Friday, November 10, 2017

Boring is not an option.

Anyone who has been following our story for any length of time can fairly comfortably realize that our lives are very rarely boring.
Now, I don't mean that we are jet-setters traveling to all corners of the world or camping in the American wilderness or winning awards for new discoveries.

No, no. For us, adventures and trials and excitement tend to appear on our own doorstep.

This year marked 10 years since Dan's diagnosis of Stage 4 pancreatic cancer. The simple fact that he is still alive is nothing short of a miracle, one for which we give thanks daily. However, the years of treatment have left scars--both visible and invisible.
Dan has gotten imaging (CT scans or MRIs) every few months for years. Last year, we had a relapse scare involving a new spot on his liver, but the biopsy was inconclusive. We entered another "watch and wait" phase, which perhaps lulled us into some blissful forgetfulness.

A few weeks ago, another routine screening MRI showed 2 new spots on the liver. Very small, but similar in appearance to the one from last year. A biopsy was scheduled and then cancelled once the interventional radiologist determined that he could not safely or accurately hit the spots due to their size. Dan's case was presented to the tumor board, who recommended that the radiologist instead biopsy the larger tumor from last year again. Regardless of biopsy result, the tumor board and the oncologist felt confident that the spots represented new metastases.

As of right now, we still do not know what those spots are, as the second biopsy has not been scheduled yet. Dan was given permission to wait until Christmas break for the biopsy to avoid having to take time off of work. The masses (malignant or not) are growing very slowly, deeming their treatment non-urgent.

So, we come to this week. Dan texted me on Monday from work to let me know that he wasn't feeling right. Chills, back pain, low appetite. By the time he got home, he had a fever of 102.6. He crashed on the couch under the assumption that he had picked up a virus from his students. When he awoke, he had a distinctive yellow cast to his skin and told me that he had now had a yellow tint to his vision.
We went to his primary physician on Tuesday, who ordered a full work-up: blood-work, chest x-ray, kidney x-ray, urine analysis, etc. We knew his liver was angry since he had woken up more yellow, and his fever was staying high. What we didn't expect was a phone call from his physician later that afternoon sending him to the emergency room. His bilirubin (the substance that is responsible for jaundice) was 10 times higher than his normal. Several other labs were frighteningly high, so off to the hospital he went.

Unfortunately, the source of the infection or cause of the problematic liver function was not easy to find. Scans showed no blockages in the liver. The spots that needed to be biopsied were not big enough to be causing this kind of problem. His septic work-up wasn't showing any clear sign of infection. Specialists were consulted, new tests ordered, antibiotics administered, IV fluids given to flush out the excess bilirubin. Still, there were more questions than answers.

Because it is cold and flu season, the kids could not visit Dan. Additionally, since I am still nursing Silas frequently, I couldn't leave him for an extended visit to the hospital, which was an hour away. Dan's mom was incredible helpful and took him to the ER and spent time at the hospital with him.

It was frustrating not being present with Dan through all the tests and conversations with the doctors. However, he eventually started calling me and putting me on speaker phone whenever a physician came in to see him. Plus, Jamie could be another pair of nursing eyes and ears.
It seemed as though Dan was making the medical team nervous because of his history, and no one wanted to commit to a plan or diagnosis. More than once we commented that it felt like they were dragging their heels, leading me to light a fire under some medical tushes.

Finally, yesterday, the GI specialist actually came in to see Dan, rather than just consult over the phone. He determined that one of the tests that the team was considering (an ERCP), would be more risk than benefit and probably unnecessary. Though a cause for all of the symptoms was not clear, this doctor felt comfortable with Dan going home so long as he stayed fever-free for at least 24 hours and his lab values were trending down.
We were cautiously optimistic and fairly impatient, as Dan actually felt pretty good by this point and was frustrated about missing work and being away from his family. (I was also ready for my partner in parenting to be home! These kids are nuts!)

As of this morning, the main doctor has decided that Dan can be discharged. He'll be on new medications, he'll be missing more work until cleared next week, and there are a variety of tests and labs he'll need to have done in the near future. He's also still yellow, so there's a constant visual reminder of how much is going on internally.



The kids are making pictures and welcome home signs as I write this.

God-willing, Dan will be home and healthy for a long while.
Hopefully, we won't have to explain to the kids about worsening health issues or relapsed cancer.

Even so, there is still the quiet voice of his first oncologist telling us that we should reconsider having children, as it "wouldn't be fair to them".
There is still the thought of one of my nursing classmates leaving behind his wife and 5 children after he succumbed to cancer.
There is the overwhelming task of meeting the needs of all 3 kids at once alone and imagining this being the new normal.

Only God knows the measure of Dan's days.
Only God knows the measure of all of our days!

For now, I'm going to let the glorious busyness of parenting distract me from the fears that suffocate me if I allow them.

For now, I will help the kids make their signs and be excited about having my husband home.

Please pray with us that Dan continues to normalize, that his biopsy reveals benign masses, that the new medications will be able to control troublesome symptoms, and that Dan can annoy us with his brilliance and ridiculous love of stupid puns for many years to come.

Monday, October 23, 2017

The Story of Silas

Before Dan and I got married, we spent some time thinking about what our future family may look like. We weren’t sure for a while if it would even be possible to have children, thanks to Dan’s chemotherapy treatments. Regardless, we hoped that we’d be able to have at least one child—God-willing, even 2 or 3. 

After we had Abe, it was fairly simple for us to decide that we wanted him to have a sibling. Fortunately, God apparently agreed with this decision and blessed us with our Connie Bug.

Now, I was raised as one of two kids, and Dan was one of three kids. Life was falling into a pretty steady rhythm with just our two. Sure, parenting had hard days, but our little team was doing a pretty good job. 
The questions became: Do we want to add to our family or move forward in different areas? Should we focus on shifting from me at home to me back at work? Could I train for a marathon at this point? Were we going to homeschool or send the kids to public school? Should we become more involved with community activities like sports or church groups?

Well, come January, our decision became a lot simpler when I was staring at two pink lines…

Early pregnancy went as expected: I was exhausted, nauseous and getting my butt kicked by migraines. But, the baby was growing happy and healthy, as far as we could tell.
We had done all the genetic testing and blood work with the other kids, and everything was fine, so we decided to just skip the extra trip to the lab.
Later, though, when we had a our nuchal translucency scan (an ultrasound that measures the skin behind the baby’s neck, which is bigger in some genetic diseases), I couldn’t shake a weird feeling that I needed to do the blood work. In all likelihood, the minor abnormal value found on the scan was nothing to worry about, but seeing some reassuring numbers would really make this anxious mama feel better.

Fast forward to May, when an unexpected call came in from Kaiser’s genetics department. My blood work had actually shown that we had a 1/57 chance that our baby had Trisomy 21—also known as Down Syndrome. The doctors wanted me to come in for a more intensive ultrasound called a Level 2 ultrasound to see if there were any “markers” that would point us to a more definitive answer.
At that ultrasound, we found out that we were having another boy and that he did, in fact, have a few concerning findings. A short nasal bone, a strange bright spot in his heart and another in his bowel. These findings could mean nothing, but taken together with my preliminary blood work, they painted a picture that needed to be investigated. 

The genetic counselor gave us two options: another lab test called the Noninvasive prenatal test (NIPT) or an amniocentesis. The NIPT would require just a blood draw from me and would be a 99% accurate screening for Down Syndrome. The amnio would would be 100% diagnostic, but would require a needle aspiration of amniotic fluid through my uterus. The amnio would also carry a small risk of miscarriage.
Dan and I decided that the risks weren’t worth the 1% difference in certainty, so I had the NIPT labs drawn that day.

One week later, on May 16th, I answered the call from the genetics counselor. Though I somehow already knew what she would say, her words still came as a shock. 
“Your NIPT results show that your baby has a 99% chance of being born with Trisomy 21.”

It was official. Our son had Down Syndrome.

The following weeks included more conversations with geneticists, pediatricians, my OB team and a cardiologist. Nearly every medical professional we spoke with was encouraging and supportive, giving us information about all of the new opportunities for people with Down Syndrome. Between early intervention with physical therapists and occupational therapists and dozens of advocacy groups, Down Syndrome is no longer a reason for despair and heartache. (We'll explain more about DS at the end of this post!)

Only the pediatric cardiologist attempted to discuss termination of the pregnancy. This was never an option for us. Our son may be chromosomally different, but he was still our son. 

From a physical standpoint, our baby looked very healthy on the ultrasounds. No birth defects or growth restrictions were noted, so my pregnancy would proceed much like any other pregnancy. I would have a few more ultrasounds to make sure that he was growing normally and that my placenta looked healthy, but otherwise? We wouldn’t truly know anything more until after he was born.

The last months of pregnancy went fine. We flew to Vermont and back for a wedding, I drove to LA and back for a concert, and we managed two crazy kids. By September, I was VERY ready to not be pregnant anymore, but Silas didn’t show any signs of wanting to greet the world until when a contractions started up with a vengeance at an OB appointment. And then they stopped. For a week. By my next OB appointment, my doctor was scheduling my induction at 39 weeks to prevent another accidental home birth. Silas needed to be born in a hospital with a pediatric team readily available.

So, we geared up for Saturday, September 30th, being the day we would meet our new son. I was not thrilled about the prospect of an induction, but tried to resign myself to doing what was best for Silas. Still, the realization that labor was imminent and that we were actually going to become the parents of a child with possible health complications hit me like a ton of bricks. Tuesday night brought a panic attack and little sleep, though also lots of prayer and some unexpected snuggling with a sleepless Connie. 

Wednesday? No signs of labor. It was a normal day of laundry and toddler-wrangling and trying to not be impatient or cranky.

Thursday? I woke up to contractions. I didn’t say anything to Dan at first because he was getting ready for work, and I figured they would just go away. They didn’t. They got stronger and more regular. I walked to the bathroom—slowly. It was go-time. 

We made fast work of getting ready, calling Dan’s mom to watch the kids, Dan calling off work,
and driving to Sacramento as we were still prepared for a fast arrival like Connie. Unfortunately, Silas had his own plans to make us wait. I was only dilated to 3 cm, but with my history and Silas’s diagnosis, they admitted me to L&D. Labor stalled shortly afterward, so we walked dozens of laps around the unit trying to avoid pitocin. 

Finally, around dinner time, contractions reappeared. I kept postponing getting rechecked by the midwife, for fear of being told that I wasn’t progressing. By 10pm, I could barely move. My amazing nurse noticed a difference in my demeanor and movement, called the midwife and started prepping the room. I was able to lay down for the midwife to check my progress but failed drastically in getting back up. Within 20 minutes, my water broke and a few minutes of pushing resulted in the birth of Silas Benaiah.

When they laid him on my chest, there was no doubt in my mind that his diagnosis was correct. Silas looked so much like Abe when he was born, but his eyes were distinctively different. He was dusky and breathing, but not well. The pediatrician had been there for the delivery and took him to the warmer to begin her assessment. He finally began to cry but had trouble keeping his oxygen levels up. I was allowed to hold him and let him try to nurse as long as blow-by oxygen was near his face. Other than his oxygen levels, the pediatrician told us that there was very little evidence of Down Syndrome traits. No heart murmur, only mild hypotonia (low muscle tone), and proportional limb lengths.

As the night progressed, Silas had to spend a good deal of time in the Special Care Nursery (low-level NICU) because he was still struggling to maintain his temperature and oxygenation. I had sent Dan to go to sleep so I could take the night shift, as the adrenaline from delivery was still keeping me amped. Plus, since the delivery was unmedicated, I was free to go back and forth between the nursery and my room. 

The first 24 hours of Silas’ life were difficult. He nursed very well—when he was awake. This caused issues as his blood sugar had become an issue as well. He ended up needing a couple doses of rescue dextrose and formula supplementation to carry him through while we awaited my milk to come in. 

Luckily, Silas was allowed to room-in with me in postpartum by the afternoon, which meant Abe and Connie could meet their little brother. The meeting was hectic and sweet. I had missed my big kids, but they were having a blast with their Ema. They were instantly in love with their new baby brother.

By Saturday, his temperature, oxygen and blood sugar issues were resolving. He remained stable throughout the night and had an echocardiogram to check for heart defects on Sunday morning. With the cardiologist’s and neonatologist’s blessings, we took our little guy home at lunch-time on Sunday.

So began our life with three kids!


A note about Down Syndrome:

This post may have come as a surprise to many, as we did not disclose Silas’ diagnosis publicly before his birth. This was not due to embarrassment or shame, but rather we wanted to have time to privately prepare our hearts and minds for his arrival. There are many misconceptions about Down Syndrome, which lead people (well-meaning or otherwise) to say unkind or unsupportive things. Keeping the diagnosis to ourselves, our families and some close friends allowed us some peace without having to battle others’ opinions.

We are not sad or disappointed with our son or his diagnosis. Silas is not a mistake. He is made in the image of God just like our other kids. In fact, we chose Benaiah as his middle name because it means “God builds up” or “built by God”.

Will life be different? Yes. 

Will we learn a lot? Yes. 

Will this affect Connie and Abe? Yes! Studies have consistently shown that siblings of children with DS become more compassionate and open-minded and caring than other children.

Will there be difficulties and struggles? Yes, but that would be true with the parenting of any child.

Please DO NOT express sadness, pity, or regrets for our new circumstances. 

Please DO celebrate our new child with us! He is a blessing and we are overjoyed to be his parents.


For those who do not know, DS is a genetic abnormality that occurs spontaneously and without cause at conception. There is nothing that could have been done to prevent it, and nothing Dan and I did caused it. DS is not a disease or contagious in any way.

Simply speaking, we all have 23 sets of chromosomes, which are the blueprints for our bodies. Down Syndrome is also known as Trisomy 21 because there is an extra 21st chromosome—3 instead of 2. This extra chromosome is present in every cell of the body and is responsible for the traits and abnormalities common to DS.

Each person with DS is affected differently and to a different degree. Cognitive disabilities, low-muscle tone, upturned eyes, heart defects and various other physical characteristics are common. 

Silas has the distinctive almond-shaped eyes, though the rest of his little face is almost identical to his big brother as a baby. He does have a mild heart defect (called patent ductus arteriosis), but the cardiologist is hopeful it will heal on its own. Silas also has mild hypotonia seen mostly in his neck strength—however, he is much stronger than expected. He has already rolled over at only 3 weeks!

We will not know how his cognitive abilities have been affected until he gets older. Until then, we treat him as we would treat any new baby. He will get physical therapy and occupational therapy beginning in a couple months to help him as he starts trying to get mobile and as he begins eating solids.

He nurses very well and is gaining weight normally. As Abe frequently tells us, Silas eats and poops and sleeps a lot. He is also quite good at being adorable, but I am severely biased. 

We are excited to see what the future holds with the new addition to our family, even though we know some of it will be challenging.


Please pray with us for wisdom and patience and joy as we raise our kids.