Another week of treatment behind us. This week has been a rough one mentally, emotionally and physically for Caleb and I. Clinic days drain us both. They completely drain me, Lord only knows what they do to him, really. Caleb and I went into clinic at 930 yesterday and he wasn't taken for his LP until 12:10 pm. By noon, he was cranky and starving. And I didn't blame him since he hadn't eaten or drank since 7pm the night prior. That was the longest he had to go without eating for sedation. He's been having pains in his legs and the doctor feels again it's from one of the chemos that has that effect. So I'm just treating him as needed with pain medication or morphine at home. Hoping it doesn't get as bad as it was two weeks prior.
He's getting as used to it as he can not having hair. At times I think he forgets. He still has strand on top of his head, but mostly gone. It's still falling out. I remind him everyday how handsome he is and how amazing his smile is. At times he follows that comment with "but I have no hair" or "my hair is falling all out." But I just repeat what I said to him again. It will click one day, it will. His class and friends have been well aware of the situation and knew this was coming so it wasn't much of a shock when he walked into class on Tuesday - even though it is a shock when you see. His class and friends have been so, so, so supportive and Caleb and I are so grateful for that. And I just have to hope that adults have the common sense gene not to mention his hair being gone because quite frankly, he doesn't like discussing it. BUT you'd be surprised, there are adults (yes, adults) that lack this gene and do just come out and say some pretty dumb things to a child going through this. All I can do is say a prayer for them, and continue to boost my sons' self esteem about the situation.
Caleb's ANC is very low again. He is at the point where he is VERY vulnerable for infection and to be able to fight it off. Will a common cold affect him and his treatment, no - but would it land us a few days in Arnold Palmer 4th floor Hotel, yes. With that being the case, I am choosing not to send him to school this week. I'm not pushing it if he's that vulnerable for infection and we will reassess on Thursday when he gets another CBC done. He gets shots all weekend and oral chemo till Wednesday night. I'm hoping for a rise in the ANC, but hoping is all I can do. These drugs really knock his WBC, which lowers ANC.
The next two weeks of treatment will be just 15 min IV infusions of Vincristine. This chemo is the one that affects his legs a lot - so I will be on the lookout for that. BUT if I'm not mistaken he may have a two week break in chemo which would be perfect for his 5th Birthday Weekend and Halloween! His bone marrow would be recovering and counts going up and he would be a much happier little boy with no chemo! That would be an amazing gift to him and I'm hoping that is how it will land!
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He's getting as used to it as he can not having hair. At times I think he forgets. He still has strand on top of his head, but mostly gone. It's still falling out. I remind him everyday how handsome he is and how amazing his smile is. At times he follows that comment with "but I have no hair" or "my hair is falling all out." But I just repeat what I said to him again. It will click one day, it will. His class and friends have been well aware of the situation and knew this was coming so it wasn't much of a shock when he walked into class on Tuesday - even though it is a shock when you see. His class and friends have been so, so, so supportive and Caleb and I are so grateful for that. And I just have to hope that adults have the common sense gene not to mention his hair being gone because quite frankly, he doesn't like discussing it. BUT you'd be surprised, there are adults (yes, adults) that lack this gene and do just come out and say some pretty dumb things to a child going through this. All I can do is say a prayer for them, and continue to boost my sons' self esteem about the situation.
Caleb's ANC is very low again. He is at the point where he is VERY vulnerable for infection and to be able to fight it off. Will a common cold affect him and his treatment, no - but would it land us a few days in Arnold Palmer 4th floor Hotel, yes. With that being the case, I am choosing not to send him to school this week. I'm not pushing it if he's that vulnerable for infection and we will reassess on Thursday when he gets another CBC done. He gets shots all weekend and oral chemo till Wednesday night. I'm hoping for a rise in the ANC, but hoping is all I can do. These drugs really knock his WBC, which lowers ANC.
The next two weeks of treatment will be just 15 min IV infusions of Vincristine. This chemo is the one that affects his legs a lot - so I will be on the lookout for that. BUT if I'm not mistaken he may have a two week break in chemo which would be perfect for his 5th Birthday Weekend and Halloween! His bone marrow would be recovering and counts going up and he would be a much happier little boy with no chemo! That would be an amazing gift to him and I'm hoping that is how it will land!
Have a great weekend everyone!
Thank You For your Continued Love & Support!
Love,
Caleb's Mama
Playing his 3DS with his Mario Plush dolls
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Silly faces with Mama
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Love his bright smile!
Tough guys don't do hair
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Being silly before bedtime
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Goo Goo Dolls
Better Days
And you ask me what I want this year
And I try to make this kind and clear
Just a chance that maybe we'll find better days
Cause I don't need boxes wrapped in strings
And desire and love and empty things
Just a chance that maybe we'll find better days
So take these words
And sing out loud
Cause everyone is forgiven now
Cause tonight's the night the world begins again
And it's someplace simple where we could live
And something only you can give
And that's faith and trust and peace while we're alive
And the one poor child who saved this world
And there's ten million more who probably could
If we all just stopped and said a prayer for them
So take these words
And sing out loud
Cause everyone is forgiven now
Cause tonight's the night the world begins again
I wish everyone was loved tonight
And somehow stop this endless fight
Just a chance that maybe we'll find better days
So take these words
And sing out loud
Cause everyone is forgiven now
Cause tonight's the night the world begins again
Cause tonight's the night the world begins again
And I try to make this kind and clear
Just a chance that maybe we'll find better days
Cause I don't need boxes wrapped in strings
And desire and love and empty things
Just a chance that maybe we'll find better days
So take these words
And sing out loud
Cause everyone is forgiven now
Cause tonight's the night the world begins again
And it's someplace simple where we could live
And something only you can give
And that's faith and trust and peace while we're alive
And the one poor child who saved this world
And there's ten million more who probably could
If we all just stopped and said a prayer for them
So take these words
And sing out loud
Cause everyone is forgiven now
Cause tonight's the night the world begins again
I wish everyone was loved tonight
And somehow stop this endless fight
Just a chance that maybe we'll find better days
So take these words
And sing out loud
Cause everyone is forgiven now
Cause tonight's the night the world begins again
Cause tonight's the night the world begins again
As I always say, you are both so amazing and strong! He is handsome with or without hair. I hope the next treatments go well and his pain will be minimal. I was thinking of you both yesterday and I can't believe he will be 5 soon. Time just flies by. We are thinking and praying for you both :)
ReplyDeleteThank You for always being so supportive of us Suzanne. Caleb and I both appreciate it. It means a lot. I know, time flies. I can't believe he will be 5! Hugs to you and your boys! xoxo
ReplyDeleteTell Caleb a happy birthday from all your blog fans!! He is such a handsome little boy, and i hope he knows that as well as you do. He looks like a badass little gangsta with his new hair-do. Except he's to cute ;)
ReplyDeleteKeep it up Caleb!!! Happy birthday!!!
Praying for you both
xo.
Thank You Azrael! Caleb turns 5 on November 2nd and has a countdown going on! He's so excited! Thank you for continuing to follow Caleb's fight and for all your words of encouragement! It's greatly appreciated!! :)
ReplyDeletexoxo
Caleb's Mama!