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 28, Chemo Round 1 :: Be The Match

August 2013... Letting their lights shine!

Back in August, before school resumed, before there was a notion of relapse, I had a back-to-school celebration with the kids -- complete with chalkboard placemats, a school-lunch themed dinner,  a fun tablescape, and time to figure out our goals for the year ahead. Jaytoe's included writing in cursive and using the computer more for his schoolwork; Jade's were painting and writing her name.

As we ate our school-lunch themed dinner, we also talked about Matthew 5:16, what it meant for how we treat others, how we carry ourselves. We adopted it as our motto for the year. "Let your light shine before others that they may see your good works and praise your Father in Heaven." Notes in Lil Jay's lunch box were often signed with, "Let your light shine." Or when I greeted him after school, I would ask how brightly did his light shine that day.  Jade got into it too. "I'm shining my light," she would almost sing when passing something to her brother. "Is my light shining, Mommy?" she asked when drawing a picture for Daddy.

Jade's spirit is always shining -- even now -- and is undoubtedly helping her heal and be so playful and strong and brave throughout her treatment... and inspiring us along the way. Well, there is a chance that one of you who is reading the blog, or maybe someone you know, can help Jade's light shine even brighter or save the life of someone else's Jade .

We had the first of what will be several meetings with the bone marrow transplant team today.  We spoke in very general terms about what the rest of this course of treatment will look like. There is a long road ahead of us.  I will post more information about "The Talk" in the days to come, but if you read nothing else, please read this.

Jade's cure is dependent on her receiving a transplant from, in all likelihood, an unrelated, adult bone marrow donor.  Because Jade is so beautifully and uniquely made, there are presently only a few potential donors in the registry who meet preliminary match criteria for Jade; the team is in the process of reaching out to them and calling them in for more detailed testing to determine if they are in fact a good match.  At this point, the doctors are not very optimistic about these potential donors being the match for Jade and are also exploring potential options for a donation of cord blood for the transplant. If you are not registered with Be The Match / National Marrow Donor Program, if you haven't had your cheek swabbed, please visit www.bethematch.org as soon as you can to get registered.

If all goes according to plan -- meaning the chemotherapy is able to rid Jade's bone marrow of the leukemia, Jade doesn't get an infection or experience any of the more serious side effects of the treatment, and a suitable match is identified -- Jade's transplant process could begin as early as June.

Thank you for visiting Be The Match and signing up. Thank you for all of your prayers and your encouragement.

http://www.bethematch.org

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 24, Chemo Round 1 :: Beads of Courage

A feverish Jade sleeps in Olaf's arms
with her newly strung Beads of Courage.

Jade had to take today easy for the most part.  She woke up talking about "circles" in her mouth; I took a peek inside and discovered two mouth sores. It's a fairly common side effect of the chemo -- and one that Jade has experienced before. 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. So a saline rinse and magic mouthwash, a mixture of maalox, benadryl, and lidocaine that is actually called by that name, were ordered to help with the inflammation.

No sooner had the nurse brought in the magic mouthwash and started to demonstrate how to use the dental swabs, I noticed bleeding on Jade's gums.  That prompted an order for a platelet transfusion by the doctors. Her platelet level was at 19, just above the transfusion standard of 10 but still way below the normal range of 150 - 400.  Before the platelets even arrived, Jade spiked a fever. Blood cultures were drawn to help determine if Jade has a bacterial infection, two IV antibiotics -- ceftazidime and vancomycin -- were run to begin treating potential bacterial infections, and Tylenol was administered to bring Jade's temperature down.

The blood cultures will be back in 24 hours; we hope that there is no bacterial infection found. Until then, no walks around the unit or trips to the art room.  The potential for passing something along to one of the other kids on the unit is too great.  So, Jade spent a quiet day in her room -- singing along with none other than Mary Poppins' A Spoonful of Sugar Helps the Medicine Go Down, watching princess movies, reading stories, coloring, sleeping in her Olaf (everyone's favorite snowman) chair. I also thought it would be a good time to string her Beads of Courage, an arts-in-medicine project for children with serious illnesses.

Ms. Elizabeth, one of Jade's favorite art therapists, introduced us to the project and walked us through bead selection a couple of weeks ago: beige for bone marrow aspirates, white for chemotherapy infusions, magenta for ER visits, yellow for overnight stays, red for transfusions, stars for surgeries, aqua for feeding tube placement, face beads for hair loss, and so on. For Jade's 2012 treatment course, we estimated some 300 - 400 beads.  Jade also received a special "Act of Courage" glass bead for her bravery throughout her course of treatment.  Jade was pretty excited about being able to make a "necklace" with her name on it; I thought it was a great, age-appropriate way to help tell Jade's story.  But, I was a pool of tears when Ms. Elizabeth gently explained two of the special milestone beads -- the Purple Heart to symbolize completion of treatment and the Anchor to symbolize relapse and restart of treatment -- and gave me the option to decide whether or not to include them.  I have since pulled it together - as much as I can -- and helped Jade start her Beads of Courage story today, which includes her triumph in 2012 and this test in 2014.  (She was most excited about spelling her name.)

Thanks for checking in on Jade.  Please join us in praying for the fevers to go away and stay away, for Jade to come home for a break soon, and for her complete healing!

Today's Counts:
Hemoglobin: 7.2 (down slightly from yesterday's 7.4)
Platelets: 19 (up slightly from yesterday's 13)
ANC: 0
Monocytes: 2%

Day 23, Chemo Round 1 :: I Don't Have Any Hair!

A combination of balance and floating
helped Jade's new tiara stay in place.

Jade greeted everyone who entered her room today or passed her in the hall with a cheerful, "I don't have any hair!" She was excited to share the news... and to attend the SuperGirl SuperFun Pamper Party that was held on the unit. Perfect timing in my opinion.


Jade has never had her makeup done before (seeing as how her mom only has had her makeup done for prom and weddings... lol). So, it was a special treat to get done up by Sephora makeup artists, get a manicure, drink apple juice from pink champagne flutes, select all kinds of sparkly jewelry to wear -- including stick-on earrings -- and meet Princess Snow White. She loved showing off her sparkly fingernails, eyeshadow, and jewelry.  And when she put on her new tiara, she really believed her transformation was complete... she was a real live princess! I'm not sure if Jade was more enamored with Snow White or the other way around!


So, it was a good day. There is finally some evidence of monocytes in her complete blood count, so hopefully we'll begin to see her neutrophil count begin to rise too. And, just as important, Jade seemed to really be in her element and enjoying herself. The fun only continued after the party was over, with Jade giving makeovers to mom and dad. (Big brother wanted nothing to do with this fun; that didn't stop Jade from asking.)

Jade takes advantage of an exhausted Dad. Yay, lip gloss!	Who is more enamored with whom??	Princess Jade makes sure that the picture with Snow White and Miss D.C. is to her satisfaction.

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

Today's Counts:
Hemoglobin: 7.4
Platelets: 13

ANC: 0
Monocytes: 2% (This is a sign of good things, i.e. neutrophils, to come!) 

Day 22, Chemo Round 1 :: Let It Go!

It is still princess hair... even if not atop her head.

After a couple of weeks of watching Jade's hair grow more brittle and her pillowcases become covered in tiny little hairs, we took the plunge and shaved her head. In true Jade form, she was a trooper about it and her playful spirit shined throughout.

She had already observed that the kids on this floor don't have hair and that hers had begun to fall out when she played in it, when she changed clothes, etc. She asked why her hair was falling out.  Instead of saying that the medicine we are giving you is toxic, I explained that the cells that were making her blood sick were also making her hair fall out.  They just like her so much, they want to be everywhere!  So, in order to help get rid of the bad cells, we would have to let some things go to make room for healthier, stronger hair cells and blood cells to grow back.  (She accepted that pretty well; she would like red, wavy hair to grow back.)
 
Shortly after I sat Jade down in front of me and began to brush her curls out, she took over and pulled the rest out on her own. Then, she gave big brother a lesson in how to sit still when your head is being shaved, saying, "Look, Jaytoe. It doesn't hurt!"

When all was said and done, she played with the masses of her hair that we had collected into a bag -- singing "Let It Go," performing her own rendition of "Single Ladies," and throwing it as us at one point while screaming, "Hair fight!" Tomorrow, we will make a project with some of it per her request.

Thank you for checking in our brave little one and for your continued prayers, encouragement, and support.

Today's Counts:
Hemoglobin: 7.7 (down from yesterday's 8.6)
Platelets: 17 (down from yesterday's 34)
ANC: 0
Monocytes: 0

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 15, Chemo Round 1

Auntie Meeks swooped in to supervise
the sharing-one-minute-squabbling-the-next
siblings while I took a rare mid-day nap.

Jade was right in the middle of a bath when the doctors came around for rounds this morning.  So, instead of participating in the "walking rounds" in the hallway as I usually do, the team came into Jade's room so I could participate from bathside.

Jade was intrigued by the team of six or seven coming into her room. She waved at them enthusiastically with her bubble covered hands and then quietly asked me, "Is this a meeting?"

As it turned out, the review of her counts (which haven't changed much since yesterday), threshold for transfusions, protocol to follow in case of a fever, etc., was not as intriguing as Jade might have anticipated. "This is boring," she whispered to me after a couple of minutes. Jade has been whispering in plain sight a lot lately -- sometimes across rooms even -- and seems to believe that no one hears her but me. It's quite funny.   

There are a couple of changes on the horizon.  Tomorrow, the infusions of GCSF will resume and continue until Jade's ANC is high enough to go home for a break. GCSF is a stimulant that encourages cells in the bone marrow to produce more quickly.  Jade received this a couple of weeks ago while she was getting chemotherapy because it also promotes the growth of leukemic stem cells that may be hiding out in the bone marrow; by making the leukemia "baby" cells show themselves during treatment, the intention is to increase the efficacy of the chemotherapy.  The purpose of her receiving the GCSF now is to help her bone marrow and immune system recover from the more potent chemotherapy agents that she is receiving in this course of treatment.

The other change that will take place tomorrow will be the timing of her appetite stimulant, which has been on an every 12-hours rotation.  Twice a day doesn't seem bad, until you consider her scheduled times for the stimulant, which went from 10am/10pm to 8am/8pm.  This meant that we woke her up (shortly after going to sleep) to take something that would make her hungry before she was ready to get up in the morning, or that we gave her the stimulant and made her hungry right before she went to sleep. Either way didn't make much sense... but would explain Jade's sleepy response of "Yes. Chicken," to the nurse's obligatory can-i-get-you-anything question as she left our room this evening after 9:30. 

Tomorrow the schedule for the appetite stimulant will shift to 8am/4pm.

As always, thank you for continuing to pray for Jade and for this course of treatment to be Jade's cure.


Today's Counts
Hemoglobin: 10.6
Platelets: 51
ANC: 0
Monocytes: 0

Day 14, Chemo Round 1 :: The Waiting Game

Jade concentrating on her
glue project in the art room.

We've only been here for two weeks; it seems like much longer than that.  I ran into another mother in the Ronald McDonald Room who mentioned how anxious her seven-year-old son was getting because they had just entered week seven of his inpatient stay and still have another lengthy bone marrow transplant stay ahead of them. We first met in 2012 when her son was admitted for acute lymphoblastic leukemia while Jade was undergoing treatment. 'Tis a long road ahead...

At this point of Jade's treatment, we are just waiting for her immune system to build itself back up and for her counts to recover so that she'll be able to come home for a visit and not be at serious risk for infection. Jade's chemotherapy infusions ended over a week ago and wreaked havoc on her healthy cells and - prayerfully - the leukemic cells as well.  The doctors are monitoring all kinds of electrolyte levels, but we focus in on her hemoglobin, platelets, monocytes, and ANC.  

Today's Counts Hemoglobin: 10.8 This is up from last week's 7.0 thanks to a blood transfusion... Low hemoglobin levels typically manifest as fatigue, shortness of breath, etc. The typical range is 10 - 14. 

Platelets: 62 This is also up from yesterday's miniscule 5 thanks to a platelet transfusion... low platelet levels are an indicator of a weakened capacity to stop bleeding, internal and otherwise. The normal range is 133 - 333.

ANC: 0 Jade's ANC, absolute neutrophil count, is a measure of her immune system's ability to fight against infections, germs, etc. Neutrophils are the immune system's front-line soldiers and comprise the majority of the white blood cell count. Jade's ANC must reach 250 and stay there for at least two days before there is any speak of discharge papers and going home.

Monocytes: 0
Monocytes make up less than 10 percent of the white blood cell count. They help remove dead or damaged tissue and regulate immunity against foreign substances... among other things. They typically recover faster than neutrophils and are seen as a sign of a rising ANC on the horizon.  

For now, the art room, play room, and wagon rides around the unit are our friends.

Thanks for all of your encouragement and for keeping Jade in your thoughts and prayers.
 

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 12, Chemo Round 1 :: Stronger

Jade's feeling better! She's in much better spirits today, as demonstrated by her party of one whilst being pulled around the Hem/Onc unit in a wagon. She was jamming to all of her favorite Kidz Bop tunes, including Kelly Clarkson's "Stronger," and at one point even had a parade of nurses grooving behind her too.  

You shouldn't have to lift my spirits too, Jade, but you do!  

Thank you for your continued prayers and support. 

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 9, Chemo Round 1 :: Princess For A Day

"Daddy says I'm a Smartie-NoPants,
but I'm a Smartie-Skirt."

Princess Jade decided to grace the Hematology/Oncology Unit with her presence today. After changing the dressing for her central line and taking a bath, she insisted on wearing her Princess Anna dress for the day. She wondered what people would say when they saw a "real live princess."

She sauntered through the halls to the art room, play room, nurses station, and back to the art room -- soaking up the adoration of passersby. And perfected her princess wave. It really is quite majestic.  

It's so encouraging to see her be playful, in good spirits, and making the most of where she is despite what's going on inside of her body right now. I could take a lesson or two from this little one!

Thank you for your continued prayers for Jade's complete healing. 

Day 8, Chemo Round 1 :: Bye Byes

Today was a day of goodbyes.  We said goodbye to Auntie Shameika, the steroid eye drops, allopurinol, round-the-clock IV fluids, and Jade's ANC.

It's true, we will miss Auntie Shameika dearly and can't wait til Sunday when she comes back.  But, we won't miss the steroid eye drops, even though we had a system down this time (instead of her eyes being pried open by a nurse a la 2012, Jade would close her eyes, the drops were squeezed into the corners of her eyes, and then she would reluctantly blink them in). She's been getting the drops every three hours for a week -- including the 11pm, 2am, and 5am hours -- to prevent chemical conjunctivitis, one of the potential side effects of the high-dose chemotherapy.

It was also the last day for the allopurinol, an oral medicine that Jade was taking to help get rid of high levels of uric acid in the blood caused by all the cells that are being broken down by the chemotherapy.  This also happened to be the only oral medicine Jade likes to take. 

We probably should have had some kind of ceremony when Jade was untethered from the IV pole.  Trips to the bathroom, playroom, art room, meal cart just got that much easier.  Not to mention the fact that Jade won't have to put on "yucky baby pampers" at night anymore. It's a big girl, point of pride for her. :)    

Jade's ANC also hit 0 today, as expected.  The ANC, or Absolute Neutrophil Count, is a measure of a specific type of white blood cell that gauges your body's ability to fight against germs and infection. Unfortunately, the chemo that Jade receives does not discriminate; it goes in and attacks the leukemic cells and the good cells... Having an ANC of 0 means her body has very few natural resources to fight off infections of any kind, making her very susceptible to germs that children with normally functioning immune systems could fend off... But, you wouldn't know by looking at her. Here she is, taking RufRuf, for a walk on the unit.

Thank you for your continued prayers for Jade's complete healing. 

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.

Happy Birthday, Jade! Day 6, Chemo Round 1

Jade and big brother enjoying some

post-party Insta-Snow last week.

"Is everyday my birthday?," Jade asked.
"Yes, we celebrate your birth everyday," I replied.

We actually have been celebrating Jade's birthday for over a week now.  We had a small gathering last weekend with family, Disney's Frozen, and InstaSnow so that we could observe her birthday at home -- away from the baggage of the hospital.  Every day since then, however, Jade has gotten something (or gotten away with something) and we've attributed that to her birthday. Yesterday, Jade's actual birthday, was no different.

Jade was in exceptionally high spirits -- maybe because it was her last day of chemo infusions this round or maybe it was the special birthday visits from Auntie Shameika, Grandma, Pastor Greg and Ms. Joann from Grace Lutheran Church, and Monica and Michelle - the "best babysitters ever," as Little Jaytoe calls them. 

She decorated headbands, found glitter glue, served up some imaginary icecream, took RuffRuff, her new doggie balloon, for a walk through the halls, argued with her brother over the Wii, shared a birthday fruit platter with family and friends... and sang "Happy Birthday," of course. 

Happy Birthday, Sweet Jade!

Thank you for all of your birthday wishes for Jade and for keeping her in your thoughts and prayers.

Relapsed... But Fighting

Jade and big brother extraordinaire making
silly faces for Mommy.

I wasn't sure that I'd ever update this blog again. Over the past 18 months, I had toyed with the idea of posting updates on how well Jade was doing, how feisty and charismatic she has grown to be, how beautifully she is made.  I managed only to eke out a few Facebook posts, sharing glimpses of how much we were all enjoying her remission, enjoying each other, enjoying life. 

But we are here.  Again.  With a relapsed leukemia diagnosis.  Day four of chemotherapy, round one. The same stubborn strand of leukemia has resurfaced. After five rounds of chemotherapy and over one year in remission, we are here with 74% blasts in Jade's bone marrow. After five months of my bringing Jade to the oncology clinic, fearing the worst when the unexplained fevers, joint pain, fatigue, and loss of appetite returned monthly for one- to two-week episodes and then disappeared. After five months of "clean" blood tests, being told that this is not what cancer looks like, and skeptically believing that she was just reacting to one of thousands of unidentified viruses. I knew better, but wasn't ready to face the alternative.  Instead, we gathered for the holidays, sang our hearts out, mastered our alphabet and numbers, painted with our fingers, painted with our toes, celebrated birthdays, applied to pre-school, cooked home-made pizza, baked cookies and cupcakes... and I worried.

Despite the familiarity of the sterile halls, the incessant sounds of whirring machines, and friendly faces (both personnel and patients), many things are different this time around. The treatment plan - instead of five rounds of chemo, Jade will have two or three rounds of high-dose chemo followed by a bone marrow transplant.  Jade's hospital stays for each round of chemo will span four to five weeks; the bone marrow transplant stay, some sixty days. (In the doctors' estimation, chemotherapy alone will not cure the leukemia; Jade needs a new immune system.) The medicines - the chemotherapy agents that Jade receives this time are even more potent than those she received in 2012. But Jade is the most different. She is a big girl now, who asks questions, expresses missing home, missing family, not wanting to be here... but, her fighter spirit is still as strong as ever.

After fairly harmless visits to the oncology clinic for follow-ups for the past year, the shock and trauma of a central line placement, lumbar puncture, and bone marrow biopsy just a few days ago are real. I thought we were past that too.  The first few days, she trusted no one; everyone seemed to want to poke, peel, prod, or push something. Very few nurses or doctors were able to evade her side eye. She perfected her "if I don't acknowledge you, you're not here" blank stare when most medical staff enter the room. But, this morning, Jade is playful -- and not just with me.  She was dancing during rounds this morning with the doctors, told them about her new sunglasses, and -- if I'm not mistaken -- flirted with one of the male nurses who walked by. For shame, I know.

With how well Jade did during her first hospitalization, we know that prayer works.  There are many things that we need right now -- healing, strength, sanity, stability, togetherness. But now, perhaps more than ever, we need your prayers and positive thoughts to continue for the chemotherapy to put her leukemia into remission and ultimately for the transplant to be her cure.

Thank you for your prayers and your positive thoughts.