The Saga of Chicken Pox with Leukemia

So Serenity ended up spending 24 hours in the hospital, now she is home on IV meds. Here’s the interesting thing, we’re basically being her primary care providers – that’s how much training and experience we’ve gained in medicine this year.
Chicken Pox is a potentially deadly combination with Leukemia, but only if there is […]

So Serenity ended up spending 24 hours in the hospital, now she is home on IV meds. Here’s the interesting thing, we’re basically being her primary care providers – that’s how much training and experience we’ve gained in medicine this year.

Chicken Pox is a potentially deadly combination with Leukemia, but only if there is a severe reaction. So the Oncologist had her check in to the ICS ward at Primary Children’s Hospital so they could observe her reaction. 24 hours later she still wasn’t running a fever and was doing quite well, except for the sheer boredom! She has pox all over her body but it’s a mild case, the biggst concern is if they get in her mouth and respiratory tract. We are monitoring her temperature and her breakout, if they accelerate she’ll be back in the hospital, otherwise she’ll work through them here.

She is on a broad spectrum antibiotic (Acyclovir), taking 70 mls every 8 hours. She takes them through an IV pump which feeds into her port. This means we are performing nurse duties of managing sterile environments to hookup her IV to her port, monitoring the drip, etc.

I know there is a lot more to medicine than this, but sometimes it feels like we just need 10 more credits to be a full blown nurse. )

Here’s a few pictures from this hospital visit:

The whole family hanging out

 

She’s pretty sure that she’s at her cutest with her tongue sticking out!

See what I mean? ) She’s holding her horse, he’s her ‘proxy patient’ – he gets most of her procedures done to him before she does. Her other animal is her monkey because my nickname for her is “Monkey Butt” – I have no idea why!

 

 

#serenleuk

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Chickenpox! Serenity heading back to the Hospital

 I swore I would be better about blogging Serenity’s hospital/leukemia journey than I have been lately – unfortunately, now is my chance to make good on that.
 Serenity (my youngest daughter who has leukemia) has just been diagnosed with Chickenpox, one of the more dangerous things that could happen for her right now.  Adria is currently taking […]

 I swore I would be better about blogging Serenity’s hospital/leukemia journey than I have been lately – unfortunately, now is my chance to make good on that.

 Serenity (my youngest daughter who has leukemia) has just been diagnosed with Chickenpox, one of the more dangerous things that could happen for her right now.  Adria is currently taking her to Primary Childrens Hospital to be admitted where they’ll pump her full of antibiotics again and try to fight off the infection.  Adria says she (Serenity) is MAD and is chanting “I DON’T WANT DINNER IN THE HOSPITAL!”.  She is tired of being stuck in a hospital bed and the worst part is, because she has chickenpox she will be isolated in her room and not allowed out to play. 

 And of course, we’re as sick as she is of being stuck there.  No idea how long this one will last, I’ll post updates as we get them.

#SerenLeuk

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Long term maintenance

We are in the final phase of treatment for ALL and it is so hard for me to believe. Maintenance lasts approximately 2 years and she will be getting daily chemotherapy for all of that time. But here we are at the point that I could not even imagine 6 months ago.

Last week Serenity had another lumbar puncture where she went under anesthesia and had methotrexate injected into her spinal column. She did well and woke up quickly. At the time her ANC and platelets were high, and her hematocrit was bordering on low but not quite low enough to transfuse. (I think it was in the low 30’s, if I remember correctly.) The doctor said that with the drugs she is on they usually don’t see the kids’ numbers crash like they do during Delayed Intensification. However, Serenity will need a CBC in another week so that we know whether her hematocrit has dropped, and if so she will have another transfusion.

If things go well we only have to go to the clinic once a month now! This is wonderful because for the most part we have been going once a week (or more) and a clinic visit is an all day excursion.

She is taking 6MP again every day, dexamethasone (steroid) for 5 days out of the month, and gets oral methotrexate once a week except for during the week that she will get it in her spine. This cycle repeats over and over throughout maintenance.

Serenity is doing well. She is walking again, albeit slowly and carefully. She has stopped throwing up and only needs Zofran on some days. Her eyelashes and eyebrows are just starting to grow back in. She has lost some weight, but not too much. She hasn’t complained about any pain for several days now. She has been running a low fever today, so we are just praying we don’t end up in the hospital over the holidays.

I am nervous about taking her out all day tomorrow and having her around a lot of family members. I know that I don’t have to worry most likely. Her ANC was very good (for a cancer kid) when she had her blood draw last week. But the last time we did a big thing with extended family she ended up in the hospital that night and we stayed for over a week. So yes, I am a little anxious.

7 things

Serenity has been tagged by Mollie. Here are 7 things that you might not know about her.

1. My parents always intended to name me Zion. When my mom went into labor and she & my dad still disagreed about whether to spell it with an X or a Z, they started looking at other names. If I’d been born on July 4th I would have been named Liberty. Instead I was born on July 6th and they chose Serenity Margaret. Margaret was my great grandmother’s name and my grandmother’s middle name. I’ve lived up to the name Serenity. 🙂

2. I was born at home in the water, and weighed 9 lbs 11 oz.

3. I have 4 older sisters and 3 older brothers. My 3 yr old brother and sister (twins) refer to me as Baby.

4. My parents give me a few sips of Pepsi or Mountain Dew after I take my medicine. My mom feels a little guilty, but it’s the only thing that convinced me to cooperate with taking my medicine, and what’s a little caffeinated soda when you take chemotherapy every day?

5. My favorite candy is peanut butter M&Ms.

6. I have a cute little birthmark on my elbow.

7. I often put a blanket over my head and tell everyone I’m gone. I get a big kick out of watching them look for me. I also love to pretend that I’m a bear.

I’m tagging anyone who is reading this, but especially Brinley.