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Life is like a box of chocolates…

May 22, 2011

You NEVER know what you’re gonna get.  Amen…..

The past week has been a whirlwind of activity…none of it expected, all of it scary.  Let me start at the beginning and bring you all up to speed.

On Sunday 5/15 Taylor woke up in the middle of the night with a massive headache and vomiting.  I thought she had a migraine given my history and the fact that she has had two in the past.  I gave her Ibuprofen and she tried to sleep.  On Monday the headache was just as bad and she was still vomiting, so I took her to the pediatrician.  He agree that it was probably a migraine and prescribed some anti-naseau medicine and ibuprofen.  Nothing helped.  So Tuesday morning I called the pediatrician and he said take her to the ER.  We expected that she’d get a shot of Imitrex or something similar for migraines.  When we got there they did an MRI and the results were devastating.

Taylor has what is called an AVM (arterial vascular malformation).  It is something she was born with.  It is not a tumor, not cancer. It is a jumble of arteries and veins that didn’t form properly in-utero.  She could have lived her whole life with this and we never would have known.  The AVM had started bleeding which is what was causing the headache and vomiting.  The ER doctor told us what they found and immediately called Stanford Lucille Packard Children’s Hospital.  They sent down a pediatric transport (think ambulance with two ICU nurses). They took us, lights and sirens, to Stanford.  We were immediately taken to the pediatric ICU where Taylor stayed until Friday.  In the ICU they did another CT and an Angiogram to identify the size and formation of the AVM.  It is 4×6 cm (pretty large) on the left side of her brain.

The good news…..she is fine.  The bleed didn’t cause any damage, her neurological functions are perfect, she is talking, walking and being her normal self.  They know exactly what these tings are and how to treat them.  Once it is gone it won’t come back.  These are the best Dr. in the world for this.  She is in great hands.

On Thursday afternoon she got another major headache while in the ICU.  The Doctors weren’t sure  what was causing it and they feared the AVM had started to bleed again.  So they rushed her in for another CT to see if the bleed had grown. Rick and my Mom were with her as I had gone home to shower and change.  My girlfriends had asked me out to lunch and right when I got home Rick called me and said “you had better get back here.”  I called Karla and she came back immediately and drove me to Stanford.  On our way, we had a flat tire on Hwy 85.  Yes…ridiculous, but true.  My friend Lori swooped down and picked up us from the center median on 85 and whisked us up to Stanford.  When we got there they had confirmed that the bleed had not returned.  It was just a headache… something we are going to have to get used to.

Taylor is now out of ICU and on the regular floor.  She is taking this all really well.  She’s had to miss some really fun stuff and will have to miss more.  That makes her sad, which makes her cry, which gives her a headache…sigh.

The hard part – well, actually, all of this is “hard” – but the struggle for us is that her treatment is going to take a while.  They need to stop the blood flow to the AVM so they can remove it.  To stop it they need to do several procedures similar to Angioplasty, but on the brain.  She will have several of these over the next few months…maybe years…that’s the challenge.  We have no idea how long this is going to take.  They will do as much as they can do safely during each procedure.  Then after the procedure we’ll see what the next step is.  We have a vision of what will happen but no specifics.  As you can imagine Rick and I (two virgos to our core…) are rather uncomfortable with this.  But….it is what it is.  She is fine and we will get through this.

Rick’s sisters, Deb and Marilynn, are both nurses and have been amazingly helpful as medical translators.  They have been with us in all the meetings and rounds with the Doctors.  My Mom and my sister, Pamela, have been here to drive everyone around and stay with Taylor while we’re talking with Doctors.  Our friends have been so supportive.  We don’t know what we’d do without you all.

My plan is to keep you all informed thru the blog.  Feel free to comment and Rick or I will get back to you when we can.  My sister Pamela and our neighbor Karla are acting as the central points of contact.  So if you have questions feel free to reach out to them.

Thanks for your positive thoughts and prayers.  We love you all.

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15 Comments leave one →
  1. Lynn Johnson permalink
    May 22, 2011 8:04 pm

    Laura…bless you for taking the time to post updated information about Taylor….I can’t begin to imagine what you are all going through – especially Taylor, but I do know that she is one lucky little girl, getting the best possible care and medical treatment and having two fantastic parents, family, friends and friends of family….EVERYONE praying for her to be well – even though it sounds like it may not be ‘soon’…she will be well and that’s all that matters. Sending you all my love and appreciation for understanding how much we all care and thank you for your blog. Love, Lynn…ie xoxoxoxo

  2. Rich Seger permalink
    May 22, 2011 8:20 pm

    What a whirlwind time for you guys! So glad Taylor is ok. The Segers thoughts are with you guys.

    Thanks for keeping us posted.

    Michelle, Chloe, Evan, Rich

  3. Kaaren Babb permalink
    May 22, 2011 8:25 pm

    Oh my gosh……..we have been in AZ this week at graduation, so I just now heard. This is so scary, and having been through a grandchild with head trauma, I can empathize with how you must be feeling. Really, though, if it had to happen, it sounds as though it was in the best possible circumstances, and she is in for sure, the best hands in the world. I will find out about how to send a card to her…….Love and big hugs to all. How is Riley holding up?

    xoxo, Kaaren

  4. May 22, 2011 10:08 pm

    Got chills reading your post…can’t imagine the levels of realization you have been going through as the diagnosis and treatment were revealed to you…sending the warmest of thoughts to you all as you navigate totally unfamiliar waters…and a HUGE hug to Taylor!

  5. sindy permalink
    May 22, 2011 10:42 pm

    oh laura I’ m so sorry. It is impossible to tell u how sad and worry this make me feel. I’ll be praying for taylor and for your family. I know that you are very strong,but as a mother I can imaging how hard this must be. please said hi to taylor for me and if you need anything let me know please.

  6. Dana Packard permalink
    May 23, 2011 12:58 am

    Laura – My heart sank when I read this. My oldest son was born with heart defects and has had multiple surgeries. I’m so sorry your family is going through this. It can feel terrifying and overwhelming but you will get to the other side of it. The healing ability of children is amazing! And you couldn’t ask for better doctors and staff! Remember to take care of yourself so you can take care of your daughters. Keep the rest of the things in your life simple right now and take advantage of offers for help – even for basic things! Thinking of you!

  7. Christine Throm permalink
    May 23, 2011 9:33 pm

    God Bless you guys! I love seeing the picture of Taylor in her prom dress. She is such a trooper. Don’t hesitate to ask if you need anything. It sounds like things are going well and we will be praying for you all. Taylor and Riley have the best parents! Love ya!
    Christine, Terence, Alex and Elizabeth

  8. May 24, 2011 12:45 am

    Wow, I haven’t had this blog in my feed for a while and now this! I’m relieved to hear that Taylor is doing well. I’ll keep you guys in my thoughts and prayers here in España.

    Hang in there.
    – e

  9. Michelle Felipe permalink
    May 24, 2011 8:49 am

    You don’t know me, but I was contacted by someone who knows your family. Last September my husband was rushed to the hospital with the same thing Taylor has. I know it is devastating news but I have seen my husbands recovery and how well he is doing now and it sounds like Taylor is doing great. If I could offer any advice at all it is to rely on your family and friends and lean on them. You don’t realize how much of a toll this kind of thing takes on you. I will be praying for you and if there is anything my husband or I can do please do not hestitate to contact us.

  10. Nancy Erba permalink
    May 24, 2011 6:54 pm

    Laura
    I can’t even begin to imagine how you are feeling….. I’m so sorry that this has happened to sweet Taylor, but so glad the prognosis is positive! Please let me know if there is ANYTHING I can do. You will all stay on my prayers!
    Nancy

  11. Holly Garcia permalink
    May 25, 2011 9:35 am

    LAURA!!!! Oh my – what an ordeal. The good news is…you found it, you’ll fix it, and you’ll all be OK and stronger for it! I miss you and my thoughts are with you all. Love to you all – Holly

  12. Shawna Todd permalink
    May 25, 2011 10:32 am

    Laura,
    What an ordeal for your family to face. Our many prayers go out to all of you. It was comforting to read that there is a positive prognosis for this medical situation and that Taylor will be healed. You have a fabulous support group……Hang in there you wonderful Mom you!
    Hugs and love,
    shawna

  13. May 25, 2011 6:05 pm

    It is true that from a box of chocolates, we never know what we’re gonna get. Sometimes we get fruits and nuts, but no matter what it is, you know that it will always be sweet. Just like how you create your life, with love thrown in for good measure, every bitter pill is easier to swallow.

    Your family is strongly bound by love. Taylor will be all right. And so will you, Rick and Riley.

  14. Aurora Belarmino permalink
    May 25, 2011 7:51 pm

    My heart goes out to you and your family.

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