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

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.

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

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

Hello everyone,

Thanks for being patient with me since its been a while that I sent an update.  Ralph and Paris just got home October 8 from New York after being gone for 1 month and a half.  I really missed them since it was literally the first time that I was away from Paris.  So needless to say Ive been spending most of my time with them.

I must say that Ralph did a wonderful job with Paris in New York.  Im glad that he was able to get to experience that time with her and deal with the crazy life of “non-stop”.  The plan for Paris is that we are off for 3 weeks so that she can recover from irenotecan and then on October 26 begin cycle 3 of temodar (oral chemo).  Assuming I can keep her out of the hospital and “healthy” we will re-scan either end of december or early january.  (fingers crossed).  As of after surgery on September 10 she was officially declared as NED No Evidence of Disease.  I just pray that this can continue for a while if not forever.  Live one day at a time…..

I returned back to work after 2 years and honestly it was easy to get back into the swing of thigs.  Things were really in perspective-the job I love really became seconday and what didn’t get done at work stayed at work for the next day.  Im out the door at 3:30 and heading home to spend time with Paris. 

She started daycare again which she’s getting used to.  Who can blame her I basically dropped her off with a “stranger” and hoped she would do well.  She started Tuesday and it hasent been bad and she seems to enjoy it, she seems very happy and carryovers songs from that specific day.  Ms. Diane really cares for Paris so I know shes in good hands.

She’s starting Physical therapy again tomorrow.  She remembers Lisa and cant wait to see her again.  Hopefully this walking thing will come quickly.  Surgery caused us to have a little set back so we are starting from square one again.  Shes taking 13-20 steps independently so I am very happy about that.  We will continue to work on it.

When you think of Paris think of the word DIVA.  Shes definately earned that title.  Shes a bit bossy but we are calling it strong willed.  We all agree shes earned that right.

Shes talking up a storm and saying exactly whats on her mind, which is a good/bad thing.  Dont feel offended if she abruptly says she doesnt like you.  She is doing great with speech and can say 5-6 words utterances.  I think she knows too many words for her own good.  Its nice to hear her speak and hear how her little voice is changing.

I cant believe shes almost 2.  It was just yesterday when we were trying to get her to 2.  Crazy how time flies.

I just want to end by saying that we think about all of the little angels that have earned their wings.  They hold a special place in our hearts. 

Stay strong…

Lauren, Ralph and Paris

The spot by the vena cava-benign (no cancer) which is great news.

The spot by T9 is considered GanglioNeuroblastoma-which is “treated Neuroblastoma and/or mature Neuroblastoma” meaning that the cells have responded to treatment, are present in their most mature form but still require treatment.  This is far better than receiving an active Neuroblastoma disgnosis/pathology.

So Ganglio comes in 2 forms Ganglio Neuroblastoma (mature cells that have been treated) or Ganglio Neuroma (benign Neuroblastoma-cancer free) we are right in the middle between Neuroblastoma and Ganglio Neuroma.  So 50% there to being hopefully cancer free- I’ll take it.

The team meets tomorrow to devise a treatment plan-Im thinking radiation to the spot if the area falls outside where she was last radiated and from what they are saying low dose chemo most likely irenotecan.  I asked abut high dose and they said most likely not due to the size of the tumor and shape that was removed-but the decisions will be finalized on Wednesday.

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