The Strickland Family Blog

This trip has been by far the most complicated, just because I think I have changed my flight at least 100 times by now-Jet Blue is getting tired of my calls! I thought that being on the 8H9 antibody would be very easy and my stay in New York would only be 2 weeks to receive the last 2 doses of antibody treatment, however again things have changed.  When we checked her platelets they were extremely low. When we began treatment they were 200 and have dropped to 15. Platelets determine if we are continuing antibody treatment 8H9 because it is linked with radiation and since they are below 50 we can not continue.  We will save the last 2 doses for the future (hopefully we will never need them).

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Things have been so busy since January 20th!

Paris was supposed to have the ommaya placed on January 20th for antibody treatment, however the surgery was canceled that morning.  Insurance approved the surgery and then canceled it the day of.  It was very frustrating because Paris was NPO all day.  Apparently, the way in which the claim was submitted and the individuals who were to process the certification number did not have all of the information, therefore they had to deny the approval.  The wording in claims is also very important, my insurance will not cover experimental/clinical trial treatment (which is what antibody is)…  

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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.

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.

Hello everyone,

WOW-this past week has really been the worst week thus far. Paris really became sick after the first day of treatment on Monday. The 3 doses of Chemo (carbo, temodar and irenotecan) for 5 straight days really affected her. A specific oral chemo temodar is a gel cap pill that children are usally able to swallow, however Paris’ age doesn’t help her so they have to mix the powder with apple juice but just enough to fill the syringe to ensure that she gets the correct dose. Well the first attempt was a disaster, as soon as it hit her mouth the taste was so potent that she threw everything up within seconds. They tried again a while later and it stayed down after many dry heives. On Tuesday we repeated the same thing. I finally said place a NG tube so that she wouldn’t tase it. She struggled for 25 minutes and then she pulled it out. We repeated it again and then she pulled it out at home later that night. We had to put another one in on Wednesday which she finally left alone and I pulled it out on Sunday. I also used it to give her zofran, a anti-nausa medication which has a horrible taste as well. This past week has been horrible, Paris constantly throwing up-everywhere-daily actually hourly, very tired and moody. Today Sunday was the first day that she had a burst of energy and no vomiting. She seems to be doing a bit better, hopefully it will continue for the next 3 weeks. She lost more weight down to about 14 1/2 pounds now. We again have at home nurse care twice a week to take blood counts and I access her port, give her all of the medication plus neupagen through her port daily (exactly the same as last year). The nurse called and asked if I had any questions and if I needed a refresher course -I just laughed… Unfortunately, I’m a pro, I told her.

We are loosing hair again but we are gaining teeth. Go figure!

Thanks again for the ongoing thoughts, prayers and support.

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 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