Days 27 & 28, Chemo Round 2 :: Home, Sweet Home

I'll drift off to sleep tonight to the sound of Little Jay snoring and with Jaytoe and Jade at my side.  That's right... Our baby girl is home!  Jade walked right through the front door this afternoon.  Her ANC skyrocketed to 200 on Thursday... and kept moving up on Friday.  While she has a check-up scheduled at the clinic on Tuesday and outpatient procedures (bone marrow biopsy and lumbar puncture, i.e. spinal tap) before Round 3, the plan is for her to be readmitted after her birthday...  So, I'll worry about that next week. For now, I am enjoying these moments... and Jade and Jaytoe are having a blast.  Thank you for all of your powerful thoughts and prayers.

Day 27, Chemo Round 2 :: Sit! Sit! Sit! Sit!

So all we could do was to

Sit!
	Sit!
		Sit!
			Sit!

And we did not like it.
Not one little bit.
-- excerpted from Dr. Seuss' The Cat in the Hat

Little Jay insisted on treating us to a story tonight, and I'm glad that he did.  Dr. Seuss tells the truth!  Yesterday's ANC was 39.  Today, it was at 40 or 36, depending on who you ask.  The numbers are so small that the difference is not significant, or so we've been told... I suppose that's easier for a medical professional to digest than a parent.  Melikes accuracy. But any way you look at it, it's more prayerful waiting.

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 25, Chemo Round 2 :: My Hero

 Aside from the face-to-face time with Spiderman, Batman, and Wonder Woman, today was a quiet day on 4 East. Jade's ANC, absolute neutrophil count, took a slight dip (down to 39 from 44), but that type of fluctuation is not out of the ordinary. During the first round, when her ANC began to recover it was all uphill (at 50 on Sunday, then 80, 120, and 280. Home!) I really hoped for the same trend this go round... but we may be looking at a later discharge day than Wednesday.

While we continued the wait for an ANC of 250, we enjoyed a Superhero Celebration hosted by the Hope for Henry Foundation.  It was really amazing to see Jade and so many of the other caped crusaders, I mean, children (toddlers thru teens) on the floor in their masked or painted faces just having a great time. All of these kids are so brave... and so much stronger than I've ever had to be.  So, it was appropriate for me to finally see Jade outfitted today as I've imaged her for the last three months -- as my hero. I am so thankful for organizations like Hope for Henry whose work is to make sure that kids with cancer and other serious illnesses don't miss out on some of the best things about being a kid (their words). A few months ago, I didn't really appreciate just how important laughter, surprise, and whimsy are to the recovery process, but I know it well now!  The Child Life Specialists, Art Therapists, Music Therapists, and volunteers here are great, but the reality is that sometimes it takes a knock-your-socks-off experience for these kids (and their families) to put aside the worry and just be a kid.

Super Jade enjoyed herself -- running from one place to another, following Spiderman, grabbing the artists' markers and pencils, knocking over the toy display.  Jade seemed to be really taken with Spiderman; she gave him about 20 high-fives over the course of an hour.  She slightly approved of Batman (Spidey had to let him know that the high-five was the way to her heart).  She didn't quite know what to make of Wonder Woman; she actually "asked" her to not be in the picture... It sounded something like this: Noooo!

What really amazed her was the caricature drawing. Though a little restless during the sketch, afterwards she just kept pointing to the picture that Mr. Peter created while saying, "Jade. Jade." Super Jade flew back to her hospital room with a portrait, snapshots, comic book, t-shirt, and superhero toys in tow.  Sleep quickly followed... and now, beckons me.

www.hopeforhenry.org

Days 23 & 24, Chemo Round 2 :: Progress

It seems as if sunshine and a visit from "Amma," Jade's name for Grandma, were all we needed for ... movement on the ANC!  Saturday's count was 16; today's was 44! If we keep moving at this rate, Jade's ANC could reach 250 and she could be heading home on Wednesday.  In addition to a rising ANC, Jade is making her own platelets (no more platelet transfusions this round!).  We saw a drop in the hemoglobin today to 7.1, which was surprising given all of the other counts trending upwards. Hemoglobin levels less than 7 trigger a blood transfusion. So, we're praying that her hemoglobin rises with her next 4am lab work to put off any more blood transfusions this round.  There haven't been any more appearances from last week's menacing fever... And Jade just checked (see video below)... her blood pressure is fine.  We're ret ta go... ahem, I mean, ready to go! Your prayers and positive energy are powerful... thanks for keeping Jade in your thoughts.

Days 21 & 22; Chemo Round 2 :: A Breath of Fresh Air

We were so excited about
our "outing" that we forgot
to grab a camera... You'll have
to take our word for it!

Yesterday's lab work came back: the blood cultures are negative (!!). So, while we're still not sure what caused the fevers, we know it's nothing bacterial or fungal.  I count myself among the world's best worriers in the world -- I do have a knack for visioning bad, worse, worst -- so the lab results were able to settle an otherwise restless 48 hours for me.

We did a victory lap around our room, then the unit. But for some reason, our home away from home for 72 days and nights so far this year seemed smaller than usual. I want Jade to actively remember and know that the world is bigger than 4 East.  Like most children, Jade continues to grow "curiouser and curiouser."  She barges into unlocked offices on the unit; waltzes into other patient rooms. Despite my better judgement, I asked a nurse if I could take Jade to the cafeteria on the second floor.  After a few calls, that proposal was shot down.  There are a billion people from all over in the cafeteria and with an ANC of zero, it was too risky.

A pic of the hot air balloons from the
hospital website... I forgot my camera,
remember?

There was a silver lining though.  I could take her to the Atrium to see the hot air balloons if she wore her mask and I exercised prudent judgement. So, armed with a mask and hand sanitizer to-go, we made our way to the elevator bank and down to the first floor toward the Atrium.  I won't get into all the details of this trip, because I'm so anxious to get to the really good part.  We arrived in the Atrium only to find some type of special marketplace/vendor fair going on. Too many people.  I pointed at the hot air balloons (a really cool indoor feature), and turned around to go back upstairs. Much shorter trip than I expected but Jade seemed to enjoy just walking another hall ... and riding the elevator.

A nurse checked in on us later to find out how the "outing" went.  I was grateful for getting off of the floor, but slightly disappointed by the brevity of the trip.  "How'd you like to go outside for five minutes?"  Wait, what?!? We can go outside. No, normally you can't. But because you'll be with me, it'll be okay.  There were a million questions I should've asked before grabbing her mask and blurting out, "Grab your shoes, Jade!" But, those questions went unasked.  The nurse lead us on what was probably a five minute walk to the other side of the hospital (literally) that houses a key card access only garden/outdoor space in the administrative wing.  We had the space all to ourselves.  Serene. Intimate. Beautiful. Green. Jade just stood there -- I think in shock.  She rubbed her eyes a bit as she adjusted to the natural light and stood there quietly, soaking up the sun and with a light wind on her head.  (Remember, I'm a big worrier and even bigger softie, so I shed a couple of tears as I reflected on the fact that  this little girl has not been outside to enjoy the sunlight, the fresh air since, since... ) We walked around for a bit, with me eagerly pointing out everything to Jade -- the amazing view of the reservoir, the trees, the warm sunlight, the Mickey Mouse statue.  Mickey prompted her to break her silence. "Mitty!," she almost whispered. He was probably much bigger than she had imagined. :) Alas, it was time to return to our room.  As soon as we left the garden and crossed the threshold, Jade turned around to point and half stated/half pleaded, "Outside.(?)"

I am so grateful to the nurse for thinking outside of the box and helping Jade leave behind the fluorescent lights and central air for a moment, and enjoy what I will remember as one of the most beautiful spring days. (Jaytoe and I agree, the only thing more natural than the outdoors is children being and playing outdoors. One day soon, when we are not effectively living at the hospital anymore, we will be throwing our energy behind support for a healing garden at Children's National Medical Center... children who are hospitalized for long stays need to be able to get a breath of fresh air. Or, as that awesome nurse put it, "Flowers need their sunshine.")

Thanks for checking in on Jade and keeping her in your thoughts and prayers.  We're still waiting on some movement from Jade's stubborn ANC (15 days after an 8-day round of chemo, it's still at 0 and must rise above 250 for us to go home for a break before the next round... yes, there are a few math problems in there for Little Jay, who will thank me later... much later.)

Day 20, Chemo Round 2 :: Fever, Fever, Go Away!

Just took it easy today... waiting for counts to recover and fever to pass. 

Days 19 & 20, Chemo Round 2 :: Fever

Jade spiked a fever at about 3:40am.  I knew she felt warm when Little Jay and I came in last night, but the temperatures taken at 8 and at midnight were normal. Jade knew something was going on in her little body though; she dragged the IV pole, which we haven't been hooked up to for more than a week, over to her sleeping area before we settled in for the night.

The docs have stopped the antibiotic she was already on (levoflaxin) and started her on another course of two other IV antibiotics (ceftazidime and vancomycin) and Tylenol.  The ceftaz ran for about 15 minutes; the vancomycin typically runs over an hour. Because of Jade's bad reaction to faster drips in the first round of chemo, they've slowed the infusion to two hours. This vancomycin can cause some pretty uncomfortable side effects, so we're watching out for those.  She'll be on these antibiotics for at least 48 hours.

The nurse has been in our room for most of the last hour and half (it's 5:30am right now). Fevers can be especially scary because they are a sign of infection. And infection right now, while her immune system is so comprised, would not be good. They're running cultures on Jade's blood to see if there is anything bacterial, etc. going on.  Our prayer is that there is not.  Thanks for keeping Jade in your prayers.

Days 17 & 18, Chemo Round 2 ::

Getting ready to go... 

I spent this evening in Room 406; Little Jay, Jade, and I had an impromptu play date with 6-year-old Hafiz, another brave young soul on 4 East.  I'd met his mother a couple of weeks ago and shared an elevator with her this evening on my way to the unit after picking Little Jay up from afterschool.  Little Jay spied the new Power Ranger toys she had in hand for Hafiz, so his curious/eager/greedy eyes had already answered "yes" when she asked if he would like to come play with her son.

I'm glad we took the stroll down the hall.  Hafiz is strong. Zahar, his mother, is strong.  Hafiz was diagnosed a little over three years ago with neuroblastoma at the age of three, just a couple of months after his father died unexpectedly.  With a little over a year of treatment, which included chemo, radiation, and a stem cell transplant, Hafiz achieved a remission.  He was in remission for two years -- two years that he got to be a typical four or five year old, playing with his older brother, going to kindergarten.  But then Zahar noticed unusual bruising on him. He was tired when he came home from school. And then his nose started to bleed.  While the doctors at first chalked the bruising up to schoolyard antics, Zahar insisted that her suspicions about a secondary leukemia be disproved... or confirmed.  After enjoying two years of remission, Hafiz was diagnosed with acute myeloid leukemia. He is now recovering from his first round of chemotherapy to treat his AML, and like Jade is waiting for his ANC to rise from 0... I can't even imagine.  

Jade looks so happy now, so healthy. I cherish every moment we have together. And yet, rest does not come easily.  I continue to spend a lot of time reading about Jade's leukemia -- I want to be informed so that we can be actively involved in her treat, know what questions to ask.  But, I also don't want to scare myself anymore than I already am... there are some discouraging statistics out there.  Early on, one doctor told us why he doesn't place much emphasis on statistics when speaking with families: "If Jade's leukemia had a 90% cure rate, but she ended up in the 10% that doesn't get cured, what difference does the other 90% make to you? Our goal is for every child to be cured, so we look at and treat each child's case of leukemia individually. Those numbers don't dictate how we treat our patients; we don't take anyone for granted or write anyone off." 

There was immediate comfort in hearing that... even though the stats still dance around in my head (AML has a 50-60% cure rate in children).  I've found even more comfort and strength after sitting with Hafiz and speaking with his mom; after finding "Little Air Bear," an awesome little girl who was diagnosed with AML-M7 and spent 146 days in the hospital and has been at home -- cancer free for over a year; after finding Charlotte online, another amazing little girl who was diagnosed with AML-M7 at two-years-old and has been cancer free now for a year after a bone marrow transplant; and after stumbling across Starla, an amazing three-year-old who just headed home after experiencing heart complications from the chemotherapy that rid her blood and marrow of the AML-M7, on Youtube and then speaking with her mother on the phone.   I thank God for giving me the courage to overcome my fear of reaching out to other families; there is an unbelievable amount of inspiration and strength that I've found in them and their journeys. Thank you for keeping our family in your prayers and thoughts... please send a prayer up for all of these brave, young cancer warriors. 

~ Taneika

Days 15 & 16, Chemo Round 2 :: A Full Weekend

Platelet transfusion. Conjuctivitis. Capillary hemorrhaging. Culture Kingdom Kids... and the weekend is not even over yet!

Just before a shift change earlier this week, I said to our nurse, "This may sound odd, but Jade's eyes are not as bright as they normally are." No secretions. No itchiness. Just not my bright-eyed girl. The following morning, some pinkness was detected so out came the dexamethasone eye drops, which are usually given to leukemia patients to prevent conjuctivitis, or pink eye.  Needless to say, Jade was not too happy about any of this; the drops can cause a burning sensation in the eyes and are administered every six hours, which inevitably meant having to wake her at 2am or 4am for a dose...  Well on further examination, it turns out that it wasn't pink eye at all.  Yay!  Just a little capillary hemorrhaging.  (Ummm... I think I'd rather the pink eye.)  It actually sounds much worse than it really is.  Essentially, tiny blood vessels in Jade's eyes burst (which apparently happens even in healthy people if one sneezes, coughs, etc. too hard.)  Her low platelet count, which had dropped to 7 and prompted a platelet transfusion Friday morning at 7:30, likely contributed to this bleeding. There is, apparently, no danger to her vision or the eye, and no course of action to be taken: just wait a couple of weeks for the eyes to absorb the blood naturally. So, we'll just wait on that while we wait for her ANC to rise too; it was still at zero today.

Our regal kids with Ms. Jessica at the
end of a Culture Kingdom Kids day. 

Waiting is, afterall, what we do now...

For lab results, 

blood counts to recover, 

the dinner cart, 

a miracle.  

It's easier to pull off during the week with the distraction of the play room and art room on the unit, the full staff (social workers, music therapist, child life specialist, etc.) in the building, the hub-bub of a hospital during peak operational hours. But the weekends can be brutal.  The play room and art room are closed. Staffing is adequate, but skeletal. Quiet is the norm.  And families like ours are walking countless loops around the unit (it's 18 paces for each side) or entertaining themselves in their rooms to pass the time. So, imagine how thrilled we were for today's visit from Jessica Smith of Culture Kingdom Kids, which produces children's workshops, parties, and play dates to teach cultural heritage through the arts. 

I only met Jessica once before and very briefly at a December reception and photo shoot for Prince George's Forty Under 40 awardees.  But when she learned that Jade was sick, she didn't hesitate to reach out and offer the kids a change of pace from a typical day at the hospital, which meant so much with my concern/guilt about the amount of time Lil Jay spends in the hospital and Jade not being exposed to enough stimulating material and activities during these month-long hospital stays. Jessica took a couple of hours out of her Saturday and arrived with freshly sanitized instruments and toys :), Culture Kingdom Kids t-shirts, books, crowns, and music in tow. With a story time that got Lil Jay talking about what he likes about himself, a rowdy instrument and dance time that took us from a Ghanian schoolyard to Disney's Choo Choo Soul, and cool-down time with an African-American history/coloring book, we had a certified party in Room 415! At one point there were two or three nurses outside the door jamming along with us. We all really had a great time, but seeing Jade parade around the unit in her crown so proudly, Lil Jay make up his own dances, and my husband relive his marching band days -- albeit with a pint-size drum -- was the most special part for me.  We haven't had many moments like this in 2012... Thank you for this moment, Jessica, and for welcoming us into the kingdom! We thank God every day for such supportive friends and family.

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 13, Chemo Round 2

Apparently constipation can be one of the side effects of chemo or the other related medicines Jade is taking.  So today turned out to be an eventful day, and by eventful I mean poop-ful.  That's right. The Miralax concoction Jade has taken over the past couple of days finally matured from stinky gas to full-on poop.  Dad counted at least 5 poopy diapers and one wardrobe change... thankfully, he was on duty today ;)  (Don't think I'll go into the process of saving soiled diapers, but not wipes, for the staff to measure how much she's putting out.)       

When Lil Jay and I arrived, it was after 7.  All of Jade's numbers had come in much earlier in the day:

Weight: 12.3kg
White Blood Cells: 1.88
Hemoglobin: 8.6
Platelets: 29
ANC: 0

All of these, with the exception of her ANC - which has already hit rock bottom - and hopefully her weight, are expected to decline while the chemo wreaks its havoc. Jade's ANC must be at 250 and climbing before the discharge papers come out. 250 is a great sign of the body's ability to produce white blood cells and begin fighting against infection and all the germs inside and outside of the hospital building.

The normal range for hemoglobin levels for kids is from about 10.5 to 14. Hemoglobin is a measure of how well red blood cells are carrying oxygen through  the body, so low hemoglobin levels translate to shortness of breath, fatigue, etc. When Jade's hemoglobin levels drop below 7, she'll be up for another transfusion (about a 4 hour process). 

Platelets help your blood to clot (I'm sure there is a bad West Indian joke in there somewhere, but it's a little late). Low platelet levels are a concern because it minimizes the body's ability to stop bleeding; the biggest concern for Jade would be internal bleeding that her body wouldn't be able to stop.  So, naturally, I'm freaking out about her falling or hitting anything. When her platelets drop below 10, she'll be up for a platelet transfusion (about a 15 minute process). 

We said goodnight at about 9:30, made our way to the car (but not before Lil Jay accidentally slid through someone else's vomit in the lobby... I know, a hazard of being in the hospital, but really it needs to be cleaned up. Just glad I have Lysol and paper towels in the car), and got home at about 10:15.  

Grandma and Dave, thanks for stopping by to keep Jade and Jaytoe company today! (And yes, that is Lil Jay's favorite new pose -- palming Jade's head.)

Nite-nite.

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.

Day 11, Chemo Round 2

If this is your idea of morning fun, then I now understand just how angry those birds are.  We started this morning like any other day, with Jade's oral meds (five is the most she takes at one time during the week; six on the weekends).  It's not nearly as bad as it was when we first started along this road, when refusal followed by gagging were the norm... But now she's an old pro, so she even helps by pushing the plunger on some of them. What's on deck?

1. Polyvisol: a multi-vitamin taken once daily 
2. Zofran: anti-nausea taken 3-4 times daily
3. Cypraheptadine: appetite stimulant taken three times daily
4. Levoflaxin: antibiotic taken twice daily
5. Flucanozole: antifungal taken once daily.
6. Bactrim: antibiotic taken twice daily on Saturdays and Sundays.

One happy baby! Jade after
this evening's bathtime.

Each of these meds is critical to Jade's tolerance of the chemotherapy and recovery.  Chemo does so many things to the body.  In addition to killing cancerous cells and other rapidly dividing cells (like hair, the cells lining the digestive tract, etc.), it completely destroys the immune system and can also cause bleeding, nausea, loss of appetite, mouth sores, diarrhea or constipation, dizziness, exhaustion/fatigue, heart disease, and the list goes on.  We thank God that Jade has not experienced most of these side effects.

The antibiotics and antifungals are especially important because her immune system is so weak, as expected, from the chemotherapy treatments.  Just four days ago, her ANC (absolute neutrophil count, a measure of a specific type of white blood cell that gauges your body's ability to fight against germs and infection) was at 1,500.  A normal ANC range is 1,000 and up (depending on the treatment center.)  Today, Jade's ANC is at 18, which means her body has very few natural resources to fight off infections of any kind. But, you wouldn't know by looking at her.  Her energy is high, and aside from what I believe to be a mild case of constipation (I'm a mom, so you had to know it wouldn't be too long before I devolved to poop talk), all is well.  Finally got her to drink the Miralax concoction the nurses gave us about an hour before she went to sleep... This should make for an interesting night to say the least.   

Thanks for checking in on Jade and continuing to keep her in your prayers.

Day 10, Chemo Round 2 :: Jamming with Jade

A LOT of dancing goes on in Room 415!  Please enjoy this clip of Jade jamming to Choo-Choo Soul.

Even though the music is loud (Jade insists on everything being turned all the way up), today proved to be a rather quiet day for Jade. One episode of vomiting, but otherwise okay.  We (including the docs and nurses) are definitely keeping an eye on her eating and drinking.  She's maintaining her weight thus far and has not had to be on IV fluids or nutritional supplements, but she just seems to be losing her appetite and desire to drink.  It's safe to say that she played with her dinner for a good hour before I whisked her away into the bathtub. We just eked out 28 oz for her daily fluid intake (goal is 36 oz) before she passed out for the night. Momma is going to follow suit... I am beat!

Labs will be drawn in the morning around 4am, so I'll update everyone with her counts then.  We're hoping the counts will also give us a sense (based on her response to Chemo Round 1) of when she ** might ** be recovered enough to go home.

Much love,

Taneika

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 8, Chemo Round 2

So, I must confess. I was dozing off as I typed last night's entry... I'm not hoping for a repeat tonight.

It was another quiet day on 4 East,  with the exception of the nurse misreading the administration guidelines of Jade's antibiotic. (Should be one hour before the chemo, not...) This is why we're so tired... can't sleep, even when all appears calm!

Jade clearly excited by the balloon delivery!

Jade's high spirits continue to prevail.  Our nurse-practitioner told us today that she loves that we get Jade dressed every day; that it helps everyone, including staff, feel better.  I just couldn't imagine her being in pjs or a gown every day. That would be depressing for us.

We took a walk, visited the play room, teen room, and art room all before noon.  Jade's physical therapy visits resumed today.  Joint pain was one of her presenting symptoms, add to that the fact that joint pain is a possible side effect of the antibiotic she's on, and you get physical therapy 3 times a week.  Jade enjoys it though; the physical therapist she had today was great. We also had a surprise delivery of balloons (I tried to capture Jade's "ut, ut, and away" on video, but was too slow) and a visit from Ms. Jill from my office.  Jade was so sweet, she threw her little arms wide open to give her a hug when she came in. And Ms. Jill was such a sport, getting adorned with stickers, having her pockets searched, and translating Spanish videos Jade found on Youtube.  

Papa Frankie is back in town and spent the day with us as well, so Jade had plenty of opportunities to disturb his slumber. We ended the day with a little vomit; not sure if it was the medicine, the food, or her feeding herself.  I got her bathed (no small feat with her central line, which we avoid getting wet to minimize the number of dressing changes and the opportunities to expose the site to germs)... and then she was back to her old tricks. :)  

Less than 12 hours from now, Jade will be finished receiving the chemotherapy drugs for this round.  The watchful wait then begins as we monitor her counts falling all the way to zero, pray and guard against any infection or illness, and then recovery. We anticipate at least another 20 days in the hospital before Jade can have a break to go home for a few days.  Please keep the prayers and positive energy coming!

  

Day 7, Chemo Round 2

Today was a quiet day.  I think the chemo may finally be getting to Jade; after "sleeping in" til 9am, she slept for four hours in the middle of the day.  No fever or other symptoms, so the docs aren't worried about it.

Jade's treatment plan is pretty "mild" compared to the first few days of the cycle.  She only has fifteen minute infusions of the chemo (cytarabine) every twelve hours.  They also switched her from IV antibiotics to oral, which means she'll be completely untethered when her chemo isn't running.  (Jade is participating in a clinical trial for levofloxacin, an antibiotic that has been shown to reduce risk of bacterial infection in adult cancer patients.  This trial aims to determine if there is a similar positive effect on children with acute leukemias.  I -- selfishly -- figured if we could prevent her from developing an infection or fever while undergoing chemo AND contribute toward research to improve treatment plans and outcomes for other children with cancer then sign us up!)

But, baby girl is strong. Her counts are rising - six days into this round.  The docs are attributing the rise to Monday's blood transfusion and her body still recovering from the first round.  Her counts are still expected to drop to zero, but it will likely take longer this round.  As explained by the docs, her bone marrow is now full of good, healthy white blood cells as opposed to being full with leukemic cells when she was admitted in January.  These cells fighter harder and are more difficult for the chemo to destroy...

More bad news for our new neighbors. When we come back for rounds 3,4, and 5, I'm hoping that we are not placed in Room 414.. Please continue to pray for all the little ones bravely fighting cancer.  Thank you for your love and support.

Days 5 & 6, Chemo Round 2

I've not interacted with very many families on the unit... partly because of my quiet personality, but mostly because I'm not ready. Even through the cordial smiles and "good mornings," there is an underlying fragility that has its way of surfacing in parents of a child with cancer or blood disorder -- in the eyes, voices, mannerisms. I was a "big softie" before, as Jaytoe would say, and now... well, depending on the day my emotions could be described anywhere on the range from fragile to wreck.

While I've been at the hospital, there have been two code blues on the unit.  First you hear the announcement over the intercom. Then you hear the sounds of sneakers, crocs, and heels as nurses and doctors run to the patient's room.  There wasn't a code blue last night, but when I returned to the hospital from a brief meeting there were between 25 and 35 family members and friends spilling out of the room next door, the room we had occupied during Jade's first admission. There wasn't good news for the brave soul next door.  I said a prayer for the family and held Jade as close and as long as I could last night. This round of chemo has thankfully been uneventful.  No fevers, no vomiting or diarrhea, no allergic reactions -- and she's completing day 6 as I type this post! Her spirits are remarkably high right now; she is such a joy to be with.  I cherish each of the moments we have with her, Little Jay... I hate that this cancer can be so unpredictable, that life can be so tenuous.

This morning, the room next door is empty and being readied for the next patient...  Please continue to pray for Jade and all the little people who are courageously fighting caner. Thanks for your love and support.

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.

Day Three, Chemo Round 2

Got home and settled in about an hour ago.  It's hard to leave Jade at the end of the night. I don't want to go; Little Jay doesn't want to go.  To stretch our time a little further, we always have Little Jay take his shower and get ready for bed in Jade's hospital room.  But at some point, the water is turned off, his legs, feet, arms, and hopefully elbows are lotioned, and one of the parent has to leave.  Tonight it was me. Work and school beckon.  

Day three of chemo was so-so for Jade. Dad reports that her hemoglobin levels dropped below the minimum threshold so she had to get a blood transfusion, which meant she was hooked up to the IV pole for four hours plus an additional hour for the antibiotic. It was an uneventful transfusion (yay!) -- no reaction to the blood. So, most of the day was spent napping and tethered. Once she had her freedom back, she roamed the hallways with Dad a bit, and added some stickers to her Color Wonder masterpiece. 

We are back on a fluid/calorie intake watch to make sure Jade is taking in enough fluids (36 oz) to flush the chemo out of her system and enough nutrients and calories (1,400) to at least maintain her weight and fight this thing. Her fluid intake has been between half and two-thirds of where it needs to be, so she is on "maintenance IV fluids" during the night.  She weighed in at a whopping 11.9k (or 26.2 pounds) this morning, so I don't think we'll be having any conversations about feeding tubes over the next few days!   

All of her other counts are dropping as expected. White blood cells are at 2.39; platelets at 308, and ANC at 890 (we expect to see this go all the way to zero before she can begin to recover). All of which means we're on infection watch from now on, paying careful attention to handwashing, cough/sneeze covering, general health of visitors, etc. 

Jade's currently halfway through her etoposide infusion for day four of chemo, which technically started at 9pm.  Please... keep her in your prayers.

Til later...

The Treatment Plan

Our caged bird... Had to put Jade in her
crib to play while tethered to the IV.

So, Jade completed day two of round two's chemo like a champ at about 9:30 this morning. Overnight, we had some issues with low blood pressure, which is a side effect of one the chemo drugs - etoposide. This happened at the beginning of the first round, when they slowed the infusion rate from one hour to four. They stopped the infusion, gave her some IV fluids over an hour and that seemed to do the trick.

Overall, this round of chemo will be almost identical to round one, except it will only run 8 days (two days less than round one.)  We're hopeful that Jade will weather this one as well as the first, but keep her appetite up to minimize how much time she spends hooked up to IV fluids and to avoid the feeding tube altogether.

We were psyched to hear a "bit of good news" from one of the team doctors the night before Jade was readmitted. The results of her bone marrow biopsy last Tuesday, February 28th were clean!  When Jade's ANC recovers after each round of chemotherapy a bone marrow biopsy will be performed to see how effective the chemo was on eliminating the leukemic cells. And the results revealed less than 1% leukemic cells (they can't say there are none because of limitations of the science, i.e. the instruments they use detect to .01, so there's a possibility that there is .001 leukemic cells and that's why we have four more rounds of chemo... to find and destroy any isolated remaining cells and prevent a future relapse.) Pretty awesome news, wethinks! According to www.cancer.gov, early response to therapy is predictive of outcome.  So, this is what we were all praying for.  We know Jade still has a long road ahead of her, but we'll take any bit of solid good news.  There are a few follow-up questions we'll have for her primary physicians here (what specific tests were used, etc.), but we're optimistic right now and very happy that they did not need to intensify her chemotherapy treatment... yet.

Right now, Jade's treatment road map calls for five rounds of chemotherapy.  The first two rounds are what they call "induction," and whose purpose is to bring blood counts back to normal and no detectable trace of the leukemia in the bone marrow.  The last three rounds are called "consolidation;" the purpose of these three rounds is to destroy any remaining, isolated leukemic cells. These rounds will be more intense in terms of the dosage of drugs Jade receives.


Here's what Round One and Round Two look like in terms of chemotherapy that Jade receives. 

Day 1: Cytarabine (15 minute infusions every twelve hours); Daunorubicin (one 6-hour infusion); Etoposide (one 4-hour infusion)
Day 2: Cytarabine (15 minute infusions every twelve hours); Etoposide (one 4-hour infusion)
Day 3: Cytarabine (15 minute infusions every twelve hours); Daunorubicin (one 6-hour infusion); Etoposide (one 4-hour infusion)
Day 4: Cytarabine (15 minute infusions every twelve hours); Etoposide (one 4-hour infusion)
Day 5: Cytarabine (15 minute infusions every twelve hours); Daunorubicin (one 6-hour infusion); Etoposide (one 4-hour infusion)
Day 6: Cytarabine (15 minute infusions every twelve hours);
Day 7: Cytarabine (15 minute infusions every twelve hours);
Day 8: Cytarabine (15 minute infusions every twelve hours);
Day 9: Cytarabine (15 minute infusions every twelve hours);
Day 10: Cytarabine (15 minute infusions every twelve hours).

Thanks for your continued prayers... 'til tomorrow.

Round Two

What an eventful two weeks we've had.  Just two weeks ago, Jade was still in recovery from her first round of chemotherapy.  Her ANC was at 0 and had been there for 14 long days; she was using an NG feeding tube to receive nutritional supplements overnight (the combination of chemo and hospital food did not make for great calorie intake); and had developed a nasty cough. The next morning I woke up to learn that her counts were finally rising. They were at 50 (and the docs need to see her ANC at a steady and rising 200 before discharge is considered). 

The next few days were a flurry of activity.  The bone marrow biopsy that was scheduled on Monday to determine if there was something delaying her count recovery was postponed. With her counts rising, the team decided to wait until her counts had recovered even more so they could obtain a better sample to determine how effective the chemotherapy had been in eliminating the leukemic cells. On Tuesday, the NG feeding tube was removed (based on good calorie intake and weight gain) and the staff told us we would be discharged the next day if her ANC continued to rise at the rate they were going up.   Tuesday is also when I started feeling a cold coming on, which I can only attribute to Jade's coughing and sneezing in my face for the previous two weeks. 

In any case, I work with some terrific ladies who helped nurse me back to health with spicy Liberian collard greens, organic tea, and ** Lemon Ginger Echinacea ** so that I could actually be present for Jade's homecoming. While getting myself healthy, I had less than twenty-four hours to whip my house into proper condition. The house, including air vents, was scoured to prepare for Jade's return -- thanks in part to the generosity of Auntie Shameika and the professionals at Sears and Maid Brigade. 

With the exception of one hiccough (the home visit nurse said Jade's lungs sounded course and she was concerned about her breathing) that had me frantically taking Jade back to the hospital the day after she was discharged, Jade's 9-day home visit was a blessing and family-filled.  Auntie Shameika, Grandmas, Auntie Judy, Uncle Rashid, cousins Dionte, Jazmyne, Brooke, and the Carters all made appearances. (The unplanned clinic visit was uneventful. The docs didn't hear anything of concern in her lungs; and three short hours later we were heading back home.) But just seeing and having her at home, sleeping in our bed, running through our halls, playing with her brother and cousins... that's how it should be. 

Doing regular family things together was how we decided to spend this home visit. (Her ANC was still relatively low to consider a public outing... and why chance it?) There was baking, watching the dunk contest, music-making, sleeping late, family-style breakfasts and dinners... in other words, delight. I felt myself able to breathe and almost relax for a moment (well... as much as a mom can relax when tracking medications and obsessing - perhaps - over the cleanliness and safety of Jade's central line and lumens, a.k.a. tubies.)  

We had a pseudo-sleep over on her last night at home; we stayed up late, ate Oreos, blew up the air mattress and all four of us slept in our bedroom that night.  We excused Jaytoe from school to chaperone his sister back to the hospital.  Jade was readmitted on Friday, March 2nd to begin the second round of chemotherapy to treat her AML.