A Clinic Visit: From the Mom's Perspective

Phoenix is a 9 year-old fighter of relapsed preB PH+ ALL who had a stem cell transplant from an unrelated donor on Feb. 18, 2015.

A clinic visit on Day +174

From an outsider’s perspective, a trip to the stem cell clinic may appear to be a routine visit to the doc.  For me, the mom, it is an emotionally and physically exhausting event.

The whole ordeal really begins the night before the trip.  It is hard for me to sleep the night before. My brain knows we have to get up at the crack of dawn and I don’t want to sleep through the alarm. I don’t want to forget anything: medicines, numbing cream, syringes, pillow, blanket, iPad, iPod, water, snack, phone, purse, coffee, Bear & Pinkie.   I’m thinking about how I really don’t want to go, and I also really want to go.  I try to ignore the worry of what could happen and think positively.  But then I do some worrying.

The alarm goes off at 5am for the showering and coffeeing.  Our drive is long.  Nearly 3 hours long, so I have plenty of time to think about so many things.  I think about how much it sucks for my little sweetie to have to make this haul. I look at her in the rearview mirror and cannot believe she is 4 ½ feet long and 80lbs… because it seems like yesterday that I was looking in the same mirror at a little 3 foot-long, 40lb, 5 year-old in a car seat.  We’ve been doing this for nearly four years.  Jesus.  I remember random snippets of hospital stays over the years.  I pause to think about the amazing doctors that we have had the honor of knowing.  Eventually I reflect on the reason for today’s visit.  Today it is to check blood counts.  I get in my prayer zone and talk to God for a bit.  Inevitably something on the radio makes me cry. 

When we arrive at the hospital we hurry to the lab to get the blood drawn.  I pray they get a good vein on the first try…and they almost always do.  Phoenix doesn’t even flinch anymore and always tells the phlebotomist on duty how she has done this “a million times.”  From there we hurry to the clinic to check-in and wait.  The waiting room usually has a few families hanging around.  I overhear chatter that slashes my heart and upsets my stomach.  Somebody just had a third transplant. Somebody is back to start treatment all over again. Somebody is here for round 5 of chemo. Somebody is a brand new patient.  All of these “somebodies” are children.  In my head, all of the parents are me.

When Phoenix gets called in, things become more like a family reunion.  The nurses are so happy to see her again and always tell her how she has “grown so much!” and how “she looks so good!” and how pretty her hair is.  We walk by familiar doctors with great big smiles for Phoenix.  In our exam room we settle in, and Phoenix plays her iPad to avoid boredom and I distract myself with Facebook and Candy Crush.  I cannot be a human until somebody brings in the results of the blood counts.  Lately we have only heard the best results possible.  Today was the same.  All of the blood counts look fantastic!  Phoenix usually asks “when” she is allowed to do some activity, and the doc or nurse practitioner says “not yet”.  Today it was about school…she will not be able to return until December (and that is best case).  A few tears were shed, and then we had some cookies.

The drive home doesn’t seem as long.  A celebratory lunch at Flapjacks is usually involved.  Once on the road, I can feel the tiredness creeping up and the 500lb imaginary weight is off my shoulders.  I do some praying and thanking God.  I think about our amazing support group of friends and family who will be so happy to hear our good report.  I sing along to the radio.  Inevitably something on the radio makes me cry…but in a happy way. :)

Phoenix will go back to the stem cell clinic in 3 weeks for her “immunoglobulin profile”, which is a blood test to determine how many T cells and B cells are in her white blood cell count.  We hope there is exactly the right amount of those guys to show that she has a fully functioning, and completely cancer-free, immune system.

Thank you for reading and supporting and loving.