Friday, March 1, 2013

Grade II astrocytoma

Brayden is recovering well from his surgery last week! We enjoyed a snow day on Tuesday with his dad, and then we had physical therapy yesterday. Our PT is very impressed with where Brayden is and feels confident he will walk eventually so that's exciting news!

He is basically back to being his preoperation self with the exception of not wanting to drink fluids. He caught a cold right after coming home so I assumed that it was related to that...... unfortunately he has now recovered from his cold and is still not wanting to drink. For refusing to drink he was awarded a trip back to the doctor today. They drew some labs and looked him over. They didn't find anything wrong with him and are saying that maybe his perception of thirst is different since the biopsy....... I am desperately hoping that's not the case and maybe he's just being finicky for a few days. Brayden also got the opportunity to meet some more of my fellow nurses from work while we were waiting for his labs to run so that was nice. He was all smiles as usual!

On our way home from the doctor I received a call from the nurse at the oncology clinic at Children's requesting to schedule an appointment to see Brayden on Tuesday afternoon. The nurse was also inquiring about my work schedule for the rest of the month as Dr G  (the oncologist I have not met yet) had some other things he wanted her to get scheduled. I gave her my schedule and then asked what things she was trying to get scheduled. She told me she didn't want to overwhelm me, and I told her it was okay and I wanted to know..... she then told me she was trying to schedule a hearing test. HMMM? REALLY? THAT'S ALL? I BET! But I let it go, and thanked her for calling. As I finished driving home my mind began racing a million miles an hour. I knew the biopsy results had to be back for oncology to be calling, and I was imagining the worst. In my mind I just knew that the results would show the tumor was high grade, because why else would this doctor be ordering things before he saw us or getting us in so soon to see him?

I managed to put Brayden down for a nap and do some laundry when we got home. As I was checking to see if he went to sleep the phone rang. It was Dr C's practitioner calling with the biopsy results. As I listened carefully to her tell me it was a grade 2 astrocytoma I expected the tears to come, but they didn't. I was truly relieved that it wasn't a grade 3 or 4. I was also a little disappointed it wasn't a grade 1, but I think I have always known that it couldn't be a grade I because it appeared so early in his life and it wasn't there when he was born.

I am very anxious to meet Dr G and I am sure the next 4 days will pass very slowly. I know Dr G is going to have some things to tell us that will be very hard to hear, but I am looking forward to someone finally sitting us down and telling us what to expect.

At this point I am trying to remember that things could be a lot worse. Ultimately, every second I have spent and will spend with Brayden has been a miracle given his previous history. I am continuing to try and take things one day at a time, and to take the bad with the good. I am so grateful that Brayden is so happy, although I am wondering how long that will last. I mean how many times will I have to hold him down before his demeanor changes? There are so many difficult thoughts when I think about the future, so I basically just avoid thinking about it all together.

I am going back to work tomorrow and Sunday. When I work I basically get to see him for an hour in the evening while I give him a bath and get him ready for bed. It is becoming more and more difficult for me to leave Brayden and go to work knowing that our time together is going to be limited. I can only imagine how difficult it must be for Bret as he is working four (sometimes 5)  10 hours days a weekWhile I wish Bret and I had an endless supply of money we don't, and Brayden needs somewhere to sleep, as well as delicious food to eat :) So off to work I will go..... Thanks to granma and granpa for loving him so much and taking such great care of him while Bret and I work!

On a happier note, Brayden and I have some exciting news to share.........He is expecting a new cousin!!! We are very excited to meet Aunt Jilly's new baby boy in July (or maybe early August if he proves to be as stubborn as Lizzy).

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