In the last week I have been documenting a lot of what has been happening, mostly so I have a record and so I can come back and remember what occurred each day. I have missed writing about positive aspects with my writing being more clinical outlining everything. This is mostly due to the fact that I was writing everything at the end of the day or when I was already heavily fatigued. It makes quite a difference for my mental state at the time. As the week has progressed though things have gotten much easier and I think that my balance of energy conservation and expenditure will get much better. I am having a slow increase in weight which is probably due to both the fluid build up and me eating more. Last night for my 4am snack I think that I ate probably 1.5 cup of cereal. Chex Honey Nuts is one of my favorite cereals and it would be very easy for me to overeat it, but I have been able to eat 1.5 cups and not feel overly full about it. I could eat more I think, but I have erred on the side of caution.
Hopefully we will have the GoFundMe set up shortly as a lot of people have been asking for it. We have still not heard back from Henry Ford in Michigan, so I am not sure what is going to be happening there. Looking at the costs, the costs associated there are about the same as Spain. The money gathered will really help with retainers and things like that. I really appreciate all of the help that people have provided and have had people offer to drive Xavier to pre-skates prior to tryouts as well as during the tryouts. I am not going to be able to watch any of his tryouts so i am curious on how he will perform. i do not think that he cares too much where he plays and he will play high school hockey if he does not make any of the rep teams. It is nice to know that a lot of the other kids on the team will help him out. He gets along well with most of the kids and the adults like him because he is a hard worker and is accountable. Accountability is something that we have been working on with Olivier. He has a lack of accountability and will only cave in the face of insurmountable video evidence. A lot of the times it is not even a big deal but he blows things significantly out of proportion. A couple of days ago he had left the garage door open and insisted it was not him. All we told him was make sure the door was closed, things like this happen and Mel and myself have left the door open. He got extremely defensive and said it was not him and would not admit that it could be him, until we showed video evidence that he opened it when he went in, probably reflexive actions for when he came back into the house. Simple things like this is what we are trying to work with him on. He could have said i thought I did but I guess I forgot. It would have been the end of it. People make mistakes and it is not a big deal. The issue is that he always needs to be right and we are working with him on this.
I appreciate that the kids are old enough now that they can help out with a lot of chores around the house and they do it relatively without much complaint. They do not like doing chores together so they have broken them down so that they do not need to do things together. I am relying on the kids a lot and I am not sure what their thoughts are on this as Xavier remembers how I use to be and he has seen me decline over the years to the point where I can not do as much now. They are quite understanding and will never complain and will try and adjust to help me out.
Today a colleague setup the GoFundMe and it is active and live now. I guess that he will start sharing that and I will also post a link to it.
I appreciate that people are willing to help set this up for me and that we can hopefully hit the target goal of this. The first treatment has been paid for and we will figure out how to pay for the subsequent treatments. Mel was a bit hesitant to set things up in case treatment does not work. I have a CT scan next Thursday so we will be able to see if the 3 Chemotherapy treatments I have had has done anything and I will get another scan when we get back to measure the efficacy.
Quoc Hao