I apologize if the following explanation is too technical, but it will help in understanding the glimmer of hope we received yesterday evening.
From the time Adam was diagnosed with neuroblastoma, the question of whether or not he was stage 4 (high risk) or 4s (intermediate risk) was an immediate question. For stage 4, the survival rate is based on a variety of factors, but roughly 50-60% and treatment is typically 18 months long. For 4s, the prognosis is much better, treatment is shorter, and the likelihood of the cancer recurring is lower. The only way to definitively identify which of these a tumor is, is to get a sample of the tumor and analyze it for a particular gene called the NMYC gene. If the sample is “NMYC amplified”, it is categorized as stage 4. It means that this particular gene is greatly multiplied, and thus the neuroblastoma is more aggressive requiring stronger treatments over a long period of time.
Since the first few days in the hospital, we have been under the impression that Adam is stage 4. The doctors looked at the prevalence of the neuroblastoma in his abdomen/liver, bone marrow, behind his eyes, and almost every bone in his body, and combined with the rapid deterioration since the onset of symptoms, told us that the chance of this being stage 4s was unlikely. Over the past 2 weeks since we’ve been transferred to CHLA, we’ve been waiting for the doctors to get samples of Adam’s bone marrow, and analyze it for the NMYC gene. The samples we had originally brought from CHOC were not adequate, and the process of getting other samples and analyzing them took some time. Yesterday evening we were told that the CHLA doctors did review the samples, and there is not an adequate amount of tumor for them to determine whether or not it is NMYC amplified, thus they will be proceeding with the biopsy next Monday. They did, however, mention that there was an indication that there’s a possibility it is not NMYC amplified. The details of this are even more technical, where the proteins, rather than the DNA was analyzed, but our doctor said that this, combined with how well Adam has responded to his first chemo treatment indicate that there is a chance he is not NMYC amplified. Although we will not know until after the biopsy has been done, this was our first time hearing this kind of positive possibility. We are definitely encouraged to hear this and are cautiously optimistic, but at the same time need to be prepared for either option. The next week will be one of anxious waiting, hoping, and praying.
Adam’s condition has been improving day by day. He has been taken off of most of his IV medications, and has been switched to oral meds, which are administered through his NG tube. He is being fed through the tube at night, and bottle fed during the day. His appetite has been limited, but today he showed more interest in eating. His abdomen has been shrinking, and his eye has been opening more, with his pupil possibly responding to light. His eye is still not tracking, and seems unresponsive to movement in front of it. He is off pain medication, but his blood pressure has been elevated as of 2 days ago, and he has had more trouble sleeping the last couple nights. His attentive doctors and nurses are closely monitoring him and adjusting treatment daily. We will be staying at the hospital till after the biopsy, and may possibly stay till after his 2nd round of chemo.
1) That Adam’s cancer would not be Stage 4 (high risk)
2) That his eye would continue to improve and he regain function
3) That his blood pressure would go down and that he would not require continuous medication to treat this
4) That he would be comfortable, get the sleep he needs, and begin eating more
5) That Hannah and I would not be anxious and be able to handle the waiting, the classes we need to take for home care, and all the ups and downs of each day
Here are some pictures of our happy boy: