Monday, April 7, 2014

Happy Birthday, Jade! Day 6, Chemo Round 1

Jade and big brother enjoying some
post-party Insta-Snow last week.
"Is everyday my birthday?," Jade asked.
"Yes, we celebrate your birth everyday," I replied.

We actually have been celebrating Jade's birthday for over a week now.  We had a small gathering last weekend with family, Disney's Frozen, and InstaSnow so that we could observe her birthday at home -- away from the baggage of the hospital.  Every day since then, however, Jade has gotten something (or gotten away with something) and we've attributed that to her birthday. Yesterday, Jade's actual birthday, was no different.

Jade was in exceptionally high spirits -- maybe because it was her last day of chemo infusions this round or maybe it was the special birthday visits from Auntie Shameika, Grandma, Pastor Greg and Ms. Joann from Grace Lutheran Church, and Monica and Michelle - the "best babysitters ever," as Little Jaytoe calls them. 

She decorated headbands, found glitter glue, served up some imaginary icecream, took RuffRuff, her new doggie balloon, for a walk through the halls, argued with her brother over the Wii, shared a birthday fruit platter with family and friends... and sang "Happy Birthday," of course. 

Happy Birthday, Sweet Jade!

Thank you for all of your birthday wishes for Jade and for keeping her in your thoughts and prayers.

Friday, April 4, 2014

Relapsed... But Fighting

Jade and big brother extraordinaire making
silly faces for Mommy.
I wasn't sure that I'd ever update this blog again. Over the past 18 months, I had toyed with the idea of posting updates on how well Jade was doing, how feisty and charismatic she has grown to be, how beautifully she is made.  I managed only to eke out a few Facebook posts, sharing glimpses of how much we were all enjoying her remission, enjoying each other, enjoying life. 

But we are here.  Again.  With a relapsed leukemia diagnosis.  Day four of chemotherapy, round one. The same stubborn strand of leukemia has resurfaced. After five rounds of chemotherapy and over one year in remission, we are here with 74% blasts in Jade's bone marrow. After five months of my bringing Jade to the oncology clinic, fearing the worst when the unexplained fevers, joint pain, fatigue, and loss of appetite returned monthly for one- to two-week episodes and then disappeared. After five months of "clean" blood tests, being told that this is not what cancer looks like, and skeptically believing that she was just reacting to one of thousands of unidentified viruses. I knew better, but wasn't ready to face the alternative.  Instead, we gathered for the holidays, sang our hearts out, mastered our alphabet and numbers, painted with our fingers, painted with our toes, celebrated birthdays, applied to pre-school, cooked home-made pizza, baked cookies and cupcakes... and I worried.

Despite the familiarity of the sterile halls, the incessant sounds of whirring machines, and friendly faces (both personnel and patients), many things are different this time around. The treatment plan - instead of five rounds of chemo, Jade will have two or three rounds of high-dose chemo followed by a bone marrow transplant.  Jade's hospital stays for each round of chemo will span four to five weeks; the bone marrow transplant stay, some sixty days. (In the doctors' estimation, chemotherapy alone will not cure the leukemia; Jade needs a new immune system.) The medicines - the chemotherapy agents that Jade receives this time are even more potent than those she received in 2012. But Jade is the most different. She is a big girl now, who asks questions, expresses missing home, missing family, not wanting to be here... but, her fighter spirit is still as strong as ever.

After fairly harmless visits to the oncology clinic for follow-ups for the past year, the shock and trauma of a central line placement, lumbar puncture, and bone marrow biopsy just a few days ago are real. I thought we were past that too.  The first few days, she trusted no one; everyone seemed to want to poke, peel, prod, or push something. Very few nurses or doctors were able to evade her side eye. She perfected her "if I don't acknowledge you, you're not here" blank stare when most medical staff enter the room. But, this morning, Jade is playful -- and not just with me.  She was dancing during rounds this morning with the doctors, told them about her new sunglasses, and -- if I'm not mistaken -- flirted with one of the male nurses who walked by. For shame, I know.

With how well Jade did during her first hospitalization, we know that prayer works.  There are many things that we need right now -- healing, strength, sanity, stability, togetherness. But now, perhaps more than ever, we need your prayers and positive thoughts to continue for the chemotherapy to put her leukemia into remission and ultimately for the transplant to be her cure.

Thank you for your prayers and your positive thoughts.

Sunday, August 12, 2012

There's No Place Like ... Home!

Jade is happy, healthy, at home, and one step closer to putting this cancer journey behind her.  So excited to have headed home this weekend with our baby girl!  She is scheduled for a biopsy on August 21st, which we pray will show no cancer in her bone marrow.

Now, 'tis time to catch up on some rest!

Thank you for all of your prayers, positive thoughts, and support throughout this journey.

Friday, August 10, 2012

Day 32, Chemo Round 5:: Almost Home!

Jade's ANC more than doubled overnight.  So, we celebrated with Beyonce... Okay, not with Beyonce, but with a pretty mean dance to Love On Top.  (Jade's almost as big of a fan as I am.) We are almost home!  The discharge paperwork has been prepped, the prescriptions have been written, the bags have been packed (in my mind), and we've got three feet out of the door. (One is mine, but I'll be carrying Jade. So, yeah. Three feet.)  :)




Today's Counts
White Blood Cells: 0.65
Hemoglobin: 13.5
Platelets: 56
ANC: 170

Day 31, Chemo Round 5 :: Looking Up!

Who's that lady?
Things are looking up from here!  Jade is making platelets and hemoglobin all on her own (Tuesday's transfusion will be the last for this admission), and her white blood cells and neutrophil count are beginning to recover steadily. The mouth sores and infection are vanishing and her appetite is picking up quite nicely... and after six long days, she pooped.  I'm just about ready to pack our bags.  :)

Thanks for every prayer sent up and positive thought sent our way.

Today's Counts-
White Blood Cells: 0.63
Hemoglobin: 13.3
Platelets: 52
ANC: 80

Tuesday, August 7, 2012

Day 29, Chemo Round 5 :: Hello, ANC!

Soooooo glad to see you, ANC.
Jade's ANC finally came out of hiding today! Never mind that she started a new medicine (nystatin) for a fungal infection in her mouth and had a blood transfusion because her hemoglobin level (oxygen carrying capacity of the blood) dropped too low and her pulse rate was elevated (the body increases the heart rate to move blood -- and the oxygen it's carrying -- faster through the tissue). 

A pint of blood and three hours later, there was no stopping Jade.  Walking, coloring, singing, you name it.  It wasn't until nearly 11pm (gasp) that she declared, "I'm finished," and traded her Color Wonder markers and Tinker Bell coloring book for a splash of milk and momma's kisses.  Good night, sweet baby!

We have our hopes set on a discharge this week, so resolving this mouth situation and an ANC of 250 for at least two days is high on our prayer list. As always, thanks for keeping Jade in your prayers and thoughts.

Today's Counts:
White Blood Cells: 0.36
Hemoglobin: 7.0
Platelets: 21
ANC: 20
Pulse Rate: 140 at rest (Jade's normal rate is 100)

Sunday, August 5, 2012

Day 27, Chemo Round 5 :: C'mon ANC!

Ready for bed.

We've had a couple of restless nights, but it looks like Jade and I will finally get some sound sleep tonight thanks to some  "Magic Mouthwash" - a mixture of maalox, benadryl, and lidocaine that is actually called by that name - and a small dose of oxycodone.  The tiny sore that we spotted on Jade's tongue last week didn't alarm us at first; mouth sores, or mucositis, are a know side effect of chemo, especially the chemotherapy agents that Jade receives.  Jade actually developed one mouth sore late in her previous round of chemo, but it resolved pretty quickly on its own.


The one sore we saw last week, however, is now at least three (apparently these little suckers can pop up in the mouth and throughout the throat; the chemo attacks cancer cells and other rapidly dividing cells.  The cells that line the mouth, throat, stomach, and bowel fall into that "rapidly dividing" category).  They're pretty uncomfortable from what the doctors describe and from what I can gauge from changes to Jade's normally playful demeanor and healthy appetite -- this cranky baby woke up every hour on the hour overnight and only ate a couple of spoons of oatmeal, a few bites of a pancake, and a couple of crackers all day.

Aside from frequent rinsing and smart eating/drinking, there's no real treatment for the sores themselves. The mouthwash and pain medication are to ease the discomfort and make eating and sleeping more possible. The sores typically clear up when the ANC recovers, so... c'mon ANC!

Today's Counts
White Blood Cells: 0.19
Hemoglobin: 7.5
Platelets: 11
ANC: 0

Saturday, August 4, 2012

Day 25, Chemo Round 5 :: A Roller Coaster Ride

Sorry for taking you guys on this roller coaster ride! Believe me, we wish it were all uphill too. Jade's ANC lost the ground that it gained yesterday and is back at zero.  Bahumbug.


Today's Counts
White Blood Cells: 0.2
Hemoglobin: 8.3
Platelets: 22
ANC: 0


And the peach fuzz that was beginning to fill in quite nicely on her little head is also coming out again ... I know it's just hair; it just takes me back to how sobering it was when Jade first lost her hair.  The sinking feeling that came with waking up to pillowcases covered by her tiny curls each day, and no longer being able to talk myself out of the diagnosis, with her bald head a constant reminder of her cancer and the queue for my final acceptance.  But so much has changed since then; we have all grown and learned so much (Jade even identifies her central line by its proper name, "broviac") ... and now, the end of her in-patient treatment plan is almost in sight.  Thank God for that! 


Jade's Bush... Jan 2012
Jade's Fade... Feb 2012
Happy to be...
March 2012
Shiny
April 2012
Bye-bye, eyebrows and lashes.
May 2012
Where'd they go?
June 2012
Welcome back, brows.
July 2012

Enough to brush?
August 2012

Thursday, August 2, 2012

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