Today, Colin has continued to be sleepy but is otherwise well. His right eye, which wasn’t tracking so well, seems normal now. Generally speaking, he looks like he is drifting in and out of consciousness and doesn’t focus on anything for much time or care to respond to most requests.
However, he became quite excited at the appearance of a hard boiled egg this morning. He loves eating eggs and plays with shaker eggs at school, so this is a very familiar object with happy associations for him. He spontaneously lifted his hand and grasped the still-warm egg. Even after he fell asleep, it was still in his fingers.
The post-surgical brain swelling is still affecting his consciousness and motor skills. To help minimize swelling, the doctors are keeping his electrolyte levels on the high end of normal.
Dr. Jayabose, the pediatric oncologist, cajoled the pathologist to providing a diagnosis today. It’s not clear to me whether this is a final diagnosis or not. The process is somewhat staged; they determine the main cancer type and then have to determine a sub-type. It may also be that today we will receive the news of the diagnosis but that the written report will not come out until next week.
The installation of the life port will probably take place on either Monday or Tuesday, (again) pending the diagnosis. Chemotherapy can begin at any point after the installation (there is no explicit or implicit waiting period), but we have not even approached the basics of that decision.
We expect to meet with Dr. Jabose within the next few hours to get the diagnosis and begin the process of formulating a treatment plan. Tentatively, the plan is to embark on a single course of chemotherapy here in the hospital that would take place over three days and then return home. We would have a break until subsequent courses. Between those rounds, Colin will be seen on a weekly basis and tested for his white blood cell count to determine his susceptibility to infection.
Even right now, we have to be careful since Colin has a drain in his head and he is recovering from brain surgery. While we invite visitors to come and see him, it is important that they not be sick at the time. This will continue to be an issue over the coming weeks and months while his white cell count is low.
On the subject of visitors, we feel that this weekend is a great time for visits. Colin will continue to be on the mend from the brain surgery and has relatively little monitoring equipment on him. His head is bandaged and the drain is not really apparent. He currently has one IV line running into him actively although there is a closed line on the other wrist. He wears a diaper and a hospital gown. While he is quite sleepy, he does become alert at times. He does not smile or show other facial expressions, but he does look at people and follow movement. As the brain swelling recedes, we expect to see an improvement in his alertness.
Because of the brain drain (ha!), Colin cannot sit up freely, although it is fair to say that he is too weak to do so without assistance. The drain apparatus is a bit of a science experiment and requires the precise positioning of the valves. In fact, the nurses use a level to make sure that it is set properly. We had to call the nurse over when Ian accidentally hit a button on the bed and made it move! He’s still embarrassed about it, but the nurse found it comical.
Aidan will be coming to see his little brother on Saturday and we will have a good opportunity to explain to him that his little brother has cancer and is not going to die (while his condition is life-threatening, he is not at great risk for dying imminently). Colin will be coming home and the family will all be together, although we don’t know exactly when that happens. When Colin returns, he may be sick or feel extra tired and sometimes we will need to be careful about him being around people who are sick.
Aidan has been exhibiting a lot of anxiety about the changes in our family’s lifestyle over the past week and we feel that withholding information is not constructive, although there is also no need to delve into needless details. We are receiving wonderful support from the oncology social worker and from the hospital social services. Since we know that many of you will have close contact with Aidan over the coming weeks, we felt it important to make everybody aware of the dialogue we have with him. Those of you with children who know Aidan and Colin may also find it useful in communicating within your own family, if you haven’t already.
We welcome visitors this weekend. We leave it to the discretion of parents whether they would like to bring (not ill) children to see Colin. More detailed information on contacting us will be in a separate post. While this page is useful, it is not clear where some information is, and the updates seem to be the best location (info on contacting us is also available in “About Colin,” but I suspect that many people will not return to that page after the first time they read it).