It’s been over 48 hours since Adam was admitted to the ER. The doctors have now been able to confirm that the blood cultures that they drew on Saturday are negative and therefore show no signs of infection in his blood. Thank you, Lord! ?
Adam was discharged from the hospital TODAY, and he received platelets just before discharge.
Thank you all so much for praying for us these last few days especially. Even though going to the ER for a fever is almost “routine” for his situation, the thought of it indicating something worse is still really scary. And of course staying overnight in the hospital is never fun (for us and Adam!)
Thank you for all the thoughtful comments below, texts, phone calls, and visitations. We are cherished by all the love and care for us. ♥️ We’re almost at the finish line! Praying for no more fevers and clean scans.
This morning at around 11:00 am, Adam spiked a fever of 101.5F. So we immediately brought him into the ER to check. They drew blood cultures to check if there is any infection in his central line. Then they administered Tylenol and antibiotics immediately after.
Since Adam is neutropenic (immunity almost zero) and has a fever, he has been admitted into the hospital. We will be here until the blood cultures come back negative for infection, his fever goes away and his immunity starts increasing.
Just when we thought we were “in the clear” since he just finished his last round of chemo (as far as we know now). Sigh.
Please keep us in your prayers. Adam’s fever went away shortly after receiving Tylenol this afternoon, but just tonight around 9:30 pm it seemed his temperature was on the rise again.
Just realized that the video I uploaded in the previous post had an error. So I’m posting it again… (for those who care to watch a 10 second clip of Adam taking 3 steps, ha). Enjoy!
We have been anxiously waiting to start Adam’s last round of chemo (cycle 8). It’s taken him a lot longer to recover this time, so he hasn’t been ready to start therapy yet. He was supposed to start chemo 2 weeks ago but wasn’t fully recovered from the last cycle (cell counts still too low). So we waited another week, but he was still not ready. We just got confirmation from the doctor that he will start his last round of chemo TODAY. Even though his counts are low, they are acceptable to start chemo. Today’s chemo is only a 1-day cycle, but it will be several hours.
Over the next 2 months Adam will have a series of scans and tests to confirm the cancer is completely gone, and determine whether more chemo or a biopsy is needed.
Adam has been eating well and enjoys eating solid foods now! He’s now 18.5 lbs and 13 months old. He has also taken his first few steps as of yesterday, which is so exciting for us! Below is a short video.
We wouldn’t be able to get through all this without your continued prayers and support. A million thanks ?.
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
Adam just recovering from his MIBG scan. Still a little drowsy looking from the anesthesia.
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.
Hellllo. Sorry it’s been so long since our last post! I officially went back to work this week, and Mark resumed his role as daddy daycare. The good news is that we both survived our first week back at work! ?
It feels like not much has happened since our last post, but when I think about it closely, I guess a lot has actually happened…
Adam has had 3 blood draw appointments since his chemo treatment on 4/6, and this was the first chemotherapy cycle that he did not need ANY blood transfusions! We are so proud of our little trooper. His little body is really fighting this cancer. ? A friend of my sister’s made this adorable onesie for our brave little boy! ? #fightingcancer
Adam has been eating well- about 24 oz of breastmilk a day. Per the dietician’s recommendation we’ve also been fortifying some of his bottles with a little bit of formula for extra calories. We’re also diligently trying to introduce him to solids every day. He’s slowwwwwly becoming open to solid foods. Yayyyy! We are SO happy. I really thought he was going to drink breastmilk forever. We put pieces of food in front of him and let him feed himself and he enjoys that because there’s no spoon being shoved in his face, even though most of his food ends up on the floor ??♀️. He’s also sprouting his 5th tooth right now. Look how happy he is eating broccoli! ☺
Adam is also a super fast pro-crawler now. And he follows us eeeeeeverywhere around the house. He’s also learned how to pull himself up to a standing position and stand for a long time. It’s super fun to see him so mobile and we love this stage he’s at! We are constantly amazed at how well he’s still developing and growing. It’s hard to remember he has cancer when you see just how happy he is all the time.
Adam will begin his 4th chemo cycle next week, and it’s expected to occur over 3 days again. He will have an echo done next Monday to make sure his heart is functioning properly, since the next round of chemo medications can affect the heart. After this, he’ll be half way done with therapy. Below are several photos of our brave little boy, and a silly little video that was just too cute not to share with you all ☺
