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.

From Sept/Oct 2012

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.

From Sept/Oct 2012

From Sept/Oct 2012

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

From Sept/Oct 2012

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.

From Sept/Oct 2012

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

From Sept/Oct 2012

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

From Sept/Oct 2012

She was one VERY happy 2 year old.

From Sept/Oct 2012

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.

Pathology update

It's been very nice to be back home this week. Wednesday was a bit rough for Eila still, but she's been feeling better and better each day. The hole from her drainage tube has finally stopped leaking, we are all very happy about that. Her incision is healing, although it's much bigger than the one from last year and it looks much rougher (poor kid will have a pretty major scar from this round).

From Sept/Oct 2012

On Friday, we got back most of Eila's pathology report, just waiting on the LOH (loss of heterozygosity) still. It has favorable histology and clear margins (i.e. they removed all the tumor)! This is great news because it means she won't need radiation on her kidney.

We have been struggling with the issue of whether to increase Eila's chemo regiment. Unfortunately, because Eila's diagnosis (metachronous bilateral Wilms' tumor) is so rare, there isn't a protocol to follow.  However, because Eila's tumor shrank more than 80% in the six weeks of chemo before surgery, our doctors and the experts they consulted believe that Eila's cancer is responding well to her current regiment.  They are recommending that we stick with the current schedule of three drugs - this is a huge relief. Adding additional drugs would have presented us with a whole host of new challenges, including a much sicker Eila and a series of extended hospital stays.  Under our current scenario, Eila's chemotherapy can continue on an out-patient basis.  She goes back up to Portland on Monday for week 7 of chemo, then only 18 more weeks to go ...

We're Home!

We're finally home.  It's been a busy few days since our last update late Sunday. That night surgery told us to expect to leave the hospital Thursday or Friday, which was disappointing.

Nevertheless, we woke up Monday morning excited to know that Eila was finally going to get to eat. The surgeons authorized the nurses to remove her NG tube, and Eila was moved to the clear liquid menu: jello and popsicles.

From Sept/Oct 2012

I don't know if it was the fact that she no longer had a tube sticking out of her nose, or the fact that she was ingesting food, but Eila's mood improved dramatically.   All week, Eila had been (understandably) crabby and lethargic.  Now, we had our happy, darling, sweet Eila back. 

It also helped that, with fewer tubes, we were able to get Eila our of the room a little bit.   We took some long wagon rides through the hospital halls.

From Sept/Oct 2012

From Sept/Oct 2012

We also played in the playroom located on our floor.  Eila was timid at first, and for a while her legs were too shaky to walk.  But by noon she was walking, albeit slowly and timidly.

That afternoon, Eila took a looooong nap (four hours!).  It had been quite a morning.

Tuesday morning, the surgeons stopped by at about 8:00 in the morning to let us know that they had cleared Eila to eat solid food: no limits.  This was a surprise; we thought this might not happen until Wednesday.  They also indicated that if all went well with Eila's eating, we might leave that night!  Given the surgeons earlier prediction of a late week discharge, Dana and I were ecstatic.     

Eila ordered a blueberry muffin, watermelon, jam toast, rice krispies, and whole milk, and she ate almost all of it.  She also shared some tea with Mommy (something she'd been asking for all week).

From Sept/Oct 2012

From Sept/Oct 2012

From Sept/Oct 2012

For lunch, she ate a large hot dog with ketchup (no bun) and drank some whole milk.  She was in GREAT spirits.

Also on Tuesday the nurses unhooked her remaining tubes, the drainage tube and (temporarily) her IV.  All of this left Eila so excited that she refused to take a nap.

From Sept/Oct 2012

Late that night, the surgeons authorized our discharge.

From Sept/Oct 2012

We excitedly packed everything up and got back to Corvallis late in the night.  Grandpa was there to greet us, but Annikka had long since gone to bed.

With surgery behind us, we wait to hear the pathologists' analysis of Eila's tumor.  Those results will determine what lies ahead for Eila's treatment.