04/08/2013

I have not posted in a while because things have been going so well. There have been days that we have been able to pretend we are a “normal” family. Of course, that is after we administer all of the medications, have the nightly feed ready to go, and my purse is packed at all times with syringes and Tylenol in case Mac gets a headache. Mac is eating so we can go out without me having to worry about timing it around his day time g-tube feeds and Mac’s energy has been high enough for short outings as a family. We have actually even to make plans for a few days out without feeling like we will jinx something. If there is one thing we have learned though it is that with every high comes a low. Our low came this morning. Mac woke up vomiting. This went on for about 45 minutes. He had a headache but was unable to keep down his Tylenol. He finally fell asleep on the couch after I was able to sneak in a little Benadryl hoping his runny nose and post nasal drip is the cause of the vomiting. He is very shaky this morning and a bit unstable on his feet. As you know his only symptoms pre-diagnosis were headaches and intermittent vomiting so this morning brought back all those fears about the tumors rapidly growing. I am calling the clinic this morning to see if the test results are in from the tumor marker testing and with these new symptoms feel they may have us come in regardless of whether or not the report is in. I am not really sure how to even express my feeling right now. I sat down and had a big cry once Liam was off to school. It seems like with every bad day we have the fear in the pit of my stomach gets bigger and I can actually feel my heart breaking a bit. I refuse to go back to the angry feeling I had briefly at the beginning of our journey but the fear and sadness never really goes away. I am so fortunate to have so many people supporting Mac and I cannot say enough about the guys on the UMass Lowell baseball team. Mac has been able to go to several games and each time I am more and more impressed by the way they interact with both boys. I am not sure what this journey would be like without all of our new friends. When we are at the games I see them as just two little boys watching baseball. It is the best thing for them because on mornings like this when all I see is a little boy fighting for his life and his best friend and brother struggling to understand why his little brother is so sick. This morning I pray for half of the strength and courage that both Mac and Liam have to try to get through this day and hopefully wake up tomorrow with us all at home to try again to pretend to be “normal”.