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.
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.
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.
The placement of the ommaya went very well and Paris is doing great! She touched her head and noticed a bump and hasnt touched it since. It looks as if she bumped her head and has a bruise. Once hair comes in you wont even notice it. It is permanent, and never comes out, unless it severely interferes/bothers her in the future. They kept us for 24 hours and did a CT to ensure proper placement and then released us. We go back in 7-10 days to get the stitches removed. We went today for the CFS (Flow Study) where they inject dye to ensure that when it is time for antibody it will flow properly. The dye injection was ordered through FedEx and was supposed to arrive by 1 but didnt arrive until 3. Paris was NPO again and not happy. A PET scan was conducted and she’ll have her second one tomorrow. After that we are on a break from the hospital.
Our next appointment will be February 17th where they will insert a Luke Line for stem cell harvest. She will also have an MRI of the brain and spine, needless to say I will be nervous! Lets just continue to pray for a clear scan, hopefully no new spots. Her counts are coming back giving her an appetite and energy! She is eating everything from broccoli, strawberries, mac and cheese and pizza. We went to an event hosted by the New York Rangers. The players were very nice and signed hockey sticks for the kids. The kids menu was mac and cheese, chicken finders but she wanted the adult menu which was steak and mashed potatoes! She went from 6.5 kilos to 6.8 kilos in just 5
days! Our first antibody treatment (8H9) is scheduled for march 3, followed by scans on the 4th and 5th. The second antibody treatment is scheduled for March 17th.
Overall she is doing well. She started to crawl and pull herself up again! She has energy to play and she talks
up a storm. She is very determined and demanding, when she is NPO she will repeat BaBa (bottle) a million times! It makes me crazy but shes very strong willed.
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)…
We will be having a silent auction benefit fundraiser hosted by Miricales from Mia. We hope everybody can make it, more information will follow. Visit www.prayforparis.info/fundraisers for more information.
Event Information
Event: Cupid’s Kisses - Fundraiser
Where: Dipolmat West 681 W. North Ave. in Elmhurst, IL. (Northwest corner of North Ave and Route 83)
When: February 7, 2009
Time: 7:30 p.m. to 11:30 p.m.
Tickets are $40.00 per person and can be purchased at:
