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