Monday we had "education" before we left the hospital with the Nurse Case Worker. As I said before, it was hard to hear and quite frightening. Fortunately, my mom and our friend Kerry were able to be there with me and it helped having mom hear about what to expect and help me out here for the next week.
Kerry is a nurse and was able to take wonderful notes. She was able to summarize quite nicely all of the information and the treatment plan to make a little more sense in bullet point form:
Treatment plan
Chemotherapy
Current treatment is mapped out about 29 weeks, does not necessarily follow a calendar as surgery, low ANCS {Absolute Neutrophil Counts- white blood cell} and fevers will delay some treatments.
All chemotherapy treatment will be provided inpatient at Randall Children’s Hospital. It is anticipated that Irene and Atticus will be admitted to the fourth floor for 2 to 3 days each time of chemo for the next six months. {three weeks on, two weeks off}
Atticus may not be around anyone sick, and if there’s any concerns about fever, runny nose or viral illness please do not visit Atticus. Handwashing is mandatory upon entering home, before eating, after toileting, and before eating food.
Future treatment will be based upon results from scans, and tumor necrosis.
Limb salvage surgery will be at OHSU
Atticus must walk on crutches, as he is not to bear weight on the tumor.
Clinic visits will be twice weekly.
Recommended ideas for how to help Irene, per hospital staff, are gift certificates to hospital cafeterias, gift certificates to New Seasons {walking distance from hospital}, and mattress pad as that bed in hospital for Irene is very stiff.
As you can see, we will be in the hospital a lot, for quite a long time. We will have a couple of weeks off each round from chemo, but we are still visiting the clinic frequently for blood tests and like today, extra IV hydration, anti-nausea medication, blood and platelet transfusions.
We visited the Orthopaedic Surgeon yesterday at OHSU as a follow up from his biopsy and we learned more about the limb salvage surgery that will happen in 10 or so weeks. He told us the different options that are available and how there are growth implants so he can keep growing and they adjust the implant accordingly. We saw the MRI again of his tumor which always seems stunning every time I see a scan of it. That thing is just taking over his femur! There is no "removing the tumor"... it is a part of his bone, all of which will be removed. They will do more scans after chemo rounds to see how things are going and decide at that point the implant to use and more details on the surgery then.
Limb Salvage Yard
Atticus has still been struggling with continued nausea, dizziness and general not feeling well. He's still eating bits of food that my mom makes for him, and he really doesn't want them to leave, as she is a much better cook than I am! Today at the clinic we talked about the anti-nausea meds and trying to solve it a little bit better and change things up a bit for him, trying to make him more comfortable.
We are aiming to take one day at a time, still processing and taking in all of the life changes. Thanks again for all of the support, the food, the messages, the cards in the mail, the gifts. We are so amazed at our support system and how much we are loved.
