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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Day +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.

Day +34, BMT :: The Homecoming That Wasn't

It's true; Jade is still at the hospital.  When Saturday rolled around, Jade was prepared to do her final set of vital signs before discharge and... she spiked a fever. So, the picture of home from her daily calendar was discretely erased, the bags came off the cart and we hunkered down for an extended stay. The two days that we had hoped for when we brought her into the Emergency Room last Monday after we had just unpacked at home has now ballooned into two weeks.

The fever resolved itself within two hours, but the alarm had already been sounded. Blood cultures and antibiotics were on deck. And the team had already started searching for answers - maybe Jade's transition to the oral steroids, which are not as effective as IV steroids, was indicative of too low of a dose.  Perhaps the rash that wasn't responding to the steroids as quickly as expected -- and persistent loose stools -- were a tell-tale sign of graft versus host disease (GVHD) lurking somewhere in her gastrointestinal (GI) tract.

So, in addition to Jade's bone marrow aspirate and biopsy that were performed on Monday, about a dozen other studies, cultures, tests and scans have been completed or scheduled. Thankfully, the preliminary results from the bone marrow biopsy look good and several infections have been ruled out, but it hasn't eased the team's concern about the possibility of what still appears from the outside to be a mild case of GVHD spinning out of control into a serious case that would be difficult to treat.

Jade is tentatively scheduled for upper and lower endoscopies, procedures that will allow the doctors to actually see the inside lining of her digestive tract and take some samples from within, on Friday, August 8 to help determine if the GVHD is affecting her gut. No definitive timeframe on her discharge either; I wouldn't believe it til we were actually home anyway! For now, we are just focused on keeping Jade happy and engaged... and fulfilling her steroid-inspired requests for hot dogs at breakfast and Cherry Garcia at midnight.

Thank you for your encouragement and for your continued prayers for Jade and for a cure.

Day +29, BMT :: 100% DONOR!

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

 

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

 

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

 

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

 

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

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

 

Thank you for continuing to lift Jade up in prayer!  

 

http://www.facebook.com/superfriendsforjade

 

#smilingforme #bravestrongready #day29

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

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

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

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

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

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

How did we get here?

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

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

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

So, Jade is home!

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

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

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

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

MUCH LOVE!

#superfriendsforjade

Day +18, BMT :: Engraftment!

I know it looks like Jade is just sleeping,
but she is actually engrafting! 

"Mommy, I can do it in my sleep." Diaper changes, (some) oral meds, and apparently engrafting. Jade officially engrafted this weekend.  What does that mean? While Jade has been sleeping nearly 18 hours a day, her new blood-forming cells have started to grow and make healthy blood stem cells that are showing up in her blood. The criteria for engraftment is to have an ANC greater than 500 for three consecutive days; Jade reached that milestone over the weekend.  Today, Jade's ANC is 1120. 

With all of the swabs and cultures finally back, and all negative, Jade was also taken off of contact isolation and off of droplet (airborne) isolation today.  (Now, the staff doesn't have to get all decked out with masks, gowns, and gloves before entering the room.) All of her antibiotics have been discontinued.  And we're going to begin to wean her off of the TPN (IV nutrition) and encourage natural eating with an appetite stimulant. We even have a tentative discharge date: Monday, July 28, 2014.  That's right!  Home is on the horizon.  Granted, we will have to come back to the hospital every other day as part of the intense follow-up plan for bone marrow transplant patients, and any sign of a fever, new pain, new rash, diarrhea, or inability to take liquids by mouth over the next three months will result in an emergency visit, BUT we can do that.  After all, look at what God's done already, look at how far Jade has come! 

We do have somewhat of a task list that needs to be checked off before we reach Jade's discharge date, but again.  We will get this done too! Just a little something to keep us busy. 

Jade's To-Do List
Achieve an ANC of 1,500 and maintain it for three days
Maintain platelet levels above 10 for at least three days
Maintain hemoglobin levels above 7.0 for at least three days
Have an unremarkable echocardiogram on Thursday
Take all daily medications by mouth (at minimum, she will be discharged taking amiloride, cyclosporine, voriconazole, periactin, bactrim, mycophenolate mofetil, ursodiol)
Complete her steroid regimen and remain fever free (after Jade spiked another high fever of 104 when the steroids were discontinued, the team decided to have her complete the typical seven-day regimen)
Have no active, uncontrolled infections or other serious problems. Increase eating and drinking

Our To Do List
Clean house (damp dust house, relocate plants to an area of house where child will not spend a lot of time, minimize clutter, etc.)
Clean carpets
Clean/change heating-air conditioning ducts and filters
Clean all washable toys with soap & water or in washing machine; put other toys away
Secure reliable transportation to outpatient clinic appointments three times per week and just-in-case for emergency room visits (remember when my car gave out on me just one week into her treatment plan... it was the transmission.)
Check for any mold, mildew or water damage. Remove mold if present; repaint any walls with peeling paint.
Confirm home care visits.

Thank you for checking in on Jade and for your continued prayers and encouragement in the weeks and months ahead.

Day +13, BMT :: Roid Rage

Day 13 +: Puffy, itchy, and swollen,
but playful (at the moment).

One moment Jade was throwing an uncharacteristic FIT, yelling vehemently at the physical therapist (she wasn't going to wiggle her toes, raise her hands, stand up, or walk... for ANYONE).  But before I knew it, she was doing the cha-cha slide and asking for a slice of pizza.  Apparently, this is what my four-year-old looks like on steroids.

The team decided to put Jade on a steroid regimen after she had seemingly maxed out on antibiotics -- she was taking ceftaz, vancomycin, tobramycin, and azithromycin.  All to no avail; none provided any relief during five days of persistent fever, rapid heart rate, elevated respiratory rate, an itchy rash that covered Jade's entire body, swelling, incontinence, nausea and vomiting, complete loss of appetite, and sleepless nights.  Most, if not all, of Jade's symptoms are also consistent with engraftment syndrome, which is normally treated with steroids. But a cat scan on Monday showed a potential pneumonia in the right upper lobe of her lungs. Needless to say, this caused some hesitation to start the steroids. No one would want to embolden a potential infection like pneumonia with Jade's weakened immune system.  Ultimately the team decided that with the worry of a pneumonia, instead of the typical seven-day regimen, Jade would get a two-day course of steroids. The team will reevaluate before week's end.  

Less than 24 hours into the steroid regimen, Jade is fever free!  Her heart rate and respiratory rate are in the normal range.  The rash that covered her back, necks, cheek, arms, and legs appears to be receding. Her appetite is also recovering and she has been drinking like a sailor, even taking a few oral medications.  And her ANC, absolute neutrophil count, which is a measure of how well her immune system can respond to and fight bacteria, IS RISING!  On Sunday, her ANC was zero; by Wednesday, it was 450.  We know the road to complete recovery will be a long one, but we are grateful for Jade's leaping over this hurdle. 

Thank you for checking in on our girl and for continuing to keep her recovery and her cure in your prayers. Your prayers that her body will fully embrace the new cells she received on July 3rd are appreciated.

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 0 :: Transplant Day!

Ready for a fight!

It's hard to convey to a four-year-old who is about to have a cord blood transplant the magnitude, the gravity of the experience they are undertaking. We speak about new cells and bad cells, good guy cells that fight bad guy cells. But that this is life saving, that it is super important, that almost everything else she does in life will pale in comparison? How do you do that? You treat it like a birthday, because almost nothing matters more to a four-year-old.  So, that's exactly what we did. After the pre-transplant fluids were hung, allergy medication ordered, and emergency bedside medications delivered, we turned up the music and celebrated.  Celebrated no more chemo, celebrated new life.

Let's Get This Party Started

This is what 65ml of life-saving
stem cells look like.

Jade couldn't wait for the Child Life Specialist to bring the party to her.  At noon, she insisted that we crank up the music. If you know Jade, you know Kidz Bop was in heavy rotation. She proceeded to dance for an hour straight, grabbing our hands and pulling us to the dance floor one by one. The Child Life Specialist arrived with friends in tow, a celebratory banner, and even more dance moves. We even had cupcakes, albeit pre-packaged Little Bites since bakery items are not part of Jade's low-bacteria diet.

At about 1:30, the Tylenol, Benadryl, and Hydrocortisone were brought in to help prevent a reaction during the transplant. Jade settled down, seemingly all danced out, and tuned in to her obligatory Thursday Hospital Bingo. Halfway through the Bingo game she climbed up into my lap and dozed off.

The Transplant

Wonder Jade and mom...
knocked out!

Unlike many other transplants, cord blood and bone marrow transplants are much like the blood and platelet transfusions that Jade has had over the years.  Anesthesia is not involved; it takes place right in the patient room; and the patient can be awake, alert, and even mobile if they wanted. At approximately 2:30pm, the nurses ceremoniously entered the room with a bag of donor cord blood, hung it from her IV pole, hooked Jade -- who was still slumbering safe and snug in my arms -- up to the cardiac monitor, pulse oximeter, and blood pressure cuff, and began the drip.

The hospital chaplain stopped by and lead us in a family prayer... I then dozed off with Jade.  (Auntie Shameika and Grandma kept their eyes open though to ensure everything went according to plan.) One hour later, the transplant was complete and thankfully uneventful. No fever, no spikes in blood pressure, heart rate, etc. Jade slept for about another hour, waking to say, "I'm ready to get this party started."

The "Honey Moon"

Ready to party... again!

With the exception of nausea, Jade has been doing extraordinarily well in terms of her energy, playfulness, appetite, and attitude. (You've seen the pics!) From everything that we've read and from what the team says, however, she will "crash" pretty soon and start feeling the effects of the shock that her system has gone through. We will be watching for signs of mouth and throat pain, nausea and vomiting, lung inflammation, fever, and infections caused by bacteria, fungi, and viruses while praying that the new cells truly find a home in Jade's body and that these side effects impact Jade minimally or not at all.

Thank you all for your support, for truly being super friends, and for continuing to keep Jade, her cure, and her recovery in your prayers. 

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 -2, BMT

Today marked what could be Jade's last dose of chemotherapy EVER! The team began replacing her chemotherapy meds with anti-rejection meds to help ready her body for this amazing gift of healthy cells. So, after eight continuous days of high-dose chemo, the last four of which have been nausea-filled, Jade will have one day of rest before the BIG transplant day - July 3, 2014. 

With the exception of three drugs, most of Jade's medications were switched from oral form to IV, given her nausea over the past few days. Acupressure bracelets were added today, on top of the four (yes, four) anti-nausea meds that she is taking just to help get this nausea under control and give her a real chance to eat and keep down some of the more important oral medications. Whether it was some combination of the meds and the bracelets, or the chemotherapy leaving her system, Jade got some relief later in the day. And we were all able to enjoy that trademark spirit of hers -- singing along to Frozen with reckless abandon, competing fiercely with her big brother on the Wii, and butchering knock-knock jokes.

It is hard to believe that the day is almost upon us. This could be her cure. This will be her cure. 

Thank you for checking in on Jade and for keeping her in your prayers and thoughts. www.facebook.com/superfriendsforjade  #bravestrongready

Day -6, BMT

What?!? Only 6 days until my cord blood transplant?

Jade has been in GREAT spirits these past few days. While she does make regular inquiries about leaving her room, she is making the best of it -- tapping on the glass window of her room door to invite passersby in. But there simply are not enough volunteers, child life specialists, art therapists, doctors, nurses, etc. to keep up with her level of energy! So far, she has entertained a minimum of five visitors from the staff each day. If you cross the threshold, you will be asked, "Do you want to plaaaaay?"

Today, a couple of the nurses watched in amazement as one of the attending doctors played along sweetly with Jade and her doll house, only for him to knock the doll down into ketchup a few minutes in.  Jade let us all know that it was okay because "accidents happen sometimes."

Tonight, she is finishing up the first half of the conditioning regimen with no visible side effects from the medication... Tomorrow, she starts her final (prayerfully) chemo course... Then, July 3rd : Transplant Day.

Thank you for checking in, for keeping Jade in your thoughts and prayers. ‪#‎bravestrongready‬

Day -9, BMT :: New Rules

New unit. New routines. New rules.

No play room. No art room.
No trips to the meal cart.
No long walks in the hall.
Only one special stuffed animal allowed.
A few personal items and toys allowed (must be specially disinfected; new and unopened recommended).
Books should be new or only used by your child.
No visitors under age 12 (except for her brother).
No balloons.
No playing on the floor.
No sharing food from the same plate.
No fruits that cannot be peeled after washing.
No dried fruits unless they are cooked.
No unpasteurized fruit juices.
No salads.
No raw vegetables or herbs.
No restaurant foods.
No cold cuts.

Even a new way of noting the days. Yesterday was Day -9. Nine days and counting until Jade's transplant.   Despite the few dozen times Jade unsuccessfully negotiated to go for a walk - I'll wear a mask, -  she is all smiles and in surprisingly good spirits. She did have one definitive message for me though: "Mommy, no more new rules." Unfortunately, I couldn't make that promise.

In between her intense medication schedule, Jade spent most of the day getting oriented to the Bone Marrow Transplant unit. Tearing into her "welcome" basket from the Hope For Henry Foundation, breaking in a new toy from Grandma, enjoying a virtual play date with her big brother thru Google Hangouts, line dancing with dad and mom, watching The Pirate Fairy and The Little Mermaid, requesting that Frozen's Elsa visit her and build a snowman, and meeting with the nutritionist, physical therapist, child life specialist, Pediatric Advanced Needs Assessment team, primary doctor. Fortunately, we were able to squeeze in a good night's rest before Jade started on round-the-clock fluids and her daily schedule that consists of nine medications, one to destroy her immune system; eight to prevent or lessen the side effects of the one:

4am: Vital signs
8am: Daily weight and vital signs, Periactin (appetite stimulant)
9am: Busulfan (2 hour high-dose chemotherapy infusion)
10am:  Zofran (anti-nausea), Ursidol (liver protectant), Zantac (decrease stomach acid), Bactrim (antibacterial), Glutamine (mucositis prevention), Keppra (seizure prevention)
11am: Caspofungin IV (antifungal)
12 pm: Vital signs
3pm: Busulfan (2 hour high-dose chemotherapy infusion)
4pm: Periactin, vital signs
8pm: Vital signs
9pm: Busulfan (2 hour high-dose chemotherapy infusion)
10pm: Zofran, Ursidol, Zantac, Bactrim, Glutamine, Keppra
12am: Vital signs
3am: Busulfan (2 hour high-dose chemotherapy infusion)

Some of the meds will stop as her treatment progresses; there are at least six other medications, however, that will be added to this over the course of Jade's transplant stay.  Each with its own share of potential side effects. The busulfan, which is needed to destroy the immune system and ready Jade's body to receive donor cells, has an ever so slight risk of causing seizures in patients. Jade will receive two hour infusions of the busulfan four times a day for four days; she will be on seizure prevention medication for six days. We were told not to worry too much about this because it happens in a very small percentage of cases... Errr... You try sleeping.

Thank you for your continued prayers for Jade -- for her spirit, for her complete healing, for an uneventful but successful transplant.

The Wait is Over

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

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

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

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

Pre-Transplant Work-Up

So, Jade has been knocking out her assigned pre-transplant work-up appointments one by one.  She has been most excited about being able to walk into the hospital and let everyone know that she is "just visiting." You know I'm going home, right? 

Here's what she's been up to: 

Complete Blood Count
Last Monday's oncology blood work looked great. ANC 1000. Platelets 280. Hemoglobin 8.2.

Dental Check Up
Wednesday's dental appointment went well. Jade was actually pretty nervous about going... of all things. She was a trooper in the end, but her anxiety was real. No infections, decay, cavities, or other areas of concern that could "complicate" recovery from a bone marrow transplant.

Echocardiogram & Electrocardiogram
Thursday's cardiology work-up was fairly uneventful.  This was actually the first time that we didn't hold her in our arms throughout  the Echo; she laid there on her own, watching Bubble Guppies. The Echo shows the structure, function, and blood flow of the heart.  The EKG shows how often the heart is beating as well as the size and position of the heart's chambers. Jade's heart is strong, but the scans did show a slight increase in Jade's heart rhythm and size of her left ventricle; this could just be her new baseline or it could be a result of one of the chemotherapy agents that is known to affect the heart.  All is still well within the normal range, so for now, they will just continue to monitor it with serial scans and we are not to worry.

Head and Chest CT Scan
Friday's radiology appointment was more fun than anyone could have expected. Jade sailed through it, not requiring the general anesthesia typically needed for kids her age. She appeared to enjoy every moment of her ride on the CT "waterslide" and having her picture taken in the "donut." We haven't received any news on this yet, but no news is usually good news... And we anticipate going over all of this at Thursday's conference.

Blood Tests
Jade and I visited the Bone Marrow Transplant clinic, which sits in a fairly secluded corner of the Hematology/Oncology  for the very first time on Friday to have a full blood screen carried out. They are checking her blood group, full blood count and clotting levels, specific viruses  and any signs of problems with liver or kidney function. All in all, it required about 15 vials of Jade's blood to be drawn on Friday. Again, we expect to go over all findings at Thursday's conference.

Bone Marrow Biopsy & Lumbar Puncture
Today, Jade had a bone marrow biopsy and lumbar puncture (spinal tap). The procedure went off without a hitch. The team collected the information they needed to determine if the chemotherapy Jade has received so far has been successful in destroying the leukemia and keeping it from returning to her marrow or appearing in her spinal fluid and central nervous system.  She also received intrathecal chemotherapy (injected into spine.) She woke up from the procedure requesting apple juice and honey nut cheerios, and asserting that she was ready to go home. Results pending.

Kidney Function
Jade is gearing up for her last few pre-transplant tests. Tomorrow, she will return to Radiology for a GFR test, which shows how well the kidneys are working. A dye is typically injected into a vein and then a series of blood samples are taken over three to four hours to see how well the kidney filters out the dye.

More blood tests on Thursday will conclude the pre-transplant work-up if the tests continue to come back favorably. So, that's been added to our prayer list - that Jade's body is in fact strong enough and ready for the transplant that will be her cure!

Thank you for checking in on Jade and for your continued support, encouragement, and prayers!
 

Busy, Busy, Busy

A sweet moment between sibs.

Our little girl is at home, doing fabulously, and has quite the two-weeks ahead of her. There will be LOTS of quality time with the family at home and we may even try to sneak in some non-peak hour, outdoor fun beyond the confines of our property line (Capital Wheel at the National Harbor, here we come?) A lot of time, however, will be spent with the team at Children's "really getting to know Jade inside and out" and making sure that her body is transplant ready, i.e. no infections or potential infections lurking ANYWHERE. That translates to about a dozen appointments and almost daily trips to the hospital. (Our normal 35-minute drive was about an hour and fifteen minutes, thanks to heavy rains and rush hour traffic this morning... but we jammed to Kidz Bop the whole ride, so no sweat.)

Still no success in finding an adult bone marrow donor match.  The outreach to the adult donors who are a potential 7/8 match for Jade has been wildly unsuccessful.  (Pick up your phones, people!) So at this point, Jade will likely be getting a stem cell transplant from an umbilical cord blood donation in early July.
We are truly thankful that this is even an option for Jade.  

Thank you for checking in on Jade, for continuing to get those cheek swabs in, and for your continued prayers and encouragement... (P.S. Jade & Co. is on Facebook now: www.facebook.com/superfriendsforjade. It may be easier to follow Jade there. :)

Now, let's see where we can pencil in some fun: 

Date: Monday, June 9^th     

TIME:  10:30AM                                                  Hem/Onc Clinic                 

TEST:  Follow-Up and Blood Work                        4th Floor East Tower

Date: Wednesday, June 11^th     

TIME:  8:30AM                                                  Dental Clinic                 

TEST:  Dentist Appointment                               First Floor Hospital Rm #1650

TIME:  5:00PM                                                  In-Home
TEST:  Follow-Up                                              Johns Hopkins Nursing

Date: Thursday, June 12^th 

TIME:    10:30AM                                               Cardiology Clinic

TEST:   ECHO/EKG and Cardiology Consult         3^rd floor Main tower

Date: Friday, June 13th

TIME:    8:30AM                                                 Radiology Department

TEST:  CT scans                                                2^nd floor Main building

TIME: 12:00PM                                                  Bone Marrow Transplant Clinic
TEST: Social Work Consult – Regina Tosca        4^th Floor East Tower

TIME: 1:00PM                                                   Bone Marrow Transplant Clinic

TEST: Blood work for BMT Testing                    4^th Floor East Tower

Date: Monday, June 16^th

TIME:  8:30AM                                                  HEM/ONC Clinic

TEST: Bone Marrow Aspiration                           4^th Floor East Tower
          Bone Marrow Biopsy
          Lumbar Puncture

Date: Tuesday, June 17^th

TIME:    10AM                                                    Radiology Department

TEST:  GFR                                                     2^nd floor Main building

TIME:    2:00PM                                                 Bone Marrow Transplant Clinic

TEST:   Child Life Consult                                  4^th floor East Tower

Date: Thursday, June 19^th 

TIME:    12:00 PM                                              Bone Marrow Transplant Clinic

TEST:   Consent conference                               4^th floor East Tower

TEST:   Blood Work

Days 24 & 25, Chemo Round 2 :: Can't Knock the Hustle

One of the five-year-olds on the unit who is full of personality set up a Nail Salon in her room. No joke.

$1.00 Top Coat
$2.00 Manicure
$3.00 Manicure with Design
Absolutely No Pedicures
Free for Patients

Jade was her first client.

She got her nails done just in time for ... a trip home!!  Jade's ANC jumped to 260 on Thursday and over 1,000 on Friday.  She is heading home for a well-deserved break before her next admission, which will likely be for her transplant.

We head back to the outpatient clinic on Monday for a follow-up visit and bloodwork (her hemoglobin levels are still trending low, so we hope they'll begin to rise on their own without a blood transfusion).  Next Friday, she will have another bone marrow biopsy performed to confirm that the chemo has continued to do its job and her leukemia is in remission and her marrow is transplant-ready.

But for now, we enjoy each other and remain ever faithful.

Thank you for checking in on Jade. Thank you for your prayers for Jade's match, for our family, for a cure. 

Day 23, Chemo Round 2 :: The Talk

Jade frequents the newly renovated Ronald
McDonald Family Room almost as much
as her beloved Art Room and Play Room!

We don't normally talk in percentages. Maybe because the numbers can be so scary, or because you can make numbers say whatever you want to. Maybe because we are already inundated by new vocabulary, treatment plans, diagnoses, side effects, medications, blood counts. I'm not sure if that's unique to this hospital, this unit, or what. But we don't talk percentages. (That has not stopped me from reading countless studies, books, etc.)

The doctors sat us down a few weeks ago for "the talk." The transplant talk. Heavy on information; light on statistics. We talked again about Jade's leukemia.  About how the fact that it has survived and resurfaced after five rounds of chemotherapy, after more than a year of being in remission means that the medicines that are currently available are not likely to make this leukemia go away forever.  That the medicines/chemotherapy that the oncology team is giving Jade are not strong enough to induce an enduring remission. That Jade's immune system is not strong enough to keep the leukemia in remission.

So, the BMT (Bone Marrow Transplant) Team laid out how we would go about replacing Jade's immune system after the doctors put her leukemia into remission with chemotherapy. It requires finding a suitable replacement, destroying the immune system that we gave her, and introducing a new system into her body.

Step One: Finding a Suitable Replacement
Identifying a donor for Jade consists of matching the Human Leukocyte Antigen (HLA) proteins that are on most of the cells in her body with those of someone else. It's not the same as blood typing. As a matter of fact, the blood type of the donor doesn't matter.  Bone marrow makes blood cells, so after the transplant, Jade would become the blood type of the donor.  8 HLA markers for Human Leukocyte Antigen are reviewed for bone marrow donations. 6 markers are reviewed for cord blood donations. The process for finding out if you are a match is very simple - only requires a swab of your cheek. You can find out more about how you can make a bone marrow or cord blood donation at www.bethematch.org.

Step Two: Destroying Current Immune System
Immediately before the transplant, Jade will be prepped to receive the donor cells with 8 - 10 days of high dose chemotherapy and potentially full body radiation. The chemotherapy and radiation that BMT administers is even more potent than what Jade has received to date.  Jade's system has been able to recover from the chemotherapy that she has received so far. Eventually, her body begins to make white blood cells, neutrophils, platelets, etc. again.  Jade's system, however, will not recover from the BMT chemotherapy. That is the intention... a clean slate ready to receive the donor cells and start anew.

Step Three: Transplant
Receiving the donor cells will look much like the blood transfusions that Jade has become accustomed to receiving.  A bag of the donor cells will be hung from an IV pole and enter Jade's body through her central line. 

Bone Marrow vs. Cord Blood

Still debating this low-tech visual aid for
a conversation of this magnitude... I guess
everything can't be a Prezi.

Jade's best chance for kicking this thing for good is to find a matching bone marrow adult donor, according to her doctors.  Adult marrow has been around the block, is used to fighting off disease, and would likely keep Jade safe from infections, etc. during the roughly 100 days post-transplant when she will be very vulnerable. It would also likely put up a winning fight against any solitary leukemia cells before they had a chance to replicate and take over Jade's marrow. Nip it in the bud, so to speak. The largest risk with adult marrow donations is the potential for graft vs. host disease, in which the donor cells recognize Jade's body as foreign and attack it - with symptoms that can range from a mild rash to organ damage.

If no matching adult marrow donor is identified, Jade will receive a cord blood transplant. Umbilical cord blood that has been donated by parents immediately after birth is frozen and stored in public cord blood banks. The advantage of a cord blood transplant is that these donations are more readily available and that the potential for graft vs. host disease is lesser.  These are "baby cells" that haven't grown up in a body yet and are less likely to see Jade's body as foreign.  The potential draw backs include that there are less cells available for the transplant, that they are baby cells that take a longer time to grow, and that they are not accustomed to fighting off disease or infection. 

There are tons of additional medications that Jade will be on pre- and post-transplant, many potential complications, numerous tests she has to take to make sure her body can handle all of this, but that's enough information for now.  Don't want to overwhelm you.

Thank you for checking in on Jade and for your continued prayers and support.  She is in great spirits, can't believe that there is another (two-year-old) Jade on the unit now, and looking forward to a break at home.

Today's Counts:
Hemoglobin: 8.5
Platelets: 27
ANC: 60