Thursday, January 6, 2011

Sticks and Stones

CJ had his port access, flush, and blood counts today. He did really well even though it takes a lot of effort for him to get ready to go in the morning.

I purposefully made the appointment later in the morning to try to help with this but I think it only makes it worse. I think getting up early and out is wiser. Better to have no time to think about what you are about to face that day. I was able to cheer him up a bit once we were on our way. I wanted to sit there in silence too but I knew that wasn't serving or loving him so I started talking to him and we had some fun to lighten the mood on the way there.

When we arrived, they told me we needed to check in at the Cancer Institute before our appointment since it was a new year. The Cancer Institute is for all cancer patients at Memorial. As we sat and waited, I realized that most of the people checking in were elderly. CJ was the only child at that time. I am typically surrounded by kids with cancer so this was a different view. It reminded me that this really should not be a childhood disease. What always amazes me is the shock and sadness the adults with cancer get at the thought of a child battling what they are going through. They hate it. You can see it on their faces. However, I see it the opposite. I hate the thought of an elderly person battling what I have seen CJ go through. They don't have the advantage of youth or the benefit of naivety on their side.

After checking in , we made our way over to the office. I was a little worried about getting good blood return on the port because his port tends to be sluggish if he has not been accessed in a while, but he did fine with this. His blood counts were good! His doctor said his white blood cells are a little slow in coming back up but that this is not too uncommon and that he is doing just fine.

They said to come back in a month for blood counts and another port flush and they have him on the schedule for April to get his next set of scans and the port removed if all is still clear and there is still no evidence of disease at that time. NED! NED! NED!

CJ heard the doctor mention this and said, "My birthday is in April. That will be cool to get the port out for my birthday." His doctor assured him he would not schedule it on his actual birthday because that would not be a cool way to celebrate. Surprisingly, CJ just looked at him and said, "I don't know about that, sounds cool to me!" He probably can't think of a better birthday present than to get that port removed.

We have been so blessed with this port. CJ has done amazingly well with it. He has the same port that he got implanted in his chest over 2 years ago when this all started. Many kids have had to have it replaced multiple times due to infection or malfunction. We were always worried about that but praise God it has not happened.

CJ's port sticks out a lot and is very visible. This used to bother CJ a lot and make him very self conscious but his doctor told him today that it was a good thing because many kids put on weight and the port get buried deep and is more difficult to monitor and access.

You would be absolutely mortified if I told you the stories other mothers have shared with me about they ways their cancer child is picked on and ridiculed by kids at school and sports because of having cancer whether it is for being bald, having the port or just the cancer in general. CJ has been so fortunate to be homeshooled and attend a church where the kids have been so compassionate towards him. I remember when a whole group of kids and grown men shaved their heads to stand in solidarity with him. What a blessing that was.

On that note, please take some time to talk to your child about other kids who may be different or struggling with something. It may be cancer or speech impediments (which CJ also struggled with) or skin disorders or any visible dysfunction. Don't think it won't be your child that ridicules another child. No parent thinks it is their child that is the one doing the things that are shared with me. They would probably be just as mortified as the parent of the child being ridiculed.

I will actually go ahead and share that even good kids from good homes who you would NEVER think would hurt or belittle another child can do this whether intentionally or out of ignorance. My OWN child, who is the sibling of a cancer child did this at the age of 7. We were completely mortified at his comment to another child who was an amputee. PLEASE PLEASE PLEASE talk to your children about this sensitive issue. You can not imagine the pain you could save someone by having a simple conversation with your child and guiding them in this area.

I will tell you that "Sticks and Stones" is the BIGGEST LIE I have ever been told in my life. You know... "sticks and stones can break my bones but words can never hurt me." I don't know if that is still a popular school yard chant but it was when I was little. To this day I can't imagine who came up with that. They were obviously never called a name or ridiculed in their life. I can't really remember all the details of much of the physical abuse I have suffered but I can tell you word for word every name I was called or mock I heard directed at me. I can tell you exactly where I was standing when it was said and the look on the faces of the ones saying it. So yes, words can hurt you! Teach your children to be kind with their words. And since most of my verbal abuse came from adults, consider your words carefully as well!

As I said, CJ has had to deal with very little of this, thankfully. Most of the things that were said that hurt him were completely unintentional like I remember once a child seeing a welt on someones arm or something and started joking loudly, "A tumor, a tumor, you have a tumor." CJ was there and was obviously a little offended by this but just figured the kid was clueless as to what that meant anyway. All I could think to tell CJ was that if he did not have cancer and a body full of tumors he would have been clueless as well.

Other comments were outright funny. CJ was at baseball practice this past season and one of the little brothers of one of CJ's teammates was running bases. He ran into CJ at first base and put up his hands as he ran into CJ. His hand must have landed right on CJ's port because he looked up at CJ really strange with big eyes and then walked off and started saying, "Dude, that kid has some big nipples." He was telling all the kids on the team he couldn't believe how big and hard CJ's nipples were. I asked CJ what he did and if he explained about the port and he just said, "No, I thought it was funny so I didn't tell him." Thankfully, he took that well.

Still, I am glad I wasn't there though. I would have went into momma bear mode before the boy could have formed a grin on his face. It is amazing how us parents are so much more offended than our own children are. CJ was able to laugh and laugh at so many things. That really helped me immensely. I will admit I struggle with any form of mocking or name calling being for fun or out of love. I can see that healthy people do well with this but for those that were on the receiving end of harsh words and little praise most of their life it is a difficult transition into the healthy side of affectionate mockery.

So once again, we have another appointment under our belt. We are in a new year looking forward to the end of another phase for CJ. Port removal in April! NED NED! Keep praying!

Thank you again for all your love and support and prayers! I pray the journey of this blog these past two years has been as much a blessing for you as it has for us.