I am behind on updating you all on MJ. It has been a rollercoaster ride for several weeks.
On August 21st her counts were good enough to
restart chemo at 50% of her previous dose, but not quite what I was hoping for
after 1 ½ weeks off chemo. I was hoping
for an ANC so high that they would restart chemo full strength… and then
some.
Ya, not so much. ANC was 924. Not so bad, not so bad.
But not dramatic.
Then Sunday August 26th Madelyn had a fever. 101.5.
What a surprise!
It was too be a perfect Sunday. My sister,
Jill (who is Madelyn’s namesake), and her never-a-dull-moment, fun family were
here for a visit. The Jarnagin Quad, includes the sweet and individualistic
Beckett Ray (8 yrs), the Tough (note the capital T) and yet oh so vulnerable
Lucas James (10 yrs) and the loveable
Emmett (aka hubby). My sister Jill is a
little like Madelyn: always accepting,
always smiling, always ready to jump in and DO, always able to chat with anyone
in any situation. Plus my riot of a sister
Jen drove up from Kirkland (this is who we usually stay with while in Seattle
for treatment) with her hilarious and precocious
boys. AND THEN, the day was to be topped
off with dinner at The Harrington’s! We
love this family. We feel at home and “with”
family with Amy, Pat, Brennan, Ryan and Megan.
Such the perfect weekend.
And then a FEVER!?!?
Strait to Children’s Hospital for Madelyn and I! Madelyn and I left at 10:30am, were at the
hospital for 2 hours, discharged and drove all the way home. Nice God Damn day. My girl is SIX YEARS OLD! She should be playing. She should be eating too much ice cream. She should be really tired from…. Riding
bikes, being at the beaching, playing soccer with her cousins, splashing in the
hot tub…. not sitting in the car, not from medications making her drowsy, not
from CANCER.
The day, at least, ended on a good note. My whole family and Peter’s parents were in
the drive way waiting for us as we drove up.
All 11 of them waving and smiling.
It made both MJ and I super happy.
Then Amy brought over dinner for us.
THANK YOU, all of you for making a sucky day end on such a good note.
Two days later she had another CBC at Island Hospital. She was full on neutropenic. ANC was 180!!! What?!@#$
LOCK DOWN. If she gets a fever
now it is strait inpatient.
The clincher, was Peter and I had booked a short anniversary
trip to New York. We were only to be
gone from the girls for four days. My
parents, Peter’s parents and Ashley were taking turns watching the girls for
us. Do we go? It was so stressful deciding. I talked to other A.L.L. Moms (Leukemia buddies)
and I spoke with our doctor. The doctor
encouraged us to still go. Ultimately, I
used my gut to decide. I somehow just
knew it would all be ok. Madelyn was
fantastic. Full of energy.
So we went. And she
was fine. And probably they enjoyed
themselves more having Lock Down in a different place than at home. Lock Down is just the worst. Peter and I had a good time in my old town and we were able to relax. Our 10 year anniversary day was Koren Spa in Flushing, noodles in China Town, photo exhibit at Grand Central Station, MOMA exhibit, dinner and bar hoping in the East Village until 3:30am. It was Peter's first time really spending time in the city and I had fun showing him around.
Madelyn had a CBC on Tuesday Sept 4th, one day before the
first day of school, and it revealed she had rebounded again. ANC 1049.
Yay!!!!! She can go to school.
Madelyn could not have been more excited… mixed with that
good kind nervousness... she really was on Cloud
9. Peter went to MJs class at 3pm to
read the class Chemo To The Rescue and introduce her class to Madelyn’s
cancer. (It’s a great book:
http://www.chemo-to-the-rescue.com/images/newbook/Page1.html
). We had planned to drive her home after, but nooooo,
she wanted to ride the bus. So Peter put
her on the bus and I anxiously waited at the curb.
Dude, Mama was an anxious mess all day! I was not seeing that comin’.
Madelyn went to the first day of school and then she went to
Seattle Children’s :( I am so bummed that her first two weeks of
school couldn’t have been during her good weeks. The CBC Thursday revealed she was down
again! What the? ANC 700.
I am so worried and … All. Worn. Out.
People are often amazed at how much I know and how much I
can remember about MJs counts, symptoms and treatment. “You are so strong and knowledgeable.” This my daughter… her LIFE … MY life… Madelyn
and Sophia are my soul, not my patient. And yet I am powerless against time. Waiting and worrying, waiting and worrying,
waiting and worrying, waiting and worrying…
Please, please make this the LAST five months of our
journey; Not the beginning.
This coming Monday morning (Sept 10), during the apex of her
Dexamethazone symptoms we’ll be going in for a CBC at 8am and then driving her
straight to school. Poor honey. Welcome to your first week of school: Emla cream, early morning pokies, late
arrival at school, extra hunger, pain, emotional ups and downs, constipation.
Welcome.
If her counts are up, which they should be as the
Dexamethazone inflates the ANC, we will restart chemo again. Hopefully this artificial boost will be what
she needs to regulate.
I want my Madelyn to be six years old… not six years old
with cancer. September is national
childhood cancer awareness month. Trust
me, I am aware.
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