The Strickland Family Blog

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.

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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.

Thanks again for everyones support and prayers.

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)…  

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Paris recovers day after surgery.