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 🙏.
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 ☺
Adam seems to be recovering very well from his surgery. His incision seems to be healing nicely, and he is on the go now, crawling everywhere. He recovered much more quickly than we had expected.
Biopsy results? Well, we’re still waiting on that. Pathology was supposed to have something by this morning, but now it’s looking like Friday possibly. Our understanding is that they are having some difficulties with analyzing the tumor sample, because it was mostly dead; which is good news because it means that the treatment is working, but also bad news because we really really need to know the tumor DNA and whether it is NMYC amplified. This would significantly affect the course of treatment. We also just found out that within the intermediate risk category there is a designation of favorable vs. unfavorable tumors. Unfavorable tumors have a higher chance of relapse later. We are not sure yet if Adam’s tumor has this classification. Please pray for the biopsy to be completed soon, and that the result would indicate a good outcome.
Though the biopsy results are not yet available, his oncologist recommended proceeding with treatment as originally planned (intermediate risk). Therefore, Adam started chemo cycle 3 today. This cycle will continue for 2 more days, all outpatient visits.
Thank you all for your patience and faithfulness to continue following our blog. Know that while we may not be posting to the website every day, this only means that things are going well and we are enjoying our time at home with Adam. We had a relaxing time in the park on last Sunday. Thank you so much for continuing to pray for us.
We were discharged this morning at 10:30 am. We are finally back at home again! Adam is recovering well from his surgery. We are still waiting for a big poopy diaper but he’s passed a lot of gas already, which is a good sign that his bowels are moving 👍
The nutritionist came by last night and was concerned that Adam is not gaining adequate weight. He’s a cancer patient who vomits when he’s not feeling well and neutropenic, but he eats well when his counts are up again. So what’s the solution to get a baby on chemo treatment to gain weight? I’m not sure. First, they are recommending that we fortify his breastmilk with a small amount of formula. If anyone has any good suggestions for formula supplementation let me know. They’ve sent us home with Enfamil infant formula. We’ll see how this goes. He seems to be a really picky eater so my guess is that he’ll notice the change in taste of his breastmilk and refuse to drink, but let’s hope I’m wrong.
For now, we are enjoying just being back at home for a couple days before going back to the hospital for our next visit. We thought the surgery was going to set him back from his crawling for a few weeks but he’s right back at it already! We are over the moon.
Today, Adam is enjoying spending some quality time with Dada on his birthday. (Dad’s birthday, that is ☺) And the best birthday gift was being discharged from the hospital!
Thank you to everyone who has been praying for Adam’s surgery and recovery. Because of your prayers, Adam has been doing so well. If you can, please also say a prayer for our friends, the Hammersleys, who we recently met at the hospital a few weeks ago. Their daughter Hazel, (age 7) had been battling neuroblastoma for 5 years and lost her battle with cancer yesterday morning. Even though we don’t know them well, this hits so close to home. As part of the neuroblastoma family, we are heart broken, and our heart goes out to them. Please keep them in your thoughts and prayers. 💛
It’s now been almost 36 hours since Adam has had any food. The doctors do not want him to eat anything until they know his intestinal tract is functioning properly. We are hoping they regain function very soon because as you can imagine, Adam is STARVING. He’s tried vomiting a few times this morning, and last night he vomited a little of whatever was left in his stomach, so the doctors ordered an abdominal x-ray. The x-ray showed a lot of trapped gas in his belly. They may need to put a tube down to remove the gas.
Surprisingly, our brave little warrior slept through the night well, with almost no crying, so I got more sleep than anticipated. The night nurse expected him to be crying all night and was shocked to find him asleep for most of the night. He’s been soothing himself as much as possible, by sucking on his fingers, like such:
Mark and I are doing OK. The night before the surgery we both didn’t get much sleep, but last night was better. During the surgery yesterday, we were also able to spend some time praying for Adam’s procedure while enjoying a nice breakfast together at a little cafe down the street.
Adam will need to either pass gas or have a bowel movement before he is able to eat. This will confirm that his intestinal tract is back in working order. His bloated belly will also need to improve, otherwise anything he eats will be vomited. Please pray that Adam will be able to eat very soon.
Just a brief update-
Adam’s surgery was successful. We arrived at the hospital at 5:30 am, he entered the OR at 7:45 am and was in recovery by 11:00 am. The surgeon was able to fully remove the tumor without any complication. Biopsies of the liver and the bone marrow were also successfully completed.
The anethesiologist was originally going to put an epidural in, for post-surgery pain management, but when they inserted the needle, there was a lot more bleeding than expected so they decided to use IV pain medication instead.
Adam has been in and out of sleep for the last few hours. He is not allowed to eat anything for at least the next 12 hours so that will be the biggest challenge for now – to keep him comfortable and not eating.
More updates later. THANK YOU ALL so much for praying for us this entire morning. The Lord surely supplied us during this time, and cared for Adam in the best possible way. 💗💗💗 Below are photos from before and after surgery.
Adam will be undergoing a surgery tomorrow (Wednesday, 3/28) to remove the primary tumor by his adrenal gland/kidney area. This tumor is a little bigger than a golf ball, and will be a rather complex surgical procedure with a lot of blood vessel and organ involvement. It will be an open procedure with a 4-6 inch horizontal incision in his abdomen.
Additionally, one of the cancererous areas of his liver will be biopsied in the event that his tumor is necrotic (dead) and they are unable to obtain a viable tissue sample. A bone marrow sample will also be taken from his hip bones so they can analyze how much cancer still remains in his bones.
The procedure will begin at 7:30 am, but we need to check in for surgery prep at 5:30 am. Adam also needs to fast starting at 3:30 am.
Please pray for:
- The surgeon and the surgical team
- A clean removal of the tumor, with no damage to any blood vessels or surrounding organs
- That 100% of the primary tumor could be removed
- That Adam would tolerate the procedure well, not be in too much pain, and be able to recover quickly
- That Adam would regain his eating again after the surgery (he’s been eating well all week)
- That we wouldn’t have to stay too long in the hospital (minimum will probably be 3 days, maximum one week)
- That we would not be too anxious or worried, but rather we would trust in the Lord to care for Adam before, during, and after the surgery
We love you all and thank you for continuing to pray for us. 💗
We were discharged from the hospital last night (Sunday) around 6:30 pm. We are home now! ☺
As mentioned previously, the doctors had been monitoring the following 3 things before we could be discharged:
- ANC (neutrophil count- immunity)
- No bacterial growth in blood culture or recurring fever
Regarding his eating…
Adam was taken off of IV fluids Sunday morning to see how well he eats throughout the day. The doctors wanted to make sure he eats and does not vomit. Adam ate 17 ounces yesterday which was an improvement from the days before, and he hasn’t vomited in the last 2 days.
Regarding his ANC…
His ANC has been slowly increasing over the last few days. On Friday, his ANC was non-existent. Yesterday when we were discharged, it was 280. He is still neutropenic but the doctors were happy to see that his immunity is on the upswing. We are continuing to give him injections until his counts are higher.
Regarding any bacterial growth…
Blood cultures were drawn Friday morning as soon as Adam was admitted into the ER, to see if there was an infection in the blood. It takes 48 hours for the final culture results to come in. By yesterday morning, the blood cultures were negative; as well as the other nasal swabs and stool samples they took to check for possible viruses. All came back negative, which is good news. He also hasn’t had a fever since Friday night when he was admitted into the ER.
Since Adam showed improvement in all 3 areas, we were discharged last night. His platelets are still very low, but the doctors don’t think he needs any transfusions since he is not showing any signs of bleeding. (There’s always a risk with any blood transfusion so the doctors try not to infuse unless absolutely necessary). We will go back to CHLA this afternoon for Adam’s scheduled blood draw appointment and dressing change.
Some other good news, he was taken off his daily blood pressure medication, yay! His BP has been normal the last few days so the doctors did not think he needed it anymore.
On another note, our sweet boy turned 9 months old a few days ago! On Friday he started crawling (good day to start 🙄) and he can sit up on his own now 💛