On Thursday, Nico was supposed to go to surgery to have a port (to receive chemo through) placed under the skin of his chest wall, and then start the new intensive chemo. But the new chemo regimen is “count dependent,” meaning that they only administer the drugs when Nico’s neutrophil count (number of a certain type of white blood cell) is above 750. So Nico has to have weekly blood work prior to chemo, which will be on Thursdays from here on out. On Wednesday, Nico’s neutrophils were down to 400, so everything was postponed and he is again at a high risk for infection. We got very nervous when we heard Nico’s numbers because he did not get systemic chemo last week (only in his CSF), couldn’t understand what caused the drop and feared the worst. When we asked the nurse reporting the numbers to me why his count was so low, and if we should be worried, she replied “Well the doctor didn’t seem upset, so I wouldn’t worry about it.” Unfortunately, this is the caliber of nursing we get about 50% of the time and I find it disturbing, but that is another post for another day. We insisted the doctor call us. He did and reassured us that the marrow is resetting itself. He said that during the reset, the counts can change dramatically, but overall the blood work looked good and was improving. I feel like we have developed a rapport with our oncologist and we like him a lot. He always engages with Nico directly and he is very patient with Nico’s anxious parents.
The sooner we start chemo, the sooner this ends, and we are eager to put this behind us. That being said, this is a marathon, not a sprint and these delays are going to be commonplace throughout the next year. So for now, we are just enjoying a week off chemo.
Nico has started to walk again. He is very unsteady and clearly does not have coordination yet. So Nico and I have developed our own version of physical therapy. He can walk steady if he has something to hold onto, so we put his Buzz Lightyear and Woody dolls in an umbrella stroller and he pushes the stroller up the sidewalk by our house. He has been completely immobile for almost a month, so I was impressed when he made it almost a block length. It was great to get out of the house. Since the steroids have stopped, Nico’s normal smiley self has reemerged and the swelling is starting to subside.
Nico had his first visitor last night –one of his teachers, Miss Sophie. He was so happy to see her and immediately asked about his other teacher, Miss Alyana. Miss Sophie brought a book that the class made for Nico. Each page has a photograph of one of Nico’s classmates and a transcribed message from each child as well as a drawing. One child promised to build Nico a rocket ship, another promised a hug, one recommended blueberry tea and Ibuprofen. After Miss Sophie left, Nico asked me to read these messages over and over. I read the book at least six times, and then Nico asked if he could sleep with it. At 4:00 a.m., I woke up to the sound of Nico speaking softly as he turned the pages of his book. At each picture, Nico would identify the friend and add, “Loves Nico.” I was both touched and saddened. He had an independent life from his parents through Montessori school, and withdrawing from this life was a real loss to him. This book was so meaningful for my boy and I am overwhelmed by how much love has been shown to Nico and our family. I assured Nico that he would return to school again. We talked about the seasons and the fall when he turns three.
I want everyone to know that we treasure every written word, every card, every gesture, everything. We are not in a place where we are able to convey our appreciation as we are too overwhelmed by this situation. But these things are sustaining us. If you do not understand what I mean, I hope that you never do. There is no way to totally comprehend what it is like to watch your two-year old child endure what Nico is enduring, but the support of your family, friends and community is a lifeline during times like this. Thank you.
The sooner we start chemo, the sooner this ends, and we are eager to put this behind us. That being said, this is a marathon, not a sprint and these delays are going to be commonplace throughout the next year. So for now, we are just enjoying a week off chemo.
Nico has started to walk again. He is very unsteady and clearly does not have coordination yet. So Nico and I have developed our own version of physical therapy. He can walk steady if he has something to hold onto, so we put his Buzz Lightyear and Woody dolls in an umbrella stroller and he pushes the stroller up the sidewalk by our house. He has been completely immobile for almost a month, so I was impressed when he made it almost a block length. It was great to get out of the house. Since the steroids have stopped, Nico’s normal smiley self has reemerged and the swelling is starting to subside.
Nico had his first visitor last night –one of his teachers, Miss Sophie. He was so happy to see her and immediately asked about his other teacher, Miss Alyana. Miss Sophie brought a book that the class made for Nico. Each page has a photograph of one of Nico’s classmates and a transcribed message from each child as well as a drawing. One child promised to build Nico a rocket ship, another promised a hug, one recommended blueberry tea and Ibuprofen. After Miss Sophie left, Nico asked me to read these messages over and over. I read the book at least six times, and then Nico asked if he could sleep with it. At 4:00 a.m., I woke up to the sound of Nico speaking softly as he turned the pages of his book. At each picture, Nico would identify the friend and add, “Loves Nico.” I was both touched and saddened. He had an independent life from his parents through Montessori school, and withdrawing from this life was a real loss to him. This book was so meaningful for my boy and I am overwhelmed by how much love has been shown to Nico and our family. I assured Nico that he would return to school again. We talked about the seasons and the fall when he turns three.
I want everyone to know that we treasure every written word, every card, every gesture, everything. We are not in a place where we are able to convey our appreciation as we are too overwhelmed by this situation. But these things are sustaining us. If you do not understand what I mean, I hope that you never do. There is no way to totally comprehend what it is like to watch your two-year old child endure what Nico is enduring, but the support of your family, friends and community is a lifeline during times like this. Thank you.
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