Monthly Archives: February 2013

A mystery —–

When Emily arrived in her room on the Peds floor, she was met with a new quilt, a pink pillowcase, a rainbow bear, and a Barbie - all put there for her by her nurses, to welcome her to her room!

When Emily arrived in her room on the Peds floor, she was met with a new quilt, a pink pillowcase, a rainbow bear, and a Barbie – all put there for her by her nurses, to welcome her to her room!

Emily has had another hospital admission – and discharge – and this one had everyone scratching their heads.  Last week, she threw up on Wednesday night  – and everyone figured it was just the stomach bug that her sister, Sophie, had had the weekend before.  However, Sophie threw up four times in one night and then was done, but Emily kept dragging it out.  She had her monthly spinal tap with intrathecal chemo (chemo into the spinal fluid) on Friday morning – then threw up several times that night.  She gets this type of chemo often and has not had a problem with it in the past so Chrissie still was thinking it was a stomach virus.  By Saturday, Emily was getting more clingy and fatigued.  She wanted to be held all the time and even asked Chrissie to put her to bed at night.  Totally not normal Emily. Not normal for any two-and-a-half-year old. On Sunday, Emily was pretty close to lethargic – when Chrissie would put her down to do something with her other kids, Emily would just lean over wherever she had been put down and stay in that position until Chrissie came back.

Combing her Barbie's hair.  Notice how much hair Emily now has!

Combing her Barbie’s hair. Notice how much hair Emily now has!

Chrissie called the Oncologist  and was told to bring Emily to the ER at U.C. Davis.  The doctor had ordered a head CT scan, thinking Emily might be experiencing a chemo toxicity, which can cause a form of encephalitis.  By the time they got to the ER, Emily had perked up and was talking and playing – kind of like she did the night we brought her in last February, when she was first diagnosed with leukemia!  Emily just has to always be different!  Once the doctor saw her in person and her labs came back showing a low glucose of 53 and low electrolytes, indicating slight dehydration, the CT scan was canceled and they admitted Emily overnight to watch.  They boosted her with IV fluids and IV dextrose (sugar) and figured she’d probably go home the next day.

Of course, Emily never does anything easily.  She threw up a few times again on Monday and again Monday night and Tuesday morning.  The strange thing was that she never had a temp and she’d go hours in between throwing up – and during the in-between times, she’d be laughing and feisty and playful.  On Monday, her nurse, Nicole, made a fort for her by pulling the trash and linen containers out from under the shelf in the room, completely sanitizing the area, laying a blanket on the floor, then taping a sheet on the shelf above the opening so that it hung down and made a door!  High fives for the Peds nurses at U.C. Davis!!!  Emily and Auntie Gaby hid inside the fort when I/Grammie got there after work on Monday – I “hunted” all over the room for them – and every time I would call out for Emily I’d hear “I’m in here” (in a little voice), then giggles! – and finally I got totally “scared” by two surprises when I opened the door to the fort! I cannot tell you what the poor food cart lady was thinking when she came into the room to deliver the nightly food tray and she had people talking to her from behind a sheet!

One of Emily's happier times, when she was able to eat her now-favorite food, Ruffles potato chips!

One of Emily’s happier times, when she was able to eat her now-favorite food,
Ruffles potato chips!

On Tuesday, one of Emily’s blood cultures came back positive for strep.  None of the doctors thought she actually had a strep infection because she just didn’t act like it but, just in case, they drew a second set of cultures and started her on a 24-hour antibiotic.  The other odd thing was that her ANC was 6900, really high.  She has been as low as zero – and 500 is considered her minimum for being able to fight off infection.  The whole thing was just a puzzle – no easy answers – but she still was doing this business of throwing up intermittently, not wanting to eat much or drink, and then being fine in-between.

Emily and Momma --

Emily and Momma —

Finally, on Wednesday, she had gone almost a day without throwing up and was drinking more.  The second cultures came back negative for strep and she informed Dr. Ducore, her Oncologist, that she could leave because she was going to put on her shoes!  Then, after he left, she told Chrissie, “He’s my favorite!”  So they released her – and Chrissie – with a diagnosis of probable gastritis, a stomach inflammation, and dehydration.  On the way home, Emily informed Chrissie that “my boys and Sissie want Taco Bell” – and so Chrissie went to Taco Bell and got some for Emily, as well as her boys and Sissie!

Emily is now home and Chrissie and Jason got to snuggle with all of their kids last night.  We may never know for sure what happened with Emily but we do know that, as her nurse once said, we just have to have a low threshhold of concern for Emily – when she starts to show symptoms, she is usually sicker than other kids would be with the same symptoms.  We also know that the support system for Emily and her family is still strong.  Thank you to everyone who organized and provided child care and rides for her brothers and sister and who brought meals and company to Emily and Chrissie in the hospital.  And, for now, this is the end of this mystery — !

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Happy Valentine’s Day!

Happy Valentines Day!

Valentine’s Day in Davis 7

Just like last year, our Valentine’s Day was spent in the hospital, but this time only as visitors. Sophia, Emily, and I visited the Davis 7 Playroom this morning to participate in some fun valentine activities with the Children’s Miracle Network (which was extra exciting for both girls, since we’re never allowed in there when Em is admitted!).
Emily is doing really, really well. Her ANC/immune system has been a bit low the past two weeks, so some of her treatments have been put on hold until it rises, but you couldn’t tell unless you knew! She is spunky, active, rambunctious, and full of life … basically, she’s back to her normal self!
Her hair is coming back in thick, wavy, and fast! And she’s totally loving the Mohawk, asking for it every day. We even sprayed on some pink, and she’s already planning on wearing it to church next week. That’s our Stitch!

One Whole Year!

When people find out that Emily has leukemia, the first question is almost always, “How did you know?”. To answer that here, I wrote, in detail, about the events leading up to her diagnosis, and I posted it on a new page, which you can go to by clicking this link.

https://emilyannelove.wordpress.com/how-it-began/

Two days from now will be one year from the time Emily was diagnosed with ALL, so it’s probably not surprising that I’ve spent a lot of my recent time reflecting on the past year. Today especially has been a somewhat emotional day, because we attended our annual Co-op Valentine’s Day Party this morning, and it was right after this party last year that we took Emily to the ER at UCD. On the way to the party, I wondered how I would feel once there, and in fact, I started tearing up a bit as we passed the fast food restaurant we ate lunch at after the party last year. Yet once we arrived at the roller skating rink, I realized how –even though I now know Emily has cancer –today I feel less worried and anxious than I did last year when I had no answers as to what was going on with her.
At this time last year Emily was simply not herself, my instincts told me something was very wrong, and I was very, very worried. During the party I couldn’t hold back tears while discussing it with some of my friends, and I was on pins and needles waiting for the late afternoon when I planned to take her to the Doctor -again. Yet even though her diagnosis was devastating, it was so much worse not knowing what was wrong.
Today was a different day. Last year Emily couldn’t make it around the rink one time. This year she happily skated all the way around (it took ten minutes to go around one time!) and cried when I had to turn her skates back in. Last year she fell asleep in her aunt’s arms. This year she played and danced and laughed for two whole hours, then ran around in the parking lot with her siblings and cousins afterward. Last year she was as pale as a ghost and covered in bruise. This year her cheeks were flushed and the only bruises she has are the ones she earned by cheerfully, rambunctiously playing this past month. Last year she wouldn’t eat anything. This year she scarfed down a whole bag of popcorn, a cookie, half a bottle of water, and then came home and ate her entire lunch.
Today was a good day. Almost healing, in a way, because I was able to see a healthy(ish) little girl doing what she was supposed to do. And even though I know what she’s been through and what she still has to face, I have peace. Last year God was nudging me to keep seeking answers; this year I feel the peace that surpasses all understanding, knowing that God has always had the answers.
When we got home today, Emily was in such good spirits I had to snap a few pictures. Here are her and her siblings today 

DSCN1209 DSCN1213

Please praise God with me that Emily’s IGg transfusions seem to be working! Her brothers and sister all came down with an illness last week, but Emily stayed healthy!