Day 1 - Pins and needles

I hate waiting.  I mean, usually I can be a very patient person. But for scans that are life threatening, I think you should be notified immediately.  It's just the compassionate thing to do. Grrrrrr. Just saying.

Yesterday Denny and Kayla arrived safely in Memphis.  They got set up in their room at the Grizzly Hotel and ordered dinner to be delivered.  Unfortunately, Angiel's mom was feeling a little under the weather so they decided to postpone their visit until tomorrow night.   Den woke up at 4am to register for his summer college course, Biology.  It will be a very very busy summer for him.

The day started at 7:00am.  Unfortunately, Kayla was not so lucky having her IV started again this time.  She was pretty upset as to be expected.  They headed off to the all important MRI where we have been many many times.  The room is filled with new patients, routine scans, and well... you can just imagine.  Last weekend Kayla fought of a fever and still had the residual cough and sniffles. Not only was I afraid to have her fly because of the cabin pressure and her ears, but we fear BIG TIME for the kids with zero immune system. Kayla agreed that she should wear a mask when around any kids.  Luckily, she gets it.

Kayla was excited to learn that after her MRI, she would be able to go and see a magic show. There was a world famous magician visiting for the day putting on a spectacular event for the patients and families. Only at St Jude.

Her audiology exam went great. So far, she is stable! This is great news!!!

In the Endocrinology appointment, we learned that she only grew 1/2 of an inch instead of the previous trend of 1 inch.  They will keep a close eye on this. I won't go into to much detail because I don't want to worry anyone or myself. We will cross that bridge once and IF we have to.  

During Speech, Kayla scored off the charts. She was ranked 20% above her peers.  GO Kayla go!!

After the appointments were over she got to see lots of old friends, ALSAC staff, her teacher Michaela & Miss Theresa. It was a very busy day. There is a large print that we will get to take home from her Thanks & Giving campaign. I can't wait to see it! 

Tomorrow another MRI is scheduled at 6:45 am.  (4:45 am California time) Ouch! She will also have Physical Therapy and finish with a sedated Lumbar Puncture.  Finally, we should have some results in the afternoon once they meet with Dr. Gajjar.  I will update here as soon as I can. I have busied my work schedule like crazy tomorrow to keep my mind occupied.  For now, I hope my angel sleeps well. 

Anthony and I went on a date tonight. He was the perfect gentlemen. He held doors for me and everything!  We both are feeling a little less than complete right now. :(

With the Make-A-Wish trip coming up next Tuesday, I can't help but think right now that it's either going to be the best timing for the trip EVER... or the worst.  I'm keeping positive and picturing us breathing that deep sigh of relief once again while on the beach for the very first time in Hawaii as a family. 

Thank you for your thoughts, good vibes, candles and prayers.  ALL are much appreciated. 

Preparing for Memphis - May 2013

Tomorrow we will pull out the suitcase and prepare for scans.  My mind is spinning.  Even though every fiber in my being says "she is FINE".  I remember before her very first MRI that revealed a tumor I had no doubt in my mind that there was nothing to worry about....  I remember just wanting to go on with our planned day of a movie with the family.  "Just give us the results so we can go have some fun!"  I pleaded... not knowing how much our life was about to change. 

So yeah. My mind is spinning and always will.

The other day, Kayla reassured me. She said, "Mom.  It's NOT back.  I promise. I am fine."  So I am just clinging onto those words and hoping that she can enjoy her Make-A-Wish worry free. We will celebrate..... OH will we celebrate!!!

After fighting off whatever virus is going around and spending a fortune at Pharmaca, I feel confident that Kayla will be able to enjoy her last day at school tomorrow laughing and playing with her friends. She will be safe to fly and is no risk to the kids at St. Jude with zero immune system. Thank God.  We have been very diligent.  Making her health a priority right now especially. 

Denny and Kayla will fly away with butterflies on Tuesday morning.  Wednesday and Thursday are scans. I will update daily to catch you all up on what we know day to day.  Results will be given Thursday afternoon. I promise to update as soon as I hear.  Then, our family will be back together Friday.  Can we just fast forward to Friday please?????  Or maybe I should ask to just pause where we are right now?  I would much rather pause while in Hawaii on her Make-A-Wish next week!

So for now... I will keep taking deep breaths. Praying. Hugging. 

Thank you for following this journey and being such a huge source of strength to us.  Please keep praying for a CURE. 

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