Oncology Appointment

Amy’s Posting – We appreciate everyone’s prayers for our appointment with the oncologist today. When I saw all of the children in the waiting room for their appointments it brought back a lot of memories from Camp Sunshine. As I scanned the waiting room, I was once again struck by the optimism and hope that seemed to shine through the children. They seem to exude courage and innocence which I think helps them win their battle to become cancer survivors. The hallways of the doctor’s office are filled with professional photography and encouraging quotes from these cancer warriors. I was quickly reminded of the survivor “case studies” I wrote for the American Cancer Society early in my public relations career. It was strange to think that Asher might become one of those profiles and that through this blog, we are beginning to write his story.

We were very impressed with our doctor. He spent a lot of time educating us about neuroblastoma, describing the various scenarios for diagnosis, staging and treatment and answering our questions. We still do not have an actual diagnosis but our doctor is proceeding as if his tumor is neuroblastoma. Our session was very informative and armed us with the information we need to make decisions as move closer to the actual diagnosis. One of the most striking facts is even though neuroblastoma is a common childhood cancer, the actual number of annual new cases is only about 600. And finding it in a newborn or during a prenatal ultrasound is a very rare occurrence. We feel very fortunate that this was discovered prior to Asher’s birth as the prognosis for children over two with neuroblastoma is not as favorable.

It is too complicated to explain all of the potential scenarios until we have more information from additional tests that the doctor is recommending. Our immediate next step is for Asher to have a CT scan early next week. The images from the CT scan will give the doctor a precise measurement of the tumor and confirm if the diagnosis of neuroblastoma at a stage 1 is accurate. If that is the case, the prognosis is very favorable, but we will be faced with some uncertainty for his first two years as the doctors will continue to monitor the tumor with CT scans and ultrasounds to ensure it does not grow. We do have one area that does cause some concern as we prepare for the CT scan results. Asher’s tumor is about twice the size of what they typically see in newborns. If the measurement is confirmed to be of a certain size, then Asher may have to have surgery to remove it.

We are relieved to be starting our journey toward cancer survivorship with Asher. We hope to exude optimism, hope and courage for Asher as we write his story.

And Hudson Makes Five

Amy's Posting - Sunday was a very special day for us as were able to reunite our entire family of five. During Hudson’s last day in NICU, we said our farewells to the nurses, the physician assistant and the occupational therapist who treated Asher and Hudson. As we made our way to the atrium, everyone was so excited to see the twins I was holding in the wheelchair.

For the past three weeks, we had been making daily trips to the hospital and were looking forward to not have to split our time between home and the hospital.

During our time in NICU, we had the unique opportunity to recommend MotherWise to two of the caretakers working with our sons. MotherWise is an international discipleship ministry that produces, distributes, teachers and translates Bible study materials for the family. During our conversations with them, they both expressed an interest in going on a mission trip next year.They both read more about the program and are thinking about doing a mission trip together.We know their skills will be invaluable to the program. This seemed to make the stay in NICU have special meaning.

It was touching to see Zachary’s reaction to his other brother. He was all smiles and looked like a proud big brother. For the next few days, Zachary would ask us, “Which one is Asher and which one is Hudson?” We’ve taught him that Asher has dark hair and Hudson has lighter hair. He’s now able to identify them himself.

The past week has been a blur. It seems like all we are doing is feeding, changing diapers, eating our meals and then it is time to start all over again! The twins are on a schedule, feeding every three hours and our lives are lived in three hour increments. For now, we are lucky that they do sleep a lot between the feedings. And, we’ve been carving out time to make special Christmas memories for Zachary. Zachary had lots of fun decorating a gingerbread house that one of our sweet neighbors gave him as a Christmas present. We also made Christmas-themed sugar cookies and Zachary was designated the chief decorator. More sugar landed on the floor than on the cookies but we all had a blast.

I’m still in awe that we actually have two new babies in our family. The past two and a half years have been tough as I struggled with infertility and a miscarriage. I think every new mother will always remember what it was like to see their baby(ies) for the first time. This time was even more special than I even imagined.

During the two years of trying to conceive, I remember reading the story of Hannah and praying her prayer. “Dear God, if You will only give me a son, I will give him back to You, to serve You all his days.” As we continue waiting to confirm Asher’s medical diagnosis, I am reminded of my prayer and recognize that Zachary, Asher and Hudson are truly blessings from God and I need to trust in his plan for their lives.

As tired as we both are right now, we are both taking every opportunity to truly enjoy and embrace the tender moments of feeding and caring for newborns. They both look so peaceful and content, which gives us a reminder of the true meaning of the holiday season and life itself. We wish each of you and your families a very Merry Christmas!

Our Christmas Present

Amy's Posting - We received a call early this morning with some good news. Hudson should be able to come home tomorrow! We are delighted and surprised by the news as we were thinking it could be Monday or Tuesday at the earliest. He completed eight bottles yesterday and passed his car seat test on Thursday. He is still gaining weight and strength and is currently 5 lbs 3 oz. Having our three sons at home is the most special Christmas present we could receive.

Yesterday, Zachary and Amy made some Christmas cookies and started making a gingerbread house.

Zachary and Asher hanging out under the tree

"He's asleep and it tickles"

Amy and Zach making cookies

On the Lighter Side

Todd's Posting - Asher has been home for 4 days now and we are all adjusting to each other. We are keeping him on the same schedule as the NICU used; changing and feeding him every 3 hours (2, 5, 8, and 11).

Zachary is really taken with his little brother and looks for ways to help out. We try to promote that sweet spirit by involving Zachary and ask him what he thinks Asher needs when he is crying. There are a few cute stories that make us laugh that I want to share.

• As Amy mentioned in the last posting, during his first diaper change at home, he managed to spray down everyone, including his big brother Zachary. Now, when we go to change Asher's diaper, Zachary runs and puts on his rainboots and then comes over to help. Doesn't matter what he is wearing, PJs or regular clothes, the boots go on before help is offered.
• The other day Zachary was playing on his bike in the garage (it is really cold in Atlanta this week) when he heard his brother crying. He came charging in running like a typical 3 year old with head down, arms plunging, and awkward gait and yelled at the top of his lungs "GUYS! THERE'S SOMETHING WRONG!!!" He then charged upstairs to find his brother and see how he could help. 
• I took Zachary out earlier this week to run some errands. We were gone over lunch so we went to Zaxby's for something quick. Zachary looked at me at the end of lunch and said "I want to go home and see my little brother." What a sweet moment, we will endeavor to encourage that spirit within him. 

Hudson is now up to 5 bottles per day (he needs to get to 8 to be released). It is harder to visit him as much given that we have two kids at home now and we have gone from double coverage to zone coverage (skipping man on man completely).

The joy of the holiday season to all of you.

Asher's Homecoming

After two long weeks of being in the NICU, Asher is finally home with us. One of the best moments of the day was introducing Zachary to his little brother. Much to our surprise, the introduction went smoothly! He started talking to him right away and wanted to push Amy and Asher in the wheelchair out of the hospital and down to the car. On the way home, he would alternate between calling him Asher and Baby A. He also asked if he could show Asher his toy room when we got home and wondered if he would want to play with his trains. As soon as we got home, he ran into the dining room, grabbed the toy musical panda he picked out for Asher a few weeks ago as a welcome home gift and gave it to him. He also enjoyed helping with the first diaper change at home up until when Asher sprinkled on his big brother t-shirt. When Asher's cries come out of the monitor, Zachary rushes upstairs to check on him.

We received some very encouraging news about Hudson today. So far, he finished two bottles today and he even gained 3 1/2 ounces from yesterday. We are hoping he will continue to gain strength to increase his feedings and be home with us soon, too. It was a little sad to leave Hudson at the NICU by himself, but we know he is getting great care and it will give us the opportunity to ease into the transition of having two newborns at home.

Break Out!

We got the call this morning and Asher passed all his tests. We are on the way to the hospital to bring him home. Hudson is going to stay at the spa a little longer to build up his strength.  

Asher discovering his hands

Asher taking his car seat test

Amy feeding Hudson

Breakout?

We received great news this morning. The Nurse Practitioner called and told us that both boys gained weight and improved in their feeding. Asher finished the maximum 8 bottles (1 bottle every 3 hours) on Friday/Saturday morning and if he met other specific requirements he could come home as early as tomorrow (Sunday). The requirements are:

• Continue his 8 bottle feedings again on Saturday/Sunday morning and gain weight
• Pass his car seat test which consists of sitting in his seat for 90 minutes without setting off any alarms (breathing, pulse, oxygen level)
• Not set off any alarms today or tonight

We are super excited to be able to bring Asher home. It does feel a bit surreal that he will actually be coming home with us tomorrow. We are looking forward to changing his diapers, feeding him and holding him whenever we want to. We realize now how much we took all of those things for granted when we brought Zachary home. We also are looking forward to introducing Zachary to one of his new little brothers. Although Hudson is improving he does not have the stamina required and is still only at 4-5 partial bottles per day. We know he will continue to get stronger each day. It will be a little sad leaving Hudson alone in the NICU tomorrow, but we will continue to figure out how to make daily trips to the hospital to spend time with him. Our visits will be a bit harder as they aren't allowing any infants or children in the NICU due to the outbreak of flu in Georgia.

Todd's brother (Uncle Brad to Zach, Asher and Hudson), came in from New York city yesterday to be with Zach this weekend. Today they went to the ZooAtlanta which allowed us to spend more time with Hudson and Asher. Amy was able to give both Asher and Hudson a bottle for the first time since they were born. Both boys looked great and it was really nice to spend a lot of time with them. We were able to speak in person with the Neonatal doctor about the results of the protein test (see the earlier posting) and he said that it could be read either way, in essence the cancer could be a different type than what they thought or that it could be that it is not cancer after all and ends up to be nothing. Obviously this was not a diagnosis and we will still need to follow-up with the Hemo Oncologist but it offers us some portion of hope for our son's condition. We will continue to draw strength from God as we wait for the next appointment with the Hemo Oncologist in about three weeks.

We are so touched by all of the emails and support from everyone. It so hard to articulate how comforting it is. So many people have added our family to their Church's prayer lists. Some of the most touching emails are from neighbors and friends whose children have put Asher and Hudson on the prayer lists at their schools. One of Amy's friends wrote, "Kids praying for kids is a beautiful thing." One of Amy's friends from high school started a facebook prayer page for Asher. We appreciate your continued prayers for Hudson's growth and development and for Asher's upcoming doctor appointment.

Ambiguity

Yesterday the boys were moved into a twin room at the NICU. They now share a larger room which makes it easier when we visit. Even Zach's artwork got moved. We are really impressed with the NICU staff. All of their doctors, nurses and other experts are amazing not just because they are technical experts that can execute flawless medical care, but because to that they add a level of compassion and caring. Its a great combination and they really do an excellent job. Unfortunately Amy ran a brief fever on Wednesday and so stayed away from them for 2 days in case she was contagious.  She is fine now, it was just a short-term thing and she is looking forward to seeing them this morning.

The results of the last test came back and we were told they were "Normal," not to sound crazy but that is not what we were expecting, let me explain. The Hemo Oncologist from Children's Hospital told us earlier that Neuroblastoma excretes a certain protein and they were looking for elevated levels of that protein to confirm that it was Neuroblastoma. Without the elevated levels Amy and I are not sure that we have a clear diagnosis and that it may require more testing. We did a lot of reading on Neuroblastoma and while we don't wish any type of cancer for our child, this one has very good chances for full recovery when found in infants Asher's age. So, more ambiguity than answers at this point. Our follow-up is in a few weeks.

Both Asher and Hudson are growing stronger and increasing their bottle feedings. Asher is up to 6 full per day and gaining weight (target is 8 full feedings per day over two days with weight gain). Hudson is up to 5 partial feedings. He finishes a portion of a bottle and then stops and has to be fed the rest through his feeding tube. If they continue at their current rate Asher will come home first while Hudson will need to stay longer.

Cancer diagnosis

We received a call from the pediatric cancer expert at Children's Hospital that examined Asher. She told us that the evidence in his case would point to the neuroblastoma diagnosis we received on Saturday. However, she wanted to receive the results of one more test before determining the next steps for treatment. She shared that in many cases of neuroblastoma found in infants, the cancer will regress on its own. Part of this may be true but I believe that part of this is testament to the extraordinary gift of life given to us by God and that a new baby is closer to perfection than adults are and can fight off the foreign elements better.

Once she receives the final test results she will be able to exactly determine the next steps, but for now they want to see Asher again in about 2-3 weeks. She had some great news in that once Asher is discharged from the NICU he will come home with us. Praise God! If the cancer has not spread, they will want to see him every 3 months to continue to monitor the size of the tumor to see if it is shrinking or not. If not, then we will need to look at different treatment options.

While the prognosis is good, Amy and I are struggling with a 'wait and see' treatment approach for a few reasons. First, we worry that something worse could happen during the observation period and that we inadvertently cause harm. Second, we both have a bias for action and are very results focused in our lives. Set a goal, build a plan, and execute the plan...right? Waiting feels passive and ineffective. But, we are relying on our faith and will trust in God's plan during this time.  Obviously we want to do what is best for our little guy and will follow the advice of the experts but that doesn't mean we won't challenge to make sure that this really is the best treatment plan for him.

Ways to pray for our family:

• That Asher and Hudson continue to gain strength and learn to eat fully on their own so that can come home before Christmas 
• That Zachary (our 3 1/2 year old) will accept and love his little brothers as real people and not just a concept. He still has not seen them and doesn't really understand what is going on 
• That when we ask the doctors a million questions that they will understand that we are not calling their expertise into question, only that we are probing and testing to ensure that this is the best treatment plan for Asher 
• That Amy continues to heal and strengthen following the loss of so much blood during the birth 
• That our family's faith in our Saviour will grow and strengthen through this adversity in our lives and that we will be a testament to His love

First Week Pictures

Asher sleeping under his yellow knit blanket.
Volunteers make blankets and hats like this and donate them to babies in NICU 

Zachary had a great time with his NiNi

Asher sleeping under his bean bag hand.
Only in the NICU where they are hooked up to all sorts of monitors are babies allowed to sleep on their side. 

Hudson cuddling with Mommy.
His blue knit hat was also a gift from a kind volunteer. He has a matching blue blanket but someone needs to learn to keep his lunch down

Sleeping under the bean bag hand.

Zachary made pictures for his little brothers. These are hanging on Asher's wall in the NICU

Zachary's pictures hanging on his brother Hudson's wall

Aunt Michelle came to visit and snuggle with the twins

Neuroblastoma - Todd's Story

Todd's Posting - On Saturday we all went to the hospital to visit the twins. Zach and my mom met us in the cafeteria and we took turns playing with him outside the NICU as he is too young to go in to see his brothers. By mid-afternoon, we decided to take Zach and run some errands in order to give my mom some extra time with them given that she was leaving the next day. We had just left Target and Carters (trying to buy some preemie clothes) when Dr. Troyer from the NICU called. Asher had an ultrasound on Friday and we had been waiting for the results. She said that there was blood flow into the cyst on his right kidney and that it looked like neuroblastoma, a cancer commonly found in infants and young children. She said that she was referring us to pediatric cancer experts from Children's Hospital to determine the next steps for assessment and treatment options. Although we knew that Asher had a cyst on his right kidney, the early reports we received were that it was a simple cyst and did not appear to be cancerous. Amy had some suspicions while I was more prone to believe the good news.

With one phone call our world was devastated. We both tried to be strong because Zach was in the car, but that didn't prevent us from weeping. We immediately returned to the hospital to see our little boy who was carrying a burden that no infant should have to carry. Both of us did the one thing that we could do, turn to God for support and ask him to heal our son. The rest of the day was raw and an emotional roller coaster. I found myself breaking down every time I tried to talk about it. One moment I would be composed and the next minute I would start to cry for my son.

We both researched the condition and found some great info on both the American Cancer Society website as well as Mayo Clinic's site.

Neuroblastoma - Amy's Story

This is Amy - We had been settling into our new life, juggling hospital visits and trying to keep a normal routine for Zachary. We were so thankful that both Asher and Hudson were progressing with their breathing and feedings. Then, on Saturday, December 4th at 4:00 p.m., we received a call that instantly changed our world. The neonatal doctor at our hospital called to give us an update on the cyst on Asher's right kidney. The diagnosis was neuroblastoma, a very common form of cancer. We had known about the cyst since I was 32 weeks pregnant, but the doctors told us it was a simple cyst on the kidney because the ultrasound didn't show any blood flow through the cyst. Hearing the words neuroblasta immediately brought tears to my eyes. As a cancer survivor myself, I couldn't believe how much sadness and pain overcame me instantly to hear that my newborn had cancer. This has now become one of the most difficult moments of my life. My thoughts quickly turned to a need to do research and know what our plan of action would be. And I started to wonder how I would find the strength to be the mother of a child with cancer. As many of you know, I dedicated some time earlier in my life to volunteering at Children's Healthcare of Atlanta with the Aflac Cancer Center and volunteering as a camp counselor at Camp Sunshine, a camp for children surviving cancer. Ironically, now I would be on the other side, experiencing what it would be like to be the parent of one of these precious children.


We immediately returned to the hospital to visit Asher. I will never forget looking at his face and watching him sleep so peacefully. He looked so perfect, swaddled in his blankets. I prayed for the strength to face what tomorrow would bring for our family. At one point, it looked like he smiled at us.

The doctors didn't have very much information to give us during the call on Saturday. They said the specialist from the Aflac Cancer Center would evaluate Asher in a few days. We are anxiously awaiting the information from the doctor.


We've been overwhelmed with all of the support and kindness from our family, friends and neighbors. At times, it has brought us to tears. The emails, phone calls and offers to help provide so much comfort during this difficult time. With each note, I find that I'm becoming emotionally stronger to face our future. We've also really relied on our faith to get us through this difficult time. I know God has a perfect plan for Asher's life and I'm looking forward to seeing how it is revealed to us.

Background - The Birth of our Twins

Todd's Posting - This is our first posting so we want to bring everyone up to speed with our story. Amy was having a relatively event free pregnancy until the week before Thanksgiving. She didn't feel well on Monday but she had an appointment to see her doctor on Tuesday. Her blood pressure was very high, so they sent her directly from their office to the hospital. I was on a business trip in San Antonio TX and got a call from Amy that she was being hospitalized so I caught the next flight home. They were able to get her BP back down so she was released that night but put on bed rest. We had a quiet Thanksgiving at home. On Saturday night, Amy's BP was elevated but borderline. By Sunday it exceeded the tolerances we were told to look for and so Amy called and they ordered her back to the hospital.

At the hospital, Amy was still showing an elevated BP along with other concerning signs from the blood test. While she was there her random contractions started to get more frequent and more rhythmic...Amy went into labor. There was a brief debate whether to kick her out of it or let her go on, but her medical team decided to let her stay in labor and deliver if she was ready. On Monday, November 29 at 2:35pm, our second son Asher Dennison (6lbs 2ozs) was born. Following Asher's delivery, his brother, Hudson Taylor, flipped. Fortunately, the doctor and mid-wife were able to turn him so Amy could avoid a c-section. Hudson (4lbs 13ozs) was born 8 minutes later at 2:43pm. Because they were preemies at 35 weeks with some trouble breathing, Amy was allowed to hold them for a few minuets then they were taken to the transition nursery for close observation. Later that evening they were admitted to the Neonatal Intensive Care Unit (NICU).

The doctors explained to us that preemies at that gestational age (35 weeks) tended to use their abdominal muscles to breath rather than their chest. We will post video of our sweet little boys that shows you this condition. However, the doctors told us not to worry as most infants would get over that fairly quickly, but that their ticket out of the NICU was the ability to feed sufficiently on their own. Preemies at this age have a few developmental issues, specifically, they don't have the consistent automatic reflex to be able to eat and even if they take a few pulls, they don't have the strength to continue feeding too long.

On Wednesday both boys were transferred to a different section of the NICU with less intensive oversight (lower nurse to baby ratio). This was a very good sign that they were progressing in their development. that was also the day Amy came home from the hospital. She had to stay an extra day because of the high level of blood loss she experienced during the birth. Fortunately she did not need a transfusion but it was close.

One of our current struggles is that our son Zachary (3 and 1/2 years old) hasn't seen his brothers and they are only a vague concept to him at this point. Fortunately his Nini (my mom) came up from Florida to take care of him this week and provided him ample love and attention.

The twins are still in NICU as of today and we visit and spend as much time with them as we can. They are getting excellent care and attention.

Asher is baby "A" on the left and Hudson is baby "B" on the right.

You can link to more pictures and some videos here