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| The drive home from Comer after the very difficult cycle of Antibody Treatment #2. |
The doctors and nurses told them it was going to be a rough one, but it was far worse and more frightening than anyone expected.
"The combined and cumulative effect of the drugs gave us a neurological scare towards the end of the week. He became disoriented, was jittery and shaking, started hallucinating, and did not shut his eyes for over 24 hours. I would try to hold down his eyelids, but they wouldn’t stay closed. Then, the doctors came in on Friday morning (after both antibody and IL-2 infusions were complete) and told me that they wanted to do a brain scan. When I asked them what they were looking for they told me that they were looking for brain tumors. I don’t know what scared me more, hearing those words or watching him suffer. They told me that the antibodies seek out any remaining neuroblastoma cells and train the body to fight them, and the theory was that the antibodies may have found tumors that were affecting him neurologically. They decided to do a CT and then would follow up with an MRI if needed. The scan came back ok, thank God, so then we went into a wait and see pattern, waiting for these problems to resolve themselves." - Eleni
Kosta and Eleni agree that this Antibody Treatment that Theofanis received was far more frightening than chemo or either of the transplants. Things were happening to their son that no one expected or could explain. And when his adverse reaction to the antibodies did not go away after the infusions stopped, panic set in. And, Dr. Cohn was out of town....
Theofanis was admitted to Comer on Sunday night, March 25th, after a fantastic weekend. He was able to finally eat out, visit family, and serve in the Altar again on a major Feast Day -- the Annunciation of the Virgin Mary. In addition, March 25th is also Greek Independence Day so it was an even better gift to be able to be in church as a family. The plan for the week would be that the entire family would be together, given that the girls had Spring Break. So, the Yianas family reserved a suite at the Ronald McDonald House a few blocks away from Comer so that the girls could keep Theo company and the Kosta and Eleni could be close as the antibody and IL-2 would be infused together. The infusions began in earnest on Monday with the correct dosages administered, and Theo was able to tolerate everything very well. The kids kept busy and made crafts and played. Daddy brought in the Wii system from home so all the kids could play together and volunteers from the play room came up to visit and coordinate the craft building.
As the day wore on, Theo's temperature began to creep up despite the fact that he was getting Tylenol and Benadryl around the clock. His blood pressure was low and although this was expected, it was still something the residents had to address. He was given a blood transfusion Monday night to try and bring his blood pressure and hemoglobin levels up but his fever continued.
As the day wore on, Theo's temperature began to creep up despite the fact that he was getting Tylenol and Benadryl around the clock. His blood pressure was low and although this was expected, it was still something the residents had to address. He was given a blood transfusion Monday night to try and bring his blood pressure and hemoglobin levels up but his fever continued.
Tuesday tiredness set in and Theo slept most of the day. His fever continued and hit levels of 104 degrees F. The doctors offered to add Motrin and alternate it with the Tylenol every three hours. Once again, Theo was given Morphine in anticipation of the pain he would likely have with the antibody, and everyone seemed to attribute it to the fever and restlessness Theo had. Dr. Cohn came by and said that Theo was tolerating things well at this point. She mentioned that she was heading out of town to Children's Oncology Group meetings and would not be back until the next week. Dr. Cunningham would be the attending physician in her absence. For Sophia and Demetra, meanwhile, it was getting a little boring sitting around the hospital, especially since Theo was becoming increasingly tired from the effects of the morphine and antibody. The Yianas family's dear friends, the Tunneys, picked up the girls for an outing to the Lincoln Park Zoo while Kosta and Eleni stayed with their son. When the girls returned in the evening, Eleni took them to Ronald McDonald House as Kosta stayed with Theo overnight. Theo became even more restless and began to talk in his sleep. It didn't seem as though he was resting well, and it did not help to have the nurse coming in every three hours to wake him to take Tylenol or Motrin orally. He was also put on an antibiotic because of his continued fever while daily blood cultures were taken to ensure there was no bacterial infection causing his fever.
By Wednesday morning, Theofanis was a bit more comfortable as it seemed they found a good level of pain relief and his fever abated. However, he seemed more agitated. When his sisters came in for the day, he did not want to play with them much. The crafts volunteer came by and the children put together Easter crafts. Theo seemed disinterested in it and did not want to play Wii at all. He became visibly upset easily over small matters while interacting with Deme and Sophia. As the doctors rounded and came in to see Theo, Kosta let Dr. Cunningham know about Theo talking in his sleep the night before. Dr. Cunningham noted that that was not really a side effect of the therapy and it was dropped. It seemed to be categorized as something to be followed and to take a " wait and see" approach to it. Kosta saw more of this overnight Wednesday and it became concerning. Theo did not sleep well at all and was extremely restless, tossing and turning every few minutes.
On Thursday Theo started showing signs of a strange reaction. He was not himself and his personality changed considerably. He had no desire to play or do anything. Eleni and Kosta were told that the side effects for this therapy are unpredictable while he's getting infusions. Because the antibody is experimental in nature anyway, combining it with the IL-2 can cause side effects that are different with each cycle and with each day within the cycle. With this, the Yianas family were counting the hours until the infusions ended. The antibody ended at 10pm Thursday evening. The Yianases were relieved that it was over, yet, the IL-2 still had another twelve hours to go. Kosta took the girls to Ronald McDonald for their last night there, as they were to check out Friday morning. However, overnight Thursday Theo was not well and Eleni's account above of what transpired throughout the night led to the realization that something was very wrong.
Theofanis literally did not sleep overnight Thursday. His eyes would not close. They rolled back in his head as he tried to go to sleep and they would become cross-eyed as they danced around but they would not close. He was confused and did not know where he was or who was in the room. He was hallucinating, seeing people and things that were not there. He would grab in the air for things. Eleni became frightened and summoned the resident at about 3 am, who, in turn, brought in the fellow. The fellow then announced to Eleni at about 6:30 am that they would like to do an MRI, presumably to look for more neuroblastoma as the theory was that perhaps the disease metastasized to his brain. The fellow said that, after consulting with Dr. Cunningham, that it was the best thing to do about it. Eleni asked to contact Dr. Cohn and get her opinion on the matter. The fellow seemed shocked but Eleni insisted that only Dr. Cohn knew what would be best in this situation. Eleni then called Kosta and informed him of what was going on. Dr. Cunningham later came in and said after speaking with Dr. Cohn that the best thing to do was have a CT scan to rule out more neuroblastoma, but also rule out blood or other fluid buildup in the skull. They just did not want to miss anything.
Theofanis went down for a CT scan and Kosta and the girls met with them in the Radiology department at Comer. Theo seemed different. Theo would obviously not be discharged on Friday.
Theofanis literally did not sleep overnight Thursday. His eyes would not close. They rolled back in his head as he tried to go to sleep and they would become cross-eyed as they danced around but they would not close. He was confused and did not know where he was or who was in the room. He was hallucinating, seeing people and things that were not there. He would grab in the air for things. Eleni became frightened and summoned the resident at about 3 am, who, in turn, brought in the fellow. The fellow then announced to Eleni at about 6:30 am that they would like to do an MRI, presumably to look for more neuroblastoma as the theory was that perhaps the disease metastasized to his brain. The fellow said that, after consulting with Dr. Cunningham, that it was the best thing to do about it. Eleni asked to contact Dr. Cohn and get her opinion on the matter. The fellow seemed shocked but Eleni insisted that only Dr. Cohn knew what would be best in this situation. Eleni then called Kosta and informed him of what was going on. Dr. Cunningham later came in and said after speaking with Dr. Cohn that the best thing to do was have a CT scan to rule out more neuroblastoma, but also rule out blood or other fluid buildup in the skull. They just did not want to miss anything.
Theofanis went down for a CT scan and Kosta and the girls met with them in the Radiology department at Comer. Theo seemed different. Theo would obviously not be discharged on Friday.
On Saturday, Theo's left eye and left elbow experienced intense swelling. These were the areas of his original tumor sights, and they swelled up so badly that his left eye was sealed shut. Again, the doctors told Eleni and Kosta that the theory was that the antibodies were attracted to the matured ganglion cells that are still there. Theo slept the majority of the day and evening. It was still a restless sleep, though. Eleni had taken the girls home, as it became evident that it was unsettling for the girls to see their brother in this difficult state. They did visit briefly on Saturday night when they brought Daddy and Theofanis some dinner.
Finally, the hallucinations subsided on Sunday morning. And since the doctors saw improvement with the swelling, they decided to let him go home since his vitals were stable. He could barely walk, he was exhausted, and he still wanted to sleep. Obviously, he was not returning to school as planned.
For the next few days, Kosta and Eleni saw little improvement...His eye swelling went down, but he continued to have droopy eyes, would sometimes go cross-eyed, he could barely walk or raise his arms, he had tingling in his hands, pain in his legs, and he was fatigued and exhausted. Dr. Cohn would be returning from her trip on Tuesday and asked to see Theo on Wednesday morning.
So on Wednesday Dr. Cohn finally examined him herself, saw first hand these unusual side effects, and determined that he had a very serious, rare, and unusual neurological reaction to last week’s antibody treatment, causing neuropathy. She appeared worried and told Kosta and Eleni that she is considering terminating his treatment. She’s reached out to the Study Chair for advice and guidance. She also ordered an assessment by an opthamologist and and MRI that was done the same afternoon. Although the belief is that most of his symptoms should go away in a few weeks, she wanted to get a full neurological assessment. She also dismissed the theory that the antibodies caused the swelling on his original tumor sites because they were attacking the ganglio cells. She said the swelling was due to the radiation and fluid retention because of tissue sensititivity.
As the Yianases waited for the results of the opthomologist's exam and the MRI, Dr. Cohn was in constant contact with them. And, she decided that Theo cannot go on with the antibody treatment as per the full protocol. These are her thoughts: Firstly, only if Theo is at 100% in three weeks will she consider moving forward at all. Secondly, there is no way that treatment can continue at full antibody dose, and will certainly be dropped to 50% dose. Thirdly, Dr. Cohn will seek the advice of the study chairs at the COG, but even if they recommend to move forward with treatment, Dr. Cohn wants to sit down and discuss with Eleni and Kosta whether it's best to simply terminate treatment.
Over the next several days, the opthomologist results came in with news that there are no effects to the optic nerves. This made Dr. Cohn very happy. She was encouraged by knowing that there is no damage to the eyes or his vision. The MRI results, though, showed bilateral inflammation in the brain. And with this news, many of his symptoms were attributed to the swelling in his brain. The fact that the inflammation is bi-lateral is positive news that is reinforcing the belief that all the side effects he is experiencing should go away, though it will take weeks for Theo to fully recover. If inflammation was limited to one portion of his brain, it would infer that there was another very severe abnormality. Dr. Cohn also said the the neuroradiologist saw similar reactions to chemotherapy drugs and confirmed that symptoms eventually cleared up. Dr. Cohn also said that after consulting with the COG, the experts determined that it is very unusual for the antibodies to be the cause of the swelling, rather, they believe it was the IL-2 (interleuken) drug that caused it. She said that the antibody molecules are too large to penetrate the blood-brain barrier, and that the IL-2, which are smaller molecules are more likely to cross into the brain.
The doctors are still struggling to provide Eleni and Kosta with examples of other kids who have experienced this same severe neurological reaction to this antibody treatment. They continue to be told that what happened to Theo is very rare and unusual. And, they are told that they must continue to closely monitor him to see signs of slow improvement. The Yianases are obviously extremely worried and concerned, both short-term and long-term. And, when they heard Dr. Cohn say, "In my heart of hearts, I don't think Theo should continue with treatment," their thoughts have been racing from "Good. No more drugs. No more infusions. No more poison," to thoughts of "what's going to happen if he doesn't get the full dose of antibodies that's supposed to improve his event-free survival chances by 20%?"
Theo goes back for a check-up on Wednesday with Dr. Cohn. And Eleni and Kosta are extremely happy to report that over the weekend, Theofanis has started to show slight signs of improvement. His eyes look a little better. He started walking a little without assistance. And thankfully, he started to smile and laugh a little. He got out of the house a little, too.
WITH FAITH, LOVE AND PRAYER HE WILL WIN!
This is Holy Week for Greek Orthodox Christians. On Holy Easter we will celebrate the resurrection of Christ. During these most holy days, let's ask the Lord to grant strength and healing to our beloved warrior, Theofanis. Let's pray that God give wisdom to Theo's medical team to continue to give him the best care possible and to help Dr. Cohn, Kosta and Eleni make the best decision for Theo, so that he will grow up to live a very very long, healthy and happy life that is completely CANCER-FREE!
As the Yianases waited for the results of the opthomologist's exam and the MRI, Dr. Cohn was in constant contact with them. And, she decided that Theo cannot go on with the antibody treatment as per the full protocol. These are her thoughts: Firstly, only if Theo is at 100% in three weeks will she consider moving forward at all. Secondly, there is no way that treatment can continue at full antibody dose, and will certainly be dropped to 50% dose. Thirdly, Dr. Cohn will seek the advice of the study chairs at the COG, but even if they recommend to move forward with treatment, Dr. Cohn wants to sit down and discuss with Eleni and Kosta whether it's best to simply terminate treatment.
Over the next several days, the opthomologist results came in with news that there are no effects to the optic nerves. This made Dr. Cohn very happy. She was encouraged by knowing that there is no damage to the eyes or his vision. The MRI results, though, showed bilateral inflammation in the brain. And with this news, many of his symptoms were attributed to the swelling in his brain. The fact that the inflammation is bi-lateral is positive news that is reinforcing the belief that all the side effects he is experiencing should go away, though it will take weeks for Theo to fully recover. If inflammation was limited to one portion of his brain, it would infer that there was another very severe abnormality. Dr. Cohn also said the the neuroradiologist saw similar reactions to chemotherapy drugs and confirmed that symptoms eventually cleared up. Dr. Cohn also said that after consulting with the COG, the experts determined that it is very unusual for the antibodies to be the cause of the swelling, rather, they believe it was the IL-2 (interleuken) drug that caused it. She said that the antibody molecules are too large to penetrate the blood-brain barrier, and that the IL-2, which are smaller molecules are more likely to cross into the brain.
The doctors are still struggling to provide Eleni and Kosta with examples of other kids who have experienced this same severe neurological reaction to this antibody treatment. They continue to be told that what happened to Theo is very rare and unusual. And, they are told that they must continue to closely monitor him to see signs of slow improvement. The Yianases are obviously extremely worried and concerned, both short-term and long-term. And, when they heard Dr. Cohn say, "In my heart of hearts, I don't think Theo should continue with treatment," their thoughts have been racing from "Good. No more drugs. No more infusions. No more poison," to thoughts of "what's going to happen if he doesn't get the full dose of antibodies that's supposed to improve his event-free survival chances by 20%?"
Theo goes back for a check-up on Wednesday with Dr. Cohn. And Eleni and Kosta are extremely happy to report that over the weekend, Theofanis has started to show slight signs of improvement. His eyes look a little better. He started walking a little without assistance. And thankfully, he started to smile and laugh a little. He got out of the house a little, too.
WITH FAITH, LOVE AND PRAYER HE WILL WIN!
This is Holy Week for Greek Orthodox Christians. On Holy Easter we will celebrate the resurrection of Christ. During these most holy days, let's ask the Lord to grant strength and healing to our beloved warrior, Theofanis. Let's pray that God give wisdom to Theo's medical team to continue to give him the best care possible and to help Dr. Cohn, Kosta and Eleni make the best decision for Theo, so that he will grow up to live a very very long, healthy and happy life that is completely CANCER-FREE!
