Monday, December 30, 2013

Week 19: The Grinch looks west

This week, we went to New York to celebrate Lemon's first Christmas.  Not being raised in a Christmas-observing household, I am quite a Grinch myself, but fortunately for Lemon, Papa Bear, Grandma Carol, Grandpa Dudley, and Great Grandma Virginia really get into the holiday spirit.

Santa (ie Grandma Carol and Grandpa Dudley) got Lemon all kinds of nice toys.  He seemed very interested in all of them, particularly one that has flashing lights and plays music.  We figured out right away that his little brain can only handle one song per session though--if you press the button on the toy again to start a second song, he sort of short-circuits and cries.

We also had a nice time visiting with the ever-fashionable Uncle Jared (and Aunt Lauren), as well as Nona and Opa who joined us for the occasion, providing us with our first opportunity for a four-grandparent photo.

On Boxing Day, we hopped on the train back to Boston to be home in time for another big adventure--a drive up to New Hampshire to close on our new house in Wisconsin.  You may ask why we had to drive to New Hampshire to close on our house, and the answer is that we have absolutely no idea.  Our mortgage company told us to do it, and the path of least resistance was to do what they said.  So, we drove to a random office park in southern NH, went to a company whose business seems to be renting furnished conference rooms by the hour, went into a conference room, signed a ton of papers, and became home owners for the first time.  After a delicious celebratory lunch with our dear friend Eric P. at the Purple Finch Cafe, we headed home to face the reality of moving.

We scrambled around frantically for the next couple of days, getting together with a few friends for the last time, taking care of Lemon, and getting our house organized for the packing crew.  The packers came today and in a matter of 4.5 hours reduced our home of 4.5 years to 80 cardboard boxes.  The only noteworthy aspect of today's activities was the packer's thoroughness--we told them to pack everything in Lemon's room, not thinking it necessary to indicate that they should not pack the trash bag containing dirty diapers.  Well, let's just say the packers took us at our word, and those diapers will be on the truck to Wisconsin tomorrow.  The movers must have thought we were crazy first-time parents, to be saving these precious relics of our baby's first months...

We watched the soaking wet Patriots/Bills game on TV as we were making our final preparations, and I explained to Lemon that no matter how long we live in Wisconsin, as a native of the wonderful state of Massachusetts, he will always be a Patriots fan.  Luckily he will have his Uncle Jared to set a good example for him in this regard--and his first set of Patriots clothing in just the right size to wear during this year's playoffs.

I can't quite believe that next week's post will be written in Wisconsin, but that is the reality; we have just 4 full days left in Massachusetts.  If I thought any of the weeks leading up to this one was an adventure, I have a feeling I haven't seen anything yet.  We've done travel with a baby several times now.  Someone said on a travel blog that I read that the first time she traveled with her baby, it felt like moving.  I now know exactly how she felt--so my question is, if traveling with a baby feels like moving, what does moving with a baby feel like?  I guess at this time next week, I'll know!

Monday, December 23, 2013

Week 18: Stem cells to the rescue!

This week, Papa Bear and I met with Dr. Jay Rajagopal (a colleague of mine) to get a personal update on all the great science that is going on in CF research.  Dr. Rajagopal is a pulmonologist and a stem cell scientist, and he told us about the advances made in his lab and others on the use of stem cells to study CF. I've written up a layman's version of our conversation here, illustrated with some key pictures and videos from this week to provide a little break from all the science.  We were so excited to hear about all the great things that are coming in CF research, and feel so lucky that Lemon was born now, when such great research tools are coming on line.

A basic problem in CF research is that some of the most severe pathology of the disease occurs in the lung, and the lung tends to be located inside a patient, where it is difficult to study.  So, although it is possible to get a small number of lung cells to study by doing a biopsy on a patient, these small numbers of cells just aren't enough for major research efforts.  Research using cell grown in a petri dish is a critical component of the process to discover new drugs, and the process requires absolutely huge numbers of cells, far more than could ever possibly be obtained from patients.  What to do?  Up until now, scientists have had to use imperfect methods like artificially turning on the cystic fibrosis gene in some type of cell that is easy to grow in a dish, but isn't a lung cell.  This is certainly better than nothing at all, but is far from a perfect system for studying lung disease.  Especially in a disease as complicated as CF, the more closely the cells in the petri dish resemble the actual cells that are causing trouble in the patient, the better the medicines that are discovered using them are likely to be.

Enter stem cell technology.  The most simple definition of a stem cell is a type of cell that can either divide and make two identical new cells, or divide and keep one cell as the stem cell and produce another cell (a so-called daughter cell) of a different type.  The first kind of stem cell that can help with CF research is called the basal cell, which is actually a type of stem cell that lives in the lung.  The basal cell can divide to make more cells just like it, or it can produce the two key types of cells that line the lung.  At least, it can certainly do those two things when living in its natural environment (ie, the lung) but until recently it has not been possible to grow basal cells very well in a petri dish--a lot of cells are very particular about where they will grow, and without the right environment they will stop growing and die.  Luckily, research in Dr. Rajagopal's lab has identified some tricks that allow basal cells to grow happily in petri dishes and produce lots and lots of daughter cells.  In other words, it may soon be possible to take a small biopsy from a patient's lung, and grow that patient's very own basal cells in a dish.  If provided with the right cues, the basal cells will start making the other two key lung cell types, too.  This provides one way to make very large amounts of lung tissue that is both genetically identical to the patient, and pretty similar in structure to the lining of the lung--that is, an ideal system to use to study CF in the lab.

The second type of stem cell that could potentially revolutionize CF research is called an "induced pluripotent stem cell" or iPS cell for short.  These cells are very similar to embryonic stem cells, but are actually artificial stem cells that can be made in the lab from a skin biopsy from a patient.  Like embryonic stem cells, iPS cells have the ability to form any cell type in the body--at least theoretically.  The main trick with iPS cells is that since they have the potential to form all possible cell types, it is often difficult to get them to focus on forming the cell types that are of particular interest for a particular research problem--in this case, lung cells.  Again, Dr. Rajagopal's lab has been leading the way to find the technology to convince the iPS cells to make lung cells, and has made incredible progress--he guesses that in the next year or two, his lab should be able make lung cells from iPS cells routinely and in large numbers.  Because iPS cells can easily be made from any patient, this technology provides a second way to make lots and lots of a patient's own lung cells to study.

Right now it's a little tough to say which technology (the basal cells or the iPS cells) will ultimately be the best way for finding CF drugs, but either approach is likely to be so much better than the current technology (technology, which, it should be noted, has already produced some amazing discoveries like Kalydeco).  We're all eager to see what a drug-discovery company like Vertex will be able to do once they actually have the right types of cells, derived from actual patients, to work with.  Papa Bear and I were so grateful to Dr. Rajagopal for taking the time to talk to us, and for giving us so much hope as parents that the amazing progress in his lab will help find cures for Lemon and all the other patients out there with CF.  In the mean time, Dr. Rajagopal asked me to help him by educating people in the CF community about the importance of stem cells, and making sure that everyone I know is out there advocating for stem cell research.  So, consider this blog post my first small effort in response to his challenge, and stay tuned... 

Monday, December 16, 2013

Week 17: Countdown

Our move to Wisconsin is getting closer and closer.  This week, we started saying goodbye to people that we won't see again for a long time.  This is the hardest part of the move for me, and luckily Lemon came through with some cute new developments to take my mind off of our impending separation from our friends and family.

The biggest new thing Lemon is doing is really, repeatedly, reaching for things with his hands, batting them, and occasionally trying to bring them to his mouth.  It's pretty fun to watch, even though I know that it heralds an era where nothing in our house will be safe from those little grasping fingers.  

As a sneak preview of our future, we had some dear friends over for a farewell brunch who have two young sons.  This gave Papa Bear a chance to teach a paper airplane making lesson, and win the admiration of his young student.  I know Papa Bear can't wait until Lemon is old enough to make paper airplanes, too!

Our friends both seemed to enjoy the trip down memory lane provided by our little guy.  I can't really believe that he might be walking the next time they see him.

We had a wonderful fondue dinner with some of our friends that we've known since we were in college.  It's hard to believe that we soon will be living so far from these people who have been so important to us for the past 18 years, and that they won't be a regular part of Lemon's life as he grows up.  Boston has been really good to us.  

This coming week is my last full week on the job, so I submitted my letter of resignation, which had a scary sense of finality to it, and had my good-bye lunch (delicious Otto's pizza).  The lunch went off as planned in spite of the bomb scare on campus that had all kinds of different police agencies all over campus.  As usual, Lemon was the star of the show, and my presence was purely in a supporting role.

The cats seem to have noticed that something is afoot, and one of them is trying to indicate that he would rather not use a regular cat carrier on the big day.  Little does he know what's actually in store...

Monday, December 9, 2013

Week 16: Superman

We now have about two weeks of vaguely normal life left in Boston before we move, so our days are growing full of doing things for the last time.  For Lemon, this included his very last visit to the CF clinic at Children's.  This visit was mostly just another weigh-in, and Lemon tipped the scales at around 13lb.  He's still only in the 25th percentile but he's staying right on his growth curve so his doctors are really pleased with his progress.  His bloodwork revealed that he is a bit low on vitamin D, in spite of the daily dose of aquADEKs (the really nasty orange vitamins), so we have to supplement that with a 1mL dose of regular infant vitamin D drops.  Fortunately, those taste much better and don't stain anything, so it's not really a big deal.

We will definitely miss Children's.  They got us off to a great start, and we can only hope that the staff at the clinic in Wisconsin are as warm, caring, and competent as the people we worked with here.  It seems like the staff here will genuinely miss Lemon, and one of his doctors snapped a couple of quick pictures to remember him by.  We made sure that we had a perscription for enough enzymes to cover us until we get to Wisconsin (Lemon is up to 3 pills per feeding), got a few last bits of advice on chest PT, and bid a fond farewell to Children's. 

In addition to the "lasts" this week, we also had an absolutely wonderful "first."  By coincidence, two of my wonderful first cousins also had baby boys this summer, one in June and one just two days after Lemon himself was born.  The three of us had formed a mom's group that met monthly using Google Hangouts while we were pregnant, and continued after the babies were born.  This weekend, all three of us first cousins and the three little second cousins got together in person for the first time.  We got them dressed up in matching outfits and had a fun photo-shoot at my uncle's house. 

My grandmother was there, so we got to capture her surrounded by her three newest great-grandchildren for the first time. 
We also managed a shot of the four generations of my family (Great Grandma Frieda, Opa, me, and Lemon).

My grandmother noted that it didn't seem right that after a few short hours together in Boston, the three of us first cousins and our boys were all dispersing to our separate homes--in Rio de Janeiro, Washington, D.C., and soon to be Madison, WI.  I think we all wish that it were somehow possible to live closer together, but our lives have pulled us in different directions.  At least with the marvels of modern technology, it is easier to stay in touch, and we already began making plans for our next reunion. 

In other firsts and lasts, I attended my last meeting with a book group that I've belonged to for something like six or seven years.  In addition to it being my last meeting with this book group, it was the first time that I hadn't read the book--there's just too much going on right now!  That, and I have my last assignment for my very last class at the Harvard Extension School due a week from tonight.  I'd really better get started on that...

Monday, December 2, 2013

Week 15: Thanksgiving

This week marked another milestone in Lemon's life--his first Thanksgiving.  Our family Thanksgiving is a big, raucous affair with 35 or so in attendance, many of whom were meeting Lemon for the first time.  To make sure Lemon was ready for prime time, I gave him a little coaching before we got started.

Judging by the reactions of Aunt Lauren and Grand-Aunt Nancy, the coaching paid off!

One of the highlights of this Thanksgiving was introducing Lemon to his second cousin, Alex, who is just two months older than he is.   Unfortunately, with two babies in the room, it seems like no one had enough free hands to take a picture.  Luckily for us, Alex is in town for another week before heading home to Brazil, so we should get another chance at getting the two of them in a picture together.

Another highlight of Thanksgiving weekend for the past few years has been the observance of FAT (Friday After Thanksgiving) where Papa Bear and I host a big vegetarian feast at our house.  I very much wanted to do it this year, since it is our last year in Massachusetts, but doing it with Lemon in the house made it infinitely more complicated than it has been in years past.  I made myself a little cheat-sheet telling me which tasks to do for what course on what day. 
Somehow, we managed to complete all the prep on time.

With a little help from Lemon, who did not want to be left out of the meal preparation activities...

...or the meal consuming activities...

...and especially not dessert-consuming activities.  Next year he may even get to taste the pumpkin flan!


A major highlight of FAT this year was Lemon's first ukelele lesson from Grand-Uncle Joel.  Lemon continues to be totally fascinated by music, and by his musician uncle in particular.
When Jared and I were growing up, we were always convinced that Uncle Joel was a famous rock star, since no matter where we went in his home state of Maine, we always ran into people who recognized him and came running up to greet him.  I think Lemon has come away with the same conclusion, and is eager for his hands to get big enough for his first real uke lesson.

Both Papa Bear and I feel as though the passing of Thanksgiving marks the end of our time as real residents of the Boston area.  Now, all our energy is really focused on getting everything in place for our new lives in Wisconsin.  It is a bittersweet feeling.  We have so much to look forward to there, but so many wonderful friends and family members that we are leaving behind on the east coast.  It's hard to acknowledge that we don't really know where we will be for Thanksgiving next year, or who will come to FAT, or if we will even have FAT at all.  But, as someone once told me, with those that are dear to you, it's never "goodbye," it's just "see you later," even if you don't really know yet when later will be.