I apologize if the following explanation is too technical, but it will help in understanding the glimmer of hope we received yesterday evening.
From the time Adam was diagnosed with neuroblastoma, the question of whether or not he was stage 4 (high risk) or 4s (intermediate risk) was an immediate question. For stage 4, the survival rate is based on a variety of factors, but roughly 50-60% and treatment is typically 18 months long. For 4s, the prognosis is much better, treatment is shorter, and the likelihood of the cancer recurring is lower. The only way to definitively identify which of these a tumor is, is to get a sample of the tumor and analyze it for a particular gene called the NMYC gene. If the sample is “NMYC amplified”, it is categorized as stage 4. It means that this particular gene is greatly multiplied, and thus the neuroblastoma is more aggressive requiring stronger treatments over a long period of time.
Since the first few days in the hospital, we have been under the impression that Adam is stage 4. The doctors looked at the prevalence of the neuroblastoma in his abdomen/liver, bone marrow, behind his eyes, and almost every bone in his body, and combined with the rapid deterioration since the onset of symptoms, told us that the chance of this being stage 4s was unlikely. Over the past 2 weeks since we’ve been transferred to CHLA, we’ve been waiting for the doctors to get samples of Adam’s bone marrow, and analyze it for the NMYC gene. The samples we had originally brought from CHOC were not adequate, and the process of getting other samples and analyzing them took some time. Yesterday evening we were told that the CHLA doctors did review the samples, and there is not an adequate amount of tumor for them to determine whether or not it is NMYC amplified, thus they will be proceeding with the biopsy next Monday. They did, however, mention that there was an indication that there’s a possibility it is not NMYC amplified. The details of this are even more technical, where the proteins, rather than the DNA was analyzed, but our doctor said that this, combined with how well Adam has responded to his first chemo treatment indicate that there is a chance he is not NMYC amplified. Although we will not know until after the biopsy has been done, this was our first time hearing this kind of positive possibility. We are definitely encouraged to hear this and are cautiously optimistic, but at the same time need to be prepared for either option. The next week will be one of anxious waiting, hoping, and praying.
Adam’s condition has been improving day by day. He has been taken off of most of his IV medications, and has been switched to oral meds, which are administered through his NG tube. He is being fed through the tube at night, and bottle fed during the day. His appetite has been limited, but today he showed more interest in eating. His abdomen has been shrinking, and his eye has been opening more, with his pupil possibly responding to light. His eye is still not tracking, and seems unresponsive to movement in front of it. He is off pain medication, but his blood pressure has been elevated as of 2 days ago, and he has had more trouble sleeping the last couple nights. His attentive doctors and nurses are closely monitoring him and adjusting treatment daily. We will be staying at the hospital till after the biopsy, and may possibly stay till after his 2nd round of chemo.
1) That Adam’s cancer would not be Stage 4 (high risk)
2) That his eye would continue to improve and he regain function
3) That his blood pressure would go down and that he would not require continuous medication to treat this
4) That he would be comfortable, get the sleep he needs, and begin eating more
5) That Hannah and I would not be anxious and be able to handle the waiting, the classes we need to take for home care, and all the ups and downs of each day
Here are some pictures of our happy boy:
22 thoughts on “Cautiously Optimistic”
Thanks for the update! We will continue to pray for you. May the Lord continue to strengthen your inner man!
Thanks for the updates y’all. Also staying cautiously optimistic here as well. Love y’all!
Sending lots of hugs ?, love ❤️, prayers ??, and strength ? to all of you!! Adam ?? ?? looks better, and I am happy to see that he is becoming more active ?!! I can completely understand why you would both feel cautiously optimistic. I hope and pray ?? that Adam does not have high-risk neuroblastoma.
May the Lord continue to sustain you in all of the waiting and the unknown. It’s such a joy to see Adam smiling and interacting with you both. Thank you for taking the time to update us and helping us know how to pray. We love you!
We are so pleased to hear that Adam continues to improve! He looks so much better. All of our love to you and promises to pray for all you are asking for.
Thank you for taking the time to write so we can have better understanding to pray. Lord we say amen their prayer requests. So happy to see Adam’s smile and so glad to see him playing on the floor.
So thankful to see that little boy smile. Please know our love, thoughts and prayers are with you all… Valerie
Thank you for this update and for explaining the medical in an understandable way. It is good to hear about the positive signs. I attend a prayer and fellowship time on Thursday mornings and we will be praying today for brave little Adam and his family.
Hallelujah, for little victories. I am so encouraged with this update. We continue to intercede for your sweet family. May you continue to be strengthened throughout every moment of every day. We love you guys!
Adam is looking so much better and the positive news is uplifting. Thank you both for the updates-prayers are continuing for each of you!
I just want to say, for someone who isn’t medically trained, you sure have a wonderful understanding and ability to explain clearly in terms most non medical people can understand. We are all collectively holding our breaths waiting for the results of the next biopsy. Until then, the little brave one is warrioring on and I will keep on with the prayers. Hugs!
This is so encouraging. Standing with you all in prayer!
Dear Mark and Hannah,
Thanks for keeping us updated and sharing your experience. We say, “Amen!” to each of the five prayer items. May it be so Lord!! The Lord be with you and Adam in every way.
Dear Mark and Hannah,
Thank you for all the updates, love to see little Adam smiling, so sweet!! We are encouraged with little Adam’s progress and continue to look to the Lord in much prayer. Standing with you all, may the Lord supply you richly.
Love the pics! Adam is so cute. Fingers crossed that Adam does not have Stage 4 neuroblastoma!
I love the updates, thank you! Grace be with you three!
Dear Mark and Hannah,
We really appreciate each post each day. His day-by-day improvement is so encouraging! We are thankful to the Lord and praise Him that He is doing this in the Body and through the Body. We are standing with you all and will not stop praying for Adam.
Praying for you all everyday!
Dear Mark &Hannah,
Thank you for taking the time to send us the “technical”. We are going through this with you and really it really helps to see the full picture and how we can pray specifically. We are steadfastly standing with you and the Lord for Adam’s full recovery.
We love you all
We love each update, and are happy for this positive news! We too will be cautiously optimistic. Know you are in the forefront of our thoughts and pressed into our hearts. We continue to pray and stand with you constantly.
He’s sooo cute!! We love his smile!! -Anna and Steve