Cough, cough ... cough, cough ...

This virus turned out to be a rough one.  The order of its victims so far has been Kate, followed close behind by Mom, then Anna and Ethan, pretty much at the same time.  We are all still hoping that Matt was able to steer clear of the nastiness, or maybe he already built up some immunity.

Kate bounced back pretty quickly last week, but I kept going downhill throughout the week, feeling more and more tired at the end of each day, and waking up feeling less and less rested.  Thursday morning I gave up and Matt was in charge of the morning routine with the kids before returning home to work for the day.  (Translate ... Mom got a few hours of rest in the a.m., but still was responsible for the pick-up, drop-off, pick-up, drop-off, pick-up, drop-off circus of Thursday afternoons.)

By Friday, Ethan was showing signs and symptoms of having been cooped up too much during the week due to his mother's illness.  We decided to meet a friend at a trampoline park in the morning with the hope that Ethan would get some of that pent-up energy out before lunch, allowing me to rest in the afternoon.  That sort-of worked.

Saturday morning Anna woke up with the beginnings of her illness and Ethan was starting to have a nasty cough, too.  But Kate was a bundle of energy and I was tired of being cooped up in the house.  Matt ended up staying home with Anna and Ethan, while Kate and I spent the middle part of the day at the International Festival at the Overture Center in downtown Madison.

The two of us had a wonderful time, watching a group of "steppers", an African drumming and dance troupe, some traditional Lithuanian dancers, and a group of Spanish flamenco dancers, in addition to seeing and smelling plenty of foods and items from around the world.  As we were getting ready to leave, Kate let me know that if I ever wanted to go to an event like this again, she'd love to come with me, especially if I wasn't sick and we could stay as long as she wanted to ;)

Anna's cough and illness continued to drag her down, keeping her home from church on Sunday.  She rested, listened to books, and we played a few games.  She hates colds with coughs, but thoroughly understands the need to rest ... most of the time.

Sunday afternoon Kate was scheduled to go tubing with her 4H group.  We picked up one of her friends and joined the rest of the kids at the skiing/sledding hill for a couple of hours.  Had I been feeling better, I might have joined them on the tubes a little bit, but my own cough kept me inside most of the time.  The kids all had a blast, though :)

We had hoped that by giving Anna the time and space to rest, her body would be able to kick the virus quickly, but she had a fever on and off on Monday (when the girls didn't have school anyway).  More resting, more fluids, and even a nap helped perk her up.  Although she is home from school today (we still abide by the 24 hour fever-free rule here), she's feeling much, much better.  Hooray!

But, now Ethan has a fever.  His cough has also been deep and yucky, but his energy still seemed about normal prior to today.  However, he seemed more tired than usual after preK today so I checked his temperature after lunch today.  Sure enough, fever.  He's sleeping right now (really?!) so maybe his virus will follow the same course as Anna's and he will feel back to normal tomorrow.

At least these last two days of feverish kids have coincided with some beautiful spring-like weather.  After some cajoling on my part to get them outside initially, Kate and Ethan ended up spending almost 3 hours outside after lunch without hats or gloves!

I think the last 45 minutes outside was spent swinging and yelling ... these two both needed some weather like this!

Today, Anna has played merrily on the patio for close to 2 hours as well!

I've kept the patio door open these afternoons to try to clear out some of the winter germs that have been lingering in our home.  This is traditionally the time of year when we get hit with the worst of our winter illnesses.  Although I have hopes that this last round will be our final one, I have enough experience to realize that these dreams will probably not come true.  Oh, well.

On a completely unrelated note, we finished up the last of our frozen vegetables last week.  Sigh.  We still have plenty of canned goods, sweet potatoes, and pumpkins, but we will miss all of those green veggies we preserved last summer.  But ... today I ordered some more seeds for this year.  Bring on spring!

Valentine's Day and more

Valentine's Day passed in our family without too much ceremony.  We exchanged cards, ate some chocolate, and had pumpkin cake for dessert.  The older the kids get, the less I enjoy this Hallmark holiday.  Although all three of our children enjoy being able to give a special gift to each of their classmates, they end up coming home with a bunch of "stuff", much of which gets stuck in a shoebox somewhere in their closet until we finally clean things out.  One year Kate kept her pile of Valentine's (complete with candy) on top of her dresser for about 6 months before I finally made her throw some away.

I understand the sentiment behind the holiday, I just don't appreciate the commercialism that follows it.  At least Valentine's Day didn't bring along the same craziness as, say, Halloween does :)  Everyone here managed the excitement well and was still energized for the rest of the week.

As with much of the rest of the world, we have enjoyed watching some of the television coverage of the Olympics in the evenings.  The kids have had the chance to see some of the competitions involving the skeleton, bobsled, snowboarding, ski jumping, and alpine skiing.  Kate would really like to see figure skating, but we are learning that the coverage of those competitions is usually after her bedtime.  Maybe she'll be able to catch some one of these nights.

Normally, I'd let Kate stay up a little later just so she could watch some ice skating, but she's been fighting a cold, which she also gave to me.  This seems to be a fast moving one, but has hit us a little more "system wide" than others we had earlier in the winter.  Still, we are thankful that there have been no fevers and that we seem to be recovering relatively quickly.

Now that the kids are a little older and are able to handle more on any given day, I'm trying to give us all opportunities on the weekends to get out of the house, if only for a couple of hours.  Saturday we decided to do a dual outing, with the girls attending the annual circus while the boys entertained themselves at the model train show (which happened to be in the same general location).  I think it all worked out okay, with everyone enjoying their respective events.  Anna said she liked the animals best; Kate like the aerial performers; Ethan was disappointed that he didn't get to buy a train (even though he knew in advance he was only going to watch the trains).

The only photo I got of the girls' morning at the circus was of the four dirt-bikes racing around on the inside of a steel cage.  Whoa!

Sunday afternoon we headed down to the UW campus to watch a Wonders of Physics show.  Again, I think it was a good experience even if people in the family didn't leave saying that it was a favorite activity.  As a family, we not only had the chance to see some interesting experiments, but we also got another chance to see how Anna handled an environment like this using her walker, not her wheelchair.  (We have some work to do regarding this.)

Ethan and I are still working our way through the winter months.  One afternoon last week we played outside in the snow together, building a snow fort.  Too bad the fort started to melt the next day and has been further destroyed by the rain of the last 24 hours.

Another favored activity recently for Ethan has been building Rube Goldberg type contraptions.  He started a few on his own last week, but we worked together to extend them a little more.  The one we did on Friday afternoon was cooler, in my opinion :)

And finally, it still is fun to have a dad in the house who likes to tinker.  Ethan found an ad for an "earthquake simulation lab" one day and proceeded to fixate on the toy.  We had many discussions about the cost of the toy, the length of its usage, etc.  Ethan had the idea that maybe Matt could build one, so we talked with Matt later in the day and he was just about as intrigued as Ethan.  Matt did a little research of his own and decided to spend part of his day on Saturday building a simplified version.  So now we have our own Earthquake simulator for the kids to practice their building techniques :)

Beyond the Medical

The last week or so would have been a busy one in our home even without the medical pieces.  We all made it through, even though some of us were a little more tired than usual, and we even have some fun memories from the different events.

Last week Kate had the monthly 4H meeting on Thursday night.  So far she is still really enjoying herself in this organization, even if she describes the monthly meetings as "those boring ones where everyone just talks".  This simply means she is learning to deal with all aspects of participating in an organization, and learning that those boring meetings are necessary to plan the fun events.

Friday morning we woke up to learn that school had been cancelled!  Hooray for snow days!  We knew a snowstorm was approaching when we went to bed on Thursday night, but were surprised that most area schools were closed with only a 5 inch snowfall.  The roads were even clear by about 9:30 or 10.  I won't complain, though.  I'm sure ours was not the only family that thoroughly enjoyed having a Friday in February off of school.

All three kids managed to play outside for close to an hour each.  We finally came up with a solution for Anna's cold hands and she was able to play outside until she was actually tired, instead of just cold.

Ethan rarely complains when he's out in the snowy weather.

Kate and Ethan found a variety of things to do in the light, fluffy snow, but building snowmen was not an option this time around.  The snow was just too dry.

Too bad I had been planning a major work day for myself on Friday.  But the kids were good sports and cooperated with my various tasks.  Ethan and I even did a grocery shopping trip in the afternoon while the girls stayed home.  The older the kids get, the more flexible we are able to be.

Saturday morning we cleaned in anticipation of guests in the coming days.  Then, while Ethan and Matt went sledding, the girls and I hosted eight kids and four other moms for our book club.  This group of kids has come a long way in the last year and a half in terms of their ability to discuss a good kid's book.

This time around Kate chose A Handful of Stars as her selection and she was instrumental in deciding on and asking the discussion questions.  Hooray for increased confidence!  The delightful story was short, sweet, and packed with good experiences and life lessons.  The kids and moms enjoyed the book, discussion, treats, and playtime/socializing.

From the book club, we headed into church for the annual Chili Cook-Off.  Although our entry didn't win, we received many compliments, especially from the younger people in the crowd.  Kate helped me serve this year, but we were still able to enjoy some fellowship and, of course, the delicious food.

Sunday afternoon we welcomed one of my college friends and her two 8 year old boys, who stayed until Tuesday morning while Alli continued to search for her medical residency location for the coming three years.  Having a few additional people in the house for a couple of days definitely raised the noise and energy level in our home, but we loved being able to host Alli and her family.

The five kids (mostly four for the more active portions) got along wonderfully well and I loved being able to catch up with Alli and share some time and space with her for a few days.

Since Alli was scheduled to be gone on Monday afternoon and Anna and I were due to be at her appointment, Matt took the afternoon off so he could take all three boys (Ethan, Zach, and Eyassu) sledding (again).

Here's a few highlights of their afternoon.  No one had any lasting injuries from the afternoon :)

Tuesday morning we all had to say good-bye.  In the car on the way to school, the kids shared the following with me:

"I think that was some of the most fun I've ever had" ~Kate
"I wish Alli and her boys could stay longer" ~Ethan
"Maybe we should plan a trip to Omaha sometime next summer to visit them" ~Anna

Matt and I were pleasantly surprised at how everyone in the family was able to handle the excitement and activity of the extended weekend.  We've all come a long way in the last year, or two, or three.

Now we're working to get back into our routines, even with Valentine's Day stuck right in the middle of the week.

Medical Updates

On Tuesday, February 6, Anna had a scheduled MRI.  Although we still wish that the radiologist's report would be NED ("no evidence of disease"), we are grateful that her scans remain very stable.

Since the report time that morning was 6:30 a.m., the rest of the family had minimal disruptions to their schedules.  Matt took Kate and Ethan in to school; Ethan went home with a neighborhood preschool buddy for lunch and playtime; Anna and I were home in plenty of time to rest and recharge before leaving to pick Kate up from school at the end of the day.

Monday afternoon was the follow-up neuro-oncology appointment.  As with many aspects of Anna's life, this appointment had plenty of ups and downs; the emotional roller coaster continues.

First the good news ... Anna's oncologist has cleared her to go an entire year between subsequent scans.  Actually, that's great news!

Not only has this milestone come about a year early and we will no longer be plagued by the MRI appointment schedule in August anymore, but Anna will only need the scans once a year for the next several years.  Plus, the medical staff was willing to coordinate the timing of this costly medical procedure so that we can meet our primary insurance medical deductible early in the year (which is partly covered through Anna's secondary Medicaid coverage).  It's taken us a few years and some mis-steps to figure out how to work within the system, but we are finally getting comfortable with the various aspects of insurance coverage.

More good news ... the social services staff we see at the neuro-oncology appointments only stops in to say hi.  They are pleased with the ongoing collaboration we have with all of the members of Anna's teams (school, therapy, etc.).

Roller coaster #1 ... Anna is scheduled to have another round of neuropsychological testing in early April so see how her unique brain functions.  We had our initial interview in the midst of our several hour appointment and came home with plenty of additional paperwork to be filled out.  The kinds of questions asked at these times not only remind me of all of the progress Anna has made in the last 3 and a half years, but also of how far she lies outside of the "typically developing" category.

Roller coaster #2 ... We made a deal with Anna's ophthalmologist back in December.  Instead of setting up another check-in appointment with him during January or February, we agreed to send him a page while we were all at the hospital at the same time.  This way he could just check to see if the cold Anna was experiencing had cleared up and allowed her vision to improve (and we could avoid waiting in his office for upwards of two hours like we did in December).

The cold had cleared up long ago, but her vision is not any better.  In fact, it's worse.  Her left eye has started drifting outwards again, her styes have returned, and her vision is bad, especially in the left eye.  Because of the extreme poor vision in her left eye, Anna's brain is starting to ignore the signals sent from that eye, which is why the eye is drifting.

After talking things through with the doctor, the current theory is that Anna's eyes don't make enough tears.  One possible side effect of the type of radiation Anna had is reduced salivary gland production and reduced tear production.  We already knew that Anna's salivary glands were affected and now it appears that her tear glands were, too.

I learned yesterday that the surface of our eyes is very sensitive to moisture levels.  For most of us, our eyes are continually bathed in tears to lubricate the surface and allow for optimal vision.  For some people, there are not enough tears.  If it is severe enough, the surface of the eye becomes "scratched" or "chapped" and vision deteriorates.  Right now it's almost as if Anna is looking through scratched up glasses, all the time.

Sometimes a person can add artificial tears (generic saline solution) in the form of eye drops to help.  If Anna were to try that, she'd need to use the drops every hour or so all the time.  Not very practical in our situation.

Yesterday I also learned that doctors can put an artificial plug in the lower tear drain (that little hole in the lower eyelid nearest the nose).  If and when that happens, the slow trickle of Anna's tears will be able to fill up her eyes and keep them naturally moisturized.  Any excess tears will drain through the upper eyelid.

So we're waiting for a call to schedule that procedure.  In the meantime, we will pick up some eyedrops to see if that helps.  At least it shouldn't hurt.

Once this problem is reversed, we will see how Anna's eyes are doing.  Theoretically, her vision should improve and the styes should go away.  Maybe, just maybe, her brain will remember that she has two eyes and will begin to recognize the signals again from her left eye.  Maybe, just maybe, when her brain recognizes the signals, it will then also remember to use the muscles controlling her left eye.

Then again, maybe not.  And maybe a long-term side effect of Anna's treatments is that she loses vision in her left eye.

Like I said at the start of this post, medical appointments with Anna can be an emotional roller coaster.

Welcome to February

February 3rd has come and gone again in our house with few noteworthy moments.  Most of the family doesn't seem to notice this particular date on the calendar, but it will probably be a long time before the day passes without my mental attention.  Maybe after next year, we will remember it more as Anna's survival day instead of Anna's diagnosis day.  We'll see.

The moments and memories of 2014 come to the surface relatively rarely nowadays, but the mental shrapnel of the traumatic times can still catch me off guard every once in awhile.

A particular song over the loudspeaker at a store.

A phrase or mannerism of Ethan's that is reminiscent of Anna at his age.

A dress similar to one Anna wore prior to cancer that I notice another child wearing.

A family with kids roughly the same ages of ours when Anna was diagnosed.  (How young they all must have been, especially Ethan!)

These are the little things that encourage certain memories to float to the surface of my mind when I least expect it.  Then they drift away as easily as they came.

In our home, we still have open communication about our experiences and memories.  I believe that we have dealt with, and continue to deal with, the events in our lives in a healthy manner.  Part of that means pausing and acknowledging when these memories arise.  So we will continue to talk and remember it seems appropriate, but will work hard not to dwell in the past.

Enough of that.

We made it through one of the few weeks with five school days in the past couple of months.  Everyone survived relatively well, with Matt biking to work two days and having two evening phone meetings and one early morning one.  By Thursday evening it was nice to finally be able to sit down and eat dinner together as a whole family.

In looking ahead to the next couple of weeks, I realized that if the kids wanted to make valentines for their classmates this year, we would have to do it before the weekend was over.  Everyone was amenable to making melted crayon hearts so we spent a good portion of Thursday evening, Friday evening, and parts of Saturday, peeling crayons and addressing valentines.  But now they are done!  And the kids enjoyed themselves!  Hip, hip, hooray!

The girls had some extra work this weekend, too, with Anna slotted to be special person in her classroom this week and Kate needing to make a box for collecting her valentines.  Kate is very proud of her box, designed and executed almost exclusively by Kate.

Knowing that snow was predicted for Saturday night, we made sure everyone got (most of) their work done on Saturday.  That way Matt was able to take Kate and Ethan sledding on Sunday afternoon before the SuperBowl without any issues.  Based on the pictures, videos, and stories, I think the three of them had a great time.

We're anticipating another round of snow tonight, but still cold, cold temperatures.  Hopefully, it warms up just a little bit so Ethan and I can get in a few rounds of sledding before the snow melts again!