Monday, January 25, 2016

The good, the bad, the ugly, and Braydens big surgery.






I haven't been blogging at all recently and to be honest I just have not had time but we have LOTS of news. Some good, some bad, and some ugly......

 Let's start with some good news! If you look closely at the picture above you will see that Brayden is holding an ultrasound photo! How it is possible that we are expecting ANOTHER sister is beyond me because we struggled very hard to get our sweet Adrianna. The circumstances are not ideal, but I believe a baby is a blessing no matter the circumstances and we are anxiously waiting her arrival sometime in June.

Now the bad news, Bret and I have separated. Our marriage has become more and more fragile over time and let's be honest, it has endured a lot in it's 7 years. This journey has affected us in so many ways and while I really don't want to get into the specifics, I will say this; I have tried my hardest to make the best out of Brayden's diagnosis and treat everyday we get to spend with  him like a gift. My number one goal, has always been to log as many fun days with my sweet boy as possible and as most of you know, Brayden's laugh is contagious. His smile makes my heart happy which in turn keeps me in a good place. Unfortunately, Brayden's Dad has chosen to cope differently over the last few years and it is no longer something I can deal with or spend precious time worrying about. I still care about him and wish him the best but the time has come to go our separate ways. I'm sure there will be trying days, but overall I know this is the right decision and I am hopeful that Bret and I can co-parent these three kiddos effectively. 

The above photo is the ugly news. The MRI results we received on Tuesday were heartbreaking as many of you already know. The top picture shows our most recent MRI and the bottom is from 3 months ago. This means that Brayden's chemo has been stopped and he was awarded a neurosurgery appointment to which we went to this morning. This mornings appointment was tough. We discussed the following options and had a very real conversation about the pros and cons of each of these options. Here are the basics of each option:

1. Do nothing until the symptoms begin to show. There is no definitive answer as to when the tumor will grow enough to cause symptoms or how that could complicate a future surgery.

2. Use an endoscope and needle to drain the cysts and not obtain the biopsy required for the clinical trial. Minimal recovery and minimal risks.

3. Have major neurosurgery allowing the cysts to be removed with an 80% chance or getting the 200 grams of tissue required for the clinical trial. This option will not cure him as it is impossible to get to all of the tumor without harming him and it comes with a fairly extensive recovery and more risks.

After a lot of discussion, some tears, and more discussion, I selected option #3. I feel like option one is temporary and not a good plan, and I feel like with option two we aren't really gaining anything. Yes, the third option is the most risky, but at this point I feel like I owe it to Brayden to try at least try. After our extensive discussion with the surgeon I feel confident if he doesn't feel like he can debulk enough tissue safely for the trial then he will stop. I made my goals very clear about quality of life vs quantity of life and I think he understands the ultimate goal and he will stop cutting at the right time. He said that there is a significant chance Brayden's left leg will be weaker when he wakes up, but that should be temporary. The advantage of this option is that the area of question that we will be debulking is an area that has been thought previously to be a higher grade, and this is the part of the tumor that hasn't responded well to the chemotherapy. That means that getting some information about this area could be very helpful in trying to treat Brayden. On some level this feels like a 4th quarter hail mary, but I do not want to have regrets about not doing this. If the day comes that Brayden loses his battle with his brain tumor I want to know that we did everything that we could (within reason at least). The surgeon said he may have deficits immediately post op related to his left side but that when he wakes up he will still be my sweet boy and that his mind will be unaffected. I sure hope he's right...... 

Brayden will have another MRI on 2/8 and the surgery will take place on the 2/9. The surgery is anticipated to take 6+ hours and I am sure it will be the longest 6 hours of my life.  He will likely have an external ventricular drain to allow the excess fluid and blood from the surgery to escape. He will go to ICU for at least 24 hours and then stay inpatient for a total of a week. I am not looking forward to seeing him in the ICU again but I know it's part of the journey. As a distraction I'm going to keep doing as much fun stuff with Brayden and continuing to do what we do. As always thanks for reading about and praying for my sweet boy!!!



8 comments:

  1. You are a great mom, and a very strong one at that. Keep your head up & pray for the answers you need. I too will be praying for you all. I know we have never met, but following your son's story for so long, I have developed a special place in my heart. God bless you all!

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  2. Praying for all of you! God bless you Brayden!

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  3. Julie, I have known you since middle school, you were a strong person then you are even stronger now. We will pray for you and little man. Please let me know if there is anything you need big or small

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  4. Oh Julie, I am thinking of you and sweet Brayden always, always. My fingers are crossed tight for him today. Stay strong.
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  5. The child's life is worth any sacrifice, and support for children with injuries or disabilities is very strong and noble act. In a world of so much good, much more than the ugliness and for goodness we must strive every day.
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