Second Christmas

We got to have two Christmas celebrations this year!  First in Corvallis with my family (previous post), then in Eugene with Joel's parents.  As always, it was filled with many happy memories: stockings,

From Nov/Dec 2012

From Nov/Dec 2012

toys,

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From Nov/Dec 2012

From Nov/Dec 2012

cooking,

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From Nov/Dec 2012

books and crafts.

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From Nov/Dec 2012

And Eila discovered the joy of Grandma's baby Jesus (there's something very magical about Christmas when you're 2).

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4 Busy Cousins

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Aaron, Kristin, Taisto, and Elin came for a Christmas visit.  It was pretty crazy around our house with 4 kids running around, but it was so great to see the cousins playing together and having so much fun. It made for a very special Christmas.

From Nov/Dec 2012

I think we were all happy with how well they all played together since they hadn't been together for so long.  Annikka is baby-crazy and Elin was the perfect baby to have around, just old enough to be able to do things and interact but not old enough to protest or have a different opinion.  Eila and Taisto were two peas in a pod and ran all over together.

From Nov/Dec 2012

From Nov/Dec 2012

From Nov/Dec 2012

From Nov/Dec 2012

Of course we took lots of pictures and you can find more in the web album.  It was a really fun visit and I hope we get to see them again soon.

Snowy day

Grandpa braved the snow to babysit Eila today.  And they ended up having a pretty good time in it.

From Nov/Dec 2012

An angel & a lamb

From Nov/Dec 2012

Today was the Christmas program at Grace, and we had an angel and a lamb in it this year.  We weren't sure ahead of time if Eila was going to be able to do it, but she was feeling well and had a lot of fun (she LOVED wearing the ears).

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Eila got to have a snack during the practice the day before, so was a little disappointed that snacks weren't happening again.




It was Annikka's first year getting to be in the angel choir, and she really liked it.  She was also very proud of Eila as a little lamb.

From Nov/Dec 2012

This is chemo ...

There are days that Annikka has a little trouble with the fact that "Eila gets extra time with Mom & Dad" for her doctor's appointments, so we brought her along to a chemo appointment to give her the chance to see what Eila goes through.  Until now, Annikka had only come up to visit Eila during her stays in the hospital after surgeries and didn't know what happened during the numerous chemo trips.

Of course, we started with Eila's new tradition, a ride on the sky bus.

From Nov/Dec 2012

Then we ventured up to the 10th floor.  The nurses were all so very sweet to Annikka, giving her extra stickers and lollipops and talking to her about Eila.  Eila was an experienced cancer patient, very calm and collected, showing Annikka how brave she is at the doctor.

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The girls looked at books, ate lunch, and played on the ipad together.  It went well, and Annikka realized that Eila's chemo days are just a lot of sitting around snacking in the doctor's office (and sitting in the car).

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When we got home that night, we decorated the Christmas tree, after playing dress up.

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From Nov/Dec 2012

Polar Express

From Nov/Dec 2012

We went on the Polar Express in Hood River.  Annikka was so excited.  She has loved the book, and just watched the movie the weekend before while at Grandma & Grandpa's house.  And Eila was equally excited, but just because we were going to RIDE A TRAIN!

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It was a lot of fun, and they did a great job following the ideas from the book and movie.  The girls got their tickets punched by the conductor,

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From Nov/Dec 2012

while enjoying hot cocoa and cookies.

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From Nov/Dec 2012

Santa came through the train and everyone got to sit on his lap to tell them what they would like for Christmas.  (This is the first picture we've ever had with Santa.)

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Santa gave everyone a bell as their first gift of Christmas.  Here's Annikka, Ethan, and Chloe showing off their bells - and singing Christmas carols.

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The girls continued shaking their bells for the rest of the day (making for a fun car ride for Mom & Dad).

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It was a great train ride!

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Final & first

Today we went to the Beaver's last home football game for the year, a little later than usual because it was rescheduled from September 1.  So Joel & I went to the first and last games of this season.  And it was also Eila's first football game (Annikka is with Grandma & Grandpa for the weekend, so she'll get to have a first football game another time).

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She thought it was too loud - she liked hearing the band but not the announcer.  So she ate popcorn without taking her hands off her ears.

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She made it to halftime, then told us she was all done with football and ready to go home.  Although she handled it well overall, we will not be in a rush to bring the kids back again soon; I think we'll stick with basketball for now.

Fever update

All of Eila's blood work came back negative for bacterial growth ... so what caused her Thanksgiving fever?  Your guess is as good as ours, we're just glad it didn't result in more time in the hospital.  A few days after the ER visit, she was complaining her ear hurt.  During chemo she gets antibiotics every weekend, so we waited to see if that would take care of it, but her attitude only slightly improved.  After the weekend, she went back into see the pediatrician who confirmed that she had an ear infection and gave her different antibiotics.  Within a day this made a BIG difference in her attitude, so her ear must have been making her pretty uncomfortable.  And now she's getting back on track.  Hopefully our Christmas break will go better, or at least involve less time with doctors.

Happy Thanksgiving?

Yesterday Eila woke up with a cough and a slightly stuffy nose. Today was about the same, although she seemed a little more uncomfortable. We had a fairly typical first half of the day, but when she woke up from her nap she had a fever of 103.4! While Eila has a port, she has to go to the emergency room whenever her temperature is above 100.4 to be checked for bacterial infections. So as Grandma, Grandpa, Aunt Rachel, Uncle Jerod, and cousin Ruthie walked into our house, Joel, Eila and I walked out the door for the hospital (we were told that Annikka was a wonderful hostess).

From Nov/Dec 2012

Luckily all of her lab work and x-ray came back good, so we were able to go home after she got antibiotics. Because her blood cell counts were low on Monday when she got chemo, we were nervous that she could be admitted because her numbers were too low -- we were so happy that wasn't the case. We'll have to wait for 3 days to hear back about her blood cultures and know there's no infection. So today we are thankful that Eila's back home from the hospital and sleeping in her own bed.

We'd also like to thank all our wonderful friends for giving us an ipad. As this photo shows, it is the best distraction while at the doctor, she's kept busy enough that we can actually talk to the doctor.

Week 13 - Halfway

From Nov/Dec 2012

Today was week 13 in Eila's chemo schedule, and the halfway point means that she had an ultrasound and x-rays today to look for potential new growths.  Although we went through this process last year, it felt much scarier today after our ultrasound surprise/fiasco this summer -- Eila has never appeared sick to us when her previous tumors were found.  And when we were researching metachronous bilateral Wilm's tumor back in August, we read reports of children who developed new, fatal tumors (often on the lungs or liver) as early as while still undergoing chemo.  Needless to say, this appointment was weighing heavy on Joel's and my minds.  But luckily nothing was found today, so we can breathe a little easier again.

Chemo went ahead as scheduled, although her blood counts were right on the low end of acceptable.  This was another first for her, usually the nurses comment on how good Eila's counts are compared to other patients.  Hopefully she will stay healthy this time and she can rebound quicker before the next double dose in December.

A Gradual Rebound

Eila has done better than I expected with this round of chemo.  She has mostly been just more worn out and tired, but that's not too surprising.  And she was sick last week but from a stomach virus, not chemo (and she shared it with Grandpa, Dad, and me).  But I think she's finally on the rebound (or at least approaching it) from this last time, so we were able to get out to see a Beaver basketball game. 

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Muffet & Spider

We live in a sweet little town that offers an afternoon downtown Halloween for little kids, and every year we begin our downtown trick-or-treating with a stop by Joel's office.

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Downtown is always fun, even if it's a little rainy. Here's Annikka with Hirut and Amani, the other members of our annual tradition.

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From Sept/Oct 2012

And then Little Miss Muffet and her spider went out with Dad for a little neighborhood trick-or-treating, too.

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From Sept/Oct 2012

Happy Halloween!

Another Monday

It was a long afternoon at Doernbecher but everything went very well. It started with smiles and a ride on the sky bus (we've created a monster). We tried something new for her blood draw - the nurse did it before securing the needle in her port with tape - and it worked really well; hopefully we can try it again next time and see if it was just luck.

A medical student did Eila's exam today, and she was a great sport. Her doctor commented that not all 2 year olds would be as pleasant as she was. We learned that her LOH results came back negative, which is good news because her tumor had not lost heterozygosity and her cancer will be more responsive to treatment.

Chemo went smoothly, she received Vincristine and Doxorubicin. The first time she had Doxorubicin she was sick for 12 days and her hair fell out, so we're interested to see what happens this time (preparing for a rougher period).

After oncology, we met with her nephrologist again. She is very happy with how well Eila is doing overall. We had a lot of questions about blood pressure, growth, hydration, activities, transplants, etc. and she patiently went through it all with us. If Eila maintains her current numbers, Dr. Al-Uzri said she would not need any additional medications or a transplant within the next 2 years. Obviously it wasn't exactly the news we hoped to hear, but we also realize that it would be unrealistic to think she could forecast out much further. Eila will have an ultrasound with her next chemo treatment in 3 weeks, and Dr. Al-Uzri will also review it.

We now have a 2 week break from DCH as Eila begins the spaced-out chemo treatments.

Halloween preview

Halloween is just around the corner and Annikka's Halloween costume arrived today. Luckily we were only waiting for one costume because Eila thought Annikka's old spider costume was great. And Annikka decided that she wanted to be something that would go with a spider ...



If you're wondering about Miss Muffet's bandaid, Annikka fell off a chair today and landed on the corner of the side table. This resulted in a hole right above her lip. We took her to the doctor is see if she needed stitches but he didn't think a stitch would improve it (although it's still bleeding several hours later, so I wonder if we should have done it).

Got snow?

Annikka got her first pair of skis! She and Joel are so excited for winter now. Hopefully she'll quickly pick up where she left off last season.

From Sept/Oct 2012

In other Annikka news, she had her 5 year old check up this week. She is 44" tall (70th percentile!) and 41.8 lbs (60th percentile). She was due for two vaccines, but we had to postpone her MMR until Eila's off chemo because it's a live virus.

More water needed

We persuaded Eila to drink lots of water last night before going to bed. It seemed to help because her test results were better today. Her creatinine level was back to 0.34 (which is the upper limit for her size, but within the limit).  The rest of her test results were good, too, because the doctors are no longer concerned that Eila's kidney is not recovering.  Instead, it looks like she was just really dehydrated.

This was a hard way to learn that kids Eila's size are supposed to be drinking approximately a liter of fluid a day.  How in the world are we going to get Eila to drink that much, when she only drinks milk and water?

Called back

Eila had a good time at her chemo appointment today.  The doctor and nurse were surprised at what a big eater Eila is since her stay in the hospital.  During her appointment she had a bowl of fruity cheerios, a big bowl of edamame, and part of a turkey sandwich (thank you to all those who have given us Starbucks gift cards).  I guess that's what seven days without eating changed for her.

We arrived at DCH about 30 minutes early, so like last week we had time to ride sky bus (tram) again.  And, like last week, Eila LOVED it.  

Unlike last week, our nurse was able to access Eila's port and draw her blood sample quickly and easily.  So instead of spending over an hour getting poked and re-poked, Eila only had to spend five minutes with a nurse in her face.  It was the least anxious I've seen Eila in a while.

Unfortunately, on our ride home Dr. Thomas called to tell us that the nephrologists had reviewed Eila's blood work and was concerned that her creatinine levels were too high -- they were at 0.34 last week, 0.84 this week.  He asked us to return to DCH tomorrow (Tuesday) to run more blood tests and get IV fluids.   Dana and I don't really know what this means (Dr. Thomas didn't speculate much on the phone), but we do know that high creatinine levels can indicate that your kidney isn't working.  It sounds like it could also mean that you're simply dehydrated ...  

So, unfortunately, Dana and Eila are going to head back up to DCH again tomorrow to try to figure this out.  We are all hopeful that it's simply a matter of Eila not drinking enough fluid -- something she's known for -- and that there's nothing wrong with her recovering kidney.

Sky bus

Eila was back up in Portland today for chemo, but all she was interested in was the sky bus (aka OHSU's tram).

From Sept/Oct 2012

While in the hospital, as well as on many previous visits to Doernbecher, Eila watched the sky bus go down and up the hill. But unfortunately she was not allowed to ride on it as a patient. And then we were discharged so late at night that she was not able to ride it before we came home.

She has been talking and talking about it since we've been home, so we went up early for her appointment so that she could finally ride it before getting connected to tubes again for chemo.

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She was so excited to see everything as we went down the hill and pointed out the trees, cars, buildings, and river to us.

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You can see the excitement as she waits to go back up the hill.

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She was one VERY happy 2 year old.

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Chemo went fairly well. They had issues again with her port not returning blood, so poor Eila had to  be accessed (i.e. poked & taped) twice. But she was a trooper through it all.