Going the Extra Mile
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This past week…..Hunter had his second round of Rituximab. His first round was 2 weeks prior and it did not yield the results that we had hoped it would yield. We did not see Dr. Sweeney (or any doctor for that matter) during that first round. This time, however, we saw Dr. Sweeney, Dr. Bhalla, and a couple of students or interns….not sure…they did not speak.
I was able to ask many questions to Dr. Sweeney. I felt like I was heard and he answered in a way that did not make me feel stupid, but in a way that I could understand. He has a heart for children. Any single man who knows the theme songs to ALL the disney movies and ALL the characters of each of those movies, is a man who is in tune with his audience of kiddoes.
I understood that we would know if this course of treatment was going to work within the next two weeks. Hunter still has residual steroids in his system, as well as, IVIg. In two weeks, though, all of that should be out of his system and all remaining B cells should be killed off by this last Rituximab treatment. Then….we will either see improvement (aka remission) or we will need to rethink the course of action that we need to take.
In the meantime….we know his immune system is comprised. To help with that, when we are out in public or around sick people…I went on the hunt for some face masks for children. I could not find any. I did get a few adult sized ones from my son’s orthodontist, but nothing that would fit his face. I finally went to my “go to” place….Amazon. Oh….I love amazon. I found what I was looking for and they work perfectly (though he hates them). CHILD’S FACE MASKS
My next course of action was to help ease his anxiety about going to the hospital. Thanks to tiny veins and inexperienced nurses….he has been poked/prodded/laid on/man handled until I just about went all Hulk on them. Then…we met the IV team. Oh. My. Stars. Let me just tell you….they are all angels sent from heaven.
I found this and let me just tell you….he looks adorable. A friend is going to embroider his name and “OMS Specialist” on it for me. It did not break the bank and it was on prime, so I got free shipping.
Maybe I went overboard….maybe I am coddling him. He is 3. He is my baby. He did not ask for any of this to happen and frankly…..at this point….within reason….the child will get whatever he needs to help him through this process.