World Down Syndrome Day 2018

Did you know that families all around the world are celebrating today? In truth, if we had been asked the same question on March 21st before this year, we would have answered, “Uh, nope.”

Since the addition of a certain someone to our family, we have learned that March 21st is actually World Down Syndrome Day! The date itself is symbolic as it points to the 3 copies of the 21st chromosome in a person with Down syndrome (or Trisomy 21).

While we are only 6 months into our journey in the Down syndrome (DS) community, there have been innumerable opportunities to grow and learn. In true public health nurse and high school teacher style, this means we now have innumerable opportunities to educate our families and friends!

Fast facts about DS:

1. DS can cause several characteristics common to people with DS, such as: low 

muscle tone, upward slanted eyes, smaller nasal bones, a palmar crease, a 

“sandal toe gap”, and smaller stature.

2. DS is a syndrome, not a disease. Accordingly, people do not “suffer” from DS; it’s

just something they have. Also, it is not contagious!

3. DS is not hereditary. There is one specific kind of DS in which the genetic difference 

is carried through from a parent’s DNA, but it is extremely rare.

4. DS is the most common genetic condition in the US, with 1 in every 700 babies born 

with DS.

5. The life expectancy for someone with DS 50 years ago was around 18-20 years. 

Now? It’s over 60 years!

6. A person either has DS or they do not. DS is not a spectrum. DS affects each person 

differently, though it wouldn’t be accurate to say that someone “doesn’t have DS 

that bad."

7. People with DS typically have mild to moderate cognitive disabilities, though the 

degree to which a person’s cognition and speech are affected vary widely.

8. People with DS can go to college, work, live independently, get married, compete in 

beauty pageants, own businesses, etc.

9. People with DS are NOT always happy. They have a wide variety of feelings, just like 

any genetically typical person.

10. DS puts people at higher risk for certain medical conditions, like: congenital heart 

defects, compromised immune systems, hearing/vision problems, childhood 

leukemia and thyroid problems.

Sources: 

https://www.ndss.org/about-down-syndrome/down-syndrome/ 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4729084/

http://downsyndromeinfo.org/ 

A mama’s perspective:

Was there some disappointment or fear in my heart when Silas was diagnosed? Yes. I was sad for the things that I assumed would not be possible for my son: developing passions and goals, attending college, falling in love, etc. However, those fears are almost entirely gone now that Silas is here. He has as much potential as any of our kids. He will meet his milestones, though it might take him a little longer. This just gives us more reason to celebrate each one! With medical advances and educational advances, Silas can absolutely go to college is he wants to or hold down a job or pursue a passion.

The fears that remain are generally in relation to his health. Will his heart defects (patent foramen ovale and possible vascular ring) become problematic as he grows? Will his semiannual blood work show he has leukemia? Will his tiny airways result in pneumonia and hospitalization? Just as I cannot control Connie or Abe’s health, I cannot control Silas’ health. 

We will just do our best to keep him healthy…which means lots of hand-washing and some increased paranoia during flu season.

For now, I just want people to treat Silas as another member of our family. He is our adorable baby who loves to snuggle and laugh and hates socks. 

       He is not here to teach us all some cosmic truths. At least not any more than his brother and sister. Parenthood does not allow us to escape growing and learning and struggling—with or without DS.  Silas may teach us about perseverance in light of different abilities. Abe may teach us about flexibility in light of his need for routines and specificity. Connie may teach us patience in light of her overwhelming emotions and sass.

      Please don’t pity us or apologize to us. Please don't tell us that he's "pretty cute for a Down's baby". Please don't tell us that he'll be "with us forever", as though it's a bad thing.

     We have been blessed with 3 incredible children. Silas is not the most special or least special. He is not the most loved or least loved. Silas is our incredible child. Period. 

A dad’s perspective: (I’ll keep this short, because that’s how I roll). 

I’ve had a few different experiences with Tri-Chromie Homies before Silas. In high school, I got to volunteer with the Special Olympics. Not all of the athletes had Down syndrome, but the ones that did were beacons of joy; not because they were setting any world records with their frisbee tosses, but simply because it was fun. Then, in student teaching, I got to know a student named Theresa. She was more than the smiles I had known before, but she was a personality. She was smart, loved contributing to the class discussion, took pride in filling in her achievement boxes, hated when others were mean, and was a die-hard Angels fan. 

And that’s what Silas is to me; he is his own person who will develop his own quirks as we all do. He’s more than the distance between his eyes; he’s someone who will have a favorite ice cream flavor and TV show. He won’t be playing any pro sports, but maybe he’ll be able to rattle off NFL stats like me. He’s more than a speech impediment; he will have important things  to say. He is more than a third chromosome; he will be the third Howen kid to beg for Ema’s or Nana’s waffles. He is my son, and Ashley and I will do our best to raise him to be a good man.

A man of few words

There is a reason that I am the primary blogger and updater of our relationship. 

Dan is a man of few words. He prefers to keep things short and sweet. 

(That's why he married me, right? Short joke on myself!)

Now, if you get him talking about football or math formulas or some other choice nerdy topics, he can elaborate for hours.

If, however, you want an update of his health or his feelings...his answers will be concise.

(Example: When asked how he felt on his wedding day? "Happy." That's it. One word.)

Considering this attribute of my husband, I find it both perfect and infuriating that his latest oncologist tends to communicate with LESS words than Dan himself. Typically, when reporting on a routine scan or test, we will get an email saying something like:

"MRI ok."

"Liver spot unchanged from last scan."

"Scan looks fine."

Not exaggerating. Dan thinks this is great. I think this is ridiculous. 

(This nurse wife needs information! Give me measurements and hypotheses and detailed findings! Give me the actual lab values!)

Yet, sometimes, the doctor's lack of verbosity can communicate exactly what we need to hear.

"The biopsy did not show any cancer, good news of course. We'll schedule a video or office visit in a couple months."

That's that. 

After months of worrying about new tumor growth and thinking about what this could mean for Dan's health and treatment needs, these two sentences felt like a rush of fresh air. 

I still want to know what these spots are and have already pressed the doctor for more information. 

And, I will still be checking the clouds periodically for the next shoe to fall.

BUT

"The biopsy did not show any cancer."

Praise God from whom all blessings flow.

Thank you for the prayers and concerns and support that so many of you have shown since we found out about the new spots.

Please continue with us in prayer for many more years of health and surprising good news.

(Yes, it is ironic that I spent so many words talking about how few words Dan and his doctor use. I like words, alright?)

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.

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.

Diagnosis: Surprise

Apparently, more than a year has passed since we posted an update here. While I would love to have better documented our family's adventures, we were simply too busy experiencing those adventures.


We've had celebrations:
8 years of marriage, Connie turning one, Abe turning three, a little cousin being born, potty training being accomplished, our backyard being made playable, Dan being hired for another year at Lodi High, 2 half-marathons being finished, and many others.


We've also dealt with struggles:
Months of back-to-back illnesses in the kids, multiple ER visits, familial tensions, periods of spiritual dryness, broken washer/AC/car/gas line, potty training regressions, family-planning and work decisions, anxiety/OCD issues, and others.


For the most part, though, Dan and I have been thoroughly entrenched in the thrills of parenting two toddlers.


Abe is currently 3 1/2 years old, smart as a whip, talking (loudly) ALL THE TIME, emotional and hilarious. His current loves are the Magical School Bus, numbers/letters and the United States. That last one has become a bit of an obsession for him. If the weather man shows a map of the US on the news or Abe sees a globe somewhere, he will shout, "MY UNITED STATES! THAT'S IT!" He'll either grow up to be a geography teacher or the President.

Connie is 18 months old going on 5 years old. She's using a new word at least every day, doing her best to keep up with her big brother and to keep us on her toes. Very little scares her, which she is constantly getting herself in trouble or moderate danger. Oh, and this child is even more stubborn and opinionated than her brother. Dan and I argue over whose DNA is to blame for this.


I (Ash) am still at home with the kids. Not to imply that being a nurse is an easy job, but sometimes, I yearn to go back to work just to get a break from the toddler tornadoes. Alas, we feel that this is where I am supposed to be for now. Eventually, perhaps in the next year or so, I would like to return to an infusion center or an oncology unit. However, I am volunteering as a nurse educator at the local pregnancy resource center, where I work with a team educating young people about STIs and sexual health. I hear some ridiculous things from students., some funny, some scary, many wrong. It may not be oncology or end-of-life care (my passions), but I hope that is helping young people to make smart(er) decisions in regards to their present and future.


Dan is working is continuing at Lodi High, teaching various levels of math and AVID (a college-preparatory program geared toward those with little home support toward reaching scholastic goals). He works long hours, like so many teachers, but continues to be an incredibly present father and husband. It is currently his favorite time of year: football season. Though I could do without the incessant discussions of players and statistics and the fantasy football planning sessions...it makes me smile to see him so excited on Sundays. And Thursdays. And other days that end in -y.


As for his health, that is the true reason I came back to this blog.

Dan gets imaging (an MRI or CT) every 6 months or so to make sure that his cancer isn't trying to cause new problems. For several years now, we have become accustomed to hearing that his scans show no evidence of new disease. As there is no oncologist in their right mind who could look at Dan's history or imaging and declare him in remission, "no evidence of new disease" is the absolute best news we can get this side of Heaven.

He has had relatively few symptoms or problems in recent months, though he needs to be careful in regards to his poor immune system and blood counts and cannot eat quite as much greasy food as he used to be able to do.

His latest check-up scan, however, showed a new mass on his liver. Though it was very small, his oncologist discussed the case with the GI Oncology team at Kaiser and decided that a biopsy was necessary. We had planned a trip to Harry Potter World during his Fall break and moved it up, so that he could have the biopsy before going back to work. The biopsy went smoothly and was done by a radiologist who actually trained under the Stanford interventional radiologist who has been treating Dan since the beginning! The doctor encouraged us that the spot was so small that it would be easy to take care of with a variety of interventions.

Dan had decided that he did not want to tell many people about the new spot before we had a better idea of what we were dealing with. We obviously notified our parents and a few close friends for support, but otherwise kept the information to ourselves.

Well, after nearly 2 weeks of waiting for an answer, the doctor told us that the sample had been sent off for secondary testing due to the "complex nature of the case". That did not give us much encouragement.

Blame my profession or my anxiety or realistic statistics, but I was preparing for the worst. Figuring out how much to tell the kids, thinking about going back to work so Dan could do treatment, lining up arguments as to why Kaiser had to let Dan go back to Stanford, etc.
I even told Dan that we'd probably get the results on Halloween because that's when my family got the bad news about my brother's diagnosis and that would just be fabulous timing. (Cue grand eye-rolling from my husband.)

I was right. We did get the results on Halloween.
I was also wrong. We got good news.

The oncologist wrote to tell us that the biopsy came back normal. As in, no cancer cells.
I have had to re-read it several times because I cannot convince my brain that it is real.
We are obviously rejoicing and happily shocked.

(Of course, I am still waiting "for the other shoe to drop", though I'm really trying to let it go.)

I had planned on breaking radio silence to let everyone know about the recurrence and the plan of attack, if you will.
Instead, I got to write about another miracle.
Praise God, our good, good Father.

This is the room.

I'm in my favorite room in our house: the nursery. It's bright and warm in the mornings thanks to the sun rising through the hall window. It's quickly dark and cool in the evenings, perfect for sleeping babes. 

This was the first (and only?) room we decorated when we moved in to the house two years ago. This is the room in which my first baby became a toddler far more quickly than I had imagined. 

This is the room in which I transformed from an anxious first-time mama counting baby breaths to a (slightly) less anxious mama of two. 

This is the room in which I have cried and laughed and fretted and swooned over baby antics. 

This is the room of first fevers and first teeth and first nightmares. This is the room of first Christmas mornings and first birthday grins.

This is the room in which I have prayed for safety and sleep and salvation for my sweet ones.

This is honestly the room I never believed that I would have.

Sometimes, I need to be reminded of the miraculous realities of my life. 

My family came to know Christ because my parents wanted to keep my brother and I out of trouble by going to church.

My brother should be dead by now since he never did receive the heart-lung transplant the doctors said he needed.

I should have never met my husband or several of my closest friends because I was headed to Stanford--not a tiny Christian university called Biola.

My husband should also not be alive because Stage 4 acinar cell carcinoma with mets is not something someone survives for very long.

I should not be able to run or carry children because mental illness depleted my body of nutrients for many years.

The baby in my arms and the toddler listening to my husband's bedtime story should not exist because chemotherapy plus radioactivity plus my PCOS do not make fertility probable. 

Put quite simply, this room--and all the moments that led to its existence--is miraculous.

This is the room for which I yearned and the room for which I can never give enough thanks.

Praise be to the LORD, the Giver of good gifts and abundant miracles.

Thank you, God, for this room.

Connie

As I write, there is a tiny baby nursing herself into a milk coma on my chest. It's hard to believe that just about a week ago, I wrote the last post with no idea that our baby would be making her way into the world so soon!

Constance Grace Howen was born on April 24th at 9:03pm after refusing to wait for us to get to the hospital. As some of you know, she was born on our bathroom floor in a very unexpected home delivery.  Fortunately, Dan's mom, Jamie, had already arrived to watch Abe, so we had some help until the paramedics arrived.

Note: I have been asked for the full birth story by lots of people. Rather than write it here where some people don't want to know the "gory" details, I'd like to just email the story to those who would like to know. Email me at ahowen37@gmail.com.

We spent the weekend at Lodi Memorial, where we were treated like VIPs and stayed in the same room in which Dan and all of his siblings were born. 

We came home Sunday afternoon to a very excited older brother, who is still learning about being gentle! The transition has been fairly smooth. Abe is extremely hyper and fighting all kinds of sleep. My mom stayed with us for first few days, so Abe was in seventh heaven.

Both sets of grandparents and my brother and his fiancée met the baby at the hospital that night and have been wonderful about helping us with Abe.

Connie is doing great, though she is a teeny little girl compared to her brother. At 6 pounds 10 ounces and 18.5 inches, she's nearly 2 pounds smaller than Abe was (Considering how she entered the world, I'm extremely grateful she's smaller!). Seeing as she eats ALL the time, hopefully she'll get some chunk soon. We're watching her weight gain and bilirubin for some mild jaundice, but otherwise she's doing fantastically. For the first few weeks, we also need to keep an eye out for infection, as she's at higher risk. 

Mama is also doing well. A bit tired and sore, but feeling much better than I did after having Abe. I didn't lose much blood, fortunately, so my fatigue isn't terrible. My main focus is eating and drinking enough to nurse the munchkin. Hopefully, my energy will be good enough to keep up with Abe next week when Dan goes back to work.

Dan is a happy and exhausted dad. He's helping a lot with Abe and getting to know Connie. Unfortunately, he doesn't qualify for paternity leave since he is so new at his job. The district is at least letting him take an unpaid short LOA until Monday. Then, we have a month until summer break. We will all be ready for a little rest by then!

Thank you for all the prayers and support and encouragement. Please continue to pray for everyone's health and the safety of our little girl as she grows. Also, prayer for energy and endurance as Dan goes back to work and I watch the littles.

Join us in praising the LORD for His protection and constant grace in the birth of our little Connie!