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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5 responses to “A mystery —–

  1. Continuing in prayer for all of you!

  2. Happy and a blessed Easter holiday to all the Love Family! You haven’t written for a while so I am assuming all is well with Emily. I hope this is a restful season for all of you.

    I am wanting to write an article about childhood cancer. Of course, I think of Emily and all of you and another blog I follow, healing maya.

    I would like to give some facts but this is more about what a family goes through in caregiving a child. Is there anything any one in your family that might want to share with me and I can quote on my blog? Please think about this and if any one, from Auntie Plum to Grammie or even the siblings, please contact me:
    advocateofhope@gmail.com
    always my best!
    Cyndi
    http://advocateofhope.wordpress.com

    • Thanks, Cyndi – I was thinking about you the other day and wondering how you’re doing. Emily has been doing well, which is good! I’m going to try to put a post up in a few days. Have been thinking about it and you have spurred me on! What is it that you’re looking for for your blog?
      Genie/Grammie

      • I will write a paragraph or two on the facts of childhood cancer. What I am looking for from you or anyone in the family is the personal side; what family members experience emotionally, mentally, physically, and spiritually. You could write on the whole aspect or chose one aspect. I want other families dealing with childhood crisis that they are not alone and what they are going through is “normal”, a word which we really don’t like when facing a trial. Sometimes I think cancer patient/survivors and/or caregivers think they are going crazy dealing with the wide swing of emotions and then throw our Christianity on top of that KNOWING our faith in Christ should be enough but we fall WAY short and wonder if we are failing in our faith . . . I know this because I felt this.
        I hope this is helpful. Just remember, whoever participates is benefitting those involved with childhood cancer.
        Cyndi

      • That is so funny, Cyndi! I have a torn-out page of a notepad lying in front of me with notes for a new blog post and my maybe-going-to-use-this title was “Normal!” So, if I do end up using that title, please know that I had already thought of it! Not that I think you would mind, anyway, but just thought it was neat that our minds were both going in the same way. I will make sure to let Chrissie know about your request. She would have, of course, the inside lead on how life changes and how you deal with it. But, like you said, all of our lives have changed, too. I will send you a quick email. —- Ok, just sent one – if you don’t get it, let me know. Have a good Easter and know that I pray for you. Genie/Grammie

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