Thanks Auntie Cole!

A motivated sleeper!

After not taking a nap today she was amazingly tired around 4:45.  She was determined to sleep.

Snuggabug

First we snuggled....

...and then she slept.

#7

Tuesday was chemo #7 and it was our busiest day yet.

We started at 9:15 headed to CHLA, we checked in at imaging at 11:30 for her ultrasound.  They scanned from 12 to 1 and then we ran for a quick lunch there at the hospital.  She had been npo since the night before and she was hunnnngry.  At 1:30 we checked in at outpatient Tower 5 for chemo.  Our dressing change was the BEST ever such a relief.  We were a bit nervous about the ultrasound as the tech that did the scan, left, talked to the radiologist, came back and scanned some more.  Fine.  Needless to say that was worrisome after our last ultrasound that started it all.  So we did the dressing change and waited for Dr. Tran.  The first words out of his mouth as he walked in the door were, "So the ultrasound looks great".  ?!?!  I wanted to choke that tech and hope that she gets horrendous wrinkles from all the scowling she was doing at Macie's right side.  Curse her.

Anywho, Yay, it looked great.

So after that we talked about increasing her gabapentin and he agreed.  He was very happy with her ability to walk and paddle her feet, no problems there.

He did mention that from the chest x-ray we did the Tuesday before it was apparent that her picc is moving.  Still functional, still in a good spot, but from what he saw, it does look like it will need to be replaced before the end of treatment.  Fine.  If that's our "bad news" for the day, we will take it.

So after talking with Dr. Tran, we went back to the chemo center.  Our chemo was cooked so they first push the zofran, then saline, then vincristine, then flush, then dactinomycin, then saline, then the heparin flush and we were done.

Like a champ, she was out the door.

Panera dinner on the way home and a quick one toy stop at Target for her extreme bravery and smiling face were in order.  A grown adult would not remain so good natured during an 11 hour day, yet she did.  

I wish there was more we could do for her, she is unparalleled. 

Robbie stayed home to take the older girls to their first t ball practice, so I was accompanied by a true chemo professional : My Dad.   My Dad has been a part of the "Chemo Pal" program in Portland for many years.  It is a program where he gets paired with a young kid who has chemo and he shows up with an ipad and toys and books and he is "Mr. Fun" or "Mr. Snuggle" or "Mr. Wagon-puller".  He is whatever that particular kid needs and he is there each time they have chemo through the duration of their treatment.  What a blessing that has been for Rob and I that he has the background that we do not.  We are thankful.

This  picture was taken at Panera on our way home.  We were at about a 10 hour day on the move at this point.....still smiling.

Waiting on Outpatient 5

The awesome ninja tower Macie built while waiting in Imaging for her ultrasound.

We call this outfit business casual.  She is SO DANG CUTE.

156 Macie shirts!!

Loves them.

Ninja Dolls!

Thank you Mom and Corey!  The ninja dolls are perfect.  We are a great team.  She loves them.

Where's Waldo?

Robbie built shelving in the top of his closet.....it turned out to be a little too much fun...

The Flush

Evelyn of course has a picc line.  Each day the picc must be flushed with first saline and then heparin.  We do this every day and will do it every day through out treatment.

Each day when I do it, Evelyn walks me through it and we talk about what it's doing and why and all that good stuff.  She is well versed on what is happening and why.  She knows we shoot all the saline, but only 3ml of the heparin, etc.  Anyway, today for the first time she took me up on my offer to flush her own picc.  We did it together and she was proud of herself.

This was a great way to give her some power in her life.  There are so many things she has to do because she HAS to do them.  But today she had some power in the process and that is always my goal.  Great job Evelyn Macie, you are a pro.  Very proud of you.

The Wonderful Wonder Drug

These two things are both wonderful.

These two things seemingly have nothing in common and DO NOT go together like peanut butter and jelly.

However, this combination has greatly improved Evelyn's quality of life and ours as well....

The drug is called gabapentin, (neurontin), and she takes it three times a day to manage the pain in her legs and hands that she has from the chemotherapy.  The gabapentin is a wonder drug.  However, it tastes atrocious.  She does not fight us to take it, but she needs a minute once I get it out to prepare herself to take it.  I had been giving her the gaba with a small amount of milk, usually chocolate prepared by her and that was working fairly well....until Grandpa came to visit.

and things got A LOT better.

Grandpa's raspberry jam is literally Macie's favorite food on the planet.  Literally.

The day that Grandpa offered her a spoonful of it after she took the gabapentin will go down in history as one of the best days of Macie's life.  The next best day will be the day I gave her the spoon and one spoonful became two or three.  :)

So now Evelyn has her own little container of raspberry jam in the fridge used solely for taking the gaba.  YES.  Super Grandpa to the rescue!!!

What a weekend

This is Evelyn wearing her favorite hat that Grandpa and Grandma got her.  She loves wearing it and its so dang cute.

This is me freaking Macie out when I half think she thought I was gonna bite her finger off.  LOL

And now that church is late, she was in dire need of a nap.  So Grandma and Grandpa took her for a walk this afternoon and out she went.  Perfect little cat nat.

140 Evelyn Macie shirts ordered!!

Love love

Happy

My big girls have started wearing hats.  Allie and Evelyn are the same size so that is awesome.  Addison felt left out last night without one.  They help me make this easier on Evelyn without even knowing it.  Kids, especially, are just inherently good.
And just a shot of my Mom and I that Evelyn took. ♥♥♥

109 Macie shirts and counting.....!

#6

Yep. FASHIONISTA.

My parents are here.  I am elated. My parents are here!

Evelyn Strong

In thinking of ways to support our daughter through her treatment we came up with the idea of these t-shirts. The pricing is set so that there is no profit to us, this is not a fundraiser. We know that she will someday realize the overwhelming support that we recognize now. Please post a picture of you wearing your t-shirt to add to Evelyn's scrapbook. Thank you!! A huge Thank You to our friend - TJ who took the bits and pieces and made them beautiful. This has been posted to Facebook as well....

Gray Version

Black Version

For Addison's Valentine's Day party at school, Robbie and I were both able to go as Rob's parents were here to stay with the little girls.  It was awesome.  Addi was so excited that we were both there.

In honor or Valentine's Day, Addison was able to forgo her uniform and wear Valentine's day clothes.  Here it is!  Looking cute babe!!

Chemo #5

While Gma and Gpa V were here we went to Joanns and got every ninja fabric they had.  And Gma went to work.  We have this top, a pair of ruffle pants and a pair of jammie pants.  Awesome!!!!  Thank you Gma!  Evelyn is a ninja.  We know this.  And ninjas wear zebra print. (Don't ask me how I came up with this, it was a gift from heaven to my brain and it has made a world of difference.)

So here is Evelyn in her ninja clothes and ninja hat.  She also has a ninja clutch purse that goes nearly everywhere with us.  Awesome!  Thank you!!!

Evelyn's chemo

So Evelyn has chemo every Tuesday at CHLA.  Every third treatment is a heavier two drug treatment.  The other 2 we go to the infusion center for.  Basically the infusion center simply pushes chemo.  They draw her blood for labs thru her picc, they change her dressing, push her chemo and send us on our way.  That all told is about a five hour day on 2 east.
Every third is not only a two drug day but also the day we meet with her oncologist.  This is much different.  We go to Outpatient tower 5, sign in, and wait.  Then they take us to another waiting room then they take us back to the curtained area.  They draw her blood for labs and we wait.  Once the blood comes back they order her chemo and we wait. While waiting, we go across the way and wait for her oncologist, who is amazingly punctual, thank you Dr. Tran. Then we go back and they infuse the Zofran and we wait.  Then they push the chemo and we wait. They hep flush her picc, then they change the dressing and we are then done.  It's a different experience for sure.  It's fine, we don't complain but glad that that is our one third. 
Pushing the chemo is not traumatic.  I saline and heparin flush her picc every day so she is used to that.  The bad part of this deal is the dressing change.  She has a tegaderm dressing over her picc line to keep it sterile and under that dressing, which is quite large, her skin is agitated.  It can't breathe and often gets raw.  Part of the dressing change is to clean the area thoroughly with an alcohol swab.  This is the worst few minutes of our week every week.  Although--- last week was a vast improvement over ever before and the makes me happpy.  The skin had healed somewhat. We had the perfect Strawberry shortcake baking game on the ipad to distract and there was minimal screaming.  How sad that I call this a victory.  But it was.  I will post pics from last week next.

I am not to be left alone.

Amber and my parents got here first and then Robbie's parents came and then Nichole came and then Rob's parents came back....With overlap nearly each time.  Now Robbie's parents are leaving tomorrow and my parents won't be here until Monday.  I daresay I am fighting the panic.  Having that extra layer of people to cover the "what if we have to go to CHLA on a moments notice" has been a necessity.  I think we will survive the day and a half, but gosh it's nice they'll be here soon.  Love you all and THANK YOU all.

Thank you Grandpa Smythe!

Evelyn wearing her hat from Grandpa on our walk the other day.  She loves it!

Love. Love.

Happy Valentine's Day!

Our youngest daughter Evelyn Macie was diagnosed on January 3rd with stage 2 kidney cancer. Here is how it happened. On Wednesday January 1st Evelyn pee-peed in her diaper twice which was uncharacteristic. The diaper itself was brightly colored but it still just didn't look right. Thursday morning she peed in the toilet and it looked to be purely blood. We immediately called the pediatrician and went in for testing. She couldn't go at the office so we brought her home and she immediately gave the sample. We took it back to Dr. Edralin's and they tested it for blood and protein, both were present. It was sent out for further testing. They also gave her antibiotics and we gave her one dose that night. Friday morning I called when they opened to get test results and they asked if the urine was still concentrated with blood. It was not. It looked better. However for some reason I told them it was still straight blood and at that point they ordered a renal ultrasound here in Lancaster. I sent the big girls to Corey and took Evelyn to Renaissance imaging while Rob was in court. The tech worked for about 20 mins before she started scowling and probing on Evelyn's right side. Evelyn looked uncomfortable and the tech asked her if that hurt. Ofcourse I knew something was wrong. She finished the scan and asked us to wait in the room while she went to talk to the radiologist. She came back to us and told us to go directly back to our pediatrician's office. I called them and they were closed for lunch. Rob was also out of court for lunch so we decided to take Macie out for lunch. It was a tense time and Eve and I left early to drive back to the pediatrician's and just wait for them to reopen. Rob headed back to court. As I was driving back, I was at 10th St. W and Ave L and Dr. Edralin called me. He immediately told me that the ultrasound had shown a "growth" on her right kidney. He told me that he had already contacted a pediatric urologist at CHLA and that we had an appt. with him on Monday in his Santa Clarita office. I don't know exactly how I didn't wreck and I don't remember driving, but the next thing I clearly remember was sitting in the parking lot of the courthouse where Robbie was. I asked how large of a growth they had seen and eluded to millimeters. He said 2 to 2.5 inches at it's largest point. My heart was already pounding and I felt pain at that point. I said, Okay, Okay, tell me what you think it is. and that was the first time anyone said Wilm's. He said it was very early to even be guessing but that would be his guess and the guess of the radiologist that read the scan. Evelyn was sitting directly behind me in her car seat and I truly didn't know what to do. I knew I couldn't drag her through the courthouse as I frantically looked for Robbie. So we finished our conversation and I started driving toward the house. As I was crossing the freeway back toward home Robbie called me wanting to know where I was and what I had heard. That was the hardest thing in my life I have ever had to say to my husband. Ever. I knew once I said it that he would feel everything I was feeling and I hated to do it to him. I wanted to save her and I wanted to save him and I wanted it to just not be true. But of course I told him and asked him to go to Renaissance and pick up the disk of the ultrasound as Dr. Kim, our pediatric urologist, would need it on Monday. We were also told that when we went to our appt. on Monday, we should expect to be admitted to CHLA. I went home and saw the big girls playing with Scarlett and Corey out in the front yard. I took Eve and went over to talk to Corey while we waited for Rob to make it home. Once he came Corey took all the girls for me and Rob and I walked over by our house to talk. In typical Rob fashion he was very calm and simply said, "We don't know what it is, don't fear what you don't know". It was getting cold so we took the girls in and tried to continue our night. After we put the girls to bed that night I called my parents and my sister Amber. As I cried Amber said, "do you want me to come?". Of course I would have always said no, but I did want her to come. I kind of Needed her to come so I said yes. Thinking she would be there when we knew more. Rob and I finally went to sleep and woke kind of abruptly at 7:15 am. We had texts on our phones from Amber saying she would be in Burbank at 10:15 am and would rent a car. We got the girls ready and got in the car to drive the hour to get her. As we were driving by Golden Valley Dr. Kim, the pediatric urologist we had not yet met called us and said, "I have already contacted CHLA and they have a bed for you, you need to go today, we need a CT tonight". We drove the last few miles, grabbed Amber and rushed back to the AV. We didn't have a car that would take all of us to CHLA and leave Amber my car, so we dropped Rob off at Enterprise rental car so he could rent us a car to get he and I and Eve to CHLA. As we were driving from there to our house Amber found numbers in my phone so I could called Elders to come give Evelyn a blessing before we left for the hospital. I made four phone calls, got ahold of two elders and 30 minutes later we were packed for CHLA and they were there to bless her. Brother Kenyon blessed Evelyn and then Brother Rider gave me a blessing of strength and comfort. That same morning, my parents and Great Grandma, who was still at their house from Christmas, started driving toward us. When they heard we had been admitted, they just drove straight through to arrive at our house around midnight. We, of course were at CHLA. We were smart enough to take the disk we had gotten of the ultrasound and send the images to Jason. What an amazing blessing it was to have him to look at her scan. We have faith in his outstanding skills and talent and trusted anything he thought regarding her kidney. He said Wilms. Okay. I said, OKay Jason if it's not Wilm's what is it? He said, my first, second and third opinion is Wilms. OKay. At that point we were comfortable calling it Wilms and went forward with that as fact. We were admitted on Saturday at 2pm and had the CT at about 10pm that night. On Sunday morning our pediatric urologist Dr. Kim came to our room on 6West and drew us a picture of what he saw. The tumor was uncharacteristic of Wilms because instead of it being ON the kidney, it was actually INSIDE the kidney. Not typical of Wilms. Also, they saw what was a possible tumor thrombus stretching from the tumor out in to the vena cava which would be a potentially large surgical complication depending on how far in to the vena cava it went. Possibly requiring them to put her on bypass. I am terrified of bypass, I am terrified of bleeding problems. Once everyone looked at the CT it was determined that a full recection was the best course of action removing both the kidney and the thrombus hopefully in one piece. This is what we wanted. Once they saw the thrombus on the CT, they wanted an MRI to better understand the tumor and thrombus. Again they saw the thrombus but still didn't have a good handle on it. On Thursday January 9th Evelyn had surgery to have her right kidney and tumor removed. They told us it would be about a 4 hour surgery. It was without a doubt the most painful, both physically and emotionally four hours of our lives. My body shook on the inside and it surprised me when I was not shaking on the outside. I felt like I was in shock. During Pre-op they give your child the "happy pink juice" and they drink it and then just get flat silly. Evelyn was npo from midnight on yet told us, "My tummy is sooooo full, I can't eat any more french fries". At one point she pulled up her gown and said, "Where are my pants? I have no pants!". We laughed and laughed with her, she was so funny and silly. But when the fun was over and anesthesia and the urology resident came to move her to the OR, we knew it was time. There is a terrible place in CHLA and I have been there twice in my life. It is the point where you are walking alongside the gurney and your child is lying there on it. And you get to that white hallway and they expect you to say goodbye to your child and walk right, while they continue straight ahead. They call it "the kissing spot", I call it hell on earth. I have sent two children in there and walked away and both children looked perfect and healthy and whole. Yet they had to go and I had to walk away. But as we were standing there and Macie looked at me and I just tried to drink in every single thing about her, she looked in my eyes and out of nowhere said, "I'm a ninja girl". I laughed and cried and said, I know baby, you are my ninja girl. Then I whispered in her ear what she needed to hear from me and what I needed to say to her and then I told her "I'll be right there, I will see you in a minute". and then the anesthesiologist knew to take her away quickly for which I was grateful. And again I walked away from my daughter. At about 3 hours, Myself, Robbie, My Mom and Amber were sitting in the surgical waiting room and the guy in the waiting room called our names and we took off running toward him. The OR had called down to tell us "the kidney is out". Okay, "What about the thrombus?" He said, "they are working on that now". I said "NO- WHAT DID THEY SAY?" He said - "she said the kidney is out and then hung up on me". Okay, good. because if the kidney is out and the thrombus is not we have a huge new set of problems including possible tumor spillage which we had feared. Basically the guy didn't know what to say and thought that was what I wanted to hear. It was NOT. The kidney was out and in no way did we know anything at that point about the thrombus. We now buckled back down thinking if the kidney is just now out, we have a long time to wait while they work on the bleeding, look at the lymphs etc. But just 15 minutes later they called our names again and said she's out of surgery. Again we ran and followed him to the elevator and he took us to post op on 2. We knew how it worked from Allie's surgery, they take you to a small conference room where each family waits for their surgeon to come report. We got put in a room with another woman waiting for her son to come our of minor surgery. Of course I wished she was not there. But in the awkward few minutes while we waited, she told us that her now 15 year old son had his kidney removed when he was three and now plays varsity football for his high school. Uh, what are the odds? I had sat in the room so I could see out the door and down the short hallway so I could see Dr. Kim coming when it was time and I did. He walked in, pulling his mask off and his face was smiling. The pure rush of relief was complete. He told us the kidney came out with no complications, the tumor was completely within the kidney but pathology did a frozen slice in the OR and was still calling it Wilms. and most importantly he said, "There was no thrombus". What?? No thrombus? "Okay so what was it???". "What did they see on the scans???". He said, "I don't know and I don't care because nothing was there and that made my job a whole lot simpler". I could have kissed his feet. I was so relieved. He also said the lymphs looked inflamed but everyone thought that was just from the kidney being so large. They took three from three different areas of her body for testing. He stopped talking and of course I asked, "Okay, so what looked bad?" "What is the bad news, the downside?" He laughed at me and said, "Well she did poop on the table. A. lot." lol. I cried and laughed and listened to a little more about the surgery, all good but asked again as I couldn't believe this news. He again said, "the poop, that was the downside". Dr. Kim left and Rob and I just sat and smiled at each other. There were no words while we waited for them to take us to her. We were able to immediately see her and watch her wake up from anesthesia. She was comfortable and sleepy, not agitated at all. She had 6 iv's and her neck IV was sutured in. They had placed her picc line while in surgery to prepare for the chemo she would receive. She looked like a pin cushion and it was heart breaking, but mostly we were happy she was whole and complete. The joy was again overwhelming. As she awoke I asked her a serious of ridiculous questions, Evelyn how old are you? What is your favorite color? What are your sister's names? She got them all right and again we could breathe. It was in recovery that they told us that surgery had gone so well that she was not going to ICU as they had previously told us. We were going back to 6WEST. I was torn. I liked the idea of ICU, I liked the idea of constant monitoring, but if they were so comfortable with her health at this point, I was thankful they thought we didn't need all of those things. So back to 6West we went and it felt like going home. That was Thursday. She recovered on Friday and through the weekend and Robbie and I waited for pathology to come back on Monday. On Monday night our oncologist, Dr. Tran took us to the conference room on 6West. We were looking for a diagnosis and instead we got so much more information. He had Everything. He had pathology information (non-finalized), he had the chemotherapy regimen, he had a diagnosis and for that we were grateful. It was Wilms. Within Wilms there are variations. There is either favorable or non. Her tumor was favorable. They can have anaplasia cells or not and hers had none. Pathology had gone through the tumor once and would go through it again. They again called it stage 2 and told us the lymphnodes were clean and healthy. We would start chemotherapy immediately before leaving the hospital and would do it every Tuesday for the next 19 weeks, no radiation, outpatient chemo. It was an absolute dream come true. It was the dream diagnosis considering the circumstances. Is it horrible? Of course, but oh my goodness, it could be so much worse. We started chemo that night. Somehow we felt better, Knowing was powerful for us. K writing this has been kind of exhausting but therapeutic. While in the hospital I journaled for Evelyn because some day she will want to know about this part of her life, but having it in the blog book is important too. This is part of Addison and Allie's stories too. Girls, I love you. I do love you.

Sunday pictures