Day +38, BMT :: Adenovirus, GVHD Stage 3, and ECP... Oh My

Jade has been sleeping a lot.  Since the transplant.  Since the procedures on Friday.  Nobody questions it; her body has been through a lot and needs to recuperate.  For the third time in my life, I've been advised to "sleep when the baby is sleeping." I don't usually. I can't. Partly because of the revolving door of staff who are in and out of the room, but also partly because I don't want to miss those moments when a smile begins to form on her face and then a laugh... yes, she laughs in her sleep. But she is awake now... and just sang her way through the dressing change for the hemodialysis catheter that was surgically placed in her chest on Friday.  You're gonna hear me roooooaaarrr!  In spite of everything that she has gone through and has yet to go through, Jade has held onto her happiness.

Jade had been scheduled for upper and lower endoscopies to check for graft versus host disease in her gut, but a positive test for the adenovirus on Thursday threw the team into a completely different gear. THIS is the virus we worry about, the attending told us.  Steroids for treatment of Jade's confirmed skin GVHD and suspected gut GVHD were now off of the table. She will instead have weekly infusions of an anti-viral to help curb the adenovirus in her system. The risk of the steroids strengthening the virus and having it spread from her gut into her blood or lungs was too great.

So not only did they perform the upper and lower endoscopies on Friday, which confirmed graft versus host disease in her gut and advanced her from Stage 1 mild GVHD to Stage 3 severe GVHD, they also placed another catheter in Jade's chest so that she can begin extracorporeal photopheresis (ECP) to treat her GVHD instead of steroids.  (ECP is a type of long-term therapy that will withdraw some of her blood, separate the white blood cells out, expose the overzealous T cells in Jade's donor blood to ultraviolet light to calm them down and thereby lessen the attacks to her skin and gut.)

The team feels good about their being able to get this under control. For now, Jade is back on round the clock IV nutrition and a very restricted diet (started with water and ice chips for 48 hours and advanced to include sodium free chicken broth and G2 Gatorade this afternoon). She had a tough time with the water and ice chips diet.  In fact, it is one of five things that have made her cry at the hospital (along with needle sticks, dressing changes that tear skin, feeding tube placement, and saying goodbye to family and friends.) What a difference 30cc (that's essentially the size of a medicine cup) of chicken broth makes.  A smile has replaced those tears.

Thank you for keeping Jade covered in prayer as she went into the operating room last week and for continuing to keep her in your prayers throughout this journey toward complete healing.

Ups and Downs :: First Week Post-Transplant

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

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

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

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

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

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

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

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

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

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

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

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

Day +7. Tea anyone?

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

www.facebook.com/superfriendsforjade

Day -1, BMT:: Day of Rest

Knock-knock.  Who's there?

Today was Jade's official day of rest. No chemo. No IV fluids. Just a "down" day (with more than a dozen infusions of immunosuppressant, anti-fungal, antiviral, and anti-nausea medications) before one of the most important days of her life. 

I don't know how Jade will fair in the aftermath of the transplant.  We expect the actual transplant itself to be fairly uneventful. She will be monitored very closely during the infusion of the stem cells, but it is the ensuing days and weeks to be fraught with uncertainty. 

We have been forewarned that most patients feel pretty crummy while their bodies recover from the shock of the transplant. That they develop fevers pretty quickly. That they stop eating on their own and often require a feeding tube or IV nutrition. That they make at least one trip to the intensive care unit. 

Jade with Olympic medal swimmers
Kate Ziegler and Kaitlin Sandeno

 I don't know what Jade's recovery road will look like, but I am faithful that she will recover and be as strong as I saw her this afternoon after a morning bout of nausea and benadryl-induced slumber -- charming Olympians, going in on the Cha-Cha slide, belting out "Let It Go," chasing her big brother in circles, perfecting her comedic delivery with knock knock jokes and hospital humor, and snuggling with Mommy.  

The transplant is scheduled for 2pm EST.  Please say a prayer for our baby girl. A prayer that these new cells are Jade's definitive cure. #bravestrongready

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 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. 

Through Day 23, Chemo Round 3

I know, I know, I know. It's been a full 16 days since the last blog post.  But don't be misled by that inactivity; Jade has been anything but.  It is her mom that needed a break (I knew I wasn't in a good place when I started crying in Little Jay's IEP meeting... I always have my game face on during those.) I guess it all - family, lack of sleep, work, flat tires, dying motors - just caught up with me.

The past 16 days have been filled with the ups and downs that have come with each round: dysfunctional central line, blood and platelet transfusions, weight loss of 2.2. pounds, unwanted discussions about feeding tubes, constipation, new meds, beneprotein.  I won't bore you (or exhaust myself) with the details. Throughout it all, Jade has had the highest of spirits -- dancing, stickering everything and everyone in reach, blowing bubbles, running the halls, singing(she has quite a few songs in
her repertoire now), and counting (all the way up to ten!)

Jade autographing a pic
for David Cook.

But it's safe to say, that even with a visit from David Cook (of American Idol fame) today, we are ready to go home! Jade went to sleep last night with an ANC of zero and woke up with an ANC of 230.  If it stays above 200, we're looking at going home this weekend. At 24 or 25 days, that would make this our shortest hospital stay this year!

Thank you everyone for your continued support and prayers.

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 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 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.