From the first time you enter Children’s Hospital you are inundated with people who are here to help your child. Face after face after face. It is this team approach that has been so impressive and reassuring to me. I keep trying to figure out who Allistaire’s doctor is. She doesn’t have one doctor – she has an entire posse of professionals who synergistically work to bring all the resources of science to aid in the fight for Allistaire’s life. The picture above is of the folks who do rounds each morning. Every day there is an attending doctor, a fellow (a doctor who has completed residency but who goes on to specialize further), four 1st year resident doctors, transition nurses, and staff nurses. This is “Team Monday.” Every day this group of folks come together to update one another on Allistaire’s condition and brain storm on how to best to meet her needs. The care that Allistaire is receiving is through the Seattle Cancer Care Alliance which is a collaboration between Seattle Children’s Hospital, University of Washington Medical and Fred Hutchinson. In addition to Team Monday, we have a dentist, social worker, dietitian and Oncology child life Specialist. The child life specialists have degrees in psychology/counseling etc and then complete clinical rotations. They are the folks that brought Allistaire the special duck who also has a Hickman Catheter. They are able to do play therapy with Allistaire and with Solveig and talk with me about the emotional and developmental aspects of what is going on for Allistaire and Solveig. In addition to all these folks there are frequent groups who come in to provide fun for the kids like the gingerbread house making and bring fun toys and gifts to brighten their days. I can also request a volunteer to come play with Allistaire for a two hour block while I take a shower or just need to get out for a bit. There are volunteers who push around the snack carts while you wait in the labs and out-patient clinics. Some juice or coffee and goldfish crackers can do wonders! At 2pm today I get to have a 20 minute neck and shoulder massage because someone is volunteering their time and skills to bless us caregivers/parents. Multiple times folks have come by Allistaire’s room to play their violin or other instrument and sing with her. There is an overwhelming abundance in this place that I cannot stop thanking God for.
In addition to the obvious continued prayer for the chemotherapy to search out and destroy the cancer cells, please also be praying that Allistaire’s Hickman Catheter will continue to function properly. This morning it was “sluggish” according to the nurses. They initially thought they were going to need to do an X-ray to check it’s positioning but later in the morning it was working well again. The more pressing and daily issue is Allistaire’s food intake. She basically is completely uninterested in eating. Even the things she used to eat like bunny crackers are of little interest now. The dietician said that they do not want to see her loose more than 5% of her body weight. We are trying high calorie smoothies but Allistaire is almost totally unwilling to drink them. It is very possible if this continues that she will need to get a feeding tube. I’m not excited about her being attached to one more tube but willing to do so if this is what it’ll take to provide her with the needed nutrients. Somehow I’ guessing 5 bunny crackers, 3 dried strawberries and 10 bites of egg a day just won’t cut it. Another mom that I met described her daughter who wouldn’t eat much as being an “air fern.”