Day 24, Chemo Round 5 :: ANC On the Rise

An "all clear" from ophthamology and a rising ANC -- we are so thankful.  We just need Jade's ANC to keep rising (and for her constipation and mouth sore to resolve) so we can head on home! Thank you for continuing to keep our little girl in your thoughts and prayers.


Today's Counts
White Blood Cells: 0.2
Hemoglobin: 9.3
Platelets: 22
ANC: 10

Day 23, Chemo Round 5 :: The EVAN Foundation

Wednesday nights rarely disappoint Jade; they are, after all, Treat Cart nights, when all of the patients on the oncology floor are visited by the EVAN Foundation's Treats and Treasure Cart.  Sunglasses, puzzles, bracelets, necklaces, books, wands, a tiara -- all reasons that Jade looks forward to the Treat Cart.

Evan's Victory Against Neuroblastoma (EVAN) Foundation is the labor of love of two parents who lost their only child to another rare form of pediatric cancer, neuroblastoma, less than two years ago.  Since then, they have dedicated themselves to fighting for a cure everyday by raising awareness, and supporting research and patient wellness programs (like the Treats and Treasure Cart.)  www.theevanfoundation.org 

Jade and Madison take to the halls in their princess fare
after a recent visit with  the EVAN Foundation's Treats and Treasure Cart.

I hope that one day, after Jade's treatment is finished, we will find some way to give back and support other families who have been affected by pediatric cancer. Thanks for checking in on Jade and keeping her lifted up in your thoughts and prayers.

Today's Counts

White Blood Cells: 0.2

Hemoglobin: 9.3

Platelets: 34

ANC: 0

Day 20, Chemo Round 5 :: ANC Still Zero

After a blood transfusion on Friday and platelet transfusion Saturday morning, Jade had a pretty quiet weekend. Patiently waiting for counts to recover and praying that the rest of this stay is uneventful!

Today's Counts:
White Blood Cells: 0.21
Hemoglobin: 10.3
Platelets: 72
ANC: 0

Day 16, Chemo Round 5 :: What Big Eyes You Have!

My phone/camera threw the towel in
today, so enjoy this "oldie but goodie"
until I get back up and running.
Jan. 30, 2012... Jade sporting shades
and 'fro 25 days into first hospital stay.

Progress! Jade willed her eyes open after yesterday's visit to the opthamologist, and now she won't even close them to take a nap during the day.  Being restrained by three adults and having eyelid specula inserted in her eyes to keep them open for an exam just wasn't worth it in the end, I guess.  After wrapping Jade's body tightly in a hospital-issued sheet and enlisting my help and that of two other doctors to keep Jade still, the opthamologist advised me that most parents look away for this part (the insertion of the specula).  A few minutes later though, with the help of a hand-held slit lamp microscope, the opthamologist reported that Jade's left eye was almost completely healed and there was only light "roughness" to the right eye which should resolve within a day or two.  They will continue the erythromycin ointment to help prevent any infection in the eye, but we've already claimed that tomorrow's opthamology visit will show Jade completely in the clear.  We're so happy to see those big, beautiful eyes open again! Now, on to finding something other than coloring with our eyes closed, listening to cartoons, and walking into walls to pass the time.  Thanks so much for keeping Jade in your prayers and for all of your encouraging words.  

Today's Counts:
White Blood Cells: 0.2
Hemoglobin: 7.6
Platelets: 38
ANC: 0

Day 14, Chemo Round 5 :: Open Those Eyes!

Sunglasses Galore!
Once a fashion statement,
now a medical necessity
to keep out some of the extra
light entering Jade's eyes. 

So, false alarm.  It wasn't chemical conjunctivitis... it's corneal abrasions on the surfaces of both eyes.  That's why Jade has been keeping her eyes shut for four days now.  The scratches themselves hurt, but they also let too much light enter the eye, which can also be uncomfortable. An opthamologist examined Jade this weekend (after dropping an anesthetic and dye into her eyes) and discovered the scrapes.  The eye drops were discontinued (no more applications every two hours) and replaced with an antibiotic ointment that's applied to the inner eyelids three times a day with pain medication as needed.  Typically, they would patch the eyes, but since Jade has been keeping them sealed herself and we keep the lights dim in her room or sunglasses on her, no patch is needed.


The scrapes usually resolve within 3-7 days, so we're hopeful that the abrasions and photophobia will all be behind us before the end of the week. Jade still isn't opening her eyes, but she's in much better spirits and, after sleeping away most of the weekend, was up to some of her old tricks today. In fact, her stubbornness and refusal to hold my hand whilst we walked the halls won out a few times today, ultimately resulting in her walking into a couple of walls. Not to worry though, no harm was done.  Visits from the art therapist, music therapist, Ms. Jill (with yummy veggie lasagna and zucchini bread),and Grandma helped lift her spirits (and appetite) even more!  

Today's Counts:
White Blood Cells: 0.16
Hemoglobin: 8.8
Platelets: 102
ANC: 50

Thanks for keeping Jade in your thoughts and prayers.

Day 11, Chemo Round 5 :: Eyes Wide Shut

Today was a pretty rotten day.  Jade spent most of the day in the dark, refusing to open her irritated eyes.  "Too hot!" she said. Jade literally only opened her eyes for eight brief moments today. And though she made an appearance in the playroom and even took a short, guided walk through the halls (albeit with her eyes sealed shut), Jade's inflamed eyes ultimately translated to more naps and even more time in mommy's arms.   

One of the side effects of the high-dose cytarabine that she received this round is chemical conjunctivitis.  When the nurse forcibly pried her eyes open, they didn't appear to be pink, but the irritation to her eyes is clear based on her behavior.  There was no amount of coaxing that we could do -- with the ipad, child life specialist, puzzles, paints, "gummies," and other treats -- to get Jade to open her eyes. So, the doctors have increased the frequency of our beloved eye drops to every two hours (that's around the clock... regardless of who's sleeping or not) and extended the duration (we were supposed to end Saturday morning at 5:30). 

Today's Counts

White Blood Cells: 0.17

Hemoglobin: 9.4

Platelets: 49

ANC: 40 (still haven't hit zero yet) 

Thanks for checking in on our munchkin; your thoughts and prayers are much appreciated.

Day 9, Chemo Round 5 :: Play Date

While Jade and I miss her brother terribly, she found some friends to help pass the time this round... including her very own "twin," who celebrates her birthday on April 7th (the day after Jade's).   Jade and three-year-old Madison took to the halls this week -- in matching headbands (unplanned) and sunglasses -- after meeting up with Madison's older brother and the three younger brothers of another brave transplant patient in the art room. To say that there were beads, feathers, paint, crayons, markers, and dominoes everywhere would be a bit of an overstatement, but I do think I may have heard an audible sigh of relief from the Art Therapist when lunch time arrived and the children filed out of the art room and into the halls. 

Brave girls and super sibs. 

We thank you for keeping Jade in your thoughts and prayers, and ask that you add Madison, who is scheduled for a stem cell transplant any day now, to your prayer lists as well. Unimaginable bravery...   

Jade's counts today:

Hemoglobin: 9.1

Platelets: 88

ANC: 90

Day 7, Chemo Round 5 :: We're Back...

Heading to the hospital for round 5,
 Jade was underwhelmed.

 Sorry for the silence, friends.  This family has been on quite the roller coaster ride these past few weeks marked by the highs of enjoying Jade's unexpected three week stay at home, celebrating Lil Jay's eighth birthday, spending quality family time at home... and the lows: sending Lil Jay to Boston, three bone marrow biopsy appointments and inconclusive results.

Gracefully, the 2% blasts that appeared in Jade's June 29th bone marrow biopsy were only precursor cells.  Because each of Jade's biopsies since her chemotherapy regimens began in January have come back with less than one percent leukemia cells, this apparent increase (however slight) was alarming and delayed Jade's being able to proceed to Round 5.  (If these were indeed leukemic cells that were being produced after four rounds of chemotherapy, Jade's treatment plan would have needed to be intensified.)  Jade went back in on July 6th for another biopsy; her doctors believed another week would either give immature cells an opportunity to mature into one of five types of white blood cells or for leukemic cells to increase in concentration and define themselves.

Jade plays with her
True Hope hairless doll
by Bratz, a welcome back
gift from the team here.

Preliminary results from Jade's July 6th biopsy also showed suspicious cells, but her marrow was ultimately cleared -- less than one percent leukemic cells -- after being sent out to labs in Nebraska for flow cytometry and cytogenetic testing. Jade's system is recovering more slowly than in previous rounds (I guess four rounds of chemotherapy will do that to you) and skewed these biopsies; the suspicious cells that were appearing in Jade's marrow were apparently precursor cells that are maturing. Thank God!

And so, we returned to Children's National Medical Center a week ago to begin Round 5 of Jade's treatment plan. Three-hour IV infusions of high-dose cytarabine twice a day and intramuscular shots (right in Jade's fat legs) of asparaginese are on deck this round, in addition to the typical slew of oral antibiotics and antifungal medications.

Nearly 200 days into this journey, thank you for your continued prayers and support.

End of Chemo Round 4 :: Home!

After 37 long days -- complete with two medicine mix-ups and a mix-up at the pharmacy that resulted in the premature discontinuance of one of Jade's meds -- we're happy to have headed home with our energetic little girl.  We are grateful for this break from the hospital, for this room to breathe and this time together as a family...  I sense a family sleepover coming on...  Jade is scheduled for a bone marrow biopsy on Tuesday; we'll keep you posted.  Thank you all for your continued prayers and support.

Day 18, Chemo Round 4 :: Flashes of Hope

Hemoglobin: 8.1

Platelets: 45
White Blood Cells: 0.68

ANC: 0

Overall, Jade's counts are continuing to trend downward so it looks like we'll likely have a couple of transfusions next week.  But, while we wait for her body and immune system to recover from this round of chemo, we received a professional portrait package from Flashes of Hope, a nonprofit that changes the way children with cancer and other life threatening illnesses see themselves through the gift of photography.

Before Jade was diagnosed, she spent entire days being held -- by me, daddy, Papa Frankie, Grandma, Sata, Pinky, Rev. Reeves -- trying to fight an illness of which we were completely unaware.  Jade's mood during this April photo shoot was slightly reminiscent of those days: she was a little clingy, a little cranky, and still a bit tired from the treatments and would only cooperate in my arms. The truth is that I would hold her all day every day if needed (and if she would let me!), so I'm grateful to Flashes of Hope for capturing these moments with Jade in mommy's arms. Thank you for continuing to keep Jade in your thoughts and prayers.