Doing great!

Mac started on his new chemo last Thursday. It is called Zolinza or Vorinostat. So far he has been doing great with it. We have not seen any side effects which is a welcome relief. His hair has starting growing in along with his eyebrows and eyelashes. Although he is still a little unsteady on his feet at times and his had tremors still cause him some frustration he is fabulous! It is so nice to see him with the mischievous sparkle in his eye. He doesn't talk much about his feelings but he does tear up when we talk about him repeating 1st grade this year. I feel bad that he is so upset about it but in my heart know that it is the right place for him.

Liam was able to have his 1st conversation with the social worker last week. We were almost able to physically see a weight lifted off his shoulders. He went to bed that night and slept til 12:30 pm the following day! He did stress with the social worker how much he wanted their conversations to stay private and not be discussed with anyone else. When she left I reiterated to him that I would only know what they discussed if he told me. It took a couple of days but he did tell me he was afraid Mac was going to die. This is a conversation no "baby book" prepares you for. I told him the same thing we told him back in January before the 1st surgery. We talked about about how everyone dies and that we were doing everything in our power to help Mac. I think just saying the words helped him. Hopefully, the more he talks to us and the social worker the more his mind will be put at ease. At 9, he should not have to be constantly worried about his little brother dying.

I still have days when the tears seem to never end. It is so hard to live our lives from one moment to the next never knowing what or where we will be. It is especially hard when I know that we will never know why this happened to Mac and what caused the tumor. I am a planner and have never been one for enjoying the unknown and that is all our life is now. I feel and look exhausted all of the time these days. This "new normal" is VERY hard to get used to.  Baby steps they tell me.

"If it weren't for cancer, I'd say I have the perfect life. If it weren't for cancer, would I even realize this?" - Phill