It's Shrinking!!

On Thursday we met with a nephrologist at Seattle's Childrens Hospital for a second opinion.  Joel and I have felt like our oncologist has worked hard to help us understand Eila's situation and options, but have not felt comfortable with the level of interactions or information from her nephrologist in Portland. 

Dr. Symons was very helpful and we were happy that we made the trip.  He went over lots of information and different kidney scenarios with us for 2 hours, and we feel like we understand things much better now.  Eila's kidney will be closely watched during the next several months of chemo, and there will be more decisions in the future (like dialysis and transplant), but the conversation with Dr. Symons helped us understand this better. 

After our morning nephrology appointment, we got back into the car and drove to Doernbecher's for Eila to have an ultrasound to see if her tumor is responding to the chemo.  Although Eila's had more ultrasounds than I can count, we still can't decipher anything on the screen without help from the doctor.  So we were very eager when Dr. Thomas called us to report that her tumor is already 40% smaller after two weeks of chemo!!  This means that the tumor is responding to the chemo drugs and supports the thinking that this third tumor is an independent tumor and not a recurrence of a previous tumor -- all good news for Eila! 

We will continue with her weekly chemo treatments and plan to image it again at 6 weeks -- the surgeon would like to see the 6 week images before making plans for surgery.  But now, we are very happy with this news and hope that it will get much, much smaller so that the surgeon can preserve as much of Eila's right kidney as possible.

A Whole Hand

From Family2015

Today Eila turns 5, a whole hand.  Although it breaks our hearts to be celebrating this milestone in the midst of another battle with cancer, her courage and strength couldn't be matched by many 10x her age.  She is our brave, strong fighter.

From Family2015

Eila is independent, realistic, stubborn, and tells you what she thinks.  But she's also gentle, courageous, kind, and quick to smile and laugh, a laugh that makes you smile and laugh too.  Eila loves life, friends, and family.  She is adventurous and always happy to do something with you; she will try anything once (usually even before kids much older than her are willing to try).

From Family2015

I can't imagine someone handling her situation any better than she does.  She helps keep our world grounded and makes our family complete.  Happy 5th birthday, Eila, we love you!

From Family2015

Tumor 3, week 2

Although today was Eila's third chemo appointment, she was able to go into preschool this morning because it was late in the day.  She must have explained to her friends that she was going to be using her port today -- from the beginning, we've always explained "Port" to Eila as her personal friend that helps her get the important medicine for cancer.

From May/Jun2015

It was a busy day at the clinic but Eila wasn't bothered as long as the iPad was there.  Any one who needs to spend hours every week at a doctor's office getting toxic drugs should get unlimited use of an iPad (seriously, a big thank you to the friends who helped us realize that).

From May/Jun2015

From May/Jun2015

We met with a different oncologist today because Dr. Thomas is working with the in-patient kids this week (he did stop by though to check in and wish her a happy birthday -- gotta love Dr. Thomas).  It was kind of nice and reassuring to get a new perspective.  Eila was happy to get to tell everyone that she would be turning 5 tomorrow, and her nurses gave her a birthday gift.  She only received Vincristine again today, so hopefully she'll have a better week ahead of her (next week is all 3 nasty ones at once again).

Meredith, Thurston, and Marie stopped by with birthday presents, balloons, and treats to help make today fun.  Thank you!

From May/Jun2015

And you may notice that Eila's sporting her fun hat from the fall festival.  The side effects from the first doses of chemo started to take affect this weekend and I would guess at least 50% of her hair has fallen out.  She's taking it well so far (Joel says far better than him).  Her attitude is truly amazing -- she tells us it's just hair and it will grow back, but with the summer sun coming I think she'll need a few more hats.

Tumor 3, week 1

From May/Jun2015

Yesterday was pajama day at preschool, but it was also day 2 of chemo for Eila.  She decided that she could still have pajama day at the doctors' office.  The visit was relatively uneventful.  Dr. Thomas was out of town last week, so we had several questions to go over with him this week which extended our stay a little longer.  But chemo was only Vincristine (this one doesn't cause nausea so we have more time to decide what other drugs to add to decrease that for her) and using her port went very smoothly (Eila even admitted that it didn't hurt to get the poke).  We left thinking all was well and maybe Eila would be able to go into daycare for the morning today to see her friends again.

But then after dinner, Eila laid down on the sofa and said she didn't feel well.  We checked her temperature, it was 101.6 (now that she has a port again, she needs to go to the emergency room any time her temperature is 100.6 or higher).  So, only 7 days into this new adventure, we were off to the ER.  They took blood, gave her tylenol and anti-biotics, and took chest x-rays (Eila's had a cough for a little over a week).    

From May/Jun2015

The tylenol helped her start feeling better (as did watching the iPad).  After an hour or so, the doctor came in and said that the x-ray showed a little spot -- Joel said his heart dropped at that moment and I took a deep breathe -- of pneumonia in her lungs.  It's surprising just how stressful a "little ER visit" can be, and we've only just begun.  Her blood counts were still high, so she was able to come home with us.  She's on anti-biotics today and starting to feel better.

Pre-K graduation

From May/Jun2015

We don't know what the summer has in store for us yet, but Eila's preschool/daycare made sure that Eila would not have to miss her graduation because of chemo.  They moved their ceremony up 2 weeks so that Eila could go.  It was a really fun evening, and all the kids were so excited and proud.

From May/Jun2015

Each child received a special award, Eila got the award for the most brave member of the class.

From May/Jun2015

From May/Jun2015

And the night (and post) wouldn't be complete without a picture with her beloved teacher Ms. Ati.

From May/Jun2015

Kindergarten here we come (although, more than likely, with a slightly delayed start) ...

Chemo kitty

Just after Eila's third tumor was discovered, I got an email about an offer from the American Childhood Cancer Organization (ACCO) for kids undergoing cancer treatments.  Knowing that Eila would have more chemo treatments ahead of her, and realizing that she doesn't actually remember ever doing this before, I requested one.  It arrived today.  They call it "Cozy the Port-a-Cat", but we call it "Chemo kitty"...

From May/Jun2015

From May/Jun2015

It also came with its own medical bag full of supplies, and Eila loves it.  Now she and her kitty can wear matching doctor masks and she can use it to help understand and explain what's happening to her.  The first half of week was rough, Eila wasn't feeling well Monday night, Tuesday or Wednesday (we'll need to adjust her nausea medicine before the next cycle), so this was a very welcome treat to get in the mail.

From May/Jun2015

Day 1, Week 0

Although it's been 3 weeks since we discovered Eila's new tumor, today was week 0 of her new treatment plan.  It was a long and busy day at Doernbecher's, starting with a port placement surgery and ending with chemo.  We have been through all of this before, but each time is still a bit different.  This time was different because of the challenges that come with a third round of cancer and because Eila is now nearly 5 and can interact with us so much more than when we did this before.

Over the weekend Eila wanted to talk about her Monday appointments.  She really wants to understand what is going on.  She asks me daily, "Do you know anything new today, Mom?"  She asks questions about what we've been talking about with the doctors and what's going to happen next.  And she has opinions, like hoping her port will be in the same place as before and not getting chemo in her port on the first day because it needs time to rest.

It was interesting, and a bit amusing, to see the difference in her age during pre-op.  Eila interacted with the doctors that came in to explain the procedure.  She was given versed, which she has gotten before, to help relax her before surgery.  She told us that it tastes bad.  Then, about 20 minutes later, she was amazed by Joel's two mouths and kept asking how he got "2 mouth-es". 

From May/Jun2015

And she thought it was strange to have a "fat tongue".

From May/Jun2015

But she was calm and relaxed when we left her at the door to the OR.  Surgery took a little more than an hour, and the surgeon said everything went well.  Her third port-a-cath was placed on her right side instead of her left, but it looks like the 2 scars will meet in the middle.  She wasn't in recovery long before they came to get us, and she did pretty well waking up.  She wanted Mama and a blueberry muffin.  Luckily she had requested the muffin earlier in the morning, so we got her one at Starbucks as soon as she went into surgery (thank God for the Starbucks in the hospital lobby).

From May/Jun2015

After surgery she was sad but not hysterical.  She ate her muffin and asked to go home.  Eventually we moved to the pre-op space again and watch some cartoons for a distraction.  Meredith and Marie stopped by with lunch (thank you so much!) and more distractions for Eila.  It was much easier to gauge how Eila was recovering this time since she can explain herself so much more.  We eventually made our way up to the 10th floor for her chemo appointment.

With Eila's second tumor, she had surgery and chemo on the same day.  The chemo went well that day, but the de-access (taking the needle out of her port when chemo was finished) was incredibly traumatic and one of my biggest regrets.  So with this surgery we didn't access the port and planned to do chemo through an iv.  Her surgical iv wasn't giving blood, so Eila had to get a second iv placed.  There were a few tears but overall it went well, and she got her wish (and mine) that her port wasn't used today.

From May/Jun2015

She got all 3 drugs today: vincristine, actinomycin D, and doxorubicin (VAD).  It took awhile, but snacking and watching Netflix on the iPad helped to pass the time.  There were no issues and we were all happy when it was finally time to go home.  She's never gotten all 3 drugs at once before, so we'll see what the week has in store for us.  She goes back next Monday for her second chemo treatment.

Thank you all so much for your thoughts, prayers, messages, text, food, and kindness.  We are truly blessed to have such a supportive community around us, and it means so much to know that there are people near and far cheer Eila on as she fights through this again.

Enchanted Forest

For years we have driven past Enchanted Forest on I-5, but never stopped.  Then this past winter the girls started asking about going to it.  We had agreed we would go this summer, but this weekend decided we should move those plans up.  They loved it!

From May/Jun2015

Our girls are BIG fans of fairy tales, and loved the fairy tale lane that leads you into the kiddy ride area.  Their favorite was the crooked house,

From May/Jun2015

and the old woman who lived in a shoe slide.

From May/Jun2015

They decided to try the haunted house ...

From May/Jun2015

but Eila promptly returned :)  Surprisingly, Annikka was very interested in it, so she continued on alone.  Eila was so impressed with her bravery (as were we), and has asked to hear about what she saw inside over and over again.
They rode on all the kiddy rides, and most of the adult rides too.  By far their favorite was the Frog Hopper.

From May/Jun2015

They would run from the exit back to the entrance line over and over again.  Luckily it wasn't a busy day so they were able to ride it more than a dozen times.  It was a really fun day together, full of laughs and smiles.

From May/Jun2015

Starting a plan

Eila's oncologist, Dr. Thomas, has gotten responses from the other hospitals and doctors we reached out to and luckily there wasn't too much disagreement between them.  The doctors from Memorial Sloan Kettering and Boston Childrens would both treat Eila's third tumor as a new tumor, not as a recurrent tumor.  This is mostly good news.  If it's a new independent tumor that has not survived the past chemo treatments, then we don't need to change the drugs and introduce new, more toxic options - that's good.  However, that could also mean that Eila's kidneys are going to continue to make mistakes that produce tumors, so this wouldn't be her last time in this situation - that's not good.

The Wilm's tumor expert from Children's National agreed that it was reasonable to think that this third tumor is a new growth, but would still prefer hedging his bets a little on the recurrence issue.  If we decide to use the same chemo drugs that she received with the second tumor, he recommended changing the delivery and dosage slightly (using a protocol that is just slightly more aggressive).  The doctors from St. Jude's were alone in deciding to treat this third tumor as a recurrence and recommended a MUCH more aggressive treatment protocol using kidney-toxic drugs.

So that leaves us with a decision: new tumor or returning tumor ...  We've decided to start with the new tumor approach, but with the change of timing of the chemo drugs.  This third tumor was found at Eila's 2 year check-up, 2 years seems like a long time to be tumor-free, so Joel & I have wondered from the beginning about the origins of this tumor.  Then from our conversation with Dr. Ehrlich, we learned that other kids have continued to develop numerous kidney tumors even though they don't have any of the known genetic markers for Wilm's.  But there's no way to actually know the answer to this question, there's no test that can be done even after the tumor has been removed.

So Eila is having a port placement surgery and starting chemo on Monday.  She'll get the same 3 drugs she got for tumor #2, but we are following a different protocol with them (it's a protocol that is more commonly used for bilateral Wilm's tumor).  We will try this for a few weeks and then get new images of the tumor to see if it's shrunk.  If it's smaller, we move ahead towards surgery and more chemo.  If it's the same size or larger, we'll have to change the chemo drugs she's getting to something stronger and check it again.

Right now it feels like a good idea to start with the less aggressive drugs to see if the tumor will respond.  This will allow us to be a little gentler on her remaining kidney, since retaining kidney function is also one of our top priorities.  But we're still scared, we don't want to be wasting time but we don't want to have to put her poor little body through any more hell than is necessary.  I'm sure there won't be much sleeping at our house the night before her next imaging.

Tomorrow she'll be at the hospital again for a meeting with nephrology and a vascular ultrasound - surgery needs to check her veins and arteries before placing her new port.  We are so thankful for everyone who has offered help and advice as we work this out.  We are so grateful for all the doctors that have taken the time to think about her case.  And thanks again for keeping Eila in your thoughts and prayers, there's still lots ahead for her.

Monday Update

We had a fun weekend (took family photos, Dana ran in a 5K run for cancer survivorship, and Eila's birthday party!!!!).  Eila was still wearing her birthday crown as we drove up to Portland to meet with Dr. Thomas.

From May/Jun2015

Unfortunately none of the three outside institutions we've reached out to (Memorial Sloan Kettering, Dana Farber, and St. Jude's) have given us their second opinions, so we're still in a holding pattern.  We still met and asked more questions about possible paths forward, and we told him about our conversation with Dr. Ehrlich.  We should receive the second opinions in the next couple days, and we will wait to see what those say before deciding on what to do.   Unlike Eila's previous tumors, the path forward is not clear.  We may have some tough choices to make and we are hoping that the second opinions will clarify matters.  But they may not.

No matter what, Eila will have to undergo chemotherapy again.  Dr. Thomas walked us through Eila's most likely protocol.  Unlike her last two treatments, when we essentially had one session per week, this time we are also going to have several three and five day sessions because of introducing two new drugs (Cyclophosphamide and Etoposide).  The whole cocktail is going to be much stronger and much more toxic, and these new drugs have scary side effects.  They could affect Eila's fertility, and they will increase Eila's risk of later cancers.  Scary and depressing, but what can we do?

After our meeting, Eila underwent a CT scan of her lungs.  The lungs are the most common place for Wilm's Tumor it migrate (which is why Eila gets a chest x-ray at every post-chemo follow-up appointment), so it was important to make sure everything is clean there before we decide on a treatment plan.  We got the scan, and went home.

From May/Jun2015

Tonight Dr. Thomas called to tell us that there is a small 3mm nodule on Eila's lung.  He thinks it is probably an inflammatory nodule from an infection and not cancer, but neither he nor the radiologist can say conclusively.  The only way to know for sure would be to remove it and test it, but he isn't recommending we do that at this time.  Instead, it sounds like we will check back in about a month to see if it has changed after starting chemo and then act accordingly.  If it's an inflammatory nodule, it will go away on its own (we all get them, but no one is looking that closely at our lungs); if it's a tumor, chemo may cause it to go away... 

Thanks to everyone for your thoughts, messages, calls, and texts.  We love that stuff.

Early birthday

From May/Jun2015

Eila's 5th birthday is at the end of May, but we decided to celebrate early.  As anyone with small children knows birthdays are a BIG deal, so with lots of help from a couple of wonderful pre-school moms (thanks Holy & Laura!), Eila had an incredibly fun gymnastics birthday party while she's still feel well.  And everyone enjoyed the princess castle cake made by our neighborhood friends, Chris & Kristin.

From May/Jun2015

From May/Jun2015

We were so happy that many of her friends (and her teachers) were able to come on relatively short notice.  She had so much fun that afternoon and didn't want it to end.  I don't think that Eila really understands why we had her party so early, but it meant so much to Joel and me to let her simply enjoy turning 5. 

From May/Jun2015

From May/Jun2015

We will celebrate again on May 27th, but really can't say thank you enough to everyone who helped make her 5th birthday memorable in only good ways.  We love you all and appreciate your help and support!

A glimmer of hope

On Thursday, Joel and I were able to talk with Dr. Peter Ehrlich.  Dr. Ehrlich is a surgeon who is the chair of the Children's Oncology Group (COG) bilateral Wilm's tumor study.  It was so incredibly helpful to talk to Dr. Ehrlich.  He said that he has seen other kids like Eila, who seem to just have a predisposition to developing kidney tumors.  It is so nice to hear from an expert with extensive Wilm's tumor experience that she may be rare but she's not unique (I don't think anyone with cancer wants to be unique).  He will look at Eila's scans next week but was optimistic and encouraging about surgery options.  He emphasized the importance of doing all we can to still save as much kidney as possible because the benefits of keeping her "native" kidney outweighs the risk of leaving tissue that could develop another tumor.  Although he can make no promises, he said he has had patients who have had multiple tumors and resections, but have still managed to make it into their teens before getting to advanced kidney disease.  So while we feel frustrated by it, it does seem to mean that we don't need a lot of interactions with nephrology yet -- although we are still working on getting her kidney function tested more thoroughly.  And we're a little more ready for our next meeting on Monday.  Thank you all so much for your kind words and your prayers for Eila.