There's No Place Like ... Home!

Jade is happy, healthy, at home, and one step closer to putting this cancer journey behind her.  So excited to have headed home this weekend with our baby girl!  She is scheduled for a biopsy on August 21st, which we pray will show no cancer in her bone marrow.

Now, 'tis time to catch up on some rest!

Thank you for all of your prayers, positive thoughts, and support throughout this journey.

Day 32, Chemo Round 5:: Almost Home!

Jade's ANC more than doubled overnight.  So, we celebrated with Beyonce... Okay, not with Beyonce, but with a pretty mean dance to Love On Top.  (Jade's almost as big of a fan as I am.) We are almost home!  The discharge paperwork has been prepped, the prescriptions have been written, the bags have been packed (in my mind), and we've got three feet out of the door. (One is mine, but I'll be carrying Jade. So, yeah. Three feet.)  :)

Today's Counts
White Blood Cells: 0.65
Hemoglobin: 13.5
Platelets: 56
ANC: 170

Day 31, Chemo Round 5 :: Looking Up!

Who's that lady?

Things are looking up from here!  Jade is making platelets and hemoglobin all on her own (Tuesday's transfusion will be the last for this admission), and her white blood cells and neutrophil count are beginning to recover steadily. The mouth sores and infection are vanishing and her appetite is picking up quite nicely... and after six long days, she pooped.  I'm just about ready to pack our bags.  :)

Thanks for every prayer sent up and positive thought sent our way.

Today's Counts-
White Blood Cells: 0.63
Hemoglobin: 13.3
Platelets: 52
ANC: 80

Day 29, Chemo Round 5 :: Hello, ANC!

Soooooo glad to see you, ANC.

Jade's ANC finally came out of hiding today! Never mind that she started a new medicine (nystatin) for a fungal infection in her mouth and had a blood transfusion because her hemoglobin level (oxygen carrying capacity of the blood) dropped too low and her pulse rate was elevated (the body increases the heart rate to move blood -- and the oxygen it's carrying -- faster through the tissue). 

A pint of blood and three hours later, there was no stopping Jade.  Walking, coloring, singing, you name it.  It wasn't until nearly 11pm (gasp) that she declared, "I'm finished," and traded her Color Wonder markers and Tinker Bell coloring book for a splash of milk and momma's kisses.  Good night, sweet baby!

We have our hopes set on a discharge this week, so resolving this mouth situation and an ANC of 250 for at least two days is high on our prayer list. As always, thanks for keeping Jade in your prayers and thoughts.

Today's Counts:
White Blood Cells: 0.36
Hemoglobin: 7.0
Platelets: 21
ANC: 20
Pulse Rate: 140 at rest (Jade's normal rate is 100)

Day 27, Chemo Round 5 :: C'mon ANC!

Ready for bed.

We've had a couple of restless nights, but it looks like Jade and I will finally get some sound sleep tonight thanks to some  "Magic Mouthwash" - a mixture of maalox, benadryl, and lidocaine that is actually called by that name - and a small dose of oxycodone.  The tiny sore that we spotted on Jade's tongue last week didn't alarm us at first; mouth sores, or mucositis, are a know side effect of chemo, especially the chemotherapy agents that Jade receives.  Jade actually developed one mouth sore late in her previous round of chemo, but it resolved pretty quickly on its own.


The one sore we saw last week, however, is now at least three (apparently these little suckers can pop up in the mouth and throughout the throat; the chemo attacks cancer cells and other rapidly dividing cells.  The cells that line the mouth, throat, stomach, and bowel fall into that "rapidly dividing" category).  They're pretty uncomfortable from what the doctors describe and from what I can gauge from changes to Jade's normally playful demeanor and healthy appetite -- this cranky baby woke up every hour on the hour overnight and only ate a couple of spoons of oatmeal, a few bites of a pancake, and a couple of crackers all day.

Aside from frequent rinsing and smart eating/drinking, there's no real treatment for the sores themselves. The mouthwash and pain medication are to ease the discomfort and make eating and sleeping more possible. The sores typically clear up when the ANC recovers, so... c'mon ANC!

Today's Counts
White Blood Cells: 0.19
Hemoglobin: 7.5
Platelets: 11
ANC: 0

Day 25, Chemo Round 5 :: A Roller Coaster Ride

Sorry for taking you guys on this roller coaster ride! Believe me, we wish it were all uphill too. Jade's ANC lost the ground that it gained yesterday and is back at zero.  Bahumbug.


Today's Counts
White Blood Cells: 0.2
Hemoglobin: 8.3
Platelets: 22
ANC: 0

And the peach fuzz that was beginning to fill in quite nicely on her little head is also coming out again ... I know it's just hair; it just takes me back to how sobering it was when Jade first lost her hair.  The sinking feeling that came with waking up to pillowcases covered by her tiny curls each day, and no longer being able to talk myself out of the diagnosis, with her bald head a constant reminder of her cancer and the queue for my final acceptance.  But so much has changed since then; we have all grown and learned so much (Jade even identifies her central line by its proper name, "broviac") ... and now, the end of her in-patient treatment plan is almost in sight.  Thank God for that! 

Jade's Bush... Jan 2012

Jade's Fade... Feb 2012

Happy to be...
March 2012

Shiny
April 2012

Bye-bye, eyebrows and lashes.
May 2012

Where'd they go?
June 2012

Welcome back, brows.
July 2012

Enough to brush?
August 2012

Day 24, Chemo Round 5 :: ANC On the Rise

An "all clear" from ophthamology and a rising ANC -- we are so thankful.  We just need Jade's ANC to keep rising (and for her constipation and mouth sore to resolve) so we can head on home! Thank you for continuing to keep our little girl in your thoughts and prayers.


Today's Counts
White Blood Cells: 0.2
Hemoglobin: 9.3
Platelets: 22
ANC: 10

Day 23, Chemo Round 5 :: The EVAN Foundation

Wednesday nights rarely disappoint Jade; they are, after all, Treat Cart nights, when all of the patients on the oncology floor are visited by the EVAN Foundation's Treats and Treasure Cart.  Sunglasses, puzzles, bracelets, necklaces, books, wands, a tiara -- all reasons that Jade looks forward to the Treat Cart.

Evan's Victory Against Neuroblastoma (EVAN) Foundation is the labor of love of two parents who lost their only child to another rare form of pediatric cancer, neuroblastoma, less than two years ago.  Since then, they have dedicated themselves to fighting for a cure everyday by raising awareness, and supporting research and patient wellness programs (like the Treats and Treasure Cart.)  www.theevanfoundation.org 

Jade and Madison take to the halls in their princess fare
after a recent visit with  the EVAN Foundation's Treats and Treasure Cart.

I hope that one day, after Jade's treatment is finished, we will find some way to give back and support other families who have been affected by pediatric cancer. Thanks for checking in on Jade and keeping her lifted up in your thoughts and prayers.

Today's Counts

White Blood Cells: 0.2

Hemoglobin: 9.3

Platelets: 34

ANC: 0

Day 20, Chemo Round 5 :: ANC Still Zero

After a blood transfusion on Friday and platelet transfusion Saturday morning, Jade had a pretty quiet weekend. Patiently waiting for counts to recover and praying that the rest of this stay is uneventful!

Today's Counts:
White Blood Cells: 0.21
Hemoglobin: 10.3
Platelets: 72
ANC: 0

Day 16, Chemo Round 5 :: What Big Eyes You Have!

My phone/camera threw the towel in
today, so enjoy this "oldie but goodie"
until I get back up and running.
Jan. 30, 2012... Jade sporting shades
and 'fro 25 days into first hospital stay.

Progress! Jade willed her eyes open after yesterday's visit to the opthamologist, and now she won't even close them to take a nap during the day.  Being restrained by three adults and having eyelid specula inserted in her eyes to keep them open for an exam just wasn't worth it in the end, I guess.  After wrapping Jade's body tightly in a hospital-issued sheet and enlisting my help and that of two other doctors to keep Jade still, the opthamologist advised me that most parents look away for this part (the insertion of the specula).  A few minutes later though, with the help of a hand-held slit lamp microscope, the opthamologist reported that Jade's left eye was almost completely healed and there was only light "roughness" to the right eye which should resolve within a day or two.  They will continue the erythromycin ointment to help prevent any infection in the eye, but we've already claimed that tomorrow's opthamology visit will show Jade completely in the clear.  We're so happy to see those big, beautiful eyes open again! Now, on to finding something other than coloring with our eyes closed, listening to cartoons, and walking into walls to pass the time.  Thanks so much for keeping Jade in your prayers and for all of your encouraging words.  

Today's Counts:
White Blood Cells: 0.2
Hemoglobin: 7.6
Platelets: 38
ANC: 0

Day 14, Chemo Round 5 :: Open Those Eyes!

Sunglasses Galore!
Once a fashion statement,
now a medical necessity
to keep out some of the extra
light entering Jade's eyes. 

So, false alarm.  It wasn't chemical conjunctivitis... it's corneal abrasions on the surfaces of both eyes.  That's why Jade has been keeping her eyes shut for four days now.  The scratches themselves hurt, but they also let too much light enter the eye, which can also be uncomfortable. An opthamologist examined Jade this weekend (after dropping an anesthetic and dye into her eyes) and discovered the scrapes.  The eye drops were discontinued (no more applications every two hours) and replaced with an antibiotic ointment that's applied to the inner eyelids three times a day with pain medication as needed.  Typically, they would patch the eyes, but since Jade has been keeping them sealed herself and we keep the lights dim in her room or sunglasses on her, no patch is needed.


The scrapes usually resolve within 3-7 days, so we're hopeful that the abrasions and photophobia will all be behind us before the end of the week. Jade still isn't opening her eyes, but she's in much better spirits and, after sleeping away most of the weekend, was up to some of her old tricks today. In fact, her stubbornness and refusal to hold my hand whilst we walked the halls won out a few times today, ultimately resulting in her walking into a couple of walls. Not to worry though, no harm was done.  Visits from the art therapist, music therapist, Ms. Jill (with yummy veggie lasagna and zucchini bread),and Grandma helped lift her spirits (and appetite) even more!  

Today's Counts:
White Blood Cells: 0.16
Hemoglobin: 8.8
Platelets: 102
ANC: 50

Thanks for keeping Jade in your thoughts and prayers.

Day 11, Chemo Round 5 :: Eyes Wide Shut

Today was a pretty rotten day.  Jade spent most of the day in the dark, refusing to open her irritated eyes.  "Too hot!" she said. Jade literally only opened her eyes for eight brief moments today. And though she made an appearance in the playroom and even took a short, guided walk through the halls (albeit with her eyes sealed shut), Jade's inflamed eyes ultimately translated to more naps and even more time in mommy's arms.   

One of the side effects of the high-dose cytarabine that she received this round is chemical conjunctivitis.  When the nurse forcibly pried her eyes open, they didn't appear to be pink, but the irritation to her eyes is clear based on her behavior.  There was no amount of coaxing that we could do -- with the ipad, child life specialist, puzzles, paints, "gummies," and other treats -- to get Jade to open her eyes. So, the doctors have increased the frequency of our beloved eye drops to every two hours (that's around the clock... regardless of who's sleeping or not) and extended the duration (we were supposed to end Saturday morning at 5:30). 

Today's Counts

White Blood Cells: 0.17

Hemoglobin: 9.4

Platelets: 49

ANC: 40 (still haven't hit zero yet) 

Thanks for checking in on our munchkin; your thoughts and prayers are much appreciated.

Day 9, Chemo Round 5 :: Play Date

While Jade and I miss her brother terribly, she found some friends to help pass the time this round... including her very own "twin," who celebrates her birthday on April 7th (the day after Jade's).   Jade and three-year-old Madison took to the halls this week -- in matching headbands (unplanned) and sunglasses -- after meeting up with Madison's older brother and the three younger brothers of another brave transplant patient in the art room. To say that there were beads, feathers, paint, crayons, markers, and dominoes everywhere would be a bit of an overstatement, but I do think I may have heard an audible sigh of relief from the Art Therapist when lunch time arrived and the children filed out of the art room and into the halls. 

Brave girls and super sibs. 

We thank you for keeping Jade in your thoughts and prayers, and ask that you add Madison, who is scheduled for a stem cell transplant any day now, to your prayer lists as well. Unimaginable bravery...   

Jade's counts today:

Hemoglobin: 9.1

Platelets: 88

ANC: 90

Day 7, Chemo Round 5 :: We're Back...

Heading to the hospital for round 5,
 Jade was underwhelmed.

 Sorry for the silence, friends.  This family has been on quite the roller coaster ride these past few weeks marked by the highs of enjoying Jade's unexpected three week stay at home, celebrating Lil Jay's eighth birthday, spending quality family time at home... and the lows: sending Lil Jay to Boston, three bone marrow biopsy appointments and inconclusive results.

Gracefully, the 2% blasts that appeared in Jade's June 29th bone marrow biopsy were only precursor cells.  Because each of Jade's biopsies since her chemotherapy regimens began in January have come back with less than one percent leukemia cells, this apparent increase (however slight) was alarming and delayed Jade's being able to proceed to Round 5.  (If these were indeed leukemic cells that were being produced after four rounds of chemotherapy, Jade's treatment plan would have needed to be intensified.)  Jade went back in on July 6th for another biopsy; her doctors believed another week would either give immature cells an opportunity to mature into one of five types of white blood cells or for leukemic cells to increase in concentration and define themselves.

Jade plays with her
True Hope hairless doll
by Bratz, a welcome back
gift from the team here.

Preliminary results from Jade's July 6th biopsy also showed suspicious cells, but her marrow was ultimately cleared -- less than one percent leukemic cells -- after being sent out to labs in Nebraska for flow cytometry and cytogenetic testing. Jade's system is recovering more slowly than in previous rounds (I guess four rounds of chemotherapy will do that to you) and skewed these biopsies; the suspicious cells that were appearing in Jade's marrow were apparently precursor cells that are maturing. Thank God!

And so, we returned to Children's National Medical Center a week ago to begin Round 5 of Jade's treatment plan. Three-hour IV infusions of high-dose cytarabine twice a day and intramuscular shots (right in Jade's fat legs) of asparaginese are on deck this round, in addition to the typical slew of oral antibiotics and antifungal medications.

Nearly 200 days into this journey, thank you for your continued prayers and support.

End of Chemo Round 4 :: Home!

After 37 long days -- complete with two medicine mix-ups and a mix-up at the pharmacy that resulted in the premature discontinuance of one of Jade's meds -- we're happy to have headed home with our energetic little girl.  We are grateful for this break from the hospital, for this room to breathe and this time together as a family...  I sense a family sleepover coming on...  Jade is scheduled for a bone marrow biopsy on Tuesday; we'll keep you posted.  Thank you all for your continued prayers and support.

Day 18, Chemo Round 4 :: Flashes of Hope

Hemoglobin: 8.1

Platelets: 45
White Blood Cells: 0.68

ANC: 0

Overall, Jade's counts are continuing to trend downward so it looks like we'll likely have a couple of transfusions next week.  But, while we wait for her body and immune system to recover from this round of chemo, we received a professional portrait package from Flashes of Hope, a nonprofit that changes the way children with cancer and other life threatening illnesses see themselves through the gift of photography.

Before Jade was diagnosed, she spent entire days being held -- by me, daddy, Papa Frankie, Grandma, Sata, Pinky, Rev. Reeves -- trying to fight an illness of which we were completely unaware.  Jade's mood during this April photo shoot was slightly reminiscent of those days: she was a little clingy, a little cranky, and still a bit tired from the treatments and would only cooperate in my arms. The truth is that I would hold her all day every day if needed (and if she would let me!), so I'm grateful to Flashes of Hope for capturing these moments with Jade in mommy's arms. Thank you for continuing to keep Jade in your thoughts and prayers.  

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.

Days 5, 6, 7; Chemo Round 3: Flashes of Hope

Jade finished up her infusions Tuesday morning at 6am. No more chemo this round; we just wait for her counts to drop and then recover. This usually takes Jade about 3 weeks.  The IV fluids have been discontinued so Jade is able to roam about freely, the seemingly acidic eye drops will be discontinued tomorrow morning.

Jade had the opportunity to participate in a portrait shoot today with Flashes of Hope, a non-profit organization dedicated to creating powerful, uplifting portraits of children fighting cancer and other life-threatening illnesses.  (www.flashesofhope.org) This is at least the second time they've visited the unit since Jade was admitted in January. They give all patients on the floor the option of having a professional portrait package done....

I remember before the winter holidays regretting not yet having any formal pictures of Jade taken, not yet having sat for a family photo. I've always loved how photographs, portraits can capture a moment.  The family photo albums that our Aunt Lilly used to bring out whenever family and friends visited were special treasures; a few years ago I was able to convince my mother to pass one down to me and let me bring it to my new home in Maryland.  While I still have to work on the family photo, I am very thankful for Flashes of Hope -- for their professionalism, their gift for working with children, and for helping us document Jade's bravery and journey in such a beautiful way.

I've shared some photos from Jade's first Flashes of Hope photo shoot back on Feb. 28th; can't wait to see our mother/daughter portraits from today.  Thanks for checking in on us; I pray the rest of our stay is uneventful.

Days 2, 3, 4; Chemo Round 3 :: Loooong Weekend

Not much to tell.  Thankfully, the past few days have been super quiet. I had a great time with Jade this weekend (I was on duty.)  We spent a lot of time putting puzzles together, sticking stickers on the wall ;), dancing, walking the halls... and enjoying our "room with a view."  This round, we are in a room that is not only directly across from the playroom but also has windows facing the reservoir!  Silly me, I didn't even realize that gazing out onto something other than medical complexes was a possibility.  It is a great reminder that that there is a world outside of the hospital walls.

So far, Jade is tolerating the chemo relatively well.  We started noticing some effects on her fingernails and toenails, but nothing to be alarmed about. There are some changes to this round given the higher doses: eye drops every three hours and IV fluids round the clock.  All of that translates to parental sleeplessness and high-alert wakefulness.  Jade is seemingly unaware of the IV pole that she is tethered to by a central line that runs into a large vein in her chest... so, when she takes off running toward the playroom, bathroom, food cart (you name it) without the pole, there is a lot of running around on our part to make sure the line doesn't get pulled out and we end up with a bloody emergency on our hands. I'm looking forward to the IV fluids being discontinued; hopefully my anxiety level will go down a bit too!  Thanks for checking in, we appreciate your prayers and support.

Day 1, Chemo Round 3 :: Off to a Great Start

Less than 0.1% leukemia blasts detected in the April 10th bone marrow biopsy!

We started Round 3 off with that bit of great news.  Induction was successful! The first two rounds of chemo achieved their goal of bringing Jade's leukemia into REMISSION and giving us our cheerful, spirited girl back.  And Jade must have sensed that walking in; she was excited to be back in the hospital. Her new room directly across from the Playroom didn't hurt either! In fact, she was in the Playroom for at least twenty minutes before she could be convinced to check out her room.

The "less than 0.1%" leukemia blasts, however, is why we press on with the five-round chemotherapy treatment plan.  According to our attending physician, they actually did not find any leukemia blasts in Jade's latest bone marrow sample, but because of the limitations of the science/technology they cannot definitively say that there are absolutely no leukemia blasts present.  We need there to be zero leukemia blasts to reduce Jade's chances of the leukemia returning and wreaking its uncontrolled havoc on her immune system. And so, we proceed with the next three rounds, also known as "intensification," when they pull out all of the stops to rid Jade's body of any lurking leukemia cells.

Round 3 is expected to be the shortest of all rounds (by a few days).  Jade will receive high-dose chemotherapy for five days and then remain in the hospital until her immune system recovers from the treatment. What do they mean by high-dose?  Check out the difference in dosage between Round 1 and Round 3 for the Cytarabine, one of the chemotherapy drugs.

                Rounds 1 & 2                                Round 3
                100 mg/m2/dose                            1,000 mg/m2/dose
                15 minute infusions                         1 hour infusions

That's ten times the dosage strength as the previous rounds... But God is faithful; Jade will have an uneventful and successful Round 3. They've started Jade on prophylactic, or preventive, eye drops.  (I know so many more medical terms now.) The high-dose chemo is known for causing chemical conjunctivitis, among other things.  So every three hours for at least seven days, we'll wrestle with Jade to get the drops into her eyes and let them do their work. Anti-nausea, anti-fungal, two antibiotics, multivitamin, appetite stimulant, and Miralax (no poop for six days) continue.  As do our prayers... and yours, we ask.

'Til tomorrow my friends...

Chemo Round 3 :: Here We Are

Easter Egg Hunt. Car Trouble. Limbo, limbo, limbo.  An eventful way to spend our last few days together at home until sometime next month. Sure, we could easily have done without the car trouble -- a problem with the mass air sensor that landed me, Jade, Lil Jay, and Grandma on the side of the road for an hour yesterday and an unexpected expense.  But we could not have done without Monday's Easter Egg Hunt on our front lawn (Lil Jay has been asking about it for almost a month) or tonight's limbo contest (another suggestion from Lil Jay). Dizzying laughter, wet kisses on sweaty little foreheads, a sense of love and togetherness in the air that you could almost touch, and a prayer for Jade's complete healing... Can't imagine spending the eve of Jade's return to the hospital any other way.  Children's National Medical Center, Hematology/Oncology Unit, Chemo Round 3, 11AM... Here we are.

  

Jade swoops in from behind to seize her first egg! Sorry, Lil Jay.

Jade wasn't ready to accept that they had collected all the eggs... maybe the neighbors have some?

Daddy, we're pretty sure you're out.

Another one bites the dust...

We'll bend the rules a little bit for you.

Less Cancer, More Birthdays!

There are few words to describe how amazing these past ten days have been for our family. Lil Jay was out of school for Spring Break and Jade was home on her own break before the start of the third round of chemo.  We spent a lot of time  playing video games, watching tv, dancing, piecing together puzzles, coloring and painting, jumping on the couch, reading... typical family stuff, which felt really good. And while we didn't get out much as a family (with the exception of last week's check-up at the clinic), Lil Jay -- thankfully -- didn't suffer from cabin fever.  An awesome neighbor and friend invited him to a couple of outings with her children to a park/nature center and local farm; he had a blast!

The icing on the cake, however, was our celebrating Jade's second birthday with auntie, uncle, cousin, grandmas, grandpa, friends... something that I thought we wouldn't be able to do when she was first diagnosed three months ago, when I didn't know as much as I do now about acute myeloid leukemia, when nothing made any sense to me, when my faith was challenged.  From Jade's genuine excitement, which sounded like "ooooooooooooohhhh" when she saw the giant Tinker Bell floating in the living room and the purple, pink, and green "bubbles" dangling above the table; to the thoughtfulness, well wishes, and generosity of family and friends up and down the east coast this was truly a divine weekend.  I'll never again take celebrating a birthday -- or any of you -- for granted... We thank you and love you!  Here are a few, okay a lot, of pics from Jade's birthday bash... Please continue to pray for Jade's strength and total healing as we gear up for an intensified round of chemo, which will begin Thursday, April 12th.

Enjoying the warmth of the sunshine together!

Jade insisted on a walk before the festivities began.

Back inside... Jade's Pixie Hollow.

Fairy food... Yum!  Thanks Monica and Michelle for preparing the salad. 

Awesome cake and cupcakes courtesy of Creative Cakes in Rockville, MD.

Jade was fascinated by the cake.
(This pic is too great not to repost... thanks Monica and Michelle!)

That bubble was almost large enough for Jade to float away in...

Really?  It doesn't look like you're not ticklish...

Unplanned activity... unravel the spool of ribbon and drag around house.

Making our own fairy wand...

Ta da!  The wand that took two days to complete.

It got loud for a moment... Lots of percussion...

Big Brother offers more assistance at the gift table.

Uncle demonstrating how TinkerBell can fly.

Tinker Bell's awe-inspiring flight... I think Daddy was the most impressed!

My baby and the twins.

Daddy... stop goofing off!

Family pic!

Lil Jay sat still long enough for a few pics... and of course for one with Auntie Meeks.

Silly girl =  Happy mama.

Two is a big deal!

Wind chimes and paper lanterns.

With our baby girl.

Enough said.