Oh My…
Things have been so busy since January 20th!
Paris was supposed to have the ommaya placed on January 20th for antibody treatment, however the surgery was canceled that morning. Insurance approved the surgery and then canceled it the day of. It was very frustrating because Paris was NPO all day. Apparently, the way in which the claim was submitted and the individuals who were to process the certification number did not have all of the information, therefore they had to deny the approval. The wording in claims is also very important, my insurance will not cover experimental/clinical trial treatment (which is what antibody is)…
This issue was trying to prove that the surgery was not part of the clinical trial, simply surgery. The hospital suggested that if I wanted to proceed with the surgery for that day and not wait for approval I could put a deposit (required that day) of 15,000 dollars and kindly suggested that I could put it on my VISA. Needless to say I decided to wait for a response from my insurance. The very next day after numerous telephone calls and review, the surgery was approved again. One day too late, therefore we needed to reschedule. According to Dr. Kramer, under the experimental clinical trial the actual antibody and scans directly associated with the antibody are covered under the trial, and that is all that is considered as experimental. However according to insurance everything associated with the antibody treatment such as clinic appointments, doctor visits, medications associated with treatment, blood draws etc will not be covered according to insurance. One day of complication bought me another month stay in New York.
Things are constantly changing!!!! So where does all of this leave us??? The surgeon who performed surgery January 8 took biopsies her liver and her bone marrow. The results were benign, meaning no cancer cells present in those areas!! The bad news is that the actual tumor site showed that there were still active neuroblastoma cells present, therefore we did a round of chemo (irenotecan-which also crossed the blood brain barrier to the brain where she relapsed) and focal radiation to the chest area where her initial disease site presented. We began radiation on January 28 twice a day for 7 days, once in the morning and once in the afternoon, leaving her NPO for the majority of the day.
The new date for the ommaya placement is February 6th. We will have to make up some radiation time due to the ommaya. OR time is very hard to schedule!! The original plan was that she would begin 8H9 antibody on February 17 and again February 24th. But that is no longer the case. Now we will not begin antibody until March. After the placement of the ommaya, there is an entire week of nuclear medicine scans. Dr. Kramer suggested that we extract Paris’ stem cells towards the end of the month. I may be able to return home towards the end of February for 5 days. My plan was to return to work in March, but I learned that I need to return March 2 for antibody 8H9 treatment. The stay in New York for March will be at least another 3 weeks. The second antibody 8H9 treatment will be March 17, followed by an MRI of the brain and spine and team meetings. Further treatment will be determined from there. Other than that, Paris is so sick from treatment, and so tired. I am so busy with countless people that I have to remain in contact with for her care.
She also has Rota Virus which is a virus in the stool from the Chemo, which will go away when the diarrhea stops. She is on so many medications that my room looks like a pharmacy. She is primarily on Pentamidine, Nystatin, Zofran, Megestrol, and Fluconazole and she fights me when its time to take them. As soon as she seems them coming she tightens her lips, swings her arms and says NO! Its rough…. being alone for such a long time and managing everything by yourself.
Thanks so much for the ongoing thoughts and prayers, it definitely helps.