One done

From July/Aug2015

Eila and Joel returned home tonight from her first inpatient chemo stay.  Overall I would say things went about as well as we could have hoped for (i.e. she wasn't sick).  And all Eila was interested in was seeing and snuggling Sloan!

From July/Aug2015

Now we'll see how she does over the next 2 weeks -- she gets blood work done twice a week so we'll know when her counts start to recover.  Hopefully she'll stay healthy and everything will stay on track.  Her next chemo is scheduled for the day after the start of kindergarten...

Saturday's chemo

Everything went smoothly today at the hospital.  Eila and I got lots of good sleep last night and woke up to learn that her foley bag had accumulated more than her penrose bag overnight.  This started our day off on the right foot.  We had a quiet morning watching a movie, practicing blowing bubbles, and coloring.

From July/Aug2015

Daddy and Annikka came after lunch so we could all spend the afternoon together.  We did art projects together, 

From July/Aug2015

From July/Aug2015

and watching another movie (under warmed blankets).

From July/Aug2015

Annikka and I headed home after Eila's chemo got started this evening, but Joel reported that they had a nice night.  Eila did great at dinner, eating half her personal pizza and a Haagen-Dazs ice cream cup -- yay!  Hopefully this means that her tummy is finally settling down after Thursday's chemo and she'll be feeling more like eating.

It was a good day overall, Eila's only complaint was that she missed Sloan.  Joel tried to help by making her a special piece of art for her room.

From July/Aug2015

But I think this little booger misses Eila too!

From July/Aug2015

Friday's update

Today was a little less chaotic than yesterday.  I talked with urology twice -- we are back to just watching her output again, hoping that more will start coming from the catheter and less from the penrose.  It sounds like they'll consider making adjustments if that hasn't happened by the next time she's in the hospital for chemo (mid-September).

Eila's only complaint for today (besides missing Sloan) was that it hurt at her penrose drain.  We had an ostomy nurse come by when I changed the bag and adhesive because she was saying that it itched and hurt when she moved (or it was bumped).  Eila's never really complained about her drain before, so we wanted to get it checked out.  Her skin has also become a little irritated under the adhesive (warning: graphic picture to follow).

From July/Aug2015

In case you were wondering what a 6 week old penrose drain looks like, this is it.  The nurse gave us a few new things to try, and we gave Eila Tylenol for the pain, so hopefully we can end this problem quickly.  We also found out from the urine culture that Eila does have an infection so she's getting additional antiboitics to help clear it up.

Otherwise, today Eila got just 1 chemo drug and I got to learn how to give her a growth factor shot.  She'll need a shot next week to help her white blood cells recover faster.  Originally we were told I would have to give her shots for 8-10 days for her counts to recover, but luckily she'll only need one (approximately 36-48 hours after chemo), and luckily it's covered by insurance (super expensive!).  I'll let you know how that goes...


In happier news for today, Grandma & Grandpa came to visit!  They spent the afternoon with us, doing art projects, reading stories, and just hanging out (giving me a little time to go out for a walk).

From July/Aug2015

From July/Aug2015

Eating today was a little hard.  Although she's getting nausea medicine, I don't think Eila's stomach is quite right.  After attempting a few more new items from the hospital menu without much success (it's hard to find something that tastes the same as it does at home), we got her a Yumm bowl for dinner.

From July/Aug2015

We are lucky that one of her favorite foods on the planet is available fairly close to the hospital (on PSU's campus).  Hopefully all that sour cream she likes stirred in will slowly add up.  Then after dinner, she played nurse with the nurse and with chemo kitty.

From July/Aug2015

From July/Aug2015

New chemo

Today Eila and I came up to Doernbecher's to start her new chemo regiment.  And we came with lots of new questions/concerns.  On Sunday, the penrose drain in Eila's side (draining the hole in her kidney) suddenly stopped draining.  Joel and I were concerned about this because it was the one warning that the Michigan doctors gave us - neither drain should suddenly stop all together.  But it's been more than a month since her surgery and when the penrose stopped, the volume in the catheter increased.  The urologists at Doernbecher's thought this was a good sign and said we should just watch her output for a few days.  So Sunday, Monday, and Tuesday she had no output from her kidney drain, but then on Wednesday she complained her catheter hurt and everything flipped back the other way.  Wednesday and Thursday, almost all her output was through the penrose drain (which also smelled really bad) and her catheter was empty.  Ugh!

So when we arrived, they checked her catheter tubing, sent a urine sample from the penrose to culture, ran extra blood tests, and got an ultrasound -- all before she was admitted to the hospital for chemo.  The good news is that her catheter is working fine (it was replaced just last week), her blood tests all came back showing good kidney function, and the ultrasound had no signs of urine accumulation around her kidney.  We have to wait a few days on the culture to find out about an infection, but she's already on antibiotics.

And now for chemo ...  For the second half of her treatments she will be getting 3 new drugs over multiple days, which requires her to stay in the hospital.  The drugs themselves are giving over an hour or so, but Eila needs to receive continuous iv-fluids while these work through her system because they can be too toxic for her kidney.  Chemo itself went smoothly today, and so far she isn't experiencing any nausea.

From July/Aug2015

There's construction on the hill outside her hospital room, and Eila's interested in watching the equipment.  I'm glad it's not noisy and that it offers another distraction.

And finally, Eila's oncologists are concerned about her weight, or I should I say her lack of weight.  Since surgery, Eila has fallen off the charts again and the nutritionist would like her to start an appetite stimulant.  I'll be interested to see how this goes because Eila's never been a big eater and she rarely wants a snack between meals.  This stimulant would hopefully encourage her to eat every 2-3 hours, so we could get more calories in her more often.  Now we just have to come up with some higher calorie/higher fat snacks that she will eat, instead of her usual preference for things like carrots and strawberries.

Lots of cuddling

From July/Aug2015

We have really been enjoying our new kitten.  She's so incredibly easy-going, we really lucked out.  Sure, she runs around playing (loves the cat dancer), but she spends much more of her time sleeping and snuggling.



The girls LOVE cuddling with her and holding her like a baby.  She is happy to sit with them, even belly up.

From July/Aug2015

From July/Aug2015

From July/Aug2015

From July/Aug2015

We were told that she was 12 weeks old, but she seemed big.  The vet estimates she's closer to 16-18 weeks old.  Although we didn't plan it, I think having an older kitten may have worked in our favor.  She's purr-fect for us.

From July/Aug2015

Meet Sloan!!

From July/Aug2015

It has been 4 (long) years since Oliver died, and there have been many, MANY requests for a new cat.  But Joel held strong, he was tired of cat hair.  Then he spent 2 weeks in a hospital listening to Eila tell every doctor and nurse that came through the door that she really wanted a cat but dad says no.  It finally wore him down ... We spent the last week or so looking for the right new addition to our family, and got to surprise the girls last night with Sloan!

Eila didn't believe it at first and thought Joel was just joking with her.  I had to reassure her that Sloan was our forever cat that got to stay at our house.  Annikka's mouth dropped open and she wanted to jump up and down screaming, but luckily knows that's not the way to impress a new kitten (who's only 12 weeks old).  Needless to say, there are 3 VERY happy girls at our house now.  We love her so much already (be prepared for more pictures in the future).

Back again

Eila's radiation is done and we're working on getting back to "normal" life again.  After 4 weeks away, I finally got to go back to work.  So Mr. Jay was back today, too; Eila was happy to see him.  She has a two week break in her treatments now, then she checks into the hospital for her new chemo regimen.

But for now, I think we are all just happy to be back.

From July/Aug2015

Radiation #3, Week 10 chemo

Today was Eila's third radiation treatment, so she's half way done now.  It was quick and simple again.  Eila knows what's going on and that she only has to be still for a few minutes now. We took a few more pictures today because Eila wanted to know what it looked like.

From July/Aug2015

The radiation comes from the big orange panel above her, and it rotates around her body during her treatment.  All the green lines are what they use to level and adjust her position; and if you can see the slightly lighter area circled in marker, it's the area of the right kidney (although I believe actual target is smaller).

From July/Aug2015

This afternoon one of the marking stickers on her belly fell off.  We stuck it back on as best we could, but now we'll see if tomorrow will still go as smoothly... 

She also had her week 10 chemo appointment today, the last out-patient chemo.  Eila watched a movie and ate snacks, no problems, while I talked to the doctor about what's ahead and what kinds of situations we may encounter.  This is a never ending learn process.

From July/Aug2015

Starting radiation

From July/Aug2015

 
Eila started her radiation treatments yesterday, and was shuffled back and forth between hospitals in a "Doernbecher kids' taxi" (aka a wagon).  Things are going surprisingly well so far, they say it could take 1-2 weeks for side effects to set in.  But she did so great being as still as a statue on Monday that she gets to bypass sedation for the week.  This is great because it means she has no limitations on eating and her appointments don't take very long.

It was very intimidating to see her lay down on the table Monday afternoon.  But she was very brave and determined to be still.  She climbed into her body mold (that is designed to hold her in the extra same position each time) and reached her arms over her head to grab the bar.  The radiation team leveled and lined her up, then I gave her one last kiss and went out of the room.  They close a giant door (it's 5 doors thick!) and moved to their "command stations" (at least that's what it looks like to me).

From July/Aug2015

I listened as they verified her positioning and got all the settings just right.  The doctors stopped by to check on things, then came out to talk to me as the light above the door turned on -- explaining that she would be done in 90 seconds.  There was a faint buzzing/humming sound while the light was on.  That was it, it seemed so simple.  The door slowly opened and I was able to take her off the table.  First treatment complete, five more to go.

Today's treatment was very quick because they already had all her settings in the system now, she was in and out in under 10 minutes.  Tomorrow she has both radiation and chemo, her last "easy" chemo appointment.