb will find out counts and begin long term maintenance, as long as his counts are okay to begin the chemo. Though this has been a phase I personally was longing for about 10 months ago, I've been educated, researched on my own and met many parents in groups along the way and now realize this phase isn't such a 'walk in the park' as it seemed so many months ago. Children still have counts that fluctuate and systems that are immune suppressed. They are still so vulnerable to infection. Their lungs are so fragile. Mother's that I'm personally friends with online have children in ICU right now because their child caught a common cold, which turned into pneumonia and they need ventilators to breath. Children still need transfusions in this phase and fevers are still watched as he still will have his port in his chest. Even though his spinals and IV chemo will be less, he will some days be taking up to ten pills and be on steroid pulses every fourth week. Nothing about this journey is easy.
I have been a mess not knowing his counts since the 14th of December. I assume it will only get worse when I don't know counts all the time anymore. Even today I was researching his oral chemo and there is so much they look for at each lab draw to determine his dosages. Each lab draw is so nerve racking and now waiting weeks.... I don't know how some of these Mom's do it, but like this became a new normal for us - so will that. Overall though, Caleb has been doing really well. He is eating so well - and actually eating meat again. He hasn't had meat since he was a baby. He just wanted nothing to do with it. Though I don't know how much chicken nuggets is a healthy meat - I'm just happy he is trying it and eating it again. It's been years! And he's been in such good spirits!
He had a great Christmas, too! He had a great Christmas Eve with his cousins. Playing all night and ripping into his pile of gifts! And Santa was really good to him this year! BIG THANK YOU to Debbie Turner and the Cancer Center and all their sponsors of Apopka for helping me give Caleb BIG smiles on Christmas Day! And Caleb got a brand new bike, as he had out grown his toddler bike - his face was priceless when he first saw it! :)
This week Caleb will find out counts and begin long term maintenance, as long as his counts are okay to begin the chemo. Though this has been a phase I personally was longing for about 10 months ago, I've been educated, researched on my own and met many parents in groups along the way and now realize this phase isn't such a 'walk in the park' as it seemed so many months ago. Children still have counts that fluctuate and systems that are immune suppressed. They are still so vulnerable to infection. Their lungs are so fragile. Mother's that I'm personally friends with online have children in ICU right now because their child caught a common cold, which turned into pneumonia and they need ventilators to breath. Children still need transfusions in this phase and fevers are still watched as he still will have his port in his chest. Even though his spinals and IV chemo will be less, he will some days be taking up to ten pills and be on steroid pulses every fourth week. Nothing about this journey is easy.
I have been a mess not knowing his counts since the 14th of December. I assume it will only get worse when I don't know counts all the time anymore. Even today I was researching his oral chemo and there is so much they look for at each lab draw to determine his dosages. Each lab draw is so nerve racking and now waiting weeks.... I don't know how some of these Mom's do it, but like this became a new normal for us - so will that. Overall though, Caleb has been doing really well. He is eating so well - and actually eating meat again. He hasn't had meat since he was a baby. He just wanted nothing to do with it. Though I don't know how much chicken nuggets is a healthy meat - I'm just happy he is trying it and eating it again. It's been years! And he's been in such good spirits!
He had a great Christmas, too! He had a great Christmas Eve with his cousins. Playing all night and ripping into his pile of gifts! And Santa was really good to him this year! BIG THANK YOU to Debbie Turner and the Cancer Center and all their sponsors of Apopka for helping me give Caleb BIG smiles on Christmas Day! And Caleb got a brand new bike, as he had out grown his toddler bike - his face was priceless when he first saw it! :)
Thank You all for continuing to pray for my little boy & follow his journey. It means so much to Caleb and I.
Wishing each of you and your families a Happy and Healthy New Year. Enjoy each day and live with no regrets.
Love,
Caleb's Mama
Caleb and his cousins on Christmas Eve
Getting ready to open presents that night
Digging in!
Christmas Morning
Getting his new bike!
Loving his hot wheels track
Bowling on our day of fun!
The message behind “Unwritten” is exactly that…unwritten. Life is what you make of it and we should live our lives with our arms wide open so that we can get the most out of our journey. “Today is where your book begins the rest is still unwritten.” We all make our own destiny, while many have more obstacles than others; all dreams are attainable otherwise you wouldn’t be able to dream it. This song made me realize that you can carve your own path and sacrifices in order to make wishes come true. An unwritten life allows us to make changes to our dreams as we get older because our needs change. That’s the beauty of an unwritten life, you’re the author and have the power to do whatever you wish.
Yay for maintenance! Even though it may not be a walk in the park at least we hope it will be a little better than frontline treatment right? I cant believe you havent had counts since the 14th. I told them I wasnt coming back in last monday and they laughed at me and told me they couldnt handle not knowing her counts over the holidays. These overprotective doctors and NP's :)
ReplyDeleteI wish only the best for you both in 2013! I hope his maintenance goes well and Caleb continues in good health. I really wish I could give you both a big hug! As always I am amazed by the strength you both have. Your always in my prayers!
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