Friday, April 2, 2010

Done? Done.

GFR of 44 yesterday was the final straw that caused The Boy's doctor to call off the dogs.

Previous concerns, as I have mentioned, were the kidney function (as measured by creatinine levels, GFR tests, and blood pressure) and the recovery of his blood counts in a reasonable amount of time. I had also elaborated on the doctors' concerns and our concerns about weighing the effectiveness of the chemotherapy drugs in keeping cancer from coming back versus the harshness of the medications and the collateral damage to our little boy.

Although we had expressed this concern to The Boy's doctor, feeling free to do so once he brought up the idea of treatment not going the whole way, we feel comfortable knowing that it was the doctor's decision and one that he made after consulting with other doctors.

Kidney transplant is still, most likely, in our future. Who knows when?

We have already received a lot of positive feedback from friends and family about what remarkable news this is, that The Boy is done with chemo. While we are glad about that, and the chance for us to live our lives and for him to be a "normal" little boy in short order, it isn't all good news. It doesn't escape us that the reason for discontinuing treatment is that his kidney has been so damaged. It also doesn't escape us that he has just as much chance of being cured completely as he has of requiring more treatment later on, either for Wilms recurrence or a secondary cancer. So if we aren't jumping for joy when we receive a happy message, please understand, it's not you. And it's not your fault if you don't know what to say, because we don't know either.

As we have expected to be forgiven (and sometimes have not been, by those who should have cared the most), we will forgive anyone who asks the "wrong" question or says the "wrong" thing if the intention was good. As we have not always been able to make time for family and friends, we plan to incorporate that lesson into the rest of our lives in allowing others the flexibility that has been a necessity for us.

I still have visions and memories of horrible things. I have visions of the family fallout brought on by The Boy's illness and Meatball's arrival (really, that it brought out things that were already there, and revealed people for who they really were). I don't know if I'll ever recover from that. Musical Daddy had a similar experience regarding something else in his life, where all of a sudden he started thinking about it again and couldn't sleep and felt angry all over...that's how I feel about a lot of these issues that started awhile ago, escalated when The Boy was sick, and came to a head when Meatball was born. And every time something comes up that relates to it, I'm taken back to that time. It's why "forgiveness" is so difficult, particularly when no one thinks that they need forgiveness or that anything was done to hurt me. I'll never get back what was supposed to be a pleasant beginning of life for Meatball. It seems as though no one wanted him and no one wanted to be around him, and that he was my problem that interfered with everything, including care of The Boy. It was these crushing feelings that stopped me from getting real help with him and suffering through two months of tongue tie. And having him suffer, and cry all the time, and be miserable. Somehow I thought that I deserved it and that people who didn't like the way that I live my life and raise my children, particularly that I nurse my children, wished pain and suffering upon me, and that it worked. Mostly the delusions of a still-hormonal mom of a newborn. And it just kept going and going, the fighting, the back-and-forth...and all that Musical Daddy and I wanted to do was to take care of our children.

Okay. Enough.

The point is that, slowly, we will start to get some sort of life back. What we had is gone. We left the house that we had. Left the state. Left those doctors and nurses and that hospital. Left jobs, of course.

Now, we start over. We didn't think that we needed to, but as long as we have to, we may as well do it right.


Elana said...

Well I for one will be praying for The Boy's kidney to keep functioning as best it can and for the cancer to stay away permanently. But I am glad that you are able to at least somewhat put this chapter of your lives to rest and go full on ahead to the next one. *hugs* to everyone in your family!

Jennifer said...

I read your blog all the time and I 'think' I can understand what you might be going through since my girl is about the same age as your boy, but I know that I really have no clue. I hope to never have a clue. I hope and pray that this is the end of your Cancer chapter and David continues to heal and take care of his kidney issues. I look forward to only reading "normal kid" posts from you guys.

I wish you didn't have to deal with the added stress of the family issues. I wish I knew how to take things back to the way the used to be. I have my own family/friend issues that I think about a lot. I wish it were easy to just forget about it and move on with my life, but I always find myself wishing things were never said and things never happened. I wish I could fix things which are not completely in my control. I don't even know where to start. I hope things get better for you guys in that area too. I wish I had advice, but I don't.

Best Wishes to you and your boys!!

JC said...

I know it is always scary to think of cancer reappearing. I do the same with Summer. But, I am just so thankful that she is healthy now and not being torn down physically by all the chemo. It will take some time to get those fears out of the front of your mind and into the back. I know you all are going to have an awesome summer with your two bundles of joy. Enjoy the good times ahead!