One less bag

Eila came home from the hospital today.  Overall her stay was uneventful, and it was easier being in town.  By Sunday night her white cell and neutrophil counts had already improved and she wasn't running a temperature.  We were all able to visit her and spend a little time together -- Annikka wore a mask because she's getting over a cold.

From Sept/Oct2015

On Monday, we got the good news from urology that Eila's catheter could be removed.  Since her procedure last week, the drainage from her penrose has stopped and the output into the catheter bag increased.  After two months managing these bags, this was a very exciting step.  And Eila's excited to go to kindergarten without a bag on her leg, to feel more like all the other kids.  If we continue to see no output from the penrose drain, she'll soon get to rid herself of the ostomy bag too.

It was definitely different being in town ... Eila was in the same unit as the newborn babies, and the nurses were all very sweet about having a "big kid" around.  She got a great new coloring book and a fun new game that helped pass the time.  But Eila would also point out that there was no playroom, no volunteers, and no leaving her room.  So luckily her stay was relatively short and so was the ride home.

From Sept/Oct2015

She's feeling a lot better and looking forward to going to school tomorrow, bag free!  Hopefully she'll get to double her days in kindergarten before she's back up in Portland for chemo in October.

Birthday weekend

The best thing about a Friday birthday is getting to celebrate all weekend long ... We started with doughnuts on Friday morning before school.    

From Sept/Oct2015

On Saturday, we had family fun when Grandma, Grandpa, and Emilie came over for birthday cake and gifts.

From Sept/Oct2015

Then on Sunday she had a birthday party.  It's amazing how loud and crazy nine 8 year old girls can get while scrapbooking.  She said it was the prefect party, just what she had imagined.  I think this picture of her happy, smiling face sums it all up. 

From Sept/Oct2015

So, even with a little hospital drama thrown in the mix, it was a successful 8th birthday.  Looking forward to lots more smiles and fun with this sweetie in the year ahead!

Another unfortunate first

After a fun and busy day celebrating Annikka's birthday, Eila had a fever of 102.  We took her to the emergency room, while cousin Emilie took Annikka home with her, and found out that Eila would be admitted (although this was not a big surprise after my conversation with the nurse the other day).

Low blood counts + high fever = hospital stay for a chemo patient 

Eila has never been in this situation before and we really struggled with what to do.  She could be transferred by ambulance to Doernbecher or she could stay here.  We talked to the on-call oncologist in Portland and we talked to the local hospital's pediatrician, and ultimately the decision was ours.  

From Sept/Oct2015

We went back and forth about the pros and cons of both stays and finally decided to have Eila admitted here in town.  She doesn't seem overly sick right now (she hadn't complained once all day about feeling bad), so we thought it was worth trying to see if staying near home with help the rest of our lives be a little less crazy.  She will have to be in the hospital for at least 48 hours while we wait for the results of her blood cultures checking for bacteria (a very serious problem when she has a port).  She also needs to be fever-free, and have her blood counts increase (her neutrophils are currently 304 and need to be 500) before she can leave the hospital.  Fingers crossed for a short and uneventful stay.

Annikka's EIGHT

From Family2015

Eight years ago we were amazed to welcome this little girl into our lives, and each year we marvel as she grows and changes, becoming an incredibly interesting, fun person.  She is so caring and passionate, and takes her roll as big sister very seriously.

From Family2015

It's been a crazy year for our family, and Annikka has been asked to make a lot of adjustments and scarifies.  She loves her family so much, and we love her to the moon and back.

Two done

Eila, Joel, and I came home on Tuesday and have been trying to get back into our routines.  Eila's urology procedure went so well on Monday evening, that all of her output for the last 2 days has been into her catheter bag and her ostomy bag has been dry.  Overall this is what we want, but it's always a little hard to know if we should feel happy about changes right away.  She will go up next week for a follow-up appointment with them, so hopefully we'll know if they also feel like the changes were successful.

From Sept/Oct2015

Eila went to school yesterday and today, and things seem to be going okay.  I think she's still adjusting to kindergarten (especially the chaos of lunch time).  But she's happy to be home with Sloan again, and is still absolutely delighted with her new ipad.

Today she had her blood checked and the nurse called with her numbers.  Her white cells, platelets, and neutrophils are all down - the nurse asked if she was more tired.  She is clearly tired, but hanging in there.  Unfortunately her hemoglobin has also dropped to 7.9, so she's getting closer to needing a transfusion.  It's hard and frustrating to think about this - the experts say that after 5 transfusions, a body doesn't "accept" foreign things as well.  We know we need to focus on today and getting Eila healthy, but it's so very hard to try to ignore the tomorrows knowing that she'll eventually need a new kidney.  We'll keep trying to take one day at a time, but I hope there's lots of research dollars going into transplants so that there's some hope that these guidelines will be adjusted before she reaches that point.

Monday's excitement

Eila has never been on the 10th floor of Doernbecher on a Monday before, and boy did she pick an exciting Monday to try it out.  First, there was music therapy today and apparently they take requests.  Eila has been very into Weezer lately, or more specifically, she's been really into the Buddy Holly song.  This was a new request for them, but they came through.



Next, the Healing Hunter Foundation came to visit.  Today was Hunter's birthday, and they passed out iPad minis to the kids on 10 South in his memory.  Eila was "over the moon" excited about this and still can't believe she has her very own mini iPad.

From Sept/Oct2015

Then, Chelsea's closet came with dress up clothes for all the kids.  After kids were dressed up, we had a parade around the floor.

From Sept/Oct2015

But then the fun had to take a backseat for a while because Eila had her stent and catheter replaced.  Before going into the OR, she was in good spirits as she snuggled her little Sloan under warmed blankets.

From Sept/Oct2015

The urologist said everything went well; he replaced her original stent with a larger diameter one, hoping that this will help more drainage through her bladder.  He also checked the placement of the penrose drain and "pull it back" a little.  He said it was right up against the hole in her kidney and thought that it provided too easy of an exit for urine.  Hopefully creating a little space between the tube and the kidney hole will mean less leaking there.  Only time will tell if either of these steps will help Eila get rid of these bags any sooner, but our fingers are crossed.

We warned the OR staff that Eila has rough wake ups from anesthesia, so we weren't surprised when they quickly got us after she was finished.  She needed mom and snuggles for a while.  Eventually we made it back up to her room and Eila had a Yumm bowl for dinner.  Urology wants her monitored for the night, but hopefully she'll be going home tomorrow.

Sunday's painting

Today Grandpa came to visit, and he got to do laps around the floor with Eila while I went for a walk outside -- thank you Grandpa.

From Sept/Oct2015

And after all the fun of last night, Eila was disappointed that there wasn't a volunteer around this afternoon.  (This is especially hard because only the volunteers have the keys to all the craft supplies.)  But again Grandpa came to the rescue and he braved the one-ways of downtown Portland to get Eila nail polish.

From Sept/Oct2015

So, by the 4th day in the hospital, without an entertaining volunteer, we found something new to do ... Mom's nails.  Then we did Eila's too :)