Tuesday, November 11, 2014

Three Years Ago

Three years ago on 11/11/11 a simple MRI revealed a mass on my 7 1/2 year old's brain.  Three years ago.  Wow!!! I can't believe how much we have all been through in that amount of time.  This year, we will again be participating in the St. Jude Give Thanks Walk.  It will be held at the San Francisco zoo.  Last year, we were blessed with not only incredible family and friends who walked and fundraised with us, but perfect weather to boot!

This year, even more friends are walking and supporting us which is SO exciting!!!!!!

As of today we have:

Team members: 20 
Total team amount raised: $6,982.00 
Current team ranking: 2

That's right! #2!!!! Whoooohooo!!! 

Your individual progress

MY GOAL (change)

We have 11 Days until we walk again for Kayla and all of the kids who will benefit from St. Jude's research to end Childhood Cancer.  

Since 11 always seems to be our number... I figured today would be a great day to ask for help.  If you have $1, $11, $111 etc., please consider donating.  Every penny goes directly to St. Jude.  Click here to Donate

Today, I not only give thanks to the amazing Veterans who protect our country, but to the chemists, doctors and nurses who do so much to try and protect the lives of precious children who should not know this kind of pain.  

Thursday, November 6, 2014

Back in school :)

We made it home!   It has been non-stop still.  This mixed with work, Anthony, Denny, emails, texts, and a new family diagnosed with a brain tumor..... yep.......(I won't even go into more... you know who you are if you even have the time for me to read this- probably not)  my time has been pretty filled up. Blah blah blah... it's not rare..... this WE know, right???

I just want to say THANK YOU. THANK YOU!!!!!  Thank you to all of you who posted, prayed, lit candles, texted, emailed, and just were plain out there for us. I don't know what I would do without you all. Seriously!!!!!!!!!

I just wish I could have recored each and every time Kayla was able to express her new vision. It would make each and every one of you who are able to read this sooooooo grateful.  Cars were shiny again. She saw birds! Clouds... she even told me that our concrete walkway is beautiful!!!  I had no idea just how bad her vision was until after this laser procedure.  Only one little girl told her, "to be quiet already. We all know what these things look like".  Kayla told me she said to her, "Do you know what it's like to have your sight taken from you and then to be able to see things again?  I have never seen more clearly in MY LIFE and I will never forget how wonderful this feels".   I am blessed beyond measure tonight. Cherishing the ability to breathe again. My gloves are still up but I am surrounded by so much love that I feel like I am not the only one with gloves up.... we love Kayla. Thank you. THANK YOU.  11/6/14   - five more days.

I think she is in an incredible place.... right? Who could ask for anything more for this girl.... XOXO

Tuesday, November 4, 2014

Day 3- November 4, 2014 RESULTS!!!

CUTTING TO THE CHASE... NED!!!!!!! NED. NED. NED.  Those words will never ever ever get old. Blessed to hear them at 2 1/2 years out of treatment.  So so very blessed.  Not taking one letter for granted. THANK YOU GOD!!!!!!!!!

Ok, Whew. I can finally breathe. It's been a very long day but my sweet girl is tucked into her bed next to me watching Grease on TV.  Between Full House last night and Grease tonight, I feel like I might be in a time warp of sorts. I love it. (and thank goodness a LOT of it is above her head still)

This morning we started in Assessment Triage for more well checks and we rushed off to E Clinic for the much awaited news.  I have to admit, this was a new level of nervousness for me.  I think it hit me yesterday.  Seeing so many people who haven't seen Kayla looking so "herself" in so long made me want to cling to that hope, that memory, that belief that things will only get better from here.  The hope that that dagger won't hit my mommy heart again.  I woke up at about 1:45am and could not get back to sleep.  I was hot. Sweaty. My heart was pounding out of my chest so hard it was as if I was under water and the beating was all I could hear.  Just as I woke up I heard Kayla make this odd noise.  Kind of like she was about to sneeze breathing in a few deep loud breaths with no sneeze.  It scared me more.  I wondered what she was dreaming about. Hoping and praying we would have nothing but good news to share today.   I took many deep breaths and felt much more ready to face this day.

E Clinic was short and sweet.  It was a little bit of mixed emotions as Dr. Gajjar told me that we need to push for Growth Hormones because she has fallen off of the growth chart.  But to me, Kayla has always been small.  I know she is probably not much bigger than she was at 7 1/2, but to me, she looks perfect.  I took a deep breath and was anxious to hear what her Endocrine Dr. would think about his "urgency"...

Kayla and I then rushed to get some quick lunch and luckily saw Jenny and Mae in the Kay Cafe.  Phoebe seems to be making a little bit of progress which is SUCH great news. Since her stroke, she still has a very rocky uncertain path which is very hard to understand and process.  It really is day to day with a lot of these kids.  That... we have gotten very used to here.

Finally, we walked over to Endocrine to get the real scoop on Kayla's growth.  She grew almost an inch and gained a little over 1 lb. since her last visit!  We will take it!!! So, we got strict orders to keep packing the calories in.  Keep up her milk because radiation can make bones dense.  Her thyroid seems stable, but I should get that info for sure by tomorrow.  Her Endocrine doc said that there is no urgency to push for GH.  I couldn't agree more.  For now, she can just stay small and healthy!!!!  I am very worried about the risks since she has already had cancer.  I know that this is very controversial, but for me, I can't get past the possible side effects that it could cause.  We will cross that bridge if and when we should ever need to.  For now, I am happy to hold off!

Last but not least, my baby took her eyeballs through a stroll through the car wash! Her eyes got the laser treatment that she has been waiting on pins and needles for! She's still quite dilated hours later, but she says that everything looks so clear and new again. She forgot how beautiful the sky was.  All of the little details she was seeing tonight brought tears to my eyes. It's the little things! I am so grateful!!!!!! So grateful she is in the best hands possible.  So glad she is mine to hold and hug tonight.

All dilated and ready to GO!

To celebrate, we took the shuttle over to the Target House to visit our old stomping grounds. Really, we wanted to see the new DreamWorks room that now replaces the Tiger Woods room. It was INCREDIBLE.  What a wonderful addition.

 The projector on the ceiling

The interactive screen... kayla was waving her arm and the confetti was flying! So cool!!!

The amazing Candy-Cane Play Ground

We couldn't leave without spending at least an hour in the craft room. Kayla made some goodies to bring back to school. She said I could share ONE on here. One is a Christmas present so it will have to be secret.  ;)

Tomorrow our shuttle is set to arrive at 8am to take us to the airport. By this time tomorrow night, we will be home and happy to be bombarded by hugs and purring and so much love. Thank you so much for getting us through this once again. I don't know what I would do without each and every one of you!!!!!!!

I was talking to someone who works at St. Jude today about the blessings of the "St Jude Perspective".  We both agreed that everyone should be able to receive this gift... for surely the world would be a kinder place.  Well said. Well said.

Monday, November 3, 2014

Day 1. Nov 3, 2014

It was a busy day here at St. Jude and I am kicking myself for not bringing my pedometer with me!  I bet I logged in quite a few steps today running all over this place.  I don't see it in my jeans though unfortunately.  What? I know it's only been one day, but I was kind of hoping for a miracle.

Our day started out in Assessment Triage for Kayla's weight, height, blood cultures to be drawn and an IV inserted.  We had an incredible nurse who listened to our concerns that the past few times she has had an IV, they inserted the wrong gauge tube.  Kayla's veins are so tiny so they always reach for the smaller tube, but that tube doesn't allow enough room to pass the contrast dye through for her MRI.  The contrast is crucial so that we get the most accurate picture of her precious brain.  This time the nurse nailed it and got it in on the first try!  We were laughing so hard because Kayla's height and weight are just about the same... 51.7 lbs and 51.5 inches tall!  How funny is that?!

After A/T we headed on downstairs for Psychology.  Normally, they split the 6 hour visit into two days.  But, because Dr. Hopper noticed that the only thing we have scheduled on Wednesday is Psychology, he asked if we would be interested in trying to cram it all in today so we could leave earlier on Wednesday. Ummmm, YES please!  Problem was, travel couldn't reschedule our flight until Dr. H took psych off of our schedule... It was a long 5 hr wait, but Kayla did it!  I was at her beck and call bringing her grits & OJ.  She did get a quick 30 min break towards the end so we could grab lunch.  While Kayla was taking her tests, I snuck over to the gift shop to see what new fun stuff they had.  I was so excited to run into Kapri's mom, Becky, and her two other two daughters!  It was great to see them.  We are going to try and meet up at the Target house tomorrow for some fun after our long days are over. Kayla really wants to give them a tour and show off her old stomping grounds.  Because they have a lot of people with them at all times (and the target house only allows 4 people at a time), they are renting a place in Mud Island.  I hope Kapri has enough energy to hang tomorrow.  Such a sweet girl from Northern Cali fighting the same cancer as Kayla!

The good news, no, GREAT news is that Kayla scored extremely high on her Psychology exam.  Not only was she average to high, she improved her score from a year ago which I was told is very rare!  How could I be any more proud of my amazing fighter??? Dr. Hopper said, "I bet all of her teachers just love her to pieces!!!"  He has no idea how much!  And we LOVE them!!!!

We popped in for a quick squeeze with Miss. Michaela and left another finger print on Kayla's E-Clinic tree that she and her daddy started in August.  It sure is growing.  We hung with Jackie and Crystal for a few... love them so so much.  We passed Lizzie in the hall and she said she is going to see us in E Clinic tomorrow.  I think I forgot to mention a little bit about Miss. Lizzie.  She was our FAV nurse who worked with Dr. Gajjar.  It was Lizzie's kind eyes, gentle spirit & whitty humor I have clung to at each and every MRI result visit. Just having her in the room could calm the most nervous soul.  Recently, she made a very big change in her role here at St. Jude.  She now works in the "quality of life" department.  Yep, hospice for these precious children and their families.  As I was wiping tears away when Denny told me about this change in August, I quickly gave a huge sigh of relief when I learned just where she was going.  Not only would she be the one person I would want there for us if we ever had to go there, but I am certain she brings that level of comfort to so many others.  She is one of a kind....  So, it was great to see her.  We all love Lizzie.  I look forward to visits ONLY in the hallways, cafeteria, and E-Clinic stalkings....

 Kayla's tree is GROWING!!! 

 I placed my " <3 " next to Kayla's blue thumb print. See it?

Jackie, Kayla & Crystal.  Kayla wrote the question of the month on the "famous" E Clinic white board.

LOVE these amazing ladies!!!

It was finally time for the big one.  The MRI.  We walked into the Imaging Center and it was just about empty.  I went back with Kayla to help her change out of her clothes and put her hospital gown on.  Minutes seem like hours while she was back there, but today I was happily distracted seeing all of the sweet posters, messages of support and even a video from kayla's class on Facebook.  You all are amazing and we love you!!!! Thank you for keeping us lifted during an always very nerve wracking time.

When I went back in to help Kayla get dressed, she asked me something that literally knocked the wind out of me.  She said, "Mom, what would happen if I relapse?"  I was speechless for what seemed like an eternity when I finally just grabbed her and sobbed into her hair.  I told her we won't worry about that because that isn't going to happen.  She was crying and hugging me so tightly and telling me that she has always wanted to ask me, but was afraid of the answer.  I didn't have the most perfect answer, but it was all I could get out.  It's a word I despise.  I hate it with every fiber in my being. If it's possible, I hate it even more than the word cancer.  Cancer is bad enough. But relapsing is not something I can even say without having to catch my breath.  So I won't. I pray I never have to ever ever ever say it when it comes to my sweet amazing girl.  Nothing would break me more.  So to think of Phoebe who has relapsed 3 times... it just isn't fair. It isn't and my heart aches for all of my friends who have ever had to hear those words.  Please pray for these warriors and help us spread the urgency we desperately need for better treatments.  4% is not enough.  Let us be their voice.... help me scream!

I wish I could take everyone here with me to see the amazing place that St. Jude is.  There is no better place you could ever be to fight this ugly horrific battle. Once again, I am living the St. Jude perspective.  I don't love it.  But I am so grateful... Perspective is everything.

Tomorrow is another long day.  MRI results bright and early followed by Endocrine and the long awaited Laser Procedure. I am on pins and needles tonight as I wait to be able to share the next few updates.  HUG YOUR KIDS! HUG YOUR LOVED ONES!!!

Love to y'all from Memphis!!!!

Sunday, November 2, 2014

Back in Memphis - Nov 2, 2014

We're here!!!  Two safe flights and we arrived without any issues.   Kayla and I  are all checked in and unpacked in our room at the tri-delta house (formerly grizzly house).

Since we had some time to ourselves tonight, we decided to walk over to the Kay Cafe inside of the hospital to get some salads for dinner.  I was anxious to get ahold of my friend Jenny to give hugs and connect.  We haven't seen each other since our girls were in treatment here.  I am very very worried about her daughter, Phoebe.  She is once again going through an incredibly hard battle.  The good news is that she is starting to show sides of her feisty "true" self again which is an incredibly good sign. I call it mommy medicine!  If you haven't followed Jenny's blog yet, you should.  She is such a fantastic writer and could really use all of the support she can get right now.    As soon as we walked into the hospital, there they were!!!! Jenny and her oldest daughter, Mae.  (Mae and Anthony used to play when we were all living here)  Oh what a great surprise that was! Incredible timing.  I hope to see much more of them while we are here.


This is sweet and incredible Phoebe with her mommy, Jenny.

 Home away from home

I was feeling so many mixed emotions being back here taking updated photos in front of our favorite places.  As always,  it didn't take long until I was struck again with the "St Jude perspective".  A good ol' gut wrenching reminder to continue fighting for these precious kids.  Probably one of the hardest things for me to see here is an ambulance in-front of the ICU entrance.  Never a good sign.  It always turns my stomach to knots remembering how much of an emergency it often is for patients to get here.  I am grateful that is not us. Not tonight.

Tomorrow we will be at the hospital at 8 am starting with blood work and an IV for Kayla's contrast Brain MRI.  She will spend 3 hours with Psychology.  After, she will also have her hearing checked and hearing aids adjusted if necessary.  Finally, our first day at the hospital will end with the always nerve wracking MRI.  It is scheduled for 3:30pm Memphis time.  PLEASE keep Kayla in your thoughts and prayers that all is stable still.  We will get the results from her MRI on Tuesday. Tuesday, she will also be having a laser procedure on both eyes to "hopefully" clear up the rest of the cataracts.

Thank you so much to all of you who have been sending all of the kind letters, emails, texts etc. I am reading them all. THANK YOU.  We love our Army of support more than you can even imagine.  You all are amazing.

I will keep you posted......

Tuesday, October 21, 2014

Almost 3 years... a new plan

What could possibly happen so bad that it takes so long to find the strength just to log on? Two trips to St. Jude since my last update and I couldn't even find you?  Reach out to the people who have followed this journey and who have our backs.  What could possibly have happened to me...........
What happened to Kayla?

Honestly, I am ashamed that I couldn't snap out of it. Life has been hard. Realizing this is still the beginning of this journey. Having to keep my already exhausted fists up to protect me from the blows that keep coming is hard while trying to update online.

After keeping my gloves up to protect me from that gut wrenching pain that I felt on 11/11/11, I have often felt that I would rather die than to be hit with that agony again.  I have been speechless on here. Ready with constant protection from the blows that have come and continue its threat to return. My gloves are always up.  I sleep with one eye open.  Refusing to ever be slammed with that pain ever again.

It is my fault I have not updated in so long. It is my fault and I am so sorry.  I realized that in order for this momma to survive, I have had to put my oxygen mask on first.   It's been a necessary adjustment for this family.

That being said..... I have an update before I get to the medical updates to come!!!!

Kayla and I are co-writing a book. I couldn't imagine a better therapy session than that.  I will start to fill you in before our November 2 trip back to St. Jude.  I have a lot to catch you all up on. I am reaching for the energy to  assume people still are following Kayla and want to know.  I know you all are out there. I know that writing isn't just for me any more.  I thank you for holding Kayla in your hearts and prayers. Almost 3 years ago we started this journey " officially".  

Do I purge here, or save it for the book??? hmmm. I am not quite sure........... I think I will find my happy medium.

Love you all.

Wednesday, May 21, 2014

St Jude update - 2 yrs post treatment

So, I somehow forgot to grab the laptop on the way to the airport. Boooooo mommy!!!!

I am so sorry! I can tell you I got my punishment.  Being at St. Jude and not being able to blog was like eating your favorite food and not being able to taste it!  I won't do that again!

So, let me make it up to you!

First of all, I will start with the great news. Two years after the last treatment, Kayla's MRI remains NED. NO EVIDENCE OF DISEASE!!!! CLEAR!!!! Whoooooo hoooooo!!!! GO Kayla GO! Now, Kayla graduates to scans every 6 months for the next 3 years.  I can not tell you what mixed emotions this news brings. Of course the biggest is just a deep relief that the treatment has worked for her so far to keep Medulloblastoma AWAY.  Yes, there are still risks. Risks. God I hate that word.  For now, lets just be happy!

Saturday morning, Kayla got to represent in our local town of Santa Rosa in the "Heroes and Helpers" parade. Her brother and Dad were also there to join in while I worked.  It looked like SO much fun.  I can not even express in words how wonderful and caring Rob and Joss are (Froggy 92.9).  We are happy to help and share our journey with them.  It's an amazing thing to witness the love and awareness that comes from Kayla's battle. Stinks that it's my kid... but I'm SO incredibly proud of her. And she is so incredibly proud of herself (most importantly). 

Oh wait! I forgot some big news! Kayla turned 10!!!!!! This is how behind my blogging is. I know it's great that things are going so good that I am busy with work and such to not have time to blog this important information, but it makes me sad.  You have been such an incredible support to us and I want to keep the really important big things on here... and turning double digits is HUGE! So, here is a few birthday pics.

Last picture a 9 years old!
 Brotherly love... YES!!! Happy double digits Kayla!

 It wouldn't be a birthday without my BFF Sisters! :)

So, skip to the evening of the parade. Kayla and I geared up to head back to St. Jude.  It was finally my time to go with her. Den was busy with finals at school.  Beyond my time to go though.  Honestly!  It's so hard being at home waiting on all of the important details and updates.  SO hard not being there.  So here it was. My turn. My first time flying back alone with Kayla.  Actually, I had a few people who wanted to come but I was happy to go and have this alone time with my girl. We just don't get enough of it. We had so much fun together. God I love her.  She is just such an incredible and bright girl.  Easy to be around. Eager to please. My baby girl.  I couldn't be more proud of the person she is.

After two long flights, we arrived at St Jude. The weather was still mild, but humid.  The smells became all to familiar again to us.  The shiny waxy floors.  The families you pass by where we share that familiar glance of understanding with.  We were at our home away from home.  A place where we just have a shared bond and unexplainable understanding... The sounds of that HEPA filter buzzing in our ear as we slept.  Ugh. What would happen this time? What would the MRI read? And what side effect would we have to learn about this time?

Hope. We just have to hope!

Day 1.

Kayla checked in happily at A/T. She chuckled as she forgot her medical record number. I could never.  We got her new wrist band and we headed over to E clinic to have this persistent cough she has had checked out. Honestly, we have all been hit pretty hard with allergies this time of year, but a pertussis warning was just issued in her school right before we left! The last thing we want to do is put these neutropenic kids at risk!  So, we spent a good hour and a half being checked out to be officially diagnosed with "allergies".  Best dx I have ever heard!!! ;)  

We headed over to the cafeteria for some good ol' southern grits.  Kayla has now acquired a taste or a "fixin" for grits.  So grits she must have!  It sure doesn't take long for me to start adding that southern twang to my lingo. 

Kayla then had a visit with her visual specialist at St. Jude.

Unfortunately, Kayla's cataracts have progressed to the point that she could actually qualify for surgery.  We were advised to put it off until it really affects her and is a "problem".  She isn't driving, so that's good!  Also, her incredible IEP team at school has made so many wonderful accommodations that we will hopefully be able to delay a year.  We shall see.... but we are hopeful.   Surgery will require us to be at St. Jude for 2 weeks. One week per eye. There are risks with the surgery (as there are with any surgery).  One thing her doctor is certain of is that she will require reading glasses after.  News to me!!!  So, we will hopefully be able to push this out for a bit.  She was checked again to see if regular glasses would help at this point, and they still will not. So we wait.

Kayla then got to A/T where she had her vitals taken and she got her IV.  Miss Virgina was there again. We sure do love her! Kayla's veins have seemed to have grown (even if the rest of her has remained pretty small).  Maybe it was Virginia talking to them.. but they just popped up! Whoo hoo! It's the little things. Kayla was SO happy!!!! ONE stick!


Clearly, we were pretty happy about this visit!!!!! Kayla ate it all! Go Kayla :)

We went and visited Endo where they measured Kayla's sitting height along with regular height and weight. She has gained 1 lb. and 1 inch!!! No real updates other than that. The rest are private, but fine.

We finished our day with a visit down to the School where we could hug our beloved Miss Michaela!  How beautiful is this??? We can't go to St. Jude and not get our sugar!!!
Kayla was out like a light as we prepared for the next very full day starting with a 6:45 am MRI.

Day 2. 

How could this happen????? There was zero contact between A/T and MRI imaging.  Kayla had that IV for nothing. The wrong gauge was inserted.  She needed a 22 gauge and not a 24.  You have to have a bigger size tube for contrast MRI's darn it.  (yes, 22 is bigger than 24... opposite)  She had been SO brave. So strong. No tears. Now, she had had it! I couldn't blame her. I was ticked too! Seriously?? How is there no communication between these two important places?  I didn't need to flush her IV the night before. I didn't need to hand bathe her early that morning. She could have had a quick needle poke and an IV the next morning. UGH.  HOW DOES THIS HAPPEN? We were tired. We were nervous. We were frustrated. I witnessed the new nurses assistant setting up the station for her new IV. I witnessed her trembling hands and literally heard her prayers inside her head begging God that she would NOT be the one that had to try and get Kayla's new IV in place. It was between her and the grumpy senior nurse. Great. Just GREAT.  Kayla was having a hard time not sobbing but silently crying.  I was coaxing her to breathe like she was in labor. She was sitting on my lap and I was blowing her nose.  It was rough for her.  It was early. This was not fun.  Luckily it was the senior nurse that was the one to poke Kayla once again. Lucky for her she got it the first time.  I will NOT let that happen again.  Kayla picked Sleeping Beauty to watch during the MRI and I was rushing off to check out of the Grizzly House.  Our shuttle to the airport would be arriving at 12:00. The rest of the day was stacked.  

I rushed back to the hospital after lugging all of our bags across the humid parking lot and got back to MRI imaging about 10 minuted before she walked out with her nurse. What a trooper this kid is! Seriously.  

We headed over to Speech therapy and PT where she continued to awe them at how fantastic she is doing. PT was especially impressed.  Not only did Kayla do hopscotch forward but backward!!!!  The first in  history for her therapist at St. Jude so we were told.  He confirmed that Kayla should continue her amazing Tae Kwon Do! It's paying off!!!!  :)  GO Kayla GO!!! 

Time for E Clinic.  Result time!  I was pacing, tapping my fingers... completely unable to hold still!  This kind of stress is not something I would ever EVER wish on anyone.  Luckily, you know the results. Kayla's scans remained clear. No change. NED - No Evidence of Disease!!!! 

Eating more grits while waiting for her physical therapy appointment  ;)

We are so grateful. So so grateful that she is still here. Still breathing. Still fighting.  We will NEGU. NEVER!