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.