Nico started school today! He has three favorite shirts, they are all yellow, and he never voluntarily wears anything else. Today when I told him it was time to pick his clothes for school, he went into his room and reappeared in the class shirt from Montessori Community School in Salt Lake City. The year that the school made these shirts was the year that Nico was diagnosed. So the design, “Toddler Galaxy” with a sun, moon and stars (the name of each of the three classes) was done on the leukemia awareness color of orange as a nod to Nico. It was really touching to me that he picked this shirt. But he has never let me forget that he misses his school life at MCS and talks about his guides and friends there everyday.
The day went well from what I understand. His guides told me that a younger friend lost his shoe and Nico stopped to reassure the boy that he would help him. I always hope that the trials of treatment will result in increasing his capacity for compassion and kindness. So these stories are important to me.
Our experience at clinic is still . . . let’s say variable. I am frustrated. Sometimes I think it is a good idea to document the difficulty and aggravation inherent in our current healthcare system, but not today. The last clinic visit was miserable, but I sent a short email touching on just a few of the issues, and almost immediately got a phone call from our primary attending oncologist. We were on the phone a long time. We had not seen our primary other than passing in the hallway, so he was unaware of what transpired. He was so eager and sincere to make things right. I do not know that he can fix everything, but I genuinely believe he will try. I wonder how you fix problems that run across so many departments? I have to focus on getting my son through this process, but I would really love to know that we helped to improved things for the next kid.
Maryland is a really friendly state! We get the best customer service here and people are generally really friendly. Recently, we made Nico’s dreams come true and took him to Monster Truck Jam. I am attaching a picture from it. I was scratching my head as to how Jeff and I created a child obsessed with trucks until I saw Jeff’s face in these pictures.
The day went well from what I understand. His guides told me that a younger friend lost his shoe and Nico stopped to reassure the boy that he would help him. I always hope that the trials of treatment will result in increasing his capacity for compassion and kindness. So these stories are important to me.
Our experience at clinic is still . . . let’s say variable. I am frustrated. Sometimes I think it is a good idea to document the difficulty and aggravation inherent in our current healthcare system, but not today. The last clinic visit was miserable, but I sent a short email touching on just a few of the issues, and almost immediately got a phone call from our primary attending oncologist. We were on the phone a long time. We had not seen our primary other than passing in the hallway, so he was unaware of what transpired. He was so eager and sincere to make things right. I do not know that he can fix everything, but I genuinely believe he will try. I wonder how you fix problems that run across so many departments? I have to focus on getting my son through this process, but I would really love to know that we helped to improved things for the next kid.
Maryland is a really friendly state! We get the best customer service here and people are generally really friendly. Recently, we made Nico’s dreams come true and took him to Monster Truck Jam. I am attaching a picture from it. I was scratching my head as to how Jeff and I created a child obsessed with trucks until I saw Jeff’s face in these pictures.
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