Month: May 2018

As most of you all know, Adam had his MIBG scan on May 9, and we finally received the results of this scan last week. The results of Adam’s scan showed that the cancer has receded and is no longer picked up by the scans. In other words, the visible active neuroblastoma cells have been killed! There may still be some cells remaining which are microscopic and thus not visible by scan.  Adam will still have to complete the eight rounds of chemotherapy since he is Stage  4,  and because they want to make sure that every single cancer cell is gone, but it looks like he is on the right track. Adam’s oncologist says that the cancer cells seem to be melting away. This is such wonderful news and we are SO happy for this good result.

To see the neuroblastoma in the liver, they will do a liver MRI at the end of treatment, and decide at that time if they need to do a biopsy of the lesions on his liver, or if they are confident that the neuroblastoma has been eradicated. He will also have an MRI of his abdomen, chest and pelvis area at the beginning of August. At that time Adam will also undergo another (and hopefully final) MIBG scan after cycle 8 of treatment is complete.

He finished round 5 of chemo last week, so only 3 rounds more to go! His appetite seems to be better these days, and he is slowly starting to gain weight. He’s becoming more and more mobile every day. It’s so nice to see him progressing in spite of all the setbacks. We are behind the “baby proofing” curve.

 

Adam’s MIBG scan went smoothly on Wednesday, and we’re expecting results by next Monday. We hope that this will show that the chemo has been working, and we’re on track. His oncologist also wanted to see whether the tumor in the bones behind his left eye is completely gone. This is the only way for them to tell. His counts have been low for over 2 weeks now and he’s taken a lot longer to recover this time around. The doctor says the chemo will have cumulative effects as therapy continues. Adam is expected to start his 5th chemo cycle next week.

We hope that over the next couple months, things will settle down a bit, and we can make a routine of sorts. With Hannah back at work we are learning to manage regular life and Adam’s care. We are now at a point where we have had a chance to reflect on the past few months. Never in a million years did we ever imagine we’d be in this situation. At times it has felt like a really bad dream that we would surely wake up from, at other times, the pain is very sharp and real. We have had many experiences we never expected, including receiving help from so many people. This process has been difficult, but it has been such a comfort to have so many people surrounding us with love, care, sympathy, and prayers. We wish we had the ability to thank each and every one of you for the support we have received from you all; our family and friends, and even from people we have never met before. From the bottom of our hearts, thank you for all the food and supplies that were brought to us in the hospital and delivered to our home, for the toys and snugly animals and homemade blankets and onesies, for the overwhelming generosity in financial giving, for the sharing of life experiences, for the emails and blog notes of encouragement, for the phone calls and text messages, for the visitations, and for the faithful daily, weekly, and continuing prayers. You have helped us through this time more than you know, and even more than we know. We have been brought to tears by your  overwhelming care and generosity.

Though our updates may not be as frequent going forward, this should mean that things have returned to a certain level of normalcy, and we’re doing ok. We will be sure to keep you updated if there are any major milestones.

With much love,

Hannah, Mark, and Adam

 

 

 

 

It’s been 1 week since Adam had his 4th chemo treatment. His eating has declined a bit but he still seems happy. He had a blood draw appointment on Tuesday and he did not need any blood transfusions. We will go back again on a Friday for another blood draw.

Next week, Adam will get another MIBG scan, to see how much of his cancer has gone away, and to ensure there is no new growth. This scan was originally done 3 months ago when he was first diagnosed, which will be used as the baseline for comparison. Again, he will need to be put to sleep during this procedure. Please pray for this scan, that there would be no complications with anesthesia, that the cancer has decreased significantly and there is no new growth.

In a few weeks he will have a hearing test, which also requires anesthesia, and then we hope no more such tests till after the 8th, and hopefully final round of chemo. The hearing test is done because one of the chemo side effects is potential for hearing loss.

Earlier this week, we received a letter from our insurance that home nursing has been approved! We were originally told it would not be approved because Adam is not homebound. However, we have yet to find a home nursing company that can provide pediatric home care and is local to Pasadena. Our care coordinator is diligently reaching out to different companies in hopes of finding one who can provide this service. Please pray that we would find a company soon.

Through all of this, Adam still remains the happiest boy.