Sunday, September 30, 2012

Back in Memphis- 1st Scans

It's been almost 11 months.  Here we are. Right back where the journey through treatment began.  Only this time when we got off the plane, our hearts were lighter. Our smiles brighter. Our laughter louder. Our appreciation greater.  It's an incredible feeling to be on this side of the fence for now.  To enter the gates of St. Jude for a check up and not because we have treatments ahead of us is such a joyous feeling. Of course we are not in remission yet, but we just know we will get there. We just know that this journey will not be in vein.

The better part of today was tracking down a rental car. For some reason, I had thought that the car rental place closed after we arrived so we went ahead and scheduled the St. Jude courtesy shuttle to pick us up. Little did we know, Enterprise actually closed 4 hours later. So, this morning was spent trying to figure out how to get back to the airport so we could get a car so we could have a little fun on our one free day here.  Lucky for us, a big tip goes a long way and we were able to hitch a wonderful ride back.  Ahhhh... back behind a wheel. Those who know me know, I love to drive. I have to have this little bit of control. Heck, it's not like I really have much else that I can control right now, right? So, we drove away in a brand new ford focus and hit the road toward Graceland. We thought we would get an early start since Graceland is just around the corner from the airport, but this wasn't the case at all. After spending almost an hour in line, we were told that there is NO entry without viewing Kayla's hospital wristband. SERIOUSLY??? Ok, so back to the hospital we go. We didn't get one since our first apt. is technically tomorrow morning. But now Kayla had Elvis on her mind so off we went. By now the drizzly sky began to get a little heavier and we realized that the one thing this Cali momma forgot to pack was an umbrella. Oh. And I only had flip-flops. I know. I know! Still, onward. The day is slipping away!  Once we got to the hospital, we saw a few friends and it was like heaven seeing their faces again. We found out that our friend, Dakota is going to be able to go home soon! He and his momma lived on the same floor as us at the Target House and have been at St. Jude for way too long. I will say this, St Jude Hospital has these very "comfy" leather couches in their main entrance.  That being said, when you can easily take a nap on the couch in the front lobby of the hospital, you know it's feeling a little too much like home! ;)

Ok, so finally we arrived at Graceland. Again.  This time with a hospital bracelet. Of course, this story can't end that easily. Because we haven't had any appointments yet, the date on the bracelet read July 5th (the day Kayla checked OUT last).  Well, Graceland's rules are that the bracelet has to be from one month prior. (this is so that St. Jude families are allowed to tour the beloved grounds for free) OMG. It's JUST Graceland!!!! I was seriously about to call it quits but we had one last call in for a favor to our favorite girl in registration at St. Jude. After they had to fax our schedule to Graceland, we were allowed to enter. I can say, I am so glad that we got in for free. By this time, Kayla was completely over it. She melted down refusing to have her picture taken. Continued to melt down when my back pack was searched. And she really lost it when she was told she had to wear a head set for a self-guided tour.  I wanted to turn around and just leave but after all we had gone through to get there, we just held our breath and hoped it would be worth it in the end. It was very interesting. I took a lot of pictures so that if you never make it out to Memphis, you can at least see what Elvis's house looked like through me.  I can say without a doubt, that visiting St. Jude and having a tour there is a million times more life altering than touring Graceland.  I love Elvis too, but green shag carpet only goes so far. haha!

 Elvis kept the upstairs private... so it is off limits for the tour too.
 REFUSING to wear that head set. Well, it's probably filthy anyway! ;)

 To think this was in-style! Wow...

 YES! That's green shag on the ceiling as well. Wow.  I know!!!
 This was an odd one to capture. This is me looking up at the ceiling as we walked down the stairs (mirrors everywhere!) Yikes. And this was a "party house". Nice!
 Bright yellow leather counter bumper.
 This is where Elvis had a little too much fun. I can't imagine why.

 Look at this FABRIC wall. Crazy huh? I bet there is a lot of dust in those folds. Eeeek!

 The "jungle room". Priscilla's favorite chair. I bet the green shag was all the rage!

Ok, there ya have it. The big tour of Graceland. If you ever come to Memphis, skip it and head straight for St. Jude. I promise it's not only free, it's life changing. Be sure and look up towards the big research tower. The lights are always burning. Not because they like to waste energy, but because they are working up there. Non stop. Searching for a cure.... never stopping.  Never turning a patient away because they can't pay. Never ever giving up.   Tomorrow, our fun ends and our busy schedule begins. We can't wait to give Nana the tour of the hospital. Now that is a tour worth money!

Friday, September 14, 2012

Keep your chin up and keep walking

As the 3rd week of school comes to an end I am finally starting to feel like I have a little ground under my feet. To say the past few weeks has been a tad overwhelming is not really an understatement.  Most of us with kids find the first few weeks of a new school year hectic as we get back into the routine of adding early bedtimes, early alarm clocks and a bit of rushing to make it on time a bitter-sweet transition.  The lazy days of summer are behind us and I am so incredibly grateful for the 45 days of down time we had after coming home. Boy did we need them!  I am amazed at how much we crammed into those wonderful 45 days.

How is Kayla? It's a question I am asked multiple times each day. (Thank you to all of you who truly have a special place in your heart for our wonderful girl!)  Kayla is doing pretty well! Her body is growing healthier each day.  We even battled our first cold and might I say she clobbered it!  I was so nervous not knowing how long it would last or how bad it would get, and I think we really lucked out with only one missed day of school.  Either it means her immune system is stronger then I think, or we were lucky. I have a feeling, we were lucky. Whatever it is, I am so grateful it was not worse!  Kayla's hair is growing in dark and straight. It is SO soft. People love touching it and so far, Kayla does not mind. I find her constantly rubbing it herself. We think it feels just like her kitty Meow-Meow.  Kayla's lashes and brows are long and dark. Just the way mommy remembers them.  As far as her weight, she is still hovering right around 37 lbs (which is still about 4 lbs less than Anthony).  I could not be any prouder of her efforts.  Her appetite is constant. Her belly is for sure growing in capacity.  It is good to see! Kayla has always been on the petite side continually measuring in on the 25th percentile for weight in her yearly check-ins.  What I do notice is her color. She is looking SO much healthier.  Her cheeks are fuller and she is starting to look more like Kayla again. Kayla came home yesterday and said that one of her class mates paid her the nicest compliment. I asked her what they said of course. She said, "Mom, so & so said they could see a little fat on my legs! I was so happy! Isn't that the nicest thing?"  Can you imagine??? I think I would have to plow someone over if they said that to me... but to Kayla, that made her day!  So far, academically, Kayla is right on point with the other kids in 3rd grade. She is moving along nicely with them and is reading at her level. This is such a testament to St. Jude for really taking care of our family in every way they could. Just amazing.

Denny finished his CNA course on Wednesday. It was no surprise that he passed the test given in class and will now be able to take the state exam on Oct. 4th. I hope it opens a door that gives us health benefits soon.  That would be nice! Being the only one working is a new challenge that I have never had since our marriage.  I have to say, it's been very nice the past few days having him around more again.  What a change it first was to go from hardly seeing each other every week to being inseparable 24-7 for 8 months. Then to come home after this war to be separated again!  We are both trying to process all the changes and this new normal and find ways for ourselves and each other. We just celebrated 11 years married on Saturday. I am just so grateful that we are actually closer now than ever. So many couples split when tragedy strikes the nest. Not us! We found strength in each other.

I am still putting one foot in front of the other. The tight rope is thin, but I'm on it still.  I have faith in this path that has been put before us.  I know we cannot change the past but we can just keep moving forward and continue to be grateful for each day... for each breath.  Grateful for friends. Grateful for the love of strangers and the strength to keep moving on.
 Lately I find myself with very mixed emotions on our upcoming trip back to St. Jude.  Anxious for the scans? A little. Mostly right now I am looking forward to it.  I am looking forward to seeing familiar faces.  I am looking forward to being there just to check in and not be going through treatments.  Mostly, I am excited for us all to have a good dose of the St. Jude reality check!  There is NO place like there to put life back into perspective.  You walk through the doors, look in any direction and are reminded of not only how precious life is but how lucky we are. Lucky that we have made it this far. Lucky that Kayla is still with us. Lucky that it wasn't worse.  You just never know. Life can change in the blink of an eye. So for every day, I am so grateful.

The beast strikes again.  Yesterday, we lost a very dear friend to our family. Pastor Marcus Hess. He was such a comfort to us as we went through the emotions and the fear in the beginning of all of this. He was there for us as we needed him. Never ever making us feel pressure, but just there for us to talk to.  I was very honest with my fears and my emotions.  Just such a great friend who we will miss.

10 Months ago almost to the day, these pictures were taken. It was the night before Kayla's brain surgery and he came to visit and pray with us. Healthy. Happy. Full of love, compassion, wisdom and strength.

And my personal favorite.... This beautiful picture was taken the night that our friends held a fund raiser for our family in February. Just 7 months ago. I will never ever forget the strength and compassion he showed my mom during the toughest time in her life.  What a gift he was to our family.  He will be missed by everyone who was blessed enough to truly know him.

Cancer is a beast. 

Only 12 months ago we were here:

Only  7 months ago we were here:

I am truly sorry if this hurts to see. Just imagine being in our shoes.  In only a second your world can be turned upside down. It can happen to anyone.  Please help spread the word that we need a cure. Please don't be shy about it.  I know this is hard to see... but it is real.  46 mommas will find out that their child has cancer today. Tonight 7 mommas will be numb with the loss of their child due to this unstoppable monster.  I have said it and I will say it again and again until we win. WE NEED A CURE!  This is September. Childhood Cancer Awareness month. If you can, please please share this blog.  Share Kayla's story. Help another family know that they are not alone in this war and that there are people who will never stop searching for a cure to this disease. 

Currently, here we are today:

This is our forever reminder of the battle our precious girl fought. "Will it grow back?", people keep asking.  No. This is due to the final radiation boost given at the tumor sight on day 31. You can see the thinning at the top as well. Is it just hair? YES! Do we still have her here? YES! Do I hate these physical reminders? ...... Yes.
Full of love. Full of laughter. Still full of FIGHT!  I will never ever stop until no other person has to suffer from this evil and aggressive disease.

It's still a process and she has a ways to go yet, but I am so thankful to God for where she is right now. As I look at Kayla, I see so much life in those eyes. So much love and so much to be grateful for. I feel blessed to be sitting here on my couch writing in my journal right now in our home. Kayla has already touched so many lives and I am grateful to be a part of her story.  Cancer will not define her, but I know that it will be a major piece of the puzzle that determines her future.  I continue to pray that as a family we can use the lessons we have learned and the challenges we have faced to help Kayla become the woman that she was created to be.  Her life might not be the normal path we dream and plan for our children, but she will do incredible things with all she has learned.  She already is.

Here is Kayla's latest piece of school work that I just had to share with you all:

Kayla's perspective.
Stunned at how much detail went into this. You would have to have been there to realize just how accurate this picture really was. From the green nightgown with stars that I trekked to target for the day before St. Patty's day, to the outfit that dad wore constantly while inpatient, down to the crocks to the left side of her bed.  You can even see the pole with the chemo hooked up to her line. The funniest part was dad's bed stretched in-between the parent room and the child's room. Truly, he was in-between and never far from her... except while watching True Blood apparently. HAHA!

Thank you again to all of you who continue to help us to stay strong. We love you all!