The Strickland Family Blog

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.

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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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