How is He?

A little update.

Yesterday we started maintenance. I was surprised at the range of emotion this held. In order to do this we to choose if we wanted to keep Trystian to stay on a study or take him off. If we already decided why is this hard? Because at this point things change. The normal becomes randomized. He won’t get the same treatment as all other kids. It (for him) means getting more chemo than other kids in 3 other groups.

I am really having a hard time with it. He seems ok today. A lot of sleeping after treatment yesterday. He is actually getting less meds than he did in the last phase. It is all so weird to try and follow. We are given a a calender for every single day there is a battering of medications listed and doses. We were so excited to fins we will only be in clinic every-other week now. I feel totally deceived. We are in clinic only every-other week…true! We have just as much going on with all his meds though (more). He has at home for the most part only had meds 2 days a week. There are times when it is prescribed and we have to do more, but nothing like this. I cried because I became totally overwhelmed with the schedule. We also find out during this time if any of this is working. the time between the clinic visits and the lower doses are to see if his body will make healthy cells on their own or if his cancer is still ruling. FUN RIGHT?
 They gave us a finish date. AUGUST 1 2015. As long as we have no hang-ups. We are planning a HUGE celebration for this date. I work hard to protect Him. I believe he is doing well because Jeff and I work so hard to make sure he doesn’t know all the changes that have to be made to make this life work. The hurt that comes along with making these choices are so layered we have yet to get to the center. We never know we have another layer until it it heavily laid atop.

Friends have become a distant memory as some have crossed boundaries and insulted our choices. Family has drawn closer. Tempers are hotter and fuses are shorter. The ability to function each day depends on a moment. Never knowing where that moment is can be maddening. I think anger would be the honest overall emotion. He is angry a lot. We as parents are angry often. Our almost 6 year old has been a champ, but he knows. He understand things are never normal. He is still away from home as often as he is home. there are times where I am determined to keep him home and I am not sure they are always the best choice.

The ability to cry out to God has become my strongest. I cry out in fear and relief  I cry out in joy and thanksgiving. I know weird, but we have so much to e thankful for. We have a son who is trucking along. It sucks!, but he is still making it. I have a job I really enjoy. NO, I LOVE it. I find so much release and please in doing what I am sales and working with people. I am SO thankful for a boss who see’s through a different lenses and encourages me to take care of my family first and job second.

HOW IS HE: Taken care of!

HOW ARE WE? Scared out of our mind!