Saturday, July 25, 2015

Where do I even begin?

To be honest, I don't even know where or how to start this blog...... It has been so long since my last blog, and until threeish weeks ago we were all trekking along very well. Sure the chemo protocol we were doing made Brayden pretty sick, but it was only every couple of weeks so it was manageable. Our weekly ultrasounds of Brayden's sister showed she was growing and that my body was doing everything it was supposed to be doing for her that it didn't do for Brayden. Working 12 hour shifts was getting harder as I got more pregnant but it was manageable too.
On July 7th, it kind of all fell apart. I knew that the MRI the week before showed some growth, but I wasn't sure what that meant for Brayden......  We started our Tuesday morning as usual at KU for my doctors appointment and ultrasound but I was distracted and anxious to see our oncologist later to view the MRI and discuss Brayden's treatment. Sadly, I didn't made it to that appointment as sister's ultrasound showed that she needed to be delivered. I asked about leaving to go to Brayden's appointment and coming back for sisters delivery (promising to not eat or drink) but everyone felt strongly that her heart rate needed to be monitored closely so I sent Bret and my mom with Brayden to see our oncologist while I got admitted. A big thanks to my sister for coming to keep me company so I wasn't alone. While we were waiting for our scheduled operating room time I was able to video chat with our oncologist, and it was not an easy conversation to have. He said that they weren't going to do anything at Braydens visit, that we could bring him back another day for his IV antibiotic and that we had some decisions to make. The tumor has grown enough that Brayden has failed his third chemo protocol in two and a half years, and as far as other treatment options there are only two option left. Our oncologist didn't seem very excited about either option and said it was completely up to us. To be honest, it seemed as if he is hoping for a better clinical trial to become available but at this point it is unclear if we even have enough tissue left from the original biopsy to enroll in future trials, but I guess that is another problem for another day.
For now, the first option is called Temodar and it can be administered and managed here at CMH. It is oral and would be administered on days 1-5 of 28 day cycles. There is evidence that it can be effective BUT it is the least effective option we have tried up to this point, and it is the last "tried and true" treatment option left for Brayden. The other option is a drug called Everolimus and it is a phase 2 clinical trial. This drug has been shown to be effective in treating skin cancer in adults and is now being trialed in children with brain tumors. Unfortunately this drug is only available by going to St Judes in Memphis. It would also be oral and would be administered daily for the next two years. He would likely need to stay in Memphis for the first cycle (28 days) and return for MRI's and physician visits, but labs could be monitored here through CMH.  
After weighing our options we have decided to stay here at CMH and try the temodar for three months. I feel like we should try the last treatment with statistics showing it works before moving towards a clinical trial. I also am not sure about uprooting him to Memphis. He would be miserable without his "peoples" and it seems selfish to take him away from everything that he knows and loves so that we might have more time with him. When making decisions about his treatment plan I try to keep things in line with what I would want for myself if I was the one with brain cancer. Maybe this is the right way to think about it, or maybe it isn't but for now it's working for us. I want Brayden to spend his time doing kid things with his friends in an environment that he is comfortable in. He loves going to school and I want him to be able to continue that as well. I want his time to be spent having fun, not being poked and prodded. Not to mention that getting Brayden to take anything orally is a real challenge and I have no idea if I can get him to take the Temodar 5 days out of 28, but I have no idea how I could convince him take something orally everyday. We have built a relationship with his oncology team here and the thought of starting over blindly isn't a reassuring feeling. I know that if the Temodar doesn't work then we will likely have no other choice but to go to Memphis, but at least I will know we exhausted all our other options before enrolling him in a clinical trial.
We will be headed back to the oncology clinic on Tuesday for labs and some teaching about safe handling, mixing, and administration. In my mind I naively thought I would be back to taking care of my sweet boy now that his sister has arrived, but since she is breastfeeding I will not be allowed to mix or administer the chemo to ensure her safety. That being said I am taking mawmaw and daddy to the appointment since they will be mixing and administering the chemo. The tentative plan is for Brayden to start it next Saturday so Bret will be home in case it makes him sick.
I have a lot of emotions and I am sure the fact that I just had a baby isn't helping as my emotions are all over the place. Since stopping the chemo (his last dose was nearly 5 weeks ago) Brayden has been a completely different kid. He is drinking like a champ, gaining weight, he is less drowsy and more coordinated, and he is making strides in his development. I am hopeful that maybe this chemo won't be too hard on him and that he can enjoy the rest of the summer swimming and playing with his friends. As far as his port, it will be staying in for lab draws and his monthly antibiotic administration. Initially we will be required to take him to the clinic weekly for labs and depending on how he does we may be able to increase the amount of time in between lab draws after the first cycle. I will be holding my breath for our next MRI and praying for my sweet boy.......
Specifically I am asking for prayers that Brayden is able to tolerate the oral chemo without too many side effects and that the tumor responds to the chemo. Thank you to everyone who is praying for our family, we appreciate it so much and we need prayers now more than ever.
As a side note, Brayden is being an excellent big brother to Adrianna. He tells mommy when she's "really mad and needs some milk" and he has spent hours just staring at her since she made it home. I have also caught him trying to lift her out of the swing and attempting to feed her pretzels which I am sure in his mind is what she wants, but is scary for this mommy. I am so happy that he got to become a big brother and I desperately hope that Brayden will be here for many years so she will have the opportunity to make memories with her brother that she can remember as she gets older.....


  1. Sending love and light that you will have peace and to have laser vision into the very best for your darling boy and beautiful family. That your faith will be unshakeable. I ask Angels to surround Brayden to contine his current rise in health. That a Legion of Angels camp around your family and sheltet from all harm and usher in the hoped and believed for Miracle. Blessings and love

  2. To be honest I like reading your blog and that is so good to share your problems.