"So How Was Anna Doing?

I typically have written a blog post at the beginning of each calendar year to provide others and ourselves with an overall update about how Anna was doing.  I'm going to write this post as if the last few weeks have not happened.  I had been hoping to share much of this information with those who loved and cared for Anna to keep everyone updated, but also to continue to spread awareness of how cancer treatments affect kids.

I recently looked back at the last couple of "How is Anna doing?" posts that I write in January and I'm glad that I have a record of my overall impressions of how Anna was doing at those different points.  When I looked at our post from January of 2018, I was shocked by just how much Anna accomplished during 2018.


Medically speaking, Anna is in a very good place.  At her most recent round of neuro-oncology appointments last February, she was cleared to go an entire year without seeing those doctors.  Her scans have remained very stable since treatment ended and her oncology team is confident that Anna's medical life is stable.  They are also confident that our family knows who, what, and when to ask if we have questions or concerns.

Anna's next MRI is scheduled for Tuesday, January 8, and in February we hope to officially have her labeled as a cancer survivor.

2018 brought about some fortunate and unfortunate discoveries with Anna's eyes.  In early January, Anna's left eye started drifting outwards (again) and her vision just seemed generally very poor.  Because of the relationship we have with Anna's ophthalmologist, we were able to get to the bottom of this over the course of the spring.

First, we learned that Anna's tear producing structures were damaged by the radiation treatments and so her eyes were not creating enough natural lubrication.  This made the surface of Anna's eyes very, very dry.  Basically, in addition to all of her other vision problems, Anna was seeing the world through some very scratched up lenses.

In March (I think?) Anna had plugs placed into her tear ducts to allow the surfaces of her eyes to be lubricated naturally.  I think of it as putting a plug in the drain so the slow drips of Anna's tears can fill up.  By the summer, the surface of Anna's right eye was much, much better, and by the fall, the surface of both eyes had healed completely.

But in the summer, Anna still had difficulty reading the eye chart at the doctor's office.  Again, because of the comfort level of our relationship with Anna's ophthalmologist, we asked questions and discovered collectively that Anna is near-sighted!  Since I got my first pair of glasses just before 5th grade, we're pretty sure that Anna's near-sightedness has absolutely nothing to do with her cancer or its treatments.

At the check-up with the ophthalmologist in December, Anna was seeing as well as she has seen in several years.  The tear duct plugs are doing their job; the glasses prescription is doing its job, too.  Her radiation-caused cataracts are stable, but the one on her left eye impairs her vision to the degree that if we ever chose to pursue correcting her double vision, Anna would first need to have a series of surgeries to remove that cataract, adjust her vision, and then realign the muscles.  We left the appointment knowing that there were options for continuing to correct Anna's vision, but no desire to pursue them for awhile.

During that same "check-up day" in December, we met with Anna's endocrinology team.  Anna's height and weight are following growth curves very nicely, even if the height curve is at around the 5%.  We have adjusted her growth hormone dosage a few times to accommodate her weight and also to see if we can get as much growth into her bones as possible before puberty hits.

Speaking of which, Anna will be having a few blood tests in January to check the levels of different puberty hormones, among other things.  Chances are that her pituitary gland isn't up to the puberty inducing job just like it was unable to initiate her growth.  Anna and I had frank discussions at the appointment with the doctor about what this might mean for her in terms of additional medications and their affects on her body.  It's nothing we can't handle.

We were able to avoid a few other medical appointments on that Thursday in December because we had the comfort and ability to communicate via mychart.  First, Anna is now being followed by a pediatric orthopedic specialist.  During a routine x-ray in May, the radiologist recommended Anna see an orthopedic specialist due to the slight curve of her spine.  We met the doctor in August and he informed us that Anna's scoliosis was very mild, but due to her muscular differences, he'd like to keep an eye on her in case she would ever benefit from wearing a back brace.

Anna had follow-up x-rays the day after Thanksgiving (there is actually a long story behind how it happened on THAT day) and the doctor was comfortable with waiting until the summer for another follow-up appointment.

In addition, we communicated via mychart with Anna's GI doctor.  He is very pleased with how things are going and was also comfortable with waiting until the summer for another follow-up appointment.  Before I share the details about Anna's oral eating/G-tube, here's a side story about that day of appointments.

Thursday, December 13, was probably one of the best appointment days that Anna and I have ever had.  We started with an 8 a.m. check-up regarding Anna's ankle braces and worked together on her social studies assignment (which was fun for both of us) while the braces were being adjusted.

Then, since Anna had expressed an interest in putting together a shoebox of gifts for our local Christian radio station's campaign, we went to Target.  Anna contributed some of her money while we contributed the rest and the two of us spend some time shopping and picking out items for a 5-10 year old girl in our community to open on Christmas.  I am so glad that Anna and I were able to do that activity together.  We dropped the shoebox off at the radio station a few days later.

After shopping, we headed to the eye doctor appointment.  Although we had to wait some (and met a pretty awesome 7th grade girl from Janesville and her dad in the waiting room), the appointment was perhaps one of our shortest ones there, ever.  Anna even made a witty comment to the doctor about the length of the visit as we were saying our good-byes.  During the brief times of waiting, we were able to fit in a couple of the games we brought along.

Between the eye appointment and the endocrine appointment, we grabbed Anna some lunch from McDonald's and had our lunches together on the first floor of the hospital.

Since we had a few extra minutes before the next appointment, we stopped by P4 to see if there were any familiar faces on duty that day.  Since we didn't see many, we checked to see if Lynne was working on the PICU that day, but she wasn't.  At least we tried.

The endocrine appointment went smoothly and we were even home before Kate and Ethan got back from school (a neighbor picked them up that day).

Back to the updates ...

In terms of Anna's oral eating, this kid has made so much progress in the last year.  She began to be weaned off of her g-tube formula last spring and, as of her 11th birthday, no longer required formula as part of her daily nutrition.  We kept up with her pureed foods through the summer and the beginning months of school because there were enough other transitions going on to worry about.

However, in December, Anna and her speech therapist came up with a plan to wean her off of those, too.  Anna was so motivated that she wanted to start the planright away.  Sure enough, after cutting out the first round of purees, her appetite increased and she was able to make up for those changes.  We have hope that Anna will be completely off of g-tube feeds sometime during 2019.

The extent of this news means more for those in the speech/feeding/g-tube community.  When we met Anna's first clinic feeding therapist in the fall of 2014, we asked the difficult question of where all of this therapy would lead.  In short, would Anna ever be able to eat again?  The amazing and experienced therapist we worked with at that time said she didn't know, that her best guess was that Anna might be able to eat for pleasure some day, but she wasn't sure if Anna would ever be able to get all of her nutrition orally.

Anna shot for the moon and, with the support and encouragement of those around her, reached it with this goal.

In terms of Anna's physical skills, this kid has also made so much progress in the last year.  Before participating in her CI Summer Camp during July, she made it clear to those around her that her goal was to use her crutches as her main form of mobility in 6th grade.  The first few times she relayed that goal, whether it was to us or to different therapists, we were a little skeptical, which is pretty humorous since those of us closest to Anna know how much "goal oriented persistence" she can have.

Sure enough, by October, Anna was using her crutches almost exclusively at school.  The only times she used her walker were when she had to walk long distances in crowded hallways (middle schoolers are the opposite of self-aware when it comes to their own bodies, let alone a classmate's crutches), during gym class (when she wanted to move faster instead of more carefully), and at the end of the day when she came out to the van.

At home, Anna often chose to leave her crutches in the van and simply walk around our house unassisted.

We are almost due for a plan of care update with Anna's PT, but since I don't have that data, here's a video I got of Anna during a PT session on December 12 when she was walking on the treadmill.  This video was taken after Anna had already done about 10-15 minutes on the treadmill, with the first 10 or so minutes at an incline.  Luke made a point to get my attention so I could witness what was going on (I'm so glad he did).  My first video didn't turn out very well so I asked Anna to do it one more time so I could send Matt a video.  Of course she agreed.

Again, the extent of this news means more to those in the physical therapy community who knew Anna in 2014 or 2015.  During Anna's last chemo visit in the fall of 2014, I had a frank conversation with her hospital PT during which I asked her where all of this therapy would lead.  In short, would Anna ever be able to walk again?  The amazing and experienced therapist who worked with us beginning in February of 2014 said that she didn't know, that her best guess was that she could see Anna using a walker someday, maybe.

Anna shot for the moon and, with the support and encouragement of those around her, reached it with this goal, too.

Moving on to school.  Anna had a very successful transition to middle school in the fall.  We are extremely thankful that Anna's aide from 5th grade was willing and able to transition to 6th grade with her.  Although this aide will probably not always stick by Anna's side, having her knowledge and experience of Anna made the transition to a whole new team much easier.

Anna's 6th grade team, by the way, is awesome, just as all of her other teams have been.  It didn't take long for our family to create and develop the necessary relationships so that we could all work together to help Anna be as successful in school as she could possibly be.

And succeed she did.  With the proper accommodations (more so than modifications), Anna earned A's and B's in all of her classes during the first quarter.

Cognitively speaking, Anna still struggles in certain areas.  She went through a round of neuro-pyschological testing last spring to check on her cognitive functioning.  Although Anna made some progress with the speed of her processing, some of the same deficits of which we learned in 2015 were still present.  In addition, Anna showed new weaknesses in her executive functioning skills.  However, as my mom has told me countless times, the first step to making progress is knowing what is wrong.

During the summer and fall, we set in place some new strategies to help Anna with her specific executive functioning deficits and have seen improvement.  Many homework assignments and other household activities were approached in our family with more life skills in mind than are probably typical.

But isn't that what the middle school years are all about?  Learning how to learn ... learning how to think ... developing the skills necessary to complete a task from start to finish ...

But middle school is also about friends.

After a few years of trying to figure out how friends fit into Anna's life, she has started to pursue friendships on her own this year.  In addition to her beloved companions from her special education circles, she has begun to get out of her comfort zone and sit with other students at lunch, talking about them at home, too.

It has always been hard to let go of this part of Anna's life, but middle school is also about independence.  We worked very consciously this fall to provide Anna with as much independence as was appropriate.

And then there is her faith.

The confidence and clarity of Anna's faith is unique to a child her age, or to a person of most any age, for that matter.  For a child with significant memory deficits, she often surprises us during morning devotions with what she remembers of the Bible.

Hers is not a naive faith, however; she has age-appropriate thoughts and questions.  Still, she has an uncanny ability to reduce some of the more difficult faith questions down to a succinct explanation.

And she is always so certain ... about Jesus and his love.

Thank you for reading this and allowing me the opportunity to get these updating facts out of my head.  Below are the prayers that we included at the beginning of 2018.  Thank you for praying them.  They were answered.

Thanksgiving
Please thank God for the daily gifts he grants us, especially the ability to spend time together as a family of five.
Please give thanks for the continued positive relationships Anna has with her educators, therapists, family, and peers.
Please thank God for all of the progress that Anna made in 2017.
Please give thanks for the supportive and caring community around us that accepts Anna for who she is and rejoices with us when she makes progress.
Please thank God for the continued insights and wisdom of the doctors, nurses, therapists, insurance employees, billing staff, etc., still involved in Anna's care.  2017 did not go by without their help and experience.
Please thank God that Anna's cancer is considered in remission and than she dodged the bullet with regards to some of the radiation/chemotherapy side effects.

Requests
Please pray that Anna can continue to use her intelligence and determination to make progress in all of her goal areas, both physical and cognitive.
Please ask God to continue to surround Anna and our family with people filled with the fruits of the Spirit.
Please pray for the continuing gifts of love, joy, peace, patience, wisdom, and self-control for everyone in our family.
Please pray that God's love can shine through Anna to the people around her in life.

Shoot for the moon time ...
Please pray that Anna learns to eat completely orally ... a.k.a. no g-tube
Please pray that Anna learns to walk independently.
Please pray for the patience to live contentedly until these things happen.