Results Part 2

ALL CLEAR!!!!! ALLLLLL CLEAR!!!! Those beautiful words that make a mommies heart sing.  I will never get used to the nerves that come along with waiting for the reassurance of NED.

All I keep thinking is, YAY... we get one more holiday at home together. It's one step at a time. Grateful just seems like such an understatement.  But I can't find a more appropriate response to how I feel tonight.

Hopefully today will be the very last time Kayla has to get a Lumbar Puncture.  So no more sedation! That is a very huge thing to check off the list. Den thinks it might be once a year still, but we are going to double check this.

So, I was thinking about all of this last night.  Realizing that Kayla saw 6 specialists yesterday jolted me a bit. Think about that. Getting blasts of information, some critical (and some not so critical) results from 6 different specialists in ONE day.  That's a lot to wrap your brain around.  To think that we did that for 8 months. No wonder. Just no wonder! No wonder everyone is SO exhausted at the end of the day there.

Yes, I'm exhausted. Even though I'm here at home.  My brain has had a lot to retain, learn, and process.  Again.  Working, trying to maintain a normal-ish routine for Anthony and not fall apart is hard. Especially when I can't explain that the knots in his stomach are normal.  He doesn't understand what anxiety is, but clearly feels it. What else is there to do but keep putting one foot in front of the other and smile. We don't have much in this world that we can control, but how we deal with these situations is something that we can.

 This is Miz Jackie!  The sweetest face behind the desk at E Clinic

 Kayla getting ready for her sleepy medicine before her spinal MRI and Lumbar Puncture

 St. Jude has world famous bakers that retire only to find themselves baking for these amazing families and staff. Nothing like cheesecake when you wake up! YUM! Kayla is SO glad to finally be able to enjoy these amazing foods here when not so long ago she couldn't even look at them!

 This is the awesome Miz Ashley. She works for Child Life and brings so many smiles to the kids by doing things like this. Just amazing.

Here is the incredible Miz Michaela. Kayla's Second Grade teacher at St. Jude. She has a heart of gold and if we lived there, we would be the closest friends.  LOVE her!

One LAST hug for the incredible Miz. Theresa - Kayla's CNA (Certified Nursing Assistant) While going through chemo. They have such a great bond. This woman is a GEM.  The BMT floor is lucky to have her.... <3

What's St. Jude without a little celebrity LOVE?  These guys are awesome for coming out and making these kids smile :)

Kayla- Getting Tony Parker's Autograph.  DENNY, YOU NEED A NEW PHONE.  This is so blurry!!! (Thank you for taking it though)  ;)

Finally, Kickin' it in the Art Room!

Good night sweet girl!   Tomorrow you get to play during PT and make them so proud of you for how strong you have gotten!  I can't wait to see you tomorrow night. I don't know if I will be able to stop kissing and hugging you. Mommy misses you SO much!!! Oh, and your cat is a pain in the rear to sleep with! I don't know how you sleep with him every night! ;)

Some Results are in...

Kayla's hearing remains STABLE.  MRI of the brain is CLEAR!

We are still waiting on her Lumbar Puncture and Spine MRI results to be able to claim NED (No evidence of disease) once again!

Lots of pics and a final update to come when I get off of work tonight. Thank you to all of you for your loving notes, prayers, thoughts and candles.

Keep them coming! 

Back in Memphis - 1 yr. 3 months

It's been a long day. Longer than I really expected emotionally. I never can fully prepare myself for this.  Because honestly, each time is different.

Kayla and Denny have safely arrived to St. Jude. The magical walls of happiness and hope have embraced our family once again.

Luckily for Anthony, he got to spend the night at a friends house last night and wasn't up and on the freeway at 4am like the rest of his family! Seriously... I don't know what I would do without my friends!!! Not only did he get to spend the night, but he got pancakes in the morning AND he got to sleep with a flashlight.  It was the perfect distraction.

Driving away is never easy.  This was the first time without Anthony sobbing in the back seat about how scared he is and how it isn't fair.  This was the first time I drove away in silence and it pretty much set the mood for my day.  The bay area was finally getting the rain it's been begging for and I welcomed it.

Tonight, Kayla opened up the letters sent along with her from her classmates. Encouraging letters filled with love and hope! She LOVED them so so much. It was a wonderful surprise.  After reading each and every one, she decided to go and grab a movie from the lobby downstairs in the Grizzly House.

There are no coincidences.

Tomorrow Kayla will have a very long day filled with tests. I am a little confused as to what time her first MRI will be because they changed the schedule recently.  Denny is trying to study and do his homework now that Kayla is asleep and I just don't want to interrupt. We know what is happening. We know all of the tests being done. Please just send lots of positive thoughts and prayers.  I will post tomorrow with how the day went. We don't expect any results until Thursday.  But we will have some answers tomorrow.

Good night to all of you and THANK YOU. I don't know what I would do if I felt alone.... and I don't. So, thank you.

Almost that time... again.

As 11/11/13 (2 years from that first damn MRI) slipped away, I can't really say that I feel any calmer.  Kayla's next MRI is only a week away now. So how can I be calm? How can I breathe when I feel this constant flow of uncertainty? It's in the cool autumn air. Its watching the kids trick-or-treat and having flashbacks of when I knew something was wrong, but didn't know what... yet.

I notice that I watch her a little closer when she's about to have scans.  I look for any signs of change.  So far the only changes I can see are the obvious ones.  The lack of growth in the past year. One teeny tiny centimeter.  Yep! That's it.  Thank you Radiation. Kayla's ears ring a lot when she is in noisy places.  Of course, she has a very hard time concentrating when the ringing is going on.  I notice that her short term memory is starting to get worse and worse.  My once overly efficient and organized child is now replaced with one that is forgetting the simplest things on a daily basis now. No matter what sticky notes she writes herself, it's happening.  The dry erase calendar has helped, but it's still not entirely enough. My heart breaks for her when I watch her get so frustrated with herself. She smacks herself in the head over and over and often cries. She hates it when she forgets things. Chemo brain is what it's often called.  I think the chemo mixed with 31 rounds of full brain and spine radiation is what it is.

This month was a busy one.  Kayla changed schools.  She still loves her old school.  It was such a source of strength for us and love when the walls came crashing down around us.  Now both of the kids are at the same school and boy is that easier!!! Kayla is making lots of friends but misses her old ones too.  I keep reminding her, they are just around the corner!!! 

Next Tuesday Kayla and Denny will make the trip out to St. Jude once again.  This will be her 1 yr 3 month check up post treatment.  Our scheduling team has booked Kayla solid.

Brain MRI, Functional MRI, Lumbar Puncture, Pulmonary, Audiology, Echo/EKG, Endocrine, Psychology, Physical Therapy and ... results. 

Denny asked me again today what's better for me? Being here at home and staying busy with work or being there?  Neither. Three months later, we get to do it again. But she's ALIVE!!!!! Thank you to St. Jude, Dr. Gajjar (oncologist), Dr. Pai (radiologist), Dr. Yamaguchi (pediatrician), & Dr. Gupta (neurosurgeon). 

The plan is for Den and Kayla to fly home next Friday night and the next morning we will do our St. Jude walk in San Francisco.  Have I mentioned it yet? If not, let me fill you in! 

Click here to go directly to Kayla's Team Page

We walk. To help her live.

Kayla Rose

 

November 23, 2013

St. Jude Give thanks. Walk. - San Francisco

Location:

San Francisco Zoo

Sloat Blvd. & the Great Highway

San Francisco, CA

94132

Event schedule:

Registration begins at 7AM followed by the opening ceremony. The walk begins at 8AM. Make sure everyone has checked in and registered.

So, come and join us if you can!!!! I am going to bring a bunch of Kayla Rose T-Shirts and wrist bands to give to anyone who walks with us.  If you can't make it to the walk, but want to help, you can!  Either donate to Kayla's team (click on that link above) or even start a team of your own and ask your friends/families to help out. There are still 11 days to go! This will be the very first time the San Francisco Zoo has partnered up with St. Jude.  I hope it's very successful.  There will be other patient families there as well. I know it would mean a lot to Kayla to have as many walkers join us as possible.  It's early. I know!  They want us finished with our walk by the time the zoo opens at 10:00. I believe they are giving zoo passes out to anyone who has raised $35 or more!  Dress warm.

HUG YOUR LOVED ONES.   More to come soon! 

1 Year Scan Results

First of all, I will not do to you all what was done to me today. I am not going to dilly dally. Kayla's scan results were ALL CLEAR!!!!!  Now, let me begin by saying, this was the most nervous I have been since UCSF.

We woke up early and quickly made it over to E clinic.  9:15 came and went.  I sat in the cheery waiting room at E clinic just waiting for Kayla's name to be called.  It was not like them to be this late with us this early in the morning.  The clinic was empty.  While we were sitting, Ashley from Child Life all of a sudden appeared.  She came and sat next to Kayla.  I didn't really think anything about it at first because she had a release form for me to sign for some art work Kayla did that they wanted to display.  Sure! No problem!  But when she continued to sit next to Kayla and ask silly questions I started to get concerned. She seemed to be trying a little too hard to keep conversation and didn't seem to have any plans on leaving her side.  I had heard many stories from other families at St Jude that were about to receive bad news that someone from Child life comes and stays with the kids so they don't have to be in the room during the conversation. Immediately that thought came to my mind and I began to sweat.  My heart was pounding so hard and all I could hear was Kayla saying, "Mom.. you aren't answering any of the questions. Mom! Are you listening?"  I looked at Ashley and asked her with a lump in my throat, " Do you know the results of her MRI? Is that why you are sitting with Kayla?"  She quickly answered, "Oh no! Not at all. I don't know the results".  Still, I wasn't really able to believe her since she didn't seem to be moving any time soon.  I just kept thinking, maybe she doesn't know the results but got a call to come and sit with us.

Kayla's name was finally called.  I couldn't get in that room quick enough.  We went back to room 6 and sat down.  A new nurse came in and introduced herself and left.  I was expecting Kayla's nurse Lizzy or Dr. Gajjar to walk in, but instead walked in two doctors in white lab coats with badges that read "ONCOLOGY" in big bold print.  The lump in my throat returned again this time bigger. What in the world was going on here? What bad news were they about to share??? I was so scared.  They asked about 4 pointless questions before I interrupted demanding that they tell me why they were there and did they know the results of Kayla's MRI.  The lady said, "Oh yes! Everything looks great! I will get you a copy of the report if you want".  And just like that, I felt like I was going to have a heart attack.

I just kept trying to catch my breath.  It was so unfair that I had to go through that added stress on top of already being worried enough.  When Lizzy and Gajjar finally walked in, I made sure they heard my story loud and clear. That is just NOT ok to do to someone.  They reassured me that all doctors there deliver news in different ways. That it totally depends. And that each day it's different. So no matter how much I try and search for a clue, I won't get one.  I guess that makes me feel better. Still, those long hours after an MRI and when you finally learn the results are the most excruciating stressful hours EVER.

Yes, Kayla looks fantastic. Yes, she isn't showing any symptoms.  Yes, over and over I have watched as friends have gone in with their kids looking and acting perfectly healthy and thriving to be told that their new normal was about to get rocked yet again.  Over and over I have heard the stories.  You are never safe. It's never over. No one can ever tell.  The reason for the scans every 3 months is to find things early if they are back- hopefully before any symptoms have occurred.  So, you can imagine how you just really don't know.  It's always scary.

Today I met a mom and her 16 year old son, Anthony - yep- Anthony.  He was there for the results of his yearly scan. 7 years out!!! He also had Medullo and was diagnosed when he was only 9 years old.  It was refreshing and also sad to hear her say that even this far out, she gets SO scared each and every year.  They walked out of there able to breathe again today too! I was so happy to hear this news. His cancer had metastasized to his spine. So the fact that he has remained cancer-free this long is so inspiring to so many of us!

We are back home safe and sound. Kayla had the awesome surprise of her room being painted while she was gone!  She is so excited to have her "tropical room".  I am about to crash. It's been a very long and exhausting day as you can now imagine.  Thank you all so much for the prayers, thoughts and kind messages.  Kayla has the most amazing loving team behind her... we are so grateful!!!!  

Next up. 4th Grade!!! YIKES!!! :)