Young Lexi and her Granma Connie need our prayers! Need a miracle!

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   Connie Smithposted 13 years ago

   When my daughter finally got to the post office box today, we found the sweetest little gift, letter and picture from Lexi and Audrie, Habee's granddaughters, who are indeed Lexi's cheerleading team.  They sent a little doll, named Tracy, who is dressed up like a cheerleader.  When you push the button, it says a little cheer.  It is so funny, I crack up every time I hear it.  Tomorrow, I am going to take a little video of it and post it here.
   
   As I told Habee in a thank you email a few minutes ago, up to now, Lexi has not really been into dolls or toys, but I just went in the room and she was cuddled up with the doll. The nurse assured me that she did not do that, but that Lexi did it on her own. It was so sweet, I took a picture to share with all of you.   
   

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      Connie Smithposted 13 years agoin reply to this

      As promised, here is the world debut of Tracy the Cheerleader, cheering for Lexi!  Let's hear for Tracy!!
      
      http://www.youtube.com/watch?v=_sWQJKHIND0

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   SomewayOuttaHereposted 13 years ago

   nice...habee, you are very thoughtful...

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   habeeposted 13 years ago

   Connie, that pic brought tears to my eyes. I can't wait to show it to the girls! Here are my two Lexi cheerleaders:
   
   
   
   
   
   
   
   
   

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   habeeposted 13 years ago

   Connie, I have the girls today, and we just watched the video. Both of them want you to give Lexi a hug from them!

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      Connie Smithposted 13 years agoin reply to this

      Consider it done.  Thanks again to all of you.  That doll is so cute! We are all going around saying "We going to beat the (high pitch) Whoopie out of you, lol.  It is a very catchy cheer.

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         habeeposted 13 years agoin reply to this

         Lexi and Audrie have that same doll. That's where I got the idea.

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   Connie Smithposted 13 years ago

   Take a look at this!  Lexi is continuing to improve physically.  She tries so hard.  Her core muscles are getting stronger all the time.  This came by way of an accident when the nurse was moving Lexi and she grabbed the side bar by herself.  When she is not tired, she can sit up for a minute or two at a time.  Still a long way to go, but we never thought we would get here!  We are ecstatic. When we pick her up now, she is not like a dead weight anymore, and holds her head up pretty good.  It is all so very encouraging.
   
   

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      habeeposted 13 years agoin reply to this

      This brought tears of joy to my eyes! A real Christmas miracle!

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         Dorsiposted 13 years agoin reply to this

         Oh my gosh this just made the Holidays totally complete seeing Lexi sitting up! Go Lexi!!

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   Lisa HWposted 13 years ago

   Wow, Connie.  I can see why you'd be ecstatic.  How great it is to see Lexi sitting up like that.  She's an amazing little lady.     It's incredibly moving to see this picture of Lexi.  I'm just in awe here - and so happy for Lexi, you, and her mother.

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   Zsuzsy Beeposted 13 years ago

   Sorry am away from the computer. just have a little juice left on the playbook.  Thank you Connie for posting this miracle picture. Like Habee the picture brought tears to my eyes... definitely a Christmas miracle. We have to get even more and louder prayers going for this fabulous little girly. What strength and determination. I gotta go and show off this pic to my granddaughters and their friends they will all join Lexi's cheerleader troupe.
   My thoughts are with you all and off course the prayers are on-going.
   Giant sized bear hugs for Lexi
   
   Connie my best wishes to you and your family, may He grant Lexi a speedy recovery in the coming new year

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   Connie Smithposted 13 years ago

   I have great news!!  Lexi had her latest MRI last Friday and we got the results back yesterday.  Lexi's main tumor has shrunk a little bit more!!!  She also has two little tiny ones in the top of her head and at least one of those has shrunk as well!  We are just over the moon and feel so blessed.  I was very weepy after the results came in.  Lexi is continuing on with her chemo and we will have another MRI in two months. 
   
   Of course, the best news would be that it was totally gone, but, before she started chemo, her main tumor was growing at a rate of 20% a month.  This is a giant change and of course, we will take whatever we can get.  She continues to work on holding her head up, sitting and communicating.  We are hoping that, as the tumor shrinks and we get further out from the stroke, that she continues to move forward physically and cognitively.  Thanks, Cheerleaders, for being there for Lexi.  Go, Lexi!!!!

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   Zsuzsy Beeposted 13 years ago

   Thank you for the update. What amazing news Connie. Hugs to the little munchkin. We'll keep up the good thoughts and prayers.

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    Dorsiposted 13 years ago

    This is awesome news Connie and made my day. Thank you for letting us know! GOOOOO Lexi!!!

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    habeeposted 13 years ago

    I've been anxiously awaiting news on Lexi, and this was worth the wait!! YAY!!!!!!

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    Connie Smithposted 13 years ago

    Guess what our little girl is trying to do now?  Lexi does not want to lay in bed like a little patient.  She wants to sit up.  She showed me that the other day when I got her out of her chair and laid her in the bed to change her diaper.  All by herself, she lifted her head and shoulders right up off the bed!  I called her mother in there and I told her to show her mama how she did it.  I sat her up and then laid her down. She did it again, and the second time, she actually rolled onto her side! She has never been able to do that.  We have had to reposition her every few hours since her stroke.  Since then, she has rolled over at least one more time that I know of. This little girl is just awesome!

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       Zsuzsy Beeposted 13 years agoin reply to this

       What wonderful news Connie. Lexi is one tough cookie.  Thank you so much for sharing.
       good thoughts coming your way

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    Aficionadaposted 13 years ago

    This is just thrilling!  I have happy chills all over.  Give that little girl lots of hugs and kisses from her Cyber-Fan-Club.

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       habeeposted 13 years agoin reply to this

       Ditto! I said a special prayer for Lexi last night.

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    teaches12345posted 13 years ago

    I am sorry to hear of Lexi's battle. But, it sounds like she is a real trooper and making progress. Will certainly keep the family in thought and prayer. I look forward to hearing more positive news.

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    Zsuzsy Beeposted 13 years ago

    Sorry I haven't inquired about my favourite trooper in the last few weeks. I was under the weather and am just re-couping a little. 
    
    Although I haven't been able to post Lexi has remained in my thoughts and prayers.
    
    When you can spare a moment Connie can you post some news? I'm sure we're all anxious to hear of all the new great improvements.

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       habeeposted 13 years agoin reply to this

       Me, too.

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    Connie Smithposted 13 years ago

    Sorry to be slacking off, girls, but there really hasn't been much to report.  Until a day or two ago, Lexi has been doing pretty well. She has a slight infection, but nothing too serious. Her advancements continue to be slow since we have no physical or speech therapy (from the insurance co).  We have a speech therapist, Lexi's very special friend, Maria, who we've had since since August 2010, though she is not trained for Lexi's specific current problems.  Still, she comes to see Lexi (and will not take money any more from us!) to give her stimulation and really do more of an occupational type therapy as well as work with her a bit on other ways to communicate.  However, Lexi has inspired Maria to go back and take additional classes so that she can work with Lexi's condition as being trached and vented adds special difficulties for the speech therapist. As you can probably tell, Maria is a really good hearted person and Lexi stole her heart from day one.  Maria has cried buckets of tears for Lexi and though she knows she is not supposed to have "favorites," how could she help herself? Lexi used to say, "Ma-wee-ah is mah fwiend," but not ours.  How could Maria resist that cuteness? We are still working on insurance, who keeps denying us even with referral letters from doctors, so we keep sending them new ones....Lexi's next MRI is not for about three more weeks, so I will add more then.  As always, your concern for Lexi astounds me and warms my heart.

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       habeeposted 13 years agoin reply to this

       Thanks for the update. I've been eager to hear about Lexi.

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    habeeposted 13 years ago

    Connie, does Lexi have any vision left at all?

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       Connie Smithposted 13 years agoin reply to this

       That is the big question.  We are not sure.  We took her to an eye doctor a few weeks ago who dialated her eyes.  He thinks she might be able to see a little light. A few days ago at another appointment with a different doctor, she didn't react at all to light.  Sometimes, she just reaches out, unerringly, and grabs something, like she did in that story I told you about the bear, and sometimes (though not often) she looks at me like she sees me and we have that connection.  Sometimes she even gets a startled look on her face, which makes me think that her sight comes and goes.  Her new opthamologist doesn't think that is possible, but her neurologist does. I like to think the latter is right, and after all, he is the expert of the brain.  He says that it is possible that the tumor pressure on the brainstem is different at times, which theoretically means that she could have intermittent vision.  I pray that is so, because I hate to think of her in the dark always.

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          habeeposted 13 years agoin reply to this

          I hate to think that, too, Connie. Hopefully, as the tumor shrinks, her vision will return. Is that a possibility?

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             Connie Smithposted 13 years agoin reply to this

             According to the neurologist, yes....the opthamologist, no.  I always pick the expert, which in this case is the neurologist.  Her eye sight is not gone because she has a problem with her eyes, but with her brain stem. He is the expert in that area. Plus, he is saying what I want to hear and, of course, we need to focus on the future with positive minds.

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                habeeposted 13 years agoin reply to this

                I agree. I have my friends praying for Lexi, too!

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    Aficionadaposted 13 years ago

    I always appreciate these updates, Connie, even when there is little or no change.  It helps to know where to focus prayers and good thoughts.
    
    {([{([Lots and lots of hugs for all of you!!!])}])}

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    Zsuzsy Beeposted 13 years ago

    Connie, thank you. It has to be hard to have to battle with the insurance company. As I'm an optimist I know things will come right in the end and the insurance dudes will see error of their ways.
    
    As for no news with squirts condition... no news GOOD news and I bet Lexi's system is working hard at repairing.
    
    Prayers from our lips to HIS ears
    
    take care

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    Connie Smithposted 13 years ago

    Hi all, we have more good news!  Lexi's latest MRI, done yesterday, shows another slight shrinkage of her tumor. Before we started chemo (I think late July), the tumor was growing at a 20% rate per month.  That is very encouraging since it first had to stop that rapid growth and then go to work on the shrinkage.  We are very encouraged.
    
    Lexi is handling the chemo very well.  As many of you know, she is on only one of the four recommended chemo drugs (which included carboplatin, cisplatin and vincristine -- all with very serious side effects like hearing loss, kidney damage.....) Lexi is on the fourth only.  Etoposide can be administered orally, so she gets it through her G-tube. That advice came from three different experts in the area of ependymoma research who are members of the CERN Foundation (the Collaborative Ependymoma Research Network).  These three experts called independently, and freely on their own time, from Stanford, Cincinnati and Chicago after we sent them Lexi's MRI's and reports.  We had finally gotten more than one doctor to agree on a treatment plan for Lexi.  My daughter then went to Lexi's neuro-oncologist and told her what the treatment plan was.
    
    The reason I bring this up is because the CERN Foundation is having Ependymoma Awarenes Day on April 19. They are planning a butterfly release and butterflies are available for $25. Although Lexi doesn't benefit specifically, a butterfly can be purchased in the honor of Alexis Thomas.
    
    http://www.cern-foundation.org/Content.aspx?id=1006
    
    Members of the CERN Foundation include St. Jude, Stanford, Children's Memorial of Chicago, Harvard Cancer Center (and more) and in Canada, the Hospital for Sick Children.  Their goal is to freely share information and research to find a cure. We have personal evidence that they are freely sharing their information through the doctors who took the time to call, without recompense, to recommend a treatment plan for Lexi.  By the way, her neuro-oncologist is shocked that the Etoposide alone is working and Lexi has never been sick at all from the treatment.  Her hair started to fall out, but has come back and now she shows no sign of having current treatment at all.
    
    I have never been one for organized charity and have preferred to help individuals, who rarely see charity funds.  However, I do think this is a great cause and I hope that it continues to benefit Lexi by a cure for Ependymoma.  If you are able, we appreciate your support.  If not, your love and concern for Lexi is more than enough for us.  Thank you for being Lexi's friends.   
    http://www.cern-foundation.org/Content.aspx?id=1006

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       Woman Of Courageposted 13 years agoin reply to this

       God is Great.

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          Dorsiposted 13 years agoin reply to this

          Yes He is!

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    habeeposted 13 years ago

    That's awesome, Connie! I can't wait to tell Lexi and Audrie.
    
    I just purchased a butterfly in your Lexi's honor!

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       Connie Smithposted 13 years agoin reply to this

       Thank you. The butterfly release will be streamed via the internet, so maybe Audrie and Lexi can see watch it.  If we had known about the Cern Foundation from the beginning -- or even in the middle of all this, I really believe that the outcome to this point would have been entirely different.  Their website is the first and last website anyone needs who has received an ependymoma diagnosis.  It has the information, the trials and most importantly, the direction to turn to find the experts.  In hindsight, the diagnosis of a brain tumor calls for experts. We thought we had that with our pediatric neurosurgeons, but they were not experts in ependymoma, the type of tumor Lexi has. 
       
       A bit ago, as I sat typing, I heard Lexi "speaking" from her room.  She has a nurse tonight, but I went in to see her and patted her back.  In just a few minutes, she relaxed and I could tell she was asleep. I think she was calling out for me and once she knew I was there, she was okay.  I really have seen major improvements in her awareness level in the past month. It is doubly exciting because one of the reasons they did not want to remove the tumor before was her cognitive level.  Even though she can't speak due to having a tracheostomy, I know she's in there.  We have stepped up the physical therapy by having all Lexi's nurses involved.  The insurance company, believe it or not, will not approve PT for her.  We need to show them and everyone else that Lexi is NOT down for the count. I have no doubt now about it.

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          habeeposted 13 years agoin reply to this

          Any more news on her sight? Your comment about her "living in darkness" haunts me.

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             Connie Smithposted 13 years agoin reply to this

             I was just talking about Lexi's vision with one of her nurses last night.  It remains unchanged in that we do not know what is going on.  Both the nurse and I agree that we feel that she sees something -- at least some times.  However, we also both agree that there are many times that we know she is not seeing anything.  Could it be that, at those times, she is in a deeper place?  I think that is a possibility.  It could also be a possibility that she sees more at times than others, though the eye doctor doesn't think that is possible, as I said before.  Often when I think she is able to see, the room is darker than normal, if that makes sense, and I know it doesn't.  Both the nurse and I think she must be able to see shadow.  Is it likely that other light highlights us in a darker than normal room?  Too many questions and not enough answers.  Lexi has been trying to talk, but can't because of that trach.  How I wish she could get rid of it!

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    Catzgendronposted 13 years ago

    Sending special prayers to little Lexi .. and Teddy Bear Hugs!!!

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    Dorsiposted 13 years ago

    Such wonderful news about Lexi's tumor shrinking Connie. How hopeful this is. And she has you on her side, and age on her side, and it sounds like a whole host of doctors on her side. I am so so happy for all of you. Give Lexi a hub from all of us hubbers please.

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    Zsuzsy Beeposted 13 years ago

    Connie,I always appreciate your updates of Lexi's condition. The one about the tumor shrinking is really good to hear. Now the one about her vision is really disturbing me. I'm currently having major issues with my eyes so this really brings the 'dark' too close. Now that the tumor has started to shrink hopefuly it won't be too much longer for the pressure on her eyes to be released.      I will tenfold the focus of my prayers and good thoughts for Lexi.
    Strength to you and your family.

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       Connie Smithposted 13 years agoin reply to this

       I am sorry to hear that you are having some problems with your eyes, Zsuzsy.  We will send up prayers for you as well.  "Major" does not sound good, so we will double up on prayers for you as well.

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          habeeposted 13 years agoin reply to this

          Ditto!

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    Connie Smithposted 13 years ago

    Hey everybody!  Look at me!
    
    
    While you can clearly see that I am holding her up, she is doing very well on standing on her legs.  The same day, (still holding onto her) I got her to take a step with one foot, which would be great on its own, but I then got her to move the other foot! She took two steps! 
    
    She doesn't have balance yet, but she is really moving forward on sitting up on her own. She puts her hands out instinctively to help balance herself.  She also has gained much more control of those back and side muscles.  I can feel them when she tries so hard to sit up.  When I tell her to hold her head up like a big girl, she lifts it up.  The past few days, we have not had to put pillows or (we use little beanbags) stoppers to keep her head up while sitting in the big chair.
    
    She really is amazing and it is just hard to describe her advances lately.  I feel her.  It is like that little girl that I had last year is back, personality wise and all.  She just can't tell me.  Before, I knew she was in there and aware sometimes, but I think she is having much less episodes of drawing inward (which is the only way I can describe it...) and she is definitely letting me know that she wants attention.  We snoozed in the chair for several hours together earlier.  She loves to cuddle and is now lifting her arm up to put it around me.  That definitely makes my heart swell.

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       Dorsiposted 13 years agoin reply to this

       Oh my you and Lexi made my day too. I am so amazed at her progress Connie. Praise God.

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    CASE1WORKERposted 13 years ago

    Oh this has really made my day- what a lovely photo and so full of promise- the lord must be hearing our prayers

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    Catzgendronposted 13 years ago

    I am saying prayers for both Connie and Lexi.  Connie may you have the courage to stay strong and know that i am thinking of you.  Lexi honey, {{{{{{{ HUGS  }}}}}  to a very special little girl!!

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    habeeposted 13 years ago

    AWESOME!! The pic brought me tears of joy. Connie, I think of you and Lexi quite frequently. I hope you guys can feel the HP love!

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    Lisa HWposted 13 years ago

    Amazing, Connie.  As always, thoughts going out to you and Lexi and her mother.  It's incredibly moving and rewarding to know that Lexi has made the progress she has.  It does have a way of making the day of even those of us who only "know" her through you. I can only imagine what her progress must mean to you and her mother.

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    Zsuzsy Beeposted 13 years ago

    Oh Connie thank you for posting that totally amazing picture. I'm in 'happy' tears... what an amazing little girl.
    Hugs and good thoughts coming to you all.
    On-going prayers for continued progress from our lips to HIS ears

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    Connie Smithposted 13 years ago

    
    
    Hey everybody!  I am doing great!

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    Patty Inglish, MSposted 13 years ago

    This is good to see, that Lexi is up and going again. She looks pretty good and she's still on my prayer list.  This Holy Week is a good time for more miracles. Happy Easter and Resurrection Day!

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    habeeposted 13 years ago

    Wonderful, Connie! I'll share the pic with my Lexi and Audrie.
    
    Happy Easter!

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    Zsuzsy Beeposted 13 years ago

    Amazing, seeing how good Lexi looks has just made my day. Thank you for sharing Connie.
    All of you have a happy, hoppy Easter.

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    Eric Newlandposted 13 years ago

    Connie, I'll be prayIng for you, your family, and Lexi. I hope she continues to improve, that you can stop this cancer and give her the best life she can possibly have.
    
    Or even a life that should be impossible. Miracles really do happen, I can tell you from experience. Wishing you the best.

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       Aficionadaposted 13 years agoin reply to this

       
       I love the way you said that, Eric!  All I'll add is "Amen, I'll keep praying too."  [She looks terrific!  Hugs to that cutie pie.]

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    Connie Smithposted 13 years ago

    
    
    
    Happy Easter, everybody!
    
    
    
    p.s. Lexi's mama said she got very excited when she got her Easter basket.  Lexi is also going to get an organic lollipop today, a very special treat that she hasn't had in a long time. Hope everyone has a beautiful day!

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       habeeposted 13 years agoin reply to this

       What a precious little Easter bunny!!

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          prettydarkhorseposted 13 years agoin reply to this

          Plus one. It is good to know she is happy, cute little one!

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       Aficionadaposted 13 years agoin reply to this

       
       What an adorable Easter gift!  Blessings to all of you!

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    Connie Smithposted 13 years ago

    As a special treat from the Easter Bunny today, here is a couple more pictures of Lexi, including one of her having her lollipop.   
    
    
    
    

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    Zsuzsy Beeposted 13 years ago

    Connie, thank you so much for the update and the fabulous pics. The little Easterbunny looks amazing.
    Keeping Lexi and the rest of your family in my ongoing prayers.
    Many, many giant sized hugs to that precious child.

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    Patty Inglish, MSposted 13 years ago

    She certainly looks much better. More healing to come!
    
    And hi, Zsuzsy Bee!

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    Dorsiposted 13 years ago

    Ohhh how cute. Happy Easter Lexi! Hello grandma Connie!

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    Connie Smithposted 13 years ago

    Hi everyone!  Just wanted to update you all on Lexi.  She is having her next MRI on Thursday and we will have the results the following Tuesday.  We feel really good about it because she is doing so well right now.  She is continuing to show her wants and needs more and more every day, using her hands a bit (at least to touch each other), trying to show where things are, like her mouth, etc.  Though she can't express herself vocally, I really do feel that old personality coming back.  It is exciting!
    
    I forgot to mention!  Lexi's eyelids are starting to move more!! She is not doing an outright blink, but before her eyelids did not move at all.  Now, her actual eyeball moves more and the eyelid is doing a half-blink sometimes.  It is very encouraging.  We do not know if it is from the massage that she is getting every time she gets the eyedrop ointment (at least every few hours) or the new additional acupuncture that she is getting in her forehead.  Within days of starting both (within a week of each other), we noticed an improvement.  While it would be nice to know which is the more effective, we are just in alt.
    
    Here is the video from CERN's butterfly release. CERN is the Collaborative Ependymoma Research Network.  There were a few donations and, for those who donated to ependymoma research, we sure appreciate it.  While the money goes to places like St. Jude, unlike a regular St. Jude donation, it is used strictly for ependymoma research instead of general cancer research.    There weren't a whole lot of butterflies, but I thought it was moving: http://www.youtube.com/watch?v=VAm080DtpTcp
    
    Also, here is a new picture of her. The weather was great, so her mother took her and her brother for a walk, then they played sidewalk chalk.  Of course, Lexi cannot really play, but her mother held the chalk in her hand. She does get excited (though it doesn't look like it, lol) and we can tell that for sure.
    
    
    

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    Catzgendronposted 13 years ago

    Thank you for sharing that beautiful video with us.  Please know that my thoughts and prayers are with you and all families struggling with this disease and hope a cure is just around the corner. HUGS!!

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    habeeposted 13 years ago

    Thanks for the update and the video! I'll share it with the girls this afternoon.

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    leahleflerposted 13 years ago

    I am so glad she is blinking and getting some eye movement back - she is such a beautiful little girl. The video is gorgeous, hopes and prayers that a cure is found for this disease!

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    prettydarkhorseposted 13 years ago

    I am sending best kisses to you Lexi!!

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    Dorsiposted 13 years ago

    Connie, she looks really good. I can see a huge visual improvement from months ago. I'm going to take a look at the video in a few minutes. Thanks for the updates and photos of Lexi.

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    Mighty Momposted 13 years ago

    Inspiring changes. I hope they keep adding up for Lexi.
    And she's downright adorable, too!

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    Zsuzsy Beeposted 12 years ago

    I was away for a few days and came down with internet withdrawal pains. Connie these great new pictures of squirt have 'recouped' me. Thank you for that.
    Keeping you all in my thoughts and prayers. Special hug to Lexi.

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    Connie Smithposted 12 years ago

    Thanks all for the kind comments.  The MRI was done and the results will be in on Tuesday. 
    
    Zsuzsy, we would like an occasional update on your situation as well.  Hoping that your eye problems are not as serious as it once sounded.  Please let us know how you are doing.

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    Connie Smithposted 12 years ago

    Well, we had good news and mediocre news.  Lexi's tumor has not shrunk this time around, which was very disappointing.  The good news there is that it has not grown.  Of course, we are so happy about that, but we want it to go away!! 
    
    The great good news is that Lexi also went to the eye doctor and he said her eyes are better!  We have been diligently putting eye ointment in and it has mostly healed her corneas! Her left eye (I think) is not quite up there with the right one yet.  I didn't get to go this time because of finals.  I really had wanted to, because I wanted to see what he thought about Lexi moving her eyes more.  My daughter said she was mostly asleep there and only there a few minutes, so he didn't get to see that part.  Aaaargh!  That's the reason I like to go.  I would have made sure she woke up, because I think it is really important to get the doc's input on that. I don't believe that she can see right now still, but hoping that can happen eventually.

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