Well call me a liar!

We get to go home tomorrow!

Charlotte has been looking really well.  No more positive e.coli results since Saturday morning.  Her kidney scans were normal.  The doctor said to me today, "we might be able to drop her antibiotics down to once daily (currently three times a day).  If we do, you could go home and just come in once a day to get her antibiotics until Tuesday.'  Um.....YES PLEASE!

The other great news is her face has completely cleared up so we were taken off isolation.  That means we got to enjoy the playroom today, and should be able to partake in some Halloween activities tomorrow before we go home.

We have our follow up with the neurologist regarding Charlotte's MRI at 11, and then should be able to home after that.  Then we need to go back daily to get her dose of antibiotics. 

Looking forward to our family being together at home!  Happy Halloween everyone!

Just a little thing called E. Coli

For those in our facebook world - you are aware that Charlotte is currently in the hospital being treated for E.Coli.  Here is the story so far:

Last week, there was a case of hand, foot and mouth disease at Charlotte's daycare on Monday.  I kept both kids home Tuesday.  Unfortunately, Charlotte developed a rash by her mouth on Wednesday.  She hadn't had a fever, which usually happens before a rash develops with hand, foot and mouth, but we guessed that's what it was.  On Saturday morning, Charlotte woke up at 4:30 with upset tummy.  This is not that unusual for Charlotte.  This usually happens at least once a month and we attribute it to her chemo or anxiety.  No fever, so gave her some anti nausea medicine and tucked her back in.  at 6:30 she woke again with stomach pain.  Only slight fever (37.2).  She was in obvious pain, so I called the oncologist on call.  By the time the oncologist called back, she had hit 38, we were for sure going in to ER.

We arrived at ER and they checked her blood counts and took blood to test for cultures as per usual procedure for an oncology kid.  They gave her antibiotics, and took what urine sample I could get (not much) and swabbed her mouth.  While it didn't look like hand, foot and mouth (since no inside mouth sores, they were thinking a few other things), because of the other case, they agreed it might be, and possibly also a staph infection.  Then we were sent home to come back the next morning for another dose of antibiotics.

We headed home and her fever spiked again at 7pm.  A dose of tylenol (allowed now once she has been seen by dr. and antibiotics given) didn't bring the fever down.  A call to the oncologist and we were told we could also give advil in this case, which did the trick.  We were all in bed when we get a call at 10:30pm from the oncologist saying her cultures came back positive for E. Coli.  We were to come back in to start a different anti-biotic as what she had been given isn't effective for E. Coli.

We didn't get a lot of info after that, but this is what I've pieced together:

• The E. Coli was most likely NOT from food since she didn't have any diarrhea or vomiting
• She had some blood in her urine (not visible, but appeared on test strip).  She didn't have any pain peeing - but this still likely means she has a Urinary Tract Infection (UTI).
• The E. Coli probably came from the UTI.
• She also has a pretty sore bum, could be from the hand, foot and mouth, or just potty training in general.  (while initial Dr. thought this could have been the source of the E. Coli - most likely it was the UTI.
• Hard to say how she got the UTI.  She tends to hold her pee till the last possible moment.  I don't think this is uncommon with 4 year olds - they don't want to stop playing to go to the potty.  I always wipe her bum after the potty, but I don't think she is as co-operative with others.  In general, some kids are just more susceptible to UTI's.
• We were told she would be in hospital for 10 days from her first negative test for e.coli
• Her blood culture that was taken Saturday night hasn't come back with any positive's as of yet - so we are hopeful it has been nicked already!  This was kind of weird for me as the blood culture was taken before she started the new antibiotic, so not sure if first dose worked, or her own body fought it off.
• Luckily, her counts were all high, like that of a 'normal' kids - which led to other questions (like is she getting the right doses of chemo)
• Also kind of lucky that we have an oncology kid.  I'm guessing if this was a 'normal' kid, this may have not been caught for a few more days.
• She will have a kidney/bladder scan some time during our stay.
• Her hand, foot and mouth rash is already looking better.  Because of the hand, foot and mouth, she hasn't been able to leave her room.  Hoping it clears up soon so she can go to the playroom, and participate in Halloween.
• She didn't eat Saturday/Sunday, but managed some of her favorites, hot cereal and rice today.  She has been drinking and peeing normally.
• She is still taking her chemo, and started her steroids today.
• She has happily discovered xbox and that is her new favorite past time in the hospital.
• Overall, she has been in pretty good spirits.  She told me today "I'm not sick anymore, I can go home now".  It may be a long 10 days!

Now, I'm sure you probably have even more questions after reading this.  I don't have the answers.  I had held off blogging until we had more results, but couldn't hold off anymore.  Stefan and I are taking turns being with her at the hospital.  I'll have a shortened work day tomorrow and then head straight to the hospital.  Nathan has been his usual happy easy going self, and luckily has remained clear of any hand, foot and mouth.

We thank everyone for the amazing support we have received, yet again.  You are all amazing!

Relief

Stefan's MRI was stable.  It's like getting another 6 month get out of jail free card.

"If the only prayer you said in your life was "thank you", that would suffice." - Meister Eckhart

My baby boy turns 2

I can't believe it.  My baby is 2!  Where does time go?  Okay - he's two tomorrow, but we celebrated today with family and chocolate cake.  He was a very happy boy - and surprisingly seemed to know exactly what to do with both presents and cake.  I haven't loaded birthday pics yet, but here is one of him from last week at mini rugby!

Other news:
Charlotte is back in the bubble.  She had her treatment on Monday (we thankfully made it on time despite a flat tire thanks to Super Daddy) and we got the bad news of her being neutropenic (aka. bubble, ANC was 0.03 for those in the know).  So she has been home from daycare all week hanging out with my mom (thank goodness for grandma's!).  Will find out tomorrow if we are in the bubble for another week.

But - the good news from Monday's appointment more than made up for being back in bubble-land.  We found out Charlotte will be DONE treatment in July!  That's almost 6 months sooner than we were expecting.  So excited she will be done before school starts - no steroid explanation needed for her Kindergarten teacher.  Stefan will be turning the big 40 next September - so we will be planning for a big party in August!

Stefan's biannual MRI is Wednesday.  My anxiety started early this round since there was a memorial for a friend from support group with the same tumour/treatment as Stefan, and Stefan has been tired lately.  I'm sure his tiredness is more from September start up and back to work/routines - but I will be relieved to get past Wednesday.  Send positive thoughts our way - and I'll send some back - please and thank you!