Meet Layla

On June 7th of this year we had the privilege of attending the Cancer Survivor Day. We got to see friends from the hospital like Bree's nurses and doctors as well as Bree's buddies who are survivors or are 'surviving' cancer.

They do a sweet ceremony where they call each person's name and award them a certificate, survivor bead and t-shirt. Each cancer survivor can make a necklace and add a bead each year they attend this special day. There are activities for the whole family like making a scrapbook page, participating in a drum circle, face painting and so on. And of course, there was cake! (Gunner & Caleb were VERY excited about that!) Here we are with Dr. Panchoosighn & Dr. Williams as Bree is awarded her certificate and bead of courage.


This little girl with Gunner is Tati, short for Tatiana. She is a survivor of Leukemia. She's such a sweet girl. I went to high school with her Dad, Brant. Her Mom, Andrea is so sweet. Tati is a darling little girl. She took a liking to Gunner instantly and they were hand in hand a few times that day. I wish I got that on camera!


It's amazing to think so many children have been through so much at such young ages. These little spirits are truly amazing and it was wonderful to be amongst so many parents and children that have gone through similar trials. Bone marrow transplants, multiple surgeries, chemotherapy, blood transfusions, NG feedings, and the list goes on. Yet, they are so happy and their smiles melt your heart. I'm amazed that Bree experienced so many of those things! I think back and I can't help but be amazed that she went through this.

Last but not least, is Layla.

We met Layla & her mom Nicole when Bree had her last bacterial infection back in April. We had to stay about 6 days in the hospital and I had finally reached the point that I could start talking to other parents out in the hallways. I don’t know what took me so long, it's almost hard to describe why but nonetheless, Layla and her Mom were at the hospital at the same time as us.

Layla happens to have Bree's same cancer, neuroblastoma, which it is pretty rare to come in contact with another person with her cancer because it is found 1 in every 250,000. Layla has been fighting since she was 3. She is now almost 6. At one point her cancer was in remission but her tumor grew back. She has been through several rounds of chemo, a bone marrow transplant, several surgeries and the list goes on and on. So, she has been getting chemo again to shrink down her tumor enough to remove it surgically. She will see a special surgeon in San Francisco that will operate on her tumor. It is a dangerous surgery and is risky.

A few weeks ago, my sweet friend, Summer, raised money (again) for our family…money to be spent on fun things in celebration of Bree being in remission. She has been too good to us. So many readers of her digital scrapbook blog (Summertime Designs) have read about our story and have commented or donated money and gifts as a result of Summer being so thoughtful. So with the money she raised, I wanted to pay it forward, in a sense. I wanted to buy some toys and happy things for Layla. Her birthday is this month. I have been thinking of this family so much lately. I've wanted to do something special for Layla and her Mom because I know, to some degree, what they have been through. I have just felt a special connection with her mom, Nicole. We’ve kept in touch since April and I have a deep appreciation and respect for this family. They have touched my heart. I’m anxious for Layla to have her surgery and so hopeful that this will help her win her fight with cancer.

So...since I know that several of the readers of our blog have donated money through Summer's website, I'm letting you wonderful people know that it will be used for little Layla, her Mom Nicole (a relaxing massage) as well as a toy or two for our Bree & the boys. :) (I have to spoil the girl now you know!) If you would, please keep Layla in your prayers. She is such a sweet girl!

Wicked!

On July 1st we went to see Wicked! I was so excited to have Justin go with me. I saw it a few months before Bree was born with Justin's mom & sisters in law. So, it had been a while since I've seen it. I was espeically excited to go back again because we were in the second row! I think I had a huge smile on my face the whole night. It was so amazing being so close! The music, the atmosphere, the storyline...I love it all!

These were my cute shoes that I loved to look at, but they were so uncomfortable that I wanted to throw them in the dumpster immediately after the show! I think I still have scars from the blisters they gave me! Ugh!

Me & my cute hubby. He had a great time, enjoyed the music and laughed a lot. Mission: accomplished!
Can't wait to see it next time it comes!

Grateful

Today Bree had a fever of 101.5. In the past 7 months, had she had this high of a fever, we’d immediately be checked into the hospital and most likely be admitted for a bacterial infection or neutropenia (no white blood cells). This time it was due to an ear infection. An ear infection, I’ll take it!

We got to drive back home to our house, give her some medicine and I was able to put her to bed. No hospitals, no scares that she had a bacterial infection. No worry that she was in septic shock. It was a GREAT feeling.

Tonight as I rocked her to sleep, I couldn’t help but let my mind wander back to when she would spike a fever and I’d rush her off to the hospital. I remember my mind would be sick with worry, yet I had faith that she’d be okay, and I had great faith in the doctors and wonderful nurses that cared for her so much. I remember one of the times she spiked a fever of 102 and I had to rush out of the house, grab my emergency hospital bag and get to the hospital as fast as I could. I remember holding my sweet Bree so close to me as she shivered from the chills that the fever was giving her. As her fever rose to nearly 103, the nurses were rushing (although they were always calm) all around her, placing wires to her chest, setting up her IV fluids & starting her meds. I remember my mind wandering to this moment, the present time. I wanted so badly to be home, to let Bree rest in her bed and just to not be sick anymore. I wanted her to be free from wires, free from this sentence of always going back to the hospital and staying for days at a time…and now she is…FREE!

Tonight I feel very grateful. Grateful to a Heavenly Father that truly granted us a tender mercy when He showed us that Bree had black eyes. Without this sign, we would have never known she had cancer. It might have been another year or two before the tumor inside her tummy was found. And with her cancer (neuroblastoma), the older the child is when it’s found, the worse the outcome can be. I’ll always be grateful for those beautiful black eyes.

(A few weeks before she was diagnosed)

(The day after she was diagnosed)

(The day she started chemo)

So, I’m thankful for this moment, this time that we get to spend with Bree and with our entire family being together enjoying one another. I’m sure years from now when she’s a teenager and she’s driving Justin & I crazy, I will look back on these moments in time and feel grateful once again, that we have her, that she beat this cancer and that we can watch her grow into a beautiful young woman. I can’t wait.

4th of July Weekend!

This year we followed tradition and headed up to the cabin and out of the heat! We had a wonderful time with Justin's family. It has been so long since we've all been together so it was great to be with everyone again (we missed you Krista & Ryan!).

For the actual 4th of July, we headed up to Eager for the annual parade. The kids loved this. They throw candy out after every other float goes by so Gunner was bound and determined to get as much candy as he could. There were a few times when his cousins didn't get any candy so he took some of his own and shared with them. Ah, what a sweet boy we have! He made his Momma proud!

Waiting for the parade to start...

Alisa made these super cute hats for the girls. Isn't she crafty? What cute girls!

Bree kept hers on for about 30 seconds. She's actually signing "all done."

I always get a little choked up when floats like this one goes by. I'm so thankful for the people that have served our country and are currently serving so that we can continue to enjoy our freedom.

The statue of liberty made an appearance too. This float was actually pretty cool.

Miss Breezy was her usual sweet self. She loved the parade. She was content to sit in her stroller with her blankie and watch the floats go by. She clapped her hands & squealed with delight as she'd watch her cousins and brothers run after candy. I'm so lucky to have this girl!

Later that day we had the traditional BBQ with hamburgers, chicken, hot dogs and all the fixins! So yummy!

(And, no, those are not beers, it's IBC root beer! The best ever!)

Isn't this cake cute? This is my neice Kelsey and Momma Cook. Great job ladies!

During the BBQ, Caleb decided he'd go on an adventure of his own in the stream by the cabin. He was covered in mud! It was extra fun cleaning him up! At least he had a good time!

God Bless America! The end!

Last month in a nutshell

I know it's been a while since I've posted and that's due to us getting back to "normal" life. I admit, it's been an adustment getting back to the swing of things...swimming lessons, grocery stores, preschool, etc. Trust me, I'm so grateful to be doing the crazy normal things, I'm just getting used to being the full time Mommy again!

It's been over a month since our last hospital stay. It's almost felt weird not going back...almost. But trust me, we have enjoyed it! It has felt so great to stay home and know that Bree's treatment is over. As for us, I wanted to post a few pictures of the last month.

First thing's first, Breezy is doing great. She's is crawling all over the place and enjoying her new freedom. She's started to get feisty and develop attitude. It's fun to see her personality develop. She's also started to become more girly at her 15 months of age. She will bring me her shoes and hold her feet in the air for me to put them on! I LOVE that she loves shoes! That's my girl! Also, she has been interested in wearing bracelets and sunglasses. Anytime I have a bracelet on, she has to wear one too. I'm amazed that she is already so interested in these things at such a young age! Last of all is her hair:

It's growing! I took this picture about 2 weeks ago. It's almost 1 inch long now. With her new found girlyness she's tolerated wearing her bows and hats, but now that her platinum blonde is coming out, I want to show it off!

This past Wednesday she had a check-up with her oncologists which entailed a physical exam and bloodwork and everything is looking good. She'll go in once a month for the next 2 years for the blood work and every 3 months she'll have the other tests done (MRI, bone marrow biopsy, etc) to look for any sign of the tumor...which they won't find because it's gone! Goodbye cancer, we won't miss you!

As for the boys, they've been doing great. Caleb had his last day of Kindgergarden on June 3rd. He had a program at school which he thoroughly enjoyed. He loves his friends from school. He's already missing school and his teachers.

Gunner had his last day of preschool on May 28th. Here's a picture of him with all his friends from his class. Thanks Rachael for letting me steal this off your blog. :) Gunner is on the right side.

Then (about 2 weeks ago) we were able to go on our first trip as a family in over 7 months! We went to the cabin and had such a great time. The Browns (Krista & Ryan) were there at the same time and we had so much fun with them! The boys were in heaven with all their cousins!
Gunner and his cousin Cameron have matching PJ's (thanks Krista!) and they were so excited to be twins up at the cabin. These two were inseparable. Everywhere they went they were together. Cute boys!

This trip Bree got to take her first ride on the quad with Daddy. I was a little nervous about how she'd do, but she was loving it and Justin was loving having his little girl ride with him all while enjoying the beautiful scenery all around them.

Last year Justin got me a new camera, which I love, but I didnt really know what I was doing with it because it had a bunch of fancy buttons and gadgets. Well, I've taken a few classes and tried to get aquainted with the camera so this cabin trip I tried a few of the techniques I've learned. I do not claim to be a photographer, but it's been fun experimenting!

Trying to capture "Sunflare"

I love my boys but for some reason whenever I want to take some cute pictures of them, their faces are always stained with whatever food they've been eating. What kind of Mom takes pictures with stained faces? Oh well, maybe I'll learn photoshop someday and remove the brownie stains!

This is my ultimate favorite shot of the day. The wild flowers are so beautiful at the cabin. Bree was being a really good sport and let me take some fun pictures of her. She is my little supermodel!

End of Treatment Ceremony

On May 28th, 2009, before Bree left the hospital for the final time, the staff on the pediatric oncology floor threw her a big party! Every time a child completes their chemotherapy treatment the nurses have a celebration for them and the latest 'to-do' is to ring the GONG! This gong was donated by a family that experienced & conquered cancer this past year. The gong symbolizes the end of treatment. It is something tangible for the kids to "hit!" In fact, Caleb and Gunner had the chance to hit the gong after Bree did and after Gunner took his turn he said, "I killed the cancer!"
 
The video below is Bree's last day in the hospital. Keep in mind, this was only 6 days after surgery and she was already standing up again! Children are so resiliant, it's amazing! 

Make an on-line slideshow at www.OneTrueMedia.com

She wasn't a fan of the loud noise the gong made but I love the symbolism in doing this. It's a new beginning, free from cancer. I'm excited to move on and watch Bree grow, free from this horrible disease. Down with Cancer!

Remission! What?!...Yes, REMISSION!!!!

As many of you know last Monday the 18th we got the discouraging news that one of Bree’s tests still was positive for cancer. Last Friday she went in for a two hour surgery to remove the last bit of the tumor in her abdomen that showed up on the scans. They then ran tests to determine if the tumor was active or not.

Two days ago, May 27th, Dr. Williams came in to our hospital room and told us that Bree’s tumor biopsy showed no active cancer cells were found! That was the news we were hoping to hear. What a blessing. That same morning Bree’s 5 oncologists plus the radiologists, pathologists and nurse practioners met together for a ‘Tumor Board” where they discuss what is next etc. As a group they unanimously agreed that Bree has shown a complete response (CR) to the treatment she’s received. Yea!!! They declared her to be in remission now! No, your eyes are not playing tricks on you! Yes, REMISSION!!!!!

When he told us this news, Justin and I just basically sat there with our jaws dropped on the floor. We didn’t even know that would be an option at this time. We thought at best they would say to “observe” and at worst recommend a bone marrow transplant. We were almost in disbelief because she still had the MRD bone marrow test show positive for neuroblast cells that previous Monday.

To explain in more detail about the MRD test, it is a new test that has been developed in the last 2 years. It hasn't been in a lot of research yet but it is a good tool to have. It tests for any neuroblast in her body. The doctor explained to us that since her tumor biopsy showed that there are no active cells, this could mean that the neuroblast cells that showed up in the first place could be slowly dying or are on their way to dying, yet will still show up because the test just looks for any neuroblast cell, whether it be active or slowly dying. Hopefully that makes sense. Over the next year, she'll be closely monitored. She'll have blood work done every month as well as an MRI and bone marrow aspiration (biopsy) done every 3 months. And the theory is that we will see a negative MRD test in the next year because the neuroblast cells that showed in the test are on their way to dying.

Initially Justin and I weren’t sure how to react. We were a bit guarded due to the MRD results explained above and because they don’t consider the cancer cured for two years. Our fears are real and valid but we decided to live by the Savior's words when he lovingly told “Doubting” Thomas “be not faithless, but believing” (John 20:27). We are so grateful to our Heavenly Father that he intervened on our behalf and restored Bree to health. We believe that He has granted us this blessing because little Breezy has a lot to teach us and a lot of good to do on this earth!

Right after we were told the news we took Bree for a walk to her favorite spot at the hospital, the trains, and we called our parents and family members. As we were talking to people, it started to become more real. It started to set in…Remission. She’s finished. Done. No more chemo. No more hospital stays. No more pokes (at least for 3 months at a time). But, now she’s finished with treatment. Wow, that feels so good to say.

Just to back up a bit and get caught up, here are some pictures from our LAST (gasp!) L-A-S-T! hospital stay:

Before her surgery, posing with Daddy.
A quick picture with Mommy before they took her away to surgery.
Coming out of her surgery. She did so great!

This bracelet was given to Bree shortly after she was diagnosed. I thought the symbolism was perfect. This is a word we have come to live by day to day.
Showing off her owie...4 inch incision. She's so tough.
This is the smile I got when I told her the yucky tumor was gone and no more owies!
A quick pose as a family on our last day at the hospital. The boys came to celebrate Bree being finished with her treatment. The nurses at Banner Children's do a wonderful ceremony when a child completes their chemotherapy treatment. I will do a separate post on this later.
We wanted to say thank you to all our doctors & nurses for taking such great care of our sweet Breezy so many times. I have come to develop great relationships with these wonderful people. Our nurses are the best around. We love all of you and will miss seeing you on such a constant basis, but will come back to visit often. (But, sorry, no more sleepovers. :)) Thank you to our doctors (Dr's Shah, Panchoosihgn, Abella & Williams) who work non-stop, who dedicate so much time and energy into fighting and beating cancer. We are so grateful to you all!

Thank you to our family and the wonderful friends and readers of our blog who have touched our hearts with your comments. You have lifted us in ways you will never know. Thank you for the sweet gestures of love and compassion. Meals dropped off, flowers brought, gift baskets, visits at the hospitals, watching our kids, bows and toys for Bree, notes of encouragement and the list goes on. We love you and YOU have lifted us, so thank you!

We are so indebted to our Heavenly Father who has been with us every step of the way. We thank the Lord for this great blessing. Words are just not enough to express our feelings. We are thankful for His tender mercies, the miracles we've experienced, the Spirit that has been with us. There have been so many nights that I have spent over these past 7 months that I have felt the Savior pick me up and carry me through this. I'm not saying this was easy by any means, I just know that with the help of our Savior, He got us through it. I know He has been with Bree through her surgeries and times when she has felt sick, afraid or alone. His children are so precious and I am so grateful to have the opportunity to be a Mommy to my kids.

Lastly, I wanted to tell my husband how thankful I am for him. He has been such a wonderful husband, father and friend through all of this. He's been the one I lean on, who I depend on when I've been at the hospital for several days at a time. He's been the one to help me, calm me down and let me talk things out when I thought I couldn't take it anymore. We've leaned on each other through this entire journey and I love him so much for showing me courage, perserverance and faith in our Heavenly Father.

And now the cancer-free party planning has begun! Details to follow! Our love to all!!