My Granddaughter has a brain tumor

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   Connie Smithposted 14 years ago

   Please pray for Lexi who is undergoing brain surgery right this minute.  I am not self-promoting, but I did write a little hub about her with pics if anyone wants to see it.  Believe me, the last thing I care about is a better hubpages score right now!  Lexi is 2 years old and we just found this out two days ago.  She has been so good and has only cried for donuts, because she hasn't been able to eat anything for the last two days due to tests and the surgery.
   
   I believe in the power of prayer.  If you do too, please pray for her.

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      west40posted 14 years agoin reply to this

      I will say many prayers - Please keep us posted - I have a 2 year old granddaughter and can't even imagine what you and her parents are going through.

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      JL Butlerposted 14 years agoin reply to this

      Lord we thank you that no weapon formed against little Lexi shall prosper, and by your stripes we claim her healing. Lord you made her just a little lower than the angels, but to those you gifted her to she is their little angel. So raise her from her sick bed that she may live and grow strong to declare your goodness. Strengthen her entire family through it all. It is in Jesus name I pray.
      At the tender age of two my baby boy was attacked with seizures, EKG reports determined it was epilepsy said he'd be on medication the rest of his life, BUT NOT SO. After I prayed and countless others joined me when he went in for the MRI the doctor could find no sign of the spots that were on his brain just one day before. As of yesterday he is now 17yr old and has been seizure and medication free. So yes prayer works.
      The world loves you LITTLE LEXI.

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         Connie Smithposted 14 years agoin reply to this

         Thank you so much for your prayer.  It touched my heart and so so glad that God heard your prayers with your own son

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            JL Butlerposted 14 years agoin reply to this

            Know you are so very welcome and thank you, these are the ties that make us all family. how is baby Lexi, I have since forwarded her on to my prayer partners. Stay encouraged and remember it sometimes looks worse before we see the better.

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      starme77posted 14 years agoin reply to this

      I totally believe, and my heart and prayers are with you

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      ripplemakerposted 14 years agoin reply to this

      Yes, will pray for her.  Loving hugs sent her way and family.

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      brianzenposted 14 years agoin reply to this

      Find many prayer lists online and petition, I too will add my prayers.

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      Harvey Stelmanposted 14 years agoin reply to this

      Connie,
      
      If you are near Chicago, write me. I know a world renounded neurologist in the brain tumor field.

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         Connie Smithposted 14 years agoin reply to this

         Thanks, Harvey.  Lexi is in St. Joseph's Hospital in Tampa, Florida.  She has already had her surgery.  We did check out her doctor, Dr. Arthur Marlin, and were pleased with his credentials.  I believe that he did an incredible job and even though the tumor had grown INTO the brain stem, an MRI has shown that 100% of the tumor was removed.  Of course, she will have to have chemo for insurance purposes in case of microscopic cancer cells, but she is too young for radiation. 
         
         Still, I appreciate you taking an interest.  I am simply amazed by the kindness of virtual strangers.  There are so many good people in the world.  It is too bad that we too often focus on the bad ones.  Thanks, Harvey, you are one of the good ones!

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         h.a.borcichposted 14 years agoin reply to this

         So glad to hear the good news on Lexi - keeping her in prayers, and you too Connie !
         
         Harvey,
           My nephew is being treated for a brain tumor that has metastisized to his spine. He gets chemo at childrens, radiation at northwestern. Mayo did the surgery with a ped. neurosurgeon from St Judes. Could you tell me who this dr is ? He is in the hospital now as the tumors in his spine have made him unable to walk or use his arms, and it is advancing rapidly. He is 5.
         Thank you, Holly

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            ThoughtfulSpotposted 14 years agoin reply to this

            Prayers for you and that little guy as well! I'm so sorry to hear of your situation.  My oldest son is 5.  I can't begin to fathom what your family is going through.  All of us should count our blessings, and the least we can do is say a prayer for those who need it.  I hope that you find the answers that you are looking for and that headway is made soon in your nephew's case.

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      paxwillposted 14 years agoin reply to this

      Prayers for little Lexi and her family!  Pull through girl!

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   cindyvineposted 14 years ago

   am holding thumbs, Connie!

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   donotfearposted 14 years ago

   You got it from me....miracles still happen. I believe.

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   LaViejaposted 14 years ago

   I believe in miracles too, and if any one deserves one its her. I will pray for her and keep everything crossed that she comes through ok. Children are very resilient so lets keep faith. Please let us know how it goes. Thinking of you.

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   Connie Smithposted 14 years ago

   Thank you all!  As of right now (2:57 p.m EST), Lexi is still in surgery and has at least an hour to go.  The surgical team called out to the information desk that she was "doing well."

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   rebekahELLEposted 14 years ago

   {{hugs}} thinking of lexi.

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   Connie Smithposted 14 years ago

   Thank you all for your prayers and well wishes (your holding  thumbs as well, Cindy!).  Lexi is out of surgery, but the next 48 hours are quite critical.  We still need your prayers!  The tumor "appeared to be very malignant," according to the neurosurgeon.  Lexi, if all goes well, will be facing chemotherapy, but she is too young for radiation, according to the doctor.  Part of the tumor was "in her brain stem" and we are not sure what that will mean for her as far as future disabilities goes.  She has not woken up from the surgery and the doctor will access her when she does.  Please continue to pray that she will not have any "deficits" as the doctor called them.

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      h.a.borcichposted 14 years agoin reply to this

      Of course I will continue to pray.
      My 5 yr old nephew is also dealing will a high grade malignant brain tumor that grew to the size of a lemon just above his brainstem and was considered inoperable. Mayo did radiation and oral chemo for 6 weeks and it shrank to the size of a walnut and shifted a little making surgery possible. So they removed 90% of the tumor a month ago. Now he is doing 21 radiation treatments and weekly chemo as it spread into the brain stem and spine. It is also a tough situation and my heart goes out to you and your family.
      Have you been to St Judes or Childrens hospitals? I am amazed what they can do. If you would like me to forward information I will gladly do so. And I most certainly will keep praying.
      God Bless, Holly

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         Connie Smithposted 14 years agoin reply to this

         My granddaughter is at St. Joseph's Children's Hospital in Tampa.  The pediatric neurosurgeon is one of the best, according to research on the internet.  I am so sorry to hear about your own nephew.  Seeing Lexi's aunt's devastation over this (my other daughter's) and my own sister's (Great-Aunt Tia), I have an idea of just howdevastating your nephew's illness has been for you also.  Your generosity in sharing information has warmed my heart  today.

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            h.a.borcichposted 14 years agoin reply to this

            So glad your granddaughter is in a great facility. The skill of the surgeon is a big factor for surviving. I am amazed at how these kids are so resilient and many overcome the obstacles and odds stacked against them. Thank you for the prayers for our Danny, too. He is a fighter and doing his best.
            Does Lexi have a CaringBridge page for updates? And let me know if I can help in any way at all.
            God Bless and may her recovery be full and swift.  Holly

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               Connie Smithposted 14 years agoin reply to this

               I've never heard of the CaringBridge page for updates.  Please fill me in on this.  I posted in two forums, wrote a hub, posted it on my blog when it was mentioned there and Facebook.  I came to Hubpages to post because we have a lot of people praying in the US, but I wanted people from all over the world to pray for her.   My grandchildren mean everything to me, as you can see....

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                  h.a.borcichposted 14 years agoin reply to this

                  Hi Connie,
                    CaringBridge is a free website for people who are facing major health issues. You can upload photos, have a journal, recieve messages, etc. I found it most helpful when I was doing surgeries and chemo - I only posted once rather than having 20 calls a day asking me to constantly repeat how it was going.
                  http://www.caringbridge.org/
                  I hope that helps explain it Keeping you in my prayers, Holly

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   WriteAngledposted 14 years ago

   My heart goes out to your little one. I am not Christian, but have mentioned Lexi to my Gods.

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   frogdroppingposted 14 years ago

   Events such as this makes me realise how lucky I am. I sincerely hope your grandaughter regains her full health. And the same to your nephew h.a.borcich.

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      livewithrichardposted 14 years agoin reply to this

      Same here. It puts a perspective on how much we take for granted. I'll continue praying for Lexi and your nephew h.a.borcich.

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    TheGlassSpiderposted 14 years ago

    {{{BIG HUGS}}} The Lord is with you. May he guide you and yours, protect you, strengthen you, and surround you with His light at this most difficult time.
    
    You and your family are in my thoughts. Love one another well.

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    Padrinoposted 14 years ago

    I can't imagine how you feel,You, your child and your family are in my prayers.

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    Ohmaposted 14 years ago

    So young to have to go through so much! May you and your family find peace and comfort in your friends and each other during this awful time. {{{{{{{{HUGS}}}}}}}}

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    saltposted 14 years ago

    Love and healing, they do very good work these days. I wish you and your family and grandchild love and healing.

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    Zsuzsy Beeposted 14 years ago

    Oh how awful, all the strength to you and family. My prayers are with you all.

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    emievilposted 14 years ago

    My prayers go out to you and your family, especially to your granddaughter.

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    Connie Smithposted 14 years ago

    Thank you all so much.  I believe in the power of prayer....and the value of having hubpages to get my message out.  You have not let me down and I am grateful.  I want people the world over praying for Lexi and sending out positive thoughts.  Where else but Hubpages do I have the power to do that?  Thank you all and thank you Hubpages!

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    Connie Smithposted 14 years ago

    Lexi is having a few worrisome problems, as well as a few encouraging signs. She has been largely unresponsive to even a penlight in her eyes, but she has been under strong medication. In the middle of the night, she had a response when they turned out the lights outside her room. She also once seemed to recognize her mother and lifted her hand a bit toward her. She also has moved her arms and legs, indicating that she is not paralyzed.  She also scratched her forehead.  Her oxygen level went down and they discovered that her throat is swollen (she is now on oxygen and the level is back up -- I pray that she does not have to be intubated again) and then, later, unfortunately, the area around the brain stem (where her tumor was located) has also swelled. The doctor says now it is a matter of days instead of hours in terms of learning what kind of "deficits" may have happened due to the tumor removal.

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       Faybe Bayposted 14 years agoin reply to this

       Thank you for the update, still keeping her in prayer.

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       h.a.borcichposted 14 years agoin reply to this

       Keep the faith. I know it is scary yet hese things happened with Danny too. The steroids will help with the swelling, but their little bodies are reacting to the surgery. When Danny came around, the nausea and vomitting began and continued for 2 or 3 weeks. It is darkest before the dawn. All our prayers, God Bless, Holly

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    rebekahELLEposted 14 years ago

    
    a flower for Lexi, full of life.   
    
    thinking of your little darling with love. it is encouraging to hear her responses. {{hugs for you and your family}}

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    Crazdwriterposted 14 years ago

    My prayers and positive thoughts for little Lexi.

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    Poppa Bluesposted 14 years ago

    I hope everything has turned out all right for your little angel! I will keep her and you in my thoughts and prayers!

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    Connie Smithposted 14 years ago

    Thank you all so much.  It is very uplifting to read your comments and know that so many people care about one little girl, out of so many who are so ill, that they have never even met.  There are no changes to report from the last update, except that her oxygen level has improved to the point that she has gone from 15 liters to one, according to the nurse.  The doctor was just in and ordered a feeding tube that will go down her nose. 
    
    Unfortunately, that is going to be tough for Lexi's mother, Kara, who has been very strong up to now, even though in total shock from taking her daughter into ER for an upset stomach and coming out with a brain tumor. She is now having a bit of a meltdown and could use the strength of your prayers as well. I am remaining strong for everyone, which is the type of person I am, knowing that I have to remain strong so that others around me can draw some strength from me and lean on me as well.

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    Zsuzsy Beeposted 14 years ago

    I don't think there can be anything harder to take then seeing your little ones all pale against the hospital sheets, so the melt down is understandable. Strength to your and you Connie. Prayers for a speedy recovery for the little one. Thank you for the update.
    kindest regards Zsuzsy

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    Uninvited Writerposted 14 years ago

    I don't know if it is of any comfort to you but a good friend of mine's little boy had a brain tumor when he was around 1. Now he is a perfectly healthy, and very intelligent, 25 year old.
    
    I'm sending good thoughts her way.

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       Connie Smithposted 14 years agoin reply to this

       Yes, it is a great comfort to me.  Thanks for posting it.

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    H.C Porterposted 14 years ago

    You and your family are in my thoughts and in my prayers. I hope that she is doing well and you are able to hold her tight and feed her donuts very soon.

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       Connie Smithposted 14 years agoin reply to this

       I would love to shower her in donuts!  After hearing about Lexi crying for donuts on the way into the operating room, everyone at my sister's job site wants to feed her donuts.

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    TheGlassSpiderposted 14 years ago

    Thank you for the update. I'm glad you're keeping us informed, and I'm happy to hear about each step forward she's making. I can't imagine what it must be like for you and your family right now, but you all remain in my thoughts and prayers. Stay strong.

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    Sunshiney31posted 14 years ago

    My families prayers are with your little girl and the entire family...Prayer is powerful and my son has come through many obstacles and God has brought him back to us each time...love and Sunshine..I believe this for her as well

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    QuirkyPearlposted 14 years ago

    Love and Rainbows on their way...

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    Connie Smithposted 14 years ago

    I am so,so grateful to you all.  As I can't use my phone in Lexi's room, these posts are like a lifeline to me while I am with her, as I am again tonite.  She is sleeping quietly right now, but we did have a setback with Lexi having to be intubated due to her oxygen level going down to 70, a very dangerous number.  Though she got very agitated as the ventilator went in, she has been resting for several hours now.  They suspect that she had a small seizure.
    
    People on the ventilator have a natural desire to pull the tube out, so they have to have their arms tied down.  I actually pulled my own tube out last fall when I was in the hospital myself.  While they were waiting for the restraints, I was able to be beside her (normally they prefer that we stay away from the bedside to keep the stimulation down for her).  I was walking on the clouds as she actually seemed to focus on one of my rings and she actually grabbed it and pulled on it! She kept her hand on it for a very long time.  Again, that shows some coordination. 
    
    It is so difficult to wait patiently to see if there is any damage.  After the worry of just surviving the initial 48 hours, of course the brain functions that she might have lost is uppermost in our minds and hearts.

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       starme77posted 14 years agoin reply to this

       Wow, it sounds like she is doing o.k now , try not to focus on the after effects so much , but just the here and now, One Day At A Time Sweet Jesus by Chrisy Lane is a Favorite song of mine ,  I'll keep praying for you ,

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          Connie Smithposted 14 years agoin reply to this

          That is what the doctor keeps telling us.  That song is also a favorite of mine.  I will keep it in my mind when I want to jump ahead so far.  Thank you.

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       Faybe Bayposted 14 years agoin reply to this

       Not only coordination, but recognition! That is a wonderful sign! I am sorry for her discomfort and know it is a long wait for you and your family, but be encouraged by these signs, She is responding to visual stimulation with coordinated gestures, motions and eye hand coordination. After what she has been through some people wouldn't be able to reach for anything.

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    Lisa HWposted 14 years ago

    Connie, sincerest good wishes and prayers for your little granddaughter.  It must be an unspeakably frightening thing for you and her parents to have to go through.  Here's hoping for a great outcome.

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    prettydarkhorseposted 14 years ago

    and my prayers go with you! HUGS, more HUGS!

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    ThoughtfulSpotposted 14 years ago

    I've said a little prayer for little Lexi and all of you who are watching her with such love in your hearts.
    
    Thoughts with you and yours for a better day each tomorrow.

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    Jen's Solitudeposted 14 years ago

    Connie you are showing that inner strength that I have come to know and love!
    
    I am much relieved that she is responding and doing the little things that can provide solid evidence that her little body is fighting and healing.
    
    I hope your daughter is as strong as her mother, as I know that is what is needed to get through these very stressful times. As the moments pass tortuously slowly onward, allow yourselves to continue to feel encouraged and hopeful.
    
    Lexi is amazing in too many ways to list here, between her strong will, her family's loving support and the great medical attention she is receiving, there is every reason to feel positive about her eventual outcome.

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    Connie Smithposted 14 years ago

    Thanks, Dar, for that compliment.  Kara has done very well under the circumstances, but as I told her, I have a lot of life experience that has helped to make me strong. Fortunately, Lexi's breathing problem was due to collapsed lungs and not as a result of the surgery at the brain stem.  The brain stem is the central control for the brain and does command such basic functions as breathing and swallowing.  Still, we are extremely hopeful.  This morning, Lexi actually pointed at a stuffed animal at the end of her bed.  I knew that she was pointing because she has always pointed with her middle finger.  I was walking on air!  The doctor said later that it showed "purpose," a great sign for Lexi's recovery, I think.  She has already shown coordination through the fluid movement when she scratched her head and Lexi's mama was thrilled when Lexi reached for her to be held (showing recognition) though it was heartbreaking as she cannot yet be picked up.  Her brain also does not show any real additional swelling today from yesterday, even though the dr. said swelling peaks at three days. 
    
    Again, I am so grateful to you all.  You give me comfort when I read your replies.  Please keep praying for Lexi.  She has a long journey ahead to complete recovery.
    
    Please keep up the prayers.  She has a long way to go.

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    Jen's Solitudeposted 14 years ago

    Wonderful to come and read your reply Connie. What is that saying: "slow and steady wins the race."  Seems like Lexi is on a slow but steady pace of improvement.  I will be so happy to hear that Kara and you can finally exhale. The time is certainly closer now than ever before, but please keep posting these updates just to keep us informed.
    
    Big Hugs to you all!

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    Cari Jeanposted 14 years ago

    I will keepher in my prayers and that Lexi would be healed in the name of Jesus.

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    Lecieposted 14 years ago

    the strength of so many good prayers and thoughts are behind you and your Lexi right now. with such strength comes a brighter day. smiles and sunshine coming to you my dear. chin up:)

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    dogluver1posted 14 years ago

    I'm so sorry. I'll keep your grandaughter in my prayers.

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    Faybe Bayposted 14 years ago

    I am glad to hear of the improvements! Keeping her in prayer as well as the family.

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    Jen's Solitudeposted 14 years ago

    Connie's daughter Ashley just posted to Connie's hub that she (Connie) has now been hospitalized as well! She is in the same hospital that Lexi her granddaughter is in. Hopefully she will rest up and be released soon. So much for one family to be undergoing right now! Just wanted to let everyone know.

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       Lisa HWposted 14 years agoin reply to this

       What a thing.  It's all unimaginable.  Hopefully, as you say, she'll rest up.  So many people who don't even know Connie, Lexi, and their family are rooting for them.

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    TheGlassSpiderposted 14 years ago

    I'm so glad to hear about Lexi's progress--She's obviously a fighter!
    
    I will continue to pray for you and your family. Stay strong!

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    Connie Smithposted 14 years ago

    I am fine, though hospitalized.  I have a large hematoma in my abdomen area.  It is left over from my previous hospital stay in Ohio from Feb 21 to the 29th.  It is due to having to take Coumadin after finding out I have an allegery to Heparin (a blood thinner made from pigs in China) that is widely used in hospitals across the US.  The allergy messed up my blood platelets which culminated with me having to be on Coumadin for at least a year and having a blood clot anyway in my leg....
    
    Lexi is probably going to be getting her ventilator removed today.  They are weaning her from that and her medication to see if she can breathe on her own before taking it out.  We are ever hopeful that she is going to be fine in the end.  I appreciate all of you who have responded.  From the beginning, my goal has been to get as many people praying for this child as I could.  Thank you all so much.

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    ThoughtfulSpotposted 14 years ago

    Connie, glad to hear that you are o.k. and that Lexi continues to show signs of improvement.  Continued thoughts are with you, Lexi and the whole family.

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    Connie Smithposted 14 years ago

    We have great news this morning.  Lexi has her vent on the lowest level and is breathing mostly on her own.  In addition, the air she is breathing is room air and not oxygen!  She can breathe on her own!!!!  God is hearing our prayers!  Please keep them coming.  We are not out of the woods yet.

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    frogdroppingposted 14 years ago

    Very glad to hear this news Connie! Here's hoping the positives keep coming

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    rebekahELLEposted 14 years ago

    wonderful!!!  thanks for the update. 
    
    
    
    for Lexi and family.

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    Zsuzsy Beeposted 14 years ago

    So glad to hear the good news. You are in my thoughts and prayers.

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    Connie Smithposted 14 years ago

    Thanks all.  Lexi is still on the tube as of this evening.  She is continuing to breathe some on her own and no oxygen, but the doc said she didn't have a gag reflex.  He was hesitant to take out the tube because he didn't want to have to put it back in once it came out.  Good news is that she threw up twice this evening, showing that she DOES have a gag reflex.  Also, since she has been off the medicine for almost 3 days, we are hoping that she comes around.  My daughter did some research on Versed, the sedative that they used on her and found that a study was done and quite a few of the people, older than Lexi, had a hard time coming out of it.  Please keep up the prayers, she still needs them!

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    rebekahELLEposted 14 years ago

    thank you for letting us know connie.  hope you are able to get some rest. little lexi is in our hearts.

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    cosetteposted 14 years ago

    still keeping Lexi in my thoughts, and good wishes for her and you and your family.

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    _cheryl_posted 14 years ago

    Great to hear of Lexi's progress! And a scare to hear of your hospitalization. My prayers continue for you both and your family. Lexi is so blessed to have such a doting and loving Grandmother as you!

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       Home Girlposted 14 years agoin reply to this

       I believe in miracles...

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