At Mooki's request, today's update has a dual purpose to which I will add a third component. The first is to let you all know how Toby is doing and the second is a sort of pediatric oncology primer which will hopefully provide you with a better understanding of what Toby and family can expect over the course of Toby's treatment. In the last part of the update I will let you know how the various coordinators (Fran, Heather, Carie, and Rox) are working to make sure that everyone's good will and efforts are recorded and not overlooked. So here goes
1) Toby completed his first cycle of chemotherapy over the weekend. Aside from several episodes of vomiting, diarrhea, an upset stomach, and a fever, he did pretty well. In fact, today Toby is on his way home. This does not mean that "all is well" or that Toby is no longer sick, rather, that under certain stringent criteria, his treatment protocol (regimen) allows for him to be at home. This leads me to "purpose #2."
2) Pediatric oncology 101 - Toby's treatment protocol is lengthy and intense. Ideally its duration is approximately a year and three quarters, however, because of "bumps in the road" (that are almost guaranteed) such as infections that Toby might succumb to, "low counts" (see below), etc it is not uncommon for the treatment to extend longer than this. I alluded to the parts of Toby's treatment in my very first e-mail, but as a reminder these are intravenous chemotherapy (5-6 cycles, each separated by three weeks), surgery (after the 3rd chemotherapy cycle), immunotherapy (an antibody-mediated treatment that targets neuroblastoma cells, this is what Sloan specializes in) interspersed between all the other treatments and which lasts until day #586 of the protocol, harvest of Toby's stem cells (to be used only if necessary later in the treatment), radiation, oral chemotherapy, and another medication shown to be effective against neuroblastoma.
What Toby can expect following much of his treatment is that approximately 7-10 days after chemo and radiation his "counts" (white blood cells that fight infection, hemoglobin that delivers oxygen to the body's tissues, and platelets which clot the blood and prevent bleeding) will begin to drop. This means that he will be susceptible to infections and require periodic blood and platelet transfusions. When he is not admitted to the hospital for chemo or other treatment, he will have to come to the hospital for clinic visits. Initially, clinic visits occur daily. At the clinic Toby will have his blood drawn and after each chemo cycle, he will receive daily subcutaneous shots with something called G-CSF to boost his white blood cells. This can be quite painful. If at any time Toby gets a fever, he has to immediately come to the hospital for intravenous antibiotics and depending on his absolute neutrophil count or ANC (a subset of white blood cells responsible for fighting infection, especially bacterial infections) he may need to be readmitted to the hospital. Mooki asked that I be specific about actual numbers and while I am not familiar with Sloan's exact criteria I do know that most pediatric oncologists will admit a child for i.v. antibiotics with an ANC < 500 and will transfuse blood / platelets for a hemoglobin < 7 and platelets <20,000 respectively. The antibody treatment that Toby will receive, (called 3F8) is usually given as an outpatient (kids must come to the clinic once a day for several hours). The main side effect of 3F8 is pain.
While at home Mooki and Stephen will have to change Toby's broviac dressing three times a week (his central venous catheter - the i.v. through which he receives his medicines). In the early stages of treatment, this can be an anxiety inducing event for both kids and parents, not to mention at times quite discomforting for kids.
Toby's pain is much better than it was two weeks ago, but he is by no means pain-free. Once at home he will most likely still require oral (and possibly i.v.) pain medication. There are many "pain meds" that Toby can benefit from (codeine, morphine, not tylenol which can mask a fever or motrin that further decreases platelet counts) but they don't taste great and are associated with their own side effects (constipation especially).
One of the more important (and frustrating) aspects of Toby's current situation is the need to be hypervigilant concerning his risk of infection, which in kids whose immune system is compromised as a result of their treatment, can be life-threatening. What this means is that contact with anyone who is less than healthy is best avoided. Even what most people might consider inconsequential, like a common cold, runny nose or nagging cough can mean trouble for Toby. Because kids, even ones who are not sick, often exhibit many of these symptoms, Toby won't be able to spend time with his friends as readily as he would like.
I hope this helps you better appreciate what Toby, Mooki, Stephen, and Yoni are faced with. Now on to the final part of my update.
3) Thanks to the tireless work of Heather (Beansprouts), Fran (UJC), and Carie (PSJC) together with others (Rox from UJC) we have come up with a calendar. Each day, a different person has/will be on-call to help out in various ways. The calendar also elucidates who is providing meals (lunch/dinner), picking-up groceries, doing laundry, and being on "Yoni-call." Rather than contacting the various coordinators, each one of you can now access the calendar and include yourself to help out in whatever way you see fit at a time that is convenient for you. The calendar can be found by logging onto "google calendar" and entering firstname.lastname@example.org as the login and toby2007 as the password.
Once again, I want to thank you all for your help and support. Please know that we are awed by your kindness and willingness to be there for us.