1/2 Way There

Today was Ella's 7th dose of chemo out of a total of 14 doses she'll receive. So it is her 1/2 way mark for # of doses but not in our timeline. In another month they begin to give her 2 weeks off between chemo doses.
We also had an ultrasound and X-ray to check for cancer. Both were clear. Ella was able to admit tonight that she was nervous during the ultrasound that she would see "colors" on the screen and that the ickiness would be back. She apparently thought that pre-surgery when they did an ultrasound to see if the cancer had spread into her blood vessels (praise God it hadn't!) that the colors of the blood flow on the screen were the tumor. I'm constantly floored by how much our two kids have gone through so far in their short lives compared to the cushy life I have led. Ella asked me the other day "So you didn't go through chemo when you were a kid?" And "Daddy, did you have chemo when you were little?"

The big excitement of this week was the visit on Monday night from the Make a Wish foundation volunteers. It is such a wonderful organization and we are so excited to fulfill Ella's wish of going to Disney World and meeting the princesses.

Happy 40th anniversary Mom & Dad! Our original plan had been to be in MA this past week celebrating my parents anniversary but obviously that plan changed. The picture above was taken when my parents were visiting us this summer, a week before we found Ella's tumor. I know that they want to be here with us so badly and were ready to fly back the moment they got the news. But, I have asked them to stay home because I fear them bringing east coast and travel germs to us in this crazy flu season.

Off of the path near our house there is a natural circle of trees that make a great picnic spot. Ella and I agree that if we were fairies we would totally live there.


If it's 10am or 1pm Bini falls asleep, no matter where we are.

Last week Greg had vacation and some of our friends let us use their cabin up in Glacier, about a 45 min. from our house. There was no TV, internet or cell reception so we really felt like we got away from it all.
The cabin was full of books, which Ella loved. She was introduced to Stewart Little and they even had a Magic Tree House mystery book (her favorite series.)


Obviously a serious conversation. Probably Ella saying "Biniyam, it's not funny" he smiles and coos at everything she says which can be frustrating to her when she doesn't think the conversation warrants smiles. Another overheard conversation was "No Biniyam, I really don't think I want to touch a stingray."
One of our favorite paths along the river in Glacier.




As you can see we were not "roughing it"

A smile for Ella

Ella started her "Beads of Courage" necklace. These are beads provided for kids going through chemo. Each bead represents a test, treatment or challenge overcome. Seattle Children's doesn't have the Beads of Courage program so Auntie Faye and Nana got busy & contacted the program so that Ella can receive the beads through the mail. Ella looks forward to adding new beads and for each poke etc. & in the ER Thursday we were able to talk about what color beads she would get (magenta for ER visits, black are port access etc.)

This week Ella's chemo dose had to be decreased because she is having some neuropathy of her vocal chords. Her voice had softened and sounded different. They don't want it to get worse and cause any swallowing problems/ aspiration risk. Since the decreased dose her voice is better but she does cough sometimes when eating or drinking.

Fever and ER

Just a quick update on Ella. She got a high fever yesterday evening and we had to bring her into the ER. We called the local hospital ER to make sure that if we brought her in they could get her right into a room. They said they were full and the waiting room was full so we would probably have to sit in the waiting room with all the germs. We then decided to drive down to Children's where they escorted us directly back to a special ER room where everyone gowned and gloved just to see her. They had to access her port and drew blood cultures and other labs. Her labs showed that her white blood cells and some other cells had increased dramatically since yesterday- but this is a good thing- it means her body is doing what it should to fight whatever it needed to fight. They swabbed for Flu (that was no fun!) and decided to send us home. Saying that since she looked good and the hospital is full of germs that they would rather have her at home. I guess I'd been mistaken in thinking any fever would keep us there for 4 days, apparently that is only if her labs aren't good or if she looks sick. We didn't get home until after 1am. When we got home we were met by a UPS box from Ella's wonderful old Atlanta playgroup. It just brought tears to my eyes because Ella had been asking during her time in the ER if we had anything special for her (prize) and I didn't. And then a box full of gifts were provided for us in perfect timing. Thank you Atlanta ladies!

Today Ella is fever free, feeling good and busy playing doctor to Summit, I hear his temperature is a little high (and then in a whisper she tells me she's doesn't really know, she's just pretending.) We should get a call today from the Oncology fellow letting us know the results of Ella's flu swab. We are praying we can all stay flu free this season as this year Ella getting the flu is very scary to us.

Week 5

We're in our 5th week of hibernation, keeping Ella away from germs. If she gets a fever she'll have to go into the hospital for at least 4 days so they can do blood cultures and figure out if the fever is from a cold or from an infection in her port. So to be safe we've just been keeping Ella home or doing things outside. She doesn't seem to mind being home and not playing with friends. We were always on the go this summer so I think staying home to play is a bit of a treat for her, and of course Biniyam is big entertainment. She has received many new coloring books and art kits which she loves. We've rearranged her room so she now has shelves and a little table to hold all her art supplies and activity books/projects. She loves her new "art studio" and we spend hours making paper dolls, stamping, painting etc.
Every day Ella hold music class for Biniyam

Ella teaching us what she learned about ferns this summer in Botany camp.

Ella took these pictures in the car.
sweetest little boy ever!
Biniyam now has 7 teeth!
Ella received a packet of cards and some work from her school and immediately dove into making books.



Ella has been taking piano lessons and this week she began learning her notes. She surprised us by making her own flash cards and correctly told us, Tiki, Ta, Ta ah, Ta ah ah ah.
And look who's sitting up...for a few seconds at least.
Ella had Chemo on Tuesday this week so it would coordinate with a previously scheduled follow up visit with her very nice surgeon. Greg had to work so my sister Deb joined Ella and I at Children's, what a treat. Things went well, although I think Deb seeing port access for the first time may think "really? that was well?!" And Biniyam decided to roll over for the first time while his grandparents were watching him. I have so much video from the last week when he was so close to making it all the way over... alas. He is such a wiggle worm now, grabbing at everything and putting whatever he can find in his mouth. He adores Ella and squeals when he sees her.

98.4%

We got some great news today, the two genetic markers they had tested Ella for came back negative! This means that the 4 year survival statistic has increased from 90% to 98.4% and that we don't need to make any difficult decisions regarding starting Ella on a harsher chemotherapy agent or radiation.

This was chemo week number 4, which means she received both Vincristine and Dactinomycin. (Dactinomycin being the drug she gets once every 3 weeks that causes nausea) The zofran that they gave her before the chemo worked well as she had no post chemo puking on the drive home or overnight. She did wake up 6 hrs after the zofran with major nausea and we gave her more zofran and then again this morning (getting medicine in her still take convincing but soooo much easier than 3 weeks ago when she fought us on it no matter many tricks or sweeteners we tried)

The Vincristine causes her to have some aches and pains, mainly she complains of jaw pain radiating up to her ear and occasionally she'll mention a pain in her arm, fingers or toes. These are usually short lived and will go away once she's done with chemo. The major side effect of constipation and we've been giving her medicine which has been working to prevent too much pain. She does have gas pain which is eased by use a heating pad on her stomach.

Her hair is also starting to thin. We first talked to her about loosing her hair after her 2nd dose of chemo. She cried for a just a few minutes. We talked about wearing wigs like the snow white wig Nana had sent her (she decided this summer to be snow white for Halloween.) Now it's just normal conversation like chemo or feeling icky. She's the one who brings it up and always in a positive light "you know, I'm kind of (pause) happy about loosing my hair, because right now I just look like Cinderella or Aurora but when I loose my hair and wear wigs I can be like Ariel or Belle... " She is at a good age for wearing wigs because when she dresses up she believe she really looks like a princess (or a dog, etc)

She did great yesterday with accessing and removing the needle from her port, tears but no fighting and not as prolonged resistance to getting into the right position. The big drama of her clinic appointment was getting the flu shot. More anticipatory anxiety than tears from receiving the shot.

Our friend Brandon created this game board for Ella it goes on our refrigerator and she has a magnet of her face that she can move along to see how far she is on her chemo "road map." She was so excited when she first saw the game and realized that chemo won't be going on for as long as she had anticipated.

And here she is with her post chemo present from the du Ruyter family, Wow! Thank you!

A Good Week

It's been a good week. I think we're finding our grove in our "new norm." Ella has gained back some weight and her eyes are no longer sunken. She also hasn't had any temper tantrums this week. We were having many, over ridiculous things, since being home from the hospital. I'm sure much of it was due to her losing control and also a lack of sleep- she's still getting up multiple times a night.Ella and Bini being silly together
Bini makes the greatest faces when trying a new food for the first time.
Saturday we celebrated Pubah's birthday.

Sunday we headed out to Deception pass. It was an extremely windy, we had a great time flying our kite.


Monday we went up to the Vancouver Zoo with Mimi and Pubah. A big day for Biniyam, his first time in Canada, first time at a zoo and first train ride.

The black bear bus is one of our favorite parts of the zoo and they were very active on Monday.

3rd time's the charm

Ella had her 3rd dose of Chemo yesterday down at Seattle Children's. The whole process went so much smother than last week, thank you everyone for your prayers! Many tears were shed by Ella during the accessing and then the removal of the needle from her port, but it was nothing like the thrashing and kicking of previous weeks. I also felt better prepared in making sure we all had a good breakfast, a lunch to eat in the car, plenty of snacks, drinks, entertainment and a present for Ella once her port was accessed.
We are also using Ella's love for TV to our advantage and let her know that if she didn't fight the phlebotomist or nurses than she could watch as much TV as she wants the day after chemo. (between the hrs of 8-6, with a 2 hr "rest time") Continuing to limit her TV watching on other days makes this a big incentive for her to cooperate and not hate Chemo so much.

We are very grateful for my in-laws who volunteered to watch Biniyam for the day so he wouldn't have to sit for 4 hrs in his car seat. And, when we returned home they insisted that they continue watching both the kids so that Greg and I could both join our friends for an Octoberfest dinner.