Moving forward

Anna caught the cold.  Saturday and Sunday were pretty rough days in our home, especially since the quality of sleep on Saturday night was very, very poor for everyone in the family.  By Monday afternoon, it was obvious that Anna needed steroid stress dosing for this particular cold.  I'd forgotten how much of a difference there is in Anna when she has the proper steroid dose; it's like night and day, even in the midst of a cold.

As a family, we seem to be better at dealing with colds now than we were in December, and it was easier in December than it was in October.  October may have even been a little easier than the August cold, but my memory gets a bit fuzzy when I try to think back that far.  Hopefully things will continue to improve, and hopefully we don't get another virus for quite awhile.

So far so good for Anna's therapy transition.  Her OT time on Monday was a little clouded by the fact that she was experiencing steroid insufficiency, but she powered through.  Tuesday she had a full day at school, which included a few extra activities in place of her rest time.  Wednesday morning's therapy was good.  I could see that Anna was experiencing fatigue, but she kept plugging along and pushing herself, especially if it meant she was having fun.  She even seemed to have a bit of an "exercising high" towards the end.  On the ride over to school, she was still chipper and energized for school; she gets to use the thinking part of her brain for most of her time at school, instead of the physical part.

Plans are currently in place for Ethan to spend one morning a week at a friend's house, instead of going to therapy three mornings a week with Anna and me.  There are plenty of activities for him to do at the facility, but we think it's healthy for him to get to spend some time with friends his age, too.  This boy is certainly going to have a different perspective about the world around him when he enters school in a few years.  He's already seen more kids in wheelchairs and with walkers, all with different reasons for their challenges, than I think many people see before they enter adulthood.  I wonder what he will be like when he gets older ...

I have been struggling lately with the idea of awareness.  What does it mean to be aware of childhood cancer, or any cancer for that matter?  What advantages are there to having awareness about a certain disease, condition, or illness?  Why do my feathers get ruffled by seemingly silly programs or activities that are advertised to "increase awareness" or "bring awareness"?  Just because someone who is promoting awareness does not fully understand what we've gone through doesn't make it wrong or bad, but it can be frustrating.

I think I've come to a better place about this all recently.  I've decided to think of awareness as a relative concept with many levels, instead of a black/white or either/or idea.  Instead of being either aware or unaware of pediatric cancer (for instance), you may have a different level of awareness about it.

For example, someone may not even know that kids can have cancer (unaware).  Or they may have heard about it, but know nothing beyond the name of the disease (very similar to unaware).

Then there are people who have a basic idea of cancer, but not know how it relates to kids specifically (about where we were a year ago).  Continuing on the spectrum, someone may know a bit more about childhood cancer based on the experiences of someone they know (perhaps you fall into this category?).  Then there are those who know even more because they are more intimately connected with a family experiencing cancer.

Next come those unfortunate families who are living with cancer.  Even though that's where we are now, within this level there are many different layers to awareness.  We learn more and more every step of the way.  And the more we learn, the more I realize we don't know.  With just about every aspect of life, I now realize that I can only see/understand the tip of the iceberg.  Realizing how much I don't know, about different topics or different people I meet, puts me in my place and keeps me humble. 

Beyond our level of awareness are many more.  There are those individuals who are further along in their cancer journey, in addition to medical professionals who have gone to school specifically to learn about hematology and oncology, and those who are even considered experts in their field of study.

So I've decided to reframe in my mind the idea of "raising awareness".  Raising awareness means simply that, taking someone's understanding from one level and moving it to the next.  It doesn't matter where someone starts, awareness helps them move forward in their understanding.

And what is the point of increasing awareness?  Increased awareness promoted better understanding, encourages empathy, prevents misunderstandings (which could lead to more pain and suffering, either physical or mental), and allows people to find appropriate ways to support and assist those in need.  Basically, better awareness helps those who are suffering because they no longer have to fight the battle alone, nor do they have to fight as many battles all at one.

I'm sure others have already figured all of this out, but it was healthy for me to process it on my own to develop a better frame of mind.  Also, it gives me the continuing motivation to "raise awareness" about pediatric cancer, all aspects of it.

Time for Prayers

Thanksgiving
Please give thanks for the successful transition, thus far, to Anna's out-patient therapies.
Please thank God that this cold required no visits to a doctor's office or hospitalizations.
Please give thanks for our ability to recognize our lack of knowledge and the desire to seek out those who know more.
Please thank God for the continued wisdom, patience, peace, and strength we have, even through our colds and in the midst of our sleep deprivation.
Please give thanks for all of the past experiences we had requiring stress dosing, so we knew what signs to watch for this time around.
Please thank God for all of Anna's therapists and teachers, for their wisdom, knowledge, and compassion.

Requests
Please pray that we start getting better sleep here at the Mischnick House; life is a bit brighter with decent sleep.
Please ask God to quickly grant full healing to those in the family who still have cold symptoms.
Please pray that God heals those around us who have also been experiencing colds/flu this season.
Please ask God to continue to increase Anna's strength, coordination, and stamina (both physical and mental).
Please continue to pray for wisdom, strength, peace, and patience for us.
Please continue to pray that Anna's treatments were 100% effective.
Here's a shoot for the moon one ... please pray that Anna begins eating orally soon.  Colds are extra bad for someone who has extreme difficulty swallowing, and they cause set-backs in the whole process.

Thanks, as always, for your continued support and prayers.