Good news! Adam completed all his scans last month, and we got the all clear last week! Still no signs of cancer, thank you Lord.
Unfortunately, we were unable to proceed with his eye surgery because he had a bit of a cough, so the anesthesiologist didn’t feel comfortable proceeding. This will be postponed for sometime in the next 2 months (for the 3rd time!!) We also had an appointment with the ophthalmologist 2 weeks ago, to assess him before surgery. He was able to do a much more thorough test of Adam’s vision since Adam is more responsive and able to follow directions better. However, Adam’s vision in his left eye is on the lower end of what the doctor was hoping for. The hope is that the surgery would not only straighten his eye out cosmetically, but also encourage his brain to use images from both eyes together, perhaps giving him some gross 3D vision. While the chance of this is quite low, we still have hope that it may work. One of the biggest benefits, would be that we would no longer need to patch Adam’s good eye for 2 hours per day, which is still a real challenge. Otherwise, we would need to continue patching for a couple more years if we want to maintain the current level of vision.
Wow, it’s been over 6 months since our last post here. Happy new year! What have we been up to? Well, taking care of 2 little ones has just about consumed all our time and energy. Adam has really embraced his new responsibility as a big brother and is loving it. He started preschool in October 2019 and I went back to work fulltime this year. Adam is talking a LOT now, and he surprises us with new words and phrases every day. Here’s a cute little video:
Next week, Adam has his 6 month scans to make sure the cancer is still gone. The following week, Adam also has an eye surgery to correct his “lazy eye”. He was supposed to have his eye surgery 4 months ago, but we had to reschedule because he was sick. All these procedures require anesthesia, which means he can’t be sick for TWO WEEKS before the procedure. To ensure that Adam stays healthy this time, we’ve decided to pull him out of preschool for the whole month of February. Well guess what? He got sick at the end of January, just before we pulled him out of school! ? He’s still got a little bit of a cough and runny nose but we’re hoping he’ll he fully recovered by this weekend so he can still proceed with his scan next Monday. Please pray for these upcoming procedures:
February 17: MRI scan
February 20: MIBG injection
February 21: MIBG scan
February 24: eye surgery
We’ll basically be at the hospital almost every day next week. Each procedure requires him to get an IV, and now that Adam is older, he’s aware of what’s going on and it’s going to be SO hard to keep him still and watch him get poked ?. I’ll probably stay home with Emily while Mark takes Adam to the hospital. We haven’t figured that out yet. Please pray for these details to be worked out.
Can’t wait until this month is over. Thank you for all the continued prayers ?.
On July 9, 2019, we welcomed a new addition to our family, and our brave little Adam became a big brother! Adam is excited about his new baby sister, Emily, but he’s also figuring out how she fits into our lives. For the last 2 years, Adam has been our main focus and the center of our world, so it’s definitely a transition for him (and us) not having our full attention. But he is managing well, and still very attached to his “dada”. We are all learning how to adjust to life as a family of four and we feel very blessed to have Adam and Emily in our lives.
Adam has his next MIBG scan on August 2 and his MRI scan on August 21. These will be his 1-year scans from when he finished chemo. I can’t believe it’s already been ONE YEAR since Adam has been cancer free! If all scans come back clean, this will hopefully be his last MIBG scan EVER. He will continue to have MRI scans annually though. Our follow up with his oncologist where we’ll get the scan results is on August 26. I’m also struggling with the fact that I probably can’t be there with Adam next week since I’ve got a newborn to care for at home now. It’ll be hard not being there at the hospital when Adam wakes up from his scan, but I know he’s in the best hands with Mark.
Adam also has an eye surgery scheduled for September. This is to adjust his left eye muscles so that both eyes move together, which will hopefully cause him to use both eyes at the same time. (Right now he only uses one eye at a time, which prevents him from having depth perception). There’s a 70% chance the surgery will be successful, but we think it’s the best chance he has at being able to use both eyes together. We are continuing to do eye patch therapy every day for 2 hours a day. Some days he tolerates it well and other days are still tough. On the good days, he puts his eye patch on all by himself! Adam’s ophthalmologist says he’ll need to continue eye patch therapy until at least the age of 3, even after the surgery.
Please pray for Adam’s scans these next few weeks, as well as his eye surgery in September. Please also pray that he would adjust well to his new sibling. We are so thankful for the Lord’s blessing on our family this year and for all of your continued prayers for Adam!
This update might be a bit lengthy, so I apologize in advance. But there’s a lot of information to share with you since our last update, and it’s been awhile since we’ve given any update regarding his eye. It’s been 6 months since Adam’s last ophthalmology visit, which was right after he finished chemotherapy. On 4/10/19, Adam had his 6 month checkup with the ophthalmologist to see how his eye is doing. We have some pretty good news – it seems Adam’s bad eye is able to see more than it was able to at his last visit 6 months ago. The doctor covered Adam’s good eye and his bad eye still tracked a toy that they put in front of him. Then after that, they patched his good eye and he was still able to give the doctor a high five! That was exciting news for us, considering we thought he couldn’t see ANYTHING with his bad eye. We had already accepted the fact that Adam was probably blind in that eye, so this news came as a complete shock to us. The doctor was also very glad to see that there have been some improvement in Adam’s vision. However, we think his range of vision is still very minimal.
But the question NOW is whether the improvements could be sped up or made even better if his brain learns to use his bad eye more. In the recent weeks, his bad eye has become more lazy, (i.e. drifting to the side) because his brain knows it doesn’t have good function and is therefore overusing his good eye and underusing his bad eye. The only way to force his brain to use his bad eye is to patch his good eye, forcing him to use his bad eye. The doctor said there’s a 50/50 chance that this would work. His good eye would have to be patched for 2 hours a day for at least 6 weeks. It’s also very labor intensive (for us) because it would require us to fully engage him and keep him distracted for the 2 hours so he doesn’t think about the eye patch and want to rip it off.
As far as we know, Adam’s optic nerve has been significantly damaged, therefore his eye will never be able to recover 100% of its function, even with the eye patch therapy. However, it’s possible that Adam’s eye function could be a little more than it currently is; we just don’t know. And the only way to know whether his eye function could improve, is by doing this eye patch therapy. Our goal is for his bad eye to come more into focus. And the doctor explained that the eye patch therapy is more for cosmetic purposes. The amount of his eye function is already preset based on the damage that occurred to his optic nerve.
The alternative is surgery, to stitch his eye closer to the middle. But we are really hoping to avoid surgery. SO, we have decided to proceed with eye patch therapy, and we wanted to give this update after we’re able to report on how it’s been going. The first few days was rough – he cried incessantly when we put the patch on, and we were almost ready to give up. But then a few days later, it got a little better. Adam would still cry when we put the patch on, but after a few minutes, he’d forget about it (sometimes). It’s been a struggle, and every day is a different challenge, but Adam has been a trooper. It’s been exactly 2 weeks now, and it’s hard to see how we’ll be able to keep this up for another month! But some days he’s so cooperative, it amazes me how he could still be so calm with his vision obstructed. I wish I could see what he sees. Overall, we’re hanging in there.
Please pray that the next 4 weeks of eye patch therapy will continue to go well, and that this would help his eye to come more into focus; and if possible, for its function to also improve. Below are some photos of our little warrior sporting his eye patch.
Lastly, we had a checkup with his oncologist 2 weeks ago, and she confirmed that his scans are still CLEAN and no signs of recurrence. Adam is now 7 months in remission. Praise the Lord! We are so thankful. His next set of scans will be pushed out to 4 months, which we’ve scheduled around the arrival of baby #2 (yes! Adam’s going to be a big brother!), and this will hopefully be his LAST set of scans! Thank you all for continuing to pray for Adam, and especially for those who have been vigilantly praying for his eye. The Lord was surely able to do more than I even thought possible. The fact that Adam can see anything out of his left eye, has already surpassed my expectations.
Just another quick update on Adam’s scans this week. He went in for an isotope injection on Tuesday, where they placed an IV in his arm to inject the isotope. I was super nervous about it because in the past they’ve had trouble finding a vein. But this time they called the IV team (I just found out this exists!) and they got the IV placed on the first try! I was SO glad he didn’t have to suffer through multiple pokes. We kept the IV in his arm overnight, which saved him from another poke the next day.
His MIBG scan was on Wednesday, but he woke up with a cold that morning and a super runny nose, so there was concern from the anesthesia team, but they confirmed that his breathing was still clear so we proceeded with the scan. Scan took 1.5 hours and all went well!
Adam’s second scan, MRI, was scheduled for today (Friday) but because he’s still sick, and also developed a cough in the last couple days, the anesthesia team decided to postpone his MRI for 2-3 more weeks. So we took the IV out of his arm last night and now we’ll just have to hope his cold goes away soon.
Great news is that we got an email from his oncology team yesterday indicating that his MIBG scan results came back, with a score of 0 (which means zero cancer cellls detected). SO thankful to hear this news! Thank you, Lord. MRI in 2-3 weeks will hopefully confirm this. Thank you everyone for praying for Adam and our family this week. ?
This post is long overdue, and while it’s been over 3 months since Adam was declared cancer free, we will still continue to update this blog for those who would like to continue receiving updates on his follow-ups and check-up appointments. Adam will continue to have check-up scans every 3 months for at least the first year. And then follow up scans every year after that, not to mention visits to his ophthalmologist every 6 months at least until he’s in grade school.
On November 11, 2018, we threw a party/fundraiser event in honor of Adam being cancer free. It was a joyous celebration. We were also able to raise some money to donate toward chidldhood cancer research, which we were so excited about. Here’s a few photos from the big celebration:
The very next day, Adam had his first 3-month follow up scans at CHLA. These were his first scans since completing chemotherapy. Monday was MRI, Tuesday was MIBG isotope injection, and Wednesday was MIBG scan. The MRI and MIBG scans required sedation, so Adam also had to get his first IV on Monday since removal of his central line, so they could administer the anesthesia. We kept the IV in his arm on a splint overnight (which he was NOT happy about), and then he got another IV on Wednesday. Unfortunately they couldn’t find a vein this time, so after poking him 3 times and still finding no vein, they decided to sedate him with gas first, and then put the IV in after. That was SO heartbreaking to watch. ?
BUT, we had a doctor’s appointment with his oncologist a week after his scans, and thankfully she confirmed that his scans still no signs of cancer. ?
We’ve now had some time to process everything that’s happened this past year, and settle back into “normal” life again, whatever that means for us now. We’re still figuring it out. As for me, it’s been somewhat of an emotional time, recounting those 7 life-changing months, wondering if there was anything I could’ve done differently to keep him from losing sight in his left eye. ☹️ But even though I can’t change anything now, I realize this is just part of the healing process for me. On the bright side, we’ve definitely gotten used to no more regular hospital visits though. So much, that we completely missed his doctor’s appointment at the hospital with his new pediatrician last week. ?
Adam has been spending a lot of time with his cousins and learning how to interact with other kids, which he really enjoys now that he’s no longer in isolation. It’s been fun watching him play with other kids. He gives his cousin Elliot a big hug every time he sees him! ??
Our next update will hopefully not be so belated. Oh btw, Adam is now 21 lbs and turning 1.5 years old this week. He’s also eating solid foods and eating well (most of the time).
Well, I think I already gave away the good news in the subject line. We didn’t want to keep you holding your breath, and we just couldn’t wait to share this news with you all!
As we mentioned in the previous post, Adam had a series of scans and procedures over the past week, including a bone marrow biopsy, an MIBG scan, and an MRI of his entire body.
We had a follow up appointment with his oncologist this afternoon to review the results, and all scans showed no more signs of cancer! So Adam is now officially CANCER FREE!!!!!! Words cannot express how we feel. This is the best news we could’ve ever received!! Tears of joy came streaming down my face as I heard this news. I thought about what our life would be like now, and how Adam can finally begin to have a normal childhood. We thank and praise the Lord for this good report.
It was exactly 7 months ago that Adam was diagnosed with Neuroblastoma. Next Friday, he will have some labwork done for some final checks before scheduling his permanent IV removal (central line). After that, he will have scans and follow up appointments every 3 months for the next year or so, and ongoing follow-up likely for the rest of his life.
There’s so much more to say and share with you all. So more to come later. For now, we just wanted to share this very exciting news with you all. Thank you for all your prayers and support these past 7 months. We could not have made it through without you. We love you all.
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.