World Prematurity Day

I am taking a break from talking about lung cancer to write a post in honor of my amazing daughters. These little fighters came into the world at 32 weeks, after several almost-deliveries (and almost-miscarriages) in the preceding few months. Mikaela pulled the ejection cord, as Jason likes to put it, and they were delivered by emergency c-section (like, SUPER emergency c-section) on March 8, 2011.

I had been in the hospital on bed rest since 28 weeks because of placenta previa. I am very thankful that I was in the hospital that night, since I had a massive bleed and the doctors got me from my room, into the surgery suite, and got both girls out in under 10 minutes.

Man, I just can't do anything the easy way, can I?

The girls spent the next 4 weeks in the NICU, hooked up to tubes and monitors. I remember looking at their tiny arms and wondering how in the world the nurses got an IV into those veins. To this day, when I am getting poked (often repeatedly) to put in an IV, I think back on what my little girls went through when they were too small to understand what was going on. If they endured it, who am I to complain?

Thank you, Mikaela and Autumn, for teaching me how to fight, how to thrive, and how to beat the odds. You are growing into such fabulous little people who keep me laughing and bursting with love everyday. I am so lucky to be your mom.

PS - I really didn't want to talk about cancer stuff in this post, but I would be remiss if I did not mention that I got my scan results and they were stable. No more shrinkage detected, but no growth either. As I explained in An Exciting Time to Have Cancer, stable is one of the good results of a scan. And if you had forgotten that I was waiting for scan results, then just forget about this PS and go back to admiring my wonderful little girls.

An Exciting Time to Have Cancer

I am realizing that I have been, perhaps, too delicate in describing my health situation. People keep asking me questions that indicate that I need to be more blunt about the current state of affairs. 

So here are the bold facts, no holds barred:

I have Stage 4, metastatic adenocarcinoma, a non-small cell lung cancer (NSCLC). It is incurable, and considered terminal with an average life expectancy of eight months. Since there is no cure, there is no end date to the treatment.  I will continue to have chemo (or other treatments) for the rest of my life. There is no plan to do surgery since the cancer has already spread throughout my body, making removing it from my lung pointless according to current thinking on the subject.

As of my last CT scan, my current chemo regiment appears to be working. This is a great thing, but it is by no means permanent. The tricky thing with cancer is that is can mutate and become resistant to the chemo at any time. 

I am currently on a triplet of chemotherapy drugs: Carboplatin, Pemetrexed (brand name Alimta), and Bevacizumab (brand name Avastin). The standard treatment is to do four rounds with this trio (assuming it continues to work) and then go onto maintenance of Pemetrexed for as long as that keeps working. 

At my last appointment, my oncologist suggested that I do two additional rounds of this powerful trio since it seems to be working and I am tolerating it. I am totally on board with this decision, and actually walked into the appointment armed with a list of arguments to convince her of this approach. I was pleasantly surprised when she suggested it before I had a chance to launch into my pitch.

Let me back up for a moment and clarify what it means for the chemo to "work." There are essentially three possible verdicts from a CT scan.

1. The cancer is shrinking

2. The cancer is stable, meaning neither shrinking nor growing

3. The cancer is progressing, meaning the current tumors are growing and/or there are new metastases. 

My first CT showed verdict #1. Yay! In order to continue on the current line of chemo, you need either verdict #1 or #2. If you get #3, then you need to pursue other options. These take the form of other chemotherapy combinations or clinical trials. 

And that brings me to the title of this post.

I am discovering that a whole lot has changed in the 20+ years since I had treatment for my childhood cancer. Not only do they have MUCH better methods for managing all the terrible side effects of chemo, the whole way of thinking about treatment is undergoing an interesting and exciting shift.

It used to be that the three tools for cancer treatment were to cut it out (surgery), burn it out (radiation), or kill it with poison (chemotherapy). While these three are still used extensively, there are a few new approaches. For example, one of the chemo drugs that I am on, Avastin, is technically not chemo at all, but biologic therapy. Rather than killing the cancer outright, it starves it by preventing it from creating blood vessels to feed the tumors.

Another very exciting treatment is based on finding the driving mutation of the cancer, meaning figuring out what went wrong to make it grow out of control, and stopping that mechanism with a targeted drug. There are two well researched mutations for NSCLC, EGFR and ALK. My cancer does not show either of those mutations, but there are many others being researched currently. If we find my driving mutation and match it with the correct drug, controlling my cancer could involve a daily pill, with fewer side effects than chemo.

The third, and perhaps most innovative line of research involves using the patient's own immune system to track down and kill the cancer. There is a trial for this therapy going on in Karmanos, just down the road in Detroit. My doctor and I discussed at my last appointment that this is a possible option for me if/when the time comes to switch to a new plan of attack. 

So, although the prognosis of my disease is pretty much horrible, I do not feel entirely foolish for remaining perpetually optimistic. With all the changes going on, the statistics are becoming outdated. Also, I am young (the average age at diagnosis is 72) and healthy (I mean, other than the cancer!), which will (hopefully) put me on the good side of the bell curve.

-----

A few days ago, Mikaela had a follow up appointment with her cardiologist and we learned that the last of her premie issues has resolved. Resolved. Over. All those nightmarish months when we prepared for the worst, not sure if the girls would survive, and if they did what sort of lives they might have. Now, they are simply two happy, healthy, and dare I say adorable little two year olds.

No one knows what the future holds.

I hesitated quite a bit before posting this, knowing that it is a lot if information to digest. But I believe it is best to face the truth, and step boldly forward.

My next scan is on Friday, September 27. We will get the results on October 1, and if things are still working I will begin my next round of chemo that day. Thank you for all the well wishes, prayers, good vibes, FOOD, and endless love and support. I am so fortunate to have so many wonderful people in my life. You are all superheroes.

It's okay, even superheroes get tired sometimes!

Assorted thoughts on twins and more

As the shock of raising two babies at once (with an almost 3 year old in the mix, too) is wearing off, I am starting to see a lot of wonderful things about having twins.

Autumn

It seems no matter how we place the girls in their crib, the wriggle wriggle wriggle until their heads are touching and they are holding hands.

Autumn, Mikaela

It reminds me of their first night in this world. See, in the womb they had been positioned head to head, with the top of Mikaela's head touching the side of Autumn's. Their first night in their incubators, Mikaela, tiny as she was, managed to scoot all the way up to the top while Autumn wriggled all the way to the side. I think they were trying to find each other.

Mikaela

I walked into their room the other day to find them chattering to each other in their crib. So adorable. And they both giggle in their sleep! What's up with that? Z did it too. Quite wonderful.

Mikaela

I am getting excited about going back to school in the fall and starting work on some creative projects coming up. I'm not sure how it is going to feel juggling work and the newly-enlarged family, and I get little pangs of sadness to think that I might miss out of those great moments that the kids have. I was complaining to Jason that it is hard having both a family and work that I love. Then I paused and we looked at each other. He said, "Isn't that exactly what we have been trying to create?" Oh, yeah. I guess I am actually incredibly lucky. Nice to have it back in perspective.

The first time Z saw one of his sisters spit up, he recoiled in disgust (which is particularly funny to those of you who recall how much he used to spit up). Then just the other day, his sister spat up and he casually got a kleenex and cleaned it up. Jealousy issues and all, he is still a pretty great kid.

So he does alright most of the time, but when the girls get particularly needy, Z kinda falls apart. It reminds me of this idea I had years ago of doing a variety show lit entirely by the audience. Upon entry to the theater, each audience member would receive a miner-style helmet with a light. There would be several things happening on the stage at once, so whatever grabbed the attention would be lit, and everything else would go dark. I realized it would probably just dissolve into a bunch of attention-getting tricks. This is pretty much what happens to Z. "Oh, the girls are crying? Well . . . look at me! I just dumped out all my legos! Still nursing? Um . . . then I will dump a water bottle on the couch. Did you see that, Mommy? Look at me! Pay attention to me! Mommy! Mommymommymommymommymommy!!!" Totally transparent, totally understandable, and totally exhausting.

The world's cutest triceratops

The jealousy issues we are experiencing are basically the typical new baby problems that every older sibling has, only more so because, well, two babies. Plus we cannot go anywhere without attracting at least a few gawkers. While I am the first person to agree that the girls are gorgeous, these onlookers fail to notice that they have an equally wonderful older brother who stands silently by while people "ooh" and "aah" over his little sisters.

So if you are one of those people who likes to stop someone pushing a twin stroller and comment about the babies, please take a moment to notice if there is an older sibling you are overlooking, and send a little love that way.

Zander sharing his buddies with Autumn

Update

The girls had their monthly weight check, and their weights are now 10 lbs 10 oz for Autumn, and 9 lbs even for Mikaela. They are progressing right along their (premie) growth curves, so all looks well. Nice work, girls! I guess my high fat diet is paying off. Bring on the ice cream!

I am reading Entwined Lives: Twins and What They Tell Us About Human Behavior, and I just learned that if the girls grow up and have babies, these children will be genetic half-siblings because, at the genetic level, Autumn and Mikaela are the same person. HOW BIZARRE IS THAT?!?








I gave Zander the task of rinsing out an empty dish soap bottle. An hour later, the bottle was clean, and he and the kitchen were soaked. How great to be two!

The results are in....

In what is both the strangest and cooled birth gift I've ever received, my sister bought a DNA test for the girls so we can determine what sort of twins they are.

(drumroll please)

They are identical! I had a feeling they were, though the size difference makes them fairly easy to tell apart. Old pictures of Autumn look like Mikaela, so I guess Autumn gives us a sneak peak of how Mikaela will look in a few weeks. I wonder if their sizes will even out as they grow up.

40 Weeks!

May 1 is the girls' official due date, and they are almost 8 weeks old. Weird. They are now 6 lb 8 oz and 7 lb 9 oz. I can't even imagine what I would have felt like had I carried them to this size!

Things around here have been pretty good. We are busy with all the feedings, changings, and burpings, but it is going surprisingly smoothly. My wonderful mother was here for the first two weeks that the girls were home, which was enormously helpful since they were still struggling to eat during that period. It was rather stressful because we would have to wake them up and convince/force them to eat whether they wanted to or not, and then we would anxiously wait for the next weigh in to make sure they had increased the expected amounts. Since then, they have become more like normal newborn babies who wake up and cry when they are hungry. It may sound strange that I am so happy that they cry, but it is quite a relief to have the girls actually communicating this need for food.

Zander is proving to be a total superstar of a big brother. He takes his responsibilities quite seriously and assures me that he is being "very gently" whenever he pats them. He gathers up their car seat blankets and diaper bag for me while I get the girls ready for an outing, and when they fuss in their crib he goes in and checks on them. One day when he was looking at them, he shook his head, sighed and remarked, "I have so many babies!"

It is a bit of a challenge balancing the needs of a 2-1/2 year old and two babies, and we are really trying to ensure that Zander still gets one-on-one time so that he doesn't feel resentful of the girls. I think the hardest part about having twins is also having a preschooler, but if I hadn't already been through the baby-years once, I would probably think it is really hard having twins. So it all works out. 

So what do you think, identical or fraternal? We can't decide (and have not done any testing yet to determine for sure).

A Trial Run

While Mikaela has been enjoying settling in at home, Autumn decided to take matters into her own hands, and removed her feeding tube.

 Oh, my! What have I done!

Was this a good idea? What's going to happen now?

To my pleasant surprise, the doctors have decided to try something a little bit different. Rather than following the very strict feeding schedule (she must take x number of mls every three hours, and anything she doesn't take by mouth goes in her feeding tube), they have decided to follow her lead. If she is a little bit more or less hungry at a feeding they will give her what she wants, if she needs to wait 3.5 hours between one of the feedings, that's okay. 

What a great idea!

They are going to do this trial run for a few days and monitor her weight. If she stops gaining weight, or starts to lose weight, then it is back to the schedule and the feeding tube. So, Autumn, we will listen to you as long as you hold up your end of the bargain and keep gaining weight!

Notice anything missing?

I'm home with a cold today, so Jason is spending the day with the girls. He sent me a text with this picture. Do you see what I see (or, what I don't see)?

Mikaela doesn't have her feeding tube any more! Since yesterday morning, she has taken every feed by mouth. I guess the nurses are getting confident that she will keep doing this. If she keeps it up for several days in a row, she can come home!!!! Come on, Mikaela, you can do it! And Autumn, you keep trying and you will do it soon, too!

I can't stop staring at the picture. I've never seen her face without a tube before!

A Muddle of Ups and Downs

Yesterday morning I got a call from the NICU telling me that they were taking Mikaela for an echocardiogram because has a heart murmur and was breathing fast. (Ugh, what a crummy phone call.)

The test went fine, and they said that the murmur was nothing to be too concerned about it. I guess they are common in premies and that they typically resolve themselves. They don't know why she was breathing funny, but she is back to normal now. (Sigh of relief.)

Autumn would not take her eyes of Mikaela all through the test. I wonder if there is something to that special connection that twins are supposed to have. It was really touching to see her concern. (So sweet!)

Mikaela was retested for MRSA and it came back negative. (YAY!) However, they won't lift the precautions until she has three negative tests, so she still cannot have any contact with her sister, and if I have any skin contact with her, I cannot touch Autumn again until I go home and shower. (So frustrating!)

I have successfully breast fed each girl! They both know how to latch and drink well, and it is so great to see that their newborn instincts are intact. (Way to go, girls!) I really want to try feeding them together, but because of the MRSA precautions I will have to wait until I get them home to do this. (Grr.)

Both girls are gaining wait really well. Mikaela is 4 lb 11 oz, and Autumn is a whopping 5 lb 11 oz. (Hooray!) Now they just need to get more consistent with their feedings. Sometimes they eat really well, and other times they don't seem to have the stamina to eat much, and we end up tube feeding them. This is our last big obstacle we have to overcome before they can come home. I really look forward to having my whole family together! (Trying to remain patient....)

We bought a minivan! We now have a vehicle big enough to fit all three of our kids. A huge thank you to Jay Slingerland for getting us a great deal and helping us have such a positive experience. Anyone in the Owosso area should check out his dealership. (Yay for good people!)

I guess there is more good news than bad, which is good. (Yay!)

...and one step back...

I have been repeatedly told that the NICU experience is an intricate dance of "two steps forward, one step back." After what has been a steady march forward for the past week, I guess we were due for a hiccup.

During a routine nasal swab, Mikaela tested positive for MRSA. The doctors reassured me that she does not have a MRSA infection, merely the presence of MRSA (it is a colonization, not an infection). It could be nothing. Since she does not have an IV or any open wounds, the chance of it entering her bloodstream is very small. They must realize, however, that you cannot tell a mom that her tiny premature baby is testing positive for something like this without making her worry.

What does this mean? She will be bathed with a special soap for 5 days and given an ointment in her nose to kill the colony. It also means that she cannot have any contact with her sister, and I cannot go back and forth between the two. Anyone who comes in contact with her must wear a gown and gloves, then wash thoroughly. The chair and table next to her incubator are now marked "dirty - MRSA." What a crappy 2-week birthday present.

I deeply hope that this will be an annoying inconvenience and nothing else.

Update on the Baby Girls

When I arrived in the NICU today, I was shocked to discover that they had opened the lids to both girls' incubators. Wow, what a great step forward! We'll see how well they tolerate it and if they are able to maintain their own body heat.

They have each started taking some milk by mouth - another important step in their ability to leave the NICU. Autumn, perhaps in a moment of over confidence, pulled out her feeding tube. I reminded her that she needed to keep that in until she had mastered eating. I'm not sure that she understood me.

They are now wearing regular clothes and swaddling in blankets like regular old babies. It is so nice to see them like that! Autumn is now 4 lbs 9 oz and Mikaela is 3 lb 13 oz. Keep growing strong, girls!

Autumn

Mikaela

Snuggling together

Such tiny fingers!

I've been splitting my days, and spending the mornings with Zander then the afternoon/early evening in the NICU with the girls.

I was playing outside with Zander the other day when he picked up a rock and discovered a worm underneath it. He watched it crawling and commented on how it was wiggling slowly. This was the conversation I had with my very literal son:

Me: Can you wiggle like a worm?
Z: Um... I think so...
Me: (waiting) Well, can you show me?
Z: Uh... okay... (hesitating) Here I go ....

He then lay face down in the mud next to the worm and started wiggling. Oh man, I have to be careful how I phrase things with him!

The girls are here!

Late Tuesday night (March 8), after a dramatic emergency c-section (let's just say I am very grateful I was in the hospital), our beautiful little girls came into the world kicking and screaming at 32 weeks 2 days. 

Mikaela Jaise was born at 11:43 pm 

3 lb 6 oz, 16.5 inches

Autumn Willow was born at 11:44 pm

4 lb 5 oz, 17 inches 

Mikaela has been breathing room air since the beginning, and Autumn has been getting some help from the CPAP machine. 


These are the cute decorations that the NICU nurses made for the girls.

Welcome, baby girls! Keep growing strong!