12 down

We switched Ella's chemo day to Tuesday this week so that she'd be recovered and ready to eat birthday cake for her big day on Thursday. It's a good thing we did because this round made her very nauseous and sick, many times yesterday and some nausea today relieved by the Zofran.

She also feels like she has to use the bathroom at least every 20 minutes (but thankfully only about once during the night), we assume this is caused by the Vincristine affecting the nerves to her bladder somehow. She doesn't have a UTI, they checked yesterday just to be sure. The other side effect she's learning to live with is foot drop and loss of deep-tendon reflex (her leg doesn't jump when they hit her under the knee.) She can no longer walk on her heels and her feet just kind of slap down when she walks. When this started about a month ago she was falling a lot, but I think she's getting better at her new gait. They tell us she will recover fully once chemo is done.

This week was her 12th dose, that means in 3 weeks we get her 13th and (hopefully) final dose of chemo!!! 3 weeks after that we will go to the clinic for blood work, chest x-ray and ultrasound. If all looks good they will schedule Ella's surgery for port removal (this will be an outpatient surgery.) We will continue then to have x-rays and ultrasounds every 3 month for a year then every 6 months for a few years.

Merry Christmas

Ella all ready to deliver Christmas cookies to our neighbors.
Christmas Eve Day we made our gingerbread castle, such fun! On Christmas eve we braved taking Ella into a crowd and went to the Christmas eve service at our church as a family. Ella sang 2 songs with the other children at the front of the church which was so wonderful to see. It also amazed me how she hasn't seen her friends there for almost 5 months but kids just pick up as if no time has passed, no discussion needed, they were just off running around and pretending to be reindeer.
Ella's showing off her favorite gift, a new Magic Tree House book featuring a unicorn!

Christmas morning



Bini even got into opening gifts, although he often was most interested in trying to eat the paper.

A heart of Giving

I was talking to Ella about a family in town who is trying to raise money to adopt 3 siblings from Africa, just telling her some of the ideas that we had on ways to help them raise funds. Ella disappeared for a little while and then she returned announcing "I have an idea!" she held in front of her a basket full of change from her piggy bank. Yeah, I burst into tears.

December 2009

Ella and I had such a wonderful time today making and decorating Christmas cookies. We made 5 different kinds. Biniyam is an amazing sleeper so all the cookie making was done during his 2 hr morning nap and 3 hr afternoon nap. Tomorrow we'll bring some of the cookies around to our neighbors.
Here are some other pictures taken this month.
Decorating for Christmas



Outside with Lollipop.



The first snow of the season came while the kids were spending the night at my in-laws. Ella didn't have her snow pants with her but that didn't stop her from making snow angels.


Ella is really into making gifts for everyone this year. She spends so much time in her room working on secret cards/books/artwork and then wrapping them up for us. Here she is making dog biscuits for Summit.


rest time with Summit
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This is the song Ella made up from her advent calendar.

He's scrumptious!

November Pictures

Bini and Summit have become good friends.
Out for a fall walk, Bini fell asleep in Greg's arms.


For Thanksgiving Ella made us all cards and was very excited to hand them out.

Ella found this in her Big Backyard magazine and decided we should make it.

I can't figure out why these pictures won't rotate but if you tip your head to the left they're pretty cute shots.

These cheeks! I love them, I can't help but constantly kiss them! And he's starting to get me back by covering my face with sloppy baby kisses. ( I love it!)

Feeding the ducks at Mimi and Pubah's
Bini slept through Thanksgiving dinner but when he awoke we were sure he got plenty of delicious food.

Wishing today were tomorrow

It's been a long time since I wished a day would just be over. But, yesterday I totally agreed with Ella's repeated cry that "I don't want today to be today, I want today to be tomorrow!" For me the angst started Saturday night when Ella awoke and threw up multiple times for no apparent reason. The fact that she was never really sick prior to diagnosis (the only medical issue she'd ever had was one ear infection) leaves us forever unsure of what is going on in her little body. Yesterday, Wednesday, we were scheduled for chemo as well as an ultrasound and x-ray to check for recurrence.

We're told recurrence is unlikely but we are dealing with the unlikely just in her having this tumor (less than 500 are diagnosed a year in the US) and why would they check if they occasionally didn't find more cancer.

So yesterday wasn't fun, but as always we are aware it could have been much worse! Ultrasound, x-ray and blood work all looked good (praise God!) Ella received both types of chemo and although she had some nausea last night she's been fine today. She also had to get another nasty flu swab to clear her from isolation when we are in the clinic.

Recently her two passions have been playing the game Sequence (which I think is fun too) and reading Magic Tree House books (or listening to them on CD.)

Here is some wisdom she's gained in her reading and has been quoting.

"If at first you don't succeed, try, try again"

"hold on to the good memories and let the bad ones go"

"today is a difficult day, tomorrow will be better" (from Lilly's purple plastic purse)

another thing she likes to say is "the sooner you do it, the sooner it's done"

Our little girl is learning a lot about life durning this time and I couldn't be more pleased with the outlook she's chosen.

Wishing on a star

Tonight Ella wished on a star that every child would have a home. I can not think of a more perfect wish myself.

We are so Grateful

The fist day after Ella's diagnosis is a bit hazy to me but one thing I remember asking Greg over and over what "What do we know about God?" Because that is all we had to stand on. "The solid rock on which I stand, all other ground is sinking sand, all other ground is sinking sand" That song still brings tears to my eyes because that is exactly how I felt that day. So what do we know about God I'd ask, and then repeat to myself what I know "He is slow to anger and abounding in love, He is merciful, He is just, He works all things for good for those who love Him and are called according to His purposes." And there formed my perspective. She had the tumor because we live in a fallen and broken world where people get sick, even children. But God loves us and we are blessed!
Here are some of the ways we feel blessed this year.
*Ella's had a Wilm's tumor rather than any other type of childhood cancer.
*We live in a country where from tumor discovery to removal was less than 36 hrs.
*God's perfect timing in that Ella's tumor was not found until AFTER Biniyam was home.
*Biniyam, our precious baby boy, who is so peaceful and happy. He is an absolute joy!
*Ella's continued positive outlook despite all she's going through.
*For Greg, my perfect match and an amazing father.
*Family and Friends, we feel overwhelmingly supported and loved!
*Our church family who have lifted us up in prayer and provided weekly post chemo gifts for Ella, tonight she told me "I really love that I get gifts after chemo because then instead of thinking about chemo I'm thinking about 'I wonder what my gift is going to be?'"
*Good health insurance! Seriously!
* For Greg's job, which continued to pay him through 4 unplanned weeks off this summer.
* For running water and electricity, for a warm house and a fridge full of food
* That we live in a county where we can worship freely

The Home Stretch

We just finished week 10 of chemo and now we've entered the home stretch where we no longer have chemo every week!!! We get to go three full weeks between doses, so every 3rd Wednesday we'll be heading down to Seattle. I am elated! Ella is doing awesome today. She received the chemo yesterday which usually keeps her nauseated and refusing to eat for 2 days. Well, yesterday she snacked a lot on the drive home and then ate pot roast and mango for dinner. This morning she's having spaghetti for breakfast! She also is chatty and clever/funny, this is a good sign that she's feeling well. I've realized that I can almost gage her temperature by her personality. "Mom, are you sure you want me drinking fluids? You don't think fluids will give me the flu?"= she's feeling alright.

She also finally received her H1N1 vaccine yesterday. Greg and I have been asking her Dr's each week if it was available, referring to it as H1N1 and hoping Ella wouldn't realize what we were talking about. Then one night she asked us "Why do some people call the swine flu 'H1N1'?"- no tricking this girl. So at the news that they had the shot and they wanted Ella to get it she burst into tears. As the nurses (yes, it took 2 and me to hold her down) were giving it she let out the loudest scream I have ever heard. Then we said "Ella, it's over, it's all done" She said very sternly "No it's not!" me- "yes it is, why don't you think it's done?" Ella- "Because it didn't hurt." Apparently the scream was simply in outrage to what was being done.

I have to say that other than the fact that she often makes a simple procedure more difficult by fighting, I am so glad that her personality hasn't changed. I'm glad she hasn't given up fighting for what she wants. She lets adult strangers know that what they are doing is not alright with her. She is one strong little woman! She did win one fight yesterday. They wanted to do another flu swab so they could clear her from isolation. She said she didn't want it and I supported her decision. I'm glad we were able to give her that little victory.

Ella's fevers

* Ella has a temperature chart in her Caring for Your Child with Cancer binder which tells us when to continue checking her temp every 30-60 min. and when to Call Now! Around Oct 30th her temp started creeping into the "check every 30-60 min area" for the first time since we've been on this road (we routinely check her temp every morning and evening per Dr's orders) Checking and waiting for something to happen is not easy on a mother's heart.

* On Oct 31st Greg was oncall and woke in the night with fever and chills. We decided to have him sleep at a hotel or at his parents until Wed when he'd been fever free for 24hrs. He then reentered the house wearing a mask for the short time Ella and I were home before leaving to go to Chemo (Greg stayed home with Bini, as sick people should not hang out in Heme/Onc clinics) On Wed night Ella spiked a fever and we ended up in the ER, but Greg wore a mask. On Thursday he gave himself a rapid strep test which came back positive and he again stayed at his parents until he'd been on antibiotics for over 24hrs.

* On Wed Nov 4th Ella and I went to chemo (wore masks while in the clinic) but her Dr's weren't concerned about her low grade temps. Less than an hr after getting home Ella had a fever of 103.2 and we were off to the ER. Thankfully this time we were able to go to the hospital 5 minutes from our house and they took us straight back to a private room. The nurse we had had worked at Children's up to a few months ago and was great at accessing Ella's port and being patient with a screaming, feisty child (The fever work up in the ER consists of accessing Ella's port for labs and blood cultures, chest X-ray, and a flu swab. It takes at least 2 adults to hold her down for anything invasive). Ella's flu swab on Wed came back negative as did everything else. They gave her a dose of antibiotics and monitored her blood pressure for an hour to make sure her it didn't plummet as apparently could happen if she had an infection in her blood.

* Sunday Nov 8th Ella's fever at bed time was the call now temp (101). But, knowing that if I called they would make us go to the ER. I rechecked her temp ever 15 min for 2 hrs before it crept up to 101.3 and I made the call that sent us to the ER again. (When we got to the ER her temp was only 100.4 so I called the Oncology fellow at children's again to see if we could just go home, but he told us to stay for the work up. With every tear from Ella I felt so bad thinking we didn't really need to be there.) Same fever work up but this time the flu swab came back positive for influenza A, H1N1. And her temp climbed to 102 while we were in the ER. Greg was on call on that night and stuck in the OR but when cases finished he was able to join us in the ER. The ER dr wanted to admit us but thankfully the Oncologist said we could go home.

* Ella has no symptoms of the flu, no cold symptoms, just fevers. Praise God!

* We started her on Tamiflu which gave her massive GI upset and a rash all over her body. We have therefore stopped the Tamiflu after day 5 instead of going with the full 10 day course given to high risk kids.

* This Wed we went to Chemo and Ella was not looking her best. She'd slept 14 hrs the night before and still fell asleep on my lap while waiting for the Dr. We asked them to give her IV fluids (all the sleeping=no drinking) and to do blood cultures again so we wouldn't end up back in the ER that night. They did, and her temp did spike before leaving the clinic.

* Thankfully she hasn't had any fevers since Wed. Even though they know she'll have fevers with the flu we would still need to get blood cultures done to make sure she doesn't have an infection in her port.

* Please pray that she will sleep better as she's been crying out in her sleep the last few night (no fevers) perhaps nightmares?

* We are so grateful to our friends, Craig on Wed and Johannas and Erin on Sunday, who at a moments notice came over to sit with sleeping Biniyam until the wee hours of the night So that we could bring Ella to the ER.

flu

Ella has the flu, H1N1, but seems totally normal. We are Praying she stays that way. I was in the middle of a long blog post but now she's awake and hungry, and when the girl is willing to eat I feed her! And then I'd cuddle her back to sleep, because that's what we are blessed enough to be able to do.

Halloween

The weekend before Halloween Pubah had the idea that we should each carve one part of the pumpkin then cover the part we carved with duck tape so no one else could see it as they carved their part. We ended up with a pretty funny pumpkin.
Ella decided to be a fairy princess instead of Snow White. Biniyam was a frog.
We went trick-or-treating early in Mimi & Pubah's neighborhood and then had a party at their house watching the Wizard of OZ. For the party Mimi told us she'd get pizza, but Ella said she wanted steak and potatoes. So while we ate pizza she ate steak (and shared some with Pubah.)







Ella won the pumpkin decorating contest at Trader Joe's! They gave her a Trader Joe's bag full of goodies. They don't know Ella or what she's going through, her win was purely based on her artwork of a glittery, embellished pumpkin.