Dominique’s words touched my heart when they came across my inbox … “In addition to our infertility struggles we experienced a traumatic first several months with our second born, Thomas. He is now a cancer survivor. Born with cancer. And lives to eventually tell his story…”
Today Dominique is sharing her story as a mom who found out her son was born with cancer. I am so thankful for her willingness to share!
My husband, Troy, and I both had always wanted children. We tried for years on our own to get pregnant and after several other infertility treatments the one that finally worked was IVF. Through our first round of IVF we had several healthy embryos that we were able to freeze. Our first son, Braxton, was born in 2014 and a little over a year later we decided to take a chance on one of our frozen embryos. I got pregnant on the first try! We were so excited (and of course cautiously optimistic) to bring Baby #2 into the world.
We found out early on that I was having another boy! Our first son was breech and I ended up having a cesarean delivery. My ObGyn said I had healed nicely and said that I could try a VBAC (vaginal birth after cesarean) if I chose to. I was thrilled and nervous. I really wanted to be able to experience a natural birth and have a faster recovery. Running after my toddler wouldn’t be possible with a healing cesarean incision. So we decided to try for a VBAC and then hired the same wonderful doula that assisted our first birth. I felt more at ease knowing that she would be there during my first ever labor.
The night that I went into labor felt like text book. I woke up in the middle of the night to use the bathroom, my water broke while I was sitting on the toilet, I called the nurse and then woke up my husband. On the outside I was very calm as my husband drove me to the hospital. But inside I was a little anxious. What will the hard labor pains feel like? Will I be able to do this without drugs? Will I be able to push him out? Well, the rest of the night did not go like text book. My contractions started getting stronger and 36 hours later, I was still having contractions but not strong enough to be in full labor. I had been enduring the pain for so long that I was completely exhausted. Any time I tried to lay down to rest, the contraction would start and it hurt too much to lay down. I finally asked for some pain medication. It didn’t have much effect so I gave in and had an epidural. I was then in bliss and forced to lay down on the account of my legs being numb. Unfortunately, this slowed my contractions way down. The only option (other than cesarean) was Pitocin.
The Pitocin worked. My contractions picked up and I was soon in full labor. With my husband, my best friend and my doula at my side, I pushed for hours until I felt like my eyeballs were going to pop out of my head (and later found out my face turned purple and swollen). The doctor ended up assisting with a vacuum and that worked! After about three assisted pushes, our little Thomas was born! They placed him in my arms briefly before cleaning him up and then they handed him to me for some skin to skin contact. It was a very strange moment. I was happy because he was out but I was exhausted and looking down at our new baby boy we noticed he had a distant look on his face. I thought, “he must be as exhausted as I am”. They had to take him to the nursery because his oxygen was a little low. They kept him there for monitoring with oxygen assistance until his pediatrician arrived.
And this is when our world got turned upside down. During his evaluation, our pediatrician felt a hard mass between his diaphragm and his bowels. They did an x-ray but could not determine what it was. He believed that the mass is what was causing the low oxygen as it could be impeding on his lungs. He put in the order for him to be transported to Tacoma General hospital where they have a NICU (neonatal intensive care unit) and advanced imaging equipment for infants. My husband and I were in disbelief. We couldn’t believe that our son was about to be transported for emergency care. What is wrong with our son!? What is inside him?!?!
His doctor suspects that it could be meconium that leaked from his bowel and hardened. The meconium won’t hurt him as it is sterile, but it will need to be removed with surgery! He will have an MRI when he gets to the other hospital to confirm their suspicion. Unfortunately, because I had antibiotics, they said I had to remain under my ObGyn’s care for 48 hours. So, my husband would be following Thomas to the other hospital. It felt like an eternity for the transportation unit to arrive. Troy was getting very impatient knowing that our son could possibly be in danger. But they finally arrived and they encouraged us to hold and kiss him goodbye before they took him. I was very thankful for that.
Troy called me a short while later to let me know that they arrived safely and that a team of physicians had already been assigned to his case and were working on his diagnosis. I was able to pass time by napping in my hospital bed as I recovered. Troy called me again within what seemed a couple hours. He said he met with one of the surgeons on the team and she explained that they think he has a tumor. My heart dropped to the floor. That’s not what I wanted to hear. I urgently asked what the next steps were. They would be engaging with a children’s oncologist for final diagnosis.
My ObGyn came in to check on me. I told him what happened and he dispatched me right away since I was recovering well. I headed straight for Tacoma General to be with Troy and Thomas. The NICU there was immaculate and everyone was very nice. Since I was only with Thomas the first few hours of his life before he was whisked away, I hadn’t done much breast feeding with him. They had just fed him some formula right before I arrived so they had a breast pump available for me. Over the next couple hours I pumped, stared at Thomas with hopefulness and waited anxiously for the doctors to provide us with a diagnosis. Poor Thomas had a needle in his scalp for blood draws, wires taped to his body for monitoring and tubing taped to his face for oxygen. They let us hold him any time we wanted. It was awkward. I was actually nervous for some reason. I didn’t want to hurt him by accidentally tugging on one of the monitoring systems attached to him. So mostly I just stared at him.
When his oncologist arrived, he introduced himself and then took us out to a computer to show us some images. He diagnosed Thomas with Congenital Neuroblastoma… cancer… CANCER!!! The cause of this cancer is unknown. He had several tumors. It started from the adrenal gland and spread to his liver. Typically, the prognosis for this type of cancer in a newborn, is very very good (98%). The tumor is usually aggressive and responds very well to low doses of chemo. Many times, if the tumor is small enough they won’t give any treatment at all and will just monitor to make sure the tumor shrinks on its own but his tumor was large enough to warrant immediate chemotherapy. Because it was impeding on his lungs they wanted to start chemotherapy before the biopsy! This seemed so bold, but we understood that the clock was ticking and agreed to the chemotherapy. Troy is a cancer survivor, so this diagnosis really hit him hard.
Once he was off the oxygen (which I think was the next day) he was moved upstairs to the Mary Bridge Children’s hospital. He got a nice room with a window by himself in the newly renovated wing of the hospital. He had lots of wonderful visitors from friends to family members. The next few weeks were busy but there was also a lot of sitting around and waiting. Waiting for the chemo, waiting for the nurse to give us an update, waiting for the biopsy, waiting for the results of the biopsy, waiting to see how he responded to the chemo… waiting to take our baby home.
Also, during that time, we met with the Nurse Navigator who meets with us daily to check on us and introduced us to the financial advisor. This financial advisor talked to us about insurance, out of pocket expenses and alternate ways of getting funds to pay for Thomas’s treatment. She encouraged us to start a personal fund-raising campaign so we decided to use GoFundMe. And over just a few weeks we raised over $8000! It was amazing! (note: if you do GoFundMe, know that there’s a fee for withdrawing your money). We had no idea that so many people would be so generous! A few of those generous donations were from our friends’ parents (so people that we didn’t even know)! In addition to a campaign, the financial advisor suggested we apply for their financial assistance. We told her we didn’t think we would qualify because we both work full time jobs with fairly good salaries. She said, it doesn’t matter. She said they receive grants and donations to help families and it sometimes goes unused. So, we applied, and they approved us! So in addition to the GoFundMe, we had additional help with our finances! This was a big relief that we could stop worrying about how to pay for treatment and just focus on Thomas.
His biopsy went well. It took a week or so for the results to come back and confirmed that the tumor was indeed Neuroblastoma. He was responding well to his chemotherapy. The nurse posted his stats on a white board and started a new line each day, so we could see the trend of how the numbers are rising or falling. This helped us to understand his response.
And finally, we were told he could go home!
They would send an in-home nurse once a week to change out the dressing for his central line. Our tasks at home would be flushing the line and giving him a couple of Rx’s. We had training on how to flush the line and administer the meds. And his next cycles of chemo he was able to come home the day after treatment instead of waiting a week like this first cycle. He also had an MIBG (gamma-ray) scan to check how active the tumors were and to see if there were tumors elsewhere in the body that weren’t picked up by the CT. Once we got him home, it was such a relief. It felt soooo good to have him home. But I must admit we were a little nervous knowing that his immune system was weakened from the chemotherapy. We had our house deep cleaned before we let him in the door.
He was eating good but threw up a few times so the nurse scheduled to weigh him a few days later and had the doctor prescribe anti-nausea medication. He had genetic blood testing done and the results came in favorable. Each time he was scheduled for a chemo treatment they would do an abdominal ultrasound first to check the size of the tumors. After the first round of chemo, the oncologist could feel the difference from the outside! And each round the tumors shrank even more. At only a month old he had already been through two rounds of chemotherapy!!! Before his third round of chemo, he had to stay in the hospital for a few days because of a perianal abscess. Poor guy had to have it sliced and drained. Eeeek. He did really well and then for the next few weeks we were instructed to wash his butt with a squirt water bottle for diaper changes to flush it and we couldn’t use wipes! That made diaper changing fun… not!
On his third round of chemo, his blood pressure dropped. It was one of the side effects of the drug called Etoposide. After the infusion was complete they put him back on IV fluids to raise his blood pressure back up but each time they tried to take him off, it went back down. I ended up staying the night with him and by the next afternoon his blood pressure was normal. I really think it was because I stayed there with him. His platelets were up and down each chemo cycle but this time his platelets were too low and so he had to have a platelet infusion. This really made us nervous but he reacted perfectly to the infusion. Phew!
Before his fourth round of chemo, he had an ultrasound and they determined that his tumors shrunk more than 50% of their original size. They will continue to shrink on their own without any additional treatment, so he did not need any more chemotherapy! It was the best day ever! He had another MIBG scan to verify no additional tumors plus an audio and echocardiogram to check for hearing and heart side effects. All results were good so he finally had his Broviac (central line) taken out! For the first year after treatment he had monthly checkups and then quarterly checks the second and third year. Over the next few months we had to be super cautious until his immune system rebuilt so we rarely took him in public places.
Today, Thomas is a sweet and sassy little two year old that loves to cuddle, dance, loves the water, is a major dare devil and loves to pester his brother but at the same time wants to be just like him. I still can’t believe that we went through trials of having a son born with cancer. Some days I cried, but most days I just had to be the strongest mom that I knew how to be to keep my sons hopes as high as possible. Yes, he was a baby but he had to have known something wasn’t right and we were there to help him. If you are a parent or family member with a child diagnosed with cancer, remember, you are the best advocate your child has, so be strong! And also remember to take care of yourself!
Dominique is a wife of a hard working husband and a mother of two perfect boys. She and her family live in the beautiful Pacific Northwest. She works full time as an IT Specialist and on her downtime enjoys cooking, watching movies with her husband, cozying up in front of the fireplace, building train sets with the boys, and watching them grow! You can follow her blog and connect with her on Twitter @nicagraves,
PPS – If you’re ever looking for a devotional on living life while in a waiting season, check out the devotional I co-authored called ‘In the Wait’!
PPPS – Check out the other contributions from this series, including What It’s Like: to experience multiple IVF cycles, raise a child with special needs, use an egg donor, be a DIY-er and home style blogger , be a NICU nurse, Live fully in singleness while still hoping for marriage, suffer with endometriosis. experience depression, start a company, have a micro preemie, lose a parent, be childless not by choice, have a spouse with a chronic illness, fund raise for fertility treatments, have a traumatic birthing experience, take a natural route with infertility, be on a reality show, go through the adoption process, have male factor infertility,be a stay at home mom, be an entertainer, be given a Down syndrome diagnosis for your child , experience multiple miscarriages, have a surrogate, experience a late pregnancy stillbirth, be a police officers wife, be a working mom , be a breastfeeding mother, have weight loss surgery, donate and adopt an embryo, be on a reality show, go through the fostering process, throw a themed dinner party , have PCOS, have had a cancer diagnosis,be a high school teacher,love someone who’s experiencing infertility, be a step-parent, be the husband in a couple experiencing infertility , experience secondary infertility, experience postpartum anxiety, experience a traumatic loss, and be a single mom. Stay tuned for many other amazing topics to come every Tuesday and Friday here!