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.

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)…  

(more…)

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.

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.