The Strickland Family Blog

Hello everyone,
Paris had surgery yesterday, March 15, 2011 at Childrens Memorial Hospital to place growing rods along her spine. We arrived at the hospital at 6am and I took  her back at 8:20.  She fell asleep quickly through the cherry flavored gas that filled her little mask.  I walked away debating with myself; questioning and debating “am I or am I not doing the right thing”.  I just kept telling myself all the factors that favor doing it now and every specialist had recommend it to avoid a more significant curve and ultimately to avoid a permanant deformity.   The thought of surgery near the spine just overwhelmed my mind with the what if something goes wrong and the decision I made to help her actually risks her ability to be mobile and causes her not to be able to walk.   The thought of being just one nerve away from making a mistake, the thought of this is the first surgery that is not the removal of a tumor, the thought that I actually had time to plan this surgery rather than be told ” we found a tumor and tomorrow we are going to have surgery to remove it leaving me no time to process it-just react.  So as I left her with a million thoughts racing in my mind as I walked 2 feet down the hallway I reached the waiting room and met my family who surrounded Ralph and I.  The  4-6 hour wait began.  Tick tock…tick tock…have you ever noticed that the time moves so slow when your waiting for something.    I received the first call at 10:20 which said that they made the first incision and that the spine was exposed.  The OR nurse said that she was fine and asked if I had any questions.  The calls are similar to a secret service call- your on the phone for less that 1 minute given a brief update and a confirmation that they will call you back.  At 1:04 I received the 2nd call that said that they were placing the hardware (screws and plates) and at 3:08 got the 3rd call that said they were placing the rods and that it would be another 2 hours to complete.  The 3rd phone call indicatetd that her nerve monitoring throughout the process did not indicate anything unusual during surgery.  The surgeon called us at 5:15 and said that she was recovering in ICU and that the surgery went well with no complications.  He noticed an immediate improvement approximately 20-30 degrees (I think he was surprised himself), which was unexpected as he said during our consultation the week before not to expect to notice any changes right away that it would be a slow progress slightly noticable every 6 months when they adjust the rods.  Needless to say it was a long 10 hours.  He changed his placement ideas once he had her spine exposed.  He decided to shave off some of her own unneeded vertebrae to use as bone graphing material to sotter the rods to ensure a secure placement in addition to artificial bone which added to the surgery time.
Paris looks great, moving her legs/toes and is in ICU and recovering on morphine every 10  minutes, watching disney movies, eating popsicles and is resting.  She has commented that “her back has an ouchie” but then doses back to sleep as she pushes the pain button.  They will do an X ray to determine exactly how much of an improvement there was later this week.
Paris will be inpatient for another 4-5 days and have to wear the TLSO brace for stability and protection.  The team will assess her and Im sure I’ll get a list of restrictions.  She will then have the rods adjusted every 6 months to expand her spine to hopefully a even more straighter degree.
Thanks for everyones thoughts and prayers….once again she came through with the best possible outcome.

Hello everyone,

I just wanted to give you all an update on Paris as we have decided to go ahead with another much needed surgery to place growing rods in attempts to correct her spine.  She will undergo adjustments every 6 months to improve the curve approx. 20 degrees over a span of 4-5 years ( a slow process) from tumor impact upon diagnosis.  Her surgery date is scheduled for Tuesday March 15 here in Chicago at Childrens.  The surgery will be between 4-6 hours and the approximate recovery time is 5 days inpatient and 3 weeks to fully recover.  Curves to her degree are usually seen in older individuals, but since hers is very significant (56 degrees) therefore needs to be corrected before the bones harden and it causes a permanent deformity…plus I have to try to squeeze it in between our every 3 months scans.  Please keep Paris in your thoughts and prayers next week as she again faces another surgery.

More specific information about the surgery is below if interested to hear about the details ect…

We had Paris’ final consultation with the orthopedic surgeon yesterday evening and discussed the procedures regarding her upcoming surgery. The surgery is scheduled for March 15. She will have growing rods placed, allowing the spine to be expanded every 6 months rather than fuse together with a permanent rod. She will have titanium rods placed most likely inserted along through the muscle and will  most likely attached the screws ect.  to the ribs which will do downward and connect to the pelvic area, packing some bone to bone graph to fuse the screws so that they will be more solid in place.  However since she is so small he will have to decide exactly which method of connection works well when he is with her in surgery.  I think he is still unsure of how he wants to anchor the rods and trying to decide which way of connecting the devise is best for her.  Over all she will be inpatient for 4-5 days and then discharged. She is expected to have to wear a full time TLSO brace.  He said she will be sore, swollen and will be on pain medication but kids her age are very resilient as well.  He expects that she will be out of school approximately for 4 weeks after surgery; however that number is a generic time frame and will be determined by him more specifically after he assess her after the week to come after surgery and will advice on specific PT needs after surgery after he assesses her and determines her needs as well. Overall the surgery is another necessary step for Paris in attempts to correct her curve over time.  He anticipates that there will be an over improvement of 20 + degrees taking it from 56 to approx 32. He is unsure if we will see a noted change right away. She will go in every 6 months to have the rods adjusted and do this procedure until she is approximately 9, to then obtain the permanent rod to fuse the spine. The structure itself will be able to be felt and mildly seen underneath the skin. One concern is that the actual may break or crack over time. He compared it to a paperclip wiggling due to her being a normal active young child and if you bend it so much it becomes flimsly and can weaken which then would need to be replaced.  He stated that you may not even know the structure is cracked or weakened but would tell if she complained more of back pain or it arises on x ray.  This is why he stated that he would like her back braced with the TLSO for additional support and the area towards the bottom of the spine sottered with additional bone graphing material to better hold the screws and rods in place.  

Overall its not cancer related…so I said before I’ll take whatever comes.

Hello Everyone,

Happy New Year everyone.  I wanted to email you on Paris’ most recent scan results.  We were scheduled in New York January 4-7 for our routine 3 month scan work up.  Paris underwent a MRI of the brain/spine, MIBG injection and scan and Bone Marrows.  The results of the scan were stable, no new disease and the new spot that presented itself on the November 2010 follow up scan was still present but unchanged therefore they are still contributing it to being a blood vessel.  We were able to fly back using corporate angels which provided us with a private company jet, which was much better than flying commercial.  They will continue to monitor Paris every 3 months in New York.  Our next scan date will be sometime in April.

As of now, Paris continues to be on no treatment plan.  The tested her PHA levels to see if she is able to receive some of the vaccinations that she was never able to receive due to treatment at 10 days old. 

We continue private Physical Therapy once a week and she also receive PT support within the school environment due to her having an Individual Education Plan (IEP).

So now that the scans are stable we have to go ahead and plan for the corrective spine surgery which is the placement of the growing rods in attempts to improve the 56 degree curvature. We will do the surgery in Chicago because both specialists in Chicago and New York collaborated and agreed on the same plan for Paris. Doing th esurgery in Chicago will allow me to be closer to home, still work and have family support.  I have a consultation with the orthopedic surgeon Monday January 10 to finalize our surgery date, which will give Paris just enough time to recover and then jump right back into scan schedules.

Paris has started Pre-school in November 29 (exactly 2 years from the date of diagnosis) and loves beign in school.  She loves her classmates and teachers.  She loves being the helper at school.  Ive gotten reports that shes very social during snack time!  She’s very independent and wants to do everything her self.

I wanted to thank a very special group of girls from the that I met in New York who have followed Paris’ story and have decided to take on a fundraiser opportunities in honor of Paris scheduled in New York for January 28, 2011 and March 26, 2011.

As always please continue to think about all of the families who have lost their children to this disease and all who are currently going through treatment plans.

Please continue to view her website and leave comments at www.prayforparis.info

Lauren, Ralph and Paris

Hello everyone,

Happy Thanksgiving, this year I can say that we have been truly blessed with good health.  I wanted to update you on Paris’ recent follow up scan results.  6 weeks ago during Paris’ routine scan work up there was a new area that showed on the brain MRI scan specifically in the right frontal lobe portion of the brain.  There was debate if the area was new disease or a clotted blood vessel.  The team sent us home but wanted us to re-image in 6 weeks to determine if the area had changed.  6 weeks happened to fall the day after Paris’s 3rd birthday.  We were blessed to be home to celebrate her birthday with all of our friends and family! The next day Paris and I boarded the plane and arrived in NY for a MRI of the brain.  The image resulted that the area in question is still present, however it has not changed and resembles more of a vessel rather than disease.  Needless to say this will be another area that the team will be watching very closely for future scans.  I am scheduled to again do the 3 month scan work up in January as this scan was just and “added bonus scan” and not a replacement scan.   I am able to be home for the Thanksgiving holiday, and Christmas holiday.   Paris is scheduled to start preschool Monday November 29 and she is all ready for school.  She is able to demonstrate to anyone who will watch that she can “flip” her backpack on all by herself! 

I am most thankful for good health this Thanksgiving as it is a small thing that is often taken for granted.  Please continue to pray for all of the families that are still in treatment, or have lost a loved one to this disease.
Ralph, Lauren and Paris

Hello Everyone,

Paris and I recently returned from our 3 month follow up scans in NY (October 3-October 8).  Paris had a MRI of brain, MRI spine MIBG injection and scan, bone marrows and urine collection. 

After gathering my thoughts I am able to post exactly what is going on with detail.

The MRI of spine is stable, the area by T10 is unchanged.  The MIBG is negative, all which is good. 

The outcome of the MRI of the brain revealved that there is an enhancement in the parietal lobe (right side of the brain) with a large adjacent vien identified most likely a large thrombosis (blood clot) or leptomeningeal enhancement (swelling of the layer of tissue lining within the brain). This finding was not present on any of the previous scans.

SO what does that mean when I analyze it at great length…… There are 2 possiblities.  The report indicates there is a linear enhancement in the parietal lobe (right side of the brain) that may be reflective of a thrombosis (a blood clot) or leptomeningeal enhancement (swelling of tissue lining).  The neurosurgeoon and oncology team most likely believes that the area is enhanced from an enlarged clotted blood vessel, however since Paris has had neuroblastoma in the brain in the past they can not rule out the possibility of early neuroblastoma.

Normal every day healthy people can have a small thrombosis or leptomeningeal ehancement and never even know it and it would never cause a problem.  However in Paris’ case any area that shows enhancement is reason for concern.  The team can speculate that the thrombosis or leptomeningeal enhancement may have been caused by infection (which is highly unlikely), an inflamed blood vessel that may have just developed a blood clot, or presented due to the large amount of chemo and radiation that she has endured over time could have cause the proposed/possibe clot.

Some factors that make me feel somewhat at ease are that Paris’ urine markers were fine, and there was no uptake or light up on MIBG scan to detect disease (however on the other hand, the area could be so small that it didn’t pick it up on the MIBG scan), plus the oncology team felt comfotable sending us home for 2 months.  If they thought that it was neuroblastoma they would have kept us in NY and we would have began to devise a treatment plan and begin treatment.  When I asked them on a scale of 1-10 how worried about this area were they they responded 1. 

When I weigh my pros and cons regarding the area more leads to the outcome of a clotted blood vessel, but to be safe the team wants to re-scan with a more advanced MRI of the brain in 2 months.  My initial reaction was if the area of uptake is really neuroblastoma I don’t want to wait 2 months to scan, in fear that the area will spread at a rapid rate, as neuroblastoma is an aggressive cancer and at this time clinical treatment for brain relapse is limited.  We have already completed 5 cycles (210) days of oral chemo (Temodar) and we have 1 dose left of antibody 8H9.  On the other hand if I repeat the MRI scan too early there most likely won’t be any change…. SO many decisions and SO many possibilities and NO concrete answers- after consultations- just your best judegment and intuitution.

At this point of time, I’m not extremely worried yet.  Im staying positive.  Ive gotten much worse news over the past 2 years so this is just a little set back and may not even be anything.    

SO what to do…. happy medium…. I will fly out with Paris in 6 weeks to repeat the MRI brain scan on more advance machinery.  If that area remains stable I will fly back out to NY in January for the rest of the scans for the next 3 month work up which would include a MRI of spine, MIBG injection/scan, CT scan, unrine and bone marrows.

If all that clears in January then I will have to schedule Paris spinal surgery with the orthopedic surgeon.  Both specialists in Chicago and NY recommend placement of growth/growing rods.  Growing rods are not permanent, allowing the bones grow and expand, in addition to aide in straighting out her spine by at least 20 degrees.  Her curve is very significant; 56 degrees.   Placing the growing rods will not fix the problem, however it will significantlly make it better- to about 36 degrees.  These metal rods would be placed and surgically adjusted every 6 months.  The structures usually last for 2 years and then need to be replaced.  She is very active so the main risk is that the rods tend to break over time, meaning that an entire new structure would have to be surgically implanted. 

If I do not place the growing rods her back will permanetly curved and fused which will cause a serve deformity.  The curve over time will continue to press against her lung which will down the line will cause breathing problems not being able to expand her lungs to full capicity. 

SO… that surgery is a must and it will be schedued in the near future, possibly January assuming the scans clear over the next few months.  I just need to decide where to perform the surgery; in New York or Chicago.  Where I have the surgery greatly depends on where Paris is regarding treatment.

Overall Paris looks great, and I have the next 6 weeks to enjoy every minute of life.  I have tons of pictures of her on Face Book and will post some new ones on the website.

As always thank you so much for your ongoing thoughts, concerns and prayers.  Please continue to keep all the families and children batteling this disease in your thoughts as well as those that have earned their wings.

Lauren, Ralph and Paris

www.prayforparis.info

Hello Everyone,

We flew to New York this past week for routine scans where they did a MRI of the brain & spine, CT scan, MIBG injection and scan, urine collection and bone marrows.  The scans looked good and we are awaiting the final results but typically no news is good news.  We were able to enjoy New York a bit this time and did some sight seeing and enjoyed the nice weather.  The team recommended that Paris receive maintence treatment which includes low dose chemo Cytoxan and Rituxan to prevent HAMA from rising and then attempt to receive antibody 3F8.  Its a very difficulty decision to make as there are many components to consider such as her heart condition and her immune system and over all that it is not the “save all treatment”  Ralph and I feel that she is finally given a chance to be a “normal” kid and enjoy life to the fullest, therefore at this point we will continue to have chosen to receive no treatment and re-scan again in October.  If Paris’ scans determined that there was a need rather than just to preventively treat we would do whatever in a heartbeat, but at this point in time we think that Paris deserves to just be a kid and get a break.  We will battle what may come when it comes-if it should come and know that if there is a reoccurance its not because we didnt do the preventitive treatment.  We are aware of the fact they we can relapse at any time and can re-enter the harsh world of treatment at any time.  We are going with our gut and our gut says its not the right time for us to do this. 
Please continue to think about and pray for the families that are currently in treatment or those who have recently lost a loved one.

www.prayforparis.info

Hello everyone,

Its been a while, and typically that means no news has been good news.  We enjoyed our 3 months (January to April) at home and doing the “normal” every day things, with the exception of here and there follow up and routine care.  Paris went through some ear infecions, strep, and colds, which we will gladly delt with.  One major accomplishment that we endured was we completed 5 cycles of oral chemo (Temodar) on march 14!  Just to clarify 5 cycles means a total of 210 days of taking grape flavored chemo-so Im glad my little baby gets a break from that.  During our 3 months at home we learned of some difficult news as some of our little friends along the way had passed, which was especially hard for me to deal with as we were able to be at home.   She has gotten so big, its hard to think that we have been doing this for 2 years straight.  April approached quickly and we headed off to New York once again for our 3 month scans.  They again, by the grace of God came back clear, showing no evidence of disease.  We are now back at home, able to enjoy another 3 months of “normalcy”  Her hair is getting so long, but I refuse to cut it-we worked to hard for it.  I just keep telling her to push it out of her face or I usually clip it back.  She is talking like an adult and turning into a little character.  One new treatment plan that just began is the NB vaccine that some of our friends are fortunate enough to be part of.  Paris may be a canadate for this treatmetn plan as well if her next set of scans clear.  Time will tell…Gods in control of that.  We greatly appreciate your ongoing prayers, thoughts, emails, concerns, and support.  So we go on until July… and enjoy the days that we are given becuase we know first hand how valuable they are.  Until next time..stay strong everyone.

Hello everyone,

What a way to start 2010, we received the news that Paris’ MRI, CT and MIBG scan results were clear and showed NO EVIDENCE OF DISEASE!!!  We had the shortest trip to and from New York a total of 4 days!!!  We were expecting snow and to our surprise when we got off teh plane it was 45-50 degrees.  The Brain MRI indicated that Paris has a sinus infection, which can easily be taken care of and is the least of our worries.  She did very well throughout all of her scans, tests and bone marrows- a real trooper. 

We are glad to be back home where we can return to work, Paris can return to daycare and overall we can enjoy home for another 3 months.  We will return to New York in April for another set of scans.  Until then, we will continue to be as normal as possible and enjoy every minute with Paris.  Im sure she will keep us busy!!! 

Please continue to pray for good health as we continue Temodar which is a manitence chemo that Paris will take daily.  As always thank you for your thoughts, prayers and support.  It never fails to amaze me what the power of prayer can do.

Until April……

Lauren, Ralph and Paris

Hello everyone,

Its been a while since our last update, 3 months to be exact!  Paris has enjoyed being home since our last surgery in September.  Things have been wonderful other than our routine daily chemo (temodar) and routine weekly trips to the hospital for blood draws and infusions.  When I ask her how her day went she responds “today I got my ochies and I got a sticker”  Its that simple to her and just has become a normal part of her life.  Compared to everything thus far, I’ll take the maintence work gladly.  Home is a wonderful place to be.  She has gotten to be quite a character.  She talks up a storm and repeats everything.  She makes us laugh every day.  She continues to be bossy and demanding but we have determined that since thats all she really has control of though all of this that she can be as bossy as she wants.  She knows all of her letter names and sounds, numbers 1-11, shapes, colors, and she even has pretended to be a mommy to her baby doll.  She is so helpful around the house, she wants to clean up and put everything in her proper place.  I may be contributing to her minor OCD issues!!  She loves going to day care and talks about all of her friends.  She is getting so big, its amazing that she just turned 2 in November.  We had a wonderful birthday party, however the morning of she woke up and sure enough had an ear infection.  She was a trooper through it, to her compared to everything she has been through an ear infection is no big deal.  She has been able to enjoy Thanksgiving and now Christmas at home. 

Well its that time again and we are headed off to New York for our 3 month scans/work up, which consist of MRI of brain and spine, CT scan, bone marrow, blood and urine collections, and MIBG scans.  The MRI is the main scan as it specifically looks closely at the areas where tumor was present and that previously had radiation and surgery.  Thank God its scheduled for the first day.  We should know results right away so at least we wont be as worried  for the entire week.  I will definately keep you posted as we learn the resuls of the scans.  Please keep Paris in your thought and prayers as we scan again.  As always we hope for the best that we can quickly return home and enjoy another 3 months of calmness, but are prepared for the worst as it can happen at any time.  We just continue to be grateful for the time that we have.  Have a very happy holiday.  We welcome you to check her site and post comments there as we enjoy reading them.

Please also continue to remember all of the families that have lost someone this holiday season.  I can only imagine the strength it takes to go though the days, especially the holidays without your loved ones.

Ralph, Lauren and Paris Strickland

www.prayforparis.info