Artist's Point

Saturday was my birthday. I went to get a massage in the morning (Thanks Mom, Dad, Faye/Bobby & Deb/Cecil) and then took a long nap. Greg and Ella made me this beautiful butterfly brownie of Ella's design.



Sunday I went to church then Greg went to a cookout (we're taking turns on social gatherings, keeping Ella at home.) and then we took a drive up to Artists point on Mt. Baker. This is the first fun outing we've had as a family since our world changed. Sunday was a good day.

2 down 12 to go

Ella had her second dose of Chemo on Wednesday and she's doing well. She is receiving Vincristine every week and Dactinomycin every third week. It's the Dactinomycin that makes her feel lousy.
Accessing Ella's port hasn't gotten any easier. Greg had her on his lap giving her a big bear hug - holding her arms down and her legs by crossing his legs over hers. I had to get her feet because she tries to kick anyone coming near her port. She screams at the top of her lungs and flails about. She completely exhausted herself and us. I am grateful for her strong will and that she has the physical strength to fight, but I pray she can have peace and understand that not fighting makes accessing the port easier. We have been talking about that this week as well as letting her know that it is okay to scream and cry but not okay to kick or hit.
The trip to Seattle for Chemo takes at least 2 hrs each way, the time in the Heme/Onc clinic is about 3 hrs, Wednesdays are long, exhausting days. There is one Oncology trained pediatrician in town with whom we hope to talk with this week about the possibility of him giving Ella her weekly chemo.

Pictures

Stickers!

Ella's first meal in 5 days, all liquids. This is the Care bear who has a port for chemo just like Ella does.
Can you find Ella among all these gifts? This pictures was taken on Sunday, before many, many more gifts arrived in the hospital and at home. Thank you everyone so much!

tats, Thanks Aunt Jackie!

Ella got a visit from two sweet little dogs while at children's (truly an amazing hospital!)
"Rainbow Flash" received a lot of morphine from Ella, she was a very happy bear.
This beautiful quilt was given to us by a quilting guild in Covington, Wa and really brightened up Ella's room!
Home- our happy, sweet boy!
Ella showing off her "shark bite" as Greg likes to call it. I say Princess Ella got scratched by her unicorn's horn. Ella says "Mom, stop teasing everyone! It's the incision from my surgery!"
Giving us her fierce look, Ella shows her 5 1/2 incision as well as her port. The port is located under the skin in her upper right chest, we put a numbing cream on it an hour before it needs to be accessed. Even with the cream accessing the port is still dramatic for Ella, we pretty much have to wrap ourselves completely around her as she fights us with all her strength. They tell us it will get easier, I hope so!

We're Home

Ella got her first dose of chemo today.

There are two medications, they get pushed over just a few minutes. As you can see Ella took it all in stride, just watching Strawberry Shortcake and eating her lunch. The most dramatic part by far for her was getting the tape taken off the port. Tape removal=tears! But by the time we got going home she was feeling nauseated and threw up in the car twice (into a bag we had ready). It's 1 1/2 hrs from the hospital to our house, I sat next to her and she slept on my shoulder most of the way other than getting sick and complaining of nausea and stomach pain. She was clammy and would cry out in her sleep, our poor baby girl! She looked so good this morning, it's hard to see what the chemo does to her. We didn't tell her that it's the chemo making her sick because it would make it so hard to get her to go in weekly for visits. But, she's a smart kid, she'll put it together pretty quickly that she feels good until after going to the hospital. We have a follow up appointment on Thursday so hopefully I can speak with the Child Life Specialists and get some advise as well as speak with the Doctors about how best to use the anti nausea medications we've been given.

What a week!

- We got the final pathology reports today and Ella's Wilm's tumor was a stage 1. It makes no difference in treatment or prognosis but it makes Greg and I feel better knowing it was caught early.

- Ella is going to have her first dose of chemo tomorrow and then we will be able to go home (we hope). Greg was supposed to go back to work tomorrow but a friend was willing to trade days with him.

- The Chemo shouldn't be too harsh on Ella's body, the biggest side effect is constipation. She may loose her hair around week 9 and it won't effect her reproductive organs. She will receive it as an out patient once a week.

- It has been a challenging few days getting Ella to cough and deep breathing (so she doesn't get pneumonia) getting her up and moving so her bowels will get moving too. Each cough, each step, each boost in the bed brought tears a few days ago. Today Ella was climbing out of bed on her own, still is wobbly, but the way she's moving is amazing- I can't imagine an adult showing us their kung fu panda moves 5 days after major abdominal surgery!

- Yesterday getting Ella to eat or take Oxycodone was a challenge today she's doing great.

- She is back to being her normal, funny, loving self!

- The child life specialist brought Ella a care bear with a port in the same place Ella has her port. E hadn't noticed her port until we were at the elevator one day and she saw a little girl getting chemo through her port. Ella mentioned that the girl didn't have her tubes going into her arm and so that opened the door for conversation right there at the elevator about how she gets her medicine through a port, being able to point out Ella's port in her right upper chest. When we got back to the room we showed Ella the care bear and she was very cute playing with it and using the syringes to give the bear pain medicine. She also put band-aids on the bear in all of the places that she herself has band-aids. Today we've advanced to giving the bear chemo.

- We are using the words "cancer, Wilm's tumor, chemotherapy (chemo)" with Ella. She of course doesn't have the same connotations as we do about these words. So the real challenge was getting me to be okay with them. At the beginning of the week I hated being given books called "Caring for your child with Cancer" and that "Make a Wish Foundation" brochure brought me to tears.

- Ella will be eligible for Make a Wish Foundation after she's done with her treatments.

- The Dr that told us the "good news" about Ella's pathology reports on Friday did it in such a bad way that Greg and I both thought she had really bad news for us. She came in with such a sad face and said she had the preliminary reports and she wanted to talk to us about them, then when we said "let's step into the hallway" she said "um, let me go find a more private place" Then when we got into the conference room she said "what were you told" and made Greg go through everything then she said "well the good news is there is no lymph involvement..." and we were just waiting for her to tell us the bad news, but it didn't come.

* Biniyam is just the most awesome baby! A few weeks ago I would have told you I wished he would cry sometimes, It concerned me that he doesn't. Ha! He's a blessing, God knew what we needed an amazingly peaceful baby. And it winds up if I'm not there putting a bottle in his mouth every 3 hrs he does let us know. The other day we got Ella into the chair with many tears, then they needed to look at her epidural and then we were waiting for them to take out the epidural and then they she got a skin tear when they removed the dressing... so I was scootching in front of her for over an hr, holding her, and Greg was occupied with her too. Biniyam was happily playing on the bed, then I looked over and he was asleep, then an hr later I look over and he's playing again. Such an amazing baby! He also has been giggling a lot more this week, something we needed. It's also become clear that he recognizes us as his parents. He gets so adorably excited to see us.

good news

This is Greg here, with my first ever blog post. We expect to get the final pathology report on Sunday, but they seem fairly confident that the lymph nodes are negative and there is "favorable histology". They are testing Ella for two genetic markers, which they will have the results of in about one month. If she is negative for these, which the majority of patients are, her overall 5 year survival rate is 98.4% !!! If she is positive for these, this lowers her overall 5 year survival to 90.5%, so they would offer to enroll her in another study where they would intensify her chemo regimen and possibly add radiation. Today, Ella also got her nasogastric tube, her epidural and her foley catheter out, so she looks like a new woman. Now her main complaint is extreme hunger, and since she has not eaten since Monday, we can definitely sympathize. We hope they will start to give her some ice chips and maybe a popsicle tomorrow. Sometime next week we will begin her chemo. It will consist of 14 treatments of 2 drugs, given over 19 weeks. It will be done on an outpatient basis, so we will get to stay at home in Bellingham, which is wonderful. She will be followed with periodic ultrasounds to make sure the cancer does not recur.

prepared

I feel that God has been preparing me for this. Yes, Monday night I got the rug pulled out from under me, but before that I had a sense that Ella's life was so fragile. It feels a bit wrong admitting this outloud, like acknowledging it is going to jinks us some how, but I feel more at peace now than I have in previous months. So, if I held to the delusion that my thoughts dictated outcome-then my thoughts would bring us to good places.

A few months back I had a horrible dream, vivid, waking me, remembering all the details. I dreamt that Ella was hit by a car when walking across the street. In my dream I was in a second floor window when I looked out on the street and saw her before she crossed the road. I can see the street vividly in my mind, and believe me, whenever I'm somewhere new I peak out the second floor window to make sure it's not the street of my dream. When I got up in the morning I poured my heart out to God. I, through many tears, had to give up my illusion of being in control of Ella's life. I can not be with her always, I can not protect her from all things, but He knows her innermost being and her future. In my mind I picked her up and placed her in his hands, "she is yours God." I knew God was working out control issues in my life but I couldn't fathom how badly I needed those issues to be worked out before the word cancer was uttered. So many times in the last few days, especially the monday night drive to Seattle, being able to pray "she is yours God, I have no control, but YOU do!" brought me great peace.

As well as knowing that for much of this summer I have been desperately been praying against any danger to my daughter, without even realizing it was already inside her. And then 2 weeks ago out of no where she burst into tears "I just don't want to die, ever, I just don't want to!" I don't know where the fear came from, but I just held her and tried to explain she wasn't going to for a long long time and we prayed for her to see her grandchildren. I remember praying to myself as I held her that if there was anything going on with her it would be revealed to us. It has been, the tumor was found before spreading. I have confidence that my baby girl is going to live a mighty life bearing witness to the mercy of our maker.

post op day 1

We had a good day today. Ella's pain is under better control with some increases to her morphine drip. She slept most of the day. We were able to get her up to the chair for about 10 minutes and being the trooper that she is she even wanted to try walking, she only took about 2 steps, but we are so proud of her for trying. Her one kidney is producing beautiful urine, yes, I'm calling urine beautiful! She is running a fever tonight. The pain is preventing her from breathing deeply and she cries when she has to cough, pray that she doesn't get pneumonia.

Today we were also able to talk more about why she had to have an operation and she seems to be doing better with the fact that we brought her here. This was a conversation we had yesterday "mommy, I told you I didn't want to come to the hospital" me- "I know hunny, I wish you didn't have to be here." Ella- " No mommy, you want me to be here and I'm frustrated with you!" As hard as that was to hear, we are grateful that we can now work through those feelings.

Greg and I were able to relax a little bit today, relieved that recovery is under way. We laughed with friends and each other and had a good talk about all we've been processing. Sometimes I get hit by a wave of "life is not normal, what are you doing smiling." But my stress is not going to improve any outcomes, so I will accept the peace I feel and rejoice in the God on whom I am leaning so heavily!

48 hrs in

Ella went to surgery today at 8:30, it was a hard send off, she was crying and repeating " I just don't want to get my belly cut open!" But the ickyness had to come out, so we held it together until she was sedated and in the OR. It was a long surgery, they had told us 2-4 hrs, but being medical professionals we knew they often underestimate OR time so we weren't worried when hr #7 approached, although each time the pager went off with an update my stomach lurched. Being medical professionals also makes us aware of the reality of medical mistakes & complications, praise God we had neither. The surgeon said everything went well, very little blood loss (no need for transfusion.) and the tumor did not rupture while being removed (again, big fear, praise God) The tumor was large 4-5 lbs so separating it from the surrounding tissue took time. They tell us these tumor are always large when found. Ella's guts were all displaced during surgery and she has a very large scar over the right side of her abdomen around towards her back. Unfortunately her epidural does not seem to be working well and

she has intense pain with any movements, they are giving her morphine for this. She has an tube in her nose down to her stomach which suctions out bile, this bothers her throat. They placed a port in her upper chest wall that will be used for chemotherapy. We are glad that they could place this port while she was under anesthesia. We won't find out the pathology reports until Friday or Monday, continued prayer for low grade tumor and good prognosis as well as no lymph node involvement. We've moved rooms 3 times in the last 48hrs, but are now on a surgical floor and I will sleep better knowing she is hooked up to the heart and oxygen monitors.

We have been blessed by the outpouring of love and support. We really have a great community rallying around us. Ella's room is full of balloons, cards and gifts. Greg's aunt brought her motor home over yesterday and made arrangements to have it parked in the hospital parking lot for our use. Greg's parents and the dogs have been staying there and we will take turns sleeping there with Biniyam. She also stalked it with all kinds of food and drinks. Thank you Jackie! My sister lives in Seattle and has been here with us. We have friends who have driven the 1 1/2 hrs from Bellingham to see us, some to stay with relatives "just incase" Ella wants to see her friends, their children. We hope she'll be up to seeing friends soon.

Thank you all for your prayers, love and support. We are blessed.

Update on Ella

I can't even describe how difficult this morning was. Ella had complained of chest pain a few times over the past week and now with the diagnosis of cancer my guts felt retched with the fear that it had metastasized to her lungs. We went for a CT scan mid morning and then waited until late afternoon to hear the great news that her cancer has not spread. From what they can tell it looks isolated to her right kidney. The also were able to tell us it does look like a Wilms Tumor which has a good prognosis. We went for and ultrasound this evening which showed that the tumor had not grown into her renal artery, again praise God! We were told they couldn't fit her into the schedule to operate until friday, but now a slot opened up 8:30 wed morning. Praise God they will get this tumor out of her (as well as remove her right kidney.)

This is copied from an e-mail Greg sent out today

Please pray for guidance over the surgeons, anesthesiologists, and nurses hands and minds tomorrow. We are praying specifically, that there would be no complications during or after surgery, that there would be no evidence of local spread or metastases, and no tumor rupture during manipulation of it. Also praying that the pathology report would come back favorable, specifically, that there were be NO ANAPLASIA, as this means the prognosis is worse. Also praying that Ella goes under and wakes up comfortably. She should have an epidural, and we are praying that it keeps her very numb over the incision after surgery. She will also have a foley catheter and a nasogastric tube, please pray that she tolerates these well. They will possibly also put in a port-a-cath for chemotherapy in her neck, please pray that there are no complications from this as well.

If all goes well tomorrow, she should be in the hospital for 7-10 days, then hopefully home for a few days, then, if all looks good, she may only have to come down here once per week for chemo for 14 weeks. I never thought I would consider 14 weeks of chemo to be a blessing, but here we are.

Our God is bigger than this!

I can't believe I'm making this post. We are in Children's hospital in Seattle. Yesterday was Greg and my 6th wedding anniversary. Greg's parents watched Ella Sunday night so Greg (Bini) and I could go out to dinner and then Monday the plan was to go hiking. It ended up raining as we started to hike so we had a picnic and went to pick Ella up. When we got into cell phone range we got a message from Greg's mom saying Ella had a fever. When we got there she was saying her stomach hurt (she's been saying this off and on since we had the stomach bug a few weeks back, but seem to get over it quickly and is off playing again.) but yesterday she looked different. Lethargic, didn't want to eat even ice cream. She laid out across my lap and I felt her right side of her abdomen, it was more firm than the left. Immediately I got a wave of "we need to bring her to the ER" Greg and I talked and quickly moved to the ER with her, fearing it was her appendix. We waited in the ER for 3 hrs before they brought her back, agreed she was guarding her Right Lower side of her abdomen and arranged an ultrasound. I ran home at this point because my in-laws were there with Biniyam and I know he melts down a bit before going off to sleep for the night. I wanted to put him down to sleep. Greg called, it wasn't Ella's appendix, they found a mass attached to her right kidney. A mass, a mass? cancer? In a daze I moved downstairs and told my in-laws, they gladly spent the night at our house with Biniyam.

I ran around the house throwing some stuff in a bag and went back to the ER, we drove Ella down to Seattle Children's hospital, with her head on my shoulder, praying the entire way. We tried to sleep after getting into a room around 2 am. We have prayed so much, so hard for this child. We have asked everyone we know to pray, please lift Ella up in your prayers! We KNOW that our God is bigger than this mass, bigger than cancer. We know that our God is in charge of this situation. But our hearts hurt, our fear is real, our child so precious!

Catching up

We're doing well. We've been home with Biniyam for just about a month now and he is a peaceful little guy who takes it all in stride. We could not be more in love. He fits so well into our family- even sleeping until 9am, really, how did I get blessed with two late sleepers?!

The first week we were home from Ethiopia was a daze, I was so jet lagged and Biniyam was waking up at 4am- for the day (but considering the 10 hr time change I was just glad he was sleeping at night) Thankfully Greg was on vacation that week so I got some good naps but still ended up with a miserable cold (flu?) which I passed on to Ella. Week #2 Greg went back to work and the kids and I enjoyed the summer, parks, lakes and friends until I got a stomach bug and passed it on to Ella, again the guys stayed healthy. Week #3 my parents visited from MA, we had a wonderful time watching them spoil their grandchildren with love and attention. This week I finally feel like I'm getting my feet under me, all my laundry done and put away, cloth diapering figured out, and mostly Ella time.

Ella, ah Ella, definitely having the most difficult time with the transition to not being the soul attention getter in the house. It took less than 24 hr for her to sigh and say "Sometimes I wish things would just go back to normal" This was said while driving in the car, she didn't think she could look out the window anymore that she had to entertain Bini. "But what if he cries for me?" So week # 1 was convincing Ella she was a big sister, not the parent and she didn't have to be with Biniyam constantly-CONSTANTLY- like if your rocking him to sleep "just checkin on Bini" she'd say as his eyes popped open. Oh it was hard to be patient that week!

Now it's more about sharing attention. I cuddled and read to her for over an hr the other morning while he slept and once he woke up I changed him and leaned over and he's just looking into my eyes and cooing and chatting away for no more than 5 min and Ella was in tears. "I'm just not getting enough mommy time!" That's her key phrase- she throws it down many times a day. So this week has been all about mommy time and thanks to Bini's 1 1/2 to 3 hr naps she even gets lots of individual mommy time.

Ella totally adores Biniyam, she is great with him, singing and entertaining him, reading him books. She made up this rhyme the other day "When Bini's awake he's lots of fun, and when he's asleep he's boring, but when he's kind of in between he's kind of annoying." (yeah, he fusses a bit when he's tired and fighting the sleep) and she's nick named him "Bini the pooh"

We are grateful that she's able to verbalize her frustration with not getting enough attention from us and doesn't take it out on her new brother.

And BINIYAM, he's growing so much! He's gotten 2 teeth this month and has definitely gotten taller and chubbier. He went from having no strength in his legs to hold his own weight to being a champ in the jump-a-roo, from not being able to pick up toys to having great grabbing skills.