Philippians 1:19 – For I know that for me this will turn out to salvation through your petition and the bountiful supply of the Spirit of Jesus Christ
Dear All,
It has been 6 months since Adam finished treatment. As planned, he is having another set of MIBG and MRI scans to ensure that the cancer remains gone. These scans will be done this week on Feb 13 and 15. We will post an update once we have received the results. We don’t anticipate any change, but are always a bit nervous.
Adam is doing great. He loves spending as much time outdoors as possible, and loves interacting with other kids.
Love Mark, Hannah, and Adam
Hi Everyone,
Adam will be undergoing a procedure tomorrow to take a sample of his bone marrow, followed by a body scan on Friday. Both of these will require sedation. After the bone marrow procedure, he’ll get an injection needed for Friday’s scan, so it will be a long day involving no food prior to procedure. His appetite is strong, so he won’t be happy.
Next week he will have an MRI done, and hopefully these three procedures will give us a clear picture of whether or not there is any cancer left in his body.
Thank you all for your continued prayer.
Adam is recovering from his 6th round of chemo, and he’s doing well. Despite some loss of appetite, he’s been gaining weight steadily. He recently began eating some soft solid foods, which has helped a lot. A week from today, he will have his 7th round of chemo, with his 8th (and final) round scheduled for mid July. Once he recovers from his final round, he will undergo several scans to check that the cancer is in fact eradicated. Please continue to pray for these last couple months of treatment and procedures.
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
Last night we got the call we’ve been waiting for, for the last two months. Adam’s biopsy results came back and his neuroblastoma is not NMYC amplified, putting him in the 4s (intermediate risk) category. This is a HUGE relief to us, and a wonderful answer to all of your prayers. This means that his treatment will be 6 months long, and the chance of future recurrence is quite low.
Since the tumor removal on 2/28, we have been waiting for pathology to give a result. We heard back last week that from the sample they had found, there was no NMYC amplification, however, they were not confident in the result because the sample size was too small, and they were discussing whether or not they would need to do a repeat biopsy. That was frustrating for us to hear. But apparently yesterday, pathology went back to do a further analysis and found another part of the tumor that was still alive, and were able to get a satisfactory result.
It has been a long time to wait for this news, and we are so relieved. From initially being told that he was almost certainly high risk, to getting some hope, and then having to wait another month through various unsuccessful tests, we had developed a caution toward any positive news. So before posting an update we wanted to be sure that we had something conclusive. It brings us so much joy to share this news with you all now.
Last week, Adam had his 3rd round of chemo, which was administered over the course of 3 days (W-F). He now has 5 more chemo treatments remaining, which are spaced approximately 3 weeks apart. The hope is that he would be completely recovered by the end of the summer.
Adam has been rapidly recovering from his surgery, and while his incision was fairly large, he does not seem to be bothered by it at all. We have a follow up with the surgeon in one month.
He will likely have more emergency room visits, and difficult days ahead, but we now can see the light at the end of the tunnel.
Please keep us in your prayers. They are so much needed and appreciated.
Although Adam has barely gained any weight over the past few months, he still has good energy, and is hitting his developmental milestones, such as crawling (a week ago), and he can even pull himself up into a standing position.
Love,
Hannah, Mark, and Adam
P.S. The photos are now clickable and can be viewed in a larger format and saved.
As of last night Adam was allowed to begin eating. We started him out slowly, and he’s ramped up this morning. He’s had 12 oz to eat this morning. His nausea seems to have subsided, and he’s now disconnected from all the tubes and monitor wires. He has been switched to oral pain meds in preparation for us being able to take him home. There has been talk of possible discharge by tomorrow. We hope that happens.
We’ve had visitors from all over the country!
Last Thursday Adam had another routine blood draw. This time he did not need any transfusions, which means he’s on the upswing!
He’s been sleeping well and eating more. Hopefully he gains weight, since he’s plateaued the past couple months.
On Monday, March 26th, we have an appointment with our primary oncologist, then on Tuesday we have a consult with a surgeon, and potentially Adam may undergo a surgery on Wednesday to remove the primary tumor. This is based on the CT imaging that was done a couple weeks ago that showed that the tumor had begun to shrink, and his organs are returning to their normal positions. Since the last biopsy was unsuccessful, and eventually the surgery to remove the primary mass would have to be performed anyway, the doctors are recommending that we proceed with this now, so that hopefully we can have an accurate diagnosis soon.
After the surgery, Adam will have a few days to recover before beginning the next round of chemo. This coming round will be 3 back-to-back days of outpatient chemo.
For the time being… he’s home and happy 🙂
The days of being apprehensive of leaving the hospital are gone. Home is so much better.
Aside from Adam’s fever, the ER doctors were also very concerned about his lethargy, elevated heart rate and labored breathing, so we were on hold in the ER until they could determine the cause. We were potentially being considered for admission into the ICU. They did more blood work to see if there was any indication of respiratory issues in his blood chemistry. Adam also spiked a fever last night of 100.3F around 6:45 pm, but the Tylenol and blood transfusion seemed to help him regain some energy, lower his heart rate and decrease his temperature. After seeing this change, the ER doctors were comfortable with sending us upstairs to Oncology rather than ICU, realizing that the respiratory issues were a result of his anemia and low hemoglobin.
We were admitted to the oncology floor around 9pm last night, and he was able to sleep from about midnight to 8:00am with only one interruption. The doctors aren’t sure what caused the fever. The virus swab came back negative for all viruses that they test for, and the blood culture is negative for bacterial infection so far. He is not eating much, and vomiting occasionally, so he’s on some maintenance IV fluids to keep him hydrated. Each child reacts a little differently to chemo, so it’s possible these are the side effects that manifest with him.
The areas that need to improve before we can be discharged are:
In the mean time, Adam will be kept on antibiotics until discharge. He was very energetic and didn’t nap all morning, but is sound asleep right now.
We had our follow up visit this evening. We were hoping to have a diagnosis and clear direction, but it was not to be. The biopsy sample was not sufficient for them to determine NMYC status. So we will be continuing with the intermediate chemo treatment tomorrow. We will go in at 9:00am tomorrow, and this round will be a 1 day outpatient treatment. The good news is we do not have to stay in the hospital. The details of how we will proceed after that remain to be decided. Although we do not have an official confirmation with the diagnosis, the doctor is optimistic of Adam’s chances of not having NMYC amplification. She continues to be impressed with his rapid improvement.
…to be continued
