Update: Paris Scan Results October 2010
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