Sunday, April 28, 2013

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. 

Thursday, April 11, 2013

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...