The Strickland Family Blog

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.

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.

We have completed week 1 and are now into week 2.  Paris has been doing well through this whole treatment in NY.  She has had a few of the symptoms from Chemo and radiation (fatigue and diarrhea) but nothing too bad.  The best news that we got is that the bone marrow tests showed no sign of disease in the bones or marrow, meaning one less step of treatment in the future, and ultimately a better outcome for Paris.

Her blood counts are good higher than 8.0, meaning no blood transfusions needed.  We thought that she would need a transfusion by today but they were 9.2 (nothing is of the norm with her)  So she got a break.

Shes standing for seconds by herself, saying all types of words and still so active.

As of now the time-line looks like we should be coming home the week of Thanksgiving to start treatment in Chicago December 1st for 1 intense week of chemo and 3 weeks of isolation either at home or in the hospital and then be back in NY for 3 weeks in January (date not yet determined) for scans (depending on the scan results either more chemo, or the antibody treatment)  Its so hard to plan, because there are so many different possibilities.  Her treatment plan is contingent on so many things such as fever, infection, affects from Chemo, common colds, response to Chemo, possibility of relapse etc..  Dr. Kramer says she can’t plan past the 3 weeks in January.  But says that Paris looks good and is responding well to treatment now (she needs to remind me everyday to take it 1 day at a time).

Thanks again for your thought 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.