CT Scan Results

Amy's Posting - Asher was so brave for his last CT scan. I realize it might seem strange to describe a baby as brave, but the doctors and nurses told me they would need to sedate him for the procedure since he is 4 months old and moves his arms and legs a lot. So after our hour and a half time frame of drinking the contrast, I took Asher to the CT scan room and laid him on the table. He immediately got very still and didn’t struggle with having his arms pinned. He stayed so still and looked so peaceful. The tech was able to perform the procedure without the sedation. It was huge relief to me.

The next day Todd and I met with the oncologist and we received some of the best news we could have hoped for….Asher’s tumor has decreased in size by one centimeter. It is a true answer to our prayers. The tumor went from a diameter of 2.6 cm to 1.6 cm. We were so joyful and thankful for the news. It was amazing to see how much smaller the tumor actually is when the doctor showed us the both of the scans side by side. Early indication is that his tumor is regressing naturally and while it is still considered Stage 1 neuroblastoma.

We’ve had so many people all across the U.S. praying for Asher and we are so thankful for all of your prayers and support. We truly believe that God answers prayers. While the news is very encouraging, we will continue to pray for further natural regression of the tumor. There is one rare case that I’m aware of where a family experienced a similar situation, only to learn that their baby’s cancer spread at 6 months. I’ve been praying for this family as they are dealing with treatment for their baby as well as trying to find peace with the “wait and watch” approach that they agreed to for their son’s treatment protocol.

We also have some good news about Hudson. I also took him to Children’s Healthcare for an Upper GI test. The good news is the doctors did not find anything abnormal during that test. His diagnosis is that Hudson has severe reflux and increased his antacid by a large amount to try to help Hudson feel more comfortable during and immediately following feedings. His hypothesis is that babies are smart and attribute cause and effect. So that Hudson knows that after he eats his throat and stomach burn and therefore decreases his feedings. After two few weeks of increasing his dosage, we also found out that he had gained 12 ounces, which is very encouraging. We can attribute that to the addition of KARO syrup and rice cereal to his formula. The KARO syrup is packed with calories. We are now hoping to decrease the KARO syrup and see an increase in the amount of formula he takes during a feeding. He is averaging 1 ½ ounces a feeding and we need it be closer to 2 ½ per feeding. His current weight is 9 lb. 1 oz.

Zachary celebrated his 4th birthday earlier this week. Unfortunately, he was sick on his actual birthday and had to go to the doctor's office. We will be celebrating with his friends at the end of next week (since this week is spring break for Georgia Schools). He is looking forward to his party.

Long Overdue Update

Amy’s Posting – I can’t believe it has been so long since we’ve updated the blog. Asher and Hudson are now three months old! Todd has been back at work about six weeks now and I’ve been settling into a routine. Ironically enough, the routine pretty much takes every moment of my day and leaves little time for anything else, even things that I love doing like writing. But, I’ve taken this time to try and enjoy all (well, if not all, at least most!) of these moments that I know are so precious.

I spent the little bit of free time I had in January doing research on neuroblastoma in newborns. One of my neighbors introduced me “via email” to another family in Atlanta that is dealing with a neuroblastoma diagnosis with their son. I can’t explain how helpful this introduction was to us. This new friend has been so supportive and has introduced us to several good web sites with research and information including a listserv for parents of children with neuroblastoma. Todd and I posted an inquiry on the listserv to see if we could be connected with any families with a situation similar to our situation (we’ve since learned that the chance of a newborn being born with neuroblastoma is 24 in 1 million). Following our post, we received several heartfelt emails from families across the country who had similar experiences to ours. Some of the families opted for surgery on their newborn babies while others followed the “wait and watch” approach that our doctor is recommending. For some, that protocol has been successful and for others, the cancer spread. Another mother, not knowing where we lived, emailed me explaining that our situation sounded very familiar to someone else she knew. She sent me a blog link for this family and when I started reading it, their story was exactly like ours (except that their newborn son’s diagnosis was several years ago). As I continued reading their story, I discovered the family lived in Atlanta and that they had seen the same doctors as we had. We’ve been able to connect with each other and she has shown me so much compassion, kindness and support. I still feel amazed at how God works in our lives to provide comfort to us when we need it most. A few other neighbors and friends have also given us some connections and I am hoping to find some time soon to reach out to these families for additional support and advice.

We did ask receive a second opinion from St. Jude’s, and they concurred with Asher’s oncologist’s treatment plan. It was good to have this confirmation. Overall, we are still struggling with our decision about the best path forward for Asher, but are trying not to let the situation define our lives.

I’ve have spent more time going to doctor appointments than I would like to. Since our last post, Asher has had an ultrasound and another appointment with the oncologist. Based on the results of the ultrasound, it appears that the tumor has not grown in size. We were very relieved to hear that news. His next CT Scan will be at the end of March. Following that scan, we have an appointment with a pediatric oncology surgeon to discuss the pros and cons of surgery. We’ve mostly accepted the new reality of our life and feel at peace with the path forward, but we still find it difficult to find strength close to his appointment times. It seems to be the real reminder that we have a child who may have cancer. And, the more I read the stories of children with neuroblastoma, the more I feel led to become an advocate for childhood cancer once again. It saddens me to read the statistics for neuroblastoma such as only 30 percent of children diagnosed survive it. We feel so grateful that even if Asher does have neuroblastoma, the survival rate for a newborn diagnosis is very favorable.

As February approached, Todd returned to work. It was such a blessing to have him home with us for about two months. It was very special to see his bond with Zachary grow even stronger. I also started some small project work for my client. In the beginning, I was afraid of my new responsibility of caring for three children, but in other ways, it felt comforting to get back into a normal routine. I needed this time away from the blog in many ways so we could feel like a normal family again.

As March begins and the weather turns warmer, we are once again spending lots of time outside, with Zachary riding his bike around the neighborhood and me walking the babies. As many of you know, Zachary has always loved spending time outside playing so this very “normal” activity has been very comforting to me.

We are now faced with some other health-related obstacles with Hudson. We are not seeing the rate of growth that we should be experiencing for his age. He’s now up to 8 lbs. During the next several weeks, we will be meeting with some specialists for consultations and test to help identify if there are any other obstacles besides his severe reflux. The doctors feel pretty confident that the reflux is the cause of the slower weight gain. A few weeks ago, we started adding rice cereal to his high calorie formula in hopes of promoting more rapid weight gain. He remains one of the most content and happy babies we’ve seen. The only thing we’ve identified that he dislikes is his bath!

Even with all of the health obstacles, we have a lot of laughter and love in our house. Our hearts melt every time Zachary, Asher or Hudson smiles at us. And, we continue to be amazed at how much Zachary loves his brothers even through all of the chaos we’ve experienced the past several months.

We are also planning a very important event for our family in April, Zachary’s 4^th birthday party! To stay with his obsession with anything with wheels, he’s asked Mommy to make him a dump truck birthday cake this year. In years past, he’s had a school bus, train and fire truck birthday cake!

We recently had some professional photos taken of the babies and our family. We will post some of those photos to the blog soon!

We appreciate everyone’s continued prayers and friendship during this time.

CT Scan Results

Todd's Posting - Wednesday morning Asher and I woke up early to get to the hospital for his CT scan. He did great during his short time in the CT machine and the images turned out well. Yesterday we all went to meet with his Oncologist to go over the imaging results.

The good news is that the size of the tumor is not as large as we originally thought (based on the results of a sonogram when he was 5 days old). At this point it is 2.6 cm at its longest point and sits on top of his kidney within the adrenal gland. We also learned that the tumor is cystic, meaning comprised mostly of fluid contained within a sac, whereas most neuroblastomas are solid tumors. The doctor called this cystic neuroblastoma. These are a very rare type of neuroblastoma with very few documented cases. The oncologist is still working on the assumption that Asher's tumor is neuroblastoma although without a biopsy they do not know for sure.

However, this does not change the medical protocol for Asher which is to continue to scan and evaluate the tumor at regular intervals (every 6 to 12 weeks) to determine if it has changed size. Our doctor takes a conservative approach to ordering CTs on infants like Asher and thus will alternate CTs and ultrasounds until he is 2 years old.

Because of the high likelihood of a positive outcome due to catching it early, we are now in a wait and watch mode. There are a couple of potential scenarios:

• The tumor could resolve on its own (converts into ganglioneuroma), the best possible outcome
• If the tumor increases size by 50% or more they will surgically remove it
• If there is no change after two years we will need to decide what to do at that point

We followed up with our pediatrician today (Friday) to discuss the results and our options and we've decided that we would like to pursue a second opinion to see what another pediatric oncology group would recommend before making our final treatment decision.