It has been almost two months since we updated, and we have been very busy during that time. After 5 days of infusions Persy finished the cycle of ICE chemotherapy on January 22nd. By the time we got home from the hospital late Sunday night, poor P was already beginning to feel bad. Over the next couple of days he was extremely nauseous and lethargic, unable to even get out of bed. After returning home from a clinic appointment on Wednesday the 25th, the nurse called to tell us that Persy’s sodium levels were very low and we needed to take him to the hospital immediately to be admitted. Unfortunately this is a known side effect of ifosfamide, one of the chemotherapy drugs P had received.
Although we hoped to be able to go back home, we knew that we were getting close to Persy’s nadir (drop in blood counts) and would most likely end up staying until his counts recovered. Sure enough by the next morning P’s ANC was already at zero, and by the afternoon he had spiked a fever which would have put us in the hospital anyway. Thankfully Persy’s blood cultures remained negative, and his fever resolved with tylenol. After a few days he slowly began to feel better, and the sparkle in his eyes returned. However, he was still dealing with nausea (unable to hold anything down for several days) and was also suffering from some very painful mucositis.
Typically when Persy has had a drop in blood counts due to chemotherapy in the past, his nadir (ANC of zero) has lasted anywhere from three to five days. For the particular dose of ICE chemo he received, the nadir can last much longer. Persy’s ANC remained at zero for a total of 11 days, and during this time he required multiple blood and platelet transfusions. On Sunday, February 5th, P’s counts finally rebounded and we were discharged from the hospital. This was the longest stay we have had in the hospital since Persy was first diagnosed in November 2021.
Needless to say, we were beyond grateful to be back at home, and just in time to celebrate. On February 10th, Kepler turned two, and we were so happy to all be together. P felt great all weekend and the boys got to enjoy some quality cousin time, which is always their favorite! The next weekend was filled with more love and laughter when the Pakenhams came to visit. Thanks to a very warm February in Jacksonville, we even took the kids to the beach one day, where they all had the best time. It’s clear that Persy is the happiest when he’s playing at the shoreline, and his happiness is truly contagious.
Sometime during all the fun we were having P came down with a little virus which caused some cold-like symptoms and at one point a fever, which sent us back to the hospital, per protocol. Since his ANC had rebounded a couple of weeks before that, he was not admitted. Although he was mostly feeling fine, P was still dealing with a lot of congestion and phlegm. As a result we ended up having to reschedule his MIBG scan to give him a little more time to recover.
On Thursday March 2nd we flew to New York once again. Persy had his MIBG scan on Friday, and we flew directly back home afterward. Over the weekend we received the results of the scan. Overall it was unchanged with no new growth, which means the chemo was successful in stopping the cancer from growing more. The previous MIBG scan had given P a curie score of 6 leading us to believe that the right clavicle might have cleared. However, according to this scan his score is actually 7, with the clavicle still lighting up. The report said that the score was most likely already 7 on the last scan, but for various reasons they were able to get a clearer, more accurate view this time.
In addition to these heavy results Persy began to have pain in his right leg, which seemed to reach its peak as we headed back to New York to begin a new round of treatment on Monday, March 6th. When we arrived at MSK that morning the pain had gotten so bad that P needed morphine just to get some relief. Although there is no way to be certain, we assume the pain was unfortunately being caused by the cancer.
For this cycle, Persy received a lower dose of ICE, the same chemotherapy he had just gotten. He also began a different immunotherapy called dinutuximab. For the first two days, P received only the chemotherapy. On day 3, he received the last chemo infusion and began his first immunotherapy infusion for this cycle. Like 3F8, dinutuximab can run the gamut in terms of side effects. However, they tend to be less sudden or severe, as it is given over a much longer period of time (10-20 hours). Due to the lengthy infusions it is administered inpatient, which means this was our first time being treated inpatient while away from home.
Like 3F8, the first infusion of dinutuximab can often be the most difficult as things have to be adjusted based on the patient’s individual reactions and responses. P had to endure quite a bit of pain during his first infusion, which was managed with several different medications. In addition to pain, the infusions caused multiple fevers and a nasty dry cough as well. They did get steadily easier throughout the week, but each one took well over 12 hours to complete, making it a very long four days. As soon as he finished up with the immunotherapy, P’s ANC dropped to zero and he began to have stomach aches, diarrhea, and mucositis, while continuing to spike fevers daily.
In addition to chemo and immunotherapy, Persy’s oncology team has decided to do a round of radiation on both of his legs. He had his first of five treatments on Monday, March 13th. For this treatment patients have to stay very still, so children P’s age usually require anesthesia. But Mama, Dada, and Emily (our awesome child life specialist) were confident that our boy could do the treatment without it. The first day always takes the longest and in this case it required Persy to lie still by himself in the x-ray room for over an hour. Mama and Dada were only able to go in and see him for a couple of minutes here and there and were also able to talk to him through a speaker. To say he was an absolute champion would be an understatement. He did everything that was asked of him and was as sweet as can be through the whole thing. As always P continues to be an example to us all, showing us how to persevere through unimaginable circumstances with positivity and grace. He will finish radiation on Friday, March 17th, and we will hopefully get to go back to Jacksonville after two long weeks away from home.
Although the past couple of months have been extremely difficult, they have also been a beautiful reminder of all of the love we have surrounding us. We are eternally grateful for friends, family, and strangers who have reached out to check on us, to pray for us, or to show their support in so many different ways. Above all else we are grateful for our own deepening faith, and we pray that the Lord will continue to use the inevitable hardships in life as opportunities to bring us all closer to Him.
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, for you know that the testing of your faith produces perseverance.
James 1:2-3
