Pictures ... finally!

With summer winding down, here are a few pictures of some of our recent summer activities.  In comparison to last summer, this one has been much better.  We still have unique challenges, but we have figured out how to make things work, for the most part.

The kids and I went to Olbrich Gardens a few weeks ago for the Blooming Butterflies exhibit.  We liked the butterflies in the conservatory, but lost interest and energy while walking through the gardens.

The ramp on the Rose Tower was a highlight again.  Anna thoroughly enjoys going down ramps these days; she loves the feeling of going fast and, surprisingly, has good control of her wheels on ramps.

One evening in early August, we met Matt at a local county park where he enjoys mountain biking.  The kids played on the playground before we had a picnic dinner at the top of the big hill.

Kate and Ethan ran down (and slowly climbed up) the hill a handful of times.

Although Anna couldn't run up and down the hill this time (she was the leader of this activity in years past), she liked going down the slides and goofing off with us.

It turns out that Kate can read Bill Peet books by herself now.  She entertained both siblings one evening by reading The Caboose Who Got Loose to them.

Food pictures ...

Here's one of the peach trees after picking about a third of the peaches.

The first third of the peaches ... yum!

One of the peach cobblers ... yum! yum!

I think we have a picture of Kate eating sweet corn just about every year of her life.  This girl loves her veggies!

This past week was eventful in our yard because it was our turn to have our driveway redone and even out some of the random landscaping out there.  Now Anna will have a much easier time going from place to place in the driveway.

The equipment and work was, of course, very interesting and entertaining for the kids.

The afternoons this past week were not warm enough for playing in the pool, so we skipped Ethan's nap on Wednesday and headed in to the zoo.  Then the next day we went to a local park together.  These outings are a bit trickier for our family than they might be for another, but we make them fun in our own way.

However, I have made note of the fact this summer that in all of the "public" places we have visited, not once have we run into another child who uses a wheelchair (or walker, or other mobility device).  When I mentioned this to Matt, he reminded me that we don't actually go out very often so the chances of running into someone else using a wheelchair (besides at therapy, of course) are pretty slim.

The week culminated with a field trip day over to Milwaukee to the Milwaukee Public Museum.  Anna, Kate, and I visited this museum once a year or so before Ethan was born and they both have fond memories of the trips.  They were excited to go again, see some of the exhibits they remember, but also learn something new at other exhibits.  The kids and I had a wonderful day together, even though the experience brought back memories for me of the last time we did this in January of 2014.

This time around, poor Kate's brain was on overload after about an hour and a half.  She was so interested in every little detail she could find; this kid is soaking up so much from the world around her these days.

After our lunch break, everyone was ready to enjoy the museum for another hour so.

Ethan was our family's "alarm" clock.  Around 1:30, he let us know that he was d-o-n-e.  We packed up and headed home.  Ethan was so tired that he fell asleep on the way out of Milwaukee, while there were still plenty of construction trucks to watch!

Now we have one more week before school begins.  We have a few hopes for what we can still do before life transitions into school mode, but I think I will be most conscious of giving Anna and Kate as much open space as possible because they won't have nearly as much free time once September 1 arrives.

MRI results and trip

The preliminary results from Anna's MRI on Wednesday showed that everything is stable.  As the doctors told us early on in this whole process, the further Anna gets from treatment, the safer we all feel.

Wednesday was a long day for us, though.  Although Anna does not experience any additional nausea from the anesthesia (which is certainly a good thing), she still doesn't wake up very happily from it.  After leaving the house around 6:30 a.m., she and I didn't make it home again until after 2:30 p.m.  She was still a bit tired and grumpy, but we tackled the last few rows of corn anyway.

The trip up north was memorable, but not necessarily in a good way.  Anna was never our easiest child to parent, especially when she slept away from home.  She was also pretty sensitive to different sensory environments, even before cancer and its treatments.  In fact, I have very clear memories of how trips to see grandparents often included tears and tantrums at some point for her.

When Anna was six, she finally was getting to the point where she could handle overnight trips without becoming ridiculously overtired and having a major meltdown.  We are kind of back to square one in that regard now.  In addition, being ridiculously overtired and overstimulated means different things for our kid after treatment.

From this experience I learned that I cannot yet handle overnight trips with all the kids by myself, even if we are simply spending time with family.  The physical and emotional energy required to be Anna's parent seems to be too much for one person (or at least me) right now.  Besides, I really, really, really missed Matt.  We parent our children much better as a team.

Kate and Ethan had a good time, however.  And Anna and I had fun for the first 36 hours or so.  Kubota rides through the woods, blueberry picking, blackberry picking, fishing with Grandpa, kayaking with Grandma, playing with toys, visiting a beach, and spending some time at a local nature center.  Anna and I only did a few of these activities, but they were fun for the most part.

We left a little earlier than we had planned on Saturday, but came home to the smell of *another* peach cobbler baking in the oven; Matt knew that Anna and I were having a rough time, and that the trip home was less than ideal.

Anna took a solid nap on Saturday and felt much more like herself in the afternoon and evening.  Ethan only slept a little in the car and was simply beside himself with tiredness by Saturday evening.  Kate weathered everything like champ.

Next update will include more pictures, I hope.  None from the trip, but I still have some on the camera that need to be uploaded.

Updates

Time for a few brief updates.

Kate and Ethan left this afternoon (Tuesday) with my parents to spend a few days at their home (and in "Grandpa's Woods").  They needed a break.  I needed a break.  We love them dearly, but they have a lot of energy.  With everything else going on, it's hard to provide them with all that they need physically.  And they are very loud.  Maybe that's just Kate, though.  She asks a lot of questions, comments on just about everything and anything, and just generally talks a lot.

Besides, we needed childcare for those two for Anna's MRI day on Wednesday and we all thought this would be fun.

Anna and I will leave on Thursday to join them for a few more days.  Matt gets to stay home and have some space here at the house.  I used to take the kids up to my parents' place every summer like this, just to give Matt a break (and me, too ... my parents take really good care of us :).  We thought it would be a good time to try it again.

Overall, Kate has been having a good summer.  She is loving her free time and her reading time.  She enjoys coming along to therapy; she likes the acting class; she loves playing in the pool.  She and Ethan have continued to build a special relationship during these past few months.  She and Anna have also rediscovered some of the joys and trials of sisterhood.

Ethan is still a joy.  His personality is priceless and his sense of humor cracks us up most days.  Favorite quotes recently are:
"Does it have wheels?" - Ethan asked Grandma when she was telling him about a toy at their house.
"I'm going to go away." - What the boy says as he leaves a room when he is mad and wants to pout.
"I want to show them _____." - What he says whenever we do FaceTime or Skype.  He wants us to lead other people around the house to see everything.

I'm looking forward to being able to spend more quality time with this boy in the fall.

Anna is continuing to make progress with just about everything.  However, those areas of progress are not always visible to others, unless they are trained in the specific area of improvement and/or have the perspective of where Anna was a year ago.

I think Anna will be ready for school to start again.  As when she was entering Kindergarten, I am beginning to realize that I simply can't provide her with enough opportunities to grow as she could.  Being her mother, nurse, occupational therapist, physical therapist, speech therapist, and feeding therapist are enough.  I'm ready to let someone else be her teacher :)

Garden time ... August is one of the busiest months.  Somehow canning season kind of sneaks up on me, but once it hits, there is no turning back.  Everything rolls along rather smoothly during June and July until the first week of August and then ... bam! ... the corn is ripe!  The tomatoes are ripe!  And now there are peaches ripe, too?!

I got fed up with picking beans, zucchini, and cucumbers multiple times a week so most of those plants have been pulled up.  We left just a handful of plants to keep us going for several more weeks.

The zucchini plants weren't pulled up before we had zucchini bread, zucchini muffins, zucchini cookies, burritos with zucchini, zucchini-sausage casserole, zucchini fries, zucchini orzo, zucchini chips, frozen shredded zucchini, frozen zucchini puree for soups in the winter, and plenty of sauteed zucchini.  And. It. Just. Kept. Coming.

When Matt and the girls bought me two peach trees four years ago, little did we know that the peaches would ripen at the same time as some of the other labor-intensive crops like corn and tomatoes.  However, I have been waiting four years for our trees to make a sizeable amount of peaches.  14 quarts canned peaches, one delicious peach cobbler, many lunches, dinners, and snacks of tasty, juicy peaches later, and I will definitely say that they were worth the wait.

When I realized that the corn and peaches were going to be ripe at almost the same time, the weekend before our trip up north, the weekend before Anna's MRI, when life is already full enough on a daily basis, I called my parents.  Ever since we have had kids, I wouldn't be able to make it through the busy gardening times without them.

My mom has been known to get up early to weed my garden for me (when Ethan was a baby); pick green beans as the sun comes up (last summer, but also when Anna was a toddler - we did that one together); weed and plant things (when Kate was an infant); help can tomatoes; and do just about anything I ask.  Before it starts, she usually tells me that she enjoys it, but I often wonder if she regrets that statement after hours of processing corn :)

This time, we rearranged "the plan" and they came down last night to help process some of the corn this morning, all before driving Kate and Ethan up to their place.  I've gotta figure out a better way to make this all work :)  The kids are as helpful as they can be, but there is still a lot of corn.  Maybe subsequent plantings about a week apart would be the way to go.  Then it's not ripe all at one at least.

In the midst of some of the craziness, we have still been able to do a handful of fun things.  Someday soon I will post those stories and pictures.  But not tonight.  Too many things to do tonight.  And Anna has to report to the hospital at 7 a.m. tomorrow morning.

But my house is picked up for now and there will be no young children to get out toys, clothes, books, etc. for several days!

Neuropsychological testing

We have already grieved many aspects of "former" Anna.  Physical abilities, overall health, friendships, family activity options, and eating, to name a few.  Having Anna undergo neuropsychological testing put labels on what we, as parents, have already observed.  However, seeing the cold, hard facts, as well as specific diagnoses, still brings on grief.  I am sure that we will have many more opportunities to grieve in the future as well.

The testing results did not bring many surprises.  Overall, Anna is a relatively intelligent kid who scored slightly above average on many aspects of her cognition.  She is not (and never was) a genius, but she is a good thinker.  She has definite strengths in her verbal and language abilities as well as her use of logic and problem solving skills.

Anna's major weakness observed at this time is "slow processing speed".  She also demonstrated deficits in phonics, but at this point no one knows if this is from a learning disability or because she missed out on about a year of classroom literacy instruction.  In addition, she has a decreased memory capacity.  Once the information gets to her memory, it's locked in there tightly, but she can only get so much in at a time.

It has taken us a few weeks to process the diagnosis of "slow processing speed".  (Taking time to process slow processing ... ha!)  One of the potential side effects of radiation to the brain is decreasing the speed that messages are sent throughout the nervous system.  The messages still get there, but the speed is lower than what it would have been prior to radiation.  More radiation = more damage = slower speed.

Anna's cerebellum received the most radiation by far, both in terms of the number of treatments as well as the strength of each dosage, since that was the location of the tumor.  Almost all muscular related messages are routed through this part of the brain.  Thus, any messages that the "thinking" part of Anna's brain sends, get slowed down as they pass through the cerebellum.  For anyone who has watched Anna write her name in the past year, they can testify to the fact that she does this s-l-o-w-l-y.  The neurologist described Anna's motor skills as slow, but careful.

In all honesty, processing speed was probably never one of Anna's strengths.  She was always a slow, but careful worker.  Never to the point of needing special intervention, however.  Now Anna is significantly slower.

In addition to the radiation to the cerebellum, Anna also received high dosages of radiation to her whole brain and spinal cord, since the cancer had spread everywhere in her central nervous system.  When motor skills are taken out of the equation, Anna's brain still sends messages more slowly than it would have without the radiation treatment.  Messages also travel more slowly than they would in a typically developing 8-year-old's brain.  Such is the legacy of radiation.

Sigh.  Living with Anna for the past year and a half, we knew this already.  Long ago we adjusted our life to accommodate the extra time it takes Anna to do just about anything.  However, as when Anna was evaluated at her new therapy location and her gross motor skills came back in the "less than 6 months old" category, putting specific numbers on just how slow Anna can be was difficult for us to take.

Although there isn't a magic medication or treatment to increase processing speed, we have seen steady improvements in Anna's speed, strength, coordination, and stamina, especially in the last 3 or 4 months.  We will continue to work on a multiple leveled approach, helping Anna make improvements, as well as adjusting our lifestyle.  For example, we recently downloaded a dictation app for the ipads so that Anna (and Kate) can practice their writing skills without having to actually, physically write so many words down.  But we also plan for extra time for most simple activities.

Now we know the words behind why we have prayed so often for patience :)

What makes me most sad about this whole thing is that others often assume Anna isn't as smart as she truly is when they interact with her for short periods of time.  Even in comfortable situations, it takes Anna longer to get her words out (slow oral motor speed).  In new, stimulating situations, not only is her brain struggling to get those muscles to move, but is is also trying to sort out all of the sensory input.

On to the good news from the neuropsychological testing.

Many aspects of Anna's treatments and medications (initial surgery, radiation, chemo, high-potency steroids, etc.) put her at risk for developing problems with her executive functioning skills.  Disorganization, difficulty with multitasking, inability to follow through, lack of inhibitory control (a.k.a. impulsivity), distractability ... all signs and symptoms of ADD.

As of now, Anna shows absolutely no signs of difficulty in these skills.  In comparison to the neurologist's demeanor when she shared with us the "slow processing speed" diagnosis, she was positively upbeat when sharing the results of Anna's executive functioning skills.

We have learned so much in the last year and a half.  And I'm sure there is so much more to learn.  We will continue to go forward with the knowledge that we have and do our best to enjoy life.

Time for Prayers

Thanksgiving
Please give thanks that the timing of the testing happened when it did, instead of at the end of the summer.
Please give thanks for the incredible life-long cancer center available to us here in Madison; we have never had to travel far for any of Anna's medical care.
Please thank God for all of the progress that Anna continues to make, in all of her skills.  Those in her life who have experience in physical and cognitive rehab continue to make note of her great progress.

Requests
Please pray for patience for us, as you have all along.
Please pray for wisdom for us, as we work to educate Anna's new educational team about how to best help her learn this coming year.
Please pray for wisdom for us, as we work to find various adaptive strategies to help Anna reach her highest potential.
Please pray for Anna's peers, teachers, and soon-to-be classmates, that they find the time and patience to get to know the Anna who was simply slowed down by her treatments.

Thanks, as always, for your support and prayers.

To fly or to drive

My brother, Adam, is getting married this fall to a wonderful woman whom we are looking forward to embracing as family.  Hooray!

The wedding is in Colorado, near where they live.  Great!  We love visiting the mountains.

But wait ... how do we get there?

Mapquest says the driving time is about 17.5 hours.  Hmmm ...  That seems like a long time in the car.

What if we fly?  The flight is only about 2.5 hours.  Definitely doable.

But flights from the Madison airport are EXPENSIVE.

What about flying from Milwaukee?  The tickets are about half the price.  Driving an hour or so to the airport to save a bunch of money is worth it.

However, if we fly to Denver, we would still need to rent a van to drive the rest of the way with our family, plus a wheelchair.

No big deal.  If we add up the time it takes to drive to Milwaukee, fly to Denver, then drive the rest of the way, we are still ahead than if we were to drive the whole way.

But wait.  We have a child with multiple physical challenges.  How does that make flying look different for our family?

1. First the wheelchair ... At what point would we need to relinquish the wheelchair?  Where will the wheelchair get stored on the plane?  It is very important that Anna's chair is safely returned to us at the end of the flight.

2. Next seating ... What kind of seating options would our family have?  Two typical kids, one with special needs, two adults.  Hmm.  That's tricky.

3. Now carseats ... What about Anna's carseat?  She needs a special carseat to be safe and feel comfortable, in cars and in aircraft.  Does the carseat fit on the airplane?  How do we carry it (along with everything else) through an airport?

4. Tube-feeding ... What about the TSA guidelines regarding food and liquids?  We would need Anna's formula, pureed foods, and medicines in our carry-on bag.  What kinds of doctor's notes would we need?

5. Security ... What about security?  People in wheelchairs automatically get sent to a different line so their
wheelchairs can be inspected carefully.  How much longer would that take?  What do we do with the other kids during that time?

6. Luggage ...  Whenever we travel we have lots of extra "stuff" we need to pack, medical and otherwise.  How many bags would we need to check?  How much does this cost?  What about carry-on bags?

That doesn't even take into consideration the fact that we have three kids who have no memory of flying before.  That can be tricky in and of itself.

And one of those kids has difficulty in new sensory environments and becomes fatigued easily.

And what if the flight were delayed?  Perhaps even for multiple hours.

And what if Anna threw up?  On the plane or just in the airport or rental van.

And what if someone, anyone, was unkind or insensitive to our family's needs and created additional stumbling blocks?

Come to think of it, 17.5 hours of driving doesn't sound too bad after all.  Many of the unknowns in the journey become knowns.


Plus, if this trip works, then maybe another one in the future to visit other family sounds more feasible, too.

Note: As I have said before, we do not want, or expect, pity from others.  However, I share this experience to illustrate some of the challenges that are presented in our life.  Other families have other challenges.  Imagine the challenges of traveling for a family with a child on the autism spectrum, or one with cognitive disabilities, or even traveling with a person who has food sensitivities.

If you learn one thing from the stories that we share, I ask that it be an awareness that every person has a complex story to share, complete with their own strengths and weaknesses, their own journey of ups and downs.  Be aware of the depth of those around you.  As such, be kind, caring, and slow to judge.  Teach your children to do the same.