The Strickland Family Blog

Hello everyone,It has been 42 days since Paris and I have been home! We have enjoyed every minute of it and have been keeping busy that I somewhat forgot that we are still dealing with Neuroblastoma. But all good things must come to an end and we are headed back to New York for scans. Fingers crossed and lots of prayers are needed for a positive outcome so that we can continue to enjoy every day without the constant medical stressors. When we left New York the plan was to place Paris on 5 cycles of Temodar which is an oral chemo agent. 5 cycles means 42 days on with 1 week break and then repeat for 10 months. On June 4, 2009 we started Temodar. It was compounded into liquid grape flavor and therefore the taste was masked. Overall she tolerated the 1mls daily well. we gave her the dose in the morning and then we went about our day. At first it was tricky to decide do we give it with or without food, morning vs night-but after a few trial and errors we figured it out. During the 42 days we went for weekly blood counts and her counts never dropped meaning no transfusions needed, she never got sick and her hair stayed in place.We enjoyed trips to the city to go to Shedd, museums, parks, playdates and oh yes physical therapy, which Paris loves (we go 3 times a week). We are still not walking yet but getting there. Maybe by her second birthday in a few months she will be running around. Shes really getting bigger, determined, strong willed (but I call it an attitude), and talkative.We have been really busy with playing catch up as well with medical decisions such as her heart condition such as the option for medication to regulate her heart to receive 3F8, combining chemotherapies such as temodar and accutane and overall insurance coverage, denials for treatments, working on insurance appeals,-the ongoing story of my life. So much work and always a time constraint. I sometimes feel like I’m neglecting Paris just to get her what she needs. Im always researching new treatments, faxing, checking emails, matching bills with EOB’s, talking to someone, writing letters or working some problem out.Sloan just announced 2 new treatment options so theres always something or options available if we should ever need them. I also attended the Neuroblastoma conference in Chicago and obtained so much more information there-very good but you can definitely say information overload.We started our second cycle of Temodar today July 23, 2009 and so far so good. So again we start 42 days. Hopefully it will continue to go well. I travel back to New York July 26-31 for scans. Every day we have something. MRI of Brain and Spine, CT, MIBG, PET and Bone Marrow aspirations. Hopefully she will do okay because again she must be sedated and remember we dont have a metaport so every day she will be stuck per IV. Oh give me strength for that, shes older, verbal, stronger and her cries are much louder.I will update you after everything is complete at the end of the week. Hopefully this trip will only be a week and nothing new will arise. Please continue to pray for clear scans and the strength to get through yet another scary time.As always thank you for your ongoing thoughts, prayers and concern. I will keep you updated.Lauren, Ralph and Paris.

This entry was posted on Thursday, July 23rd, 2009 at 5:30 pm and is filed under testing, treatment, Hospital. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.