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.
Friday, May 29, 2015
Wednesday, May 27, 2015
A Whole Hand
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| 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.
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| 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).
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| 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!
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| From Family2015 |
Tuesday, May 26, 2015
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.
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).
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!
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.
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| 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).
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| From May/Jun2015 |
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| 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!
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| 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.
Tuesday, May 19, 2015
Tumor 3, week 1
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| 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).
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| 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.
Friday, May 15, 2015
Pre-K graduation
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| 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.
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| From May/Jun2015 |
Each child received a special award, Eila got the award for the most brave member of the class.
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| From May/Jun2015 |
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| From May/Jun2015 |
And the night (and post) wouldn't be complete without a picture with her beloved teacher Ms. Ati.
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| From May/Jun2015 |
Kindergarten here we come (although, more than likely, with a slightly delayed start) ...
Thursday, May 14, 2015
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"...
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.
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| From May/Jun2015 |
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| 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.
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| From May/Jun2015 |
Monday, May 11, 2015
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".
And she thought it was strange to have a "fat tongue".
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).
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.
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.
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".
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| From May/Jun2015 |
And she thought it was strange to have a "fat tongue".
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| 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).
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| 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.
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| 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.
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