Hi all

• Author
  Posts
• October 19, 2007 at 5:43 pm #19545
  daddy2noah

  Member

  Hello everyone.

  I was just about over the initial shock of finding out that my only child, Noah, my little angel and best friend in the world, has Cystic Fibrosis, when I found out that my father has MDS and it’s progressed to the point of them expecting about 6 more months of life for him

  He’s 76 and currently in Jefferson Hospital in Philadelphia, and he’s coming home tonight (been in Jeff for 3 weeks now).

  Noah, my son, is 14 months and was diagnosed at birth with CF. he’s healthy and doing awesome but it took me about a year or so to be “ok” with this… well… as “ok” as one could ever hope to be.

  I’m done questioning “why”. I surrender to the fact that I will never understand this thing called life. I consider myself extremely blessed, even in the face of the current events.

  I’m praying for all of you and your loved ones. I will visit here often as i need some folks who understand what I am going through now.

  Thanks,

  Jay

  October 19, 2007 at 9:27 pm #19546
  jaxem

  Member

  jay
  why is right! 10 times more prayers to you as I’ll be thinking about what you’re going through. when a child becomes afflicted, i can’t think of anything worse. i’m in the philadelphia area too, so if i can be of any help, e-mail me. be brave and strong!

  October 19, 2007 at 11:48 pm #19547
  Bkwits

  Member

  Hello Jay,
  What huge challenges you have faced in a relatively short time. My heart goes out to you. Please remember that your dad’s prognosis is an estmate or even a guess. In any case, cherish the time you have with him. I will certainly remember you and your loved ones in my prayers.
  Barb

  October 26, 2007 at 11:43 pm #19548
  Bec

  Member

  Dear Jay, I am heart broken to read your post and wanted you to know I will pray for you and your family.

  We have raised a beautiful daughter that is in the 9th grade in HS. She has CP and walks with forearm crutches. Today we found out she was nominated as the freshmen representative for Homecoming Court. She has danced, tried out for cheerleader ( which she did not make but neither did 40 other girls), gymnastics, swim team, takes piano, walked the mile in gym with her crutches, wants to drive and so much more.

  We have raised her with three brothers. I have told her she can have her five minute pity party if she wants but that is all that is allowed in a day. She complains about wearing her leg braces but I tell her one brother has to wear a retainer and head gear, one brother needs a brain vitamin(ADD) and the other has allegies and has to take breathing treatments. We all have our issues.

  But do not think I have not cried when she can not keep up with some “witchy” girls and they run off and leave her. I pray alot….. but she is beautiful, happy, and loves life.

  My Dad and Mom have always been two of Carolines top fans. Dad has been battling MDS since 2000.
  We feel very blessed that he is still with us.

  I just wanted you to know that we understand. We all have different crosses to bear but like you I will count my blessings and keep my crosses.

  Don’t forget to take care of yourself too.
  Bec

  November 16, 2007 at 3:29 am #19549
  daddy2noah

  Member

  Thank you all so much. I’ve been completely swamped getting dad home and comfortable and trying to help him get into a routine again.

  Today though, they called in Hospice and told me he’s got about a week to two left, they are stopping all treatments and transfusions.

  I was not ready for this, although I am sure I never would have been.

  I feel honored to have this man as my father, he is such a good guy.

  My son will keep me going.

  I’m just not ready for this.

  Thanks again. I will be back.

  November 16, 2007 at 6:48 am #19550
  BethW

  Member

  Jay, you will be in my thoughts and prayers. I know you must have been very surprised and sad to get this news today. I am so sorry to hear about all you are going through. Your father sounds like a wonderful man and I know he must be very proud of you for taking such good care of him and being such a loving son. He has taught you to be a wonderful father and Noah is so very lucky to have you. Please do come back and let us know how you are doing. We’ll be thinking of you.
  Beth

  November 16, 2007 at 5:38 pm #19551
  daddy2noah

  Member

  Thank you. These posts inspire me. Thanks everyone for taking the time to reply to me. I really appreciate the thoughts and prayers. I’m send ours your way as well.

  The hardest part for me right now is that my dad seems better today than he has in months. i just sat with him for a while before I came to work today and he… “has it together”.

  He’s talking about current affairs. He’s asking questions about recent events with true sincerity. And yet, he has only a week or two left? Plus, he doesn’t have any idea that he only has a week or two left, or that they are stopping all transfusions, etc…

  He’ll know today, I am sure, as Hospice is meeting with him around 1pm. I don’t know if they’ll tell him or not, but he knows what Hospice is so he’ll figure it out.

  I made him a promise many years ago never to hide anything from him, because my sister hid something from him that almost destroyed him, and I promised never to do that. I have an overwhelming feeling of guilt for not telling him today. I’ll tell him soon if they don’t.

  I have one part of me that beleives that one doesn’t really need to know these things… but then another part of me thinks that he might have something to say that he wouldn;t say if he didn’t know the end was right around the corner.

  Now I am babbling

  Thanks again everyone!

  November 16, 2007 at 8:23 pm #19552
  daddy2noah

  Member

  Can anyone that’s been through this maybe help me answer a question?

  I imagine he’ll die from bleeding on the brain due to low platelets now that they are stopping the transfusions. They say his brain has already begun some minor bleeding again.

  Will this become painful? Right now he’s in no pain, nor has he been. If it is painful can Hospice treat the pain?

  I can not imagine me handling this very well if he ends up in pain.

  November 17, 2007 at 12:25 pm #19553
  choijk

  Member

  Jay,

  I’m in a similiar position as you are. My father does not understand the severity of his MDS. I also take the position that one doesn’t really have to know those things but I do wonder, if he knew that his time on this Earth is short, if there is a last wish or something that he wants done before he leaves. It’s a difficult issue that no one really has an answer to. I’m sorry I can’t offer any words of wisdom other than to share that I don’t know what to do as well.

  As for what your father may physically experience within the next couple of weeks, that I don’t have an answer either. I recall reading somewhere that for patients with leukemia who decide to cease all treatment… usually the patient dies peacefully. Slowly the patient will grow weaker and will sleep more. Eventually, they will die in their sleep. This is not first hand experience, but I find comfort in that, if it is true.
  Jay, my thoughts and prayers are with you, your father, and baby Noah…

  June

  November 17, 2007 at 1:02 pm #19554
  BethW

  Member

  Jay:
  I’m not sure about what your father will physically experience either. My husband is showing new problems all the time too with one thing being low platelets. I can tell you, however, that we had Hospice for my mother and I have never seen such a loving, caring, competent group of people in my life. They made sure she was never in pain and were loving with her as if she were their own family. I have heard the same thing from people all over the country. They were also wonderfully supportive for the family too, and I have always been grateful for them.

  You and your family are still in my thoughts and prayers everyday, Jay.

  Beth

  November 17, 2007 at 2:03 pm #19555
  daddy2noah

  Member

  Thank you so much.
  All I can ask at this point is that he doesn’t suffer. I was with him last night and he was feeling quite well. They decided not to send him home until this morning though, as Hospice is deliverying his bed this morning (he’ll be in a hospital bed at home now).

  I asked him last night if he would be up for borrowing my video camera and filming something of himself talking over the next week or so, for Noah when he gets older. He agreed and I think this will be a good thing for Noah. I’ll upload the video and burn it to CD and we’ll keep it forever

  Thanks again for all of the encouraging support! We’re also praying for all of you and your families! I know that I am not alone here.

  Jay

  November 18, 2007 at 2:18 am #19556
  kat58

  Member

  Jay,

  My mother died in July of 2006 of this disease. She said she was not in any pain. She was coherent up until the end. Her platelets dropped, and she bled gastrointestinaly. She made the decision to stop the transfusions and died within a week of that decision. It was very peaceful, and Hospice made her comfortable until the end. I am very sorry that you are experiencing this, but knowing the end was near gave me the chance to tell her what I needed to say. God Bless.

  November 18, 2007 at 10:48 am #19557
  estee

  Member

  My husband who probably had MDS that progressed to AML did not seem to be in pain. He was given “weeks, not months” by his doctors. He was home for about 3 fairly good days then went to Hospice the day before he died. They treated him well there and he said he was comfortable. They did sedate him although he had not seemed to be in pain. He hardly seemed aware of anything the last several hours although he did react when his youngest son came into his room. He passed quietly about 3 hours later.

  November 18, 2007 at 9:53 pm #19558
  daddy2noah

  Member

  Thank you all so much. This is all very reassuring to me.

  Right now he is laying in a hospital bed in his living room and he’s surrounded by those that he loves. He’s laughing and joking and having a great time… I now know this is how he’d want it… no doubt about it. He seems so alive… hard to believe it’s coming to an end… but he’s so happy right now. He’s holding Noah (my 16 month old son, his grandson) and Noah is just kissing him over and over and they are laughing together.
  This makes me very happy.

  I’m praying for a painless transition and you have all made me feel like that is a probability Thanks again!

  November 19, 2007 at 7:17 am #19559
  daddy2noah

  Member

  Update: within hours of my last post my father grew extremely tired and got quite confused about things happening in the room around him.

  By the time I left his house, he was asleep and breathing very shallow but rapid.

  It’s amazing how quickly he changed tonight, although we may have wore him out, he was laughing pretty hard all night.

  I want to post a little bit about him and his life, but I need some sleep first. I’m working a 16 hour day tomorrow and didn’t sleep much last night.

• Author
  Posts