Sad holiday

Easter is not supposed to be a sad day.  And for most people, it isn't.  But for us, it is, because it reminds us of the life we used to have and the life we will not have again for awhile.  Now I better understand why holidays can be hard for those experiencing grief.

Anna was without mom or dad from Friday evening until Sunday after church.  Her primary nurse in the PICU was working on Friday, Saturday, and Sunday; her night nurse was going to be consistent; and my parents agreed to spend all day Saturday and Sunday morning at the hospital to give Matt and I some respite.

We (Matt, Kate, Ethan, and I) were thankful to be able to spend an entire day together on Saturday, but we also missed Anna ... sometimes a lot.  Since the weather was pretty nice, we spent part of the day outside in our yard after Matt and I sorted through the paperwork that has been piling up.  But Kate was lonely; she misses Anna.

For those of you who don't know our family very well, our daughters have always been very close.  They genuinely like each other and play together very well.  Ever since Anna started kindergarten last year, Saturday mornings were a special time for the siblings.  They often chose to stay home and play together instead of going and doing something with me on Saturdays.  Yesterday afternoon Kate was lonely, and sad.  She misses Anna.  She and I took the opportunity to be sad together for awhile, and then we went and planted some radishes, spinach, lettuce, and a few flowers for good measure.  But seeing how this is all affecting Kate is really hard for us as her parents.

When Ethan woke up from his nap, we took the two kiddos to the zoo.  Both kids enjoyed the outing, but it was challenging for me.  Seeing all of those people, with happy kids who were willing and able to go to the zoo on a nice Saturday, made me sad.  It also reminded me of how many families are out there who never, ever have to deal with childhood cancer.  I was mad all over again.  Anna was probably one of the healthiest 6-year-olds I know, also one of the sweetest and most caring, and pretty bright, too.  Why did this have to happen to her?

On a side note, there is no known cause for medulloblastoma.  One little cell has a random mutation and starts dividing uncontrollably.  That's it.  There are no carcinogens (food, environmental, genetic, etc.) that cause it.  Aside from standing in an x-ray machine for several days straight, it just happens without cause.  Not very often, but it does.

Easter morning was hard.  Anna loved Easter, and I hope still does.  Last year during the Easter service at church she wrote in her notebook "Allelulia!  Christ is risen!  He is risen indeed!  Allelulia!"  I missed our Lenten and Easter traditions, none of which we have done this year.  In years past we did devotions every morning during Lent; this year my dad even made us a candle holder to help us count down the days to Easter (we haven't used it once).  We don't "do" the Easter bunny in our house, or Easter baskets.  For a few years, we did "Spring Baskets" to surprise the girls when they got back from a trip to Grandpa and Grandma's.  This way we figured we could focus more on Jesus' resurrection on Easter.  It worked really well last year; Anna loved Easter morning, and there weren't even any present to open.  I miss that.

And then Ethan wasn't cooperating during worship this morning.  We have made the decision with all of our kids to keep them in church as much as possible, avoiding taking them to the nursery if we can.  We like to teach our babies and toddlers the rhythm of worship when they are young.  But the last few months have been hard with Ethan.  Our attention and energies have been focused elsewhere.  It was hard to keep him with us this morning, but we made it through (or at least until communion).

But then we had a really, really crabby boy on our hands as I was saying good-bye.  And then Kate was sad, too.  She's old enough to know to ask "When will I see you again, Mommy?"  Tuesday morning is a long way from Sunday morning, especially for an almost five year old.  Ethan isn't old enough to ask that question; he is often surprised by which adult is home when he wakes up.

So our holiday has been sad.

But things are still improving for Anna.  The doctors on the PICU are impressed by how awake she is each time she sees them.  She is still not back to where she was prior to the shunt infection, but she has only been recovering from PRES for a week.  Hopefully there are still more improvements to come.

Her drain was officially clamped to see how her body handles the cerebrospinal fluid.  The doctors have been pleased so far with how she has tolerated the fluid.

However, her blood pressures are still not where they should be.  Her meds were adjusted yesterday to continue to deal with that.  Also, she has been nauseous at least once a day for the last several days.  Anna's nurse and I are wondering if it is more related to some of her oral medications, instead of something going on in her brain (which is what it has always been related to before).  We'll see.

As for any plans for going home, the main two obstacles are Anna's EVD and her strength/stamina.  No one is completely sure about how long she will need to tolerate having her drain clamped before the EVD can be removed and the shunt replaced, if necessary.  Several days are needed, at the very least.  As of today, Anna would not be strong enough to pass any car seat test; she could only handle about 20 minutes sitting in the wheelchair in a very reclined position.  She knows that her job this week is to be strong enough to ride in the car seat all the way home, and to try different foods each day.  Hopefully, by the time of Anna's next surgery, she will be strong enough to come home.  We know life will be very different from any life we have had, but at least we will be together.

Time for prayers

Thanksgiving
Please give thanks for the time the rest of us were able to spend together over the weekend.
Please thank God for consistency with Anna's care staff.
Please give thanks for safe travels for my parents.
Please thank God for spring.
Please give thanks for the promise and hope that comes with Jesus' resurrection.

Requests
Please pray that Anna's treatments are 100% effective.
Please ask God to make it clear as to whether or not Anna needs a brain shunt.
Please pray that Anna's tummy settles, especially as more of the antibioitics are removed from her regimen tomorrow.
Please continue to pray for peace, strength, wisdom, and rest for our family.
Please pray that Anna's whole system settles out a bit after all of its disruptions recently.

Allelulia!  The Lord is risen!  He is risen indeed!  Allelulia!