The Infusion Center

Brian had chemo yesterday. Nemours and Sacred Heart are streamlining the whole chemo infusion thing and working together to create a "simpler" process. It will be better for the children. It only adds another hour to the day. One more medical place to visit. New staff to get comfortable with. The exact same questions and more vitals to take back to back. I was so tempted to have a smart remark when the nurse in the infusion center asked us medical questions about Brian. For example "has he had ________(fill in the blank-nausea, vomiting, fever, muscle weakness, etc.) since he's been seen last." I was sooo tempted to say, "Nope, not in the last 30 minutes." :-) As you can read I have a terrible attitude about the whole thing. I'm sure there is some medical reason that they are doing this, but I come at if from a Mommy's perspective. Plus what we've heard is that this is being done to create a better partnership between Sacred and Nemours. My child HATES chemo and doctors as it is. Routine and predictability are VERY important for Brian. The entire chemo process is difficult because there is so much that is out of Brian's control. He has to be pinned down, physically restrained to access his port. He takes lots of medicine. He has no control. He is not a part of making decisions that are about him and what he goes through. Now, I am not saying our kids have a say in every decision, because they don't. All kids are "forced" to do things they don't want to do at some level. But I am not talking about going to Great Aunt Jane's house to visit distant family members when the kids would rather go to a best friends birthday party. (We don't have a great aunt Jane, just go with me. I am using it as  an example.) Our sweet boy has absolutely no control of major things in his life. It makes the minor things important to him. If he lines his stuffed animals just so, one of his siblings better not come move them. It's extremely important Brian. He will cry and fall apart over someone rearranging his things. Not in a selfish "you touched my stuff" sort of way, but in a "my world is crashing, please, just leave my stuffed animals alone" sort of way. I have talked about his love of tight spaces before. Fred and I pray with and for Brian everyday. We pray that he understands that while everything is out of our control, our loving Heavenly Father has us in His hands. There is nothing that is out of His sovereign hand and He will (and already has) used Brian's illness for our good. Our prayer is that Brian will know that God is love and He cares for Brian.  

Here's Brian getting his vitals taken in the new infusion center. To be accessed and get his chemo administered he sits in my lap and it takes two to three of us to restrain him.