Away we go!

19 Dec

A few days after Lauren’s diagnosis our Neurologist called to let us know that a spot was available for Lauren in a Krabbe research study. The study was being conducted by a world leader in the research of rare neurological diseases. The doctor leading the study would be able to give us more information on the disease as well as a second opinion with regards to Lauren’s candidacy for a bone marrow transplant.

Steve and I were very excited to have the privilege to take part in the study and accepted the spot. So began a crazy week of obtaining passports, filling our forms, paperwork and running back and forth between the passport office and home. By Friday our adrenaline was pumped to the max, everything was in order and we were ready to go, we would just have to wait until Sunday for our flight.

Our Angel on Earth - Thanks Melanie!

On Saturday my friend Melanie who happens to be a very talented photographer came by to photograph Lauren. It turned out to be a very fun morning and thankfully Lauren was cooperative. Lauren decided that she preferred taking a serious photo shoot and didn’t lend many smiles, but in the end the pictures were absolutely beautiful. You can check out Melanie’s website at http://www.melanieWAND.com or on her Facebook page https://www.facebook.com/pages/MelanieWAND-Photography/201759943187883

Now back to the research study…. Sunday arrived and we were packed and ready for our new adventure. We got in the car and headed to Burlington Vermont. Why Burlington, Vermont? Well, so that we could go to the Christmas Tree Shop of course! Just kidding, and although we did manage a quick visit to our favourite store we were flying out to Pittsburgh from the Burlington Airport.

I was a little fearful of flying with Lauren since I’ve witnessed babies crying their lungs out on planes before, but as it turns out Lauren is a great traveller and barely let out a whimper on any of the flights. We even had a few fellow travellers stop to tell us what a great baby she had been.

We arrived in Pittsburgh on Sunday night with a free schedule, we checked into our Hotel and relaxed a little. I have to say that Lauren seemed really excited about the trip and our hotel. Her eyes constantly scanning our surroundings, looking back to me every so often as if to see if I was appreciating it all as much as her.

Monday we woke up early for Lauren’s MRI appointment, and funny story – we actually slept in about ten minutes and missed our taxi ride to the hospital. Not so bad though, because as it turns out the hospital was only a 5 minute walk from the hotel. It was this first walk that made me realize that we had really come to the right place. As we pushed Lauren’s stroller up the steep hill to our appointment we couldn’t help but notice that we had walked by a several other clinics and hospitals, we were in a medical wonderland! Our hospital had marble floors and resembled a high end hotel.

The MRI went well and we were soon off to meet the Research Team (led by Dr. Escolar) who would evaluate Lauren. Although the day was packed with additional tests and observations the time flew by. We were getting more information and attention than we could have dreamed of, being a part of this study was truly a gift.

As good as the day was, it was also difficult because we were confirming that there really was no cure or treatment that could help Lauren beat this disease. Lauren was not a good candidate for a bone marrow or cord blood transplant – it would only stop the disease from progressing further. What that would mean for Lauren is preserving her vision and hearing, she would never regain any of her lost motor skills and would remain unable to communicate, move or care for herself. The transplant would also require chemotherapy and a long hospital stay for recovery.

On Tuesday, we had the opportunity to meet a beautiful family with two gorgeous sons Marshall and Michael who had been afflicted with the same form of the Krabbe’s disease that Lauren has. The youngest boy Michael had received a transplant pre-symptoms, but the road the recovery has not been easy, there were complications and at one point the family feared that they would lose their little boy. He is doing better lately and is working on catching up with other little ones that are his age.

Marshall like Lauren did not have the chance for a transplant. He is about two and a half and has unfortunately experienced the majority of symptoms that are listed for the disease. He has lost his vision and hearing, he doesn’t make sounds and keeps his eyes closed.

I felt like there was a tight ball in my throat as we visited with the boys parents. I wanted to break down into a mess of tears and hug them both. Lauren is still early in the progression of disease, and although I have already experienced a great deal of pain, sitting in the restaurant with this family made me realize that I still have no concept of the gravity of it all.

I pray for continued strength for this family – oh and I should mention that Michael and Marshall have three other siblings. I cant even begin to image how difficult it must be to stay strong and care for other children while having a child with this disease.

You can check our the links below to learn more about Michael and Marshall

http://www.caringbridge.org/visit/marshallwilson09

http://www.caringbridge.org/visit/michaelwilson2010

Visiting with Michael and Marshall's Parents

Lauren and Mommy - enjoying our first plane trip together

Super Friends Club!

Lauren and Mommy - Lounging in our Hotel Room

We love the fun green pillows at the Wyndham!

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15 Responses to “Away we go!”

  1. Lillian Mansour December 20, 2011 at 3:27 AM #

    Amanda you are an amazing young women, I truly admire your courage. you are also a great writer. Lots of love Lillian & family xxxooo

    • melody chipley January 3, 2012 at 6:41 PM #

      Praying for you and your family!

  2. ann morfitt December 20, 2011 at 7:18 AM #

    Lauren,

    You look like you had fun dressing up as an angel in your feathery boa and pinky-purpley necklace. Melanie waved her Wand, and presto! There she appeared, Lauren, the most beautiful auburn earth angel you ever saw.

    After I saw you with that green giggle Wyndham pillow, I asked Santa for one for Christmas.

    Thanks for sending the pictures of your 2 new friends, Michael and Marshall. Did they get to fly in an airplane too?

    Did your cousins Julia and James miss you?

    Love, Ann

  3. Ken Roberts December 20, 2011 at 2:49 PM #

    So pleased that your visit with Dr. E went well & that you were able to link up with another Krabbe family. That is so important.
    Best wishes for Christmas.
    Ken. XX

  4. Tiffany December 20, 2011 at 7:32 PM #

    I am sorry to hear Lauren is not a good candidate for the study. My wish for the new year is that there are great advances in the research into Krabbe’s and that Lauren, and her new friends, as well as all the other babies out there affected by Krabbe’s can benefit and live a healthier, happier lives.

    The photos by Melanie are amazing. All of them are so special-You know the saying a picture paints a thousand words-these ones truly do…

  5. Camara January 3, 2012 at 6:30 PM #

    Hi,
    My name is Camara. I lost my daughter Anaya to Krabbe on November 13, 2011. Just weeks ago. She lived to 26.5 months. My current goals are to advocate for universal newborn screening, and help familie’s who are experiencing this disease. I am also an online Fundraising Coordinator and help families raise money for treatment or to stay home with their children to care for them and spend time with them before they pass.

    We chose to give Anaya quality of life. You can read my blog at http://www.healinganaya.blogspot.com

    I’d sure love to talk to you if you are open to it.

    You can email me or call me. I’m also on facebook.
    http://www.facebook.com/camara.cassin
    camara@fundrazr.com
    778-997-0593

    Lots of love from one Krabbe mommy to another,
    Camara

  6. Kate January 3, 2012 at 7:15 PM #

    The photos made me smile – made me remember my niece’s smile. it is so beautiful. My niece Emma, is about 2 1/2 years old and has been treated by Dr. E. If you need anything – information about Krabbe, being a family member impacted by Krabbe or anything from NJ, please feel free to contact us!

    Best,
    Kate Daniels

    • lifewithlol January 6, 2012 at 5:41 AM #

      Thank you Kate, Lauren is also being followed by Dr. E. Did Emma have early onset? Thanks for taking the time to post.

  7. Jennifer January 3, 2012 at 11:53 PM #

    Your all in our prayers!

  8. Stephine January 3, 2012 at 11:56 PM #

    You are such a beautiful girl and it’s such a tragic story. I lost my son in August. He was 3 months early and got an infection in the NICU. I still cannot imagine the pain you are going through. I hope that you have many more years with your sweet baby girl.

    • lifewithlol January 6, 2012 at 5:39 AM #

      Stephine I’m so very sorry for the loss of your son, I can’t imagine your pain. Thank you for taking the time to comment on my blog post.

  9. Jesi January 4, 2012 at 3:22 AM #

    to ALLL of you, i truly cant imagine what you have went through losing your children, i sit on the couch beside my just over two year old little girl realizing just how lucky i am, and it makes me soo sad that everyone doesnt get that oppertunity to see a life develop and grow… my love and thoughts are with you alll, lauren is the most beautiful little girl i have ever layed eyes on… and for any child to have something like this happen is terrible!!

  10. Jesi January 4, 2012 at 3:24 AM #

    and it is only the 2nd at 915 pm… not sure about the date it sounds terrible that i would be up with my daugter at 322 am, just to clarify

    • lifewithlol January 6, 2012 at 12:49 AM #

      Hi Jesi,
      I think that I fixed the time issue for comments going forward 🙂 your comment made me smile.

  11. lifewithlol January 6, 2012 at 5:44 AM #

    Thanking everyone for their beautiful messages and prayers.

    Love,
    Amanda

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