The last couple of posts I have written about Gavin were a little sad. In one, I wrote about the revolt he had going on against us as parents. He was angry about everything and cooperating with nothing. In another post, I retold a conversation that Gavin and I had about how he really wanted more hair. And I realize I haven't written much about how he's been since then. Time for a little update.
The revolt has simmered down a bit. The angry, noncompliant behaviors are still limited to Jeff and me, which is a blessing in and of itself. We have a string of good days and then a string of bad days. Honestly, I can't figure it out. That's the beauty of parenting, I suppose. It seems to be more than just typical stuff for his age. And given the sheer trauma that he endured for such an extended period of time, I can completely understand it. We just have to find the right avenues for him to work through it all. And as my counselor so eloquently put it, it is better for him to work through his anger in kindergarten than to deal with it as a 15 year old with a substance abuse issue. Point well taken! ;)
A few weeks ago we met with one of his child life specialists at Children's Medical Center. They did a little "medical play," which is where the child is allowed to play doctor on a little doll as they chat along the way. You can learn a lot through that. Gavin LOVES to play doctor. In fact, that's what he decided he wanted to be for Halloween this year. And let me tell you, he looks adorable in his little scrubs and lab coat! (Pics to follow. I promise!)
So, Gavin was doing "medical play" at with his buddy Kristen there at Children's. We have the most sophisticated doctor kit in the neighborhood. I would be willing to put money on it. But, Kristen brought out a few things that Gavin didn't have at home. The butterfly needle (safely disengaged, of course!) provided Gavin an opportunity to draw blood from his doll. And let me tell you, that doll apparently needed a lot of labwork! I think that poor doll had over 30 blood draws in less than half an hour. But, Gavin was humane about the process. He would tell the doll that the rubber band he was putting around its arm would hug his arm a bit, but shouldn't hurt. And that the needle was just going to feel like a little poke.
Gavin was also given a port access kit to play with that day. For those that don't know, a port is kind of like a permanent IV site that is surgically placed in the chest area for patients receiving chemotherapy. Gavin's was continuously accessed for 15 months because he was on TPN and lipids (IV nutrition). He needed a new needle placed each week. It was a process that he never got used to. It always freaked him out.
I sat across the table, half amazed and half heartbroken, as I watched Gavin go through every detailed step for accessing that doll's port. For example, he spoke about how to make the alcohol come out of the spongey thing in order to clean the area first. And he knew that the area needed to dry a little before sticking the needle in. And he knew just how to work the fancy tape that covers up the port needle once the access is done. It had been over 13 months since Gavin had a port, yet the steps were so deeply embedded into his precious mind. I wished he had forgotten. But, I should have known better.
It struck me then just how much trauma Gavin had been through because of his cancer. He was so young when it all started. So shy. So innocent. So scared. He was forced to become accustomed to needle pokes, surgery, chemotherapy, radiation, sedation, medication, vomiting, weakness, hair loss, mouth sores, and endless medical tests. Doctor visits took the place of possible play dates. Hospitalizations took the place of planned preschool. Therapy sessions took the place of the start of something fun like soccer.
This world of pediatric cancer was all Gavin really knew by the time it was all said and done. And now that he's starting to really get a view of life outside of the walls of a hospital, I can see where he'd start to think, "Hey! I got the raw end of the deal! This is what I've been missing out on!" And it would be easier to digest if everything went back to normal once the chemo drip stopped flowing. But, that's not the way it works in the brain tumor world. The struggles continue. And honestly, I think they always will.
You might read this, shed a few tears for my little warrior, and say, "God bless his little heart!" But, I earnestly ask that you don't stop at that. Please keep Gavin in your prayers. While the body was being healed, I think part of Gavin's heart was being trampled. And that's a lot for a small child to process. So, please keep Gavin's emotional well being in your prayers. Obviously, God's work in Gavin's life here on earth is not yet done. May he grow into a mature young man that can look back and see God's hand in all of it instead of the physical and emotional pain that was required along the way.
And may you remember to say prayers for all of God's children that are giving everything right now to fight cancer. It is a tough road for thes little kids. And every prayer counts.
Thanks for checking in on our family. I can't tell you how much it means to us to know that so many people care. Have a great week!
Much love,
The revolt has simmered down a bit. The angry, noncompliant behaviors are still limited to Jeff and me, which is a blessing in and of itself. We have a string of good days and then a string of bad days. Honestly, I can't figure it out. That's the beauty of parenting, I suppose. It seems to be more than just typical stuff for his age. And given the sheer trauma that he endured for such an extended period of time, I can completely understand it. We just have to find the right avenues for him to work through it all. And as my counselor so eloquently put it, it is better for him to work through his anger in kindergarten than to deal with it as a 15 year old with a substance abuse issue. Point well taken! ;)
A few weeks ago we met with one of his child life specialists at Children's Medical Center. They did a little "medical play," which is where the child is allowed to play doctor on a little doll as they chat along the way. You can learn a lot through that. Gavin LOVES to play doctor. In fact, that's what he decided he wanted to be for Halloween this year. And let me tell you, he looks adorable in his little scrubs and lab coat! (Pics to follow. I promise!)
So, Gavin was doing "medical play" at with his buddy Kristen there at Children's. We have the most sophisticated doctor kit in the neighborhood. I would be willing to put money on it. But, Kristen brought out a few things that Gavin didn't have at home. The butterfly needle (safely disengaged, of course!) provided Gavin an opportunity to draw blood from his doll. And let me tell you, that doll apparently needed a lot of labwork! I think that poor doll had over 30 blood draws in less than half an hour. But, Gavin was humane about the process. He would tell the doll that the rubber band he was putting around its arm would hug his arm a bit, but shouldn't hurt. And that the needle was just going to feel like a little poke.
Gavin was also given a port access kit to play with that day. For those that don't know, a port is kind of like a permanent IV site that is surgically placed in the chest area for patients receiving chemotherapy. Gavin's was continuously accessed for 15 months because he was on TPN and lipids (IV nutrition). He needed a new needle placed each week. It was a process that he never got used to. It always freaked him out.
I sat across the table, half amazed and half heartbroken, as I watched Gavin go through every detailed step for accessing that doll's port. For example, he spoke about how to make the alcohol come out of the spongey thing in order to clean the area first. And he knew that the area needed to dry a little before sticking the needle in. And he knew just how to work the fancy tape that covers up the port needle once the access is done. It had been over 13 months since Gavin had a port, yet the steps were so deeply embedded into his precious mind. I wished he had forgotten. But, I should have known better.
It struck me then just how much trauma Gavin had been through because of his cancer. He was so young when it all started. So shy. So innocent. So scared. He was forced to become accustomed to needle pokes, surgery, chemotherapy, radiation, sedation, medication, vomiting, weakness, hair loss, mouth sores, and endless medical tests. Doctor visits took the place of possible play dates. Hospitalizations took the place of planned preschool. Therapy sessions took the place of the start of something fun like soccer.
This world of pediatric cancer was all Gavin really knew by the time it was all said and done. And now that he's starting to really get a view of life outside of the walls of a hospital, I can see where he'd start to think, "Hey! I got the raw end of the deal! This is what I've been missing out on!" And it would be easier to digest if everything went back to normal once the chemo drip stopped flowing. But, that's not the way it works in the brain tumor world. The struggles continue. And honestly, I think they always will.
You might read this, shed a few tears for my little warrior, and say, "God bless his little heart!" But, I earnestly ask that you don't stop at that. Please keep Gavin in your prayers. While the body was being healed, I think part of Gavin's heart was being trampled. And that's a lot for a small child to process. So, please keep Gavin's emotional well being in your prayers. Obviously, God's work in Gavin's life here on earth is not yet done. May he grow into a mature young man that can look back and see God's hand in all of it instead of the physical and emotional pain that was required along the way.
And may you remember to say prayers for all of God's children that are giving everything right now to fight cancer. It is a tough road for thes little kids. And every prayer counts.
Thanks for checking in on our family. I can't tell you how much it means to us to know that so many people care. Have a great week!
Much love,