And the count down begins

What a wild couple of weeks it has been! A good wild though. This week the kids have had their spring break and we have been sneaking in some fun here around town as much as possible. We have been blessed with gorgeous weather in the low 80's.  We often find time throughout each day to pause and just give thanks. A great friend who has had her own life altering struggles gave me the advice to "just find the joy in every day". We truly are...

In about 2 1/2 weeks, Kayla and Den will head off to Memphis once again.  I get a lump in my throat just typing that.  I just keep thinking that with each "all clear" we will feel some relief. But the agonizing truth is that at any moment our life could once again be turned upside down keeps popping up in the back of my mind. I don't think it's ever possible for it to truly go away.  Every once in a while someone will ask me "When will you finally get to breathe?  When will you not have to worry? When do you stop going to Memphis?"  The answer is never.  Never.   When you have a rare, aggressive form of cancer there is always the possibility that it could again rear it's ugly demonic head.  Stealing what normalcy we have built back up here at home.  We never know, but hope and pray each day that she never has to endure a secondary unrelated cancer, or a relapse of her own.  We pray that she is the symbol of hope to the 7 kids diagnosed each day and the sweet families scared and sobbing on their knees.  Those not knowing where to turn that there is hope. Hope that you can beat this and go on to live an amazing life. I do hear of these stories and they surely fill us with hope!

So Kayla and Denny will return to St Jude for her 3rd follow up April 30th.  Scans will be the 1st and 2nd.  Hopefully after they hear those glorious letters "N.E.D." they will fly back home to us on the 3rd.  The two days in the hospital will be filled.  More needle pokes. More scans. MRI's. and another Lumbar Puncture. She will get  More beads will be added to her Legacy Necklace.  Her endocrinologist will make sure that her thyroid meds are working correctly. Hopefully this time Kayla and Angiel will get to see each other again. I know Kayla really misses her and can't wait to see how long Angiel's hair is now.

The good news is that only days later, we should be boarding another plane as a family to Hawaii on Kayla's much awaited Make-A-Wish!  We can't wait!!!!

This school year is winding down.  Anthony is reading small books.  He is completely off of his training wheels and riding around like a speed demon.  NO fear.  He is doing fantastic.  Also, he has started Tae Kwon Do with the legendary Master O.  It's been wonderful for him!!! We are so proud.

Anthony has also been known to stop the ice cream truck to score treats...

Kayla has continued her piano lessons and hopefully will never ever give it up.  Listening to her play is the highlight of my day. She is a beautiful pianist. I took a video the other night as she was playing so you could hear. This is her concert piece that she will play on May 31st.

Isn't it beautiful? I know there is nothing like hearing it in person... but I wanted to share with all of you special amazing friends.  I am certain that piano is what is keeping her memory so sharp.  This past week, I gave Kayla her very first "mini" trim.  I was trying to cut off the fuzzy ends without losing any length.  It's getting longer and longer!  She wants to keep it short. It does look adorable... I don't care what she wants to do with it.  She has even been known to sport a Mohawk on some days "while she can".  haha! Sure... why not?!

I have noticed that certain things she has trouble remembering. Places we have been. Meals she has previously tried.  Just little things. Even when I give great detail she just can't remember.  As far as school, she is doing fantastic. I mean, with all things considered... I could never be displeased because no one tries harder than Kayla. She is a true people pleaser. Always wanting to do what she is told. Always trying so so hard.

Denny is doing amazing. Given how hectic his new schedule is. He is working full time and this semester was filled with three college courses.  Of course his teachers adore him.  He is always asking questions. So thirsty for knowledge.  Taking every opportunity with each class to tie in cancer research wherever he can.  I am as always, amazed by him. How he still makes time for me and the kids when he can. Needless to say... he has not had time to continue to knit. ;)
 

I have been pretty busy at work.  I am just so glad that going back was like I never left. I am blessed with amazing people who continue to support and love me. They know my new schedule and understand when I might have hard days. 

We are in escrow on a short sale here in Novato.  It has every single one of our "wants" including fabulous neighbors.  Leaving Drakewood was so hard because of the amazing friendship... more like family... that blossomed there. I have to say, nothing has changed. We still see our friends just as much which is a blessing.  We are very excited about growing in a new house and creating new memories.  I am dreaming of paint colors and what flowers to plant where.  If any of you know about short sales, you know that they are not short!  So we are patiently waiting for what is SURELY going to be worth it.  The people who bought our house are SO happy. We have gotten the nicest notes through our realtor from them. It's so nice to know how much they love it there.  When we can update more on the house we will. Promise!

I will keep you all posted on scans and any new changes here. Promise! For now... look at how GREAT our girl is looking!!!! In less than 30 days, she will be 9.  What a blessing that is...

From One Warrior To Another

As if St. Jude weren't already the most incredible place on earth to us...

This week we got treated to one of the most incredible and memorable nights I think I have ever had.  Kayla and Anthony said it was the best night of their lives.  I just feel so blessed to have spent it with three of my favorite people in the world while we were all healthy! That was the icing on the cake.

Last week I got a call from our local ALSAC rep, Meredith.  She let me know that the Hoops for St. Jude campaign is currently going on and wanted to know if we would be interested in going to a Warriors game. The warriors star player, David Lee, had recently visited St. Jude and fell in love with the kids and all that the hospital is doing to save lives.  He was so impressed that he doubled his normal donation.  Since learning more about David, I now know that his best friend is a two time cancer survivor... so finding a cure is near and dear to his heart.  We were honored to be the family to represent St Jude and mostly to THANK him in person.  Meredith told us it would be a fun night, but we were not prepared as to just how fun it would actually be! 

We arrived at the Oracle Arena in Oakland at 4:00pm and were greeted by Meredith and a rep for the Warriors who escorted us in through a private VIP/Players entrance only.  There were security guards standing by waiting for the players to arrive.  We knew exactly which ones were players as they arrived because they had to duck under the door way.  We walked through a metal detector and made our way onto the court through the same tunnel entrance that the players run through at the beginning of the game.  We tried to take it all in because even just that was a once in a life time experience!

 The door in the background says "Players Entrance Only"

Posing in front of David Lee's pic

 Here we are walking down the very private VIP entrance onto the court. SO cool!

Once we walked out onto the court we were able to sit and watch the players and the cheerleaders warming up.  Just thinking back as to how awesome that was makes me smile.  A few of the cooler players made time to come up and shake our hands (I got hugs) and say hello.  Kayla got miked and she was followed around by a videographer and photographer.  They were sure to capture all of the moments.  And there were many. 

 Kayla getting miked

 You can't get much closer than this...

The player in the background(Harrison Barnes) was cracking me up. He was making funny faces in my pics! Love that they were all so sweet to us!

I have a hard time picking my favorite pictures from this night. They were all moments I am glad are captured in time through the eye of a camera :)  They are for sure in my heart forever. 

Just when this was getting too fun, we were brought out special gifts. All of us! Kayla and Anthony got backpacks filled with warriors gear. Shirts, hats, key chains, necklaces, cups and more. So so soooo generous and cool of them! Before the excitement of their gifts could even ware off out came David Lee to meet us. All I can say is WOW. What a NICE guy! Such a sweet heart. He had big hugs for all of us and insisted we come back for a private tour of the locker room and more. We got to see where the guys get taped up, ice themselves, and I even accidentally saw someone in their underoos. Oops. He didn't seem phased at all.  Everyone was all smiles as David brought us back into meet his coach.  We saw the dry erase board and all the cubicles where they strategize during the game.  It truly was a once in a life time moment. I wish I had more pics from that part.  David brought us over to his locker where he presented a ball that he autographed for Kayla and a jersey of his that he autographed too! Pretty awesome, huh? Kayla's favorite part?  Autographing a St. Jude Tee-shirt for David . She really loved that part!

Serious Warrior fans for LIFE

 Anthony took this shot... we do LOVE St. Jude

 Finally we got to meet our new favorite person... seriously. Such a sweet heart! All 6'9" of him

 So much in common. Not only is he a Taurus and a Warrior... but he's also a LEFTY like Kayla!  Love you DL #10  :)

 This is where the players get taped up pre-game or looked after if they get injured

 Work out and pre-game stretching goes on here

 "Thank you for donating money to St. Jude  Love, Kayla Rose Dehnert"

Following the amazing meet and greet, we got escorted to a VIP dinner where we got to meet the chef!  After taking us through each and every dish he created (buffet style), Kayla requested Buttered Noodles.  We all laughed... except Kayla. She was dead serious. So, guess what? They whipped some up from scratch for the VIP girl.  Even Anthony got his requested hot chocolate!  All was delish, but we were anxious for the game to begin.

We made our way back out onto the court and Kayla was quickly ushered away by a warriors rep.  She was made honorary captain and got to stand out on the court next to David during the national anthem. What a wonderful moment!

We watched and cheered as it was a VERY close game the whole time. 

 Just as the first quarter ended, we were surprised and pampered yet again with snacks galore 

courtesy of the Warriors

Ultimately the Warriors won and our girl CONKED out.  Not Anthony.  10:30pm? Nope. Not him! 

What a wonderful night for these Warriors!!!

So much has happened over the past two months that my head spins when I try and recall it all.  Long story short, we sold our house!  With all that has happened in our lives since all of this began, we have realized that it's time to simplify.  We dream of a smaller house located closer to school.  When we moved into our house on Drakewood Place, Kayla was only 6 months old. We have had so many memories there. Mostly good.  It will always be "home".  Now it's time to find our next place where our journey continues.  For now, we are in a very cozy apartment (month to month) that reminds me of a carpeted Target House. Oh and minus the security guards, amazing FUN activity rooms, elevators and emesis bags. 

I have missed blogging.  It's been such therapy to me during all of this.  Kayla has been continuing her piano lessons. She truly is good!  I cannot wait until her recital. I promise to post the date/time so that if any local friends want to come and cheer her on they can. We would love to have as many people come as possible so stay tuned!   Kayla's next scans are at the end of April.  For now, we are just happily doing the grind. I like the grind. This new normal. I hope it never gets interrupted again.

Please say a special prayer and or light candles for my former co-workers daughter Amanda. She is 15 and has been diagnosed with Hodgkin Lymphoma.  Since I last blogged, two amazing warriors that I knew personally gained their wings. Ryan and then Matthew.  These boys were amazing and they are missed terribly.  I do know their parents... and these boys lives will not be in vein.  Their legacy will live on. Their momma's won't stop fighting to spread this awful truth. Neither will I.

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!!!