We arrived in New York without a problem and settled in seeing all of too many familiar faces. It was good to see everyone again, I just wish it wasnt at teh Ronald McDonald House or at the Hospital. (more…)
We finally made it to the antibody stage!!!! The antibody that Paris is receiving is 8H9 and is tagged with radiation and only travels within the cranial/spinal fluid to target any microscopic neuroblastoma cells that may remain. 8H9 nis only allowed to be given a total of four times. We started the antibody treatment 8H9 on March 3. The first dose was a test dose. It was 2 mCi. The next two following days March 4th and 5th Paris had her ommaya tapped and cranial/spinal fluid was drained and tested. Pet scans followed to ensure the flow of the antibody. The scan showed that the antibody engulfed the entire area, with the thought that if any cells remain they would be surrounded and attacked by the antibody. She received her second dose March 10. This dose was much stronger 34 mCi and classified her as radioactive. We had to spend the night in isolation in another hotel room. The following two days she received a crainal/spinal tap to check the fluid and test teh level of radioactivity. I had strick rules for this dose. An average adult is only allowed 500 m rem per year. Paris was giving off 190 m rem per hour, meaning that if I held her I would reach my legal limit within 3 hours. They told me that I must limit holding her for 30 minutes for the next 3 days, but if necessary can hold her more I would just be over my limit.
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)…
Well I should have waited before writing the last email….
We consulted with the doctors yesterday and they found a 4cm mass (neuroblastoma) surrounding the aorta. They said that this most likely is the original location of the tumor, as before they thought it was the spinal canal, when the 7cm mass was removed they are now able to see the area around the aorta. I am so confused because just yesterday they were debating on even doing surgery and possibly going straight to antibody.
The surgery is scheduled for tomorrow. The surgeon says this is a very serious life threatening surgery, more complicated than the brain due to the fact that if the aorta is clipped she could have excessing bleeding, causing fatality. the other risk is the some of the blood vessels that supply blood flow to the spinal canal are encompassed by the tumor. if these are the only supply to the spinal cord it could cause paralysis, which would no t be determined until after surgery. the surgeon said that most likely there are other sources to the spinal region, but he has seen both horrible outcomes happen. this is another time that we really need your prayers for a positive successful surgery, where they can remove all of this tumor.
In the past her surgeries have been the best possible outcomes, so we are praying that this time will be the same. They will biopsy the tumor tomorrow and if the cells are “active” then they are thinking that they will need to radiate that area. (meaning that we will only have 1 dose of radiation that is considered safe left). If the cells are not active then they will begin antibody.
Ralph flew to New York today and we will be in ICU for the next 10 days. Please keep paris in your thoughts and prayers tomorrow.
Paris and I made it to New York on January 1st. We had a MRI scan on the 2nd of the brain and spine. We have a CT of the chest, abdomen and pelvis on the 6th. Depending on those results we may have surgery in the thorasic area on the 8th. If the scans determine that there is enhancement due to post surgery, chemo and radiation then she will be declared “cancer free” at this time and ready for antibody treatment to target any free floating cells. If there is enhancement due tumor, which will be decided when the scans from September to now are compared then surgery is needed. It will be declared that there is tumor if the area has responded or changed based upon the chemo treatment she had received. If the area stays the same in size and doesn’t change then it most likely is scar tissue.
I’ll let you know as soon as I know. Hopefully we will be ready for antibody.
Talk to you soon
***News from Dr. Kramer***
I just spoke with the doctors and they began by telling me that they had good news. They reviewed the MRI scans that confirmed that the initial site in the thorasic area was in fact disease, however it was initially very small and now that Paris had gone through Chemo in December it even further decreased the enhancement site area to almost nothing. Now they are consulting whether or not (risk vs benefit) to have surgery on the 8th because the area is so small. They think that maybe the antibody will be enough rather than to put her through surgery. The team will schedule surgery for the ommaya and start antibody (8H9). This is a different antibody than what I had researched. I had assumed that we would be doing 3F8. Another option is to keep the surgery date to remove what is left in the thorasic area and after she recovers begin antibody. Either way we are beginning our first cycle of antibody !!! For now they have determined that the area in the brain is enhancement due to post surgery and radiation. They will continue to watch the area closely. Paris is doing well here at the house.
When I gather more information I will let everyone know.
Thanks again for the ongoing support, thoughts and prayers.
We have completed week 1 and are now into week 2. Paris has been doing well through this whole treatment in NY. She has had a few of the symptoms from Chemo and radiation (fatigue and diarrhea) but nothing too bad. The best news that we got is that the bone marrow tests showed no sign of disease in the bones or marrow, meaning one less step of treatment in the future, and ultimately a better outcome for Paris.
Her blood counts are good higher than 8.0, meaning no blood transfusions needed. We thought that she would need a transfusion by today but they were 9.2 (nothing is of the norm with her) So she got a break.
Shes standing for seconds by herself, saying all types of words and still so active.
As of now the time-line looks like we should be coming home the week of Thanksgiving to start treatment in Chicago December 1st for 1 intense week of chemo and 3 weeks of isolation either at home or in the hospital and then be back in NY for 3 weeks in January (date not yet determined) for scans (depending on the scan results either more chemo, or the antibody treatment) Its so hard to plan, because there are so many different possibilities. Her treatment plan is contingent on so many things such as fever, infection, affects from Chemo, common colds, response to Chemo, possibility of relapse etc.. Dr. Kramer says she can’t plan past the 3 weeks in January. But says that Paris looks good and is responding well to treatment now (she needs to remind me everyday to take it 1 day at a time).
Thanks again for your thought and prayers.
Ralph, Lauren & Paris
Ralph and I arrived in New York and are staying at the Ronald McDonald House. The house is nice and has alot of activities for the kids. On Monday Paris was fitted for her radiation mask, Wednesday Paris had routine tests for pre-admission for surgery and today (Friday) we have been at Sloan Kettering since 6:30 am and its about 4pm now. We were bumped due to an emergency surgery and have been waiting ever since. The plan is to be admitted around 6pm, surgery will last about 2 hours and then she needs to be monitored. Paris is NPO since yesterday night and is VERY UPSET!!!! I can say its been the worst that I have ever saw her. Today we are to have the port put in and have bone marrow tests to determine that the cancer is not in her bones. Chicago’s tests were negative so we need to ensure that NY has the same results. Due to the fact that we are running so late we will most likely be impatient (lucky us) ! Monday we will begin radiation and a dose of Chemo for 5 days. I’ll keep everyone posted towards the end of next week. Thanks again for everyones support and prayers.
We flew into Chicago last night from our consultation with Dr. Krammer in NY. The meeting lasted 4 hours and I met with everyone on the team. After long discussions and an evaluation of Paris it was decided that the best treatment option for Paris’ long term health and independent living would be that we would do focal radiation to the specific area at a low dose of 20 grey over a 4 week period beginning on Monday. They felt that this is a low dose leaving little side affects that would only be detected by a neurological test, but nothing that would be noticed by everyday people. They have never performed focal radiaiton on an infant having neuroblastoma but with their expertise they feel that they can give low doses of radiation and increase the number of antibody therapy given to componsate for the typically protocal of crainal/spinal radiation. Paris would be sedated daily and given 10 minutes of direct radiation to her cerebullum. The first week in NY would require preparation including a head immobilizer, putting in a port for future Chemo treatments and routine blood draws to determine counts/possible transfusions. This is the protocal and seen as the best and only possibility for survival. If we stray from the protocal there has been no known survivors.
If we did not agree to this option, we would greatly risk the possibility of multiple lesions due to free floating cells spreading to the brain that ultimately be inoperable.
Dr. Krammer infomed me that there are 500 documented cased of Neuroblastoma in the US yearly, 2/3 of those children are toddlers and older with advanced stage 4 cancer. Out of 500 only 50 are infants born with Neuroblastoma like Paris. However Pairs is the ONLY 1 documented infant case born with Neuroblastoma, with negative MNIC (meaning not high risk) at a stage 3 cancer that developed an aggressive caner in her cerebeullum. The doctors are baffled by this becuase there is NONE to compare statistics too in her situation.
Paris will be able to receive Chemo in Chicago after radiation has been given in NY. The plan will then be, to return to NY for Antibody treatment.
As always, thanks again for everyones ongoing support and prayers.
Ralph, Lauren & Paris