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.

Day 5 - Results!

Thank you to all of you who continued to pray, light candles, or do what ever you have done. We got the ALL clear today!!!

Kayla's cuff removal when as smooth as it could have possibly gone. We have a small bandage covering the site for now and will have to keep it dry for 10 days. A small price to pay to have the plastic cuff that resembled calamari finally removed once and for all.  

Luckily, Kayla's lumbar puncture went just as smoothly. It only took one stick and her spinal fluid was CLEAR.  I am so grateful that we can once again exhale. We will be returning back to St. Jude in 3 months to do this all over again.

This is Kayla and I about to head back to the OR. Sleeeeeeepy time! :)

Today, I met one of the most inspirational people ever. Adam Long. It was an honor to meet him and a blessing to tell him in person how incredible I think he is.  If you want to read an incredible article, click on this link:  http://www.stjude.org/the-fighter

Kayla was so inspired by Adam's bravery and positive attitude.  So am I.  So will all of you, I just know it!

Tomorrow we will board a plane and head home. Cancer free for now! Blessed forever. 

One more bit of good news, Denny PASSED his CNA test! He is now officially certified... we are so very proud of him. Way to go!!!!

Day 4

The alarm went off early this morning that's for sure. Kayla's Spinal MRI was scheduled for 6:45am. and yes, we were on time!

I have to say, I am so proud of Kayla. She is just taking all of this with so much pride and grace. She continues her eagerness to please every person she encounters and is just such a joy to all who get to have her as a patient. I am told over and over how well she did and how much they love her.  Of course I love her, but I'm her mom! It's so sweet to hear people reassure me that she is indeed special. Not just in her momma's eyes. God, I love her!

The only real news I have to share from today is that there was ZERO change in her audiology exam. She still has the exact same "minor" high pitch hearing loss in one ear. We are all thrilled that this has remained stable.

Kayla does experience frequent ringing in her ears. Here she is learning about how and why that happens.

Look at this audiology equipment

I can't believe I am admitting this in writing... I allowed Kayla to play hooky today on psychology.  She was so upset about having to go for another 3 hours today. ( I think I forgot to mention she did 3 hours yesterday?? )  I would insist on it if it gave her coping skills for life after treatment, but for whatever reason, it does not.  It's more about how we act as a family.  For example:  "When we argue, do we throw things?" "How often do we do outside activities as a family?" etc.  Also math questions? Ugh. So frustrating. How does SJ miss the mark on this one??? I guess they need this for their research, but I strongly feel this just does not pertain to us as a family.  I wish they did offer coping skills though. THAT we all could use.  So, I did. I let her bail.  Call after call I ignored. I know... BAD mommy. But she needed and wanted a break. I happily gave her one! Instead, we headed on over to Mud Island to enjoy the gorgeous weather. We got out and walked all around. It was a lovely break in the day!  Now that is psychology. ;)  

                                    Enjoying the sunshine at a park we found on Mud Island

Now, here is something to make you chuckle (or for some of you, cry).  I finally got to take a picture of the Memphis Recycling Center.  Yes, this is it. I promised a few people I would try and take a picture.  Here you go! (the top of these huge trash bins read "Recycle Memphis")  Crazy, huh?!

Tomorrow Kayla will have her two final procedures before we meet with her Oncologist, Dr. Gajjar.  At 8:30 Kayla will get her "sleepy medicine" happily and be wheeled away for a painful Lumbar Puncture. Ouch! This will make sure that there is no change and that her spinal fluid is still free of any nasty cancer cells.  While she is sedated she will also have the cuff from her old double lumen line removed. The docs have agreed that the skin is not heeling over it the way it should have so it must come out.  We are all happy about this being OUT of her body once and for all. Some hospitals remove it, some leave it in. To me, it is a plastic foreign object and should not be left in. Kayla's body agrees with momma on this one.   So, while she is asleep, the plastic will be pulled away from the skin where it has attached and she will be carefully closed and let to heal... finally!  We look forward to that!  

Tomorrow is also a very big day for someone else. Denny will be taking his CNA certification test. It will last all day and he will get results immediately when it is over.  I just know he will knock this out of the park. He is a rockstar.... just like Kayla. :)

I promise to post news as soon as we know anything.  Thank you so much for all the love, prayers and constant support you show us.  It means so very much!!! 

Love, from Memphis

Day 3

So, today we had a little bit of an unexpected occurrence. It's not a huge deal... but if you know Kayla, it was kind of a huge deal.  No one informed us that we would be getting an IV while here for check ups. Needle poke? Yes. And she proved to be a trooper! But this was a shock. I don't ask many questions or doubt much from the medical team here, but usually they give us the heads up. Believe me, I will make sure I know what to expect for all future visits from here on out. Kayla does not do well with the unexpected. We were blind sided, but there was no way around this IV.  Today, Kayla's MRI was a contrast MRI. Duh. Of course it was. It's the most through and accurate. Of course she needed an IV for that! Now I know.... Sorry Kayla! ;)

All appointments went well. She even gained a few ounces from yesterday. Memphis eating has been good on her! (not me or Nana though!)  Kayla scored very high during her psychology review.  We ended the day at 3 pieces of cake. Not me! Kayla!!! Yep, you read that correctly. THREE pieces of cake. Carrot is her new fav. At least she got some veggies in there, right?

Nothing like a little cake to take the pain away. Love her!!!

I'm just a little unsure as to how she is going to sleep with her arm so darn stiff...... 

This does NOT look comfortable at all.

The clouds cleared away over night and we were left with bright sunny skies and perfect weather all day long. Too bad we didn't really get outside much to enjoy the glory of it today.  Tomorrow we start at 6:30am for the Spinal MRI. Eeeek. We are getting closer and closer.  No new updates on Matthew today, but I thank you to all of you sending loving thoughts and prayers their way right now.  Today was Wesson's memorial service. It was a hard morning here as I couldn't get my friends Kristi and Logan off my mind. I just miss seeing them here.... It's .... just not ok. :(

A perfect example of "not ok". How do you go from this one day... to this just days later? Oh. That's right. Cancer. The first pic is my favorite of Matthew and his daddy. He is fighting for his life as you read this. Please please send love and prayers their way. Please?! Aimee & Ron, we will never stop hoping... ever. Love you guys!

Wesson, you will NEVER be forgotten.  It was not the cancer that took him. It was the treatment ....  RIP buddy!  We need a cure..... yesterday.   

I know this is hard to read. Hard to look at. Imagine being their parents.  Cure. Cure. CURE! Thank you to those of you who help us fight and spread awareness. Love all of you!