This past week has involved a lot of R&R for Adam, but also he has had to redo some of the diagnostic tests that were done the first week of his hospital stay at another hospital. Unfortunately, the tumor sample, and the imaging scans were not adequate, so he had a repeat MIBG scan (full body, to determine location of neuroblastoma cells), and his primary tumor biopsy is scheduled for tomorrow, Monday, at 9:30 AM. The biopsy can be performed by a surgeon, involving either laproscopic (camera) surgery, or if the liver was being biopsied, the surgeon could perform it by eyesight. Our doctor’s preference (and ours) was to use interventional radiology to perform the biopsy instead. This involves using imaging guidance to insert a hollow needle into the primary tumor, and then using this “tunnel” to go in and grab samples of the tumor. This is the less invasive option, with lower bleeding risk, however, there is a small possibility that the tissue could be necrotic (dead) and not provide an adequate sample. This possibility was weighed against the invasiveness of a surgical biopsy, and we’ve decided to go the interventional radiology route. We have already consulted with the doctor who will be performing the procedure, so assuming Adam is healthy, it should all be done by noon time tomorrow.
Regarding Adam’s health, he appears to be improving daily. He seems to be pain free, his appetite is coming back, his immunity is coming back up, and he’s noticeably more active and talkative. The one area that still needs improvement is his platelet count, which is still low, meaning his body is not producing them on its own. In itself, this is not a factor that would require us to stay in the hospital, so the doctors are optimistic that we may be able to go home on Tuesday.
We are somewhat excited to be able to go home after nearly a month of hospital living, however, there are a lot of factors related to Adam’s care that are currently taken care of by the nurses and care providers, which will become our responsibility when we leave. Medication in particular is a big one. His NG tube has been very helpful in administering medication directly to his stomach without him having to open his mouth or taste it. The plan is to remove the NG tube prior to discharge, which means we will have to give all his medications by mouth. He is not the most cooperative kid when it comes to oral medications, so we shall see how successful we are. On the positive side, he won’t have an NG tube stuck down his throat and plastered to his face!
Even tho we may be discharged, we will most likely be back at CHLA within a few days, as his next round of chemo is due this Thursday, we don’t yet know if we’ll stay with that plan or delay a bit to give Adam (and us) a chance to recover more.
- That the biopsy would be without incident, and the sample would be viable
- Adam’s health would continue to improve
- The discharge and re admission would be smooth
- Mom and Dad would know how to take care of Adam at home
- Not mentioned in post- health insurance is a necessary hassle to deal with. And will have many ongoing issues to sort through
Here’s our boy back to tummy sleeping
Play time with Grandma and Grandpa
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:
Last night Adam had a fever. As a chemo patient, fevers are taken very seriously. A blood culture was taken to check for a blood infection, and so far it seems clear. He was given Tylenol to reduce the fever, and put on antibiotics as a preventative measure. This morning his temperature was back down within normal range. He didn’t eat much yesterday, and seemed to be in more discomfort. We are hoping that he will soon begin eating more by mouth to avoid tube or IV feeding.
He is currently having a scheduled bone scan done to give a clearer picture of the neuroblastoma in his bones. It will take about an hour. He’s being very calm all wrapped up in the machine.
Adam tolerated both chemo treatments last night, and slept fairly well. He is resting today, and will have another round of chemo tonight. He continues to need blood transfusions because his liver function is limited, but he is on less IV fluids, and eating a little more. “Child life” came by and set up a mobile for him and gave him a rattle that he played with for a while.
Adam responded well to the first type of drug that was used, but began deoxygenating and hyperventilating with the administration of the 2nd type of chemo drug. It has been stopped for now, and a chest X-ray ordered to make sure his lungs are clear. We are awaiting the decision of how to proceed.
We had long discussions with the Neuroblastoma specialist today. Adam will be receiving his first dose of chemo today due to the rapid rate at which his tumor is developing.
- The tumor would respond to treatment and relieve his breathing, digestion, and swelling.
- It has not been determined if he has elevated NMYC gene which would drastically affect the amount of treatment needed.
- His vision could be damaged in the long term if there is too much pressure on his optic nerve for an extended time. Please pray that the pressure would subside and his vision would return to normal.
Today Adam was administered an isotope which will allow a body scan to show all the areas of his body to which neuroblastoma cells have spread. The scan will take place tomorrow 2/7/18 at 8:30 AM. Once the scan is complete, we will transfer to CHLA to begin treatment.
Current prayer requests:
- Adam would sleep comfortably
- His blood levels would be normal so that the scan can be completed
- The hospital transfer would go smoothly, and treatment would begin promptly