Month: April 2018

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 ☺

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.

 

 

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.