Annie’s Big Challenge

 

Thursday, June 23, 2016

• Annie had some weird bruises scattered around her body, and was developing a little rash on her stomach.  She had been complaining for a few days of head and stomach aches.
• 10:15 doctor appointment – Dr. Frank looked her over and observed inflamed spleen and liver – this, coupled with her other symptoms were apparently classic signs of leukemia.  She made some phone calls and returned to room and advised that Annie should go directly to the Valerie Center at Goryeb Children’s Hospital and they would be waiting for us there.  She also disclosed worst case scenario – leukemia.
• Headed to hospital – Annie wanted to know what was up – told her we just needed to visit with another doctor who knew a little bit more about her rash.  She wanted to go to “daddy’s work” and get lunch, but didn’t fuss too much.
• Prior to meeting with the friendly team of nurses, techs, etc. at Valerie Center, sat in waiting room with a couple of bald-headed little kids playing next to their moms.  Traumatic for me, but Annie paid no attention.
• Nurse came out and applied some numbing cream to Annie’s arms and told me it would lessen her discomfort when they went for blood sample.
• Things kind of sped up after that – Fern arrived, met with Doctor Halpern (pediatric hematologist/oncologist).  He explained that a blood test would determine what was going on but also observed swollen organs and explained what the likely cause was.
• Nurses/helpers kept Annie busy with games and iPad.  Helped to distract her when the installed a temporary port in her arm.
• Blood results returned, conclusive diagnosis, and Annie admitted to hospital. 
• Met again with Dr. Halpern and physician’s assistant, Maureen (told her I’d remember her name because of Aunt Maureen).
• Annie got “room 10” – by all accounts, best room on the ward.  Big room, lots of colors, big TV, and a new toy and personalized pillow case where already there when we got there.
• Immediately, we were told that Thursday was ice cream day.  Dad went down and guessed chocolate and strawberry, whipped cream, chocolate syrup, and sprinkles.  All good choices except the strawberry.
• Visits from the grandmas and Oliver and Tich.  Some were not quite pulling off the old English stiff-upper lip, yet, but they’ll get the hang of it.  Oliver got to work trying out the Lions’ den – room down the hall with computers and games and stuff.
• Patient’s dinner arrived, but no appetite. 
  
• Oliver and Tich off to “Fun Day” with Uncle Jay and family.
• More meetings, etc. and then a late supplies delivery from Uncle Jared.
• Lots of texts and emails flooding in from the best family and friends anyone could ever ask for.  Hard to read, but helpful all the same.  Counting our blessings for that.
  

Friday, June 24, 2016

• After a long night of interruptions from nurses, vitals people, etc. Annie thirsty and pretty cranky.  She also is beginning to get sick of the port in her arm.  Refuses to move it, so it’s getting crampy. 
• Lots of activity in preparation of 11:30 procedure to install a catheter in her chest which will serve as site to give meds and I believe draw blood.  Also on the slate, bone marrow aspiration, and spinal tap.  Bone marrow will determine how much leukemia there is (and will direct course of treatment as High Risk or Very High Risk).  High Risk already guaranteed by white blood cell count of 60,000.  Spinal tap will determine whether there leukemia in the fluid in her spinal cord and surrounding her brain.  A month from now, doctors will know from bone marrow whether there is a good regeneration of white blood cells absent of leukemia cells.   Lastly, a couple of weeks from now, we’ll know if there is a problem with chromosomes – in most cases this would not be good and would change her prognosis negatively.
• . . . .puppy therapy was coming in at 10 or so, but the transportation person arrived before the puppy – should have never told her about the puppy.  Down to OR. . . .
• During surgery, met w/ social worker, Ann, who talked to us about things to come and how her team could help with talking to Annie as well as Liv and Tich.  Some reality conversations, but better to get prepared now for the road to come.
• 12:30 – crank wakes up in recovery – finally gets a drink of water that she’s wanted all morning.  Woozy, but no nausea. . . .yet.