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6 weeks = 6 months
posted by Liz Zogby on
Sunday, March 30, 2014
Is it possible that time
is slowing down? The last six weeks since Hope's diagnosis feel like an
eternity. I almost don't remember what life was like before Valentine's Day.
We spent six hours in the ER tonight because Hope had a low-grade fever. Anything over 100.4 requires a call to our doctor and a trip to the ER for a work-up and antibiotics. They worry about blood-borne infections and need to culture a blood sample to make sure that she's safe. It takes a long time to access her new port and infuse the two antibiotics and monitor her before we can go home. But we are home now and she is fast asleep. Whew.
It was a long week. She started her new phase on Wednesday and had chemo Wed-Sat. We had home-health nurses come here to give her chemo Thursday-Saturday, but we also ended up going into clinic on Friday to get red blood cells. And tomorrow it's back to the clinic for immunoglobulin to boost her infection fighting power.
Through it all, she is beautiful and strong. She understands about the blood pressure cuff "giving her arm a hug" and the pulse-Ox being "a light for her finger." She deals with the meds and the needle sticks and still says "thanks" when the nurse brings her water and gives the doc a high-five when she leaves. I tell ya, that girl is an inspiration.
Today she inspired her amazing cousin and aunt to run in the pouring rain in the inaugural Race for Respect in DC for Down syndrome awareness. They raised $1800 for the Chesapeake Down Syndrome Parent Group.
We spent six hours in the ER tonight because Hope had a low-grade fever. Anything over 100.4 requires a call to our doctor and a trip to the ER for a work-up and antibiotics. They worry about blood-borne infections and need to culture a blood sample to make sure that she's safe. It takes a long time to access her new port and infuse the two antibiotics and monitor her before we can go home. But we are home now and she is fast asleep. Whew.
It was a long week. She started her new phase on Wednesday and had chemo Wed-Sat. We had home-health nurses come here to give her chemo Thursday-Saturday, but we also ended up going into clinic on Friday to get red blood cells. And tomorrow it's back to the clinic for immunoglobulin to boost her infection fighting power.
Through it all, she is beautiful and strong. She understands about the blood pressure cuff "giving her arm a hug" and the pulse-Ox being "a light for her finger." She deals with the meds and the needle sticks and still says "thanks" when the nurse brings her water and gives the doc a high-five when she leaves. I tell ya, that girl is an inspiration.
Today she inspired her amazing cousin and aunt to run in the pouring rain in the inaugural Race for Respect in DC for Down syndrome awareness. They raised $1800 for the Chesapeake Down Syndrome Parent Group.
ZERO
posted by Liz Zogby on
Thursday, March 27, 2014
Big news arrived during
our marathon day in the clinic yesterday. We arrived at 8 am - she had her new
central port accessed for the first time, a lumbar puncture with chemo, and two
new chemo drugs by IV (with loads of fluids to avoid bladder damage). And some
anti-nausea meds and another new oral chemo drug. Whew. We shut the place down
- truly, we were the last people there. But at the end of the day we sat down
with our sweet young doc, a pediatric oncology fellow we call Dr. Joe, because
when we first met him as inpatients, he was wearing a mask and Hope thought it
was her Uncle Joe. Dr. Joe (aka Gordon) is a good sport and doesn't mind the
nickname at all. Anyway, we came to tell us that the bone marrow sample from
the end of induction showed had ZERO MRD (or minimal residual disease) - it's
the very sensitive analysis to detect cancer cells (up to one in a million
cells). Again, it doesn't change our treatment protocol but it is great news
for prognosis.
Delay or Reprieve?
posted by Liz Zogby on
Monday, March 24, 2014
Mondays have been days
for procedures since Hope's diagnosis. She has spent part of every Monday, save
one, in the OR getting bone marrow tested or a lumbar puncture. We arrived
today at 8:00 am to begin the Consolidation phase of her treatment - a lumbar
puncture, plus 2 new chemo drugs by IV, plus a new oral chemo. Turns out, I
have lost track of the date and her appointment is Wednesday at 8:00. Oops.
Luckily she had only been up since 6:30 complaining about food, and I had some
snacks with me, so she ate immediately. (My dad had taken the 7:00 am Acela to
Baltimore to come with us, as Greg needed to work today. Sorry, dad!)
So now we have two more days to dread the upcoming phase and worry about her blood counts, and wait for the new clock of 56 days of Consolidation can even get started. But on the positive side, she has two more days to feel better. This weekend she really seemed more and more like herself. She painted, she laughed at her silly sibs, ate a slightly more expansive diet, slept more soundly, and even started walking a little bit. A couple more days of healing before the next round is probably a good thing.
So now we have two more days to dread the upcoming phase and worry about her blood counts, and wait for the new clock of 56 days of Consolidation can even get started. But on the positive side, she has two more days to feel better. This weekend she really seemed more and more like herself. She painted, she laughed at her silly sibs, ate a slightly more expansive diet, slept more soundly, and even started walking a little bit. A couple more days of healing before the next round is probably a good thing.
End of "Induction"
posted by Liz Zogby on
Sunday, March 16, 2014
Tomorrow is the last day
of Hope's first phase of treatment, called Induction. We give her the last dose
of steroids tonight (yay!) and then tomorrow (during another #$%&
snowstorm!!!) she's getting a central port put in (so they can give her chemo
and other IV fluids, and draw blood more easily for the duration of treatment),
another bone marrow aspiration to see how much progress we've made, and a
spinal tap with chemo. It's sure to be a horrible morning since she can't eat
and her OR time isn't until 12:30. Oh, and we'll have to dig the car out and
slip and slide all the way to Hopkins... But it feels like we are getting
somewhere to put one phase behind us. I'll try to post an update after the
procedures. Then on to "Consolidation."
Six Days and Counting
posted by Liz Zogby on
Tuesday, March 11, 2014
The first month of
treatment involves a LOT of the steroid dexamethasone, which kills
lymphocytes,or cancerous white blood cells. We were warned before we started
treatment that the dex would make her really hungry, and could change her
personality making her irritable and prone to tantrums. It's all played out as
predicted and now we are counting the days until the steroids end. Six days -
and then another week for the effects to wear off. Her food cravings are
comical - anything salty and crunchy: rice cakes, potato chips, bacon, pizza
crust (no cheese or sauce), crackers. And this weekend: an entire baguette
every day. She has a serious moon face and quite a belly. Less comical are the
tantrums, which are so unlike our usually happy kid. While we are assured that
we will look back fondly on these days of nonstop eating when we hit later
months of chemo that make her nauseous and unable to eat much, we are looking
forward to having some good days when she acts a little more like Hope. And did
I mention the constant drone of Barney in the background? We are also ready for
a little more energy so we can replace the iPad with some toys. One foot in
front of the other...
Rapid Early Responder!
posted by Liz Zogby on
Tuesday, March 4, 2014
We got GREAT news
tonight! Hope's bone marrow sample, taken during yesterday's snowfall, showed
1% blasts (or immature white blood cells). Since 5% is "normal," Hope
has technically reached remission in the first two weeks of treatment and is
labelled a "rapid early responder"! It doesn't change her treatment
protocol much, although we do avoid one particularly nasty chemo drug that has
potential cardiovascular side effects, but it feels really big psychologically.
We'll take good news when we can get it.
Pre-Snow Update
posted by Liz Zogby on
Sunday, March 2, 2014
When snow keeps schools
closed for the umpteenth time, it's annoying, but when snow threatens Hope's
treatment schedule it's infuriating! We are scheduled to go to the Hopkins
clinic tomorrow for a bone marrow aspiration and chemo treatment. The bone marrow
test will give us a sense of how Hope has responded to her treatment protocol
so far - and label her as a slow or rapid responder, which slightly alters her
treatment for the next two weeks. The idea for this first month of treatment is
to blast her into remission, then spend the next 6 months hunting down any
cancer cells that are hiding, and then spend 2 years making sure it never comes
back. We want to stick to the schedule!
We got home last Tuesday after 11 days in the hospital. We are so happy to be with Celia and Quinn, but it's hard to be home. The steroids that are a mainstay of leukemia treatment make Hope crazy hungry all day long, and occasionally just crazy. So far a constant diet of Barney episodes, rice cakes, bagels, pizza crust, and potato chips seems to be the best way to keep her happy. Not exactly what we are used to.
Thanks for all you have done to support us as we set out on this road. Your emails, notes, and wonderful meals have made us acutely aware of how lucky we are to have such a loving group of family and friends.
We got home last Tuesday after 11 days in the hospital. We are so happy to be with Celia and Quinn, but it's hard to be home. The steroids that are a mainstay of leukemia treatment make Hope crazy hungry all day long, and occasionally just crazy. So far a constant diet of Barney episodes, rice cakes, bagels, pizza crust, and potato chips seems to be the best way to keep her happy. Not exactly what we are used to.
Thanks for all you have done to support us as we set out on this road. Your emails, notes, and wonderful meals have made us acutely aware of how lucky we are to have such a loving group of family and friends.
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