D is for Doll

After seven days inpatient, we are finally heading home later today.  Day one was the central line.  Days two through six were chemo, which she actually handled really well.  And today she’ll get a shot that will boost white blood cell production.  It’s a shot that she will always receive 24 hours after her last dose of chemo.

They have arranged for a home health care company to take over her weekly line maintenance once we get home.  They will come in twice a week for labs and will change the antibiotic dressing around it.  We have been trained in daily maintenance and emergency care.  They delivered all the supplies yesterday to our home.

Before we found out about this nightmare we had just started talking about the ALPHABET at night.  She wanted to be able to recognize all her letters before preschool so each night we would lay in bed and look through the flash cards sequentially.  I’d leave the one’s we had gone through out on her dresser in one pile and the ones we still needed to learn in the box.  I told her by the time preschool started we would have gone through the whole box.  We had only made it to the 4th card.  D is for Doll.

Now in place of those cards on the dresser will be tubs of alcohol wipes, latex gloves and a locked box to dispose of syringes.  But I guess there’s no rush with the letters, there won’t be time for preschool in the fall anyway.  And days we are in town her immune system will probably be too low to go into a classroom.

Staying here this week has brought about a whole new array of unexpected feelings.  I like it here.  First of all, I am surrounded by parents experiencing the same thing that I am.  Their children have some type of cancer or blood disease too.  We walk past one another and exchange a small smile that says “I understand, I just want this to all go away too.”

On top of that, I feel like we’re doing something while we’re here.  Well actually, I know we’re doing something while we’re here.  She’s receiving treatment.  She’s under constant watch.  There’s never any question about what’s happening in her body.  They always know.  We are actively doing something to fight the cancer every single day that we’re here. I’m afraid going home will be so hard.  The hardest part about those first 2 weeks after diagnosis wasn’t knowing, we’ve been down that road before.  The hardest part of those first two weeks was not doing anything.  I shaved my head less than 30 minutes after I found out it was Stage 4 because I wanted to take action.  (And I’m quite certain every piece of hair that fell to the floor had impact..somewhere).  🙂  But to know that the doctors couldn’t do anything until the next week was breathtaking.

It will be two weeks until we are here receiving treatment again.  Her body needs that long to recover from this round.  But the challenge for me will be to remember that just because the doctor’s aren’t doing anything doesn’t mean I can’t do anything.  I’m not paralyzed from continuing to petition at the gates of heaven for her healing.  God is still God whether we’re in the hospital or at home.  And while He can and does work in conjunction with modern medicine He can also continue working alone from it.  So while we’re home waiting for her body to heal from this round of chemo, I will make every effort to choose not to feel like there’s nothing I can do.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.”  2 Corinthians 4:16

She is being renewed day by day, by Jesus.  I am being renewed day by day too.  And when the waiting seems unbearable I remember a passage I read from Jesus Calling the day before we found out it was Stage 4:

“Rest with Me a while.  You have journeyed up a steep, rugged path in recent days.  The way ahead is shrouded in uncertainty.  Look neither behind you nor before you.  Instead, focus your attention on Me, your constant Companion.  Trust that I will equip you fully for whatever awaits you on your journey.  I designed time to be a protection for you.  You couldn’t bear to see all your life at once.  Though I am unlimited by time, it is in the present moment that I meet you.  Refresh yourself in My company, breathing deep draughts of My Presence.  The highest level of trust is to enjoy Me moment by moment.  I am with you, watching over you wherever you go.”