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!!! :)

1 year - day 2

Last night I couldn't sleep.  I don't know if it is more the anticipation of the possibly unexpected news, or just the fact that there is this dreaded appointment so stinking early that we just can not miss.  I always have this fear that my alarm clock will not properly go off.  Either way, I found myself awake most of the night except for about three broken hours. 

Kayla made it to her appointment on time and the scans went as good as they could.  Being that they are an hour long, she actually fell asleep during - lucky- well, no. Not really. 

Audrey, Carolyn and I sat and stared at the beautiful, huge tropical fish that swim in the MRI waiting room fish tank.  There is something so peaceful about that massive tank. Results have been heavy on my mind all day. Reading all of your encouraging notes to us really does help.  Having best friends here was the perfect medicine.  We find many moments to laugh and joke, just like we always do.  This morning, just before we Kayla got called back for her MRI, the girls were commenting on which fish they wanted to be.  Kayla said she is the Nemo fish and I am the cute puffy fat fish --- NIIIICE.  We laughed and laughed.  She kept trying to take the comment back, but it was too late! HAHA. Very funny Kayla Rose.  I will get her back for that one! ;)

Just following her MRI, we had another appointment at A/T for more labs. Unfortunately, there was no communication between clinics and they removed her IV prior to this appointment. So, she had to be stuck. Again.  

We quickly headed on over to the St jude gift shop to find something to soften the sting.  When my money ran out, we were done.  

Kayla had her follow up with Physical Therapy. During the evaluation, I was asked if she can get in and out of the car on her own? Could she kick a soccer ball?  Can she climb stairs without hand rails? All of the questions were happily answered with an enthusiastic "yes".  So many kids who have had the same cancer as Kayla can not answer yes to those questions.  For that I am eternally grateful!  She had rave reviews from her therapist who sad she has zero concerns for us at this time. When we told her that Kayla had recently joined her brother in his Tae Kwon Do class, she raised her eyebrows and beamed!  It truly is a miracle.  And just like that, and she skipped away down the brightly colored hallway with Audrey.  It is a miracle.   I will never take it for granted. Ever. 

Our final visit with the Endocrine doctor was pleasant.  There are no changes from the last appointment to this one.  Her height is still at 5% for her age group.  She has grown 1 cm.  If her growth remains at the same rate we will wait to talk about any future growth hormone tests.  If it falls off a bit, they will want to do it at the 1 yr 6 month check up in February.  So it just really depends.  If Kayla were say, 13 years old, it would be a more urgent matter. Because she is only 9, we have some time and flexibility still which is really good.  Until then, we just keep waiting for signs of puberty and hoping that the chemo and radiation didn't effect any of that... Just another thing we all often take for granted. 

Our day at St Jude is over.  So, we are beating the heat at the Target House again.  It's 98 degrees and soooo humid.  It's hard to breathe and the mosquitos have had their way with me again.  I forgot how big these vampires are here! We are happily enjoying a movie in the Amy Grant room.  My stomach is in knots. My concentration is low.  I am just hoping that this is not the last day of this new normal that we have grown to love and be grateful for.  So many friends come back to scan with their kids doing just as fantastic to have their wounds re-opened again.  It's just so scary and unfair.  So, hug your loved ones close and just don't forget to be grateful for even the slightest inconveniences.  Because everywhere you turn, there is someone who has it worse than you.  There is no place that reminds me of that more than here.  Just this morning I met a mom who's 5 year old daughter (who looked and acted two) has a tumor in her brain that they will never be able to get rid of.  The chemo and the radiation have not even touched it.  They have only caused horrible side effects (some which haven't even reared their ugly heads yet).  The only thing that has helped her live this long so far, is surgery. She has had 6 surgeries so far and it just keeps coming back.  So, I took a full "survivors guilt" filled deep breath and just felt grateful that our situation hasn't come to that. That we are here today.  i love you today.... beautiful today. 

1 year Scans - It's time.

We arrived in Memphis yesterday night.  It was a smooth flight here with no delays.  The best part is that Kayla and I both have friends here with us. We decided to get a rental car so we could get out beyond the St Jude walls and show them a little bit of Memphis.  We are so glad to have wheels here. It really makes it nice!

Today we got to see Kayla's best friend from St. Jude, Angiel!  It was sooooo great to see her, her mommy and brother.  To be able to hug them in person again and just sit with them was very special.  Angiel looks so beautiful.  She just started 6th grade!  The look of surprise on their faces when we showed up was priceless!!!

Audrey, Kayla, Angiel & Markus (the big 3rd grader) haha!!! 

After our visit with friends we drove over to the Target house to tour it and do some crafts of course.  We painted an awesome painting for Kayla's room. She has no idea, but her dad is painting it a beautiful turquoise blue to surprise her when she gets home. Ever since Hawaii, she really wants a "tropical" room.

Kayla finished the day getting all checked in through A/T where she got her IV in place for tomorrow's appointment.  They did some lab work so that we can get all the results needed on her thyroid.  We had the fabulous Miss Jackie. She was so great. No blown veins.  No double sticks. No numbing creams/J-tips - and NO tears.  Audrey held her other hand and they just stared at each other.  The girls formed a bond that was beyond any that they already had. It was really really sweet!!!

 Here we go... the neck vein and the eyes say it all... 

OUCH!!!

The look of relief knowing the worst is over for today

And just like this... they are true BFF's forever. <3

The awesome "Miss Jackie" 

For almost a year while we were here, Kayla dreamed of showing her friends at home this amazing place where she received her life saving treatment.


So today, Audrey and Kayla were running through the halls giggling and skipping and just enjoying every second of it.

The walls are just as cheery as always. So many beautiful smiling faces warmly welcoming us with hugs galore to give us strength.  This really truly is one of the most amazing places on earth.

 Dinner at Huey's

(famous for their tooth picks on the ceiling. This is how they get there!)

This nice guy and his horse, Blue, were dropping a patient and their family off at the Grizzly House after what must have been a fun stroll just as we got back from dinner. Now that's awesome!

So, tomorrow at 6:45am we will walk over to the hospital where Kayla will under go the all important Contrast MRI.  Please keep those prayers, thoughts and candles blazing.  She seems to be in good spirits. My stomach is in knots and as always, we can't get the results soon enough. The thought that at any moment your life could be turned upside down once again is something that can't be explained. So we just breathe... and wait.

We will know results for her MRI on Tuesday.  I will update tomorrow night with her endocrine results. Thank you to all of you for your kind emails, texts and FB messages. I read them ALL. It really means so much!