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 :)

Volunteer fun

Today was a good day, due to the great volunteers that were on the floor.  The morning started off quiet, but the CHAP art group was here in the afternoon.  Eila continued her excitement for Halloween today and requested a pumpkin art project.  The amazing CHAP ladies came through with quite the pumpkin, made from a inflated medical glove with a papier mache type covering.

From Sept/Oct2015

The glove's thumb was the stem ...

From Sept/Oct2015

Eila had so much fun painting it.  And much to everyone's surprise, she kept it just as a pumpkin, no jack-o-lantern face for her.

From Sept/Oct2015

She went on to make a couple of ghosts and a drawing of a haunted house.  We've got quite the Halloween hospital room (in September).

But then her day got even better, because the BEST volunteer came in after dinner.  Eila was the only patient in the playroom when he arrived, and he gave her his undivided attention.  They painted, played games, and eventually started a parade.  I don't quite know how the parade started because I left to get Eila a Yumm bowl for dinner, but Eila's newest friend was clearly up for any adventure.  When I came back, Eila and another boy were parading around the halls.

From Sept/Oct2015

The baskets on their heads were to keep away the bears.  After several laps taking turns on the trike, they switched to marching with musical instruments.  The oncology floor is only about half full tonight, and it's mostly younger kids (under 8), so the parade grew and was quite the pre-bedtime adventure.  Eila was SO happy, it was great to see her and the kids having so much fun.  When I finally had her wrap things up and come in for bed, she couldn't stop smiling.  She said over and over, "this was the best day at the hospital!"  I didn't get a chance to talk to the volunteer again before he left but I hope he knows how extremely grateful I was for him and all he did to make this such a fun, exciting Saturday night on 10 South.

From Sept/Oct2015

Another Friday at DCH

Chemo wasn't until the evening again, so the day was spent hanging out at the hospital getting IV fluids, watching movies, doing art, and trying to find something that would keep Eila's tummy feeling okay.  First, Eila watched a Scooby-Doo movie while waiting for breakfast.  She said her felt okay and ate about average.  Then, we painted in the activity room.  After a lap around the floor, Eila read a story to me.  She read the whole book and was so proud!  It's going to be an exciting kindergarten year working on reading.

From Sept/Oct2015

Although she's getting nausea medicine around the clock, Eila's tummy still wasn't quite right.  We tried adding another medicine.  It took away her uneasy tummy, but felt her feeling kind of loopy -- she told me that she could feel her skin getting smooth and tingly.  So she watching another Scooby-Doo movie while we waiting for things to settle back down.  Then Grandma arrived and we headed back to the activity room for arts & crafts. 

From Sept/Oct2015

Eila's getting really excited about Halloween, so the art team came up with the prefect craft for her, a witch!  It was a fun project and Eila was absolutely delighted with how it turned out.  And she was excited to get to show her witch to everyone the rest of the day.

From Sept/Oct2015

From Sept/Oct2015

What do you think, our two purple and black Halloween witches... 

From Sept/Oct2015

She tried yet another anti-nausea medicine in the afternoon but this one made her drowsy.  She took a 2 hour nap and was very upset when she woke up.  But we had a quiet night watching two more Scooby-Doo movies (yes, it's her new obsession) while getting chemo.  Although it was a bit of an issue all day, luckily Eila didn't ever feel bad enough to vomit and was still able to eat.  Hopefully her tummy will do better tomorrow. 

Second stay

Yesterday was Eila's first official day of kindergarten and she was very excited to go back (she already told me that she might have a new best friend in her class).  It was another fun day and we celebrated again with ice cream.

From Sept/Oct2015

But today she had to miss school because we are back at Doernbecher for her second round of in-patient chemo.  Unfortunately we aren't sure if the hole in Eila's kidney is improving and we're still having issues with Eila's bags, meaning that the penrose drain in her side is still much too high and it's been leaking almost daily.  To try to get more of her total output into her catheter bag, the urologists are talking about extending her stay until Monday so that her stent can be replaced with a larger diameter one.  Although having another procedure doesn't sound fun, we are very eager to do something that could put less stress on that hole so her kidney will heal sooner.

Overall today was much less busy than her last chemo appointment, no new infections this time and all her blood work looks good.  One of the hardest things about being at the hospital now is that Eila misses Sloan, but this time she's got a little Sloan along to snuggle.

From Sept/Oct2015

Eila's a kindergartner!

Kindergarten has a "gentle start" in our town, which means they start the week after the older kids start and they have a staggered start.  So today Eila got to go test out kindergarten with half of the kids from her class.  She was very excited and so were we.  There was a time this spring when we weren't sure if she would be able to do this, so it was great to get to walk her in today.

From Sept/Oct2015

She walked right across the room, hung up her backpack, found her name card, marked her lunch choice, and sat down.  No problems here.  We gave her hugs and kisses, and walked out the door without any drama -- I admit, there were a few tears the night before.

From Sept/Oct2015

The girls are so happy to be together in the same school.

From Sept/Oct2015

Annikka's in 3rd grade!

From Sept/Oct2015

Today was Annikka's first day of third grade!  I look at her and see such a big kid now.  She was very excited, and a little nervous, for her new teacher and class.  But all went well and she's very happy to be back in school.  When we met her at the end of the day, she was all smiles and reported that she loves it.  Then we went out for a first day treat.

From Sept/Oct2015

Kindergarten starts next week, so we'll have another first day to celebrate.

Rolling along

Things have been going well during Eila's break from chemo.  She gets her blood counts done twice a week now, so that we can see how her body is responding and know more quickly if something needs to be done for her.  In a week, her white cell count went from 19.8 to 3.7, her platelets went from 365 to 105 (need to be 75 for treatment), and her neutrophils went from 17.4 to 0.92 (need to be 0.75).  We are optimistic this is her low, and if so, it's not too bad because she's still high enough to get chemo again and her hemoglobin is still high (10 - she needs a transfusion if it gets below 7).

Watching these numbers is still all new to us.  The nurse's advice was to keep her away from germs more now that her numbers are low ... But school's starting and Eila is very excited to be a kindergartner.   Luckily the nurse agreed that starting kindergarten was worth the risk.  Eila will be checked again on Friday and next week before we go up for her next round.  In the meantime, she's getting as much play time with Sloan as one kitten can handle.

From Sept/Oct2015

Can you believe she's willing to hang out in this doll stroller and be pushed around the house!  We really lucked out with this cat.

From Sept/Oct2015