Hospital Halloween

Today we headed back up to the hospital for chemo, but first we stopped by EECH (aka Joel's office) for a little Halloween surprise.  His office organized a little trick-or-treating for the girls, too.  They were so surprised by everyone's gifts.  We also got to meet the sweet little puppy who's been hanging out at the office.

From Sept/Oct2015

From Sept/Oct2015

Then Annikka, Eila, and I went to Doernbecher.  Oncology's Halloween party was today, so the girls got to walk around 10 South trick-or-treating at the nurses' stations and doctors' offices.  It was a pretty cute little loop around the hospital and clinic floors for all the kids.

From Sept/Oct2015

We spent the rest of the day riding cars around the hall, decorating her room for Halloween, and getting chemo.

From Sept/Oct2015

From Sept/Oct2015

But the biggest news of the day was the Eila's penrose drain was finally removed!!  Who would have guessed it would have lasted 3 1/2 months, but we are all very happy it's come out.  It was a fast little procedure; Eila only really complained about the stitch being removed (although the nurse had giving her medicine to "take the edge off").  Now we'll have to wait to see how long it takes to seal-up and just what it looks like after it heals.  Pretty excited to know that Eila will finally be going home tube-free!

Halloween fun

We had known for a long time that Eila would be in the hospital for chemo over Halloween.  I can't speak for all 5 year olds, but Eila really likes Halloween (she started talking about it way back in August) so we tried to think of ways to still make this year special for her.  Our friends Amy & Ryan also wanted to help make it special for Eila, and they organized an early trick-or-treating around their neighborhood for her.

From Sept/Oct2015

So 2 whole nights before Halloween, about 20 houses turned their front light on for Eila and Kai to stop by.  Their pumpkins got pretty full.

From Sept/Oct2015

It was so incredibly nice and heartwarming to have some many people (most of whom don't even know her) willing to help give Eila a door-to-door Halloween.  Thank you so much kind neighbors of Hayes Ave, Ryan, Amy, and of course Kai!!

Then we stopped by our beloved preschool teacher's, Ms. Ati, house to trick-or-treat.  She had a special kitty to give Eila to bring along to the hospital.

From Sept/Oct2015

Eila's night was so special, a prefect little Halloween.  And in case you were wondering, Annikka got to have her own special night too -- a Halloween sleepover with friends.

From Sept/Oct2015

Pumpkins

Although things haven't gone quite as we may have planned for the last week or two, we were able to squeeze in carving pumpkins.  My favorite part is the roasted pumpkin seeds, and luckily I have two good helpers to clean out the seeds (Eila loved reaching down into the goo).

From Sept/Oct2015

From Sept/Oct2015

Joel takes on the much harder job of making something recognizable on the pumpkins.

From Sept/Oct2015

Eila wasn't sure at first what her pumpkin should look like.  But our little Scooby Doo fan decided on Shaggy this year - Joel said it was more challenging than he would have guessed.

From Sept/Oct2015

And Annikka went for a classic bat flying by the moon.

From Sept/Oct2015

From Sept/Oct2015

Tomorrow, we all get roasted pumpkin seeds with our lunch.

Checking out

Eila was finally able to check out of the hospital today, a week after going to the emergency room with a fever and infection.  It has been a long week, but Eila is clearly feeling much better than a week ago, and we were ready to head home. 

From Sept/Oct2015

The end of this week long stay was also very interesting because her nurse today was the first nurse she had back at our first stay in Doernbecher when she was just 15 months old with her first tumor.  Joel and I both remember Mandy fondly, she took so much time talking to and helping us through those first scary and confusing days.  She played such a big role in a very monumental time in our lives, it had been funny to not ever see her again.  We had actually both thought she had moved on.  But then there she was, and I recognized her immediately.  (There are several doctors' and nurses' faces who will be forever burned into my memory, although I may not be able to tell you their names.)  It was very nice to talk and tell her about all that Eila has been through in the past 4 years.

And when it was finally time to go, Eila got to leave riding the plasma car she had been riding around the halls this week.  She was pretty excited.

From Sept/Oct2015

From Sept/Oct2015

It is nice to be home, and we hope she'll have a fun few days seeing friends and getting to do a few Halloween activities.  Then we go back up on Friday for another 4 days of chemo.  But she's approaching the end, only 2 rounds of chemo to go.

Good bye stent

Eila had the stent between her bladder and kidney removed today, and all went well.  Now she just one tube away from being whole again -- although who knows how long it will take that hole to close.

Her day started with a visit to the oncology classroom again.  Today she learned about skeletons.

From Sept/Oct2015

She finished making her skeleton just as the nurse came in to tell her that it was time for her procedure.  The stent removal was a very quick procedure, and the doctor was happy with how things went.  The problem with a short procedure, however, is Eila response to waking up -- it involves a lot of screaming and crying, and is hard on everyone around.  We warned them of this before it all started, and we weren't surprised to see the nurse immediately after talking to the doctor.

From Sept/Oct2015

Eila seems to wake up very disoriented and cries for mom.  The problem is the cries don't stop even when mom's there, so it's a long 45 minutes for everyone to get through.  But luckily she settled down eventually, just in time for Superman and Wonder Woman to come visit.

From Sept/Oct2015

Wonder Woman gave Eila a cape and a watch.  Eila loves her new watch.

From Sept/Oct2015

The rest of the day was spent playing and riding the plasma car through the hall.

From Sept/Oct2015

And we were told that Eila gets to go home tomorrow afternoon, after 24 hours of post-procedure IV antibiotics, as long as she has an uneventful night.  That will mean she has spent a solid week in the hospital from this infection ... We are VERY ready to be home.

At a children's hospital

It is funny how different a day in the hospital is when you're at a children's hospital.  Today started with a visit from Huck Finn, the therapy cat.  Eila was absolutely delighted and would have had him stay all day if it was an option.

From Sept/Oct2015

Next we hung out in the playroom for a while and cruised around the hall on a plasma car.

From Sept/Oct2015

Then she went to the classroom to learn about bats with a few other kids.  They heard a Native American story about why bats are nocturnal, played an echolocation game, and did bat craft projects.

From Sept/Oct2015

From Sept/Oct2015

Then after lunch, they showed a movie in the playroom.  Eila really enjoyed watching Home from her beanbag chair with popcorn.

From Sept/Oct2015

Although she did have an overall good day, there were still plenty of doctor visits - by the end of the day, I don't know if she could have handled having one more person listen to her heart and push on her tummy.  She got IV antibiotics and fluids all day, and had a renal ultrasound while waiting for dinner to arrive.  Her day ended with a platelet transfusion and games on the ipad.  Does this count as transfusion #5? I don't know, but I can't worry about it now.

From Sept/Oct2015

Her stent removal procedure is scheduled for midday tomorrow, so it's nice she was feeling well enough to have some fun today.  If all goes well, we're hoping she'll get to go home sometime this weekend.

Eila's ride

Today was a long day of waiting.  The antibiotics and transfusion have helped Eila feel better, which is good but makes sitting around in a hospital harder.  Her transfer to Doernbecher was delayed until the afternoon because there were no empty beds available.  So we spent the day in Corvallis watching PBS cartoons while getting antibiotics.  And then when the time came to go, I told Eila the last part about being transferred -- she was going to ride in an ambulance. 

From Sept/Oct2015

It's hard to explain just how excited this made our not-too-sick little girl.

From Sept/Oct2015

Eila and I got the excitement of riding in the ambulance,

From Sept/Oct2015

while Joel and Annikka had to watch us drive away.

From Sept/Oct2015

The paramedics in the ambulance were very nice to her and it was an easy ride up, Eila actually fell asleep towards the end of it.  And although it seemed like a lot, it was because her blood counts made this ride the safer option (I guess the hospitals couldn't risk letting us drive her knowing her numbers were so low).

From Sept/Oct2015

And when we arrived there was a giant bear waiting in Eila's bed.

From Sept/Oct2015

Tomorrow will be filled with doctor evaluations, hoping to make it onto urology's schedule for Friday.  And hopefully her blood work will also start improving so we don't have to consider another transfusion.

Transferring care

There have been many conversations today, between doctors, between doctors and us, between us, and ultimately it has been decided that Eila should be transferred to Doernbecher's in the morning for the next steps in dealing with her infection.  Here's a summary of the day:

It appears that the Coagulase-negative staphylococcus was a contaminant in Eila's cultures, so we are only dealing with an infection from an Enterococcus species.  Normally this could be treated with a relatively straight-forward antibiotic, but Eila's stent complicates things -- basically it gives the germs a place to hide from the drugs.  In order to overcome this, a second drug would need to be added and this would be potentially harmful to Eila's limited kidney.  Since we have done everything we can for the past 2+ years to be gentle to Eila's kidney, this isn't our first choice now.

The original plan for this week had been to remove Eila's stent on Monday, but that had to be cancelled when she had a fever over the weekend.  So the logical question would be can we remove the stent now to make treating her infection less complicated?  Simply put, that's the plan, we just have to work on getting back onto urology's schedule.  Luckily, Dr. Thomas is working hard to get everyone coordinated on this, and feels it would be best if Eila was in Portland so the various specialists could evaluate her and find her fit for the removal procedure (fingers crossed that it will be on Thursday or Friday).

She has received thoughtful care while here in Corvallis, and we really appreciate all the extra work the doctors here had to do in communicating with all the specialists at Doernbecher.  And now we really hope that the big issues can be resolved quickly so we can return home soon.  What happened to her 2 weeks off between chemo stays...

Still here

Well, Eila is still in the hospital today.  She may get to go home tomorrow, or it could be much longer.  Her white blood cells are still dropping (the shot hasn't kicked in yet), her platelets are also dropping (but this only really matters if she needed a procedure done, which she doesn't), and unfortunately she has an urinary tract infection, or two.

Her urine sample from the ER on Saturday had 2 different things grow out of it, Enterococcus species and Coagulase-negative staphylococcus.  Urinary tract infections can cause damage to your kidneys if not taken care of properly, and since Eila has a stint in place, she has an open system between her bladder and kidney.  She has been giving some antibiotics, but we're waiting to learn what drugs these germs are most susceptible to (the staph infection could be problematic).  Depending on these results our options might be quite limited, so fingers crossed for good news tomorrow. 

But there's a little good news today: her red blood cell count is higher, 9.7, so the transfusion was successful; she's finally over her fever; and she has more energy again.

Fever & transfusion

We seem to be developing a new pattern in our life, but not one we're happy about.  I sat down next to Eila this afternoon and noticed that her bald little head felt too hot.  Two kids were sent home this past week from her kindergarten class with a fever, so it wasn't too surprising to find that she had a temp of 101.3 now.  But it meant we called up to DCH oncology, called cousin Emilie, packed a bag, and headed to the ER.

Eila just had her blood work done yesterday, preparing for her stent removal on Monday, so we knew that her neutrophil numbers were okay but that her hemoglobin was just above the cutoff for a transfusion.  When her blood was checked again tonight, her hemoglobin had dropped to 5.1 - Dr. Thomas said she could get down to 6.5, but then would need a transfusion.  Because it was after 8:00 by now, Eila was admitted for the transfusion (it takes several hours and she has to be monitored during it).

From Sept/Oct2015

She'll get new blood over the next 4 hours and the nurse will check her vital signs every 30 minutes - should be a fun night.  Hopefully everything will look better tomorrow and she'll get to go home.

Third one's done

Monday was a nice day for Eila, her cousin Marie came to visit. They had fun coloring together and watching a movie.

From Sept/Oct2015

It was an easy day at the hospital, this drug combination seems a little easier on her. She was excited to return home to Sloan, who tried hard to put up with some snuggling.

From Sept/Oct2015

Today she wanted to go back to school, and she's super excited for her first field trip on Thursday. Hopefully she'll stay healthy during her 2 weeks off, but then she's back in the hospital for Halloween weekend.

Another Sunday at DCH

Today Annikka and I came up to Doernbecher's to visit Eila and trade parenting positions. Luckily we got here early enough for me to talk with Dr. Thomas during rounds - so happy to have him back. And his good news today was that Eila's weight is looking better, or to put it another way, she's back to Eila's normal. In August she had dropped to the 1st percentile, but now she's back to the 22nd percentile (Eila's always been a smaller kid so her normal is 20-25 percentile). Yay!  Hopefully her nausea won't be too bad this time around and we can keep her in this range.

Overall, her third day of her third stay of chemo was pretty average. She worked on some school projects we had brought along (painting fall leaves and letter sound worksheets);

From Sept/Oct2015

we built stuff in the playroom;

From Sept/Oct2015

From Sept/Oct2015

and we read books together. Eila read one to me (she's really getting good at those early reader books), and I started reading the first Ivy & Bean book to her (she's really enjoying it). Hoping for an easy, quiet night now before her last day of chemo for this round.

Third Stay: Day One

Joel here.

Today we drove up to OHSU to begin Eila's third round of in-patient chemotherapy.  Our mood is much more upbeat than it was for visit two.  Three weeks ago at this time Eila was lugging around two bags -- one on her stomach (the penrose drain) and one on her leg (her catheter) -- and everyone was beginning to wonder whether Eila's kidney would actually heal.  Since then, however, her penrose has stopped draining, and her catheter has been removed.  Eila still has her penrose drain, but because nothing is coming out, she simply has a piece of gauze over it - she doesn't need to wear a bag anymore.  Freed from her shackles, Eila was able to participate in her school's fun run this past Tuesday, and today she literally ran in the halls from the elevator to oncology.

We had a pretty good day overall.

We got a call last night telling us that we might have to postpone our four day stay until next week because the hospital was full. (!)  Fortunately, they called this morning to tell us that a room had opened.  I'm glad we didn't have to completely rearrange our schedule for next week.

When we finally got up here and did her blood work, we learned that Eila's kidney function has improved since her procedure at the end of visit two.  According to Dr. Tilford it is now well within the normal range for a child her size.  Amazing to think about when you consider she has only one-half (or less? or more?) of one kidney.  (Strangely, this means that she is now "eligible" to receive an increased dose of one her chemo drugs ... the one that harms kidney function.)

Today was also the first time in forever that we were able to visit with Dr. Thomas.  He's finally back from his two month vacation, and he stopped by Eila's room early in the night.  It was good to see his face and to get his take on everything that's been going on with Eila over the past two months.  He too was positive.

Eila ate a good dinner of salmon, rice, and broccoli (a dinner she specifically requested), and she went to bed in a good mood.  I am hopeful that we'll have another good day tomorrow.  Grandpa will be visiting, so the odds of that happening are good.