Claire and Grandpa flew home Sunday. It was quite the eventful trip.

I'll start with a recap: Claire was supposed to get scans, including her PET, done at PCH before flying to MSK to start cycle 6 of chemo and immunotherapy. Instead, scans were done immediately after arriving in New York. That is when we found out that Claire's neuroblastoma is still active and the previous treatments weren't effective this time. Cancer is still active in both legs: Above the knee on both sides, and below the knee on her right. Claire had been experiencing leg pain and has had a hard time walking. It was also discovered that Claire had an ear infection and so she was treated with antibiotics for that. 

With the results in, the previous treatment plan was scrapped and immediate radiation was ordered for both legs.  This type of therapy uses photons and is like a very powerful X-ray.  There are risks to healthy tissue and organs, but medications are given to try to mitigate that as best as possible. For example, to protect the thyroid which is particularly sensitive to radiation, a preventative dose of potassium iodine is given.  Special care is also given to the skin in the area being treated as radiation can cause burns.  

After completing the radiation therapy, another round of scans were done. No new sites were found, and a decrease in uptake was reported in her active sites which was consistent with expectation after radiation.  She does still have cancer in all three locations.  There are consistent mentions of spots in Claire's lungs on scans, but they have remain unchanged and are believed to be from the pneumonias and infections Claire has suffered during treatment. They also always check Claire's brain and  skull closely since she has had previous disease there. Currently, all that appears normal with appropriate changes/healing consistent with Claire's overall diagnosis. This is very good news! Claire ended her stay at MSK with a platelet transfusion as her last labs showed she had dropped.

So now what? Claire is definitely in a new place with her diagnosis. She has never encountered disease that was unresponsive. Chemotherapy and immunotherapy/antibodies have been reasonably suspended for now. The current plan is to use the latest scans to see if Claire is a good candidate for MIBG therapy. If that acronym seems familiar, it is the scan used to detect neuroblastoma. What is the difference? Thanks for asking...

MIBG stands for Meta-Iodo-Benzyl-Guanidine.  This molecule is absorbed by neuroblastoma cells (and a few others). For testing, a low radioactive isotope of iodine (123) is given the day before the scan so the uptake sites "glow" in the imaging.  The same idea is used for MIGB therapy, but with a different isotope. Iodine 131 works the same way, but delivers much more radiation that lasts for a lot longer.  The good news is that kids usually tolerate the physical part of the process very well. The radiation is delivered directly into the cancer cells which is phenomenal. The treatment is administered via port or IV and takes about two hours. The downside is that the isotope has a half life of 8 days and more is given. The result is that this therapy can only be done in special rooms that are lined with lead so nobody is accidentally exposed to radiation. Kids stay in this room for several days after their treatment. Strict protocols are in place to handle all output from the child after treatment starts. Urine, stool, saliva, and even sweat will be radioactive. A catheter will be in place to be sure the radioactive urine is properly discarded. Parents can have limited access with precautions during the highest radiation times. They can remain close by and will have means of communicating with their child. As the radiation decreases, the time allowed with their child increases.  After being released, the child will still have higher than normal radiation emissions and will have special care instructions for a bit.  I will discuss the logistics more once Claire's treatment is outlined.

Tuesday there will a conference call to get exact times/dates/treatment outlined. In the meantime, send your love and prayers to Claire who is still recovering from the radiation treatment she already had on her legs.