The Strickland Family Blog

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.

We flew into Chicago last night from our consultation with Dr. Krammer in NY.  The meeting lasted 4 hours and I met with everyone on the team.  After long discussions and an evaluation of Paris it was decided that the best treatment option for Paris’ long term health and independent living would be that we would do focal radiation to the specific area at a low dose of 20 grey over a 4 week period beginning on Monday.   They felt that this is a low dose leaving little side affects that would only be detected by a neurological test, but nothing that would be noticed by everyday people.  They have never performed focal radiaiton on an infant having neuroblastoma but with their expertise they feel that they can give low doses of radiation and increase the number of antibody therapy given to componsate for the typically protocal of crainal/spinal radiation.  Paris would be sedated daily and given 10 minutes of direct radiation to her cerebullum.  The first week in NY would require preparation including a head immobilizer, putting in a port for future Chemo treatments and routine blood draws to determine counts/possible transfusions. This is the protocal and seen as the best and only possibility for survival. If we stray from the protocal there has been no known survivors.

If we did not agree to this option, we would greatly risk the possibility of multiple lesions due to free floating cells spreading to the brain that ultimately be inoperable.

Dr. Krammer infomed me that there are 500 documented cased of Neuroblastoma in the US yearly, 2/3 of those children are toddlers and older with advanced stage 4 cancer.  Out of 500 only 50 are infants born with Neuroblastoma like Paris.  However Pairs is the ONLY 1 documented infant case born with Neuroblastoma, with negative MNIC (meaning not high risk) at a stage 3 cancer that developed an aggressive caner in her cerebeullum.  The doctors are baffled by this becuase there is NONE to compare statistics too in her situation.

Paris will be able to receive Chemo in Chicago after radiation has been given in NY. The plan will then be, to return to NY for Antibody treatment.  

As always, thanks again for everyones ongoing support and prayers.

Ralph, Lauren & Paris

During the past week I have been at Children’s Memorial Hospital undergoing scans (MRI, CT, X-Ray, Bone Marrow puncture tests and MIBG scans).  Days have been a very busy and long.  Paris was sedated daily.  They used all of her veins since she no loner has her central line and had to use a IV over night leaving her with a severe rash/hives because she is allergic to tegadurm and sorbaview (adhesives) but we didn’t have a choice because all of her veins in her arms, hands and feet were blown at the time.

The tests resulted thus far that the less than 1 cm growth from the residual tissue most likely is neuroblastoma.  It was hidden by her liver which caused the MIBG scan not to light up in that area but because the MIBG confirmed that it has spread to her cerebellum (3 cm), the part of the brain that controls movement, balance, coordination  and motor control it is a high probability that it is in the central location as well.   At this time the tumor is just resting against it which is why she is still moving, crawling and standing just fine with no symptoms.  If she begins to exhibit symptoms such as twitching, jerking unable to move her legs/feet then they will implement a shunt to relieve the pressure that the tumor is causing.  So far so good as of now.

They needed to confirm that no other parts were affected which is why they conducted a MRI of the brain and a whole body CT scan.  We have not yet received those results.

The final test was the bone marrow, where they needed to remove a portion of her hip bone from the right and left side to determine if the cancer has spread to her bones.  last time it didn’t so thats what I am hoping for.  It takes 3-4 days to test and dissect the bone so we should know something Thursday.

At this time the doctors honestly say that the percentage of kids with neuroblastoma is rare, the kids that have tumors hat return is even rarer after treatment and the kids that have them return in such an aggressive manner such as the brain is nearly next to none.

At this point she is a text book case.  They have only found 1 other similar case where a girl about a year old had stage 4 neuroblastoma and relapsed in the brain.  I’m not exactly sure what part of the brain but that is the only case that they have found that has been documented.

They have plans which are clinical trials, meaning that they are not definite protocols, medicine hat is still being tested to treat what has returned.  Basically we are making it up as we go along and hope that the clinical trial works.  The other problem is that since she has had chemo before to treat her 7 cm tumor her body is used to the chemo and wont respond positively to it again, so they need to use another treatment because the tumor is now more aggressive.

Based upon the girl that they found who was similar, they may use her as a protocol reference.  After doing much research myself and calling all of the top 10 cancer research hospitals in the country (MD Anderson’s, St Jude, mayo Clinic, Golisano Clinic of Rochester, City of Hope, Dana Farber, UIC, and Immerman Angels) along with the team at children’s, we have determined (without knowing all of the test results) that the best treatment option may be in New York at Sloan-Kettering.  They have 4 pediatric oncologists specializing in neuroblastoma.  They have used clinical trials including a new development using iodine 131 and antibodies 3F8.  They find tumor cells and carry tumor killing substances to neuroblastoma without harming the normal cells.  I’m not sure how this will work being that the brain has a blood brain barrier but according to the literature she is a candidate.

Treatment will be discussed later this week and we’ll go from there.  After hearing a bit of hope today, maybe NY has what we need.  We are willing to travel to where ever.  All I know is that she is strong and there are some possibilities available to us.

Thanks for listening, your prayers and your support.

Ralph, Lauren & Paris