Wrong Direction

The home nurse came back yesterday to change Averi's broviac dressing (it has to be changed once a week) and draw some blood to make sure that Averi could go in for the biopsy on Monday.  Once again, things are not doing what they are supposed to be doing.

Averi's doctor called us today to let us know that her neutrophils (which were 630 on Monday and have to be 1,000 to start the next cycle) are now at 503.  Tell me if I'm wrong, but isn't that the wrong direction?  That is even lower than it was when she was discharged last week.  Apparently it's nothing to be concerned about but it sure doesn't make me feel better, that's for sure.

So, we have to go in to the hospital early Monday morning to have her blood work done again (thank goodness for her broviac) and if her levels aren't high enough then they will send us home and forget about doing the biopsy.  I'm assuming that if they aren't high enough, she will have to go back in every couple of days to have her blood rechecked until it is safe to move on with cycle 2.  I'm not even pretending like I think her levels will be fine by Monday.

Until then, we will continue to enjoy our time at home and try not to think about the many months at the hospital looming in our future.

First Haircut

Averi's hair is getting really thin.  She totally has a 'new baby bald spot' on the back of her head since her visit to the PICU and having the CPAP strapped to her noggin.

Normally you just ignore the long wispy baby hairs that didn't fall out when the new hair started growing in until they are long enough not to matter.  However, Averi's have become very noticeable as of late and they finally drove me over the edge.  I got out the clippers!

It's sad that she got her first haircut so young, but the truth is that soon it will all be gone anyways so it might as well look decent.  Here's the BEFORE (note the side wispies):

I waited until Dan came home so I could have some help distracting her.  We covered her with the cape and she thought it was hysterical (so did I).  She kept kicking it from underneath and giggling.

I was going to just cut her hair with scissors but her hair was so thin I couldn't figure out how to do it so I just got out the clippers.  Surprisingly, she held really still if we sang to her.  I even did a little blending on the sides.

AFTER (no more wispies!):

Okay, the truth is that she looks like a boy - but less like a cancer patient (I'm not sure which is worse).  I wish I'd left the top a little longer. Apparently the largest guard wasn't long enough but her hair was too thin to hold and cut with scissors. :)  Oh well, she's still adorable and maybe this will help me actually look forward to her hair being totally gone. =P

18 Months Old!

Yesterday, Averi turned 18 months old!  That's a whole year and a half.  I can't believe it.

Here are some of her present accomplishments:

• waving
• giving lots and lots of kisses
• rubbing her hands together as if she has an evil plan and tapping toys together (she is so close to clapping it's not funny)
• she has all 4 molars and 2 top teeth
• sitting really well and rotating around on her bum (I often find her facing away from her toys)
• occasionally leaning forward on her hands
• dancing aka bouncing her body up and down
• take toys in and out of a container
• eating small pieces of fruit (normal and dried) and doing awesome with baby purees
• drinking from a straw with thickened liquids
• babbling, she's really good at W sounds (the only baby I know who does that)
• blowing raspberries and popping her lips
• sucking her thumb till it blisters on the end
• wearing 9 month clothes
• smiling and laughing like crazy!

We are so proud of Averi and all that she is accomplishing!

A Break

We headed to the Hematology/Oncology Clinic today to have Averi's blood work done and to find out when she needs to return for Cycle #2.  Kaili tagged along and hung out at the Sibling Clubhouse.

(This is how cheap people with tiny kids turn a single stroller into a double stroller.)

The appointment went really well.  Averi sat on the exam table and shredded the paper while I talked with the doctors.  Dr. Pillay, Averi's Oncology fellow, mentioned that she's never seen Averi so excited.  Yeah, that's right, a little dose of home goes a long way!

The visit didn't go how I thought it would, but it wasn't bad, just surprising.  The first surprise was when I asked the NP how this treatment will affect Averi since the chemo is administered on days 1 and 2 and 8 and 9, instead of just four straight days.  She said that usually, if everything goes well, the chemo is given the first two days and then the patient can go home for 5 days and return for the second dose since that's about the time the blood counts start going down anyways.  I realize that's usual and Averi doesn't know what that word means, but there's at least a chance.

She then reminded me (I forgot, but probably on purpose) that Averi needs another bone marrow biopsy before they can start Cycle #2.  Seriously, I am so sick of her going to the OR and returning with issues.  I am not past putting a sign on her broviac that says, "please clean with alchol before using," and one on her G-tube that says, "Do Not Touch!"  Luckily, if this one comes back with good results, she won't need another one for several months.  Let's hope for good.

The last thing the NP explained was that they wanted to wait until Monday to have Averi come back in so that she could get a little break to finish recovering from the PICU visit.  I asked her if there was any way we could start on Thursday (the official day 28) or Friday, not because we love the hospital, but just in hopes of her being home by Thanksgiving (which is 3 weeks from Thurs).  She said she understood our concern but that it depended on Averi's blood work results and she would give me call when they returned.

The good news was when she told me that sometimes, sometimes, they let patients go home for a little while during the day for special occasions, like holidays.  It only happens if their counts are starting to come up and they are close to going home but not quite ready.  How cool would it be if she could get a field trip from the hospital while my family is in town for Thanksgiving or especially for Christmas?

Later this afternoon, she called to let me know that Averi's neutrophil counts are at about 630 and they have to be at 1,000 to start the next cycle, which isn't very likely by this week.  I definitely don't want to rush things and make Averi sicker than she has to be, so we are going to wait until Monday to have her admitted.

The tentative plan is to have more blood work done on Thursday to check her neutrophils and then have her admitted on Monday for her biopsy.  Her chemo will start either Tuesday or Wednesday, depending on when the results get back, and then hopefully we can come home for a few days at the end of the week before she gets the second dose.  Until then, we get the rest of the week off to hang out at home and spend more time as a family!

Super Averi

This year's Halloween costume wasn't just a costume...it was a fact.

I've never seen someone endure so much and still give a smile and a kiss the way Averi does.  Keep on fighting Averi, you truly are Super!

IV Infusions

I thought keeping up with Averi's feeds, making formula, priming her pump, cleaning up her leaky G-tube, counting calories, and convincing her to eat was time consuming...and then I learned how to do IV infusions.  They are not only time consuming and necessary at inconvenient times, they are extremely boring!

We learned this the hard way at midnight last night as we did our first infusion.  It took over 30 minutes to give her two antibiotics totaling maybe 11 mls.  You have to flush her line before and after each drug and you can only push in 1/2 a milliliter every minute.

(The 30 minute setup - it even requires an instruction card.)

Not only are you completely paranoid the entire time that you're not going to get the cap clean enough to keep her from getting sick again, but you can't do anything but sit and watch a clock and slowly push in the meds and change out the syringes- three times a day.

The truth of the situation, however, is that it is worth every minute that we get to spend as a family together and healthy at home!

Other than trying to figure out the new feeding schedules and medications, we did nothing but hang out today and occasionally go through our large pile of stuff we brought home from the hospital.  Most of it remained in the pile to return with us next week.

You better believe we are not going to go anywhere this next week and we are going to savor it.

Home Sweet Home after Cycle 1

After 27 days at the hospital, Averi came HOME today!!!

When the resident/intern/doctor who does all the dirty work but can't make any final decisions came by this morning, he said that Averi's white counts had gone down a little so he didn't know if we would still get to go home.  Lucky for us, her primary doctor isn't very conservative and later told me during rounds that her white counts were about the same.  (I'm still not sure if that makes me happy or scared.)

He also said that her blood work didn't look right yesterday and he had it redrawn in the afternoon only to have it come back exactly the same.  Apparently her platelets are now normal (in the 130's after she's been getting transfusions for being in the 20's), and her neutrophils are over 500 (the limit for her to go home).

He asked if I was okay adjusting Averi's feeds at home (I'm pretty sure I've been doing that her entire life) and how I felt about giving her antibiotics through her broviac port.  I'm not gunna lie, it was a little scary knowing I was going to be given direct access to the same port that made her septic, but I'm pretty much willing to do anything to get her home.  So I said we could handle it.

Once it was official that she was going home today, I started taking loads to the car.  Just when we were about ready to go, the nurse informed me that the home nurse who was supposed to meet us at home to teach us about IV infusions had bailed on us.  We had to wait a couple more hours until another home nurse was found, and then we were finally discharged!

It was so weird leaving the hospital with Averi and driving home.  When we got there a man was waiting with a delivery of her antibiotics and the nurse arrived 15 minutes later.  Little did we know that there was so much paper work involved when using a home nurse, and she stayed for over 2 hours.  It made for a very long day!

We are really looking forward to a nice relaxing day tomorrow...at home! :)