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!!

Get out tumor!

Quick update:

We heard from the doctors yesterday and they spoke with the surgeons. They told us that Bree's tumor is resectable which means they'll be able to operate. That's good news! Our hope is that they'll be able to get it all and that there won't be any need for radiation. Of course, I'm anxious about surgery because it's a big cut (2-3 inches) in her little tummy. And its surgery. General anesthesia, more IVs and pokes. I'm already nervous!
They'll most likely operate through the same incision as they did in her first surgery (October). So that's also good news, no new scars, hopefully. 

She'll go in for surgery on Friday morning. It's sooner than we expected but we are just ready to go at this point. The sooner they take the tumor out, the sooner they can begin the biopsy and we can get results. We are hopeful that her tumor does not have any active neuroblast cells. If her biopsy comes back as "non-active" the doctors aren't sure, but are hopeful that the cancer found in the bone marrow may also be "non-active" as well. They are researching it with nationwide experts specializing in neuroblastoma. We won't know this bit of info until her next scans and bone marrow biopsy 3 months from now. We know from this point on everything is in the Lord's hands and we trust in Him. 

Just had to throw in a picture of our sweet Breezy.
Thanks to all for the sweet comments, emails & phone calls. It surely does lift our spirits and helps us keep going.

Heartbreak

I'm not going to beat around the bush. Today we received the news that Bree still has cancer in her bone marrow. This was very upsetting news. There were 2 different tests conducted in her bone marrow. One test concluded that there was no cancer to be found. The other test (the MRD...the one we were waiting on which came in early) had positive results, meaning that there were still tumor cells found her in bone marrow. What is so hard to understand about all of this is that her other tests (MRI, urine, blood, bone marrow) came back with negative (no cancer) results. With this one test, it is determined that Bree still has cancer in her body.

The doctor was really puzzled at these results. Looking at the tests above they gave us hope that the MRD test would come back negative. He was very confident that everything would be fine because all the signs were pointing in that direction. As we were there, the MRD results came over by fax and when they came back positive, he kept saying, "it shouldnt' say this." They weren't sure what the next step would be because this was so rare.

Her MIBG scan showed that her tumor inside could be active (cancerous) or it could be a mature (benign) tumor or scar/dead tissue. The only way to know what it is exactly is to take it out and biopsy the tumor. So what's next? At this point, the surgeons will be reviewing her case as to whether it is medically safe to remove the tumor. It is located in her abdomen next to her aorta and inferior vena cava (major arteries). They told us today that if they can, they will get her in to have her tumor removed by the end of this week or possibly next week.

If the tumor biopsy comes back as scar tissue or mature tumor then this could mean that the cells inside her bone marrow could be not active. They could be mature cells as well. To be sure, Bree would be monitored every 3 months with an MRI and bone marrow test to make sure there are no new neuroblasts growing. They tell us that this is a very fast growing cancer and that if it grows, it should show up in her tests.

If her tumor comes back with active tumor cells, there's talk about doing radiation to her abdomen to kill off the tumor cells and it could also mean a bone marrow transplant in her future. Which means more intense chemotherapy and scarier things I dont even want to mention at this point.

Tonight as I sat rocking Bree to sleep, I finally let the tears come. I have felt all day like I need to be strong. I need to have faith that Heavenly Father has a plan for Bree. That she is special to Him and that He has great things in store for her. But, as I let my mind wander and worry about what could possibly be in store for her future, my heart began to break. When you have a baby you never think that they will be dealing with cancer or chemo, multiple surgeries, blood transfusions, bone marrow biopsies, etc. She's been battling this cancer half of her life.

I feel crushed in a way because when she was diagnosed they gave us this plan...8 rounds of chemo and she should be done with this cancer. Yes, her tumor has shrunk, yes, its out of her bones, but she's not totally clean. We are not talking about remission yet. At this point we are still confused, bewildered by these results. Justin and I are mentally drained. It's been a hard day. We had much different ideas about today. It was supposed to be a day of celebration and excitement. I was supposed to be planning a cancer-free party. Instead, we have to dig in our heels and move forward, walking blindly by faith and continuing to live, being grateful for the miracles we've seen, and truly enjoying more of the little moments. 

This is a long one!

For those that have asked me about Bree's tests, I'm apologize for not posting yet. We were able to go in last Thursday and get her final tests done. She had an MIBG scan, bone marrow biopsy, bone marrow aspiration (taking a tiny piece of the bone out) and blood work. She also received an antibiotic via IV (pantamadine) that will last her the next month so she doesn't have to take any meds by mouth. Everything went pretty well. We were in and out in about 4-1/2 hours.

As for results, we'll go in tomorrow to hear about her scans and some of the bone marrow results. There is another test called the MRD (minimal residual disease) that will look for any microscopic neuroblast cells in her bone marrow. This test takes a little longer so we may not have that result until Wednesday. I will most likely do one post when I have all the results. We are praying that we'll hear the word "Remission" this week!

As for now, to get my mind off things, I'm updating on stuff that's been happening around here lately. First, let me start with Caleb's spring festival. It was April 24th. Caleb had such a blast. His school does such a great job. He & Gunner went rock climbing, jumped on the bouncers, danced, and played games until their pockets couldn't hold any more candy! Here's a few pics:
Here's Gunner on the rock wall. He got about half-way up. Not too shabby for a 4 year old!
Caleb's all harnessed and ready to go! Hey, who's that studly, handsome, hot man? Wow, I wish I had a guy like that! Oh, wait, he IS mine!
He did pretty good...with a little help from the hot guy!
As soon as the DJ started the music, Caleb dropped what he was doing and ran straight over to the music. He started dancing all by himself. I loved seeing him bust a move!
This is Caleb's teacher, Miss Amanda. She is such so wonderful. She came out and danced with Caleb even when no one was dancing. Now that's a good teacher!
It's safe to say Miss Amanda is his first crush! He just adores her!
Then, almost 2 weeks ago Gunner got to celebrate his 4th birthday. He is all about good guys vs. bad guys so we had a super-hero party! Actually, it was the funnest party with the least amount of work. We set up the trampoline with a sprinkler underneath, had water balloon games, pizza & cake. Gunner was so excited for his cake...I think he wanted cake more than presents! Here's a few shots of his party:
I think Justin is getting the better end of the deal here. Although the boys LOVED this!
My 4 year old, pizza stained face and all!
This cake is definitely not my best work, but I dont think Gunner cared, all he could see were his new "guys!"
These masks were the party favors. Who knew the cheapest things were the best for little boys? Spiderman to the rescue!
We let Caleb ditch out on school so he could enjoy the party. He had so much fun with all the kids!
Last but never least, Bree enjoyed her first bath in over 7 months. Since she had the broviac I couldn't bathe her normally because the bandage couldn't get wet so we just sponge bathed her until now. I dont have a bath picture that is appropriate for the internet so I took some pictures of her in one of her 20 swimsuits yesterday. She's giving me her future supermodel pose!
Until the next time when hopefully you'll be reading about Bree's cancer being in remission!

MRI results

Today Bree had her MRI test. Originally, she was supposed to have the bone marrow biopsy and the MRI done today but sadly, there were several scheduling problems with anesthesia so the bone marrow biopsy is set for next week (May 14th). (We actually found out this news on Tuesday of this week but were still hoping and praying that the bone marrow test would get done when we showed up today so I didnt post this news until now).

However, she still had her MRI done and we received some good news in that her tumor has shrunk down significantly! It now measures 7.3mm x 5 mm. That's about the size of your pinkie nail. Originally it was very large, starting in the left adrenal gland, reaching through vital organs like her liver, around her spine and pushing on her left kidney. So the fact that it shrunk down so much is very good news!!!

We still have more tests next week. She has the bone marrow biopsy and an MiBG scan that will tell us if the tumor that is still there has cancerous cells (neuroblasts) or if the tumor has matured enough into a benign tumor (ganglioneuroma). After these results the doctors will discuss whether her tumor should be removed through surgery, or if radiation is an option or better yet, if no surgery is required at all. We are obviously hoping that surgery is not needed and that the tiny tumor inside her would just be considered a benign tumor (non-cancerous). We hoped that it would be all gone but IF it is non-cancerous then even though the tumor is there, the cancer is gone.

So far we only have a small piece of the pie. We are still waiting on more blood results and urine sample. These tests show tumor markers and whether they are positive or negative for cancer cells. (We should know this info within the next few days.) Then, next weeks tests should give us the rest of the pie. Oh, I can't wait for the rest of the pie!!!

I've been asked by several people why we have to wait a week to do more tests and why we couldn't just do them all this week. One of the reasons is because these tests take a long time and the docs dont want to put Bree to sleep longer than necessary. Today her MRI took almost 2 hours (she is not allowed to eat anything at least 6 hours before hand - which is hard for a nursing baby!). The MiBG scan next week can be up to 2 to 2-1/2 hours as well as 30-45 minutes for the bone marrow aspiration (biopsy). Another reason we have to wait is this intensive MiBG test requires that Bree be injected with nuclear medicine. This nuclear medicine comes from Canada once a week, on Wednesdays, and they only perform the tests on Thursdays & Fridays. So, next week she will get the injection on Wednesday and Thursday will be her tests (requiring general anesthesia again).

We are excited for the good news today. I debated posting anything today because I know we still have more tests to come, more waiting to find out results. But, we know so many people out there are praying for Bree and we wanted to inform everyone of what is happening. We still have a way to go but are so grateful to the Lord for this first bit of encouraging news.

We are very anxious for the tests next week. They told us today that most likely we shouldn't know results of the bone marrow until the following Monday, May 18th. So, please keep the prayers for Bree coming! She is truly a strong little spirit that is meant for great things on this earth! Our love to all!