Scan #2 - N.E.D.

I'm not quite sure what is worse... the week leading up to scans or the waiting period in between when it is done and you wait for results.  I wouldn't wish this stress on anyone.

Denny and Kayla left for St. Jude Tuesday morning.  They had a rain delay in Dallas, but made it there safely late Tuesday night.  As far as appointments go, it was a pretty light load this time which was good.  In Psychology (yes, we completed that dreaded 2nd day of 3 hours of testing) Kayla scored off the charts in most categories.  The day ended early at 12:00 leaving them a few hours to go play over at the Target House.  It's always fun to see all of the familiar places and faces that we considered home and family for so many months.  Of course, it is nice to hop on that shuttle and leave after too.

Finally getting a bite to eat in the airport

Playing Piano in the Amy Grant Room

A much needed hug from the beautiful Michaela

Today started bright and early.  We had told Kayla that there would be no IV this time around and so she was so very happy!  To our dismay, there indeed was an IV needed. Not because of the Lumbar Puncture, but because today was a Contrast MRI.  Oops.  Just when Denny had Kayla convinced that there was no turning back at this point, the darn IV would not hit the vein.  Luckily the nurse called in an expert when she saw Kayla's arm covered in blood and noticed her shaking so badly.  The next nurse was a serious pro with a sweet disposition who quickly got the IV started.  Kayla said, "Dad, I don't think I will be able to lie still for my MRI because I am shaking so badly. But I will really try".  If that doesn't break your heart.... The sweet nurse went and got a few warm blankets to put around Kayla's little body to warm her up. It worked!

In Physical Therapy, Lauren was very impressed with how amazing Kayla continues to do. She even said she thinks she is ready for soccer.  I am still very leery about balls flying at her head! Kayla's visit with her Endocrine doctor.  As I expected, her TSH level was even more elevated then last time.  We will be adding a thyroid stimulating medication to her daily Zofran to help. This is a very common occurrence after the treatments she has received.  It's not a huge deal, but it is forever. Just one more thing to remember, right? 

Kayla and Denny will land at 11:30pm tonight.  I can't wait to have us all home together again.  We will be able to breathe... at least for another 3 months.  That's right, today Kayla's MRI resulted in NED once again. (No evidence of disease)  Thank you God!!!! Denny said he had more details for me later, but for now they are literally running to catch the shuttle to the airport.

Thank you to all of you who have had those candles burning and prayers going up. We feel it all and I know it is working. Please don't ever stop.  There is no end to this story.  There is no magical number of years where this all ends.  Cancer is a beast. 

                                                                          We NEGU

Counting Down To A Truly New Year

I don't think I have ever been so excited to see a year end.  2012 has been in some ways the most incredible year ever... but of course, also the most painful year. My head literally spins when I try and wrap my mind around everything that has happened.  So I don't try too often. With the count down to a new year also comes our countdown to Scan #2.  January 7th, Kayla and Denny will be on their way back to Memphis to visit old friends and hopefully once again hear those magical words, NED. (No evidence of disease)  Denny has returned back to plumbing and is also taking a full load of classes to continue his pursuit into medicine.  Busy is an understatement and makes me miss that special family time we had just a few short months ago.  We are hoping for simplicity to enter our lives this year. We hope for continued health and healing for Kayla.

Have you heard of Make-A-Wish?  It is an incredible organization that grants one very special wish to children (under 18) who have been diagnosed with a life threatening disease.  Because Kayla will not be considered in remission until five years after treatment (June 2017), she for sure qualifies.  What did Kayla wish for?  A trip to somewhere tropical to swim with the dolphins and snorkel. Last week we got word that Kayla's wish will be granted! We are so excited to finally take our very first family of four vacation ever!!!  So, we will be in Oahu, Hawaii over Kayla & Denny's birthdays this year (and mothers day too!) We originally wanted to wait a year.  To spend time getting back into our routines.  To let Kayla continue to be even more healed.  But the reality is that routines and health are something that can change in the blink of an eye. Boy do I know this! I hate that she has a life threatening disease. I hate it.  I would rather have her guaranteed health than be able to go on a vacation or any other thing in the world.  Unfortunately, that wish isn't so simple. So we will take this incredible gift of time together and enjoy every second of it. I know we will make memories that will be cherished forever. Thank you Make-A-Wish!

There is breakthrough news happening in the world of Pediatric Cancer when it comes to blood cancer though.   Children's Hospital of Philadelphia (CHOP) has discovered a new incredible treatment for patients with Leukemia.  It is deemed "fighting fire with fire".  Could injecting patients with HIV cure their cancer? It's happening. Just incredible.  Have you heard of this yet? If not, you should really Click here for the short clip of this new treatment available .  Doctors have seen great success and I am praying this is the cure for our sweet friends Matthew and Phoebe.  Phoebe is our precious tiny friend from Canada who we met at St. Jude during her second transplant.  On December 1st, Phoebe and her family celebrated being 1 year cancer free after two gruesome transplants.  Only 10 short days later, my friends learned the devastating news that Phoebe had relapsed once again.  Not only did leukemia return, but she also had a cancerous tumor in her pelvis. This new treatment at CHOP is not a guaranteed successful plan, but the doctors have seen amazing success from it.  Phoebe and Matthew need this miracle.  Phoebes cells have been collected and they are sitting in Philadelphia where doctors are watching them and hoping the previous steroids that she was given to control the cancer do not affect the growth in her cells. You will all want to follow this incredible families journey.  I am amazed at Jenny's optimism and strength. Such a beautiful family.  Click here to follow Pheobe's story

This year we were lucky enough to spend the holidays at home.  There wasn't a second that went by that I wasn't truly grateful just to be all together... as a family of four.  It is something I will never ever take for granted. You might remember the last post where I talked about the very important petition that could finally appoint a Pediatric Oncologist to the National Cancer Advisory Board?  Thank you to those of you who did sign this petition. Unfortunately, there were not enough signatures and so this did not happen. Once again, the advisory board is filled with Adult Specialists.  Not that we don't need those! But we have the funding there.  I can not say how devastating this is to the families who sit here and watch our children fight.  They too deserve a voice.  Recently, I watched one of the most moving short documentaries ever.  You would think that I would already know all of the facts and statistics.  This was shocking.  Disheartening.  I can't get it out of my mind.  It's only about 30 mins long and I guarantee it will move you and you all will truly understand why I can't stop fighting to spread the truth. Not only do us families have to go through this, but we also have to be the voice. We are the ones who are trying to raise awareness and BEG for people to hear our cries that we do not have the funding needed to change the way these kids are treated.  The medicines they receive are way too harsh and are not specific enough to their type of cancer.  It is not fair that no new drugs have been approved in over 20 years. We can do better for our kids. They are our future.  In the end of this incredibly moving documentary (created and narrated by a child who is a cancer survivor), there are ways that we all can help.  I LOST it when I saw that Dr. Gajjar is one of the doctors who gives his time for free to help.  Such an incredible team of doctors who truly want to see change.  Please, watch this video. I promise you too will be sharing it with everyone you know. It's that good. TheTruth365.org

I long for a day when no one else ever has to know this fear. This pain. This truth.  Every headache continues to bring me to my knees begging that it's not something more.  Recently Anthony had a head ache that lasted 3 days before he finally had a horrific fever.  All I could say was THANK GOD. Thank God it wasn't something more.  I long for a day when we can all say, "Oh... just cancer?  No problem. There is a cure for that".  Or better yet, a vaccine.  It will happen one day.  Us parents and pediatric oncology teams will see to that.

 New PJ's and special drive to see all of the lights. Mommy's favorite Christmas Eve tradition!

 I love love LOVE this picture. We do believe! (The Christmas House)

 Kayla lost her 9th tooth! #10 will be out soon too. LOOK AT THOSE CHEEKS!!! :)

Good bye 2012 and HELLO 2013.....

VERY IMPORTANT PLEA

 Hello friends. I know you all are busy... tis' the season, but I need help! I want to urge you to do something right now that can help make a change for kids fighting cancer.  There is a new petition out right now that is going to directly to President Obama.  We need to act fast. Only 3 more days left!!! We still need 18,757 signatures for this to pass. Time is running out. Please help spread the word!

PETITION TO HELP CHILDREN LIKE KAYLA

Appoint A Pediatric Oncologist to the National Cancer Advisory Board

Please sign this petition to urge President Obama and National Cancer Institute Director, Harold Varmus, to appoint a pediatric cancer specialist to the National Cancer Advisory Board in order to give a voice to all children fighting cancer!
The National Cancer Advisory Board is the advisory council for the National Cancer Institute. The board helps set the strategic direction for the NCI and has direct input on grant and funding decisions.

National Cancer Advisory Board Members are appointed directly by the President. Currently, there are no pediatric oncologists on the panel.

HOW CAN OUR CHILDREN RECEIVE THE FUNDING THEY DESERVE WHEN THERE IS NO ONE REPRESENTING THEM AT THIS TABLE? BE THEIR VOICE TODAY AND SIGN AND SHARE THIS PETITION!

If you are on Facebook or Twitter, please share the link. Email it to your friends and family. Thank you to all of you who have done this already and those who will. God knows we need all the help we can get to get more funding. Thank you!!!

Tis The Season

This is exactly what we have been waiting for.  Our holiday do-overs.  

This week the kids went back to school after a wonderful week and a half off.  I am sitting here staring at our little Christmas tree that we picked out with care last Sunday night.  I have been going through old blog posts from this time last year and cannot believe how far we have come.  Actually, I have been working on putting this blog into a hard-cover book that the kids will be able to read one day.  Both of them, especially Anthony, are too young to truly understand all that has happened.  One day, I want them to be able to read it.   Have you heard of Blurb?  It's a book building website that gives you a free program to download.  From there you can create your own books!  It's basically a much fancier version of what snapfish and shutterfly offer.  I needed something that could hold the hundreds and hundreds of published blog posts and pictures.  I have used this company in the past and have been so impressed by the quality.  The best part is, that it made downloading my blog simple! I just entered my blog address and password and voila!  Well, not quite that simple. Is anything really? I still need to go through and consolidate and re-size pictures.  So, I have been spending hours editing.  I have known that I needed to do it, but it's just a really tough project... mentally.  Going back and seeing these pictures.  I can't believe this is us. I can't believe this happened to our family.  I think I have been in shock. I think I still am. No, I know I am.  So there are lots of much needed breaks I have to take in-between to compose myself.

Christmas Eve 2011

Yesterday, I found myself staring at the pictures of the balloon Christmas tree we had last year. Pictures of Kayla taping paper ornaments onto it that we had cut out. Simply trying to make the best out of a situation we were thrown into.  Her parents trying to keep magic alive for a 7 year old girl who believes in Santa with all of her heart and loves Christmas.  Anthony was still home and hadn't come to be with us yet. My heart was aching beyond words for our family to be together and for this to all be a bad dream.  As if it weren't bad enough to be going through what we were, we had to spend Christmas away from Anthony.  I remember crying so hard each and every night missing him and the energy he brings to our family.  Craving for that piece of normality to return to us. On January 5th, we were a family of four again.  Radiation had began and we had no idea what to expect.  We were scared, shocked, and clueless.  I remember waiting until the kids were asleep in their room before I would completely lose it most nights.  Denny would comfort me and hold me until I had no more tears left to cry.  He would grab me ice bags for my eyes and just hold me. We would stay up way too late expressing every emotion that we had kept in throughout each day. I tried to stay off of the internet as much as possible.  Seeing posts about friends and their families doing normal things was like a stake through my soul.  We should have been at home surrounded by family and friends too. Or complaining because our kid had a cold or the weather was just atrocious. Writing this blog was my biggest form of therapy.  With each new day, was another procedure or step towards trying to fight this monster. With each new day, I had new feelings. It was nice to have a place to be in my head to share what was in my heart.  So thank you to all of you who have let me vent.  To all of you who make me know that I'm not alone... still.  I am forever grateful for your loving words and prayers.

Right now, things are wonderful! Right now, we are running and playing and just so grateful. From birth, Kayla has always been a very serious girl. Always striving to do what she is told and of course to be a perfect student.  We joke and call her a little old lady.  She carries the weight of the world on her tiny shoulders. It's always been a challenge to get her to be a silly care-free kid.  Now, knowing all she does... seeing all she has seen and continues to, it has made her even more serious.  It's our constant mission to get her to just have fun and not worry so much about doing everything perfectly. Just to lighten up a bit.  We do have breakthrough moments, but she is who she is.  She has always just been so easy.  So incredibly easy. Such a kind soul.

Two nights ago, Kayla hit her highest weigh yet! 40.6 lbs!!!!  Her cheeks are full and pink. Her bottom no longer hurts when she sits on a hard wooden stool or chair. Her hair is a little over an inch long and is dark! It's the softest hair I have ever felt.  I know I posted that Kayla had finally started piano lessons.  I just have to brag a little. Her teacher told us on Wednesday at her 8th lesson, that in the 34 years of teaching she has never had a student pick up and retain music like Kayla. That she only has to show her something once and she's got it!  I am so incredibly proud and happy to hear that not only is she loving it, but that she is really good at it too!  Happy Happy momma!!!

Have you all noticed all of the St. Jude banners and commercials? When I am online, I am amazed at how many companies have it displayed. I LOVE walking into our local stores and being asked if we want to donate.  I wish it was all year long.  It costs $1.9 million dollars per day just to open their doors.  If it weren't for those doors opening every single day, Kayla would not be doing as well as she is today. No other hospital treats the entire family and does all they do to keep your mind focused on life AFTER cancer.  No other hospital gives families hope when other places utter the words, "we recommend you go home on hospice... nothing more can be done". I have witnessed many, many families who were told that they should just take their child home and make them comfortable... and after coming to St. Jude are still alive today. I have always donated here and there to St. Jude before this. But never regularly.  Denny and I decided that we need to make that monthly pledge. We have seen first hand how much those donations do and we are eternally grateful for the research and all they do for families facing this terrifying disease. We became a Partner In Hope.  It's easy and is less than the cost of a pizza! I can donate one pizza per month to help keep those doors open. I cannot even imagine how we would have paid for all of the treatment she has had and the check-ups to come. Insurance only covers a portion and there is a catastrophic max.  Denny, Anthony & I will never be turned away by a doctor because we have met our max. Thanks to St. Jude and donors, we know Kayla will be in the best care possible... forever.  We have too many friends still there. Still fighting.  Still hoping to be home as a family one day too.  So with tears in my eyes I want to say THANK YOU. Thank you. Thank you if you are asked if you want to donate by the lady bagging your items at the check out counter and you say YES.

This Thanksgiving, I am just so thankful for where we are today.  So thankful to be a family of four at home.  Decorating a real Christmas tree.  Spending Monday-Friday taking the kids to school and working on homework instead of watching Kayla get sedated for Radiation that would penetrate her brain and spine every day. Still not knowing what future side effects will be in store because of the havoc that treatment will cause. I am eternally grateful for normal days.  I will never take them for granted for as long as I live.

TWO GG's and cousin Jessie. Thanksgiving evening.

 Christmas tree shopping makes you giddy!

In the air with JOY and excitement for this much needed do-over

Kayla's next scans will be January 9th and 10th. So far, she's doing great and is showing us no worry signs. Please continue to pray or light those candles. Thank you!

One year later.

Wow. I can't believe it's been a year.  When I sit here and think about all that has changed in my life I am flooded with so many emotions.  My heart is filled with so much pride and gratitude.  I am so incredibly proud to still have a loving family intact after all that we have seen.  I know that many families do not make it in the end, so I am very proud that we have actually become stronger. I am grateful for our amazing Kayla Rose family and how lucky we are to have had you all to lean on, share with, and vent to.  I am proud of Denny for being the incredible father and husband he is.  My rock. Always!  I am proud of my St. Jude families for their continued efforts to fight for a cure.  I am especially proud of my friends who have lost their little ones this year. I am so proud of them and how each of them has chosen to honor their warriors. How they still refuse to never give up this exhausting search for a cure so no child ever dies from this horrible disease.

Today is Veterans Day.  Today is a day we honor those who serve our country. Those who put their lives on the line to protect our rights.  I am choosing to also honor a few friends who never got the chance. To honor these special friends who died just trying to live.

Sheyla.

Carter.

Wesson.

Jessie.

Too many friends are still fighting.  No matter what your religious belief, I ask for "prayers".  Please please pray or light a candle for our little friend Matthew who is still fighting very hard. He is so very very sick.

Much needed hugs from my big brother. I missed him so...

Also, please pray for Ryan.  He is 7 and at his very first scan post treatment, they got the horrible news that he had relapsed from Medulloblastoma.  There is no cure now.  He doesn't have long to be with his precious family.

Also, for our other fellow Medullo fighter who has once again relapsed. Please pray that there are more options for his cure.  Sam just began college this year and deserves a long and happy life!

Sam. 

Nevaeh.

Nev just started 6th grade here in Novato.  This amazing girl just went through radiation and is now going through Chemo following three separate brain surgeries. Nevaeh is being treated here locally at UCSF where Kayla had her surgery. These next few weeks of waiting to see if there was any tumor growth are torture for her Grandma who is now raising her and loves her like she is her own. I love this family and this little girl. She remains very strong and positive! Please send good vibes and prayers their way.

Today, one year later, we are celebrating all the blessings we have at this moment. I just feel so grateful to be able to be doing what we should be doing today... Laughing. Smiling. Playing outside. Living.  I have already hugged my kids 100 times today.  I won't stop. Ever. Today, one year later, I am not pacing the floors of my house with my one hand gripping the top of my head while the other is taking and making calls searching for hope and feeling completely helpless. Today I did not hear the words from a neurologist, "you can either go to the emergency room or wait three days until Monday to make and appointment for brain surgery.  Your choice." Today my little girl does not have a tumor in her brain.  One year later I am not in one room sobbing my heart out one minute while in the next minute walking in the other room to face my children with what ever smile I could muster at the time... praying they couldn't see the fear and pain in my eyes.  One year later, we celebrate being alive and all of the blessings this lesson has taught us.

Kayla continues to amaze us with how well she is doing.  Her weight is just about where it was when she first started showing signs of getting sick.  Her cheeks are fuller.  Her skin just radiates health.  She is eating just about what her brother is, which is a HUGE leap from where she was only 4 months ago.  She has had a relatively head-ache free month with little to no nausea.  She is still taking her Zofran morning and night, but luckily that's it!

                                            Kayla and her Nana's dog, Sasha

The kids are in a running club twice a week before school.  (Not that Kayla really needs to be running... but gaining muscle at this point would be great!)  They love it!  Anthony amazes us at his speed.  This week he ran 3 1/4 miles in about 40 mins. Just incredible.

Kayla started Piano lessons last month and is loving it! She had been asking for years if she could play and it was never the right time for one reason or another until now.  Watching her play now makes me so proud.  She really is good! Thank goodness she has loving grandmas who are helping to make this possible right now :)

October crept up on me and was over all a pretty emotional month.  The days leading up to Halloween were tough as the memories from last year flooded through me. The father daughter dance. Trick-or Treating. The change in the weather. Once the holiday was over, I did feel so much relief that we got to have our first official do-over. So much relief that it was not at all like last year. We kept it very low key which turned out to be just what we needed.

               Hotel Transylvania inspired costumes for the father daughter dance

Audrey, Kayla and AJ dressed up as "Marty" from Madagascar 3 and Maggie was a great Dorothy

This month, the new St. Jude commercial titled "bedtime" has started to air on TV.  I don't have a way to share it here on the blog.  I was given a disc by ALSAC but there is no way to share it and it isn't on their website yet. So I hope you all get to see it!  Also, the calendars have been sent out to all of the Partners in Hope members.  Do you know what being a partner in hope is?  It's a pledge of $19  per month that you donate to St. Jude. You can't believe how much this helps.  It costs SJ $1.8 million dollars per day just to operate.  If you are a PIH, you will receive a holiday card (in addition to many other wonderful things).  Just before we left,  Kayla participated in this incredible way to say thank you to all of the donors who make St. Jude run. 

Also, there have been several Kayla sightings at the San Diego airport from our first time working with ALSAC for the Thanks and Giving campaign.  So, if you happen to be traveling, look for her beautiful picture!

Here is a message I have to share with you all that I received from a friend this morning:  "Sending you, Kayla, Denny and AJ a big hug today. What a difference a year makes. Here are the things that have you have taught me: knowledge is power, listen to your body whisper so you never have to hear it scream and I continue to follow your friends and their babies from St. Jude's - I never turn my head even when one earns their wings and it breaks my heart. We owe these families, doctors, nurses and researchers our awareness. We owe Kayla our awareness. For this I only have you to thank. Lots of love - Rachael"

To those of you who have read my words, followed our story and followed these stories without turning your head... thank you! Cheers to a truly NEW year.