Rest and Respite

We're finally (almost) better.  Ethan still has a lingering cough and runny nose and I have a bit of congestion, but we are otherwise past the virus.  The last two weeks have been some of the roughest that we have experienced in quite awhile.  But the struggles and valleys we go through tend to make the happy times all the more enjoyable.

I'm glad we embraced the idea of flexibility again last weekend prior to Monday.  That particular day had at least a dozen different "plans" in the days leading up to it, and even the day of, it had about five different "plans" until one finally came to fruition.

In the end, Anna didn't have therapy in the morning because her OT was ill, but that was fine by us since Ethan was still miserable (and didn't sleep much Sunday night).  Matt was able to reschedule a meeting so that he could come home for the afternoon to be with Ethan while I took Anna to the hospital for a few appointments.  The day ended better than it began.

Anna (and the rest of us) got good news at her appointments on Monday.  The best news was from the follow-up echocardiogram and visit with the cardiologist.  This kid's heart is back to "normal", after a year of digoxin, in addition to the blood pressure meds from last summer, to help it heal.  We don't exactly know what her normal heart function was prior to cancer, but we can only assume it was fine.  Now we are told that her ticker is functioning on "the high end of normal".  Woohoo!  She is officially released from the care of the cardiologists.

No one can say for certain what caused her progressive heart failure last spring.  The best guess is that three months of consistent fast heart rate in addition to three months of high blood pressure was just more than a heart can take.  It was put under too much stress for too long and so the muscle fibers were weakening.  But now they have healed.  Great news.

We also saw an oncologist and nurse practitioner, albeit not Anna's primary ones, for a physical prior to Anna's next scans in April.  At this appointment, it was decided that we can start reducing the amount of Anna's different supplements, mainly the kphos and magnesium.  Her digestive system has healed enough that (we hope) it is able to absorb more essential nutrients and thus not need as much supplementation..  Anna's blood chemistries will be checked again in April to see how everything looks.

The oncologist said her lungs sounded perfectly clear.  Good news, especially after fighting that nasty virus for more than a week.

Tuesday we were able, thankfully, to take Ethan and Anna up to my parents' home for an overnight visit.  Kate had a wonderful time there before the rest of us came, although she admitted to me that she was starting to get homesick by the end.  I think she thoroughly enjoyed being the center of attention for a couple of days and not having to abide by the schedule of either her younger brother or older sister.

Visits in March up to my parents' home have been fun and education in recent years since they have taken up the hobby of making maple syrup.  The addition of "the sugar shack" a few years back has added a new dimension.

In our 24 hours there, we were able to help collect maple sap, watch some of the syrup making process,

go for Kubota rides with Grandpa,

play Sudoku on Grandpa's ipad,

and build a snowman (and snow baby).

Although the ground had been clear of snow for awhile prior to our arrival, several inches fell overnight.

Anna did pretty well with the trip.  However, we were reminded by this experience that she is the kind of person who does not sleep well away from home.  Now her "second-day fatigue" manifests itself in different ways than it did prior to cancer.  As always, we will take what we learned and apply those lessons to future trips.

Thursday and Friday of this week have given me a sneak peek into how our summer may look.  We're in the process of figuring out some of the logistics.  It will certainly be a different summer than any we have had previously, but hopefully it will have a different kind of fun, and a bit more relaxation, than last summer.

Time for Prayers

Thanksgiving
Please give thanks for the fun and safe trip for our family this week.
Please thank God for all of the good news we received at Anna's appointments earlier in the week.
Please give thanks for the continued flexibility of Matt's job.
Please continue to thank God for all those working with Anna and our family, for their wisdom, caring, flexibility, and understanding.
Please give thanks that we were all able to heal and recover from RSV prior to school starting again.

Requests
Please continue to pray for wisdom, peace, patience, joy, and rest for all of us.
Please continue to ask God to grant these same traits on those working with Anna and our family.
Please pray, specifically, for wisdom as we work to figure out the logistics of the summer.
Please continue to pray for Anna's increased strength and endurance, in all of her recovering skills.

Below are the prayers from the Lutheran Hour Ministries Daily Devotions from the last week or so. 

March 20 - "Heavenly Father, You glorified Your Name in the sufferings of Your beloved Son Jesus Christ.  Glorify Your Name through me as You give me strength and courage to face the difficult times in my life."
March 21 - "Heavenly Father, I don't always understand the things I see around me.  Help me to come to your Son's cross, that there I may know Your love and receive Your strength."
March 22 - "Lord Jesus, forgive my wandering heart.  Help me to see Your great love for me and remember what You have done to save me."
March 23 - "Lord Jesus, Your steadfast love is amazing to me.  Keep reaching out to bring me back from my sins."
March 24 - "Lord Jesus, bring peace to my troubled heart and mind, and give me the Spirit that I may believe in You always."
March 25 - "Lord Jesus, thank You for Your victory over our sin, death, and hell.  Thank You for the promise Your resurrection brings - eternal life with You."

Ugh.

It was inevitable that the virus was going to spread throughout our family.  Everyone has experienced it, albeit with different symptoms.

Anna went through the worst of it, but Ethan's experience has been a close second.  He started feeling under the weather on Thursday and throughout the day developed a croup-like cough.  Friday and Saturday he was miserable.  He's still down today and his cough isn't much better.

However, his symptoms are more manageable than Anna's were.  His body has the ability to regulate its own cortisol levels (unlike Anna who will require stress dosing for months to come), and we can trust his body's self-regulation in terms of food intake and rest (unlike Anna who has multiple reasons which might make her throw up and/or feel tired).  Plus, Ethan has proven that he can sleep adequately, even in the midst of an unpleasant cough.  Anna, however, is still waking up with coughing fits.

Kate, Matt, and I had more typical cold-like symptoms.  Of the three of us, I probably felt the worst for a few days.  By Friday, when both girls were going to be home from school anyway, I knew I couldn't function as a parent with how I was feeling physically.  Matt stayed home and I stayed in bed.

Kate is currently on her way to my parents' home as part of her Spring Break tradition.  She and Ethan were supposed to go together, with the rest of us joining them on Tuesday afternoon.  But Ethan is sick, so plans change.  The "new" plan is for Matt, Anna, Ethan, and me to join Kate on Tuesday afternoon and then we all come home on Wednesday.  We'll see if that happens.

I have been reminded again in the past few weeks how little control I/we have over life's circumstances.  We can make plans and have hopes, but then something like RSV hits (or brain cancer, for that matter) and throws everything off for a few weeks (or years ...).  It's hard to stay positive and optimistic during these kinds of trials.

But we're trying.  We still are hopeful and continue to make plans.  This virus has taught me, though, that being flexible and letting go of control are important characteristics to continue working on.

Time for Prayers

Thanksgiving

Please give thanks that Anna is on the mend.
Please give thanks that no one besides Anna developed much of a fever.
Please thank God that Kate is well enough to have some fun with Grandma and Grandpa.
Please thank God that Matt has been able to take time off of work to help take care of the family.

Requests

Please pray for wisdom, healing, peace, patience, joy, strength, and rest for all of us in our family.

Over the worst of it?

We think Anna may finally be over the worst of this virus.  However, it's going to take her awhile to regain her energy and heal completely.  I relate her experience with RSV to a very bad case of the flu that affects the whole body (extreme fatigue, nausea, diarrhea, fever, headache, etc.), but with the coughs added on as a bonus.  Even with Vicks, a humidifier, ibuprofen, and cough medicine at night, she has woken up every night since Saturday with a severe coughing fit that lasts 30-90 minutes.  Last night it started around 3 a.m.  She only dozed off and on after that point.

In hindsight, it would have been nice to have been given the "flu" perspective early on by one of the many medical professionals with whom we have spoken in the last 5 days.  I'm pretty sure that I told every doctor/nurse "We haven't ever had RSV in our home."  Maybe one of them should have taken the clue and given me more information besides "It's no fun.  Make sure she doesn't get dehydrated."

If we had known more, we may have opted to tackle this illness head-on with 24-hour stress dosing of steroids, non-stop fever reducers, a diet of pedialyte and dilute juices, non-stop humidifier, and confining Anna to her bed starting on Saturday morning.

But we didn't implement all of those pieces until today.  We're learning as we go.  It took us awhile to sort out why Anna was so tired.  Was it from adrenal insufficieny?  Or because she hadn't (hasn't) slept normally since last Thursday night?  Or because her body was fighting this virus?  Or a combination of all three?  Her health is complicated.

Who knows if knowing earlier would have made a difference with the course of the virus?  Who knows if it would have made any part of life easier recently?  At least maybe it will help starting now.  We were given the unintentional reassurance last night by yet another doctor that "at least she can keep down the pedialyte".  So I guess it could have been worse.

Matt came home early on Monday and was able to take a nap.  I also took a nap on Monday afternoon.  Matt stayed home on Tuesday because I needed to schedule Anna for her summer therapies in the morning, but also because I needed a bit of a break.  I took Ethan to his gymnastics class and then did a grocery shopping trip in the afternoon in preparation for being home-bound with Anna the rest of the week.

A friend offered to watch Ethan this morning and then Kate is spending some time at their house this afternoon as well.  Now that we, hopefully, have a better perspective on what Anna is fighting, and the other kids aren't home today to complicate the situation (as it was on Monday when Ethan would wander outside on his own while I was trying to take care of Anna), we can do our best to help her heal.

In addition to the medical pieces, this virus is tough for Anna and her personality.  She is so accustomed to pushing herself to the limit (in therapy and in life in general), that she wanted to keep doing when she could even when she was feeling sick.

We are planning on Anna being home from school the rest of the week.  Next week is spring break so, again hopefully, she will have the opportunity to catch up with her schoolwork in addition to resting.

Back before kids when we were more involved in our church's small group Bible Studies, I remember discussing the topic of "Spiritual Warfare" and the imagery of angels and demons battling for souls.  That imagery has been on my mind the last couple of days as this experience has marked a very low point for me spiritually.  I still don't see any purpose in the events of the last few days, other than to continue to frustrate our family.  But at least it doesn't all feel as hopeless and utterly pointless as it did a few days ago.

And, like I said, we think Anna may be over the worst of it.

Miserable

If anyone ever wanted to torture our family in a very unique and specific way, they would have picked this illness.

Anna has always had a hard time with colds involving coughs.  Even before cancer, she could sometimes cough herself into throwing up.  The nighttime coughing episodes were particularly frustrating for her, and therefore for us as parents who sleep in the same house.  Now she has a whole host of other issues to complicate a virus like RSV.

For me, personally, listening to a family member cough again and again is as annoying as hearing nails on a chalkboard.  Imagine listening to that sound for hours on end day and night.

Sunday night was no better.  Monday morning started at 5:15.

Really?  On top of everything else we have dealt with?  Now this?

Were we getting too comfortable with our new normal?  Did we experience too much happiness last weekend?  Were we trying to make too much lemonade with our life's lemons?

It almost feels spiteful.

Anna is not happy.  We are not happy.  In fact, we are all miserable.

Anna has already experienced regression in every single one of the skills on which she was making progress.  Two steps forward, three steps back in terms of her rehab.

There is a definite lack of love, joy, peace, patience, kindness, gentleness, goodness, and self-control in our home right now.  All those things we were joyful about a single week ago are gone.

And Kate is starting on a cold now.  It seems to be a different one than RSV, but maybe it's too soon to tell.  All we need now is a stomach bug.  That would be almost as fun.

Kate and Ethan are being neglected again.  There's just no energy to devote to anything besides the bare minimum.

Obviously the prayers for a speedy recovery and rest were answered in the negative.  In fact, we have experienced the opposite since Friday's ER visit.

Please pray that we experience God's presence in some real way because right now we feel very, very alone.

Sick

Anna was diagnosed with RSV (respiratory syncytial virus) on Friday night.  We have had a miserable few days, and nights, to say the least.  We barely had a break from the cold that went through in February, and now this.  It's not fair.  Earlier today I would have had a much longer rant about the unfairness of it all, but I don't have the mental or physical energy for that right now.

Anna started with a bit of a cough on Wednesday, but we didn't think anything of it.  With the weather changing, we figured that she just had a bit of drainage.  The cough got worse on Thursday and Friday, but still wasn't anything too bad.  Then around dinnertime the fever started.  We aren't supposed to give Anna Tylenol until we know how high a fever is going to be.  The concern is that she could have a blood infection caused by her port and giving her a fever reducer would mask the severity of the situation.

At about 7 p.m. her temperature was 100.2; the threshold is 100.4  We called the hem/onc doctor on-call for advice.  The doctor said he'd like us to check it again in about a half hour to see if it was still going up.  If so, a trip to the ER for blood tests and preventative antibiotics would be necessary.  Anna really just wanted to go to bed.

At 7:30, her fever was up to 100.6 so in we went.  To say that our ER experience this time around was less that ideal would be an understatement.  Granted, Anna's case was not as much of an emergency as others, but I felt things could have been handled a little better.

Anna was able to doze for about a half hour between 9:45 and 10:15 on the exam table in the room (our room didn't have an actual bed) before being woken up for her run of antibiotics through her port, and a trip to have a chest x-ray.  Sometime after 11, I went in search of information since we had not been told much of anything.  It was at that point that I was informed Anna would probably be admitted to the hospital.  Not the news I wanted to hear.

Round about midnight, we learned that her chest x-ray was clear for pneumonia, but her nasal swab tested positive for RSV.  My only experience up until this point with RSV has been through friends whose babies had the virus years ago.  When the resident brought me the news, I advocated majorly for Anna to come home.  We have had enough medical exposure in the last 14 months to know how to take care of our daughter at home.  In fact, Anna would probably have more opportunity to rest and sleep at home than in the hospital.   I will admit that most of our experience has not been respiratory in nature, but I told both the resident and the doctor that we would call with any questions or if it seemed like Anna was having difficulty breathing.

Apparently the hem/onc on-call doctor was called about this time for his opinion.  He also advocated for Anna to go home.  RSV is best treated at home for older kids.

Anna was finally discharged around 1 a.m.

Saturday morning in our family started about 6:30 a.m.

Anna's cough has continued, sometimes it would be considered severe.  Her fever came back on Saturday evening so we called the hem/onc on-call doctor, again.  Since she tested positive for RSV already, and her blood cultures were still negative, there is no need to go back in to the hospital and we are allowed to give her fever reducers.

Saturday night was rough.  Anna was having a bad enough coughing fit at one point that we took her into the bathroom with the hot shower running to help her calm her breathing.

Sunday morning in our family started around 6 a.m.

We're tired.

To complicate matters further, Anna has needed multiple days of stress dosing.  We usually follow the "24 hours of stress dosing guideline" and then Anna is fine, but Sunday mid-morning she was not doing well.  We learned after talking to the hem/onc doctor, yet again, that for a severe illness like RSV, stress dosing like this is not uncommon.

Side note, I'm very thankful that we have a good relationship with all of the hem/onc doctors.  This weekend's on-call physician, in particular, was very helpful and kind, especially with all of the calls we have made.

RSV is a nasty, nasty virus.  Young babies, especially, are at high risk of complications because their breathing passages and lungs are not yet big enough to deal with all of the gunk that is dumped into their lungs from the virus.

Anna's experience with it, thus far, has not been as scary as it would be for a little child.  However, it's not fun for anyone.  Adrenal insufficiency, difficulty swallowing, decreased lung capacity/breath support, sensitive gag reflex, to name a few reasons why.  But Anna is safe here at home and we feel comfortable treating her symptoms, even if the last few days have represented yet another learning curve for our family.

RSV is also very contagious.  So far no one else has shown symptoms, but it's still early.

Survivorship

In the last post I said that we are not yet ready to claim cancer survivorship for Anna.  However, that doesn't mean we shouldn't learn about and prepare for what survivorship might mean.

In general, being a survivor of childhood cancer carries its own unique set of challenges.

I have two main sources of information for this post, besides our personal experience.  Most of my information comes from a book given to us by the Badger Childhood Cancer Network titled Educating the Child with Cancer.  This particular resource was extremely interesting and informational, both as a parent and as a teacher.  The good news from it is that we (our family, the school district, everyone else involved) has been doing a lot of things right for Anna in terms of her educational, social, and emotional well-being in the last year or so.  The bad news is that Anna, along with any other child who has gone through cancer treatments, is at risk for a whole host of problems.

My second source of information for this post on survivorship is the distance learning course that I began in January of 2014 and finished recently; the course was titled The Adolescent Brain.  Pretty good timing for that particular course, huh?  The class was also interesting and informational, both as a teacher, but even as the parent of someone who had brain cancer.  Through the class I was reminded that the human body, and the brain in particular, is complicated and mysterious.  If I hadn't believed in a Divine Creator before all of this happened, I would now.  Our bodies are certainly wonderfully and fearfully made.  But even with all of the advances in technology and science in recent years, so much is still unknown about how the body, and the brain, functions.

Now on to the topic at hand.


In putting the idea of survivorship in an understandable and meaningful way, I have two mental images that have worked for me.

The first has to do with putting out fires.  Imagine a kitchen fire in an apartment building.  If you want to save the building, you have to put out the fire.  But in the process of putting out the fire, the building is damaged.  Maybe axes were used to break down doors, or maybe the overspray of water caused damage in neighboring apartments.  Either way, once the fire is out, the building still has damage that needs to be dealt with.

My second image comes from an 80s commercial.  In it you see a plain egg in its shell and then the egg broken and in the frying pan.  The narrator says "This is your brain.  This is your brain on drugs.  Any questions?"  As parents, most of us know how sensitive our young children's bodies may be to different drugs.  We limit our kids' exposure to many medications, if possible, because we don't want to hinder their development in any way, be it physical, emotional, intellectual, or spiritual.

With that said, chemotherapy drugs are very effective on pediatric cancers.  Unfortunately, though, chemotherapy drugs are toxic drugs.  And they are often given at very high doses.  Radiation is even more effective, in part because it is more toxic and damaging.  And it can also be given at very high doses, especially for treatment of brain cancer and acute lymphoblastic leukemia (ALL), the most common type of leukemia.  The potential long-term side effects of pediatric cancer treatments are only now being studied in depth because, in all honesty, kids with cancer more than 30 years ago didn't have very high chances of survival.  Only now are many of these kids reaching adulthood.

Below is an information graphic regarding the long-term outcomes of childhood cancer patients.

People who have been treated for childhood cancer are followed closely for most of their lives in regards to the potential late effects of treatment.  These individuals are at risk for many complications, physical, social, emotional, and cognitive.  Some may not have any problems, others may have many.  Only time will tell.

Some of the possible late physical effects from treatment are strokes, seizures, general fatigue, muscle weakness, problems with coordination or pain/changes to other nerves outside the central nervous system.  Organs or organ systems that could be effected are vision, hearing, reproductive organs, the heart, the lungs, the kidneys, the bladder, the intestines, the spleen, the immune system, the thyroid and neuroendocrine system, and bone/body composition.  In addition, all children treated for cancer are at risk of developing secondary cancers.

Children who are treated for cancer, especially those treated with radiation to the brain, are also at risk for "cognitive late effects", which are defined as problems with thinking, learning, and remembering.

This is the legacy of treatment.

We were warned of all of these potential side effects when signing the consent-to-treat papers last year in February, but whenever we asked for specifics, no one could give us any answers ... because no one knew what the answers might be for Anna.  Just as each kid is different and each cancer experience is unique, the late effects are variable as well.  And, realistically, most parents are not going to deny their child treatment with the knowledge that he/she may have some lasting effects from the treatment.

So what does this all mean for Anna?  Good question.  Muscle weakness and problems with coordination are the first obvious side-effect from her treatments.  So far her organs and organ systems are doing okay, but often times those effects don't surface for years.  We already know her thyroid was damaged, but we don't know yet about other parts of her neuroendocrine system.

Without having had Anna go through specific neurological tests, we cannot say for certain where her cognitive difficulties lie.  However, knowing Anna like we do, we are pretty sure that her processing time, short-term memory, expressive language (putting her thoughts into words), and visual-spacial skills were all affected by the radiation.  These are all different from what they were in her before cancer.  Like I have said before, she is still a smart kid and very capable of learning.  However, she is definitely different from before cancer and she is going to continue to encounter all sorts of challenges because of her treatments that she would not have experienced otherwise.

But ... in all of the doom and gloom of my reading in the past few months, I have several hopeful ideas that shine through very brightly.

The first relates to Anna's "baseline" health and intelligence.  I used to cringe at the term "baseline" (or new baseline) when it was used in the hospital because it brought to mind all of the ways in which Anna had changed; now I understand better why it is used.  Prior to cancer, Anna was a very healthy and intelligent six year old.  Knocking her down a few notches in terms of her overall health and cognition would not be as tough to deal with as it might be for someone whose baseline health and cognition weren't as high.

The second deals with the maturation of the brain.  A person's brain is not fully mature until sometime in their twenties.  Most of our prime learning happens while we are young.  Given the right stimuli and environment, a child's brain has amazing potential.  At this point, no one on earth knows Anna's potential (or that of any other kid).  But even after our brains mature, we can still learn new things.  (How much have we learned in the last year alone?!?!) 

The third is the idea of neuroplasticity.  We can master different physical tasks throughout our lives, such as learning to play an instrument or learning to ski.  Adults can learn new skills, in spite of the saying "You can't teach an old dog new tricks."  However, these skills are more easily learned when we are young because our brains are still naturally forming many connections.  Anna is at a prime time for relearning many of the skills her body lost due to her treatments.

Another reason to be hopeful is that we recognize how much we don't yet know and we aren't afraid to ask questions and seek out more information.  Anna already has a wonderful, knowledgeable support system around her to help her make gains every day, but we will continue to learn more about how we can best help Anna.

Recently, my mom reminded me of another reason to be hopeful.  She said, "Awareness is half the battle."  Now that we can identify some of Anna's strengths and weaknesses (physical, mental, emotional), we can work to help her improve in those specific areas of weakness.  We plan on having Anna undergo some neurophsycological testing in the near future to help us understand more about her unique challenges.  Some of Anna's therapists have already provided us with effective strategies and techniques to help her.  The more we know, the more we can alter our household routines to help Anna (and the rest of our kids) make improvements with their whole bodies as well as their "core cognitive processes" (thinking, learning, and remembering).  It's actually pretty easy to incorporate certain activities and strategies into our daily lives, once we know what they are.

My final hopeful idea is actually an excerpt from the book about educating a child with cancer.

"Many research studies have recognized considerable differences in cognitive performance even among patients who were diagnosed at the same age, are the same gender and who received the same treatment for the same type of cancer.  One possible explanation is that the home, school, and community environments of some children allow them to compensate for core deficits and thus improve their performance and achievement in school."

Well, that give me additional motivation for continuing to push forward.  We will do whatever we can to help Anna compensate for whatever effects she experienced from her treatment and advocate as much as necessary to help her reach her highest potential.

Without treatments, Anna would no longer be with us.  However, her treatments caused damage and now we are learning to deal with the changes.