Removing the layers

Anna's case is a complicated one; we were told that in the hospital several times.  Many of the layers have been removed in the past two months.

Layer #1 removed ... PRES ... that cleared up in a few weeks with no lingering effects besides the deconditioning of having slept for about a week.

Layer #2 removed ... shunt infection ... that also cleared up in a few weeks.  The lingering effects of that were related to having a 103+ fever for more than a week; her muscles were really, really tight from being curled up in the fetal position for a week.  However, a positive lingering effect is that she still does not need a shunt.  From a neurosurgery standpoint, Anna "got lucky" in this regard.

Layer #3 is being removed ... short term radiation side effects ... these are continuing to clear up.  Many of them have already passed, but some of them will take a few more weeks and/or months.  For example, Anna still tells us that her spit tastes gross, thus she does not eat anything orally yet.  Her speech therapist at the hospital says this is a common complaint of those who have undergone similar kinds of radiation therapy and will take awhile to heal.

That leaves Anna with the continued chemotherapy and medulloblastoma.  The effects of the chemotherapy drugs wax and wane, but will continue to take their toll on Anna's body until she is done with her treatments, hopefully in December, but possibly January.

However, as every "after office visit summary" reminds us, Anna's primary diagnosis is medulloblastoma.  Everything that is wrong ultimately points back to this disease.  I'm trying to learn more about the disease itself, but so far my research is only giving me the basic information.  In the next few weeks, I'm hoping to dig deeper and get more details so that I can gain a better understanding.  At this point, though, I'll share what I know.

When Anna was initially diagnosed, her medullablastoma was already considered in the high risk category, meaning it had already spread outside of the initial tumor.  In fact, it had spread to many other parts of her brain and spinal cord.  Then it continued to grow and spread for three weeks before her treatments began.  Basically, at the end of February she had a lot of disease throughout her entire central nervous system.

Her treatments have eliminated much of the cancer cells, but the disease has left its mark.  From my understanding, the neurological pathways still exist throughout Anna's central nervous system, both from her brain to her body and within her brain.  However, the disease affected those pathways making it hard for the messages to get sent, at least until the treatments began.

Once the cancer cells began to die, the messages could again get sent, but it took a lot of work, at least at first, for Anna's system to send messages throughout her central nervous system.  I liken it to the stages of a newborn's development, though not necessarily as extreme.  First the basic sensory systems need to get acclimated, then motor systems, cognitive, social, etc.

As a specific example, Anna had an ophthalmology appointment the other week.  We learned that her eyes are perfectly healthy.  However, her vision is not quite right because of the disease.  First, she sees double because one of the muscles that pulls her left eye straight is still weak; this should correct itself in the next 3-6 months.  Second, when Anna gets tired or tries to strain her eyes by looking at the edge of her field of vision, her vision gets blurry because her eyes literally get fatigued and can't focus anymore.  They haven't yet relearned how to handle this skill.  Her vision is much, much better in this regard than it was back in March, but it may take months or years for it to be corrected completely.

The main difference between Anna and a newborn, however, is that with Anna all of the learning has already taken place; her brain and body just needs to be reminded and get stronger.  As with any learning and strengthening, the more it is practiced, the faster a skill becomes.  And much of the basics already happened in the hospital.  But the effort required on Anna's body's part is fatiguing.  Not tiring, but fatiguing, literally.  Anything that her brain has not encountered since her treatments began, whether it's physical, emotional, cognitive, or social, seems to drain her more quickly than it would someone else her age.  She takes a nap, every day, and she needs to.

But she's still a smart cookie.  After we learned that there's nothing wrong with her eyes, I pulled out the books and we started reading again.  Granted, she had four months off of reading and definitely took a backslide in those skills.  But we'll work on that.  She's working through her math book from the second half of the school year, and she loves it.  Hopefully she'll be able to get through that before she begins second grade in the fall.  I taught her the game SkipBo the other day and she picked up on the rules in about 5 minutes.

So what does this all mean for Anna?  Well, gone are the days when we could take family trips up to Devil's Lake and hike the West Bluff Trail with Anna only getting tired for the last 10 minutes.  (Actually, gone are the days when we could take a family field trip to Devil's Lake at all right now; logistically, it just wouldn't work.)  Gone are the days when we would go sledding as a family and she would be the one running up the hill again and again while her sister sat at the bottom because she was too tired.  And gone are the days when Anna would be one of the top kids academically in her class because she probably won't be able to handle full days of school for awhile.

Although we believe that Anna will walk again, she just may not have the kind of strength and stamina required for the rest of the activities, at least not for a long time.  She's still capable of learning and she still loves to learn, but since she tires more quickly than most kids, she can't spend as much time learning new information as another kid her age.

We are told that as Anna's body heals her strength and stamina will increase, but no ones knows to what degree or how long it will take.  In fact, no one will have any kind of clue until her treatments are completely over.

Do we ever feel sad about this?  Of course.  Are we ever mad?  You bet.  Do we ever long for our days of past years?  Well, I'd be lying if I said we didn't.  But we try not to dwell on those feelings.

In the end, the limitations don't matter.  When Matt and I thought that we were saying good-bye to Anna here on Earth and sending her to be with Jesus, what made us most sad was not that we wouldn't see her again until Heaven.  What made us most sad was that Kate and Ethan would be losing time to make memories with their big sister.  It broke our hearts that Kate wouldn't have Anna around anymore to be her friend and role model and that Ethan wouldn't be old enough to have any memories of Anna.

For now, at least, Ethan and Kate have the opportunity to have Anna with them every single day.  They are blessed to have one of the best big sisters that any kid could have.  Whatever Anna's abilities may be, Kate and Ethan are better people to have her in their lives.

Time for prayers

Thanksgiving
Please give thanks for a few quiet days at home in preparation for a crazy week.
Please thank God for the continued help and support our family is receiving.
Please give thanks for a day with some sunshine today after a whole week of clouds and rain.
Please thank God for Anna's upcoming 7th birthday.
Please give thanks for 12 years of marriage that Matt and I are celebrating today.

Requests
Please ask God to be with Anna as she experiences her second round of chemotherapy, physically, spiritually, and emotionally.
Please pray for all of Anna's care providers in the coming week.
Please pray for strength and wisdom in the coming week as we balance life in and out of the hospital for a few days again.
Please pray for Kate and Ethan as they will have different care givers again; our helper had a previous commitment this coming week.

On a final note, when Matt and I were married twelve years ago, only God knew what was in store for us in our marriage.  Looking ahead, only God knows what the rest of our journey will bring.  However, Matt and I have said multiple times that although neither one of us wants to be on this ride, we would rather be on it together than with anyone else; we work pretty well as a team :)