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.

Paris and I made it to New York on January 1st.  We had a MRI scan on the 2nd of the brain and spine.  We have a CT of the chest, abdomen and pelvis on the 6th.  Depending on those results we may have surgery in the thorasic area on the 8th.  If the scans determine that there is enhancement due to post surgery, chemo and radiation then she will be declared “cancer free” at this time and ready for antibody treatment to target any free floating cells.  If there is enhancement due tumor, which will be decided when the scans from September to now are compared then surgery is needed.  It will be declared that there is tumor if the area has responded or changed based upon the chemo treatment she had received.  If the area stays the same in size and doesn’t change then it most likely is scar tissue.  

I’ll let you know as soon as I know.  Hopefully we will be ready for antibody.

Talk to you soon

***News from Dr. Kramer***

I just spoke with the doctors and they began by telling me that they had good news.  They reviewed the MRI scans that confirmed that the initial site in the thorasic area was in fact disease, however it was initially very small and now that Paris had gone through Chemo in December it even further decreased the enhancement site area to almost nothing.  Now they are consulting whether or not (risk vs benefit) to have surgery on the 8th because the area is so small.  They think that maybe the antibody will be enough rather than to put her through surgery.  The team will schedule surgery for the ommaya and start antibody (8H9).  This is a different antibody than what I had researched.  I had assumed that we would be doing 3F8.  Another option is to keep the surgery date to remove what is left in the thorasic area and after she recovers begin antibody. Either way we are beginning our first cycle of antibody !!!  For now they have determined that the area in the brain is enhancement due to post surgery and radiation.  They will continue to watch the area closely.  Paris is doing well here at the house.

When I gather more information I will let everyone know.

Thanks again for the ongoing support, thoughts and prayers.

Everything has been so busy at the hospital….We will continue to be here for the remainder of the month, in isolation. 

We arrived due to fevers and Paris being neutropenic.  It somewhat was expected due to her receiving the dose and type of Chemo which was expected to wipe out her immune system.  Since there are germs and bacteria a around us, Paris was just prone to getting sick, where the average person can fight off the every day exposure to bacteria. Her blood culture determined that she had bacteria in her blood (strepneuvo) which typically could be fought off by kids that have had immunizations and who haven’t just received Chemo.  She was given antibiotics but it was not reducing the fevers, so they determined that the bacteria had infected the actual port.

The infectious disease team determined that the port was infected since it was a foreign object in her body the bacteria latched on to the port requiring it to be re moved.  We had surgery yesterday to remove it so now she is recovering from that, typicaly it would be considered a minor surgery however since she syill has no immune system and very low white bood counts she is prone to infection and longer time of recovery.  Since the port was removed she has 2 IVs that are been used to infuse now 4 different antiobiotics to treat the remaining infection.

We have had a total of 10 blood/platelet transfusions, which were needed to help re-produce more blood cells and white blood cells.  Platelets are given about twice a day to boost her system, as soon as her body absorbs them they quickly get used.  She was up to 75,000 but then dropped to 34,000.  We need to keep her above 50,000.  Her red blood cells are maintaining above 8, yesterday they were 11 The white blood cells are beginning to form, called monocytes, which were 2.0 classifying her still as neutropenic.

Her stomach is swollen and extended, measuring 42cm which causes pressure to her lungs making it difficult to breath.  We needed oxygen to aide her breathing and through X rays and ultra sounds it was determined that she may have typhlitis where the lining of the large intestine irritated, causing her diaherra and pain.  They explained that the harsh Chemo affected the lining of the organ and with time, antibiotics and increase of white blood cells the swelling should go down and she should be back to normal .

She continues to have fevers, and it just seems as if Paris is still not getting any better.  Over all the doctors keep re-assuring me that whatever she has can be treated, it may just take a while depending on how quickly her immune system which will greatly help the situation.  We are scheduled to return to New York on January 1, however the date may change due to Paris and her recovery time.

Thank you so much for continuing to think and pray for Paris, we truly appreciate it

Thanks again for the ongoing thoughts, prayers and support.

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