Connie Smith who has been a member here on Hubpages for quite a time now just sent me this email
..... She has been doing so well, starting to walk, talk more plainly, but not yet able to eat and still on a feeding tube. Still, we have been pleased with her progress and working on the feeding.
I am so, so, devastated to tell you that Lexi's tumor has returned twofold and that the doctors give her an "almost zero" chance of survival. We are not giving up and plan to get a local second opinion as well as at St. Jude's, if possible, which we are working on. We are also praying for a miracle and really are so hopeful that God could not be so cruel as t o let her recover so much just to take her back down and out. Please help me pass the word along. I am having trouble with it, though my goal, as it was before, is to have people the world over praying for a miracle for Lexi. ....
Lexi and Connie need our support, our prayers and good thoughts. Please.
I've placed the relevant Hub and the new Prayer Request on my Facebook Wall and will post it in the prayer groups there I know about, along with some others locally. It only takes 2 to agree in prayer, but how much more can a thousand do? - I pray they respond and agree with Connie and all here in prayer for a healing miracle, in Jesus' Name.
One of my students was healed of a tumor after prayer and I stand on that miracle and ask it again for Lexi.
Tumor be gone and send no other in your place. Comfort come in.
I will report on the responses!. Special blessings to Zsuzsy Bee for alerting us.
Sharry Fast was the first FB'er to respond with a prayer.
responses are beginning - let it crank!
There is no mistake I landed in the forums. I rarely frequent the forums. My Spirit aches for Lexi and her family. In the name of Jesus I ask you Father creator of all who gives life and takes life to heal little lexi, so she may be a testimony to the God of Miracles that lives today. Father you are the same yesterday today and tomorrow. The family does not want lexi to pass on Father. I know I am a mother and grandmother I can not imagine the pain they feel. I pray you would shelter the family under your wings and give them your peace. Please wrap them up in your big arms father and comfort this family. Lord we do not know why some things happen as they do. This is an older post. I am led to pray and it was no mistake i landed here. None at all. If Lexi lives please father make her complete and whole from the top of her little head to the souls of her precious little feet from the inside to the outside of her little body. Lord if you call little lexi home she will never endure hardship or pain again. She is too good for this world. You take some early to spare the heartaches in this world. Living in eternity and the Light is like nothing our finite minds can imagine. If one does not know there is a heaven and hell may they be led to the truth. Jesus is the way to heaven to God the father. Lexi I am praying for you and for your family.. In the Name of Jesus Christ. I am in agreement for total healing. In His name. Love skye2day
I stand in agreement on a healing miracle for Lexi in the name of Jesus. Thank you Patty for reporting the responses.
We have a dozen prayers, two sets of good thoughts, and two of the larger prayer groups praying. Will check in later.
@Patty Inglish, Ms, testimony does reproduce it's kind when shared. Good you did. 'They overcame him by the bIood and by the words of their testimony.' I join in faith, believing that our compassion and prayers have brought healing to her body in Jesus' Name. Let us also thank God for her quick recovery.
I am so sorry to hear about Lexi. I will be praying for her and her family.
How sad. St. Jude's is the best place for a full recovery. My heart goes out to Connie. She has to stay focused, strong and know that everyone here on hubs is praying for Lexi....
I sent off a card on Saturday. I am praying Lexi will pull through this.
My prayers and good thoughts go out to both Lexi and Connie and hoping everything is fine now.
This is unbelievably sad! It's so difficult in times like this to understand God's will, but He will take care of her! I will pray that she remains on this earth to thrive as an adult and human being. Bless Lexi and her entire family and all of her little friends! And lets also pray for the doctors and nurses to find the right answers and to nurture her completely while she's ill.
Such a beautiful little girl, I'm so sorry to hear what this family is going through.
very sad to hear. thanks for letting us know.
I found this old thread for those who may not know about her, including a link to the hub about little Lexi.
Here is the link to Lexi's story
My prayers and best wishes for the best outcome for Lexi and strength for her family. It is such a helpless feeling when a loved one is so ill.
...oh my....yes....i'm sending out my support for Lexi, her Mom & Dad, her dear Connie and the rest that love her so much......
Fight the good fight guys and may something really great come out of the effort.. be well Connie.
Hiya Pearldiver, thank you for the encouragement
Yes, she is fighting the good fight. And we are all praying for all of you and for Lexi to have a miracle. God bless you all.
I've just read this thread (I missed the last one completely), and I just want to say how sorry I am so hear that little Lexi (who is an absolutely beautiful and adorable little girl) is so ill. My prayers and thoughts go out to her family, and I'll keep praying for a miracle.
This is the latest news from Connie
...We got better news today than on Friday. While her tumor is inoperable, the radiation doctor thinks she can give Lexi a small chance, which is much better than a zero one. We will take what we can get for now. She will have strictly radiation for a period of time to be determined. Due to her age, she will have to be sedated for every visit. Only after the radiation is finished, then chemo, if all goes well during the first part. While the doc was hesitant to give me numbers, she did speak of Lexi in future terms and we do want that. One thing we do not want is a totally brain damaged Lexi and she assures us that won't happen. However, there are some concerns. The tumor is close to the pituitary gland and also close to some cranial nerves that serve functions for vision, hearing, etc. She already has some cranial nerve damage from before, but the doc thinks that some of that might go away.
I will keep in touch and I appreciate anything you can do for Lexi to get people praying for her and sending positive thoughts toward the heavens.
These pictures are from her baptism on Saturday.
Oh, facebook, that's a great idea. I posted Lexi's picture on my wall and requested prayers and good thoughts be sent to her. I hope it's okay with you Zsuzsy Bee.
Thanks, Z for letting us know. Lexi and her family are in my thoughts and prayers. Keep us posted, please.
Oh Zsuzsy Bee,
I'm so sorry to hear about this setback in Little Lexi's life. She is such a beautiful little girl -- and so loved!
I will ask my husband to issue a prayer request for Lexi in his prayer group.
Adding mine to the determined chorus:
Please look upon your daughter, Lexi, newly baptized in Christ's name,and have mercy upon her suffering and the suffering of all of those who love her.
Please remove this tumor and protect her from illness and injury
Please gently guide Lexi through her radiation and chemo treatments so that she may emerge whole and healed
May her vibrant spirit form a blessed, beaming shield around her life, today,tomorrow, and for many happy years to come.
In Jesus' name we pray.
Thank you, dear Lord.
Hugs to you and to Connie, also. MM
You can count on me and my prayer group to be praying for Connie and Lexi... I come into agreement with other believers for their healing. God Bess!
Thank you all, let the good thoughts and prayers keep on coming
Lexi has had a small miracle in that her case has already been reviewed at St. Jude's. St. Jude's is the #1 hospital in the US for childhood brain tumors and ependemomyas, which is the type Lexi has. They are awaiting more info from Lexi's doctors. In the meantime, Lexi had a spinal tap this morning to check for cancer cells in the spinal fluid. They do not think there are any there, but they have to make sure. It is over, but Lexi is not home yet nor do we have the results. I thank you all who are praying for Lexi, sending best wishes and who have taken her into your hearts. She does need a miracle.
Know that a lot of people are praying for Lexi and you and your family,we know that God answers prayers and believe He will give you the miracle you asked for.I love you Connie and wish I could personally be there with you.He has began the miracles,St.Jude is just the beginning!!
Hi Connie, You are very welcome! Good to hear from you. Look foward to the updates on Lexi progress.
Connie, great to hear from you. How is Lexis spirit? Can she play, color etc? It must be such a challenge to keep little ones occupied when they're confined to a hospital room.
My thoughts are with you all.
Strength to you my dear.
Lexi is at home, except for these procedures, like the spinal tap today. She falls down a lot, as she is not too steady on her feet, but she is walking again (still recovering from the first brain surgery last March). Funny you should mention coloring....she had gotten tired of coloring from having to sit in her high chair so much for feeding with the pump. Now, we do it differently so she has more mobility. She hasn't colored for quite a while, but tonite, she colored and really, for a newly 3 year old, she was trying hard to color in the lines. Of course, she couldn't, but you could see the attempt.
Here she is a few weeks ago, riding a bike. She has come so far! Last May, she couldn't sit up or hold an object, after her last surgery. We want her to have a chance at life! Please continue to pray. Your prays mean so much to us all.
Thank you for posting updates and pictures of Lexi.
You have a ton of support here on HP and your hubber friends are rippling out prayer requests to others in our lives.
God bless and keep safe your beautiful granddaughter.
Connie, thanks for the update. Squirt looks great on her trike. Here is to better days, really soon.
Mighty Mom so glad for your visit. Thank you for the prayer requests.
I am so grateful to Zsuzsy for posting this and keep the word going for us. We do believe in the power of prayer and that God can give us the miracle we seek. I appreciate all of you who are rooting for Lexi, praying for her and putting her on your prayer lists at church. Like Zsuzsy, I believe that the more prayers, the louder our voice. Lexi is as sweet as she looks and she has already gone through so much. She just turned 3 on December 5. She is so young to show such courage and determination, but she does. Of course, she doesn't understand that things are not going well. She continues to improve from her last surgery and we continue to work with her, though soon, she will be very sick, first from radiation and then, after, chemo will follow. So far, that is the plan.
We do not have a date yet. On Friday, we got a second opinion from a neuro-oncologist at All Children's Hospital in St. Petersburg. Her plan would be for Lexi to have radiation in Jacksonville because they have a different type of radiation that doesn't cause as much "scatter." What I take that to mean is that the radiation does not hit the areas around the tumor as much as the normal radiation does. This is important because the tumor is close to the pituitary gland. Still, she helped my daughter by submitting the rest of the paperwork that St. Jude's needed to make a decision on Lexi's case. After we hear from St. Jude's, we will decide what to do. I hope that is this week. The docs have said we have about 2 to 3 weeks to decide what to do.
Connie, Lexi is a fighter. May God continue to intervene with the power of prayer.
Very smart getting a second opinion. It is so great your family is thinking so clearly even at such a stressful time. Keeping options open can really make a difference. You guys keep up the good work and stay positive.
All we have is hope. Right now, Lexi continues to improve from her original surgery, talking better every day, dancing a bit, singing a little, being grumpy to the dog....it is hard to imagine that, once again, she has a tumor growing in her head. Last time, she didn't exhibit any real symptoms until right before it was discovered and it was mostly vomiting. Since she seems so well, it is a bit easier to have a positive attitude right now. Still, we are doing everything in our power, from second -- and third opinion, from St. Jude's, we hope -- to her recent baptism in an Episcopal church to asking you all to pray for her and more. We are doing everything physically and spiritually that we can think of. This does help us as does any doctor and there have been at least two, who speak of Lexi and a long term future in the same sentence.
From how quickly we were able to get Lexi baptized to how quickly the pipeline opened up to St. Jude's, we feel God's hand at work and are comforted by it. Please keep up the prayers. I believe in them and I believe that they are working.
Thinking about Connie and Lexi and the rest of the family, so just giving this a bump up. Waiting to hear is so difficult, can't imagine what the family is going through.
Hi all, we are still awaiting opinions from the experts, but St. Jude has extended an invitation for Lexi to go there (which will probably happen) for surgery and radiation. Lexi will have a new MRI on Monday, as several doctors have said the last one could be better. The original surgeons from last time said in the beginning that the tumor was inoperable and would kill her to operate. However, tumor boards at both St. Jude and All Children's in St. Petersburg have said that it is operable and that successful operations have been done in that area of the brain. We are not sure if they know all the problems Lexi had with the last surgery and her now compromised respiratory system (she still struggles with that...pneumonia often, etc.). After her MRI, we are going back to the original surgeons to get a better idea of why they felt uncomfortable, make sure that the others know about her past problems and then, probably go to St. Jude, if it is still a go. We do NOT want Lexi to end up with brain damage and do not want the surgery if she is not going to have a somewhat normal future. I used to manage a facility for mental health resident, some of which had brain trauma. I do NOT want Lexi to end up like that. That is going to make decisions difficult, because we do NOT want to lose her, but also want what is right for her. We do feel that God is looking down on us and hearing our prayers. Please keep them going.
...oh my Connie...thanks for the update...you are all faced with such hard decisions...life is so surreal for you all...in the moment...wishing you all well...
Connie, thanks for the update. Keeping my fingers crossed for good news.
Major prayers coming your way...
Giant sized bear hugs and best thoughts for you all
and here! (So, so, hoping this latest crisis irons out for Lexi, her family, and - of course - Connie).
Thank you everyone. The prayers and good thoughts are appreciated.
Not a great deal new to report, but we did go to the original team of neurosurgeons to see why they did not think Lexi's tumor was operable. Partially, it is due to the complications from the last surgery, which includes the fact that her respiratory system has never recovered. Lexi gets pneumonia easily and has been hospitalized several times since her original surgery last March for it and a low oxygen level. She still gets breathing treatments,etc. A new operation will cause Lexi several more complications that they do not think she needs. They feel so strongly about it that one of the surgeons emailed his concerns to the team at St. Jude.
We are going there to meet with the neurosurgeons next Tuesday to listen to their plan and to make sure that they know what Lexi's complications were and what her current situation is. After that, we will make a decision. We are pretty sure that we will either go with St. Jude or the original radiation plan and no surgery -- what the original surgeons think is best. All Children's in St. Petersburg, Florida wants to do 2 rounds of chemo (6 weeks each of heavy hitting drugs) then do brain surgery, followed by radiation. They admitted that she will have some side effects, which could include facial paralysis in the right side of the face (she already has some in the left), vision problems and hearing problems. We are not too keen on all that. Obviously, we are still gathering information, but it is looking more and more like we need that miracle that only God can give us. Please keep your prayers going and when we hear from St. Jude next week, I will let you all know what is happening.
On a good note (but bittersweet), we took Lexi to Disney World today. It was her first time going and she had a good time, though she couldn't enjoy it as well as the other 3 year olds there. She still has trouble walking and a vision problem due to the cranial nerve damage from her last surgery, making it hard for her to focus. One eye goes in the wrong direction, which you may have noticed from the photos.
Connie, she looks so sweet and happy. I know it must be so hard, and yet when I look at her photos, she always looks happy, which I'm sure she is. Her life is what she knows, and it's apparent that she is loved very much. Happiness knows no limitations.
Thank you for keeping us informed and know that you all are in my heart, and Lexi's name is on a piece of paper on my desk. xo
Thanks for the update Connie. How great that you were able to take Lexi to Disney world. She looks so sweet. My thoughts and prayers are with you.
My granddaughters are adding their voices to our prayers every night.
Giant sized bearhugs for the little munchkin.
She's adorable - and looks as happy as any other little kid at Disney World would. It seems to me she's already a miracle in so many ways.
Bumping this thread up to get some more prayers being sent in Lexi's direction.
Please please pray for Lexi! She has had a brain hemorrage and a possible seizure. Right now she is getting an emergency shunt put in to drain the fluid from her brain. This is NOT good.
Connie, I am praying for the brain hemorrage to completely stop and for the tumors to disappear, and never return in Jesus name.
OH NO! How is she doing now, Connie? Did the stunt stop the brain hemorrhage?
Lexi had another MRI this morning. No results yet, and she is still in a coma. She is showing a very, very slight response to pain stimulus. We should get the results shortly. She did not have a shunt, they just put a external tube in to drain all the fluid from her brain and there was a lot. She is on a ventilator, but breathing a lot on her own, which is very good. I will keep you all updated when I hear more. In the meantime, you all are helping to give me strength to get through. I thank you. You all saw her the other day at Disney. Here she is today.
This is heartbreaking my friend! Sometimes comas serve a useful purpose though, giving the body and brain a chance to heal. Let's keep that in mind and hope that she begins responding more to pain stimulus. She is a fighter, that she has already proven. With the fluid gone, and if the swelling goes down, they will be good signs, right?
I know how torturing this is for you, but you and your darling Lexi both share that fighting attitude. Cling to it now. I sure am depending on it yet one more time!
Love you Connie, sending a big virtual hug your way.
The neurosurgeons were just in. We know without them telling us that Lexi is in critical condition, but they consider her condition worse than after she had the orginal surgery and all those complications, including brain swelling. All they can tell us is that we have to take one day at a time and that, if Lexi is in a condition to do handle it, that they will operate on Monday. Now that the tumor has hemorrhaged, it is too dangerous to leave in. There is too big a possibility that it will bleed again. Please tell your friends and ask them to tell their friends....Lexi needs a miracle.
Conne, I am glad she is breathing a lot on her own. I have already submitted a prayer request for Lexi to my church, and to my friends. Stay strong and believe with the the Lord, Lexi will recover fully with no more brain swelling and tumors.
We are all praying for a miracle! You are in our prayers beautiful Lexi. Stay strong.
Connie you seem to know my questions before I ask them. I was wondering what caused the hemorrhage, I now understand it was the tumor itself. I totally understand why they would now want to get it out of her as soon as possible. I know this weekend will seem to drag on forever, but will be worth all the agony if she is in good enough condition to have the tumor removed.
Like your doctors said, we will just have to take it one day at a time, minute-by-minute.
Thanks so much for keeping us posted. I have been thinking about all of you all day long, hoping at this point things just stay the same if they don't improve. This is going to be a long weekend for sure.
Oh no, how heart breaking. Connie strength and courage to you and your family. My thoughts and prayers are on-going. Tough days are in front of you all but little Lexi is a fighter as her track records prove.
Good Morning Connie! At least I hope it is going as good as can be expected. Anxiously awaiting an update as soon as you have the time.
Hope today went well. Like Jen I'm anxiously awaiting the good news.
Thank you for asking. Lexi's temperature is back to near normal. However, she still has a lot of covering on. She is hot-blooded and usually doesn't want anything on but her diaper. She will kick a blanket off -- except she didn't even try to kick the blankets off this time. She is doing better, but she is not doing as well as she was even a couple days ago. Hoping that it is just a blip, but we had to raise her oxygen up to 2 liters today from a half liter. Periodically, we have to do something similar but it is a bit higher than we would normally do. Just needing a night or two more with her. That is all I ask.
I received an email about this discussion in my inbox from hubpage email notification and after going through some of the discussion above, I am really shocked and burst into tears. I would like to pray to My Allah the almighty in these words which are actually the words of Muhammad (peace be upon him).
""O Lord of the people, remove this pain and cure it, You are the one who cures and there is no one besides You who can cure, grant such a cure that no illness remains".
May Allah the almighty bless Lexi with complete recovery and long happy life. Ameen.
So very kind of you. I have often said that Lexi is not a non-denominational baby girl, but an ALL-denominational baby girl. I appreciate your heartfelt prayers and concern for our baby girl. Lexi has taught me so much about people. We have all come together here because of her and we are all people of many faiths. I find peace and contentment in that.
You are a kind person and your prayers are moving. I join my prayers with them for Lexi.
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