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

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   Zsuzsy Beeposted 13 years ago

   So glad to hear that Lexi is back at home. Nothing ever feels quite like being at home. Surrounded by the familiar sounds, sights etc.
   On-going prayers and good thought coming your way.
   ZsB

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   Jen's Solitudeposted 13 years ago

   It is so good to get a peek at Lexi and to know she is home once more. So the next step is the oxygen chamber and then the chemo? I imagine it will be at least a week or two?
   
   Get some rest as often as you can. You all seem to have a good schedule in place for her care, but still I can't even imagine how tired you all must be. 
   
   Thanks for the update and please give Lexi a gentle hug for me! (((LEXI)))

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      Connie Smithposted 13 years agoin reply to this

      She has logged several weeks already at hyperbaric oxygen.  I am not sure if she will go back on Monday yet or not.  Her oxygen saturation levels are fantastic, especially for someone who just went off the vent, and she is on the lowest level of oxygen that her machine puts out.  However, she does need that small bit.   Even with her great levels, she is needing suctioned constantly still.   We will know more about the chemo on Monday or Tuesday.  We are switching hospitals to do the chemo and then, Lexi should be able to go to the new hospital, All Children's from here on out for ER, etc.  Up to now, because her case was complicated and they had not treated her, they simply put her in an ambulance and sent her back to St. Joseph's.  Now that she will be a patient, they won't be able to do that.

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         Dorsiposted 13 years agoin reply to this

         Thanks for keeping us updated. Although I don't always post I have followed Lexi's story closely here.
         My little neighbor girl and I pray for Lexi and pray for strength and comfort for all of you.
         God Bless all of you. And to the hubbers here that contribute with love... you are just awesome people...I am in awe of all of you....

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            Connie Smithposted 13 years agoin reply to this

            Me, too, Dorsi!  This is an awesome group of people.  They (and you) give me faith.  I will never forget how all of you have taken Lexi into your hearts.

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   Jen's Solitudeposted 13 years ago

   Could someone post a link to Lexi's Facebook page for me? Thanks!

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      Connie Smithposted 13 years agoin reply to this

      Lexi doesn't have a Facebook page, but I thought about making one for her, I just never have.

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   Tom Koeckeposted 13 years ago

   Hi Connie. I have been following this thread even though I haven't written in it for a while. Each time I start a reply, it always seems so sappy.
   
   Anyway, at the risk of sounding sappy, I want you to know that I have kept you and Lexi (and your family) in my thoughts.
   
   Everything I start to add to that makes me not want to hit the submit button again.
   
   I'll just leave it with I admire you.

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      Connie Smithposted 13 years agoin reply to this

      Thank you, Tom.  So very sweet of you.  I would never think you are sappy and I appreciate your comments more than you know.

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   Patty Inglish, MSposted 13 years ago

   Lexi's eyes and facial expression look more focused, to me, in the last photo you posted. That's a good sign, if it's what I'm seeing correctly. Best wishes and prayers in any case!

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      Connie Smithposted 13 years agoin reply to this

      You are observant, Patty.  Since the hyperbaric treatments, her eyes have straightened out some.  After the hemorrhage, they were both very crossed.   I had to laugh at a little girl, approximately 5, who peeked in her stroller at her at the doc's one day.  She says, "Aw....that's so cute!  She's looking at her nose!"  Some days they are more crossed than others, but, thankfully, straightening out a bit.

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   Jen's Solitudeposted 13 years ago

   I'm so glad Patty made that comment. I thought the same thing but didn't include it in my comment because I wasn't sure about writing it. It hit me the first time I viewed her picture though. If that can be attributed to the oxygen than I'm even happier she is getting back to the treatments.

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   Zsuzsy Beeposted 13 years ago

   Prayer from our lips to His ears. Thinking of you.

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   Connie Smithposted 13 years ago

   Thanks, Zsuzsy.  Lexi was rushed to the hospital this morning by ambulance.  Her breathing wasn't right.  She has the same problem as last time, extremely high Co2 levels and a bacterial infection in her trachea.  I questioned the fact that they only had Lexi on antibiotics for 2 days at the hospital and 3 days at home.  Augmentin usually has a 10 day regimen. Of course, I questioned Lexi's mother instead of the doc or pharmacist.  Obviously, I need to direct my questions to the appropriate party. The good news is that though it is same problem, different week, we also have her in the new hospital, All Children's!  We were able to get her in since she was going to be going there for chemo this week anyway, today, actually, if she was doing okay.

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   Aficionadaposted 13 years ago

   Here we'll pray fervently for that precious little girl and for all of you.

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    Jen's Solitudeposted 13 years ago

    Oh My! So sorry to read she is back in the hospital for the same reason, but relieved to know she is now in Children's Hospital. I hope they treat her effectively so that the infection heads out of her system for good. Will check back to see how she is doing.

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    Patty Inglish, MSposted 13 years ago

    This change of hospital could be a God-send and I pray it is. Best wishes to you there.

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    Lisa HWposted 13 years ago

    Connie, I've been watching any updates, and thinking of Lexi (and you and her mother) all along.  Like others (I'm guessing), I don't always post because I go back and forth between not wanting to be "out of place" and yet thinking it's good if you know how many people are thinking of Lexi and wishing her (and you) a good outcome.  Still, of course, hoping things go in the right direction for Lexi.  Sorry to know there's been this morning's scare.  Anyway, still watching, hoping, thinking of her (and you), and sharing any updates to a couple of my close friends/relatives who now also know her story and have sent their own prayers on her behalf.

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    Connie Smithposted 13 years ago

    Lexi is doing better and should get to go home today.  We have a lot of decisions to make on whether to move forward with the chemo, etc. and no time to make them.  My daughter has sent out Lexi's records to several of the top 10 hospitals in the country, to go before their tumor boards.  What we are looking for is an actual consensus on a future treatment plan, if any.  The docs we have are at odds over it and we need guidance. More and more, it appears to me that, without that miracle, which, so far, has not been forthcoming, that Lexi's window of opportunity has closed. 
    
    On a good note, two days ago when I came into the hospital to see Lexi, she was more animated and seemed more aware than I had seen her since the stroke.  I know I've said that I thought she was mouthing "NaNa" before, but due to the combo of her trach and vent (technical info omitted), she was able to make sounds.  She seemed so aware that I was astonished.  Of course, the next day, they promptly gave her Ativan and she has not been like that again.....take a look at this:
    
    http://www.youtube.com/watch?v=MVQC6V85n7M/

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    Zsuzsy Beeposted 13 years ago

    Connie, thanks for the update. Keeping you all in my prayers. Hugs to Lexi.

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    Connie Smithposted 13 years ago

    I finally made Lexi a Facebook group.  She already has some friends!  The group is called Lexi's Friends and here is the link:
    
    http://www.facebook.com/home.php?sk=gro … 693627828/

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       Dorsiposted 13 years agoin reply to this

       Hi Connie, I couldn't get in on that link. Can you also post your facebook link so I can friend you? I thought I was your friend there but guess not!!
       Glad that these hospitals are all looking at Lexi's case. The more eyes the better...

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          Earth Angelposted 13 years agoin reply to this

          Blessings, warmest healing thoughts and prayers always, Earth Angel . . .

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          Connie Smithposted 13 years agoin reply to this

          When I clicked on the link, it went straight to my own Facebook account.  My FB name is Connie McCampbell Smith.  I'm pretty sure that I am the only one of those, lol, so you can search for that.  I am going to try to post Lexi's link again.  She already has almost 160 friends!  She is getting more popular by the minute.   
          http://www.facebook.com/#!/home.php?sk= … 693627828/

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    Connie Smithposted 13 years ago

    There probably isn't anything that makes me want to be younger than new technology.  Even though I am not unintelligent, I just do not pick it up like I used to.  I am sorry for not being able to post the right link.  I keep going there and copying the url, but when I post it here, it goes straight to my account.  If you join mine, I can get you in there from it or you can probably search for it.  The name of Lexi's group is called Lexi's Friends.  I don't know why the group thing has to be so complicated (or any thing else for that matter, lol).

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    Connie Smithposted 13 years ago

    We have had one neurosurgeon in Chicago say that they could operate.  No one can get all of the tumor, we realize that.  We are waiting to hear from another one and then, hopefully, will figure out what is going to happen.  One thing is certain, something has to.  Lexi's tumor is growing rapidly.

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    Zsuzsy Beeposted 13 years ago

    My prayers are with you as always.

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    Connie Smithposted 13 years ago

    Hi Zsuzsy and thank you.  We finally have a plan....We contacted most of the top 10 children's cancer hospitals in the country by sending them Lexi's MRIs and other pertinent information.  We requested that her case go before their tumor boards.  A tumor board is a meeting of the experts (oncologists, neurosurgeons, etc.) who discuss the cases and decide on a treatment plan.  We were looking for a consensus on treatment for Lexi since all we had was differing opinions from our doctors here. 
    
    We actually had a good response with several neurosurgeons or oncologists calling personally to discuss the case.  Based on the expert advice we received, we are going to do a round of chemo, using the drug Etoposide.  That is 3 less than were recommended by one of our docs, though the Etoposide was one of them.
    
    The thinking is that the Etoposide might halt the growth of the tumor, drying it up a bit and pulling it away from the brainstem.  It will not make it go away.  Still, if it does pull away from the brainstem, it will make surgery an option.  Though none of the docs think they can get it all, they do think that there is a tiny chance that this might work and then follow it all with proton radiation therapy, which targets the tumor much more precisely than traditional radiation therapy.  It is a long shot, but the alternative is no shot at all.  Keep on praying!  Big hugs to you from both Lexi and me!

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       Dorsiposted 13 years agoin reply to this

       Sounds like a good plan Connie. And it is a shot at curing her. She has come this far and we are all continuing to pray for Lexi, you and your family!

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    Zsuzsy Beeposted 13 years ago

    Connie that sounds like a good plan of action. It's been such a long haul already for all of you, thank you very much for taking out of your time to keep us updated.
    
    This will be the plan that will get sweetems home and on the way to recovery.
    Wish I could do more than just send you my good thoughts and prayers but they're forthcoming every day... from our lips and hearts to His ears, may He guide the hands of all who are involved in the care of this precious little life.
    
    strength to you Connie, your family and of course love and hugs to Lexi

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    sofsposted 13 years ago

    I shall continue to pray for the two of you .. fight the good fight and trust in Him

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    Zsuzsy Beeposted 13 years ago

    Prayers from our lips to His ears. Thinking of you.
    Tons of gentle hugs to Lexi.

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    Connie Smithposted 13 years ago

    Since my last post, Lexi has been in and now back out Iof the hospital again.  She had another breathing problem last Sunday morning about 4 am.  Sadly, this time she came home on a ventilator.  It just keeps getting worse and worse....still, we have started the chemo drug Etoposide. Not sure if it can accomplish anything at this point, but we cannot quit fighting for her.

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       Dorsiposted 13 years agoin reply to this

       I'm sorry to hear about this setback, on the bright side you are giving her a fighting chance with this new drug, and lets's hope Lexi reacts favorably!! In our prayers Connie!!

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    Aficionadaposted 13 years ago

    Hugs and prayers for you all, Connie.  Lexi is always is our thoughts and prayers, as you are too.

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    Zsuzsy Beeposted 13 years ago

    Hope everything is going according to plan. Keeping you all in my thoughts and prayers always.

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    Connie Smithposted 13 years ago

    Eventually, you will all probably see a LOT of hubs about hospitals and my thoughts about them.  Though I write them in my head almost every day, I just don't get around to actually writing them for publication.  In a nutshell:  our healthcare system is very screwed up and I'm not just talking about insurance.
    
    I've watched what I call Lexi's "window of opportunity" get smaller and smaller.  A little over three weeks ago, at the first of the three recent hospitalizations, I was frantic with the gut feeling that, if she didn't have surgery, all hope was gone.  I still feel that way, but it was against the advice that the doctors were giving us. 
    
    My problem with that was that, long ago, I figured out that all of it was nothing more than educated guesses.  The brain is the last frontier, folks, and since we can't just open it up at a whim like some of the rest of the body, they really DO NOT KNOW FOR SURE what is going on in there.  MRIs look like old black and white negatives, with suspicious areas probably being tumors and injured areas being a varying shade of gray... 
    
    We started the chemo, Etoposide, as two different doctors who aren't making money on any outcome -- one from Stanford and one from Children's in Chicago -- advised us to do, followed by surgery.  However, the window is just about closed and we, again, had to make a decison about whether to continue treatment (starting the treatment) or just letting her go.  We decided to start the treatment, but also to get surgery, if at all still possible, right away.  The treatment alone will take some time and we are not sure that we have that kind of time left.  We are hoping to find out tomorrow if the surgeon is still willing to operate.  Our reasoning is that we would rather Lexi die with us fighting for her life than to give up on her and just let her fade away.  Hoping that is the next step and I will let you know when we hear something.

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    Jen's Solitudeposted 13 years ago

    Connie is Lexi still at home or did they start the chemo and readmit her? Sorry if I missed the answer to this question.

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       Connie Smithposted 13 years agoin reply to this

       We are giving it to her at home.  In the beginning, we were going to go with four drugs, but after we consulted the other doctors, we had two from the top 10 hospitals in the country who both said just the one, Etoposide, so that is what we went with.  My daughter laughed about the reaction from Lexi's neuro-oncologist when she was told that we decided on just the one.  She asked what other instructions we had for her, lol.  Both of the other doctors, independent of each other, said that there is no indication that all four together will be any more effective and the other three are much more harmful.   
       
       The Etoposide is an oral medication that we received already prepared in syringes and can be given at home.  It is supposed to be mixed with juice.  We administer through her G-tube using her feeding pump over a 3 hour period to help her tolerate it better.  We do have to take extra precautions if she throws up, etc., and with the empty syringes, which can't be just thrown in the garbage.  She will still have 3 weeks on and one week off.

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    Zsuzsy Beeposted 13 years ago

    What hard decisions you keep facing each and every day... I can't even imagine how you're all holding together.
    You're all in my prayers and thoughts.
    Strength to you Connie, your family and of course love and hugs to Lexi.

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       Connie Smithposted 13 years agoin reply to this

       For the most part, I manage by maintaining a sense of humor, Zsuzy.  Of course, so much is just too tragic for it, but even in the worst of situations, there are little nuances that can be humorous.  For my whole life, I have maintained that one can either laugh or cry. I'm not much of a cryer, but will admit that I have shed my fair share this year. Also, on a daily basis, except for certain times -- like when getting bad news -- we hold out hope that as long as Lexi is still here, there is a chance for her.  Without that, I could never get up and face the day.

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          kmackey32posted 13 years agoin reply to this

          I know what you are going through and its so hard....

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    Lisa HWposted 13 years ago

    Connie, still watching for updates on how Lexi's doing.  Still hoping for her.  Still wishing I could think up something to say that might help some (but I know better than that). BUT, as you say, she's still here, still has all that love and hope coming in her direction, and seems to be getting the best medical care available.  For now, I guess those things, and the hope that still remains, are what there is to hold onto.  Well, those and the tremendous love, strength, and good sense that have gotten you through so far.  For what it's worth (which isn't anything, I know), I think your reasoning on fighting for her life makes perfect sense for a lot of reasons.  Continued strength to you and your daughter, Connie.  Continued prayers for Lexi.

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    Zsuzsy Beeposted 13 years ago

    Hope things are running on a more even keel. You're in my thoughts with on-going prayers.
    take care

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    Connie Smithposted 13 years ago

    Thanks, girls.  It has been a pretty crazy week in spite of having insurance approval for "24 hour nursing" for one week.  That is because the agency just couldn't staff it and we ended up being short 90 hours.  The approved hours are now expired, but we are trying to get an extension for those 90 hours we missed out on. 
    
    We love taking care of Lexi and want our time with her, but there is a lot to it.  The agency director and an RN was at my house today and they got a good laugh when I said this:  "You know what the difference is between me and a licensed nurse? A lot of them aren't trained to handle these complex cases like I am!"  Seriously, I am more highly trained than some nurses.  Lexi has a G-J tube for feeding, a trach, has a brain tumor and history of stroke, getting chemotherapy administered at home and just got on the vent.  Lexi's case is as complex as they get. 
    
    We found an acupuncturist to come to our house since it is so hard to take Lexi out now, a Chinese guy who is the real thing....Lexi was very alert today, I thought.  I really think it helps her.  Earlier, she was trying to talk to me so she was doing good. 
    
    Lexi went out today to a doc, her first time out with the vent.  I didn't go, but it took 3 people to get her there.  Obviously, I will get my turn.  Here is a picture of Lexi on her day out.
    

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    SomewayOuttaHereposted 13 years ago

    Peace to you and your family....and especially Lexi...

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       Connie Smithposted 13 years agoin reply to this

       Thank you. I've had a long time to come to terms with Lexi's illness, but she is just a little girl who can't tell us what she thinks.  I am sure that she is so scared inside, but just can't let us know it.  Wishing her peace means a lot to me.

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    Zsuzsy Beeposted 13 years ago

    Connie, Lexi looks really good considering all that's been going on. Thanks for sharing the picture and the goings-on. Please give Lexi an extra hug.
    You're in my thoughts with on-going prayers.

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       Connie Smithposted 13 years agoin reply to this

       Thanks, Zsuzy.  If it wasn't for all the tubes and wires, Lexi would look great.  We moved her to a new "organic" formula called Pediasmart a few months ago and it just was really amazing.  We saw a difference in her (digestively speaking) in just 48 hours after being on Boost Kid's Essential for 1 1/2 years.  I only wish she was as healthy as she looks in that picture.

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    Zsuzsy Beeposted 13 years ago

    In my continued thoughts and prayers.

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    Zsuzsy Beeposted 13 years ago

    Thinking of you all. Prayers from our lips to His ears.
    Tons of gentle hugs to Lexi.

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    Dorsiposted 13 years ago

    Hi Connie. Stopping in say hello and give you a cyber hug.

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    almasiposted 13 years ago

    I prayed asking for healing for Lexi and the peace which surpasses all understanding for her family.

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    A Troubled Manposted 13 years ago

    Connie, I can't even begin to fathom the work you do for your grand-daughter, but I have to say you're doing a wonderful job and I hope and wish Lexi and your family all the best!

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    cindi hposted 13 years ago

    Continued prayers and everlasting hope!!

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    Connie Smithposted 13 years ago

    Thanks all.  Lexi seems to be more alert the past few days.  She is definitely more "vocal" on her don't wants...as in moving her foot all around so we do not put the oxygen sensor on her toe there.  I do not know if it is the chemo, which she has now had one full cycle of (3 weeks on, one week off) or her new acupuncturist, who, I believe, is much more experienced than the last one and is also Oriental.  At any rate, I pray that the improvements, however slight, continue.  She is having an MRI on Monday to see where the tumor is at.  We do not expect any real results yet from the chemo, but hoping, hoping.

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    leahleflerposted 13 years ago

    Sending my thoughts and prayers to you and to Lexi. I hope the MRI shows good news - it is hard to see a little one go through so much. Wishing you strength and peace through this!

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    Lisa HWposted 13 years ago

    Keep hoping.  You've got so many people hoping, and praying, along with you, Connie.  Still keeping an eye for your updates.  Still thinking of Lexi, you, your daughter.  What a long, awful, haul to even imagine anyone having to watch a child go through.  It does seem like, even with the seriousness of the whole situation, Lexi does still seem to keep having those seemingly small but encouraging signs.  Again, hoping (and hoping) along with you.

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    Zsuzsy Beeposted 13 years ago

    Thank you Connie for the up-date. Lexi's such an amazing little   fighter. I guess she gets it from her Granma and her Momma.
    In my thoughts and prayers always.

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    Zsuzsy Beeposted 13 years ago

    Stopped in to say hello. Always in my thoughts and prayers.

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    Connie Smithposted 13 years ago

    Thanks, Zsuszy, today is Lexi's MRI to see how the first round of chemo has gone.  Tomorrow is the appointment to see the results and for Lexi to get her weekly blood work done.  Wish us luck!  We will post as soon as we get something.

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       Zsuzsy Beeposted 13 years agoin reply to this

       Oh Connie, with all my heart I wish for the best news.  Strength to you all and loads of gentle hugs to Lexi.
       Prayers from our hearts to HIS ears

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    jean2011posted 13 years ago

    I will be praying that God will work a miracle in your life.

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    Zsuzsy Beeposted 13 years ago

    Thinking of you all and hoping things are going well for Lexi.
    As always my prayers are ongoing.

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    Connie Smithposted 13 years ago

    Lexi's MRI was inconclusive on whether the chemo is working.  That is due to them not doing one before the chemo began, so there was no real guide to go by.  The tumor has grown, but not at the rate as before and we do not know if it quit growing so much before or after the start of the chemo. 
    
    Lexi ended up in the hospital for two days right after my last post.  She had a very high temperature that was hitting 105F.  Of course, after she was admitted, she never had another fever...Her white blood cells are a bit low, but to be expected from the first round of chemo.  They decided to hold off on the chemo until after she gets more blood drawn on Monday.  Poor baby, her hair is falling out like mad.  That is with using only ONE of the four chemo drugs they wanted to put her on.  Still, she has been very alert and one of the nurses today saw her moving her mouth to say "Na Na," and even mentioned it before I did.  Most people do not believe that she is capable of saying it, lol, so every witness is a good one.  The video that I posted here...her speech therapist called it "gibberish" which, I admit, ticked me off.  That is a Nonnie's perogative.

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       Dorsiposted 13 years agoin reply to this

       Thanks Connie for the update on Lexi and I think you are right, she WAS saying NA NA. I remember when my dad was real sick and the Dr.s didn't believe he was communicating with me. I knew different though! And Lexi knows too!

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    Zsuzsy Beeposted 13 years ago

    Thank you Connie, for taking time out of your so busy schedule to up-date us. My Ganma used to say that a high quick fever was the body healing itself. As far as Lexi saying "NaNa" is concerned... Sweetums knows her Granma is there for her. The supposed "gibberish" is just a little baby who has been sick for such a long time... that should be expected, she just has to sort out her thoughts and then it will all come out right.
    Good thoughts and continued prayers coming your way.
    Tons of hugs to Lexi.

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    Zsuzsy Beeposted 13 years ago

    I was thinking of you all and hope things are going well for Lexi.
    As always my prayers are ongoing.
    tons of hugs for squirt

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