One Year. Part 2

How has it already been a year since we returned home? Yet, when I think back so much has happened. The biggest was selling our house and the crazy aftermath that ultimately led us to our new home!  Leaving the house we bought when Kayla was only 6 months old was tough, but a necessary step for our new start.  Actually, looking deeper into it, most of my St. Jude family friends have either since moved or are pregnant.  Yep, moving was the right choice for me! haha!

Our new house is nestled on a quiet flat street. There are lots of kids and awesome families. One of the best parts is the freedom to be able to ride bikes out of the garage to local parks and schools. It's great!  We are settled in and taking it slow.  It's just nice to be able to breathe after all of these months and feel at home.

Summer has been quiet.  A good kind of quiet.  I am busy at work again finally.  It took a good year, but I am finally booking up again.   Anthony will be starting soccer on Thursday.  He is very excited! Kayla will be able to practice with friends teams, but we all decided it would be much too much on her to play in games. This league is so much more competitive. Not only has she lost a year, but she still has trouble with endurance and strength.  The last thing I want to do is to hurt her ego.  She has been doing so fantastic.

We are preparing for scans again. I know! 3 months goes by so quickly.  This time, our friends Carolyn and Audrey will be joining us.  I am so glad to have a friend go with me. Kayla can't wait to show Audrey around St. Jude and the Target House.  I will update you all as time gets closer. The schedule this time is the lightest yet. We arrive Aug 10th at night. We have all day Sunday free until 4:00pm when we check in.  The MRI is scheduled for Monday the 12th at 6:45am. Kayla will have PT and and appointment with Endo to see how her thyroid is doing. I haven't measured her, but she looks to me like she really has grown!  I hope the measurements prove me right.  We will spend Monday night getting pending MRI results off of our minds as much as possible. Tuesday we should get results at around 9:30 am and we catch a flight home 2 hours later.  Hopefully it will be short and sweet with nothing but continued good news to share.

 Kayla and Nick. She is really missing him this summer!

Fun days doing the rides at 6 Flags

 First Piano Concert! 

 Beautiful Burrito Belly! Cali burritos are the best ;)

Beating the heat with buds in Sausalito

 4th of July morning run

I have a dreaded update to share.  One of Kayla's BFF's from St Jude has relapsed. You all remember Angiel?  She had osteosarcoma in her leg.  This week she had her routine scan and they learned that the cancer has returned in her spine.  Angiel has been such a trooper. She is one of the strongest girls I know.  When Kayla had no appetite and we were struggling the most, it was Angiel who would try and encourage Kayla to eat just one bite. Just to try.  We spent many many hours playing games and hanging out as families. I just know that when I gently explain this devastating news to Kayla she will be crushed and scared. Angiel has started Radiation. This just breaks my heart.  As we know, St.Jude will do everything in their power to make sure Angiel becomes cancer free again.  As you can imagine... it's been a tough week. 

So please light a candle or say a prayer for our special friend, Angiel. Thank you! 

http://www.stjude.org/stjude/v/index.jsp?vgnextoid=508436af477b7310VgnVCM100000290115acRCRD

One year. Part 1

Oh dear blog. Wherever have you been?

Just know that I have missed this as much as any of you.....

I have been sharing my laptop with den because of school but am happy to snatch it now because he is asleep! I need to do this more often, I know!

So much has happened. So much. Where do I start?

Kayla, of course!  She is doing fantastic so far from what I can tell. If you saw her today you would never ever know she was so sick not so long ago. Her hair is growing in (she is sporting the odd bi-level haircut that was intentionally given to me in the early eaaaarly 80's) It started out brown and now has flicks of a true honey color running through it.  It's still fuzzy even though I have made every effort to cut off the fuzzy ends. It will surely take time to get it to a regular hair status.  But who cares! Right?   It's so great to watch her Thriving. Running. Playing. Laughing... Living!!!

I miss writing daily. I miss it.

Kayla's Make-A-Wish was good!  We had a wonderful time away and yes, I actually was able to forget for a little while about cancer. That was my personal goal.  Kayla was surprised that Hawaii felt so much like San Francisco. I think it's because they sent us to Oahu.  It's the "city" of Hawaii.  And man is it busy!!!! It felt a little like LA.  We spent almost 90 mins in bumper to bumper traffic to get to our Luau.   Not quite what we remember from our trip to Maui 7 years ago.  I guess this is the busy island.  We were in Waikiki.  Right in the hub of all the shopping and tourists. It was busy. Very busy. She was able to kiss and dance with a dolphin but was not granted the "swim" she really hoped for . I know... believe me... it was a tough day.  On her 9th birthday she was scheduled to swim with the dolphins at sea life park.... or so we thought. We showed up and followed our M-A-W directions. One of them being that we were encouraged not to change any reservations as to not upset any of these amazing donors. I get it! And they are amazing....  But when my kid is crying (ok... sobbing) on her birthday because she didn't "get her wish" I was shocked that not one single person there asked if I could chip in to get her the swim. I would have happily paid out of pocket.  We were there on her make-a-wish to swim and she didn't get to do it. A kiss is great. A good photo-op... but that was not her wish. I don't know what to do at this point. I guess we will have to contact six flags locally and pay for a private swim...   We still had an lots of great memories and if you know anything about us, we make the most of any situation!  :)  One day we will take her to experience the relaxing side of Hawaii. Remember..... she is my little old lady. A true "old soul". She doesn't care about shopping or busy streets.... she wants to sit on the beach and read.... she wants relaxation and quiet. But as a parent, you are not able to give your input with make-a-wish. They take the kids into a room alone and ask for their wish. I know. Kind of strange. Only us parents really know our kids and can help them articulate.  Still, the biggest blessing is that she was able to enjoy this trip cancer free!  My favorite moment was when Kayla got to play her piano piece in front of a world famous piano player who plunked himself in a hotel lobby on the busy strip our last night there. She had the audience wowed... and that made it the most incredible moment ever! I could listen to her play that song over and over again!

 Meeting our pilot! They got to sit in the cockpit until almost take off.  So sweet. 

 That's a turtle!!! Not a rock (turtle island)

Den's Birthday Breakfast

Luau Night- Happy Birthday Dad!

So excited to swim with the dolphins!  Happy 9th birthday Kayla!

Who doesn't love kisses?

Part 1.... it's all I have tonight. I am trying. <3

The Results are IN

It's officially going to be the best vacation EVER. 

Kayla's scans were ALL CLEAR!!!!!!!

When I finally made it home to tell Anthony he tackled me when I delivered the much awaited news. He was so excited and got busy making a special card to go with the flowers he will give her tomorrow. It's so sweet to see how close these two really are.  One more night and our family will be together again. I can't wait!!!

Sunday we will meet with our amazing Make-A-Wish granters to hear all the details that they have planned for us. We can't wait!  Monday we have our home inspection. Yep! Finally... it's happening. Tuesday we will fly off to Oahu. I promise to take lots of pictures.  It will be such an incredible memory for us. 

Thank you to all of you who lit candles at home, churches. Those of you who prayed prayed and prayed. So far... things are looking perfect for our little warrior! I am so grateful to be typing this great news right now. 

Sorry it's blurry... these hands must have been shaking with excitement! :)

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.