The Strickland Family Blog

Ralph and I arrived in New York and are staying at the Ronald McDonald House.  The house is nice and has alot of activities for the kids.  On Monday Paris was fitted for her radiation mask, Wednesday Paris had routine tests for pre-admission for surgery and today (Friday) we have been at Sloan Kettering since 6:30 am and its about 4pm now.  We were bumped due to an emergency surgery and have been waiting ever since.  The plan is to be admitted around 6pm, surgery will last about 2 hours and then she needs to be monitored.  Paris is NPO since yesterday night and is VERY UPSET!!!! I can say its been the worst that I have ever saw her.  Today we are to have the port put in and have bone marrow tests to determine that the cancer is not in her bones.  Chicago’s tests were negative so we need to ensure that NY has the same results.  Due to the fact that we are running so late we will most likely be impatient (lucky us) ! Monday we will begin radiation and a dose of Chemo for 5 days.  I’ll keep everyone posted towards the end of next week.  Thanks again for everyones support and prayers.

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

We will be flying to New York to meet with Dr. Krammer at Sloan Kettering on Tuesday October 21, 2008 to discuss focal radiation.  At this point the surgery (placement of ommaya and port) has been canceled at Childrens until we hear all of our options in New York.  Please continue to pray for Paris as well as to give us the strength to make the right decision to Paris.

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.

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