Friday, September 25, 2015

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 herShe 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!



12 comments:

  1. Holding Kayla and all in our hearts, sending strength and love, cheered by your words "we just continue to live as normally as possible and stay positive and laugh while we can!" Love to all from your PA family.

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  2. I am so sorry to hear that you and your family are having such a scare. All you can do is take it one day at a time. It's good advice for us all to "stay positive and laugh while we can". I hope Kayla get some pain relief soon.
    xoxo

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  3. wow Annie, what a roller coaster. I will keep Kayla in my prayers that she continues to be NED and that her pain is from growing ONLY. Big hugs to you all. xoxo

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  4. Oh Annie, I'm so sorry...I am holding you all in my thoughts and prayers and sending love and light! You are SO strong Annie, you all are, and I am in constant awe. xxxxx

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  5. Oh Annie, I'm so sorry...I am holding you all in my thoughts and prayers and sending love and light! You are SO strong Annie, you all are, and I am in constant awe. xxxxx

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  6. My heart is breaking for you as I read your words. I pray that this is nothing more than what the doctor said and that Kayla finds some relief soon from her pains. Sending you lots of Love. Lannette

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  7. Did they at least prescribe physical therapy to help stretch the muscles and tendons to give the poor girl relief? Praying for her.

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