So, Blaise did well after our first sick admission for fever. He is home on oral (GTube) antibiotics until his counts recover. This has been a rough week. Physically, it relieved me to know Blaise needed blood- he really looked so tired, so sick. He perked up considerably after his first blood transfusion. We will go to clinic tomorrow to double check he is on the upswing. However, his anxiety is what troubles us the most these days.
We are currently titrating his feeds up and will reach his goal tomorrow night. So far, he has been more interested in eating and definitely has more energy since starting feeds which was the hope of our nutritionist.
Nerves
Blaise is very quiet. I will say, he always was a good talker- but he only speaks when he wants to. That can make it challenging to truly understand what is bothering him. The first night after his GTube, port, and testicular biopsy, I saw him in so much pain. It appears that he is carrying this memory with him. Blaise is incredibly anxious when it comes to assessing or accessing his port or GTube. If his shirt rides up due to normal little boy activities (playing, fidgeting, etc)- he quickly looks at me and says "Please put my shirt down". The "I'm sorry" that Andrew spoke of last post have continued- and they get sadder each time.
The Child Life Team at CHOP is committed to Blaisey. They told me that it won't be reminiscent of a UFC cage fight each time I hook him up for feeds, and that it will get better. Things are slowly getting less sore and less invasive- his GTube can be undressed now and he can bathe swim and play with that as tolerated. He is getting better, but he holds on to those memories. Our oncologists frequently tell us this will live with Andrew and I forever, but will just be a blur for Blaise. Days like the last few make that hard to believe. One of our oncologists told us that because he is so quiet and thoughtful, he will absorb coping techniques. So we have tried to normalize his experience. Case in point: Didn't you guys know that Kristoff from Frozen also has Ewing's Sarcoma and a Port, GTube, and Biopsy site?
Birthday
Tomorrow, Blaise is four. A four year old little boy. We are having a small festivity thanks to close friends and family. I wish this was a celebration without my son being sick- the Ewing's Sarcoma elephant in the room sort of let's the air out of the tires. But, I am aware that being brave and being happy for this little boy will resonate with him and in turn lift his spirits. And so for that reason, I am looking forward to celebrating tomorrow. Here are his new sneakers- he is ready for physical therapy!
Pictures
Thank you, J. A co-worker and friend of mine is coming to our house tomorrow to take pictures of Blaise and our family before he loses his hair. J also took pictures of Blaise when he was a newborn. I am so grateful for this beautiful gift and it will surely be a meaningful keepsake of this journey. Here is a picture from Blaise's photo shoot as a baby in 2012:
Thank you to everyone for your unending support! I am doing the most anti-Annie thing and saving all of your notes and cards- hoping to get you each a thank you note, and also to document this unreal journey our family is undergoing. Thank you all so very much. Here are some pics of the kids at home enjoying each other (Or their "boppies" aka pacifiers)
