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.

Paris went into surgery at 9:30 am and everything was complete at around 7:30pm.  We consulted with the doctor after surgery and then waited until they finished up.  By the time they took her by ambulance across the street and settled her in it was close to 10pm  It was a very long day, but I am very glad to say that everything went extremely well.

The doctor was able to remove ALL of the tumor and stated that he continued to search around the areas.  He took biopsies of the liver and placed a central line and a port.  She only lost 50cc of blood, which was good.  After surgery he had stated that she jerked her arms and legs thinking that she had a seizer, but when tested through a scan there was no brain activity that indicated that.  According to him she woke up and was in shock causing her to rapidly move.  They continued to need to give her extra sedation during the night because she kept trying to wake up.  Since she has so much fight they think that they can remove the breathing tube today. They were worried about the movement in her legs because the purposely paralyzed her during surgery to prevent movement, which is why it takes a while to regain feeling.   Through out the night they checked movement in both her legs and feet and they are responding to touch!   She has again overcome major surgery number 3 with the best possibly situation possible, truly all because she has had so many people thinking and praying for her.

Overall Surgery went great, she made it through and is moving, she will just need a few days to heal and recover.  I believe that the next step will be to do a dose of radiation to the site because when they took biopsies of the area and examined it them, they saw that some of the area was dead tissue due to it just being affected by Chemo but there were also “active” neuroblastoma cells, meaning that the chance of reoccurrence it a possibility.

We are very bless ed and grateful. Thank you so, so, so, much.

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 underwent her first brain surgery yesterday.  The surgeon was able to successfully removed ALL of the visible tumor that was visible to the human eye, without damaging a significant part of the cerebellum.  The entire surgery lasted about 5 1/2 hours.  Under the situation this is the best news that we could have heard.  She will need to undergo physical therapy later in life to re-strengthen the left side, focusing on coordination.  She conquered the first of many steps and is doing fine.  She will have a MRI scan today to compare the first image to ensure that the tumor is gone.

She will undergo a minor surgery to insert an ommaya revisor in her brain to allow treatment of the antibody, and another surgery to insert a port in the chest area to allow chemotherapy after about 10 days after she recovers.  I believe that this will be done at Children’s in Chicago since the surgeons are familiar with her and she is already recovering there.

I will have more information regarding the exact treatment plan and duration later this week after numerous discussions with Children’s and Solan Kettering.

Thank you all so much for keeping Paris in your thoughts 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.