Monday, March 28, 2011

Vacation Post Break...for a Cami Update!

I know this is a little late, but I want to post it so I can keep track.  The day after we got home from our trip, Cami had clinic.  We had to get in there ASAP because she is supposed to get chemo every 4 weeks.  That 4th week fell right while we were in Florida, so they pushed her chemo to week 5.  Other than a little sun rash she got on her face, everything looked great! 

Clinic stats 3/10/11:
Height: 108


Weight: 18.4kg (40.5 lbs.)

ANC: 3,100
WBC: 3.6
Hematocrit: 32.3%
Platelets: 205




That was a few weeks ago, now on to the present...

Little Cami has had a pretty rough weekend.  Thursday was Pats birthday (Happy Birthday Pat!) so we went out with some friends to celebrate.

  
 When we got home, Cami had a temperature of 99.8.  I knew what was coming so I started checking her temperature every 30 minutes.  Sure enough a couple hours later her fever had spiked to 102.8.  So at 1AM we packed up and headed to the (dreaded) ER.  They rushed us back, accessed her port, took a blood sample, started fluids and rocephin (an antibiotic), and made sure to collect our $200 co-pay (eeek!).  This is the standard drill with EVERY fever she gets.  Lucky for us her blood levels came back high enough so after 4 hours in the ER they let us come home, where we'd be allowed to give her tylenol for 24 hours.  If her ANC (ability to fight infection) would have been too low, they would have admitted her. 
   
3/25/11 CBC results:
WBC: 4.1
HCT: 32.2%
PLTS: 239
ANC: 3,400


Here she is getting her fluids and antibiotic.

We got home that night at 5AM and after catching up on sleep all of Friday and Saturday she seemed to be feeling better (except for a cough).  Saturday when we thought she was playing in the playroom, we found her just laying there with all her stuffed animals.  We started to realize she still wasn't feeling so hot, but we were able to keep her comfortable for the next 24 hours with some tylenol.

 Sure enough, as that Tylenol wore off that fever was back!  
So... Saturday night it was back to the ER for us.  This time they did more tests to try and figure out exactly why she was getting a fever.  They did the "cancer-kid fever protocol" CBC, IV fluids and rocephin (antibiotic).  They also did a chest X-ray, and a VRP (nose swab to test for virus).  

Cami has become a pro at playing Doctor.  She took care of sick Froggy all night.  

Although her levels had dropped by almost half (her ANC was 1,300), they were still high enough to let us go home...YAY!

The last 2 days her fever has stayed away (thank heavens).  Today clinic called and told me that her nose swab came back positive for metapneumovirus.  It is basically the common cold, but it is closely related to RSV and can easily turn into pneumonia especially in immunocompromised kids.  They want us to watch her temperature as a spike can mean pneumonia.  

So far, her temperature is only going down and her cough is sounding better.  Im hopeful that she will be back to normal soon.  It is just another reminder how fragile she is.  It is amazing how something as insignificant as a cold can cause so much distress and panic, but then again there is no such thing as insignificant when it comes to cancer.  

9 comments:

  1. metapneumovirus is what elena got hospitalized for at the end of january/beginning of february! she ended up with pneumonia from it. we were inpatient for about a week with that one. she also had pan sinusitis on top of it (a really bad total sinus infection.) it was just a nasty one, but we had all been sick for a while - that was the visit where she almost got sent to the PICU. i hope, hope, hope that cami's little body stays strong and can fight it off! isn't it crazy what "a cold" can do to these kids?? it gets me every time. we will keep cami in our prayers. keep us updated on how she's doing.

    and that picture of when you found cami laying with her stuffed animals totally got me. we've found elena like that too when she's been sick - just laying there. it breaks my heart! poor little things! lots of love to you guys!

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  2. I have so many thoughts. First, her hair is SO BEAUTIFUL! It is growing in so nicely. I wonder if it will be curly or wavy. Secondly, I am sorry that she had a virus, these kids are so fragile even though they might look healthy and smilely. That nose swab is the pits, I hope she tolerated it well. Third, I hope the antibiotics help keep her fevers and the virus away. Lastly, I think it's pretty amazing her ANC was so high - is it usually in the 3000's? Thanks for updating us, we love little Cami.

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  3. I am SO GLAD this didnt happen till AFTER your trip! (Id prefer it didnt happen at all, but you know...) I have LOVED LOVED LOVED reading all your posts about your trip.
    We are going in May (not with Make a Wish), and I am getting so excited reading about all the fun stuff we'll get to see and do! I was in tears reading about Camis "best day ever". She is seriously so cute and I am so glad she could have such a wonderful trip. These little ones have earned it...and so have their families!
    Glad shes feeling better...I am SO ready for spring!!

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  4. Thanks guys!
    Briana- I'm so sorry you guys are inpatient. I'm praying this won't turn into pneumonia for Cam... Your story sounds scary!
    Jill- Cami metabolizes chemotherapy well (too well)! That is why her counts are usually high. They don't want them to be as high as they have been. It seems like it would be a good thing, but it's not... The grass is always greener I guess.
    Lea- I'm SO excited for you guys!, I can't wait to see pics!

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  5. It's Joy from Joy Belle on Etsy and I just wanted to say I've been bawling while reading through your blog. Cami is SO incredibly gorgeous!

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  6. Im sorry Cami hasnt been feeling well :( I hope she can get over this nasty thing quickly. She is so gorgeous and I LOVE LOVE LOVE that hair!! I pray NO MORE er visits for you guys. Love ya and tell Cami hi from me and Skyler

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  7. So sorry she's been sick. I hope she kicks it to the curb. Her hair looks fabulous. Looks like you guys had a great trip. It is so nice to recharge the batteries. For everyone in the family. The only problem is that you want to keep charging them forever! I swear they need back to reality counseling after all that amazing-ness. Hope you're all doing well!

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  8. We are in Ireland but finally found a few minutes to catch up on blogs at 1 a.m.(except it's only 6 p.m. there. Lenna told me about this and I'm so sorry! Just what you don't need. But it sounds as though things are under control and that you have survived yet another storm! You guys are amazing!

    My new favorite quote goes something like this: "We are all either just leaving a crisis, in the middle of a crisis or just entering a new crisis...and that's because God cares more about our character than our comfort!"

    You guys have sure learned a lot about character in the past ten months and it shines through your words and your faces. You are awesome!

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