Day +171, BMT:: Love. Loss. Life.

Bubbles with Rachel. A birthday cupcake with Diana. A princess wagon ride with Maddison. Video games with Malik. A manicure with Miyah. A Halloween fright with Hayden. Waiting room antics with Samirah.

Many of Jade's friendships have been built on moments. Spontaneous. Fleeting. Innocent. Mundane moments, really, with the only kids outside of our family that Jade now identifies as friends. All kids she met on the oncology/hematology floor. All friends who made month-long hospital stays bearable, who even make long days at clinic something to look forward to. Friends we pray for. Friends we truly love.

One of those friends sweetly checked in on Jade during one of her four trips to the hospital this week.  (Jade has a pretty wicked cough that, along with a fever, prompted an unscheduled trip to the ER from 12am to 4am on Sunday, which was followed by scheduled photopheresis treatments and other follow-ups.) As we sat in a shared room in the Bone Marrow Transplant Clinic with the curtain drawn between us and another family, Jade's small frame shaking with each bout of coughing, Hayden asked in a voice almost smaller than Jade's, "Are you okay, Jade?" It was such a simple gesture, but so sweet, genuine...

We lost a friend last week. A beautiful little girl. I remember Jade standing shyly at Miyah's open door, eying all of her pretty pink stuff, waiting for the invitation that she would accept without hesitation. No encouragement needed... or waiting for my permission. I remember our fascination with Miyah's entrepreneurial spirit and the nail salon she set up for patients and staff. Remember when my friend painted my nails? Jade still talks about her friend doing her nails.  I remember not having to worry about keeping our neighbor up with midnight movie marathons because she was up too.  The girls had their transplants just weeks apart.

I can't help but hold Jade and Jaytoe a little closer. Day +171.  Thankful for life. For the gift of friendship. For Miyah, Arianna, Diana, Hayden, Maddison, Malik, Rachel, Samirah, Vanessa. Thankful for these angels, fighters, and survivors that Jade has called 'friend.' Thankful for being Jade's best friend. Her girlfriend. Her twin sister. At least that's what she says. Thankful for everyone that has been a friend to our family. And so very grateful for Jade's continued remission, her smile, her strength and humor through her continued, but winning, fight with chronic GVHD. For this holiday season. For every moment we have with her and for every moment we have with friends. Thankful for the bumps in the road. For still being on the road...  Happy Holidays, friends.  Wishing peace for you all!

Day +105, BMT :: Counting Days, Counting Blessings

100, 101, 102, 103, 104, 105...

Just counting days and counting blessings... We have been blessed with one month free of fevers, with 100+ days post-transplant, 200+ days since Jade's leukemia relapsed in March.

It's hard to believe that it has been a whole month since I've updated the blog. Entertaining Jade is exhausting, but tack on her medication and appointment schedules and Jaytoe's homework load and it is a wonder that we pull it off. We sure do miss the nurses and child life volunteers. Jade has been getting stronger and stronger each day, testing the limits of what she can do physically, celebrating everything from eating more solid foods and completing whole coloring books to conducting successful science experiments with big brother and finally sleeping through the night again without waking. Sleeping in her own bed in her own room will be cause for another celebration.

Day 100 is a BIG deal in post-transplant world.  It is a significant milestone that marks the passing of the most vulnerable time for transplant recipients. In the best case scenarios, the mask comes off at day 100, you begin to eat a regular diet, you venture out into public and attempt to reenter your (anything but) normal life.

Jade still has a few more weeks before the isolation restrictions will be lifted. For that to happen, the team will have to  completely wean her off the steroids that are helping keep her GVHD (graft versus host disease) in check and give Jade a special infusion of donor cells that have been training in the lab to fight specific viruses.  At that point, her immune system will be better equipped to fight off any viruses that she may come into contact with this season... Just in time for the holidays with family and friends. Jade says she might want a hot dog for Christmas. ;)

For now, we are at the hospital every week with scheduled appointments and treatments. Jade's light therapy treatments to fight the GVHD will continue for five to seven more months. At some point, they will also begin to treat Jade for iron overload, a common complication for people who receive dozens of blood transfusions over the course of treatment. But today, we are here for Jade's Day 100ish bone marrow biopsy -- praying that her bone marrow remains leukemia-free and is comprised of 100% donor cells. The road to recovery is a long one, but we thank God for firmly planting us on it and surrounding us with awesome friends and family.

Thank you for your continued encouragement and support, for your well-wishes and prayers for Jade and for a cure.

Day +67, BMT:: Still Brave, Still Strong

Five weeks inpatient for cord blood transplant. Two days at home. Two weeks inpatient for acute graft versus host disease. Two weeks at home. A trip to the E.R. and one week inpatient for liver damage.  Ten days at home... and counting.

Momma needs to summon some of that trademark Jade energy and sass, because this summer really tried to kick my butt!

I know that it's been nearly one month since I've updated the blog... not for want of things happening, but for want of energy.  We were really hit hard with the last post -- adenovirus, stage 3 graft versus host disease of the gut, and committing to an even longer treatment course that includes extracorporeal photopheresis (light therapy) to get and keep the GVHD under control.

Jade came home for an eventful two weeks. And literally the day after she came home, we lost power for about eight hours during a storm. While I was preoccupied with the battery life for the IV pump that Jade is connected to for 18 hours a day and how long could a closed refrigerator store medications at the appropriate temperature, the storm was flooding our basement.  A friend from church took us in without hesitation while the guys from FloodTech took care of the basement, rid it of the water that was certainly bacteria-filled and a potential hazard for an immunosuppressed child, and made our home safe for Jade to return to.  All the while, we continued to travel to the outpatient clinic three times a week for visits that lasted between four and nine hours.

Just as I was beginning to accept this schedule as our new reality and trying to wrap my head around how much more challenging it would be when Jaytoe headed back to school for the fifth grade, yellow eyes, dark urine, tummy pain, and loss of appetite prompted a frightening (for me), Sunday morning trip to the Emergency Room.  "Can they make my tummy better?," she asked. With an affirmative response, Jade was happy to go along for the ride and even afforded us several loud renditions of her Kidz Bop faves. Still brave.

All of a sudden, some of the numbers that we only followed peripherally were front and center.  Liver function tests showed Jade's AST level at 921; normal range is anywhere between 16 and 57.  Her ALT was 1,077, with normal being between 25 and 50. Jade was admitted to the hospital for liver damage. With round-the-clock full monitoring, regular glucose checks (which surprisingly have not evolved from the finger pricks I used to see my aunt give herself decades ago), increased hydration, removal of medicines from Jade's treatment plan that are known to be harsh on the liver, and God's grace, Jade's liver healed itself and its function was within normal range within a week... another homecoming. Still strong.

We have now been at home for ten days, Jaytoe has been a fifth grader for 14 days, the adenovirus?  gone as of last week's labwork, and we have readied ourselves for today's Day 60ish bone marrow biopsy.

Our prayer today is what it has been for the past couple of months -- that Jade's leukemia continue to be in remission, that her body continue to embrace the donor cells, that this family be imbued with strength, and that the cure for cancer be made plain.   

Thank you for continuing to lift Jade and our family up with your prayers, encouragement, and immeasurable kindness.

Day +29, BMT :: 100% DONOR!

Jade spent two full days at home before being readmitted to the hospital with fevers, rash, facial swelling that nearly shut her left eye, and the equivalent of a really bad sunburn, but her smile and laugh are as strong now as they have ever been! 

 

Why? Well, blood cultures show no infection, scans show no sign of damage to her major organs, and the chimerism (those specialized blood tests that Jade took just 20 days after her transplant) shows that HER BLOOD IS 100% DONOR CELLS! Her new cells have made themselves at home!!! Surely this news excuses the excessive exclamation points.

 

The hyperpigmentation that has transformed Jade's skin from head to toe to, as she describes it, "Daddy's skin," and the subsequent burning and peeling  is an effect of the chemotherapy she received one month ago and will resolve with time. 

 

But the symptoms that caused her to be readmitted to the hospital for the whole week are now being attributed to graft versus host disease (GVHD). That's when the new donor cells attack the host's (Jade's) organs or tissue because they see them as foreign. GVHD can be life-threatening when the donor cells attack vital organs, but Jade has a mild case. And a mild case is actually considered good; it's an indication that the new cells are fighters and would likely fight leukemia cells if they were to encounter any.

 

For now, Jade's GVHD will be treated with a low dose of steroids; we pray that contains it and resolves it!

Jade will head home again this weekend and return for an out-patient bone marrow biopsy on Monday to determine whether her leukemia is still in remission and confirm that her marrow is also 100% donor cells. 

 

Thank you for continuing to lift Jade up in prayer!  

 

http://www.facebook.com/superfriendsforjade

 

#smilingforme #bravestrongready #day29

Day +24, BMT :: Ready For Whatever Comes Along

Jade rocks her string of strength for
one last ride on the IV pole before going home.

We have seen the parade-like, end of treatment celebrations before. Participated in them even, cheering on other patients as they triumphantly, hesitantly leave the safety of the well-staffed, ultra-filtered, restricted unit...

There's nothing like being in it though and nothing to prepare you for the wave of emotions that drowns out and distorts everything around you.

After donning her Beads of Courage and patiently waiting to go home, Jade handed them off to Dad in exchange for her requisite sunglasses, high filtration mask, and tiara... She went out in style, leading the staff in a call and response of "I'm brave, I'm strong, I'm ready for whatever comes along," accompanied by clappers, bubbles, and drums per her request. Patients and families cheered along and waved from their rooms as Jade walked decisively toward the elevator.

Despite my tear-filled eyes and clumsy fingers, I managed to capture the latter portion of the Jade Parade leaving the BMT unit on Friday so that our family and Super Friends could share the moment with us.

How did we get here?

That moment when they tell
you you can leave IF you
produce $3k worth of medicine.

After beginning to prepare for a Monday, July 28th homecoming, the team asked us on Thursday if we could be ready for a Friday, July 25th discharge if Jade's blood counts and chemistry continued to improve. My instinctive response, "Absolutely!" Even if it meant I wouldn't have the weekend to do everything I imagined should be done before Jade came home.

In a flurry of phone calls and texts, generous gifts from friends and family, charitable discounts from vendors, endless encouragement, and unceasing prayers, carpets were steamed, house professionally cleaned, ducts sanitized, and - not without some necessary shifting - $3,400 of out-of-pocket prescription medications were picked up. All in less than 36 hours...

So, Jade is home!

With a stable echocardiogram, a platelet transfusion, a hemoglobin level of 10.3, an ANC over 2400, and an extra infusion of the neutrophil stimulant GCSF, Jade was discharged on Friday a little after 4:30pm to a much more comfortable isolation at home. (No public outings, no visitors.)

Sure, I find myself referring back to the discharge guidelines before we do anything other than turn on the TV -- One second, I'm not sure if we should play on the floor, open the sliding doors; eat avocados... Alerts and alarms chime frequently when a medicine is due or when the IV fluids need to be taken out of the refrigerator. Just 24 days after her transplant, we have a long way to go and will be followed very closely by the team til Day 100, the end of the period of highest risk for complications and mortality. After a quiet weekend at home, we will be back at the hospital tomorrow morning for the beginning of Jade's very regular follow-up clinic visits.

But, for now we are just enjoying watching Jade rebuild her strength and stamina, witnessing that hot/cold relationship that siblings share -- especially when it comes to matters of the Wii or movie selection -- and just being under the same roof, sharing meals as a family.

We have been blessed with extraordinary family and friends, some of whom we have known since we were children ourselves, some of whom we met along this journey, and some of whom we may never meet. Thank you for helping with everything from meals and rides to vendor scheduling and caregiving for our amazing son. Thank you for continuing to stand with us, encourage us and pray for us every step along the way. 

MUCH LOVE!

#superfriendsforjade

The Wait is Over

Jade snapped selfies as we reviewed roughly 100 pages of documentation and participated in a three hour meeting with the Bone Marrow Transplant team on Thursday. All of her pre-transplant work-up tests and scans are back and thankfully they look good overall.  Dental exam showed no infections or disease. All of the blood tests were unremarkable. The GFR showed great kidney function. The bone marrow biopsy and lumbar puncture showed no evidence of disease in her bone marrow or her spinal fluid!! Two potential issues did arise from the cardio scans and the CT.  The cardio scans showed an ever so slight increase in left ventricle size and heart rate, a potential sign of stress or injury to the heart from previous rounds of chemotherapy. The CT showed compression fractures in Jade's spine, a sign of toxicity in the bones - another effect from the chemotherapy treatment.

While we were assured that these are not currently major concerns, it was significant enough for the team to decide to select an eight-day transplant conditioning regimen that consists of bisulfan and cyclophosphamide  and is "gentler" on the heart and bones (i.e. no total body irradiation). It also reaffirmed the position of not doing additional rounds of chemotherapy so that we could wait for an adult donor match to be identified.  Jade is strong and looks great, but chemotherapy is heavy stuff and will take its toll on her body. The transplant conditioning regimen will begin on Monday, June 23rd and be followed by a stem cell transplant using umbilical cord blood -- the best identified match Jade has to date -- on July 3rd. 

So, we brought Jade to the BMT clinic on Friday for her first infusion of palifermin, one of many medications Jade will be taking to prevent or curb some of the anticipated side effects of this treatment course. (Palifermin builds up the lining in the mouth and along the gastro-instestinal tract to prevent sores from developing.) We have truly cherished these past two weeks at home together as a family - not taking for granted the luxury of sleeping in the same bed together, sleeping in period, conspiring to ambush Daddy, waking up in a house that looks "lived in" by children, stepping outside and breathing in fresh air, running on bare feet, worshiping with friends... For now, we're making it our business to have one heck of a weekend before heading back to the hospital for what I pray will be an uneventful, yet unimaginable, experience.

Thank you for your continued prayers for Jade's complete healing and happiness, for our family, and for a cure. 

Let It Go... Locks of Love

I've been writing thank yous when I can, but the words never seem to capture just how awed we've been by your support nor the magnitude of our appreciation. Yes, to some extent, we all expect family and friends to rally in times of need. But to have the children of my sister's colleagues send hand-made get well cards to Jade, or to learn from a neighbor that, in our absence, she has literally just been placing her hands on the side of our house - praying for us, or for notes, packages, and words of encouragement to literally come from around the globe... you don't expect that. I didn't expect that.

So, today I walked into a salon (the likes of which have not seen me in an unspeakable number of years) and cut off 18 inches (or so) of hair to donate to Locks of Love, a worthy organization that provides hairpieces to children under the age of 21 who are suffering from long-term medical hair loss from any diagnosis - as a tribute to Jade and all of you who are rooting for her.

Jade's at an age where the loss of her hair hasn't caused her to skip a beat; but there are older kids, children we see on the unit or teens we see in clinic, for whom the hair loss is a game changer.  Maybe, just maybe, these four ponytails will be a blessing of restored confidence for the young one receives it. This is the least I could do. I have been asking and hoping for so much from so many for Jade -- a bone marrow match, blood, prayers, encouragement. I thought that I was giving all that I had, that after all we're doing -- for Jade, Jaytoe; to preserve our family -- that there was nothing left. But, there is much more that I have to give.

Sure, Jade wanted my "old hairstyle back" when she first saw me.  But when I explained that it might make a big kid, who had lost their hair, happy and that it was actually my Iridessa hair (of Disney Fairy fame), she was on board.

Thank you for your continued prayers for Jade and all those affected by cancer. 

A Room Without A Roof (Happy!)

If you were wondering what a room without a roof looks like... it's this!

The Minimal Residual Disease test, which looks for even the smallest trace of cancer, is back and there is NO evidence of leukemia in Jade's bone marrow after one round of chemo.

That potential hurdle of Jade not being eligible for a transplant because the leukemia is too prevalent in her body - GONE! We celebrated by rocking out to Pharrell's Happy, running around the yard a few times - picking a few dandelions and wishing on them, and even riding our bikes to the end of the block. (Yes, we were just showing off at that point.) Jade has not been this  energetic and uninhibited for nearly six months. THIS is the Jade I know.  

Oh, yeah. Apparently Jade is going to have curly red hair and design video games when she grows up. Her unprompted words.

Thanks for checking in on Jade.  Thank you for your continued prayers as we head back to the hospital on Monday for a second round of chemo to make sure the leukemia stays gone while we await news of a suitable match for Jade's bone marrow transplant.

Happy IS Healthy!

If Jade's at home, she is sans pants 90 percent
of the time... Not sure why.

We have been so thankful for these four fever-free, glorious days at home of -- hiding and seeking, painting, wii fitting, line dancing, perfecting our silly faces, waking up on our own volition, catching up on Saturday morning cartoons, reading stories with big brother and embellishing on them afterwards to make our own, bonding with new pet fish.  Jade's bald head and central line bandaging are the only tell-tale signs of the leukemia that she is fighting once again. She has been bounding through the house after her brother (much to his dismay), ambushing Mommy with big brother and snoballs in hand, and doing the cha-cha slide like there's no tomorrow.

She is so happy.
And when she's happy, we are happy.
And happy is healthy.

I was reminded of this by another brave family whose five-year-old is beginning her third battle with cancer. Sometimes I lose sight of that and obsess about numbers and counts.  But Jade's happiness really is more important; a good report from the lab is comforting, but Jade's liveliness, her spirit is what really energizes us... And we have been plenty energized these past few days!

Armed with the knowledge from the doctors that treating relapsed AML is more difficult than treating regular AML, we went back to CNMC today for a scheduled lumbar puncture (spinal tap) with intrathecal chemotherapy, and bone marrow biopsy and aspiration. Still hopeful. Still faithful.  The lumbar puncture tests Jade's spinal fluid to determine if the leukemia is present there; it also gives an opportunity to inject "just-in-case" chemo to prevent or kill any leukemia that might be present.  Jade's lumbar punctures have always been negative, even back in 2012, so we pray this continues to be the case. The bone marrow biopsy will let us know how effective the chemo has been.  The preliminary results from the biopsy show 2% blasts in her bone marrow.  Blasts are immature, blood-forming cells; anything less than 5% is considered normal.   This is reason to celebrate, but we still need to wait up to 48 hours for the more detailed analysis of the blasts to determine whether they are normal or leukemic.

Lord, let these 2% blasts be normal cells, the kind that are found in recovering bone marrow. That was my prayer when we got the results, will be my prayer tonight, and hopefully yours too.  Thanks for all of your support and encouragement... Off to enjoy more time with the kiddies -- we are scheduled to be together until Monday (after Mother's Day!!), when Jade will be readmitted for the second round of chemo.  

Today's Counts:
Hemoglobin: 9.4
Platelets: 171
ANC: 930 

Saturday Morning Cartooning

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.

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!

Day 26, Chemo Round 2 :: Stubborn ANC

After discharge, we can expect to enjoy a 7-10 day break at home before being readmitted to begin the next course of chemo...  The theory I'm currently operating on is that Jade is willfully stalling her recovery to ensure that she'll be at home on April 6th to celebrate her second birthday. Apparently, she has done the math.  Jade's ANC stubbornly remained at 39 today.







Pictured left: Jade in her "Hello, Spring!" outfit... no, we did not get the memo about the freezing temperatures outside.

Day 14, Chemo Round 2

Flying the coop...

It wasn't even two years ago when Jade was born and we brought her home from Civista Medical Center. It was unseasonably warm... actually it was hot. We pulled into the driveway, hit the garage door opener, and, with Jade tucked safely in her car seat, started to walk through the garage into the house.  I was tired, to say the least, anxious about our new baby, but super excited to have my mom and father there to help us welcome Baby Jade home.  I thought we were just going to stroll in; it even looked like my mom was opening the door for us. I saw her head come around the cracked door, and then I heard, "You better bring that baby through the front door!"

I thought it was sweet and ridiculous all at the same time, but I turned around to walk out of the garage -- past the bikes and scooters, the boxes and tools -- and to the front door. I carried Jade across the threshold. "Welcome home."

I got choked up driving in to the office one morning last month thinking about what Jade's first homecoming after her leukemia diagnosis would be like. I remembered bringing her home that very first time after she was born. She was coming home through the front door after recovering from chemo... no doubt in my mind. I got choked up again this evening as I drove home with Lil Jay, who wishes "hospitals would change the rules so brothers can stay overnight with parents," and thought about bringing Jade home again and living together as a complete family... Today was another day at an ANC of 0.. but thank God one more day closer to recovery!

Day 12, Chemo Round 2

All dressed up, sticker purse and all,
with nowhere to go. This room is our
friend today, Ms. ANC = 0!

So, Jade's ANC finally nadired today, or reached zero. This means the chemo succeeded in destroying any leukemic cells and all the good cells that make up her immune system.  During round one, it was a long twenty days before her counts recovered from zero and she was able to come home for a while. Vomiting, diarrhea, and some loss of appetite prompted the insertion of a nasogastric feeding tube, but those were the largest concerns during the first round's recovery -- I'll take those any day over some of the more frightening complications (fever, infection, etc.).  I'm prayerful that recovery this round is just as uneventful.

As we "holed up" in our room today (something about hearing she has no capacity to fight off infection right now makes me less enthusiastic about our walks around the unit or trips to the playroom and art room), I had some time to really reflect on how amazingly blessed we have been. Certainly, this is a rough road we are traveling, but we have been able to be with Jade every day and every step of the way.  There are other families on the unit that are separated from their children by work schedules, by oceans even. But we've been able to be with our girl every day.  We thank God for that and for placing such amazing family, friends and colleagues, newfound friends, and medical professionals who have been there all along -- praying and rooting for Jade and offering us support we didn't even anticipate needing to help make that possible.

The most that I've cooked, like really cooked from "scratch," has been pancakes, turkey bacon, and eggs since Jade was hospitalized. Breakfast food is really all I have time to prepare. Hospital food and fast food were a regular supplement, but we have been blessed with delivered groceries and home-cooked meals prepared by friends (which really came in handy tonight when Lil Jay looked at me at 9:45pm as I'm trying to get him to bed and said, "But I didn't even eat yet, Mommy.")

Keeping Lil Jay engaged during out-of-school time used to be a cinch.  Not so much anymore, but again, family and friends have stepped up tremendously.  A couple of weeks ago, my brother drove down from Boston to drop off his kids, the eldest of whom is 17, to keep Lil Jay company.  He dropped them off on Sunday, headed back to Boston on Monday, and drove back down on Friday to pick them up. He left on Sunday morning, but not before cooking enough food for the week.  Amma and Auntie Shameika literally dropped everything to be here within hours of getting the call that the doctors suspected Jade had leukemia... and have been such a constant presence for both of the children, but especially for Lil Jay - helping facilitate after-school pick-ups, homework completion, etc... Not to mention Jessica, an amazingly generous young woman I met late last year when we were recognized as part of Forty Under 40 young leaders in the county... she teaches culture through creative arts and contacted me just tonight and offering to keep Jade and Lil Jay company and lead them in some fun activities.

I didn't know they boxed fun...
But they do! It comes in care packages.

Never thought I would need to create another safe space, or home away from home, for Jade.  But we have.  We've made our hospital room as homey (sp?) as possible... It's actually more like a playroom, but Jade wouldn't have it any other way.  Dr. Brandi (Shameika's line sister) dropped off a kid's medical kit shortly after Jade's diagnosis so that Jade would become familiar with and less afraid of all the instruments that were being used on her.  Auntie Taniqua and Aisha hand-delivered Jade's first tiara and feather boa. The families from Jade's childcare sent an amazing basket with Tinkerbell Pajamas, books, music, snacks, etc. And Mama Gayle and Nina sent unbelievable care packages that... well, suffice it to say that Jade's sticker collection now puts to shame the Art Room resources!

Yes, Lil Jay. You are
super in your "new" jacket.

So many other acts of generosity and compassion to help us keep all the balls as we still come to terms with a disease that is so unpredictable, juggle reduced-work schedules, and care for Jade and Jaytoe -- and somewhere in there our marriage. Dr. Brandi's mom coming to sit with an anxious me during one of Jade's first spinal taps when Dad had to work. Your willing ears for my tearful calls.  Your constant prayers, words of encouragement, facebook messages. Gas cards, teas, hand-me downs for Lil Jay so we don't have to worry about a spring/summer wardrobe for our growing boy, the list goes on.

We love you all and thank God for placing you in Jade's life... in our lives. Jade will beat this.