September 2016- long over due update

Ok. I knew it was a long time since I blogged, but I had no idea it had been this long!

I don't know how I could stay away from the keys this long. I apologize. It's been a tough year for this momma.  So let me try and catch you up a bit.

Kayla. How is Kayla doing? She is doing great! Aside from the hormones she is going through (which she hates) she is a very happy 7th grader. 7th grade!!! Wow. I don't even know how 5 years has gone this fast. Her growth is very slow still but we managed to grow a whole shoe size finally this past year which is sooooo awesome! She is still very small compared to her peers but not the only tiny girl in her school which helps. This past year we have been growing and nourishing incredible friendships which have healed our souls like you can't imagine. I don't know what I would do with out these incredible people in my life.

In November, we will head back to St Jude for Kayla's 5 year check up! This is where you are considered "in remission".  It is honestly a word that is kind of meaningless to those who have battled cancer. Don't cringe. Let me explain. I am not sure who they comfort really. Up until 5 years after diagnosis... if your scans remain clear, you are "cancer free", "stable", or "N.E.D - no evidence of disease".  It's a very scary time each and every time b/c you just never know when or if something new might rear it's ugly head. Treating cancer can cause cancer. Isn't that the most terrible thing ever???  I hate it. It's something I never knew before this.

Back in May, when Kayla and I were at St Jude, we had a bit of a startle when a freckle showed up in the back of her eye ball during her visit with her Eye Surgeon.  There it was. This unpigmented freckle. It was flat and round and benign. But this is now something that must be watched and measured every 3 months (we will do this here locally at UCSF and results will be shared with St. Jude).  Other than that, Kayla is a very normal moody 12 year old girl. And I love it.

Anthony just turned 9. NINE. I can't believe it. He is a sweetie who never misses a night of hugging me and telling me how much he loves me. The day before his birthday, he cracked us all up showing up to school in a suit. "It's to celebrate my last day being 8".  He's a hoot. That's for sure.

Denny got through his first semester at school with straight A's. He had the most incredible teacher who loved him as much as he loved her.  There is no school during the summer, so it was a nice break from the books. But there is no rest for Den. He was hired at Novato Community hospital where he worked A LOT while not at school. He works in the ER checking patients in, the Lab registering patients for work to be done, and in the main hospital as the main switch board operator. The experience with insurance and processing insurance has been a huge help with all of the things we have been through with me which is a whole other long story. Well, maybe not so bad. I can attempt to summarize. So now den is back to school (got only one problem wrong on his first test this semester... he's a rock star student!).  He's working weekends to keep his position at the hospital. Very happy about this. It's hard to get a hospital job these days. Very hard for new grads so this will be a big plus when he finally graduates!

So, we know that stress can do a number to you. Yeah. Well, my stress finally set off a major bomb in my body. Several really. November 2014, I started to have some funky blood results come back. Nothing major, but not normal. We watched it and I continued to just go about life. I didn't really think too much about it or worry.  Then in March... BAM. Ok Annie. Your turn. Have fun with this! March (6 months ago) I had the most horrific gastric attack. It was bad. I mean b.a.d.  It was so incredibly scary. The pain reminded me of labor. It came on so fast and hard and caused me to be so nauseous. Once that started, it didn't stop. Unlike anything I have ever had before. After hours and hours of it, we decided to head to the ER. I was admitted (which ended up being 3 nights) and they started me on an IV and pain meds. They sent me in for a CT scan for my stomach. I did have some pretty upset upper intestinal areas but... you know when you hear of them looking for one thing but finding another? Yep... that's what happened.  The CT showed that I have severe aortic stenosis.  It's severe narrowing to the blood supply that comes off of my heart. It's not in my valve. It's in my actual aorta which is much more rare.  Long story short, 6 months later and I now have 4 specialists at UCSF. Gastro, Rheumatoid, Hepatology,  and a vascular surgeon.  I have had 6 MRI's, two more CT's, and an ultrasound. For sure there is something Auto immune going on. They have ruled out every one of the most common ones. But the Stenosis is the immediate thing we need to address. So, I have an awesome Vascular Surgeon there, Dr. Hirimoto. She has come up with a plan.  Surgery.  I am scheduled to go in 4 weeks from today, Oct. 4th. She says she is clearing the board for me that day.  It's a long one. I also have stenosis in the renal artery (the one that goes from the aorta to my left kidney). So the plan is to go in and correct that as well.  They will have to temporarily cut off the blood supply to my kidneys one at a time during the procedure.  The portion of my aorta that is stenosed will be replaced with something man made.  The hardest part is where the stenosis is located. It's right where it branches off to your major lower organs. So they will have to open me up and move my organs to the side to get to the area. I am told to plan to be in the ICU for about a week. Then home for 4-6 weeks to recover.  The biggest risk is to my kidneys. So if you pray, please please do so!

Kayla is scared and mad. She keeps saying that it isn't fair that we have to go through more. That we have been through enough.  The thing that makes me upset is that they can't link the gastro attacks with this.  I have been back to the ER more times than I can imagine with the pain and vomiting. It caused me to miss so many days off at work. I did the diet elimination thing. I even got attacks when I didn't eat anything at all. Believe me... they have tested me for EVERYTHING.  The gastro specialist quickly ruled food out as did we.  It has nothing to do with what I eat.   I still have a feeling that fixing the blood flow will help with the stomach too. Our bodies are crazy!  The good news is that tomorrow will be 8 weeks since I had my last attack. Seriously the longest I have gone since March. There was one point where I went 6 weeks and then BAM. I got one just about once a week for months. Even spend a night in the ER while at Kayla's check up in Memphis. Not a good story. Nope.  So hopefully that is behind me.  Fingers and toes are crossed over here.  Still we will need to figure out what the heck is going on with me rheumatology related. And there is more but I won't go on and on and bore you with my stuff. I am incredibly anxious to get this over with! They think I have had it my whole life and that I have no idea how good I will feel once I am healed. I can't wait to feel that for myself!  I just need to be well before Kayla's trip back to St Jude in November. (it's right after thanksgiving)

Ok, I will update soon. I won't go this long. I really had no idea... time flies when your having fun and even when you aren't apparently!

Love you all! Go Kayla Go!!!!!

Camp Okizu pick up July 2016

Camping (year 2) Lake Morning Star Kayla and Mackenzie after a mud fight <3

Last morning camping

Enjoying lunch in San Fran after one of my ultrasound (they are the best helpers!!!)

Celebrating Jack's birthday and years of continued friendships!

At school dressed to the 9's... last day of being 8. God I love him!

On our way to the Giants game for the big 9!

Pre-Game luxury thanks to St Jude night at the park. They all caught balls during the warm-ups!

Dibbs at the game. He LOOOOVES his birthday!

Happy 9th Anthony!

 


Good night all... <3

In an instant everything can change

 Kayla and Hollis (who is famous around her for her "Juggling for Jude" campaign)

"She looks so healthy.  She's growing.  She looks amazing!" That's what people say when they look at Kayla now, almost 4 years out from diagnosis.  It's hard not to think that something new could be brewing behind the scenes...... It's something I always push as far out of my mind as possible to keep me sane and happy.

For about the past month, Kayla has been complaining a lot about pains in her legs.  Of course, I figured they are just growing pains. She's 11.  Everyday, the same complaints... but they started to get worse.  I would catch her walking on her tip - toe to avoid putting her heel down because it hurt.  Each day,  I kept telling her it must be growing pains.  Kayla's tears would flow because there was no quick solution to her pain. My concern was starting to grow as well, but I tried to push it into the back of my mind.  On Wednesday this week, Kayla came home from school and couldn't use her left hand.  Ok... Now I'm really concerned.  I called St. Jude and they advised me to get her in to see an Orthopedic Doctor here locally since our next appointment there isn't until November. Tomorrow. I'll deal with it tomorrow.

The next day (yesterday) I received a copy of an email written from one of Kayla's IEP specialist  (who ADORES Kayla).  The email was sent out to all of her teachers.

Here is what it said:

Hi,
I met with Kayla today and she is reporting that she is having pain throughout her body.  It started in her legs and has recently moved to her arms and hands.  At the end of the day yesterday she couldn't even move her left hand.  If possible print out notes for Kayla so she doesn't have to write or print a peers notes for her to have.  Please allow her to use the computer to hand in writing assignments.  If you have any questions, I would be happy to meet with you or answer them through phone or email.  Thank you all for taking Kayla's needs into consideration

That stopped me dead in my tracks.  My breathing became labored and my anxiety heightened.  There is something about reading or hearing from her specialists that makes my concerns become realized.  Until then I can just push it off and blame it on something... she's tired, she didn't eat enough, she wants attention, hormones etc. etc...  The lump in my throat grew as I drove to work.  Luckily my first client works as a nurse in a local ER. She reminded me that if I call an orthopedic doc myself it will likely take weeks to get in,  but when her pediatrician calls them and marks it urgent things happen. Duh! I forgot about that.

So, right before I called her doctor, my cellphone rang.  It was the school.  Oh no!!! Kayla was in the office again because she was in SO much pain.  I talked to her on the phone and she told me it was so intense that she wanted to come home. So unlike her.  She never wants to leave school. This must be bad.

Of course, I immediately call Dr. Yamaguchi (God I LOVE that man!!) I knew they were about to go on break for lunch so I asked that he call me at his earliest convenience.  My heart was pounding.  I couldn't think straight.  I felt nauseous.   Finally the phone rang, "Pick her up and bring her straight here. I am working on getting her an appointment today with an orthopedic doctor".   "Ok. Breathe",  I tell myself over and over.  I put out an alert to my village... I don't know what I would do without my amazing friends.  The support and offers to drive us start pouring in and I remind myself how lucky I am.  I call Denny as I'm walking into the office to let him know what's going on and he starts to spin. I can tell. He is already trying to calm me down... but I can barely hear him through the pounding sound of my heart.

We are taken right back. Kayla is measured and weighed.  She has grown 1 3/4" since May... amazing.  Ok, so maybe it is growing pains?  Dr Y walks in with a smile that is so kind, his energy mellow, his exam filled with compassion and thoroughness.  Kayla had many tender areas: her wrist, both legs in many spots, her hip. During the exam, I get a call from the Orthopedic receptionist telling me that they can see her in 45 minutes. Perfect!! I'm taking deep breaths and saying a thank you prayer. The next thing I know, I hear Dr. Yamaguchi say, "Please excuse me and your mom for a minute while we chat".  Kayla looks a little concerned but follows the rules, as always, and waits for us patiently.  We walk into another room and both took a seat.  "Something is for sure going on.  Lets just hope it's a fracture, growing pains, or something we can fix and not ---" I interrupt him, "Osteosarcoma".  He freezes and looks into my eyes with empathy.  He says he is concerned. I tell him with honesty that I am SO scared... and the tears start to flow.  We hug and I promise to let him know how the Ortho appointment goes.  He loves her so much... We all do.

On the drive back, Kayla was sitting behind me and I couldn't hold back the tears no matter how hard I tried.  I put on some music to make it less obvious. I silently sobbed and felt like throwing up the whole way home.  My mind was swirling and I started to really panic.  "What if I'm going to be packing bags back to St. Jude tomorrow?  What about Denny? He is supposed to start Nursing School in January? "  I think of Kayla's friend Angiel, who we love and adore from St. Jude, she had Osteo. It's a HORRIBLE kind of cancer (and one of the top ones they see in re-occurrence from treating Kayla's type of cancer). I remember Angiel went through 21 rounds of Chemotherapy and was living there at the Target House for 2 years when we met.  Many kids end up with amputations.  It's something I quickly shove to the back of my mind.  Why is this drive taking so damn long?!?!  I get a call from my friend Rebekah insisting on driving us to the apt. I figure this is a smart move and I could really use a friend there with me.  I am really in no shape to be driving, it's an easy yes.  Once home,  I promptly take my Ativan and my breathing begins to slow down... I start to be able to wrap my head around all of this and calm down. Kayla looks at my face when we get out of the car and says, "Oh no... you are worried.... " Crap. I couldn't hide it like I did before, she knows too much, she knows my expressions at this stage all too well. I promised her we will deal with whatever it might be, but we are hoping it's nothing major.

Beck arrives and we drive a couple miles to Dr. Solomon's office.  My sweet friend brought Peanut M&M's. Perfect distraction. Before we know it, we are called back.  I asked to talk to the doctor privately before he sees Kayla.  Dr. S and his co-worker are very sweet.  Kayla shares an M&M with each of them.   When alone,  I explain Kayla's past history with Medulloblastoma, Surgery, 31 rounds of Radiation to her full brain and spine, and chemotherapy.  Then I'm asked, "How do you want us to handle giving you any information that we might find?"  I get a HUGE lump in my throat and barely choke out, "Give it to us straight, Kayla likes the truth."  I can't believe I just said that out loud.  It's like a horrible nightmare. I just want to run from this office, but I don't.   Once he starts examining her, he tells me he believes that it is quite possibly the painful result after such little growth for so long, and the fact that she just had this big jump that it could be the nerves and tendons that are being stretched beyond the normal capacity.  Osteo is more of a localized pain in one spot and she has many sore places.  This makes sense and so I take a deep breath.  I don't think to challenge him or demand an X-Ray because I want so badly to believe he is 100% correct.  Of course if it worsens or doesn't seem to go away, we are to call him immediately.  I meet Kayla over by the sticker box. Once the door closes she looks at me with frustration and says, "Mom, I don't buy it.  This is not growing pains!!!" Oh lordy. I didn't expect to hear that from her.  I ask her if she wants to talk with him more or demand tests? She tells me no.  And she is adamant that we just go.

When we pull up to our house, Carolyn and my mom are crying but quickly pull it together for Kayla.  Maggie and Audrey shriek and hug Kayla and are so grateful for the news.

For now, we will wait and see if this worsens.  I for sure, want St. Jude to check into this as well.  It's just another day in the life of a cancer mom.

Yesterday was another hard reminder to me as to how life can change in the blink of an eye.  One minute you are folding laundry or planning the next nights dinner, and the next you or your child could be fighting for their life.  Just because you might be "cancer free" or "in remission after 5 years being cancer free", It doesn't mean that you might not be suffering severe after effects, or a secondary cancer from treating the original cancer.  So we just continue to live as normally as possible and stay positive and laugh while we can!

September is Childhood Cancer Awareness month.  It's always a hard month for me full of reminders... Have you taken the opportunity to share how important it is to #GO GOLD  or know that Pediatric Cancer research only receives 4% of government funding?  Please help spread this word.

Please share my blog, tell a stranger, watch the short documentary that this amazing childhood cancer survivor made www.thetruth365.org or donate to St. Jude.  You can donate directly to our 3rd annual walk (which happened at the San Francisco Zoo last Saturday).

Our Amazing team who won't stop fighting!

Maggie, Kayla, Audrey, Lindsey

 Kayla and Kapri - Both local Medulloblastoma fighters!

SO grateful Donna and her girls were able to walk with us this year (it's only a 6 hour drive!) I love you Donna!!! You are amazing <3

6th grade homework

Glasses off, Hearing Aids out, Snuggling with "My Meow"  - KayRo OUT!

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

$2,366.00

I HAVE RAISED

$3,000.00

MY GOAL (change)

78%

11

DAYS UNTIL EVENT

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.  

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

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.