Paris Scan Update July 2010
Friday, July 9th, 2010Hello Everyone,
Its been 3 months since my last update, I apologize but I’m glad and blessed to say that we have been consumed with living within the “normal” routine of every day life.
Paris is now 2 1/2 years old and time for us has really flew by. We cant believe how big she has gotten! I have posted new pictures of her on Facebook everytime she does something cute!
We took Paris to Disney where she met all of the princesses and now she officially thinks that she is one of them. She says her favorite is Cinderella, but I really think she likes Ariel and Belle too. We had a great time meeting all of the characters and walking around all of the parks especially Magic Kingdom.
Paris has been talking up a storm, answering sassy and acts like the boss of the house and to be honest I would have it no other way! Paris continues Physical Therapy twice a week which she is working very hard at. I can see her steps improve. She is able to walk around independently we are primarily focusing on balance, core/trunk strength and toning muscle.
A recent orthopedic appointment determined that Paris has a 52 degree curvature in her spine which is where the tumor orginated. We are going to be faced with the decision of back surgery to correct the curve. If it is left untreated Paris’ bones will harden and cause permanent damage as she gets older. The suggested plan is that we consider the placement of growth plates within the spinal cord area to make the area flexible as she continues to grow and then consider the placement of a metal rod before the age of 9.
Paris has been off of treatment for neuroblastoma since March 14, 2010. She continues her monthly finger sticks to check her blood work and receives IV sticks for her Pentamadine infusions until August.
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.
I am very aware that even though the scan results showed good signs this time that at any given time Paris can be swept into the world of neuroblastoma again and we can be faced with continued treatment.
Thanks so much for everyones continued thoughts, prayers and concerns. Talk to everyone again in October 
Lauren, Ralph and Paris