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.

Chemo Round 3... Not Just Yet, We Have a Party to Plan!

Jade walked into the hospital today like she owned the placed. Waving and saying hi to everyone.  Asking anybody who would listen for bubbles. Jumping on the first bike she saw and heading down the familiar halls. Aside from the little peach fuzz that covers her head and the central line, which was barely visible under today's outfit, you'd never know that this little ball of energy was waging an internal battle against leukemia.

Overall, the check-up went off without a hitch.  Her ANC is climbing, but wasn't high enough to perform the bone marrow biopsy or spinal tap.  (I'm taking that as good news because it means that we'll have at least another week at home with Jade!)  She is now scheduled for the biopsy on April 10th and for readmission on April 12th to begin Round 3.  Our prayer is that the bone marrow biopsy will show that the chemotherapy has been successful in continuing to keep Jade's marrow free of leukemia cells.

The doctors also gave us an overview of Round 3, or the beginning of the "intensification" rounds. Five day course of chemo (as opposed to the ten and eight day courses in Rounds 1 and 2). Three to four week recovery period. Higher doses of chemo drugs. Traditional eye drops and steroid eye drops every three hours.  A sleepless round, in other words, but necessary. Something like 90% of patients have a recurrence of AML within weeks or months if no further treatment is given beyond Round 2...

In the meantime, Shameika and I are figuring out how to transform my home into Pixie Hollow so Jade can celebrate her birthday as a fairy with her family (a lot of contact with a lot of people, especially children, is still not advisable at this point). I passed on a "birthday blow-out" for Jade's first birthday because I didn't think she needed it. Well, now we all need this celebration... so, bring it on.

"All you need is faith, trust, and a little bit of Pixie Dust." ~ Tinkerbell

An Anything But Quiet Weekend at Home

This photo only captures a glimpse of the tomfoolery that was our home this weekend.

Over the past three days, the barrettes and clips that Jade used in her hair just a few months ago became part of a new "do" for Mommy. We have jumped on the bed, painted, baked (if crescent rolls count), read Lil Bill books and from My Book of Bible Stories, followed Jade's hip-shaking lead in a dance, watched movies, stuck and unstuck stickers, played video games, put puzzles together, took puzzles apart... and put them back together.  Climbed up the stairs and scooted down on our bottoms. Told Jade to share with her brother. Told Lil Jay to share with his sister. Gotten stuck in Lil Jay's room (our doors expand in warm weather). Brought out the trusty air mattress so we could all sleep comfortably in the same room.

With the exception of Jade's taking her own blood pressure and temperature with her doctor kit (it's hard to go from having it taken every four hours to not at all), and our making sure she gets her oral meds (down to four this time), her IV med (just heparin), and central line dressing and cap change, it was almost like old times.  A part of me really has already accepted the antibiotics, antifungals, etc. as part of our new normal.  But I say almost because I know that I consciously appreciate these moments much more now and find myself running for a recorder when Jade is singing "tinkle tinkle little star," or a camera when Lil Jay and Jade are monkey- seeing and doing.

We will head back to the hospital on Tuesday for an out-patient check-up and possible bone marrow biopsy and spinal tap, which would officially be Day Zero of Round Three, if Jade's counts are high enough. But for now, we are enjoying every moment... and hoping we can keep up this momentum!