Last week we traveled to New York to repeat Persy’s diagnostic scans including an MRI of the brain, MIBG scan of the entire body with CT, and bone marrow aspiration. We went in feeling hopeful and praying for there to be no evidence of disease. Unfortunately the results were not what we had hoped for.
As we were boarding our plane to fly back home on Friday we received a call from our doctor at MSK. He told us that the MIBG scan showed some new spots on Persy’s legs and arms. He explained that they most likely developed from microscopic disease still remaining in P’s body. He also let us know that due to this relapse the treatment plan would need to change so we would not be able to continue with the 5th cycle of HITS on Monday as planned.
Back in October when Persy was last scanned his curie score was a 1, with the right clavicle being the only area that still lit up on the MIBG scan. According to this most recent MIBG scan, his new curie score is a 6. There are 4 new spots on the legs (bilateral femur and bilateral tibia). There are also 2 new spots on his arms near his wrists (bilateral forearm/hand). The clavicle is no longer lighting up on the scan, which leads the doctors to believe that the radiation was successful. The MRI of the brain and the bone marrow aspiration were both clear with no evidence of disease.
The new treatment plan is to do one cycle of chemotherapy to hopefully clear the disease, rescan after a month, and then decide on the next steps. For the past 7 months we have been traveling to New York for each 3F8 treatment as a specially trained bedside team is required to administer it. However, we were able to coordinate this round of chemotherapy to take place at our home hospital here in Jacksonville.
For this cycle Persy will receive 3 different chemotherapy drugs known as ICE: ifosfamide, carboplatin, and etoposide. He has gotten etoposide a couple of times in the past, but the other two are new to him. These chemos are given inpatient over 5 days, and Persy received his first infusion for this cycle on Wednesday January 18th. In order to protect his body and avoid side effects he is on fluids and anti-nausea medicine around the clock, along with other medication to protect his bladder. As with all of the other heavier chemos he has had, we know that inevitably his blood counts will drop (usually about 10 days after the start of chemo), and we will be back in the hospital with neutropenia within a week of being discharged. This is simply the reality of childhood cancer, and one that has become all too “normal” for our family.
Even as we face all of this, Persy continues to be strong, happy, and resilient. He has been feeling great and has been full of energy and spunk. His appetite has come back and he has even been going through a little growth spurt. P is constantly amazing us (and everyone he sees) with his love of letters and languages. In addition to the English alphabet, he has managed to teach himself the Russian and Greek alphabets and is beginning to explore others. Above all else he remains his sweet, loving, happy self in the midst of everything he endures, and continues to lead the way for us all.
It is impossible to explain in words the depths of the pain we feel knowing that our boy will have to go through even more difficult treatments. We were just beginning to see the light at the end of the tunnel, and in many ways we feel like we’ve had all of the air sucked out of us. But at the same time we know that God is with us. He is with Persy, and He has been here all along. Although we can’t know the path that lies ahead of us, we have faith that it will lead to complete and total healing for our little warrior. We ask you all to continue to pray with us, asking the Lord to remove this burden of cancer from Persy so that he may live a long, healthy life doing God’s will.
Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17