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My mom’s new state: Update

Forums General Melanoma Community My mom’s new state: Update

  • Post
    Manubuzzi
    Participant

       

       

      Greetings Everyone,
       
      I hope that this message finds everyone well, or at least, on an upswing.  I am sincerely wishing you all well.  With respect to my mother, things haven't been going well.  Last week was great.  Before last week, we had had a difficult time, because she couldn't speak very well, she was confused, she couldn't remember much, and worst of all, she was aware of it.  Then, from one day to the next, she was great, and you could see it in her face that she felt so much better, and she just cried because it was a miracle.  
      She remembered everything, she spoke perfectly, she had good mobility, etc.  Sadly, it didn't last long.  Saturday 4/30, we had to admit her into the hospital because she began seizing.  She was stabilized pretty quickly, but she regressed back to her "pre-miracle" state.  Due to the anti-convulsion medicine, she is extremely tired these days.  The doctors performed the necessary tests.  There was no bleeding detected in the Tomography,  and the 3 cerebral tumors are still active.  The blood test showed a low count of red and white blood cells and platelets.  She is really really weak.  Starting the day after the seizures, she was really tired and fatigued with trouble speaking and a bit confused.  We thought that it was all because of the new medication she was taking and that she would get better.  But today, it has been exactly a week that she has been taking the new meds, and each day she's more tired than the day before, she doesn't get out of bed, she sleeps practically all day.  We are completely at a loss.  We don't know if this new symptom is a consequence of the brain tumors advancing, the seizures she had, the anti-seizure medicine, or the other tumor in her liver.  Please, I'd like to know if one of you have had similar situations or if you have any help or advice about her new state.  We are so worried and desperate.
       
      Thank you,
       
      Manu
      Son of patient
    Viewing 9 reply threads
    • Replies
        Carol Taylor
        Participant

          Dear Manu,

          You've presented a most gut-wrenching experience and shared a deeply personal part of your time with your Mom.  At your age you can't be expected to have seen this before or know what to make of it.

          You and your Mom were given a miracle and I want you to hold on to that in the time to come. OK?  Not everybody gets that.  But, enough do that it's well documented.

          Before I go on, let me stress that she's alive and where there is life there is hope. I'm a firm believer in hope and miracles and sometimes miracles come and they are all we hoped for!  And sometimes, what we hope and pray for doesn't come in the way we hoped and prayed.

          Manu, keep your Mom comfortable, hold her hand as much as you can. Talk to her positively and Manu, follow her lead. If she needs to sleep, let her. Make sure to have water or ice chips at all times and keep her mouth and throat hydrated. If she wakes up and feels like talking, let her. Listen and keep any responses positive. Don't let people talk negatively in her presence.  If she chooses to talk about death, again, follow her lead.  Whether or not she is actually dying, if she's exhibiting these symptoms, the possibility is going to be on her mind. Let her know you're safe to talk to. Please hear me, I'm not saying she is, I am saying it's normal to think about the possibility and need to talk about it.

          I want you to do something Manu, if Mom starts talking and or acting in more unexpected ways, come back here and lets talk about it. OK?  I hope that she comes through this and is resting as she fights.  Time will tell what's going on.

          Lord, in Your unending love and mercy, hold Manu, his Mom and the rest of his family close at this time. Guide them Good Shepherd and use Your rod and staff on their behalf. Amen.

          Carol Taylor
          Participant

            Dear Manu,

            You've presented a most gut-wrenching experience and shared a deeply personal part of your time with your Mom.  At your age you can't be expected to have seen this before or know what to make of it.

            You and your Mom were given a miracle and I want you to hold on to that in the time to come. OK?  Not everybody gets that.  But, enough do that it's well documented.

            Before I go on, let me stress that she's alive and where there is life there is hope. I'm a firm believer in hope and miracles and sometimes miracles come and they are all we hoped for!  And sometimes, what we hope and pray for doesn't come in the way we hoped and prayed.

            Manu, keep your Mom comfortable, hold her hand as much as you can. Talk to her positively and Manu, follow her lead. If she needs to sleep, let her. Make sure to have water or ice chips at all times and keep her mouth and throat hydrated. If she wakes up and feels like talking, let her. Listen and keep any responses positive. Don't let people talk negatively in her presence.  If she chooses to talk about death, again, follow her lead.  Whether or not she is actually dying, if she's exhibiting these symptoms, the possibility is going to be on her mind. Let her know you're safe to talk to. Please hear me, I'm not saying she is, I am saying it's normal to think about the possibility and need to talk about it.

            I want you to do something Manu, if Mom starts talking and or acting in more unexpected ways, come back here and lets talk about it. OK?  I hope that she comes through this and is resting as she fights.  Time will tell what's going on.

            Lord, in Your unending love and mercy, hold Manu, his Mom and the rest of his family close at this time. Guide them Good Shepherd and use Your rod and staff on their behalf. Amen.

              Manubuzzi
              Participant

                 

                Carol,
                 
                Your responses are always wonderful, I am really grateful that people like you exist.  From the bottom of my heart, thank you.  While I wrote this, I got a call from my father.  He said that they are putting my mother back in the hospital due to her current state.  She probably needs and will have a transfusion.  
                 
                Thank you for your words and prayers, they are very necessary,
                 
                Manu
                Carol Taylor
                Participant

                  Manu,

                  This is the first time you've mentioned your Father being present so I'm glad to learn you're not having to step up to the plate and be "the man" of the family for your Mom and siblings.

                  That being the case, can I add…be your parents' child at this time. Let your Dad be your Dad and let him be the one to carry this for your family. That's part of his "job" as Dad. Suuport him at this time, support your Mom, support your siblings, but you don't have to try and be a parent. 

                  You do need to be as present as possible and stay in the loop as we say in the States. Stay informed, ask questions, come here to this board, be supportive and do all you can to make your Mom comfortable and do everything you can to be there for your family.

                  Love your Dad, Manu, love him like he's never known you to love him before. Give him hugs and kisses like you've never done before. Hold his hand and give him your shoulder to cry on…offer it, don't wait. I'm sure he's tough and trying to hold his emotions together around you and if he is, please let him know you're a man who's grown enough to let him cry if he needs to and you'll be there for him.  No matter how strong your Dad has always been and is being now, he is in a fragile, thin place, in a way you've never been because you've not been where he is.

                  What I'm saying is, don't just concentrate on your Mom, be there for your Dad too…let him be Dad, but let him know you've got his back at this time. You need each other.

                  Grace and peace to you, Friend,

                  Carol

                  Carol Taylor
                  Participant

                    Manu,

                    This is the first time you've mentioned your Father being present so I'm glad to learn you're not having to step up to the plate and be "the man" of the family for your Mom and siblings.

                    That being the case, can I add…be your parents' child at this time. Let your Dad be your Dad and let him be the one to carry this for your family. That's part of his "job" as Dad. Suuport him at this time, support your Mom, support your siblings, but you don't have to try and be a parent. 

                    You do need to be as present as possible and stay in the loop as we say in the States. Stay informed, ask questions, come here to this board, be supportive and do all you can to make your Mom comfortable and do everything you can to be there for your family.

                    Love your Dad, Manu, love him like he's never known you to love him before. Give him hugs and kisses like you've never done before. Hold his hand and give him your shoulder to cry on…offer it, don't wait. I'm sure he's tough and trying to hold his emotions together around you and if he is, please let him know you're a man who's grown enough to let him cry if he needs to and you'll be there for him.  No matter how strong your Dad has always been and is being now, he is in a fragile, thin place, in a way you've never been because you've not been where he is.

                    What I'm saying is, don't just concentrate on your Mom, be there for your Dad too…let him be Dad, but let him know you've got his back at this time. You need each other.

                    Grace and peace to you, Friend,

                    Carol

                    Manubuzzi
                    Participant

                       

                      Carol,
                       
                      Your responses are always wonderful, I am really grateful that people like you exist.  From the bottom of my heart, thank you.  While I wrote this, I got a call from my father.  He said that they are putting my mother back in the hospital due to her current state.  She probably needs and will have a transfusion.  
                       
                      Thank you for your words and prayers, they are very necessary,
                       
                      Manu
                    washoegal
                    Participant

                      It could quite possibly be the anti-seizure meds making your mom tired.  My sister has had seizures all her life and whenever she goes on a new med it plays havoc with her body.  The only way she has learned to partially counter the effects is by lights exercise and since this is not an option for your mom you may just have to put up with it or ask to try a new med.  Some of the meds my sister has been on have left her chronically fatigued.  I'd opt for keeping your mom comfortable, whatever that takes.  If the sleeping all the time isn't bothering her, than please try not to let it bother you.

                      Mary

                      Stage 3

                      washoegal
                      Participant

                        It could quite possibly be the anti-seizure meds making your mom tired.  My sister has had seizures all her life and whenever she goes on a new med it plays havoc with her body.  The only way she has learned to partially counter the effects is by lights exercise and since this is not an option for your mom you may just have to put up with it or ask to try a new med.  Some of the meds my sister has been on have left her chronically fatigued.  I'd opt for keeping your mom comfortable, whatever that takes.  If the sleeping all the time isn't bothering her, than please try not to let it bother you.

                        Mary

                        Stage 3

                        FormerCaregiver
                        Participant

                          Thanks for telling us about your mother and the small miracle that she experienced. Sometimes
                          people who are very seriously ill will attempt to tell or show their loved ones about how they
                          are feeling spiritually. Therefore, this would be a good time to encourage your family and
                          friends to visit your mother, and to spend a bit of quiet time with her. Even if she can't
                          communicate verbally, I think that it is important for people to be with her as a way of assuring
                          her that whatever happens is in ok and that you have done all that you could.

                          Unfortunately, any tumour in the liver is a real cause for concern, especially if liver function
                          test results are very abnormal. Extreme fatigue and sleeping all day can be due to liver failure,
                          medications, brain damage due to seizures, and other reasons.

                          If your mother is someone who is a spiritual person and finds comfort in religion, then it would
                          be a good idea to ask her family, friends, and others to pray for her.

                          Hope this helps.

                          Frank from Australia

                          FormerCaregiver
                          Participant

                            Thanks for telling us about your mother and the small miracle that she experienced. Sometimes
                            people who are very seriously ill will attempt to tell or show their loved ones about how they
                            are feeling spiritually. Therefore, this would be a good time to encourage your family and
                            friends to visit your mother, and to spend a bit of quiet time with her. Even if she can't
                            communicate verbally, I think that it is important for people to be with her as a way of assuring
                            her that whatever happens is in ok and that you have done all that you could.

                            Unfortunately, any tumour in the liver is a real cause for concern, especially if liver function
                            test results are very abnormal. Extreme fatigue and sleeping all day can be due to liver failure,
                            medications, brain damage due to seizures, and other reasons.

                            If your mother is someone who is a spiritual person and finds comfort in religion, then it would
                            be a good idea to ask her family, friends, and others to pray for her.

                            Hope this helps.

                            Frank from Australia

                            Sandi Dalton
                            Participant

                              Manu, I am so sorry for this difficult time.

                              I was started on Keppra as an anticonvulsant after my brain tumor was removed in September. It left me very, very tired, a little confused, short term memory deficits and no appetite. I stopped the Keppra in attempt to improve overall state. It worked until 3 weeks ago when my seizures returned, so I'm back on it with the same side effects..

                              I'm told that this should improve over time. Depression may be another side effect.

                              What helps me most is my family. I don't know how much time I have left, so each moment is precious. Some of my family is able to talk about dying; others are not. I cherish each one of them; whatever each is able to share for that moment.

                              I have a strong faith, so death does not bring me fear. I trust God, and share that with my loved ones.

                              I pray that you know His grace and peace. There is nothing stronger.

                              Love to you and yours

                              Sandi

                                FormerCaregiver
                                Participant

                                  Thanks Sandi. I am impressed by your thoughts on this difficult topic. As you say, the support of
                                  family is very important when a crisis with far reaching consequences seems to be inevitable.

                                  I admire your courage in declaring your strong faith.

                                  Spirituality and religion are subjects that are seen as very unfashionable and are therefore
                                  neglected by many people in my part of the world. It is only when a loved one is faced with the
                                  possibility that life is finite that most people will start to wonder if they have missed
                                  something in ignoring the spiritual side of life.

                                  Wishing you peace and happiness.

                                  Frank from Australia

                                  Sandi Dalton
                                  Participant

                                    Thank you, Frank.

                                    I do have to admit to being scared at times: not of death, but what will lead to it. That's when I hear His voice that brings peace and the promise of what is to come.

                                    God bless

                                    Sandi

                                    Sandi Dalton
                                    Participant

                                      Thank you, Frank.

                                      I do have to admit to being scared at times: not of death, but what will lead to it. That's when I hear His voice that brings peace and the promise of what is to come.

                                      God bless

                                      Sandi

                                      FormerCaregiver
                                      Participant

                                        Thanks Sandi. I am impressed by your thoughts on this difficult topic. As you say, the support of
                                        family is very important when a crisis with far reaching consequences seems to be inevitable.

                                        I admire your courage in declaring your strong faith.

                                        Spirituality and religion are subjects that are seen as very unfashionable and are therefore
                                        neglected by many people in my part of the world. It is only when a loved one is faced with the
                                        possibility that life is finite that most people will start to wonder if they have missed
                                        something in ignoring the spiritual side of life.

                                        Wishing you peace and happiness.

                                        Frank from Australia

                                      Sandi Dalton
                                      Participant

                                        Manu, I am so sorry for this difficult time.

                                        I was started on Keppra as an anticonvulsant after my brain tumor was removed in September. It left me very, very tired, a little confused, short term memory deficits and no appetite. I stopped the Keppra in attempt to improve overall state. It worked until 3 weeks ago when my seizures returned, so I'm back on it with the same side effects..

                                        I'm told that this should improve over time. Depression may be another side effect.

                                        What helps me most is my family. I don't know how much time I have left, so each moment is precious. Some of my family is able to talk about dying; others are not. I cherish each one of them; whatever each is able to share for that moment.

                                        I have a strong faith, so death does not bring me fear. I trust God, and share that with my loved ones.

                                        I pray that you know His grace and peace. There is nothing stronger.

                                        Love to you and yours

                                        Sandi

                                        Carol Taylor
                                        Participant

                                          Manu,

                                          How's your Mom now? What's the latest?

                                          Keeping you and yours in prayer!
                                          Lord, in Your mercy. Amen.

                                          Grace and much peace,

                                          Carol

                                          Carol Taylor
                                          Participant

                                            Manu,

                                            How's your Mom now? What's the latest?

                                            Keeping you and yours in prayer!
                                            Lord, in Your mercy. Amen.

                                            Grace and much peace,

                                            Carol

                                              Manubuzzi
                                              Participant

                                                Hello again to all,



                                                First, Thank you all for all your responses.  We have passed the recent storm, and I feel I should tell everyone how my mom is doing.  She has been checked into the hospital due to weak blood, a urinary tract infection, and another more complicated infection in the wound where she had the brain surgery on 2/23.  It made her get worse in general, with fever and muscle pain.  After a few days in intensive care, with blood transfusions and a few procedures to drain the infection from her head, and a visit from a pretty famous Priest here that came to bless her, my mom is doing better!  It is amazing how well she has recuperated her speech and general alertness and understanding.  Also, it seems that she has more energy now and a renewed strength.  And the rest of us do too!  Like my mother said to the Priest, "it's not going to be so easy for God to take me to that other world."  Next week, we start another session of Temodar.  And, if it's God's will, we will be able to stop the growth of the brain tumors, and we'll start with IPI.  Carol, Thank you, from the bottom of my heart, for your kind words.



                                                Manu

                                                Carol Taylor
                                                Participant

                                                  Manu,

                                                  Thanks for the update on your Mom. She's quite a fighter, which is great and I know that fighting spirit means a lot to you! Your Priest must have given quite a blessing! I'm glad she's responding like she is and you have this time with her.

                                                  All the best to your whole family, Friend. Keep us informed.

                                                  Lord, we thank you for the fighting spirit you've given Manu's Mom, for the love this family shares, and for the power of Your touch in her life. We know she's got a huge battle facing her, but we thank you for renewed strength and energy. Lord, in Your tender mercy, hold this Mother, let her feel You with her and the prayers going up for her and her family, and use this time to draw her closer to You and this family closer to You and each other. Thank You. Amen.

                                                  Grace and peace,

                                                  Carol

                                                  Carol Taylor
                                                  Participant

                                                    Manu,

                                                    Thanks for the update on your Mom. She's quite a fighter, which is great and I know that fighting spirit means a lot to you! Your Priest must have given quite a blessing! I'm glad she's responding like she is and you have this time with her.

                                                    All the best to your whole family, Friend. Keep us informed.

                                                    Lord, we thank you for the fighting spirit you've given Manu's Mom, for the love this family shares, and for the power of Your touch in her life. We know she's got a huge battle facing her, but we thank you for renewed strength and energy. Lord, in Your tender mercy, hold this Mother, let her feel You with her and the prayers going up for her and her family, and use this time to draw her closer to You and this family closer to You and each other. Thank You. Amen.

                                                    Grace and peace,

                                                    Carol

                                                    FormerCaregiver
                                                    Participant

                                                      Thanks for the latest update Manu. I was wondering how your mother was doing, and I am relieved
                                                      to read that she has improved. I feel that it is almost impossible to know with any certainty,
                                                      how much time anyone has left. This is often completely out of our control, and we have to rely
                                                      on the fact that God knows better than any of us.

                                                      It is really good that she has been blessed by a priest, and this may help her in the healing
                                                      process. So many people don't call a priest until it is too late, but there is no reason not to
                                                      ask one to visit while things are not desperate.

                                                      I pray that your worries will be eased and that your mother will be healed and comforted.

                                                      Frank from Australia

                                                      FormerCaregiver
                                                      Participant

                                                        Thanks for the latest update Manu. I was wondering how your mother was doing, and I am relieved
                                                        to read that she has improved. I feel that it is almost impossible to know with any certainty,
                                                        how much time anyone has left. This is often completely out of our control, and we have to rely
                                                        on the fact that God knows better than any of us.

                                                        It is really good that she has been blessed by a priest, and this may help her in the healing
                                                        process. So many people don't call a priest until it is too late, but there is no reason not to
                                                        ask one to visit while things are not desperate.

                                                        I pray that your worries will be eased and that your mother will be healed and comforted.

                                                        Frank from Australia

                                                        ADSCLT
                                                        Participant

                                                          Manuel,

                                                          So glad to hear about your mom.  We originally spoke when you first came to the site.  My father was in a similiar position as your mom.  I'm heartbroken to say, my father passed away 5/22.  So it gives me joy to see your mom is continuing the fight even though my dad's fight is over.  I still pray for your family and others on the board. 

                                                          Manubuzzi
                                                          Participant

                                                             

                                                            Your note really hit me hard.  I am so very sorry for your loss.  I hate this illness and all the pain it brings.  It seems like it only attacks the best people with the most to lose.  I can’t even begin to show you, especially from a distance, the pain that your note fills me with.  My sincerest of condolences.  I hope that you and your family can muster the strength to pick yourselves up and face your new reality.  I am sending you all my strength all the way from Argentina. 

                                                             

                                                            I do apologize for not sending this sooner, it’s just that I am without my translator (my girlfriend- we are still together, but she has a new job and less time).  And when talking about important things, like this, I do not want to make any mistakes due to the language barrier.   My mother, thank God, has gotten a lot better.  But that is another topic for another day.  I just want to give my condolences to you all and I pray that you find the strength you need to survive this.  

                                                             

                                                            A big kiss and a warm hug,

                                                            Manu

                                                            Manubuzzi
                                                            Participant

                                                               

                                                              Your note really hit me hard.  I am so very sorry for your loss.  I hate this illness and all the pain it brings.  It seems like it only attacks the best people with the most to lose.  I can’t even begin to show you, especially from a distance, the pain that your note fills me with.  My sincerest of condolences.  I hope that you and your family can muster the strength to pick yourselves up and face your new reality.  I am sending you all my strength all the way from Argentina. 

                                                               

                                                              I do apologize for not sending this sooner, it’s just that I am without my translator (my girlfriend- we are still together, but she has a new job and less time).  And when talking about important things, like this, I do not want to make any mistakes due to the language barrier.   My mother, thank God, has gotten a lot better.  But that is another topic for another day.  I just want to give my condolences to you all and I pray that you find the strength you need to survive this.  

                                                               

                                                              A big kiss and a warm hug,

                                                              Manu

                                                              ADSCLT
                                                              Participant

                                                                Manuel,

                                                                So glad to hear about your mom.  We originally spoke when you first came to the site.  My father was in a similiar position as your mom.  I'm heartbroken to say, my father passed away 5/22.  So it gives me joy to see your mom is continuing the fight even though my dad's fight is over.  I still pray for your family and others on the board. 

                                                                ADSCLT
                                                                Participant

                                                                  Manuel,

                                                                  So glad to hear about your mom.  We originally spoke when you first came to the site.  My father was in a similiar position as your mom.  I'm heartbroken to say, my father passed away 5/22.  So it gives me joy to see your mom is continuing the fight even though my dad's fight is over.  I still pray for your family and others on the board. 

                                                                  FormerCaregiver
                                                                  Participant

                                                                    I am so sorry to read that your father has passed away. Please accept my sincere
                                                                    condolences.

                                                                    My prayers are with you and your family.

                                                                    Frank from Australia

                                                                    ADSCLT
                                                                    Participant

                                                                      Thank you Frank,

                                                                      I always notice your name and how you respond to so many of us.  I want to let you know how much I appreciated it.

                                                                      ADSCLT
                                                                      Participant

                                                                        Thank you Frank,

                                                                        I always notice your name and how you respond to so many of us.  I want to let you know how much I appreciated it.

                                                                        FormerCaregiver
                                                                        Participant

                                                                          I am so sorry to read that your father has passed away. Please accept my sincere
                                                                          condolences.

                                                                          My prayers are with you and your family.

                                                                          Frank from Australia

                                                                          ADSCLT
                                                                          Participant

                                                                            Manuel,

                                                                            So glad to hear about your mom.  We originally spoke when you first came to the site.  My father was in a similiar position as your mom.  I'm heartbroken to say, my father passed away 5/22.  So it gives me joy to see your mom is continuing the fight even though my dad's fight is over.  I still pray for your family and others on the board. 

                                                                            Manubuzzi
                                                                            Participant

                                                                              Hello again to all,



                                                                              First, Thank you all for all your responses.  We have passed the recent storm, and I feel I should tell everyone how my mom is doing.  She has been checked into the hospital due to weak blood, a urinary tract infection, and another more complicated infection in the wound where she had the brain surgery on 2/23.  It made her get worse in general, with fever and muscle pain.  After a few days in intensive care, with blood transfusions and a few procedures to drain the infection from her head, and a visit from a pretty famous Priest here that came to bless her, my mom is doing better!  It is amazing how well she has recuperated her speech and general alertness and understanding.  Also, it seems that she has more energy now and a renewed strength.  And the rest of us do too!  Like my mother said to the Priest, "it's not going to be so easy for God to take me to that other world."  Next week, we start another session of Temodar.  And, if it's God's will, we will be able to stop the growth of the brain tumors, and we'll start with IPI.  Carol, Thank you, from the bottom of my heart, for your kind words.



                                                                              Manu

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