The past, the present, and the future

The past
 The P4 Unit at the hospital has 20 or so rooms and Anna has been in many, but not all, of them.  A few of these rooms have some pretty powerful memories for our family.  For example, room 11 is the very first room she was in at the hospital.  She was only there for about 40 minutes; it's where we first met one of her primary nurses and the neurosurgeon.  Room 19 is where she moved when she was first released from the PICU.  She was there for 4 days.  It's where we met her other two primary nurses and then where things deteriorated for her before anyone realized how fast her tumor was growing/cancer was spreading.  Room 29 is where she spent the most time back in March and April, but it's also where her shunt infection presented itself.

Anna has been back in each one of these rooms since those days and we are making some different, better memories with each hospital stay.  I am amazed, however, at how each of her nurses remembers the powerful moments almost as much as we do.  After spending as much time on the unit as we have, we realize that those kinds of events do not occur every day and they were memory makers even for the staff.

The present
Anna's hospital stay this time around was relatively uneventful.  The P4 staff and I work together very well by this point to get done what needs to get done in a safe and effective manner.  Our goal this time was for Anna to be discharged by rushhour on Wednesday; it worked.  In the time I was there with Anna, I was able to touch base with many of the hospital personnel with whom we worked during Anna's long stay about a variety of matters; I had to wear different hats than what I am used to wearing here at home.

While at the hospital, I met another family whose daughter was recently diagnosed with a different kind of childhood cancer.  In speaking with the mom, she asked me "Aren't you afraid of the chemo?"  I looked at Anna and asked her the same question.  Her response was "No!  I love my chemo visits!"

True, she looks forward to them, almost to a fault.  She woke up at 4:30 a.m. on Tuesday morning and couldn't go back to sleep.  Her nap at the hospital on Tuesday was short; she didn't sleep much on Tuesday night and Wednesday's nap was pretty intermittent.  By Wednesday afternoon she was tired, emotional, and complaining of a headache.  If only I could deal with these behaviors as the parent of a normally healthy 7-year-old, but instead I worry about things like stress-dosing, or hydrocephalus (needing a shunt).  So her nurse and I got her some Tylenol, and by the time Anna was home, she was feeling much better.  But still ...

So what was my answer to this other mom?  Am I afraid of Anna's chemo?  No, not anymore.  I told her I was more afraid of the surgeries.  (Her daughter had just had surgery.  Not brain surgery, but still major surgery.)  The surgeons tell you that kids are resillient and recover from surgery, but they are not the ones who are dealing with a patient hour by hour, day by day for weeks, months, even years, as the child recovers.  Your child goes in one day seemingly normal for a surgery and comes out the next a completely different person.

Like Anna, I'm not afraid of the chemotherapy visits.  Anna doesn't throw up with her chemotherapy; the anti-nausea medications are just as powerful as the chemotherapy drugs.  When and if she vomits, it's for other reasons.  Besides, she's gained weight since she was discharged from the hospital, and she's gotten lots stronger.  The chemo itself doesn't mess with her too much, at least not that we can visibly see.  This time around our family, Anna included, was fighting a mild cold virus and Anna was still cleared to receive her chemo.  We don't do too much differently in terms of basic hygiene and cleaning than we did before Anna's chemo began.  In fact, we probably do less cleaning because we have less time and energy, although we wash our hands with soap and water more often.

What we are afraid of is the neutropenic stage, because we have no control over what happens during that particular time.  Those 24-48 hours (in Anna's case, other kids are different) are scary, but there is nothing we can do to prevent the microscopic bacteria that are already in and around Anna's body from doing the damage.  In fact, the "bugs" may already be there waiting for just the right time.

However, we know when the time comes (day 8-10 of chemo cycle); we know what to watch for (fever); we know who to call (not ghostbusters); and we know the doctors have lots of tools in their toolbox (antibiotics) to help kids on chemo get through that time.  Plus, God is on our side.  He's seen Anna, and us, through a lot worse.  We just hope she can make it through another round or two (or three or four) of the neutropenic stage without developing a fever; life is just a bit easier for us all, especially Anna, that way.

The Future
We try not to worry too much about the future, but I'm a planner so I have to plan some.  I try to focus on the current day, but also look towards the week, then if I have the time and energy, look ahead to the coming month and maybe, just maybe, look a little further than that.

A few weeks ago I thought about September and the coming school year and just about panicked.  (Leah will be student teaching in the fall so there is a big sad face on our calendar on August 22, her last day.)  But I'm not panicking anymore.  Things seem to be falling into place.  Of course they would; God is on our side. 

All of the powers that be at the hospital, the home health agency, the school, and the insurance company, seem to agree that Anna can go to school in the mornings, come home to take a nap, and then receive her home health therapies in the afternoon, at least while she is continuing to attend school "intermittently" (a.k.a. receiving treatments).  Once her treatments end sometime in October or November (or December, depending on how it all goes), things will change.  Of course, her attendance at school is dependent upon her not being in-patient at the hospital and not having one of her many doctors appointments.

Kate will be in full day kindergarten starting after Labor Day; it will be a transition, but we know she will thrive once she adjusts.

On Wednesday, Ethan and Kate spent the day with a family in McFarland who has agreed to watch them as needed (on chemo days, transfusion days, in-patient stays, etc.)  Kate LOVES spending time with her preschool buddy and his family, and it sounds like Ethan did well with his first long day at their home.

Still, we have to get through tomorrow, and then this next week's neutropenic/low blood counts time, and then the month of August, and then the transitions of September, and then the rest of 2014, and then we'll see what next year holds.

Time for prayers

Thanksgiving
Please thank God that this round of chemotherapy's hospital stay went much, much more smoothly than last time.
Please give thanks that Kate and Ethan's first full day at our family friend's home was successful.
Please thank God that, even though Anna's chemo treatment coincided with a busy time at work for Matt, the design review he led yesterday went very well.
Please continue to give thanks for all of the support our family is receiving, both professionally and beyond.
Please continue to give thanks for the amazingly cheerful and grateful spirit that Anna has each day.

Requests
Please pray that this cold we have going through passes completely before Anna's counts drop next week.
Please pray that Anna makes it through her neutropenic stage with no fever this time.
Please ask God to continue to bless our family with the amazing support we are receiving.
Please pray that God will bless the family we met at the hospital with a similar kind of support.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all those who are working with and for our family.

Thanks, as always, for everything.