Day 18, Chemo Round 2 :: Weeks, Not Months

Flashes of Hope captured some sweet moments of our
princess in April.  We thank them. www.flashesofhope.org.

Cord blood may just be the blessing that Jade has coming to her.  Dr. Williams from the Bone Marrow Transplant Team stopped by yesterday to share an update with us.  They have not yet been able to identify an adult bone marrow donor for Jade. There were four adult donors who were in the registry who had a 3-4% chance of being an 8/8 HLA (human leukocyte antigen) match for Jade, but they have been removed from the registry. They have reached out to an additional 12 adult donors who have the potential to be a 7/8 HLA match for Jade, but have not received any responses.  This rate of unresponsiveness is very unusual.

The search for an 8/8 or a 7/8 adult marrow donor match for Jade will continue, but not forever.  Just doing additional rounds of chemotherapy while we wait/hope/pray/beg for an adult marrow donor that is a match for Jade to join the registry is not an option.  Chemotherapy is toxic and would eventually take its toll on Jade's organs, her body, her spirits.

We have weeks, not months. Jade is tentatively scheduled for a transplant in early July. Her immune system markers will continue to be typed against any new donors in the registry daily until then. You can find a bone marrow drive near you by clicking here.  If an adult bone marrow donor match is identified in June, she will have a bone marrow transplant. If not, we will proceed with a cord blood transplant. They HAVE identified a 5/6 cord blood match for Jade already. (I will post more on the pros and cons/positives and negatives/strengths and opportunities of each on Monday).  I don't know. It's impossible to know. But, maybe this is Jade's blessing, her cure.

Thank you for checking in on Jade, who is in fabulous spirits, for your continued encouragement and support. 

Day 16, Chemo Round 2 :: Amazing

Doctor Jade spells her name in the Art Room.

By looking at her, you'd never know Jade's hemoglobin level was nearly half of where it should be. Hemoglobin carries oxygen throughout the body; low levels are generally associated with fatigue.

The doctors decided that since she looked "so amazing," i.e. still running up and down the halls, sneaking into offices of unsuspecting nurses and shouting "Boo!," and breaking into cheers in the Art Room, that they would wait to do the blood transfusion until over night so that Jade could stay unhooked and continue to play during the day.

A month or so ago when we had our sit-down with the Bone Marrow Transplant team, the docs also told us that maybe only once in history has a bone marrow appeal/drive resulted in the targeted patient finding a match.  But we are faithful. We're going to try to keep this "amazing" thing going.  www.bethematch.org.

Thanks for checking in on Jade and keeping her cure and the cure in your prayers!

Today's Counts:
Hemoglobin: 6.9 (blood transfusion)
Platelets: 36 (down from 70 after Monday's platelet transfusion)
ANC: 0

Day 12, Chemo Round 2 :: Bravely Waiting

A little cheer while we wait for a match: "I'm brave! I'm strong! I'm ready for whatever comes along!"

Much to my amazement and that of the 4 East staff, this is Jade's energy level on a good day. From the moment she wakes until the time she goes to sleep (approximately 12 hours later.) And today was a great day, with an awesome play date with big brother extraordinaire and our friends Michele and Monica, Grandma Tay's coming into town, and, of course, Daddy's turn for an overnight stay.

Thanks for checking in on Jade, for your prayers for a cure, for your willingness to sign up as a Bone Marrow Donor. Be well!

Today's Counts
Hemoglobin: 8.9
Platelets: 27
ANC: 0 (today is the first day at 0)

Day 10, Chemo Round 2 :: Where Is Our Match?

Small victory! Jade agreed to wear a mask during the weekly dressing
change for her central line after eight refusals over the past two months,
a slight complication to what should be a sterile procedure.

When the nurses and doctors are coming to Jade's room to request a performance of  "Let It Go," see her never give up cheer, or even teach her a new routine, you know things are going relatively well.  Jade happily obliges them each time. What can I say, she loves an audience.

A remark about how great she looks, a review of her counts usually follow, and then we're left to our own devices to pass the time as Jade's system recovers from the chemotherapy... I really am grateful for Jade's stability, for her cheerfulness, for seeing this rock-star personality of hers take form, for every victory along the way, for each of these moments. I want more of them for her and for us. So, I can't help but want to be having another type of conversation at this point: "We've found a match," "The donor is scheduled to come in," or "Jade's admission date for the transplant will be..." Soon, I pray.

Where is our match??

Thank you for signing up for the bone marrow registry.  If you haven't already, please visit www.bethematch.org. Thank you for your continued encouragement and prayers for a cure!

Today's Counts
Hemoglobin: 6.9 (this prompted a blood transfusion)
Platelets: 82
ANC: 140 (this is still dropping, it has not yet hit zero yet)

Day 6, Chemo Round 2 :: Never Ever Give Up!

Jade channeled her inner cheerleader when she received a Power Pack from the Jessie Rees Foundation to spruce up her hospital room and broke into a full-on cheer routine.  "Never. Ever. Give. Up!"  The cheer heard 'round the unit.

She was soooo excited that the staff couldn't get an accurate blood pressure or heart rate for most of the afternoon. (150 for her heart rate. Really, Jade?)

Thanks for your encouraging thoughts and words; Jade is glad we are all on the same page. 

Day Five, Chemo Round 2 :: So Far, So Great

Along with starting her second round of chemo for this course of treatment, Jade has been line dancing, sprinting, and belting out performances like this all week long:

Now, I thought only celebrities on tour came with riders, but apparently Jade also has a list of demands for her hospital stays.  They include (in no particular order):

1. Cherry syrup. This, combined with holding her nose, makes taking most of the "yucky" oral meds bearable.
2. A night-night story and a wake-up story from her growing library.
3. Comfy blankets, pajamas, and pillows from home; hospital-issue linens will not do.
4. A mini-fridge stocked with crangrape juice, orange juice (not from concentrate), and watermelon spears.  
5. Access to Facebook and Facetime. Jade loves to put a face to all of the names of people who are rooting for her.
6. Kidz Bop in heavy rotation.
7. Take me to the bathroom! With fluids running 24 hours, trips to the potty are frequent. (I kid you not, there were 18 such trips during Jade's waking hours yesterday.) Jade would rather conserve her energy for line dancing and running through the halls.
8. Nurses are also asked to count to four. No, eleven... Actually, 100 before administering the eye drops. (A shrewd stalling tactic that Jade has developed in an attempt to avoid the every-three-hours eye drops.)
9. There should be no mention of the overnight diapers that are more or less required while she is on fluids and has chemo in her system. It's a big girl point of pride.

 ... A really small price to pay for her comfort and happiness.

Thanks for checking in and keeping Jade in your prayers.  

Today's Counts:
Hemoglobin: 8.1
Platelets: 200
ANC: 8500 (This is not a typo; this is a result of her receiving the GCSF, neutrophil growth factor, for five consecutive days. The purpose is to encourage any leukemic cells that may be "hiding" to develop and show themselves now so that the chemotherapy can destroy them.)

Round 2 Starts :: We're Back

Jade literally did running laps around the unit when we returned -- high-fiving the nurses; questioning, with hand on hip, the art room's being closed due to a meeting; tackling her favorite male nurse; and recapping her time at home: I played hide and seek, I rode my bike, and my head got wet (baptism.)

Her primary physician had to catch up with her in the playroom -- and close the door so that she wouldn't run out during the brief physical exam. She was so happy, full of energy, and not about to stay in her room to take care of pesky little admissions details.

This round will be identical to the first, minus one chemotherapy agent. (She won't receive the daunorubicin this time. That's the one that can cause heart damage in the long-term.)   For six days, this will be Jade's routine:

12am: vitals, steroid eye drops
3am: artificial tears
4am: vitals, blood draw for daily labs
6am: steroid eye drops
8am: oral meds
9am: artificial tears
12pm: vitals, steroid eye drops
2pm: 4 hour filgrastim infusion
3pm: artificial tears
4pm: oral meds
6pm: steroid eye drops
7pm: 30-min chemotherapy infusion
8pm: vitals, 3 hour chemotherapy infusion, artificial tears

9pm: artificial tears

Then we wait the 3-4 weeks that it typically takes for her immune system to recover, praying for no fevers or infections, for the chemo to keep doing its job and keep the leukemia away, for a bone marrow match.  Have you signed up for the registry yet? Just curious. www.bethematch.org. 

Thanks for your continued prayers for Jade's complete healing, for a match, for a cure.

Let It Go... Locks of Love

I've been writing thank yous when I can, but the words never seem to capture just how awed we've been by your support nor the magnitude of our appreciation. Yes, to some extent, we all expect family and friends to rally in times of need. But to have the children of my sister's colleagues send hand-made get well cards to Jade, or to learn from a neighbor that, in our absence, she has literally just been placing her hands on the side of our house - praying for us, or for notes, packages, and words of encouragement to literally come from around the globe... you don't expect that. I didn't expect that.

So, today I walked into a salon (the likes of which have not seen me in an unspeakable number of years) and cut off 18 inches (or so) of hair to donate to Locks of Love, a worthy organization that provides hairpieces to children under the age of 21 who are suffering from long-term medical hair loss from any diagnosis - as a tribute to Jade and all of you who are rooting for her.

Jade's at an age where the loss of her hair hasn't caused her to skip a beat; but there are older kids, children we see on the unit or teens we see in clinic, for whom the hair loss is a game changer.  Maybe, just maybe, these four ponytails will be a blessing of restored confidence for the young one receives it. This is the least I could do. I have been asking and hoping for so much from so many for Jade -- a bone marrow match, blood, prayers, encouragement. I thought that I was giving all that I had, that after all we're doing -- for Jade, Jaytoe; to preserve our family -- that there was nothing left. But, there is much more that I have to give.

Sure, Jade wanted my "old hairstyle back" when she first saw me.  But when I explained that it might make a big kid, who had lost their hair, happy and that it was actually my Iridessa hair (of Disney Fairy fame), she was on board.

Thank you for your continued prayers for Jade and all those affected by cancer. 

A Room Without A Roof (Happy!)

If you were wondering what a room without a roof looks like... it's this!

The Minimal Residual Disease test, which looks for even the smallest trace of cancer, is back and there is NO evidence of leukemia in Jade's bone marrow after one round of chemo.

That potential hurdle of Jade not being eligible for a transplant because the leukemia is too prevalent in her body - GONE! We celebrated by rocking out to Pharrell's Happy, running around the yard a few times - picking a few dandelions and wishing on them, and even riding our bikes to the end of the block. (Yes, we were just showing off at that point.) Jade has not been this  energetic and uninhibited for nearly six months. THIS is the Jade I know.  

Oh, yeah. Apparently Jade is going to have curly red hair and design video games when she grows up. Her unprompted words.

Thanks for checking in on Jade.  Thank you for your continued prayers as we head back to the hospital on Monday for a second round of chemo to make sure the leukemia stays gone while we await news of a suitable match for Jade's bone marrow transplant.

Happy IS Healthy!

If Jade's at home, she is sans pants 90 percent
of the time... Not sure why.

We have been so thankful for these four fever-free, glorious days at home of -- hiding and seeking, painting, wii fitting, line dancing, perfecting our silly faces, waking up on our own volition, catching up on Saturday morning cartoons, reading stories with big brother and embellishing on them afterwards to make our own, bonding with new pet fish.  Jade's bald head and central line bandaging are the only tell-tale signs of the leukemia that she is fighting once again. She has been bounding through the house after her brother (much to his dismay), ambushing Mommy with big brother and snoballs in hand, and doing the cha-cha slide like there's no tomorrow.

She is so happy.
And when she's happy, we are happy.
And happy is healthy.

I was reminded of this by another brave family whose five-year-old is beginning her third battle with cancer. Sometimes I lose sight of that and obsess about numbers and counts.  But Jade's happiness really is more important; a good report from the lab is comforting, but Jade's liveliness, her spirit is what really energizes us... And we have been plenty energized these past few days!

Armed with the knowledge from the doctors that treating relapsed AML is more difficult than treating regular AML, we went back to CNMC today for a scheduled lumbar puncture (spinal tap) with intrathecal chemotherapy, and bone marrow biopsy and aspiration. Still hopeful. Still faithful.  The lumbar puncture tests Jade's spinal fluid to determine if the leukemia is present there; it also gives an opportunity to inject "just-in-case" chemo to prevent or kill any leukemia that might be present.  Jade's lumbar punctures have always been negative, even back in 2012, so we pray this continues to be the case. The bone marrow biopsy will let us know how effective the chemo has been.  The preliminary results from the biopsy show 2% blasts in her bone marrow.  Blasts are immature, blood-forming cells; anything less than 5% is considered normal.   This is reason to celebrate, but we still need to wait up to 48 hours for the more detailed analysis of the blasts to determine whether they are normal or leukemic.

Lord, let these 2% blasts be normal cells, the kind that are found in recovering bone marrow. That was my prayer when we got the results, will be my prayer tonight, and hopefully yours too.  Thanks for all of your support and encouragement... Off to enjoy more time with the kiddies -- we are scheduled to be together until Monday (after Mother's Day!!), when Jade will be readmitted for the second round of chemo.  

Today's Counts:
Hemoglobin: 9.4
Platelets: 171
ANC: 930 

Saturday Morning Cartooning

Day 31, Chemo Round 1 :: Home, At Last

Happiness is... waking up this morning with knees in my back and breath in my ears.  After thirty-one days in the oncology unit, Jade is finally getting a break from treatment and my babies are up to their usual antics of waking me prematurely.

The doctors decided to let Jade come home after her ANC tripled overnight to 330 -- shocking just about everyone.  Sure, there was a little bit of a scramble to make sure our home visitation nurse was secured, medical supplies delivered, prescriptions filled, but those are very small things. WE ARE HOME! (I wish I could have captured Jade's shrieking and running up and down the halls when we told her that she was going home, but I was too busy questioning what the doctors were telling me - is it normal to see the ANC take such a big jump overnight, do healthy neutrophils reproduce that quickly, would she still need a double dose of the growth factor before discharge, etc?)

Jade is still at high risk for infection (a normal ANC is in the 1500 range), so we won't be heading out to the library, scheduling play dates, worshiping as a family at church, or anything like that.  But, we will be very happy home-bodies. 

We head back on Tuesday for a bone marrow biopsy to see how well the chemotherapy worked (relapsed acute myeloid leukemia is typically harder to treat) and find out our readmit date.  Until then, we'll just enjoy being in our space and undoubtedly in each other's spaces.

Thank you for your continued prayers for Jade... for a cure. Cancer is a beast.

Day 30, Chemo Round 1 :: Cheese Day!

Mac-n-Cheese says "Cheese" with one
of her favorite nurses.

Doc: What did you do for Cheese Day?
Jade: I was macaroni and cheese.
Doc: Oh, you had macaroni and cheese?
Jade: No, I was macaroni and cheese.

This was an actual exchange between Jade and one of her doctors. Today was Cheese Day, a special celebration put together by family and friends in honor of Rachel, her love of cheese, her big heart, her wild sense of humor.  I remember Rachel. Eight or nine years older than Jade, she blew bubbles for Jade in 2012, sang with her in the art room. There were cheesy jokes posted all throughout the unit, staff and volunteers decked out in cheese ties and hats, cheese crafts and trivia, cheese and crackers, cheesecake, a photo booth (say "cheese"), and pizza... of course.  Today, Jade donned one of the mac-n-cheese costumes that were gifted to the younger kids on the unit... and worried that someone would try to eat her.

There was another reason to celebrate ... Jade's ANC jumped to over 100.  We may actually be heading home this weekend for a break before the next round of chemotherapy starts if Jade's ANC keeps rising at this pace!

Thank you for your prayers for a cure for Jade and for all those affected by cancer.

Today's Counts:
Hemoglobin: 9.1 (holding steady)
Platelets: 53 (up from yesterday's 42)
ANC: 110 (!!!!!)
Monocytes: 15