• I really need your help

    Asked by BigE54 on Thursday, January 22, 2015

    I really need your help

    This isn't really about cancer, although there is a possibility that it could be. What I need is something I know this site is good at, which is prayers, positive thoughts, and any other methods of sending strength and healing that you all can muster. My 10 month old grandson has been in the hospital for a few days now. They have diagnosed Nephrotic Syndrome, which indicates a problem with his kidneys. They will be preforming a kidney biopsy sometime today to hopefully get a definitive diagnosis as to what is causing this. While cancer is less likely a cause that other possibilities, it is still on the list. There are potential results that could be easier to treat, as well as others I'd prefer not to think about. Please, if you can send out whatever type of positive waves that suits you, I would be most appreciative. Thank you all so much.

    96 Answers from the Community

    96 answers
    • LiveWithCancer's Avatar
      LiveWithCancer (Best Answer!)

      Oh, bigE54, you got my prayers! I am so sorry to hear about your grandbaby's health goes. If you don't mind, i will post this on my Facebook and request prayers from my friends there too.

      over 4 years ago
    • BigE54's Avatar
      BigE54

      @LiveWithCancer yes, that would be great, the more prayers and positive vibes the better. Thanks so much!

      over 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Done!

      over 4 years ago
    • Carool's Avatar
      Carool

      BigE54, thank you for asking, though I'm so sorry about your grandson and your family. I'm sending healing thoughts to your grandson and your family. I hope he has the best possible diagnosis. Hugs, Carool

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      If you give me your grandson's name or initials I will place his name with out prayer group. Many people will be praying for him.

      over 4 years ago
    • Asanayogini's Avatar
      Asanayogini

      Sending prayers your way so sorry for your pain and your grandson as well, think positive it makes a difference

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      Hope it's just a false alarm Ed.
      But I will certainly say a prayer tonight for him.
      Hang in there...every day is an adventure and some not so good.

      over 4 years ago
    • BigE54's Avatar
      BigE54

      Thanks so much all! @BoiseB his initials are CGL
      And Barry....I'm not Ed, I'm Elliot :)

      over 4 years ago
    • kashubian's Avatar
      kashubian

      You're in my thoughts and you got the prayers. It's hard to feel helpless and to not know when it's kids involved. Hugs & positive thoughts.

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      Ok Elliot....

      over 4 years ago
    • BigE54's Avatar
      BigE54

      He just had the biopsy performed. They expect the results in about 3 days, so now it's holding breath time.

      over 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      Sending (((Hugs))), prayers, and strong healing vibes.

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      I just placed your grandson on our prayer board. We are praying for comfort in the loneliness cancer brings.

      over 4 years ago
    • Clyde's Avatar
      Clyde

      My thoughts are with you.

      over 4 years ago
    • gonewest's Avatar
      gonewest

      Meditations at sunset and prayers for your beloved grandson.

      over 4 years ago
    • Jalemans' Avatar
      Jalemans

      Prayers being sent. Please let us know.

      over 4 years ago
    • Phoenix76's Avatar
      Phoenix76

      I'm sending prayers and healing thoughts to your grandson, and to everyone involved in his care. ((hugs))

      over 4 years ago
    • po18guy's Avatar
      po18guy

      Prayers ascending!

      over 4 years ago
    • Stylerman's Avatar
      Stylerman

      Ed,

      Most of us on this site spend a lot of time in prayer. You're grand son will definitely be added to mine. I will keep you're family in my thoughts and prayers. Good luck.

      over 4 years ago
    • azsuper's Avatar
      azsuper

      May god help your grandson and you

      over 4 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Good thoughts winging to your grandson and the whole familly. Hope they discover it's something easily corrected and he gets back to being a healthy bouncing baby very soon. Hugs to you as well!

      over 4 years ago
    • SandiA's Avatar
      SandiA

      Sending prayers!!

      over 4 years ago
    • meyati's Avatar
      meyati

      you have it with my tears. May god give you strength and healing.

      over 4 years ago
    • BigE54's Avatar
      BigE54

      An update about my grandson: This morning they were able to remove his breathing tube. He is being tube fed with breast milk and tolerating it. He urinated for the first time in 24 hours, and he is awake and alert. He is improving each day.

      I'm sure our thoughts and prayers are helping him along, thank you all so much!! Still waiting for the biopsy results which won't be back until probably Monday

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      Prayers for you, your grandbaby and the whole family. God is with you. May you find hope in that.

      over 4 years ago
    • po18guy's Avatar
      po18guy

      More prayers ascending.

      over 4 years ago
    • Judt1940's Avatar
      Judt1940

      Praying for your Grandson and all of you waiting.

      over 4 years ago
    • chrismorr's Avatar
      chrismorr

      May God send his angels to surround your baby boy with love and grace. Things sound like they're going in the right direction, babies are remarkably strong with those wonderfully young cells, ready to heal. God bless all of you !

      over 4 years ago
    • ritafaystageIV's Avatar
      ritafaystageIV

      Prayers for healing, comfort, and strength.

      over 4 years ago
    • Carool's Avatar
      Carool

      BigE54, how is your grandson? Best, Carool

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      Yes, BigE54, keep us posted. Prayers are continuing.

      over 4 years ago
    • BigE54's Avatar
      BigE54

      One of the more difficult things for me in dealing with my grandson's issues is that we are separated by distance. My son and his family are in North Carolina and I am in Florida. My wife and I are going up there in February but for now I get any updates through my daughter in law and she had not posted anything for a couple of days. I am grateful whenever she can find the time to let us know how my grandson is doing. She has even been posting pictures so we can see him.

      As of earlier today, he is stable, although he is still having problems urinating and holding down food. Also, the biopsy results are still not back.

      I am so grateful to all of you for your thoughts and prayers. I truly believe that positive energy can have a real effect on events, so thank you so much for your ongoing efforts on my grandson's behalf.

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      Ed, if you are in the Durham area and I can do anything like tell you where places are or run errands, call me. My number is in the book. They won't publish it here.

      over 4 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Sure hope no news is good news on that biopsy. Will continue to send good thoughts to you and your family.

      over 4 years ago
    • BigE54's Avatar
      BigE54

      I have additional news about my grandson and it is not very good. His heart stopped last night and he has been intubated again. (He's alive and stable right now.) Preliminary biopsy results came back... he has nephrotic syndrome with diffuse mesangial sclerosis. This will be a long term chronic condition that will definitely have him needing a kidney transplant. That is all I know at the moment. My own preliminary research regarding diffuse mesangial sclerosis is not good, but as we know too well here, statistics on the internet can be misleading. Also I don't know what time frame a kidney transplant would occur in. Right now actually, I am kind of numb with this news. I don't think I quite felt this way even through my own cancer. Please keep the thoughts and prayers coming, as he needs everything he can get

      over 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      Am keeping you all in my thoughts and prayers. (((Hugs)))

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      Prayers continuing.

      over 4 years ago
    • Carool's Avatar
      Carool

      His well being is in my thoughts. Best -

      over 4 years ago
    • IronMom45's Avatar
      IronMom45

      Hello Elliot,I just seen this, prayers for all of you.

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      He will continue to be in my prayers.

      over 4 years ago
    • gonewest's Avatar
      gonewest

      Yes. Meditations and prayers for your grandson and your family.

      over 4 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Oh, BigE, I'm sorry about the diagnosis. Will keep you, your grandson & the entire family in my thoughts. Big hugs!

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      Any news yet?

      over 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Still praying for your sweet grandson, BigE! I hate that you all are going through this ... especially that he is having these health issues.

      over 4 years ago
    • BigE54's Avatar
      BigE54

      According to his mom's latest update, my grandson's heart stopped again last night, and they are now concentrating on figuring out why that is happening. A great big thanks to all of you for your continued support, it means a lot to me

      over 4 years ago
    • po18guy's Avatar
      po18guy

      Keeping the prayers going.

      over 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Poor baby. Praying hard. I post your updates on my FB to keep those prayers coming too!

      over 4 years ago
    • timetoshare's Avatar
      timetoshare

      I pray for you both.

      over 4 years ago
    • BigE54's Avatar
      BigE54

      I know I haven't posted an update for a while and I apologize. My grandson is still in the hospital but has been relatively stable the last few days. They have been trying a different type of dialysis for a few days to see how he reacts but other than that nothing has changed. The only really good news is that the weekend after next my wife and I will be taking a road trip to see my grandson and also my granddaughter, not to mention their parents, of course. I cannot wait to see the little guy, even though I know it will be in a hospital. In the meantime, I want to continue to let all of you know how much I appreciate your continued prayers and positive thoughts. Thank you all!

      By the way, my grandson is hospitalized in Charlotte, North Carolina, so if anyone is from there or knows that area, please message me. A little extra knowledge of the area couldn't hurt.

      over 4 years ago
    • jackiwalkr's Avatar
      jackiwalkr

      Sending Hugs and Prayers your way!!!!

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      Prayers continuing.

      over 4 years ago
    • Carool's Avatar
      Carool

      Hugs and good thoughts going your way.

      over 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      Prayers and healing vibes continue.

      over 4 years ago
    • gonewest's Avatar
      gonewest

      All meditations, prayers for your grandson and your family.

      over 4 years ago
    • meyati's Avatar
      meyati

      Have a safe trip. Maybe things will be better by then. Prayers and hopes.

      over 4 years ago
    • po18guy's Avatar
      po18guy

      Additional prayers.

      over 4 years ago
    • keahemalie's Avatar
      keahemalie

      Blessings and healing to your grandson and family... <3

      over 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Best of luck on your roadtrip! I am so happy you are able to go visit your grandkids and kids. I hope you find your little grandson much improved when you arrive.

      over 4 years ago
    • Judt1940's Avatar
      Judt1940

      I know this is a very anxious trip for you and your wife. You must remember to get rest while you are there. You getting over stressed will not help anyone. Love to you and family.

      over 4 years ago
    • Roadrunner's Avatar
      Roadrunner

      My positive thoughts and prayers go out to you and your family and especially the little guy. Prior to cancer I was dx with stage III kidney disease. Contact the North Carolina Kidney Association. They can provide LOTS of great information. They can connect you with the transplant coordinator for that state and you can get him on the list right away. As I type this I have tears falling down my face.......it doesn't seem right that children and terrible diseases should go together......Could you provide his first name so I can ad him personally in my prayers. Take care and keep us informed.

      over 4 years ago
    • BigE54's Avatar
      BigE54

      Thanks so much for the support all of you have given and are giving to me, my family, and of course my grandson. My trip to see him went as well as I could have hoped. We visited him in ICU 3 different times and spent as much time as we could in the hospital. It was great seeing my son and his wife after so many months. The doctors were in the process of weaning my grandson off the sedatives he had been on, so even though he was a bit groggy, he had his eyes open and was looking at me as I touched his little hand. My wife and I also spent some time with my granddaughter which was wonderful.

      Since we came back, they have moved my grandson out of ICU into progressive care, which is great. Of course, one of the first things he did when fully out of sedation was pull one of his catheters out so he had to be brought down for additional surgery to put another one in. They are also trying to acclimate him to being fed with a tube and at the moment he isn't cooperating much. I have also found some additional details about what he will be facing. For one, the syndrome he has is also associated with mental retardation, so they will need to watch for that. As far as a kidney transplant is concerned, he will need to meet both weight and age requirements, and while I am not sure about the weight, he will need to be at least 2 years old before they will do it. And, to complicate matters, they are still waiting for some pathology results that could indicate that his syndrome could be leading to cancer, and if those results come back, they might have to pull both his kidneys as soon as possible, which means he would need to live totally by dialysis until he is eligible for the transplant, which is over a year away. So, while his doctors and his parents are happy with the progress he has made, this is going to be a long hard struggle. One good piece of news is that they think if he stays stable and adjusts to his feeding tube, they will be able to allow him to go home and only visit the hospital one a week, which would be great for my son and his wife not to have to divide themselves with their children.

      Needless to say, words cannot express my gratitude to all of you for your thoughts and prayers. I am certain that positive energy can affect real results, and I am totally in all your debt.

      over 4 years ago
    • BigE54's Avatar
      BigE54

      Oh yes, @Roadrunner, his name is Corbin

      over 4 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Thanks for the update. Sounds like he's a little fighter. Hope that fighting spirit will lead him to a long healthy life.

      over 4 years ago
    • po18guy's Avatar
      po18guy

      Love is proved, not in good times, but in the difficult, challenging and heartbreaking times. Of faith, hope and love, the greatest (think of that for a moment) is love. And so our brotherly love of this tiny soul impels us to send prayers skyward. Amen.

      over 4 years ago
    • meyati's Avatar
      meyati

      My heart breaks for all of you. This is so sad. I can't say anything that means anything. Stay strong BigE. Try to get through this battle one day at a time. I'm glad that you got to spend time with your granddaughter. It's really hard to be a small healthy child, and have a sibling having such torment. They get sort of left out.

      over 4 years ago
    • greytmomm's Avatar
      greytmomm

      Keep your faith. He's a fighter! God's got it! Stay strong!

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      Sounds like he made a big step coming out of ICU. My prayers continue for both Corbin and his family.

      over 4 years ago
    • Carool's Avatar
      Carool

      BigE, for me, Meyati said it all. Thank you for letting us know how Corbin is doing. Sending more good wishes to you all.

      over 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      (((Hugs))) to you all.

      over 4 years ago
    • gonewest's Avatar
      gonewest

      Love, hugs, and all good things coming your way.

      over 4 years ago
    • keahemalie's Avatar
      keahemalie

      My hope for Corbin is that he can go home, to his own room. May this family continue to grow stronger and face each day with strength and grace. Sending this prayer on a soft, gentle breeze... <3

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      I will offer prayers for Corbin at church tomorrow

      over 4 years ago
    • BigE54's Avatar
      BigE54

      First, a quick update: Corbin was allowed the other day to take a tour of the hospital in a specially equipped stroller of sorts. Needless to say, everyone they met on this tour had their heart melted by my grandson. :)

      Now, a little present for all of you who have helped so much by having my grandson in your thoughts and prayers. I set up a photo album so you could see who you have been helping all this time. Feel free to download any of them, all I ask, is that per my son's wishes, nothing gets posted on public social media. If you want to post a picture in your church, temple, or other "real world" places, that is fine, but not on twitter, facebook, or the like.
      The album contains one picture that includes my adorable granddaughter as well. One small warning, most of the pictures of Corbin are of him in the hospital connected to a bunch of tubes and iv's so if you have a problem with pictures like that, please take care. Also, the site where the album is is setup to allow pictures to be sold, but you can disregard that, I'm not looking for any money. Downloading the original picture is free, and if you need any help with that, or anything else with these pictures, just ask :) There is also one video of one of the rare times Corbin was fed aurally.

      The link to the album is:
      http://public.fotki.com/bige54/corbin/

      Password: grandson (case sensitive)

      Thank you all again for your continued thoughts and prayers.

      over 4 years ago
    • gonewest's Avatar
      gonewest

      He's so adorable. Thanks for this.

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      He is precious!

      over 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      Wonderful news about the stroller tour. What a beautiful boy.

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      Thank you so much for the pictures. They brought tears to my eyes. He is so adorable

      over 4 years ago
    • po18guy's Avatar
      po18guy

      Prayers continuing.

      over 4 years ago
    • meyati's Avatar
      meyati

      He's a darling. About his future--doctors can be so wrong about that. I just want to pick him up and kiss him!!

      over 4 years ago
    • keahemalie's Avatar
      keahemalie

      Oh, he's adorable (and looks very much like his big sister)! It's great the nurses rigged up his "stroller" so he could go look around. I so hope his oral feedings will increase; looks like Corbin would like that, too, by the way he went after that syringe! But as a baby nurse, I know things have to happen in their own time. I'm honored that you've chosen to share such a personal and heartfelt family journey here with us. Again, blessings of love and light to you and your dear ones. <3

      over 4 years ago
    • Carool's Avatar
      Carool

      Thank you for letting us see photos of your beautiful grandchildren! I love Corbin's spiky hair, and those cheeks! I, too, am an older sister to my brother, and I know how close that relationship can be. I hope that Corbin is soon back home in the loving arms of his family. Hugs!

      over 4 years ago
    • Roadrunner's Avatar
      Roadrunner

      Thank you so much for the adorable pictures. He is so cute and what a cute granddaughter you have also. I watched the video and he sure likes to eat :) It was awesome that you shared and now when I say his name in my prayers I have a mental picture to go along with it.

      over 4 years ago
    • BigE54's Avatar
      BigE54

      Hi everybody,

      i owe all of you wonderful people a long overdue update. I will try not to get too detailed. I do want to say that overall Corbin is doing as well as one could hope.

      1) They did remove one kidney. i don't have many details about how functional his remaining kidney is, or the status of whether any dialysis he may still be having.

      2) They have him stable enough that they allowed his parents to take him home. Hw is still hooked up to a lot of tubes and monitors though, and the pictures I have seen of his crib at hime looks just like his hospital crib.

      3) Unfortunately his stay at home was quite short. He developed a 103.5 fever and they had to return quite quickly to the hospital. They will have to treat any infections that might be causing the fever before they can consider letting him go home again, although it is still a major victory that he was able to go home even for a short time.

      ,I can't express enough gratitude to all of you who have kept my grandson close to your heart as I know that you have all helped him do as well as he has.

      Thank you all.

      (PS: I will try to post some updated pictures into the album for anyone interested and will let you know when I do)

      Thanks again.

      about 4 years ago
    • Schlegel's Avatar
      Schlegel

      Sounds like he is slowly improving. I will keep Corbin and all of you in my prayers. Thanks for the update. I was wondering how he was.

      about 4 years ago
    • BoiseB's Avatar
      BoiseB

      He is still on my prayer list. Thank you for the update.

      about 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      (((Hugs))) and healing vibes from here. Very glad he had a chance to be home, even if only for a short while.

      about 4 years ago
    • Carool's Avatar
      Carool

      I'm sending Corbin and all of you my best wishes for his quick return home and his getting well. Big hug all around. I look forward to seeing your pics.

      about 4 years ago
    • po18guy's Avatar
      po18guy

      Prayers ascending.

      about 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Thanks for the update!! So glad Corbin is improving and pray that the doctors will soon discover the cause of the fever. Prayers for you all. What a difficult journey this has been.

      about 4 years ago
    • emerald's Avatar
      emerald

      Does anyone know how Corbin is doing?

      over 3 years ago
    • BigE54's Avatar
      BigE54

      For all those keeping Corbin in their thoughts and prayers, a big thank you. While his long term prognosis has not really changed, he is actually doing fairly well at the moment. He even has regained some abilities he had lost, like waving and clapping. If anyone is interested, i posted a picture here of Corbin, his sister Autumn, and their buddy the Easter Bunny. It should be in the site's Media Posts. Thanks again to all of you.

      over 3 years ago
    • BigE54's Avatar
      BigE54

      The picture is in the Pinboard

      over 3 years ago
    • chrismorr's Avatar
      chrismorr

      May God send his most precious angels to guard your baby boy. He is so young, hopefully he will be able to heal !

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Thanks for the update, BigE! Prayers continue for Corbin.

      over 3 years ago
    • Schlegel's Avatar
      Schlegel

      Cute picture. Prayers continue.

      over 3 years ago
    • Abi's Avatar
      Abi

      Wow! What a fighter Corbin is
      Thoughts and prayers for him

      about 3 years ago

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