We arrived in New York without a problem and settled in seeing all of too many familiar faces. It was good to see everyone again, I just wish it wasnt at teh Ronald McDonald House or at the Hospital. (more…)
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