Saturday, February 9, 2013

Reflection

 
 
Its been almost two weeks since my last blog, and it seems that everyone in our family managed to become ill except for Bret and I. Brayden caught the virus which won us a trip back to the doctor for a pretty nasty cough. They were concerned for RSV, but after assessing him they said it was a cold and sent us back home. I am not sure how I managed to not get sick with everyone else, but I will take it! In the last couple weeks we have been busy..... We have been shopping and to lunch with granma, and to dinner with Aunt Rachael. Bret and I also went to dinner by ourselves one night and my sister watched Brayden. I am sure him and Lizzie had a ball in the tub, and it was much appreciated. I had forgotten how nice it is to be appointment free for a whole week! Brayden also managed to get out of a therapy session because I just couldn't force him to do it given everything he is going through right now......
 

Brayden has come so far in the last year. Over the last week I have had a lot of time to reflect on where we are in this journey. One year ago I was worried about things that seem so trivial at this point. I am finally accepting what lies ahead and we are getting back on track with doing his therapy, and being pushed to do things Brayden doesn't care for. At first it seemed wrong to push him to do things he hated, but I am finally seeing the bigger picture. I want him to have all the opportunities to accomplish all he can. The future is extremely uncertain and while I would love the future to hold nothing but smiles and cuddles, I know that is not possible...... so I am trying to get as many of those precious smiles, cuddles, and laughs I can get!

I finally feel prepared to fight for him in any way he needs it. I desperately hope it will be to fight for a treatment that can help him, but I am also prepared to fight to withdraw a treatment that isn't helping him. These are decisions no mother should ever have to make, but after talking to some other mothers of children with inoperable brain tumors, I believe I am better prepared.

The first decision has been made. A neuro oncologist that I have never met has decided that a "wait and watch" approach is best because he "thinks" it is a low grade glioma. The plan is to complete another MRI in two months and see how the tumor has changed. Dr C and I do not agree with this plan. This tumor has appeared and grown quite significantly in less than 1 year. What if it's not a low grade tumor? I mean, what if in two months the tumor has doubled in size and traveled down his brain stem? Then even chemo will be unlikely to help us. Given all of these thoughts, and a recommendation from Dr C, all of his records have been sent to St Jude's. They are currently reviewing his case and we hope to hear something early in the week. I do not know what they will say, but I am on pins and needles waiting to hear from them. If they agree with our previous recommendation, then that's what we will do. If they have a different recommendation than I am planning on sending all of his records to Boston for a third opinion. I need to know that we are doing what is best for Brayden regardless of what it entails.
 


On a more sad note, Braydens grandfather from Arkansas passed away on Thursday. I am grateful that Brayden had the opportunity to meet him over the summer. He was wonderful man and he will be missed greatly. Our thoughts are with his wife and Braydens grandfather during this difficult time.

Tomorrow we are doing something that I have not done in quite some time. We are going to church and my parents and my sisters family will be coming with us. This is some advice I have received on multiple occasions since Braydens diagnosis, and I figure it can't hurt. Maybe in some way it will help me make peace with everything that has/is going to happen......

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