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…)
This trip has been by far the most complicated, just because I think I have changed my flight at least 100 times by now-Jet Blue is getting tired of my calls! I thought that being on the 8H9 antibody would be very easy and my stay in New York would only be 2 weeks to receive the last 2 doses of antibody treatment, however again things have changed. When we checked her platelets they were extremely low. When we began treatment they were 200 and have dropped to 15. Platelets determine if we are continuing antibody treatment 8H9 because it is linked with radiation and since they are below 50 we can not continue. We will save the last 2 doses for the future (hopefully we will never need them).
I received the results from the spine MRI, the areas of enhancement were compared to the last MRI scan that was done last month. The findings were that the enhancement areas remained the same, and one spot actually became smaller in size without treatment. The antibody 8H9 that Paris received did not affect these areas out side the spinal cranial fluid. They again resemble enhancement from post surgery and/or radiation, less likely from disease. They will continue to monitor those sites closely.
I am still waiting the results from the brain MRI but as it is often said around here-no news is good news so I would like to hope that that is the case for us. I will await the results and share them with you as soon as I know. The antibody 8H9 that Paris received does target the cranial/spinal fluid which hopefully will give us good results in the brain area.
Her platelets are low, when tested on Wednesday they were 40 and today they were 24 so they are dropping. A few possible reasons for this could be from the 8H9 treatment or because she has a bit of a cold, which could suppress her immune system.
Platelets determine if antibody 8H9 can continue because it is linked with radiation. If her platelets do not recover on her own then we will have to do antibody IV 3F8 which does not contain radiation and targets everything outside the cranial/spinal fluid. This type of antibody is much more painful than 8H9. It was on our list of treatment, so we would just be doing this step earlier than planned. The other 2 doses of 8H9 would be put on hold until her platelets recover.
Dr. Kramer would like to do bone marrow testing on Monday.
I’ll keep you updated but at this point all of this news is good. Thanks for all the prayers.
I was in clinic on Friday after I called everyone and obtained a copy of Paris’ report from her MRI brain/spine scan to read for myself. I noticed that on the report for the lumbar spine it had indicated that there was enhancement as stated most likely from post operation and radiation as stated, however then report also indicated that there was a discrete 1 x 0.6 cm enhancing nodule between T9 and T10. It states that the changes extend toward the neural foramen but do not enter the spinal fluid. The impression also tates posttherapeutic and new mild residual paravertebral disease. (in regular terms there is less than a centimeter of disease that they believe is still present according to the report in the spinal area) That was not relayed to me on Friday, possibly it is so small that they believe that it will disappear on its own and want to wait for changes so I sent the doctor an email questioning the report. A portion of my questions are indicated below…I will wait for a response and let you know..
I am glad to overall hear that the enhancement is only identified in the surgery sites and could be a result of post operative/radiation but just was concerned when the report identified dimentions and stated mild residual paravertebral disease.
Since this scan was compared to the one in January, whould I be correct that this nodule was not present before? Paris is scheudled to receive 8H9 in March. Am I correct in thinking that the antibody only affects the spinal fluid/canal, if this is the case and the nodule is located between vertebrae how will we approach treatment for that area. Would it be possible to intervene with something as she receives antibody? My concern is that eventually that nodule will enter the spinal canal, being that that area is the orginal tumor site.
We got the results today from Dr. Kramer and she stated that the MRI looks good and she was pleased with the results. She stated that there was enhancement in the sites that had post operation surgery. There were no other areas that indicated tumor other than the sites that had underwent surgery. The area resembles what she would expect post operation surgery enhancement to look like rather than tumor. I’m very excited about the results however always worry about the microscopic cells and possible active neuroblastoma within the area, but I’ll worry about that when I have too right now I have to take the positive information and take it for what it is, that it resembles post operation enhancement.
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.
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.
On Monday Paris will have her first brain surgery in attempts to remove the tumor. The surgery will be done at Childrens in Chicago rather than NY due to healing time and time constraints as a recent MRI indicated a slight change in size of the tumor, therefore we were admitted into the ER on Friday night and have been on watch over the weekend. So far so good. Paris is doing fine and will undergo a long surgery tomorrow. We ask that you pray that the tumor does not give the surgeon any surprizes as he is trying to remove what he feels is a moderate removal, that he is able to remove all that is visible and that paris will recover without complications.