Ups and Downs :: First Week Post-Transplant

Day +1. A top hat for Jade before she had
to use it daily for its intended purpose.

Mooooom! 
There's nothing that will end the semi-sleep state of a watchful parent in a hospital more abruptly than your child's voice calling your name.
"I'm right here, Jade."
Before I can get my litany of questions out that usually follow when she calls out in the middle of the night -- Do you need to use the potty? Are you warm? Does anything hurt? Are you thirsty? Did you have a bad dream? -- Jade says,  I love you, and nods off to sleep again. 

Thursday, Day +7, seven days after Jade's cord blood transplant, and by all accounts from the team, Jade is doing fantastically for where she is in transplant recovery. It will be at least another two weeks before we see signs of her new cells making their home in her body, growing, and multiplying.

Jade enjoyed four days of post-transplant, symptom-free bliss -- taking in July 4th fireworks with a view of the Washington Monument from her room, celebrating big brother's birthday with a song and lollipops in lieu of cake and candles, dancing her heart out, and attempting to best us all on Wipe Out for the Wii -- imparting Wonder Jade wisdom when a nurse asked if she was winning and replying, It's not about winning.
 

Then, the myriad symptoms that they warn you about when your child is undergoing cancer treatment began to surface.  Mouth sores. Nausea and vomiting. High blood pressure. Fever. Low blood counts. Fatigue. Loss of appetite.

The mouth sores came first.  Jade woke up on Day +4 and said that something was poking out in her mouth. A quick glance inside and I immediately saw what she was talking about. The medicines she is taking is only to lessen the severity of the sores that appear in the mouth and all along the digestive tract as a result of the high-dose chemotherapy.  Magic mouthwash was ordered for some relief.

The high blood pressures came next.  They are an expected effect of one of the immunosuppressant medicines that Jade is on.  So, she was prescribed another medicine to help bring her blood pressure down. 

By the end of Day +5, Jade's energy level was really suffering. She rested for the majority of the day because of the low-grade fever, we thought.  But after her temperature came down, she still wasn't interested in dancing. Or walking. Or eating. Or doing much of anything. A blood count showed low hemoglobin levels (7.2), so she received a transfusion that evening.

Even after the transfusion, and a nice jump in her hemoglobin levels, Jade slept in until noon on Day +6 and took a long nap in the late afternoon. She even told a volunteer after only a few minutes of playing with her doll house that she was finished! Jade typically requests that a volunteer come play with her daily and when they arrive she charms them into staying for almost an hour.

Jade's appetite really tanked as well over the past few days, with her eating only a few bites or spoonfuls for entire days.  We are attributing that to the ongoing nausea and the sores that are in her mouth and likely lining her GI tract.  Nutrition concerns and Jade having enough energy to recover from transplant prompted three traumatic attempts to place a nasogastric feeding tube (NG tube). The first two attempts to place the NG tube took place shortly after noon on Day +6 and were nothing short of disastrous. 

Day +6. Not happy about this NG tube business.

Despite the pre-education and play with child life, despite the reassurance of mommy's hug, despite pre-medication, the first two attempts ended with Jade and Mommy soaked in vomit and tears. The next attempt came about 9 hours later. While Jade was on board, in theory anyway. The idea of not having to taste any oral medicines, which would be able to be given through the NG tube, really appealed to her. Her body, however, was not. Her gag reflex kicked in again. Vomit once again covered everything, though we were better prepared this time with gowns, towels, etc. Surprisingly, the nurse was able to insert the majority of the NG tube and secure it... Jade however continued to gag and cough. On exam, the nurse couldn't verify placement in the stomach. So after a seemingly tense exchange between X-ray and the night doc about Jade requiring a bedside x-ray instead of being wheeled thru the hospital to Radiology, Jade had an x-ray done in her room that showed the NG tube placement was indeed unsuccessful. The nurse suspected the tube had coiled around itself in Jade's esophagus. The tube was removed quickly and without incident.

Day +7. Tea anyone?

Thankfully, her energy and appetite rebounded some on Day +7.  After winning three rounds of Hospital Bingo, dialing in to Clown TV and telling two jokes, Jade even called in a nurse for an abbreviated dance party. Her stamina is not what it was.  She settled down for a tea party, with big brother serving up delicious cups of tea with "dots of milk." And she is, in fact, working on her second hot dog of the day as I type this post. Not my first choice for food selection, but she's eating!
  
As always, thank you for your amazing support and for continuing to check in on Jade and to keep her in your prayers.

www.facebook.com/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. 

Day 29, Chemo Round 1 :: She Called Me Jade, But I'm Wonder Woman

To the amazement of some of the younger kids on the unit and the entertainment of the staff, Jade flew through the halls today after waking up with an insatiable appetite and enough energy for everyone on the floor. She usually enjoys long baths, but couldn't wait to get out of the tub this morning.  The order for contact isolation was lifted last night and, with fevers and tummy issues a thing of the past, Jade was eager to see everyone who "missed her"  in the art room, in the play room, in every room. She would, however, only respond to "Wonder Woman."

Overall, it was a quiet day of waiting for Jade's ANC to recover -- aside from the shrieking from our room that could be heard around the unit when Jade and Jaytoe received a package with the largest Princess Lego set I've ever seen and an incredible illusions set. Thank you to the mysterious gift-giver; it was one of those unadulterated moments of excitement that kids seem to have a monopoly on.:)

Thank you for checking in on Jade. Thank you for your prayers and support. 

Today's Counts:
Hemoglobin: 9.2 (up from yesterday's 8.8... first time we've seen this move up without a transfusion!)
Platelets: 42 (down from 56)
ANC: 30
Monocytes: 7%

Day 27, Chemo Round 1 :: Fever, Be Gone!

Jade shakes up the dice while
Lil Jay contemplates his empire-building strategy.

The weekend started off rocky, but ended gloriously.  The fevers that surfaced on Thursday decided to stick around for most of the weekend and asked vomiting and diarrhea to tag along.  This landed Jade on contact isolation, which meant that she remained confined to her room and all personnel who entered had to put on gowns, masks, and gloves before crossing the threshold - at first, an upsetting sight for Jade. It also meant blood cultures and stool samples, as well as Jade's first wheelchair ride down to X-Ray. Thankfully, her x-ray was "unremarkable" - the only context in which Jade will ever be described as such, I declare. And the preliminary reads of the blood cultures and stool samples that were taken are negative for bacterial growth. So, Jade is likely just experiencing side effects of one (or some) of the medications that she is on.

So, where is the glory referred to in the opening sentence? Today's ANC: 30!  Let's pray it's all up from here.

But, the entire weekend was truly glory-filled. When Friday morning rolled around, we realized that we didn't have solid overnight plans in place for Lil Jay while Dad worked a 7-7 shift at his hospital. I sent out a few messages and more quickly than I expected had arranged for Lil Jay to spend Friday night at a friend/classmate's home. He was super excited to be going to a "sleepover."  (Believe it or not, this was only his second time sleeping over a friend's home.)  He stayed up late and ended up spending most of Saturday with his friend... and away from the hospital. It was such a huge help, and with Jade's tummy issues, it was a relief for me.  My thank yous were met with this message from Ms. Ebony, "We were honored to be able to assist your family. Thank YOU for the opportunity."


On Sunday morning at 6am, while Jade and I -- and probably most of us -- were still asleep, our friends Michele and Monica came over so Lil Jay could continue to slumber while Dad went off to work. When we asked this seemingly huge favor, they let us know, "This is not a favor... we're friends." They headed over to the hospital with Lil Jay in tow (with the added drama of an emergency bathroom stop), and entertained the kids in Jade's room while I left the floor and ate lunch in the cafeteria. When  I got back, they gently insisted that I get out of the hospital for some fresh air, which I hadn't done for a week, and enjoy the weather. With Jade in playful spirits and her fever under control, I checked in with her nurse and ran home to straighten up Lil Jay's room and did a load of laundry so he could start the school week off on the right foot. Just wanted to do something for him other than supervise homework completion at the hospital. Then I even took a walk around a pond in our community and grabbed a slice of cake from a bakery. They don't seem to offer desserts in the hospital anymore, with good reason, I'm sure. I got back to Jade's room feeling like a new person... and just in time for an explosive poop.

We are so blessed to have people like you in our lives to help us navigate this storm.  Thank you for your continued prayers and support.

Today's Counts:
Hemoglobin: 9.4
Platelets: 37
ANC: 30

Day 21, Chemo Round 1:: Looking Up

"Grandma is gonna think we're bunnies,"
laughed Jade.

Jade weighed in at 14.9kg (32.8 pounds) this morning, which means she has regained most of the weight that she lost immediately after being admitted to the hospital. Yay! The dietician stopped by and proclaimed that Jade is the poster child for the appetite stimulant she is taking.  But, I like to think that it's all the food that has been selected, made, and packaged with love just for her (and us) over the past couple of weeks. Thank you to Pastor Greg and Ms. Joann for our delicious Easter Sunday meal.  It was also today's lunch!


Jade's heart rate is still higher than the doctors would like to see it though.  It's been hanging around in the high 140s - 160s  for the past few days.  With no fever or any other symptoms of concern, the doctors are now thinking dehydration... So, that means she'll be hooked back up to IV fluids overnight to see if that helps bring it down. I hope that does the trick. I am not interested in this being one of the less common side effects of one of the chemotherapy agents that Jade received.  (Because of daunorubicin's potential to affect the heart, Jade had to have an echocardiogram before treatment started and be "cleared" to take this particular medicine.  It showed her heart to still be healthy and strong, even after receiving a form of this medicine during her 2012 treatment course.)

"I'm doing my work too, Mommy!"

Otherwise, today was a pretty low-key day. Jade and Jaytoe got to spend the entire day together -- at the hospital, but otherwise just like they used to when school was out.  They played surprisingly well for most of those twelve hours. Believe it or not, they even played a few rounds of hide-and-seek.  In Jade's hospital room. But there are only so many chairs, doors, and curtains that one can hide behind in a solitary room. So, they also visited the art room, painted, watched a movie, blew bubbles, walked/ran the halls with a volunteer, and settled down and did some work together toward the end of the day. (Jade insisted on getting a packet of work when I insisted that he finish up his extra-credit Spring Break packet.)

She was sad to see her brother go and "missed" him just moments after he left to go home with Daddy and get ready for his first day of school after Spring Break.

Thank you for your encouragement, your vigilance, and continued prayers. 

Today's Counts
Hemoglobin: 8.6 (same as yesterday... I sure hope this is a sign that her system is about to recover!)
Platelets: 34 (down from yesterday's 86... not sure that 86 was accurate after all)
ANC: 0
Monocytes: 0

Day 20, Chemo Round 1 :: Family Ties

Wagon ride and camping out for the Treat Cart.

 Please excuse the gushing that follows.  I miss my sister. The kids miss their Auntie.

Auntie Shameika, my twin sister, has always been amazing. But as we've grown older, she has kept  pushing the upper limits on just how awesome a sister/friend/aunt can be. This is the same sister who told me, "Hold on! I'm coming," when we called to let her know I had gone into labor with my first child ten years ago.  She quite literally hopped on the first bus out of New York so that she could meet her nephew. The next day, not wanting to infringe on our first morning as new parents, she declined our offer to pick her up and instead walked two miles from our home to the hospital in 90+ degree weather to visit with us and her nephew. She was a sight to behold. 

She has been even more present and supportive throughout Jade's first course of treatment and now as she starts on her second course of treatment for leukemia. She is my shoulder to cry on, my ear without judgement, my advisor without pressure.  When I decided to have a small birthday celebration for Jade at home before she was admitted to the hospital, her response to whether she would be able to make it down from New York with just two days notice: "Is the sky up?" She showed up with hand-made cards, well wishes, and toys from some of her colleagues and their children.

The following week, she made the trip back down to help with getting Little Jay to and from school and to the hospital to see his sister. She actually "loved the excitement of the morning bus rush." When my car broke down, she left hers here for me to use and took a train back to New York.

Then, when my oven started acting strangely, did she travel from NY with a spare toaster oven in her lap on the bus (because her car was in DC with me)? Yes, she did. And, yes. Another sight to behold.

For Little Jay's entire spring break, she kept him engaged and staved off any disappointment of the postponement of Jade's Make-A-Wish trip to Disney, which had been scheduled for last week. She kept him busy with trips to Toys "R" Us, Barnes & Noble, the International Spy Museum, the National Harbor, Chick-Fil-A, rock wall climbing, Port Discovery, and a speedboat tour of Baltimore's Inner Harbor. Each afternoon ended with a visit to the hospital, where we could all enjoy each other and share a dance, a laugh, a movie, a meal, and some homemade goodie that Auntie brought.

A bashful Jade holding her
Easter basket. 

On Easter Sunday, she swapped places with me so that I could take Little Jay to celebrate Easter with our church family. She graciously took Jade -- in her medical mask and Easter dress -- to Mass here in the hospital's chapel.  Upon returning to her room after Mass, an Easter basket was delivered. Jade remarked, "I was dreaming of this." Sweet, sweet girl.

Thank you, Shameika.  Thank you, everyone, for your continued prayers, words of encouragement, and acts of generosity.  

Today's Counts
Hemoglobin: 8.6 (down slightly from 9.1)
Platelets: 87 (up from yesterday's measly 4 -- thanks to a midnight transfusion)
ANC: 0
Monocytes: 0

Day 17, Chemo Round 1 :: Overheard

Me: What's the hardest part of being a big brother?
Little Jay: Trying to protect my sister.
Me: What's the best part of being a big brother?
Little Jay: Protecting my sister.

LOVE. THESE. KIDS.

Other than having gems of conversations like these with the kids, it was a relatively quiet day. We ended up not meeting the transplant team today, so we spent most of the time wandering the halls of the unit from Jade's room to the art room, where she painted and puppeteered. She is so full of life -- she has been without a nap for the whole week and today was no exception. 

By bedtime, however, her pulse was accelerated and she was running a low-grade fever. Fever is one of the potential side effects of the GCSF that Jade is taking to stimulate neutrophil growth and the recovery of her ANC.  Fever can also be a sign of infection that Jade's immune system could potentially not be able to fight. The nurse immediately reminded me that if her temp did not drop within an hour, they would have to draw blood cultures to try to identify the cause of the fever, replace the caps on her broviac to reduce any bacteria or germs that may be present, and put Jade on IV antibiotics and contact isolation for at least 24 hours for her safety and that of the other children on the floor. Luckily, Jade's temperature dropped just enough within an hour to avoid this. Yes. As a matter of fact, I did strip her pajamas off, lower the room temperature, give her something cold to drink, and say a prayer.  She toed the fever line for most of the night, accounting for my wakefulness and 2am typing of this post.

As always, thank you for keeping Jade in your prayers. 

Today's Counts
Hemoglobin: 9.8 (down from yesterday's 10.5)
Platelets: 22 (down from yesterday's 34)
ANC: 0
Monocytes: 0

Day 16, Chemo Round 1 :: Lemonade

At least one of us is too big to be in this wagon...

Being tethered to her IV pole for the four-hour GCSF infusion today didn't curb Jade's good spirits or activity levels. Instead, she firmly planted her feet on the base of the IV pole, pointed in the direction toward the art room, futilely asked me to go fast, and held on for dear life. When life gives you lemons... 

I'm not sure where Jade gets this thrill-seeking and fearlessness from, but I pray that this spirit of hers will help her thrive -- especially in the months ahead. Before the infusion was complete, we had made several laps around the unit, a trip to the play room to borrow a board game, and two lengthy visits to the art room to paint, play with puppets, and create with pipe cleaners...

And the antics only increased once her brother arrived and she was disconnected from the IV pole.  There was a lot of dancing. You'll have to ask them to demonstrate their new dance - the sweaty leg (I think we may have Auntie Shameika to thank for that name). Multiple attempts to perfect her tree pose. Our budding yogi. Piercing shrieks when toes were nibbled by wind-up bunnies and chicks. Thanks to Ms. Eloise and Ms. Corrina. And boisterous anticipation of the Wednesday-night treat cart -- which included big brother zipping Jade in a wagon through the empty corridors and ultimately camping out in the hallway outside of Jade's room. Yes, my kids know the schedule... Wednesday night - treat cart. Thursday at 2pm - Hospital BINGO.

The fellow who has been working with Jade since 2012 stopped by in the midst of all of this to check in on Jade. I asked about the impact of the GCSF on Jade's recovery and she let us know that we still have at least another week before they anticipate Jade's ANC being high enough to take a break and go home for a week or so. She also informed us that we would be meeting the bone marrow transplant team tomorrow and sitting down with them sometime next week to review in detail the options (conditioning regimens, donor bone marrow vs. blood stem cells, etc.) available to Jade. There is so much that I don't know, so many statistics swirling around in my head... and that's frightening... just so desperately want for us to have many more healthy and happy years ahead of us with our brave girl!

Thank you for your continued prayers and support.

Today's Counts
Hemoglobin: 10.5 (holding steady; yesterday was 10.6)
Platelets: 34 (down from yesterday's 51)
ANC: 0
Monocytes: 0

Day 13, Chemo Round 1 :: A Great Support System

Those beautiful brown eyes are open! There was just too much excitement going on this weekend for Jade to keep them closed I suppose.

The PTO and Friends from Little Jay's school delivered an awesome care package on Friday -- stuffed with Angry Birds of all varieties, Doc McStuffins and Sophia the First puzzles and activity books to help Jade stay busy, snacks, and encouraging words for us all. Jade took a peek at in on Friday, but it wasn't really until Sunday that she feasted her eyes on it!

On Saturday, while Jade rode through the halls singing some of her faves, our good friends Michelle and Monica helped celebrate Little Jay's awesomeness (and straight A third quarter report card) with a night on the town.  Red Robin and Sweet Frog, while definitely highlights of Lil Jay's "date," may have been eclipsed by a stop at Target.  At the end of the night, he asked "Do I have a girlfriend, Mommy?"

On Sunday, we enjoyed a delicious meal prepared to Little Jay's specifications by the kids' Sunday School Teacher, Ms. Marsha. It was right on time too!  Jade has lost a little over two pounds since her relapse.  An appetite stimulant was added to her daily medications this weekend and we are hopeful that -- combined with good eating -- it will be enough to completely avoid talks of feeding tubes, etc.

Thank you all for your encouragement, support, and continued prayers for Jade's complete healing and for our family.  A special thank you to Ms. Ebony, Rose Valley PTO, Ms. Michelle, Ms. Monica, and Ms. Marsha for "showing up" this weekend. We will beat this. 

Day 10, Chemo Round 1 :: B Positive

So, today wasn't a great day for Jade; she refused to open her eyes because they hurt, slept for the majority of the day with a cool washcloth across her eyes, and required a transfusion of B+ blood due to her low hemoglobin levels and uncharacteristic lack of energy. We're not certain what's going on with her eyes.  Maybe it's something as simple as springtime allergies? Or maybe the eye drops, which were discontinued the standard 48 hours after her last chemo infusion, ended too quickly for Jade? The doctors have reordered the eyedrops to see if that helps.  The screams from our room at the mere mention of eyedrops were a certain indicator that they just might not go over too well... 

But, Jade did still manage to drink more than 30 ounces of fluids so she doesn't have to be tethered to IV fluids round-the-clock. And we kept the mood light and playful.  I surprised Little Jay with an early pick-up from school. (What kid doesn't like being called to the office for early dismissal?) We returned just in time for Hospital Bingo.  Grandma had just set up our Bingo cards and began marking them like we were in a Bingo Hall somewhere, unaware that the kid's protocol is one Bingo card at a time to be played consecutively, not concurrently.  We got it together though -- with a lot of help and enthusiasm from Little Jay -- and squeezed out a win.  Little Jay was super excited because he "never wins Bingo during indoor recess;" Jade was surprised to learn that she could win even in her sleep!  We ended the day with a literal spin around the unit; Dad pushed Jade around the unit in an office chair -- closed eyes and all -- much to her delight.

Thanks for checking in on Jade and keeping her in your prayers. 




 

Day 7, Chemo Round 1 :: Surprise :) Surprise :/

I worry a lot.  For the obvious, regarding Jade's health.  But also for her big brother.  Over the past week, Little Jay has made surprising comments about feeling "guilty" for Jade's being sick.  Like it was somehow his fault.  He's remarked on all the "quality time" that I am spending with Jade.  And even how Jade is my number one child and he is my number two.  Nothing about this is easy, but trying to make sense of this as a nine-year-old boy confounds me. Hearing him articulate these kinds of feelings is heartbreaking. And I can only try to reassure him that he is an awesome son AND big brother, let him know that he still has my attention and love as much as ever, and make sure that he is surrounded by people who love him when I'm not around.

With my mom and sister in town and Jade in good spirits with the chemo infusions completed for this round, I decided to sneak away from the hospital for an hour or so to surprise Little Jay after school, indulge in a post-school pizza, and bring him to the hospital to see his sister and complete his homework... Well, surprised he was! Just a little over a week ago, my meeting him at the bus stop seemed like just another routine. Now, his toothy grin, bewildered eyes, and warm embrace reminded me of just how much these moments mean.

Well, I didn't know it then, but we were both in for another surprise.  On our way to the hospital, and less than a mile from home, my car broke down.  Flashing check engine light. Shaky car. Little power... Then an hour and a half of waiting for a tow truck that didn't show. Thankfully, Auntie Shameika is in town and was able to come to the rescue and get us to the hospital in time for dinner.

Jade had a good time with Grandma and the volunteer who stopped by and played the Wii  with her, but she did let me know about myself.  "Mommy, you said you were going to take a little time.  But you took a long time." That's my girl.   

Thank you for every prayer and positive thought sent our way.

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.

Day 9, Chemo Round 2 :: Brotherly Love

This morning, when I asked Little Jay about his day at school yesterday, he told me that he was sad because he wanted to see his sister.  He spoke with his guidance teacher, Ms. Jackson, and she helped him feel better.  He worked on an art project for Jade about why she's in the hospital.  The red circles are labeled as red blood cells, the white circles as white blood cells, the exes as leukemia, and the orange rectangles as medicine. She can come home when all the exes are gone. As much time as he has spent in the hospital (I think there have only been three days that he hasn't visited Jade), it shouldn't surprise me how much he understands what's going on... but it does sometimes.  He's a little sponge.


I'm glad that he has people all around him -- at school, at home, in the hospital -- that he feels comfortable talking to about how he's feeling.  He has definitely come a long way since Jade's first few weeks at the hospital.  While there have definitely been some regressions in terms of some of Little Jay's behaviors, he has made great progress with transitions and expressing  his feelings and what's on his mind. There are less tearful, fall-out-on-the-floor breakdowns when it's time to say goodbye (on his part and ours), and he lets us know when he's thinking about her, ("Mommy, I want Jade to live with us," one night as I tucked him in at home.)  The Child Life Specialist is his favorite staff person at the hospital, hands-down. She helped us explain Jade's leukemia to him in an age-appropriate way, but also helped us make sure he still feels like he's special and his needs are being met. (She's also got the hook-up with keys to the play room which houses the Wii... that certainly doesn't hurt). We took her up on her suggestion to create a calendar that outlines who's picking him up, special activities, etc. so that even though our previous routine is out the window, he has some sense of what's going on and what to expect.  We also designated a special task for him so that he feels like he's a part of Jade's recovery -- a co-worker offered a flameless candle, which Little Jay is responsible for "lighting" each night to help make sure the angels know where Jade is and can help heal  her...

Looks like Little Jay is following in the footsteps of his uncles and being an awesome big brother.  We thank God for that!

Day 4, Chemo Round 2 :: Kids Will Be Kids

We tried something a little different this evening at the hospital. Instead of being engrossed with Sesame Street videos, Super Mario Galaxy youtube tutorials, etc. I imposed some silent reading. (It's really been quite difficult for me to say "no" to the kids nowadays.) Diary of a Wimpy Kid 6 and Good Night Moon did the trick... until Jade was finished and wanted Jaytoe's book. The exchange went something like this:

Little Jay: No, Jade. Stop, Jade!
Jade: Moooove!

lol.  We still have to work on that sharing, turn-taking bit.  :)  I love that kids will always be kids.  In spite of everything that's going on, Jade and her brother are still just kids.  I'm happy for that. They're resilient and stronger than I can fully grasp.  That's one of the things that I have to hold on to as we walk through this with Jade.  Seeing her playful, carefree, and self-absorbed like any other toddler is just as comforting for me as a clean bone marrow biopsy (those tests are not 100% accurate anyway, but her smiles, laughs, songs... I can completely trust!)

Jade watches Hello Kitty music videos
 in Japanese on a loaner ipad (thanks,
auntie meeks!) while the light-sensitive
chemo drugs begin their overnight run. 

Treatment wise, today was a good day.  The docs are pleased with Jade's fluid and calorie intake now, so she doesn't need to be on the IV fluids. (This gave her plenty of opportunity to venture off to the playroom with Dad.) No count update; apparently they're only doing the CBCs, complete blood counts, on Mondays and Thursdays.  They ran these labs everyday during Jade's first round and reported on her white blood cells, platelets, hemoglobin, and absolute neutrophil count (ANC), so this strikes me as odd.  The fellow says they have a sense of how quickly her counts will drop from the first round so they don't need to run them daily right now.  So maybe it's good that I don't have the counts to obsess over daily... but I'll follow up with primary doc tomorrow. After all, we have heard more times than we can count that every patient responds uniquely to the treatment... Why not just do the CBC?

Thanks for caring about Jade and our family; we appreciate your prayers and support.