Tuesday, July 22, 2014

Heartbreaking MRI results

Photo: Heading for our MRI..... Brayden did so well for his physical in the oncology clinic this morning :) he sat in the chair for the practitioner to assess him and showed her that he knows the stethoscope is for listening to his heart and the reflex hammer is for hitting your knees! He is getting so big.....
 
As many of you probably already know, Brayden had his MRI today, and we did not receive the results we were hoping for. I was sure the tumor was stable because Brayden has been doing so well but this momma was wrong.
 
We started the day in oncology and Brayden did great. He sat in the chair while they did his blood pressure, temperature, reflexes and listened to his lungs/heart. He then walked to radiology like a big boy and played on his tablet in the waiting room. They unfortunately had a tough time trying to get an IV and they had to try three times, but they finally got it. He recovered from the sedation and got settled into his wagon for a long nap.
 
Photo: All done with his MRI, now let the real waiting (for results) begin!
 
While we waited for the results I was surprisingly calm. I had clearly reassured myself that all would be well, but when Dr G came in I just had a feeling it wasn't great. Normally he makes some small talk first, but there was none of that today. 
 
The tumor is showing a LOT of increased enhancement and when you look back as the last 3 MRI's it is clear that there is a pattern. Consistent increased enhancement is considered progression. We learned today that the tumor "measurements" may never change because of the way the tumor is infiltrating the surrounding tissues. The tumor could be present in other tissue, but the tissue could still look normal on an an MRI, so that is why enhancement is so important.
 
Now that it has been established that Brayden's tumor is in fact gaining strength we must end our chemo vacation and reenter the chemo world. Brayden will get his port (central line) placed next Friday and he will start chemo the following Tuesday. He will be receiving a chemotherapy agent called vinblastine. This agent is normally well tolerated but the most common side effects are jaw pain, numbness/tingling in hand or feet, constipation, and decreased counts. He will receive this drug weekly for 52 weeks, and we will get MRI's every three months. The hope at this point is not to shrink the tumor, but we are hoping the tumor will stop progressing to give us more time with Brayden.
 
I have MANY thoughts running wild in my mind right now........ but the most prevalent one is what if the vinblastine doesn't work? We are running out of options! There is a clinical trial right now for low grade gliomas but Brayden isn't big enough (the medication is given in tablets and the smallest tablet is too strong) and he can't take the carboplatin because of his previous allergic reaction. I know I should be so grateful for the time we have had with Brayden but as his mother I selfishly want to keep him forever.  I can't help but think about these things, and while I am sure things will look better in the morning, I am having a tough time this evening.
 
Before todays MRI I had started to think "this might be okay, maybe the tumor has just stopped growing and maybe it won't start growing again". We were doing normal kid things, and Brayden was changing so fast. It had become so easy to enjoy Brayden and not be afraid of what the future held. That has all changed now, and with Brayden restarting chemo I have decided that we will build him an awesome playground in our backyard for him to enjoy as it will be safer and cleaner than the parks we have been frequenting recently. I ordered him a swing set from Walmart that will be here the first week in August and I am hoping it will bring us lots of happy memories!
 
 

5 comments:

  1. we will keep you i our prayers all of you!!!

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  2. Just know that all of us at Saints (Independence) are pulling for him to beat this! I haven't seen him in awhile, but always a joy when we do.

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  3. I am very sorry to hear this horrible news. I am thinking of Brayden and everyone that surrounds this amazing little boy!

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  4. One day at a time. One prayer at a time. He needs you happy, faithful & strong. Cherish every moment. God bless

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  5. Im so sad to hear about this I am pulling For You and the family. Im praying For all of u

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