Week 23: The golden shovel

It feels as though I did very little this week other than shovel snow, but if I push myself I can recall a few other scattered moments...

Last week, we'd heard our insurance had declined to cover Lemon's last two doses of Synagis, as we had sort of expected.  We'd appealed the decision, though, and were told that if we wanted to we could participate in the appeals board's discussion via conference call.  Our understanding was that we could listen to the board's conversation, and then when called upon we could add our two cents.  Papa Bear and I did some reading the night before the call to refresh our memories on the current research on Synagis and CF so that we would be ready. 

My phone rang at the expected time, and we were ready to listen to what the board had to say, and then speak our piece.  As you can imagine, we were very surprised when the woman organizing the call just said "Hello, do you have any comments for the appeals board as they consider their decision?"  Even though we were a little surprised, I think we managed to spit out some vaguely coherent sentences about continuity of care, and that the lack of clinical data on Synagis and CF is due to CF being a rare disease, not due to a lack of efficacy of Synagis in CF patients and so forth.  As soon as we were done, the woman thanked us and hung up.  We have no idea who (if anyone!) was even listening to what we had to say, or what they thought of our comments. 

The good news is that we got a call back a few days later saying that we were approved for the two additional doses that Lemon was scheduled to get this year.  Phew!  The insurance company said there's no guarantee that they'll approve Lemon for next year, but I just said what I honestly feel--we're taking one winter at a time.  I also found out that unlike in Boston, where Synagis was given in a quick visit at the pediatrician's office, here it's a 90-minute visit to the pulmonology department at the hospital.  I'll save the description of why that is for later this week, when I'll be trapped in an exam room with a bored baby for no reason other than general inefficiency...

On Saturday, we went on a little field trip downtown to the indoor winter farmer's market, which is extremely lively.  Even though it's the middle of winter, the market is still jam-packed with extremely tempting stuff, and I had to be strict with myself to only spend the amount of cash that I'd allocated.







After the farmer's market, we went to the public library to register for library cards.  It turns out that the main library has its own chocolate shop inside--what could be better?  If you're there, try the Parisian hot chocolate--it's very small but packs a wallop.
 

After finishing my interviewing process, I hired someone to watch Lemon when I go back to work starting next week.  I'm very confident in her abilities, and she actually started today so that we have a week where she and I are both here to help smooth out any kinks.  She's very calm and experienced so I have every reason to think that things will be fine, but of course I'm still nervous.  I have to keep reminding myself that I had no special training that enabled me to open enzyme pills or look at baby poop before Lemon was born, so there's no reason that she can't pick it up quickly.  I had to leave the house for a few minutes right after she arrived to drive Papa Bear to work, and Lemon was asleep so I was telling her what to do when he woke up, and at some point she said, "Don't worry.  It'll be fine.  You'll be back in 15 minutes."  And it was fine.  So later in the morning I went to Home Depot.  Don't tell me I don't know how to have a good time.

In other news, the cats have completely adapted to their new home--I think they've totally forgotten that they ever lived anywhere else.  I can hardly say the same for myself, but at least this place is starting to feel vaguely familiar, and a little bit less like some weird parallel universe.  It's certainly not home, but it's getting there.

Week 22: 5 months young

Thankfully, this week was a bit less exciting than last week, because honestly I think all of us have had enough excitement for a while and are eager to settle down into something resembling a routine in our new hometown.  To that end, I interviewed a bunch of candidates to watch Lemon when I go back to work starting February 3rd, and identified a few that were promising.  No one seemed particularly fazed by the idea of taking care of a baby with CF, and honestly I don't know whether to tell them that it will be easy or that it will be hard, since only time will tell us that.  And, most likely, it will be a mix of both.  This coming week, I have second interviews scheduled with two candidates to see how they do during a little more prolonged interaction with Lemon, hopefully including both a feeding and a nap, and then I'll pick a winner.  The new nanny and I will have a week together before I start work to hopefully make the transition as smooth as possible.

I've also continued to practice driving--I think I'm now approaching 100 miles in our new car (probably representing 50% of the total miles I've ever driven in my life).  This past week, my wanderings included a field trip to the neighboring town of Verona, where I went to the Sow's Ear, a combination coffee shop and yarn store.  It's pretty much as heavenly as it sounds.  I got some nice yarn for a special project, because I have so much free time for knitting right now.  Well, not exactly, but with the Super Bowl and the Olympics coming up, there is certainly an enhanced possibility of doing some knitting sometime soon.

Speaking of the Super Bowl, sadly Lemon's team did not come through for him on his 5 month birthday.  He nonetheless enjoyed his special outfit (courtesy of Uncle Jared) and will continue to use it to display Patriots pride in this Packer-heavy town.

As Lemon has rolled through the past few weeks, he's continued to make lots  of developmental strides.  In the category of "they grow up so fast," he's beginning to outgrow his floor gym, where he has spent so many happy hours of his little life.  We got a Jumparoo for him before we left Boston, and got that set up for him shortly after arriving in Wisconsin.  He just loves it, even though is legs are still just a smidge too short to hit the floor, even with the seat at the lowest setting.  Nonetheless, he prefers it to the gym now, since he wants to be upright like a real little person, not flat on his back like a baby!

 He's also begun displaying a lot of interest in solid food, so we asked at his CF clinic visit what the nutritionists recommended as first foods.  They recommended either avocado or "baby meats," so we went with avocado, which Lemon seems to like, at least on a trial basis.  We decided not to rock the boat by asking about the feasibility of raising a vegetarian CF baby until the next visit.  Since he'll be getting most of his nutrition from milk for the next few months anyhow, it doesn't really matter what foods we start him with--we just wonder whether we'll be able to get away without feeding him meat once he's bigger.

Lemon has also gotten much more interested in reaching out and grabbing things with his hands, particularly my face and hair.  He is also interested in anything that I bring towards his face, including the dropper from his bottle of vitamins, which can have interesting results.  

For those of you who are interested in a little extra reading, I highly recommend an article by Jerome Groopman in this week's New Yorker, about caring for children with chronic illnesses (link to the article here, let me know if you want to read it and don't have a subscription and I'll send you the PDF).  It discusses how to approach a new problem in medicine: since children with chronic illnesses are living longer and longer (which is wonderful news!), what is the best way to coordinate the myriad specialists that are involved in their care?  How should medical professionals help parents to figure out the best course of action for their child, in the face of so many different choices and no obvious right answers?  Of course, the program described in the article was developed at Boston Children's Hospital, where we used to go, so it made me doubly sad that we had to leave the wonderful clinic there.  Hopefully we can help the clinic in Madison establish some of these same practices, so that as Lemon gets older, he can benefit from the new ideas described in the article.  For now, we're just bracing for this week's battle--as we had expected, our new insurance company declined to cover Lemon's remaining two Synegis shots.  We have an appeal phone call on Wednesday morning where hopefully we'll be able to bring them around to our side--fingers crossed!  

 

Week 21: The same but different

We had our first visit at the Madison CF clinic this week.  In many ways, it's the same as the as the Boston clinic, but of course in some ways, it's different.  The first difference is that I drove us there in our new car, totally without incident I might add.  As I mentioned in a previous post, one big difference between the Boston and Madison clinics is that the Madison clinic actually has a waiting room, since they have many fewer CF patients than Boston and seem to be a bit less paranoid about patient-to-patient transmission of infections.  They do, however, request that all patients wear masks while waiting for their appointments.  Unfortunately, even the smallest masks are a bit too big for Lemon.

Lemon's appointment began in the patient intake room, where they measured his height and weight.  He continues to cruise along at the 25th percentile for weight, so all seems well there.  The awkward thing about the patient intake room, especially in winter, is that by the time Papa Bear and I had removed our outerwear and stripped Lemon down completely to be weighed, there were about 500 pieces of loose clothing scattered around the room, which we had to then gather up to move to the exam room.

One notable difference between the Madison exam rooms and the Boston ones is the decor.

Other than that, the appointment ran very much like one at the Boston clinic--at least we knew to expect to be in the room for two hours as a parade of new people came through.  We got visited by the doctor, the nurse, the nutritionists, the coordinator for the clinical study, the social worker, and on and on.  By the end of the appointment, Lemon was completely exhausted.  He had just managed to doze off in my arms when the nurse came back in and woke him up to do a throat culture--not exactly the most pleasant way to wake up.  Fortunately, that was the last thing we had to do so after that we bundled him up and put him in the car, where he promptly passed out and was blissfully unaware of being driven home by a novice at rush hour with "wintery mix" falling from the sky.

Another major difference between the Boston clinic and Madison is the approach to enzyme dosing.  Madison seems to pride itself on using the highest doses of enzymes in the country.  Honestly, I think it is a bit strange to pride yourself on being an outlier.  Unless there is very compelling evidence that it is good to give very high enzyme doses, is it really good to be the clinic giving the highest ones?  That is, if the highest doses are really the right thing, why aren't other clinics on the bandwagon already?  I do feel that our doctor in Boston was a bit too conservative with enzyme dosing, and Lemon would outgrow his prescribed dose in between visits.  But here I feel like I'm actually pushing back a little bit against the very high dosing.  While I do want the dose to be high enough that he won't outgrow it between appointments, I just don't see the benefit to giving him way more than he actually needs to digest his food and grow well.

The other interesting enzyme note is that we are going to have to switch brands of enzyme since our new insurance doesn't cover the old brand (Zenpep) unless you've tried the new brand (Creon) and it doesn't work for some reason.  I wish Zenpep were covered since we know it works well for us, but we found out today that we have to at least try Creon.  If it works for us, I suppose that's great, since it will mean a low co-pay and no need for repeated battles with the insurance company, but if it doesn't work, I will be really annoyed that we had to take Lemon off something that was working well just to prove a point with the insurance company.

Other than the ups and downs of our first visit to the new clinic, we've just been continuing to adapt to life in Madison.  We went to a grocery store about a mile from our house that had an extremely impressive produce selection (note the price on this unusual fruit in the lower left).

I also went out for my first run in our new neighborhood to try and develop some new running routes for myself.  It turns out that there is actually a hill in our neighborhood, which is encouraging.  In this view from the hilltop you can see the shopping complex that is about a mile from our new house, in the opposite direction from the grocery store.

It occurs to me that I don't have any pictures of the new house to post yet--maybe by next week it will be less of a disaster and I won't be embarrassed to post pictures of it on the internet!

Week 20: Into the polar vortex

What a week this has been.  On Monday, packers came to our apartment and packed up our home of the last 4.5 years.  It's the first place Papa Bear and I lived together, the only place our cats have ever lived (aside from their brief stint with the crazy cat rescue lady, but that's a separate story) and the place where Lemon first came home from the hospital when he was born.  On Tuesday, the movers came and loaded all of our worldly possessions onto a giant truck bound for Wisconsin.

After that, we decamped to Nona and Opa's house for a few days until our flight to Madison.  Throughout all of this, we were saying our final goodbyes to so many wonderful friends.  Thursday there was a huge snow storm, which added a surreal sense to the whole experience, not to mention making the logistics of getting around on our last few days in Boston a bit more difficult.  Opa had to drive us through the falling snow for one last visit to Lemon's pediatrician for his January Synegis shot--giving us about a month buffer to get stuff set up for him in our new home before the February dose comes due.

On Saturday morning, Opa drove us back to our old apartment one last time to collect the cats and a few other things that we'd left there.  The cats were so thoroughly traumatized by being left alone in an empty apartment that catching them and putting them in their carriers was surprisingly easy--it's funny how both for them and for me, as soon as the stuff and the people were out of the apartment, it immediately ceased to be "home" in any real sense.  It just felt like an empty apartment.  So, with everyone and everything packed up, it was finally time to fly.

This is where the real hero of this week's post, my friend and colleague Dave, makes his entrance.  There are many wonderful things about Dave, but three of them are that he is unbelievably, incredibly generous, that he owns a jet, and that he has a nice camera and enjoys using it.  Combine these things and you have the heart of this week's post--the illustrated story of our flight to Madison on Dave's plane.  Dave's plane lives at the Hanscom airport west of Boston, so we drove out there and loaded all our cargo and pets onto the plane (note the snazzy DNA double helix on the body of the plane!).

Once everything was loaded up, we were towed out onto the tarmac where we fueled up and took off. 

Some of us were decidedly more impressed by the experience than others. 

After a very quick, smooth flight, we touched down in Madison, our new home.  It is really impossible for us ever to thank Dave enough for flying us out to Madison--managing all our bags, two cats, and the baby on a commercial flight would have been an absolute nightmare, and instead of that we had the easiest, plushest flight experience possible.  Hopefully some day and in some small way we'll be able to do something equally memorable for Dave.

Once we were on the ground, we got everything off the plane and into a rental car, and Dave drove over to our new house.  There, we got the cats set up in the basement and left them to their own devices to recover from the trauma of the last few days.

Our stuff doesn't get here until later in the week, so we're camped out at a hotel downtown in the mean time, with all the joys of sharing a hotel room with an infant.  Luckily for us, Nona and Aunt Donna drove out here in Nona's car to meet us, so we've had their help and company during this transition.

 To finish off the week, we bought our first car.  As those of you who know me can appreciate, this was a big step, since I haven't actually driven a car in about 4 years, and have driven a total of maybe 200 miles in my entire life.  The combination of the move to Madison and Lemon's arrival made it pretty much essential to have a car, though, so we'd made all the arrangements while in Boston and then went over to the dealership to pick it up.  Interestingly, the air temperature in Madison was around -18F when we headed out to get it, due to a weather pattern called a polar vortex--or, perhaps, due to hell freezing over, it's not clear.

All in all, it still feels like we're on some very weird trip, not that we've moved.  I don't know when that will really sink in--maybe when our stuff finally arrives?  Next week will be another big one, as we get our new house set up, Papa Bear has his first real full week of work, I begin my search for someone to watch Lemon when I go back to work, and we have Lemon's first appointment at the CF clinic here.  Then maybe I'll hibernate until April.

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!

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... 

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...