Day +1,414 !!!! :: Prayers Answered

https://www.facebook.com/superfriendsforjade

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.