Monthly Archives: May 2013

A few weeks ago I asked for prayers for a young friend of ours, Amanda. It is with immense sadness that I am now asking you to pray for her family, as Amanda passed away Saturday night. Though Amanda was only 16 years old, her faith in Jesus was strong, and we have assurance that she is now in heaven with Him and is no longer in pain. But, while Amanda is now in comfort, her family is left here with broken hearts and indescribable grief. She has left behind her mother and father and one younger brother, as well as many extended family and friends. They will all need prayers as they experience the grief of her loss and struggle with the anger and confusion that will surely come.
Emily and I were blessed to know her for a short time, and she and her family will forever be dear to me. This journey we’re on is a bumpy one, with too many unexpected twists and turns. We live in a broken world full of sin and disease and death, and yes our God has victory over this, but here on earth it just really, really sucks sometimes.
Amanda began her cancer journey in January 2012, just one month before Emily, so by the time Emily made her first visit to the Cancer Center Infusion Room for outpatient chemo in March, Amanda and her family were already pros there. Emily and I showed up completely unprepared, not knowing how long we would be there or whether or not we could bring food, etc. And Emily had been on steroids for 5 weeks, so she was cranky and hungry all the time. To my embarrassment, as soon as we checked in, Emily began literally screaming for pizza. All the patients are in one large room together, so there was no hiding, and Emily made it loudly clear that she was not happy and she wanted pizza. About an hour into our visit, and Emily still screaming, a father came into the room and stopped at the bed of his beautiful young girl. He stayed just a little while, then left. A few minutes later, he came back and spoke to the nurses. Then one of the nurses came to me with a box in her hands. The father, Amanda’s dad, had heard Emily’s screams, understood the situation completely, and gone to Subway down the street to purchase her a mini pizza. I was so embarrassed and touched by the gesture that I didn’t even say thank you.
The Pinney Family is a special one. I hate that they had to travel this awful journey only to lose their little girl. Please keep them in your prayers.
Thank you.
The Lord is close to the brokenhearted and saves those who are crushed in spirit.
~ Psalm 34:18

Amanda Pinney

Amanda Pinney

To all of Emily’s supporters —

We received an email this week from Emily’s Auntie Jennifer, telling us that her friend, Lynda, will be running the San Diego Rock N Roll Half Marathon on June 2nd, in honor of Emily. Jennifer and Lynda met last year when they were both training with Team in Training for the October Nike Womens Half Marathon and raising money for the Leukemia Lymphoma Society. Jennifer sent a link to Lynda’s fundraising page and we learned that Lynda is not only going to do the marathon in June, she already ran the San Luis Obispo Full Marathon in April. Both marathons are/were in honor of Emily, as well as her sister-in-law, who has breast cancer, and for both, Lynda has been raising money for the Leukemia Lymphoma Society. Here is Lynda’s fundraising page, if you would like to read more – http://pages.teamintraining.org/cca/rnr13/LyndaLane.

We are not asking for donations with this post, as Lynda is already fully funded, but we wanted to say “Thank You,” a thousand times over, to Lynda for all of the hours she has spent on training, all of the mornings she has had to roll out of bed early, all of the times she has had to ask others for money and for the big heart that she must have in order to do this in honor of our little girl. Finding out about Lynda – someone most of us in Emily’s extended family have not met – brings to mind all of the other people who are praying for and supporting Emily and her family in so many ways. Some we know and some we don’t but Every Single One Of You is important to us and matters to us. You are our safety net – you are our security blanket – you are our family. THANK YOU —–

Tigger went thud —

Emily, at Adam's Little League game, sporting her new cast, signed by all of the nurses at the Cancer Center this morning!

Emily, at Adam’s Little League game, sporting her new cast, signed by all of the nurses at the Cancer Center this morning!

Emily has been feeling really good of late – you would never guess, most of the time, that she’s on daily chemo.  She’s been a mini-Tigger on springs, bouncing and climbing and jumping – and it’s been awesome to watch her.  Unfortunately, Tigger sprung too much yesterday and she now has a cast on her leg.

As Chrissie and Emily were leaving the Infusion Room at the U.C. Davis Cancer Center yesterday, after an antibiotic infusion in preparation for her spinal tap today, Emily was jumping up-and-down on some foot-high, decorative concrete blocks that were outside.  Chrissie was holding her hand so that Emily wasn’t putting her full weight on her legs when she jumped but when Emily jumped down onto the grass at the last block, she crumpled to the ground, crying.  At first, Chrissie figured she’d probably just sprained her ankle, because who immediately thinks that their kid just broke their leg(?!), and so she took her home, iced it, and put her down for her nap; however, when Emily woke up, she wouldn’t put any weight on her leg.  There was no swelling or bruising and Emily wasn’t crying but Chrissie was concerned and so we – Chrissie and Grammie – took her to an Urgent Care. The doctor there advised us to take  Emily to the U.C. Davis ER since it had a childrens’ hospital (the Urgent Care wasn’t affiliated with one) and Emily was already being treated there for leukemia.  Unfortunately, we ended up there on one of their busiest nights.

Emily, on her way to the hospital, and enjoying the ride.  She kept saying she was glad to be going to "her hospital" and to see "my doctors."

Emily, on her way to the hospital, and enjoying the ride. She kept saying she was glad to be going to “my hospital” and to see “my doctors.”

Waiting in the Peds Waiting Room.  Emily went from giggling, silly punch-drunk from lack of sleep to intermittently lying down.

Waiting in the Peds Waiting Room. Emily went from giggling, silly punch-drunk from lack of sleep to intermittently lying down.

We got to U.C. Davis about 8:00 pm – and waited in their Pediatrics Waiting room for five hours(!), before finally being ushered into the Peds ER at 1:00 am.  We were in the waiting room long enough for our group to bond with another family who had brought in their two-year-old, who had also fallen – and we were sharing snacks and cell phone videos and I figured pretty soon we’d be inviting each other over for dinners at home!  All the while, Emily was really guarding her left lower leg – not crying but not moving it either.

We're now in the Pediatrics ER room and Emily is still clowning around and silly!  She has the most awesome spirit ---

We’re now in the Pediatrics ER room and Emily is still clowning around and silly! She has the most awesome spirit —

After we got into the ER room and Emily’s leg was checked, they gave her a dose of Tylenol so that they’d be able to straighten her leg for an xray.  Pretty soon, between the Tylenol and the general lack of sleep, she slept through the rest of the ER visit.  Too bad Momma and Grammie couldn’t do the same. Turned out she has a Buckle Fracture of the fibula and tibia – which is a version of a greenstick fracture, which is fairly common in kids.  Their bones are soft so when they break, they break more like a green stick, which bends and doesn’t break all the way through, rather than a dry stick (like an adult’s bone), which snaps all the way across.  Her tibia sort of splintered while her fibula did more of a buckle, where it bent several ways.  Her Oncologist told Chrissie this morning that it most likely occurred because Emily’s bones are weaker due to all of the chemo and steroids.

This speaks for itself ---

This speaks for itself —

Emily slept through the whole casting process.

Emily slept through the whole casting process–

 --- and she continued to sleep afterwards.

— and she continued to sleep afterwards.

Chrissie and I walked out of the ER after 4 am and arrived at Chrissie’s house just before 5 am. Emily slept the whole way home and then nursed and went to bed.  Chrissie got an hour-and-a-half of sleep before getting up, driving her kids to her sister-in-law’s, and then taking Emily back to the Med Center for her already-scheduled spinal tap and chemo infusion.  After picking up her kids this afternoon, she managed another hour-and-a-half of sleep, then picked up Jason from his car pool, they all took Ethan to batting practice, then everyone went to Adam’s Little League game.  Hopefully, they will all get some sleep tonight.

Going home ---

Going home —

Emily is handling it well, so far.  She held court at Adam’s Little League game with her leg spread out straight while playing a game with the other kids.  Chrissie will keep any pain covered for now with some prescribed pain medication but the cast itself will take away most of the pain.  The Ortho doctor who put on the cast said that kids’ bones heal really quickly and that the fibula will straighten out as it heals.  Emily will have the cast for a few weeks and will be followed by the Pediatric Fracture Clinic at U.C. Davis.  Enough cannot be said for the care and the caring that U.C. Davis has given to Emily and for the Childrens’ Miracle Network which is supporting the Cancer Center and allowing Emily’s treatments and care to be financially covered.  Please support them anytime you get the chance.  Also, of course, continue to pray for this family —

She is THREE – and she is Fierce!

"And though she be but little -- she is fierce."   William Shakespeare

“And though she be but little — she is fierce.”
William Shakespeare

God’s little miracle, Emily, turned three this past Wednesday, on May 1st – and this time, she didn’t spend her birthday in the hospital! She spent most of the day at a Children’s Miracle Network function, charming executives and managers from Costco while Chrissie spoke. Chrissie said that Emily spent the whole time while she was talking, twirling around Chrissie’s legs and singing! That would be Emily!

Sophie helped decorate with streamers!

Sophie helped decorate with streamers!

photo-33

Her three-year birthday party was held the Sunday prior to her birthday. She had two sets of grandparents, several aunts and uncles, along with cousins and friends, all there to not only honor her third birthday but to rejoice in the fact that she had made it through a year of chemo and surgeries and multiple hospital stays. Her brand new, wavy hair is getting longer and she is starting to get some of her little girl plumpness back. She plays and goes about life head first – then puts her arms up for someone to pick her up so she can snuggle – then gets down and starts again! How can you not love that fierce, little spirit —

The kids temporarily disappeared and we found several of them sitting on Sophie's bed, talking and giggling!

The kids temporarily disappeared and we found several of them sitting on Sophie’s bed, talking and giggling!

One of the games involved tossing gum drops into cups and when Emily's best friend, Kayla, missed the cup, Emily immediately walked over and put it in for her!

One of the games involved tossing gum drops into cups and when Emily’s best friend, Kayla, missed the cup, Emily immediately walked over and put it in for her!

Medically, her ANC count had dropped recently so she was off of chemo two weeks ago, to allow her system to build up again. Since that was the second time her ANC count had dropped, the doctors restarted her at 50% of her normal chemo dose for a week – increasing to a 75% dose this coming week. It’s a continuing balancing act to keep her ANC high enough that her body can fight infection yet low enough that her body won’t fight the chemo. All we can say is praise God for the doctors who have the knowledge to help this little girl walk this tightrope of treatments.

100MEDIA36IMAG1588

You can't say Emily doesn't enjoy a card!

You can’t say Emily doesn’t enjoy a card!

photo-41

In the meantime, Emily holds court wherever she is. We were at one of her brother’s Little League games this week and Emily, while sitting on a blanket and playing with her new Minnie Mouse doll, was talking and singing at the top of her lungs – as was said in an earlier post, where IS that mute button?! – and pretty soon, she had six other kids all sitting around her, watching her show! She did the same thing at another brother’s Little League game this afternoon.

She was given a doll who is bald, like she used to be --

She was given a doll who is bald, like she used to be —

She’s still little and you can look at her and tell that she doesn’t have the size or steadiness of a non-sick three-year-old but she lives LOUD and she is Fierce – and she captures the heart of everyone who comes to know her. Thank you, Jesus, for another year with this miracle of Emily.