Day 17, Chemo Round 4 :: More Waiting

You missed a spot. We may have been
able to squeeze in another "sticker"
between her central line and the
existing EKG leads... maybe. 

She's such a trooper! Jade ended Day 17 with a 10 o'clock EKG.  A couple of the medications she is taking can impact heart rhythm and function, so they have been keeping a close eye on it.  This is the third or fourth EKG she has had over the past two weeks. If she's anything like her auntie, the docs will confirm that she has a "good heart" in the morning.

Hemoglobin: 8.3
Platelets: 63
White Blood Cells: 0.71
ANC: 0

More prayerful waiting is in store. Thank you for standing -- and kneeling -- with us.

Day 16, Chemo Round 4 :: Going Nowhere Fast

Hemoglobin: 8.7

Platelets: 90

White Blood Cells: 0.71

ANC: 0

So today we saw no improvement with Jade's ANC and a small dip with hemoglobin and platelets... But Jade was too enamored with her new butterfly sundress to notice!  

Thanks for checking in and keeping Jade in your thoughts and prayers! 

  

Day 15, Chemo Round 4 :: Counts Update

 After Memorial Day transfusions of red blood cells and platelets, Jade got a much needed boost:

Jade staying hydrated and keeping
the IV fluids at bay. 

Hemoglobin: 9.0 
This is up from Sunday's count of 6.6... Low hemoglobin levels typically manifest as fatigue, shortness of breath, etc. The typical range is 10 - 14. 


Platelets: 107 
This is also up from yesterday's miniscule 6... low platelet levels are an indicator of a diminished capacity to stop bleeding, internal and otherwise. The normal range is 133 - 333.

White Blood Cells: 0.51


ANC: 0
Jade's ANC, absolute neutrophil count, is a measure of her immune system's ability to fight against infections, germs, etc. Her ANC must reach 200 and stay there for at least two days before there is any speak of discharge papers and going home.  


(Forgive me if I sound like a broken record, but I wanted to define some terms for those of you just tuning in.)


It's actually kind of bizarre how I can write so flippantly now about transfusions.  I was a nervous wreck when Jade her first transfusion five months ago (even though the doctors assured us they did this all the time, I was still operating on my circa 1990s information on the safety of blood transfusions, etc.) While the transfusions have become -- more or less -- a routine part of her treatment, their importance can't be overstated.  Carrying oxygen to body cells and helping blood to clot are true examples of heavy-lifting. If you haven't recently, please find a blood drive near you and give blood! www.redcross.org.    


As always, thanks for checking in on Jade and continuing to lift her up in your thoughts and prayers.  

Day 14, Chemo Round 4 :: Upward From Here

Jade sporting her new headband,
courtesy of Bands for Beauties.

Jade's ANC hit zero this weekend, which means onward and upward from here.  I cringe at the thought of our possibly being here another 30 days, but we will do what we must.  

This round has already had its share of quirks -- starting out in the isolation unit, beginning a new anti-fungal drug which requires our keeping a food diary, the chemo claiming Jade's eyebrows and eyelashes, skin irritation under both of Jade's eyes, and green chemo pee.  That is enough medical excitement for us, so we're looking forward to more "mundane" surprises for the duration of this hospital stay -- like Little Jay's learning how to ride a bike last week (yay!) and Jade's counting to ten and expanding her conversational vocabulary (hello, how are you, i'm fine).

Special thanks to Mama Gayle, Darla Chapman -- muscle behind Bands for Beauties and mom of a brave leukemia survivor, three-year-old Starla, who recently completed her AML treatment and is in remission!, Jade's Chemo Angels April and Meagan, and all of Jade's cheerleaders, supporters, and prayer warriors who continue to keep her in your thoughts and prayers! We'll try to keep it boring over here. 

Through Day 6, Chemo Round 4 :: Reinforcements!

Big Brother in Little Shirt. 

J: It's not too small, Mommy. I got it
when Jade was about to be born.
Me: Yeah, that  officially makes it 

too small.

The cavalry arrived this weekend -- in the form of Auntie Shameika and Grandma -- and not a moment too soon.  The doctors have cautioned us that this round, is on average, a week longer than previous rounds... Fun.  While overall uneventful, these have been a restless six days -- with 3:30am, 5:30am, and 5:30pm chemotherapy infusions, round-the-clock IV fluids, diapers/pajamas/sheets soaked with bright green "chemo pee" (the newest addition to Jade's chemotherapy regimen is mitoxantrone, a drug bright blue in color when it's infused in... and green when it comes out), Jade's discovery of her ability to refuse to swallow her antibiotics, and the return of the steroid and saline eye drops rotation that is administered every three hours. (I'll only briefly mention that on top of the start of round 4, the long-term sub for Little Jay's class, who began in April after a string of substitute teachers "lead" the class since February, is also no longer with the school.  A surprising and disappointing progress report was the subject of many back-and-forth communications last week; we have a meeting scheduled for Thursday.)   

Jade continues to wow us with her winning smile and high spirits.  But needless to say, the arrival of Auntie Shameika and Grandma was quite welcome by all... I went home Friday night and managed to get in 11 hours of uninterrupted sleep, but not before my dear sister playfully (?) chastised me, "Ummm... Do we need to get the Maid Brigade in here?"  Both kids enjoyed the special attention that only an auntie and grandma can give: Jade got an extra "handler" to run behind her just as frantically as mommy does, making sure she doesn't get too far ahead of her IV pole and tug too hard at her central line; Jaytoe had his hot dog/chocolate milk/Chick-fil-a advocate going to bat for him.

Well... another couple of hours before Jade's next infusion (and eye drops).  Thank you so much for checking in and for your continued prayers and positive energy.  We'll keep you posted about Jade's progress.

Day 1, Chemo Round 4 :: Dancing (Inside and Out)

Jade in her early 80's leg warmers ready for her
audition for the remake of "Fame." 

More than half of Jade's treatment plan is officially behind us!  That alone is reason enough for celebration, but to sweeten the news, we started round four of five yesterday after receiving "clean" results from Friday's bone marrow biopsy!


Jade returned to the unit yesterday and, literally, after hours of lab work, clinical study discussions, visits to the play room, teen room, and art room, and a couple of bike laps around the floor, a room became available and we started to get settled in around four in the afternoon.  Everyone was really happy to see Jade -- from the child life specialists and art therapists to the doctors and nurses.  In fact, several of the staff members have asked if we ever get tired of them coming by to see what she's up to, giddily watching her carry out her day-to-day, or hearing them say how cute she is.


I didn't fully understand why the staff here is generally so excited to see Jade, but yesterday's nurse, who has worked on the unit for about five years now, answered the unasked question.  She told me that "amazing" is an understatement when it comes to describing the kids she's met here.  And while it sucks that Jade is here (another understatement), she's so glad that Jade is here because she is so happy, playful, full of life.  It's motivating, reassuring for the staff, other parents, other patients to see kids in treatment like this. Hearing that made today's devotion particularly timely: "Dear Heavenly Father, may my life bless others today, and everyday, so they can see you and your love more clearly."  Jade's bravery and strength throughout this journey is indeed divine and inspiring, especially to me.


Well, we're off to run the halls and spread some of Jade's cheer before the day's chemo commences at 12:30.  Thanks for checking in. Please continue to keep Jade and all of the children and families traveling this journey in your prayers.

Day 27, Chemo Round 3 :: We're Home!

Jade reading a bedtime story
to Little Jay from the comfort
of our own home!

This round was no longer or shorter than Round 2, but I think the cumulative effect of this journey that began in January is really starting to show its face around here.  Restlessness is the name of the game, so Jade's discharge today was really welcome news!

I don't fully understand how God works, but I know He does -- Jade's ANC jumped to 1,400 this morning.  So, after an EKG and echocardiogram to confirm that the chemo had not decreased Jade's heart function (one of the scarier potential side effects), we were sent on our way with
     1. scrips for meds to take at home,
     2. a Friday 8:30am appointment for an out-patient bone marrow biopsy &
     lumbar puncture, and
     3. a Tuesday, May 15th readmission date.

However short the break, we are grateful for this time together... for this space to breathe. My father came to the hospital to help pack up our month's worth of supplies, clothing, art projects, etc. and get us back home.  Jade was super excited to get fully dressed-- jacket and all -- and walk the halls to tell anyone she saw "bye-bye!!" She rocked out to Dru Hill and D'Angelo on the ride home and proceeded to run our household as soon as she walked through the front door (no small feat given the tall grass our lawn was sporting... yes, amidst all of this, we have become those neighbors.) We'll be enjoying family time at home until Jade is readmitted... and just might get some yard work in.  Thank you for your continued prayers and support.

Day 25, Chemo Round 3 :: A Quiet Sunday

Jade attempting to clean up the "mess"
she created with her bubbles. 

'Twas a quiet day. Jade's ANC rose from 110 to 160, so we're almost to 200.  We're praying that her ANC continues to trend upwards; she'll be discharged for a brief break between rounds when her ANC is above 200 for two consecutive days. So, hopefully we'll be able to go bring Jade home in a couple of days.

Dad was on duty for the most part of the day; I was at home, cleaning up a bit in preparation for Jade's return and trying to nurse Little Jay back to health. He's got a pretty nasty cough and appears to have some kind of cold; not fun for him and not exactly something we can have with Jade coming home soon.  So Robitussin, rest, and vitamin C were on order... even though he insists he is not sick -- my nose is just drooling, mommy; I sure hope that does the trick. I'm back at the hospital for the next couple of days and nights and hope to be bringing Jade home and to a healthy big brother very soon. 

Thanks for checking in and keeping Jade in your thoughts and prayers!

Day 24, Chemo Round 3 :: Bahumbug!

Our plans to bring Jade home took an unexpected turn today when we woke up and learned that Jade's ANC had fallen from 230 to 110, which means no discharge this weekend.  Unfortunately, I had packed up just about everything the night before -- from the playmats and puzzles to the oatmeal and apple sauce -- and sent it home.  But, it turned out not to be a day of twiddling thumbs and staring at walls; thankfully the Art Room was open this weekend (the first weekend since we were admitted in January.)  So, after taking her five morning meds like a champ (see video below), Jade was able to paint and blow bubbles to her heart's content. Our prayerful watching and waiting continues; thank you for all of your prayers and support.

Through Day 23, Chemo Round 3

I know, I know, I know. It's been a full 16 days since the last blog post.  But don't be misled by that inactivity; Jade has been anything but.  It is her mom that needed a break (I knew I wasn't in a good place when I started crying in Little Jay's IEP meeting... I always have my game face on during those.) I guess it all - family, lack of sleep, work, flat tires, dying motors - just caught up with me.

The past 16 days have been filled with the ups and downs that have come with each round: dysfunctional central line, blood and platelet transfusions, weight loss of 2.2. pounds, unwanted discussions about feeding tubes, constipation, new meds, beneprotein.  I won't bore you (or exhaust myself) with the details. Throughout it all, Jade has had the highest of spirits -- dancing, stickering everything and everyone in reach, blowing bubbles, running the halls, singing(she has quite a few songs in
her repertoire now), and counting (all the way up to ten!)

Jade autographing a pic
for David Cook.

But it's safe to say, that even with a visit from David Cook (of American Idol fame) today, we are ready to go home! Jade went to sleep last night with an ANC of zero and woke up with an ANC of 230.  If it stays above 200, we're looking at going home this weekend. At 24 or 25 days, that would make this our shortest hospital stay this year!

Thank you everyone for your continued support and prayers.