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!

Back at home

We are so happy to report Bree is back home. Her surgery went really well on Thursday. Thanks for all the thoughts, phone calls & comments wishing for a successful procedure for her. She recovered quickly and nursed right away. She seemed so hungry (as she should've been - they starved her for 8 hours!) and she ate really well. Before her surgery I was so nervous because I couldnt give her anything past 6am. She was scheduled for 2pm and they dont like anything to be in her tummy so she doesnt risk aspirating (choking) while she is asleep. Thankfully she did really well. She took a long nap from 6:30-9:30am then played in the toy room. Just when she started to get fussy they called us back to the Pre-op. She fell asleep on my shoulder as we were waiting nearly 2 hours to be called back to surgery...it was a loooong day!
She came out with an IV in her right hand.
This was supposed to last 2 more days so she could finish up her antibiotics via IV. Well, late that night (12:30 am to be exact) the nurses noticed that her IV had come out. She was due to receive 2 antibiotics that night so she needed to get the IV back in. Hesitantly, I woke her up and she got poked several times. I'll spare everyone the gruesome details. Finally, after 4 tries, 3 different nurses, tons of screaming and 2 hours later, an IV in her inner arm was placed. This topped the charts for one of the worst nights we've ever had! It was so hard doing this to a little baby that has no idea why she is getting poked over and over again. FInally, I got her to go back to bed about 3 am and she slept like a rock. The poor baby had such a horrible night. I'm really trying to tone down how hard this was. I think only myself and the nurses that night will know how traumatizing this was for her and me. I know I could have let the nurses take her and place me not see what they were doing, but I really didnt want to leave her. The instant she was done I wanted to be there for her.

Anyway, the next morning I noticed her arm was looking puffy so I called the nurse in and sure enough, the IV was no good anymore because it was infiltrating under her skin instead of her veins. So, they had to pull out this IV too. I was beside myself because I didnt want to put her through what she had already gone through the night before. However, the doc came in and told me that she could get a shot in the leg of her antibiotics and that would last her through the last dose (24 hours). That meant she wouldnt need another IV. Horrah!!! Better yet, he said after her shot he'd let her go home! Yeah Yeah Yeah!!!

She came home on Friday afternoon and was so happy to be home. She was a little apprehensive of her brothers becuase they wanted to see her, kiss her and after everything she went through she was nervous of people being so close to her. Fortunately it didnt last long and she was loving being the center of attention with her brothers.

This Thrusday she will have several tests done to determine if the cancer is gone out of her bone marrow and how much her tumor has shrunk. They will determine if surgery and/or radiation is necessary. The tests she will get will be an MRI, a bone marrow biopsy and a MiBG scan. She will be put to sleep again with general anesthesia. The MRI will determine how large her tumor is, where it is located exactly, and if surgery is necessary. A bone marrow biopsy will tell us if there are any cancer (neuroblasts) cells left. We are specifically praying that there be no cancer found there. The MiBG scan will show if there are any neuroblasts left anywhere in her body. This test will make the cancer cells "glow" and if she does need surgery, it will tell us exactly where the tumor is located & if radiation would be needed. (It's basically a more intense MRI).

I meant to have this posted before Sunday, but it didnt happen and I apologize...Many have asked if we are going to have a group fast for Bree and what to specifically fast for. We thought that since tomorrow is Fast Sunday we thought it'd be a great opportunity to fast as family & friends tomorrow and specificially pray that Bree's cancer be in remission, that there are no cancer cells found in her bone marrow and also pray that she not need surgery or radiation. We know that this might seem a lot to ask of Heavenly Father and regardless of the road to recovery, our greatest desire is that she be completely well. I know I am posting this so late so if you read this after Sunday and want to join in the fast, Justin and I will probably be fasting again on Thursday, the day of her tests, and anyone is welcome to join us.

We are anxious, nervous, excited to finally be at this point in her treatment. I want to know so badly that her body has been able to fight off this cancer completely. Until the next time, here are some pictures of our last stay...

She loved this little car. This stay we went on lots of walks around the hospital. We definitely need to get one of these now. She loves to drive!
She seemed to like this book of Barney and started giving Barney kisses all on her own. I thought it was so sweet.

Since she liked the Barney book I thought we'd try a Barney movie. I had no idea she'd love it so much. Caleb is such a big fan of Barney and now he'll be so excited to watch Barney with Bree!
No more broviac!! She had several skin tears due to the tape around her broviac dressing. Her skin is so sensitive. I'm so glad she'll have the chance to heal now.
As usual, even though she's been through so much, she's still smiling!