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KatieB

8/30- Katie's Dad

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It has been 6 days now. Dad was originally brought in from complications due to dehydration and malnutrition (appetite just went away, shakey and unable to move much) And testing followed (MRI, Bone Scans, blood tests) to see why he has been getting weaker and weaker lately and unable to walk or sit up by himself.

For five days we were lead to believe by the Oncologist-on-call that those tests came back OK....IV fluids continued and physical therapy was started to rebuild dad's strength a few days ago...but still Dad didn't seem to be getting better, in fact he has become even more incoherent and still doesn't eat without spoon-fed encouragment.

I questioned why the nurse kept giving him pain meds as Dad has no mets that hurt (shoulder & brain- relieved with radiation) and she let it slip that dad's cancer is through out his skeletal system now.

My mom questions whether the night nurse is right or wrong as the Onc-on-call told her the tests were good.

Because of the holiday weekend, Dad's regular Onc will not be available until Monday or Tuesday, so aside from the devestating news that we don't know if we can trust, we are still in limbo.

I don't know what will happen next.

P.S.

IT IS NOT OVER> As long as he is not in pain, being hydrated, is trying to eat and can tell me he loves me, THERE IS HOPE....where there is breath and LOVE there is hope (I've said it to all of you 100 times) and for the folks who send me messages telling me to prepare for his death, hope he doesn't linger...etc.......your messages do nothing but break my spirit, upset me terribly and make me angry, and go against everything Lung Cancer Survivors is about.....look at the odds that have been broken here ever day!

SHAME ON YOU...save those messages for when he is gone...whenever that may be.

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Oh Katie, How heartbreaking. So sorry for what you are all going through. I can't imagine why they would not be honest on the scans, hoprfully the nurse mixed up patients. Give em hell Katie.

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Yes, Katie, he is here today, and that is all any of us have. Dr. Bernie Siegel said "You are either living or you're dead." Your dad is living.

My parents are 75 and I know each time I spend with them could be the last. There are heart attacks, strokes, car accidents. And it could be me that goes. When I get really down about my situation, I think back to 9/11.

I wish I could find special words of comfort. Please know, as you are holding your dad's hand, and talking with him, that I am holding your hand as well.

gail

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Katie,

Your Dad has such a strong "will." Knowing how badly your Dad wants out of the hospital might provide him with the incentive he needs to get better. You are also right about the pain meds, they could be making him lethargic. what about a home health aid to help out your mom while you are at work? I remember getting my Dad an electric bed to help him sit up, which also had a hanging bar for my Dad to use to help pull himself up. Praying for your Dad.

Cheryl

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Dear katie

I was under the impression that the doctors HAD to tell you the results of the tests done on a patient honestly, I cannot imagine why they would not tell you the truth. I know that years ago they did not always tell people the whole truth but now they HAVE to. I don't know where this nurse got her information but I would be on the phone to whomever is covering for your oncologist screaming at this point. She had no right to tell you and your mom what she did and I am sure she will catch holy hell from the doctors when they find out.

I firmly believe in what you quoted, where there is life there is hope. I cannot believe that people would send you those kind of discouraging messages, shame on them is right!

You hang in there girl like you always have and just keep on doing what you have been doing for your dad. Jesse has been a fighter all along, no one should give up on him. I appreciate your updates on your dad, he is always in my thoughts and prayers. I would find out WHY they are giving him the pain meds. Get on the phone and get whoever is covering to give you some answers today.

Praying for you harder than ever!

Bess B

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Dear Friend,

Maybe the nurse is confused about bone mets and doesnt understand that doesnt mean the whole skeletal system. I agree with above post, try to find someone you can speak to today, it is terrible waiting for news.

YOUR DADDY IS ALIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! He has you PRAYING, RESEARCHING, ASKING QUESTIONS, (and even yelling at people when necessary LOL)!!!!!

I am going to a Healing Mass for people with cancer, (I'll either bring my father or go on his behalf) in honor of St. Peregrine, patron of cancer, and Jessee and the rest of you will be remembered that evening.

You hang in there, girlfriend, and take the advice you give us when we needed you.

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Katie,

I agree with the above posts. If you can't get a hold of your dad's oncologist, INSIST on speaking to someone at the hospital and explain your concerns. Waiting till Tuesday to hear confirmation or not on something so serious is not acceptable for you and you need to scream bloody murder till someone answers you. Maybe you have already done this, and it hasn't worked, in that case I'm sorry!!! If you haven't, throw a fit until they call Security.

As far as the other, I just unsubscribed from another message board because there was no hope. One of the major draws of this board for me is the hope that is here and the courage of the patients and/or their families in fighting this disease. Since the day that I was diagnosed, part of me, deep down, has acknowledged that I can die from this...I think that's a fact that most of us carry in us and don't need to be reminded of! That said, as long as I am alive, I am about life. This board is about life and you are one of the ones that has so much hope to offer AND so much fight. You set an example of how this disease needs to be fought and I admire you for that!

You and your family will be in my thoughts Katie!!

Debi

47 years old

Stage 1A-nsclc

Surgery June 16, 2003 - Mid and upper lobe removed

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Katie,

I am sure you have done what i am about to say but if not then go for it. Why can't you look at the hospital medical records today to see if you can make heads or tails as to what is going on with your dad. If the nurse is right, she had to have read it in those records.

Also, who ordered the pain meds. The onc-on-call at the hospital or your father's regular onc team who is on call? You said he wasn't in pain, why the pain meds????? Something is wrong somewhere... I would be beside myself on this issue...pain meds can and do make a person incoherent.

Also, as someone else has said, call the onc who is on call today that is with your father's regular onc...have him come over to the hospital.....unless that is who you are referring to.

I sure hope you get to the bottom of this before next Tuesday.....

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KatieB,

I know this is going to be hard to do, but try not to be discouraged. The doctor has not confirmed what the nurse has said, and perhaps as LindaMRG had said, maybe the nurse is confused.

Postitive thinking is so important....for the patient and us all. Dont get down my friend.

As for your "p.s."....I couldnt agree with you more. Sometimes I have to battle those same thoughts expressed from my own mother! But you know what..forget that..not until a doctor tells my family to put my fathers affairs together will I ever give up on the hope of him being a survivor!

God bless

Tracy

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Thanks all of you.

The Oncologist on call today confirmed that the cancer has spread throughout dad's skeletal system. There is a long "p" word for this type of condition where the cancer infiltrates the blood and into the bones.

We have been devestated all day. Saw my mom break down for the first today. It's been very hard. Will keep you all posted. Still praying and still hoping that somehow, someway, God will prove to me that miracles exist.

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Dear Katie,

I'm so sorry for this news. I felt so encouraged when you said he wanted to eat and that he was in the hospital having fluids and nutrients to build up his strength. Have they suspended treatments while he's in the hospital? Any word on what the next course of action should be? You know we're all here for you and praying hard that he can continue to fight.

Jenny

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Katie is off to the hospital and I wish there was more I could do to comfort her. (I am staying at home watching our son and I have a bad cold and dont want to add that into the equation) From the news I am getting back, it is not good. Her father is very incoherant and unable to communicate other than a random response here or there.

Katie is truely the strongest person I know. I , being big and bold, thought I was rough and tough and the strongest person around until I have watched Katie through all of this.

I am worried not only for Katie, but for her mom. Her mom has been very dependent on Jessee and fear how this will physically effect her. Katies parents are the nicest and most down to earth people I know.

When Katie and I met 13 years ago, she was a mere 17 years old. I fell in love with her shortly after meeting her and I will have to say the age didnt matter. Unlike most parents, her father welcomed me in and met me and before long, they actually accepted me into the family as one of their own children and I feel towards them as parents. I still love my own parents, but feel lucky to have 2 sets.

I am just asking for everyones prayers and thoughts....

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Thanks so much for keeping us updated. I know that my whining-about-life stopped today when I read her post about her dad. You have been a source of strength to her as well.

gail

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Dear Katie, Rick and Family,

Hold on to the Hope, Katie. I'm holding on to mine.

Rick, I knew that you had married into a wonderful family (picked that up by getting to know Miss Katie.), but they wouldn't have accepted you so willingly had you not been pretty wonderful yourself.

You are all blessed by the love and care you extend to one another. Don't lose sight of that. It will see you through anything this world can throw your way.

Prayers coming to you, Katie and Family.

Fay A.

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Oh, Katie and Rick. I can't begin to express my sorrow for what you all are going through. You all have been in my prayers. You both have not only been a driving force in Jessies battle, but in my dads as well as the others that have come to this message board for information and support. You are clearly good people, and I am so sorry that you have to go through all of this. Please know that you and your family are in my thoughts and prayers. My only wish is that I could do more. Katie and Rick, you and your family are very much loved, here. Please know that. Deb

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