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Father of the world award to my dad -want to do more for him


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I don't really know why I am posting anything on this message board. Maybe I feel safer because no one out there can see me crying and maybe I feel safer knowing that most of you have gone through this either personally or with someone you love! Either way, this is the story of my father who has cancer and of a family that loves him more than anything!

As a baby my mother and father wanted a girl. Lucky me I was born a girl. They had 6 boys and one girl of their own and they still wanted another girl so low and behold, along came me. Straight from Catholic Social Services adoption agency. I was 2 months old when they brought me home from the hospital and dad always said that I was the "good luck baby" because they got me, he got a good paying job, and they had just bought their first home in Grand Rapids Michigan which they ended up living in until approximately 2000. Maybe dad called me the good luck baby but I always knew that I was the lucky one.

As I grew up I ended up marrying a man that was basically a bum and my parents -- although they like him as a person -- hated the fact that he didn't take care of me or my daughter. We ended up divorcing and I can remember my father walking out of the court house with me saying "Free at last! Free at last! Thank God almighty!" He was there for me that day and he has been there for me every day of my life.

After years of rebuilding my credit back up since my divorce I was finally working at a good job and able to purchase my first home. So in Oct. of 1998 my daughter and I moved in to our first house. And that was when my dad and I really started to spend time together.

We worked together fixing the kitchen, the living room, the bedrooms, and then the big fix -- dad completely gutted out the bathroom and remodeled the entired thing. From nothing but the studs on the walls to new tiles in the shower and in on the floor. It was the first time that he was ever able to work on a bathroom from start to finish. He loved it as he is a work-ahlolick!

Out of all the kids in our family I was always the adventurous one who was in and out of trouble. Dad was always there still loving me even when him and my mom were both at their wits ends. Now as a parent myself I can't imagine the pain I caused them as a teenager but we are past all that now. Now my daughter is just like my mom and she is grandpa's girl too!

The bathroom was finished and my company closed down. Now my dad was worried that we would end up losing the house since I had no income coming in. After temp jobs and hard struggles I ended up getting a great job again making comparable money to what I was at before. I started there in May of 2004.

It was still a very hard time for me though because I was seeing a man named Todd for 4 years and we had taken time apart. After my first divorce I was scared to death of loving and losing again. Mom and Dad were there through all the tears again. Are you seeing a trend here?

In 2003 my mother began volunteering for Hospice care. She was 67 years old and had never worked outside of the home but she has always had so much to offer others that it just was perfect for her. She has this way of just being there that makes people feel better. I'm not sure how many families she has worked with by now but I know that they look at her as if she were a part of their families as well. Just being there for the living and the dying is more than I can ever imagine giving of myself. My mother is incredible. Looking back now I wonder if this was a training that God was giving her for what she would have coming at her in the future.

Then in August 2004 we recieved the horrible news. Dad was diagnosed with cancer! We were mortified. How could a man who had never smoked, took care of himself, ate right, worked hard his whole life, and was always giving to those around him have to go through this??? I just didn't -- and still don't -- understand this. Not only was this cancer but we found out soon enough that he was stage IV with non-small cell lung cancer and lymphoma, non-hodgkin I believe. The cancer was basically spread from his shoulders, neck, stomach, lungs, and back.

We started out with my father going through chemo therapy. The first few weeks were awful. He was sick all the time with vomiting and just basically dealing with the pain he had in his stomach. I was still in shock as we began this process and at first I tried to just be there for him and my mom -- trying to be as strong for them as I could. I didn't want anyone to see me crying so that I could show them my stregnth to lean on me I guess.

One night I was sitting outside on my front steps, I basically just gave in to the tears. As I sat there praying and just asking God why, Todd was driving past my house, seen me and pulled into the driveway. We began talking and working things out. I told him about my father and he was there for me to lean on. Maybe God was answering me the only way that he could that night, I don't know.

Well, we got the results back from the first cat-scan and it looked good so the doctors continued on with the chemo therapy. Four more weeks of being sick and having to go through this again.

After that four weeks dad went in for his next cat-scan and the news was not good. The cancer was spreading to his liver and the original spots were getting bigger. At this point we took him off chemo therapy and changed to an experimental drug called Almita. That was just before Christmas if I remember correctly.

After the first set of bad news I guess I was not feeling very optimistic. Todd and I had began going to re-marriage classes and we now were sure that this was what we both wanted. We had our last class and then had a meeting with the pastor at our church who basically asked us what we were waiting for. At this time we decided that we would move everything up because I wanted more than anything for my father to not only be there at the wedding but to give me away as well. We basically put together this wedding in 2 week time frame!

Everything was perfect! My dad was feeling great that day. The hair dresser did such a great job on my hair that my dad mentioned it again at Easter Sunday in front of the entire family. The flowers were great. Both my daughter, Jennifer and Todd's daughter, Ashley looked like little models.

As we began walking down the isle my dad started to cry as his emotions are just crazy right now. Then after that we had the reception right there at the restaurant that is attached to the chapel. We were served a 5 course meal and my dad ate wonderful that day! Todds family and mine were both elated that we finally were doing the right thing. And my dad leaned over to me and said, "You got yourself a real good man there!" Todd and I were married on December 23, 2004.

From that moment forward I felt great about my decision to marry Todd and I will always know that my dad was proud of my husband! That means more to me than anyone will ever know.

Being that was right before Christmas and my dad was not having chemo therapy that week, our parents got together again to celebrate Christmas dinner at Todd's family's. Again Dad was able to eat pretty good that day.

Shortly after the holidays we recieved bad news again. The Almita did not work even after the first 4 week sessions.

Now we are just trying to keep my dad comfortable. The doctors have discussed trying KRX-0401 (Perifosine) but Mom does not want to put dad through any more pain or suffering than what he needs to go through. I have tried to research it for her but I am not finding anything out there on this newer drug as it is still in the clinical trials. So now we are just waiting and trying to be together as much as possible.

My father is 71 years old now. He has lost so much weight that he is now down to 124 lbs. He is taking morphine and other pain killers so much that he is pretty much out of it most day. Since Todd and my wedding just a few short months ago the cancer has pretty much taken over my dads ability to eat, sleep, walk, and just live a normal life. Just since the wedding he has lost more than 20 lbs. and his eyes have a very sunken in look to him. I see that we are near the end now and I'm scared. Scared because I can't do anything to end my dad's pain. Scared that I can't stop my mother from watching him go through this.

I love my parents very much and I wish I could make all their pain go away. If anyone out there reads this and has anything to offer please feel free to contact me. I would love to know more about Perifosine before it is too late. I will not advise my dad to take this drug one way or the other as this has to be his choice, but I would love to be able to give him as much information as possible to make an informed decision. That is the least that I could do for him with everything they have done for me!

That is the story of how I became the daughter of such great parents. I hope you enjoyed our story!

_________________

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Mary,

That is a beautiful story. God Bless you and your family as you go through this ordeal. All you can do is look into every option to make sure that your father has received the benefits of all the latest technology and treatments. You didn't mention a specific facility so I can't comment on that. Some of us that have been around quite a while are reluctant to accept that all has been done until a second opinion from one of the more reputable Comprehensive Cancer Facilities have more or less thrown in the towel. Bottom line, there may be one last chance you haven't heard about. There are several examples on the board recently, ie Bill's wife.

We are all here for you to provide whatever support and ecnouragement we can muster. Stay positive and press on. God Bless you and your family.

CharlieD

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Hi Mary,

Welcome to our family, Sorry you had to find us but I am sure you know by now we are a great family for support and comfort.

You story brought tears to my eyes as your dad is a wonderful man. He also is so proud of all your accomplishments when you were down and out. But never out becasue you had him. God sent you to your parents as they are part of your salvation.

I do not know about that drug, so I am sorry I cannot help you there. Hopefully, someone out there does, and will answer you.

Prayers sent to your dad.

Congratulations on your marriage. Todd sound perfect for you. You are so lucky to have two wonderful, caring men in your life.

Keep us posted and know we are always here for you.

Maryanne

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Hi Mary,

from one Daddy's girl to another- I'm giving you a gentle cyber hug right now.

Your story brought tears to my eyes. I wish I had answers or knew more about this new drug, but I just don't.

I do know what it's like to watch your dad, your hero, the one whose always been there to pick you up- go thru such a hard battle with this disease.

Try to keep some hope in your heart- it's what helps us go from moment to moment and day to day. Spend as much time with him as you can, and listen to what he wants in all of this.

Maybe he needs a break, to regain some strength or stamina to be able to begin another treatment, one that will be successful- or maybe not.

Just know that we all understand, and that we are all here for you.

I'm so sorry you have to be here- lean on us.

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Thank you for sharing your touching story.

Mary, please do not be Mortified by lung cancer. Be concerned, scared, proactive, hopeful and brave, but NOT mortified.

The perceived stigma is just that: PERCEIVED.

Please help us to change the perception.

We add our prayers to yours for your whole family. We think your story is inspiring and joyful.

Love to you dad and mom and to you, too!

Pat and Brian

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Mary,welcome to our support family.You will find many knowing and caring people here.I'm very sorry you and your dad and family have been stricken with cancer.

There is a section on the navigation board to the left called ask the experts.It is possible that they may know something about this new drug.

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Mary,

Your story is beautiful and very touching. Your "Daddy" sounds like he is quite a loving, caring person. I wish I could give you information about the drug you ask about , but I don't know anything about it. I just want to say , as others before me have said, that every case of cancer is different , and yes I've read time and time again about some very remarkable turn arounds. Having a health team that you can trust and communicate with is the best place to go for information. I want you to know that you, your dad and your family are included in my prayers.

(((Hugs))) & prayers ,

Sue

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KRX-0401, or Perifosine, is the prototype of a new group of anti-cancer drugs referred to as alkylphosphocholines that appear to be potent inhibitors of the activation of Akt, a protein in the body associated with tumor survival and growth. Akt appears to be inherently activated in approximately 10-50% of most tumor types and is also believed to be activated by, and thus confers resistance to, most anti-cancer therapies. Once activated, Akt exerts its cell survival and cell proliferation functions. Based on its prevalence across cancer types and importance in the control of cell survival and cell proliferation, Akt is considered to be one of the most important cancer targets being researched today.

In pre-clinical models and early clinical trials, Perifosine displayed impressive anti-tumor activity, as well as anti-Akt activity. Treatment with Perifosine did not result in myelosuppression, or toxicity to the bone marrow, which is a major side effect of most traditional anti-cancer treatments. Accordingly, we believe that Perifosine is well suited for use in combination regimens with established anti-cancer therapies and, therefore, represents a significant market opportunity.

In proliferation assays, Perifosine inhibited the growth of a variety of human tumor cell lines. Perifosine was also tested in vivo in a number of animal models and shows significant single agent anti-tumor activity. Additionally, Perifosine strongly enhanced radiation-induced apoptosis in human leukemia cell lines, as well as the anti-tumor activity of cisplatin, Adriamycin, and cyclophosphamide in the DMBA-induced rat mammary carcinoma model. The combination regimens were superior to chemotherapy alone and the combinations were well tolerated.

Three Phase I studies of Perifosine have been completed in Europe and two other U.S.-based Phase I trials with the NCI pursuant to the CRADA arrangement have been completed or are nearing completion. Data from these trials demonstrates that Perifosine is a safe drug with a reasonable toxicity profile and no observed myelosuppression, or bone marrow suppression. The dose limiting toxicity in each Phase I study was gastrointestinal toxicity, primarily nausea and vomiting. Perifosine also displayed preliminary single agent activity as evidenced by a total of two partial responses and 16 disease stabilizations in these heavily pre-treated refractory cancer patients.

We believe this data confirms the anti-cancer activity of Perifosine and that Perifosine represents a new class of anti-tumor agents that promote apoptosis and block cell growth signals.

Please see "Clinical Trials" for more information.

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Copyright © 2004 by Keryx Biopharmaceuticals, Inc.

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Mary~

Welcome from another Michigander. What a sweet story. I got a kick out of your dad's "free at last" comment. Reading the info Charlie posted the drug sounds promising. There is also Tarceva which is taken orally and may help keep the cancer from growing. I wish you lots more time with your dad.

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Mary, your story brought tears to my eyes and made my heart feel warm.Your father truly sounds like a saint. Hang in there--don't give up hope. This site is such a stress relief for me. There are many people who care and have alot of info and encouragement to offer. Stay strong for your dad. God bless you and your family, Nancy C

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Thank you all for your responses.

I wish I felt up to responding to each of you individually but as it is very late, and for me that is the best time to be alone with my thougths, there is just not the time to do that. I really enjoy the time in the middle of the night right now when both Todd and my daughter are in bed. I have taken some time off work -- mainly to spend as much time with both mom and dad as possible and to get myself stronger emotionally too. I'm not sure that this is the best thing for me right now but I am feeling kind of selfish I guess, I don't know. I know that I have tried to work through some of this and that wasn't working so I'm trying things my way for a while. Depression is a terrible thing to have in life but I want to feel and experience the grief that I am going through right now so I am. As one person put it to me there is no right way or wrong way to go through any of this, it is just not a fair thing but it is a part of my life now. I so appreciate honest people right now. You can really see the honesty when it comes to hardships in a persons life.

My dad really is a great man. I wish that I could tell you all the wonderful things about him as I know that I really didn't even touch how giving he really is. I can remember him taking my grandma to the grocery store every Friday night through out my childhood and then cutting her lawn during the week -- this was after taking care of us 8 kids and our own house and lawn. After Grandma past on he took care of some of the older neighbors lawns in the neighborhood who were not able to do it for themselves. Throughout my entire life I can not remember a night that I would walk into our living room and not see him rubbing my moms feet. He loves her so much even after all these years. I told Todd that it is probably better that he is going through this rather than my mom because watching her go through anything even similar would just kill him, or at least his spirit. She was diagnosed with Epilpsy a few years ago we didn't know exactly what was going on with her health and he was just in tears thinking that he might be losing her. I think that I have inherited his emotional side. But in saying that I also realize that we all have stories that are like that in which we would all like to share almost immediately about our loved ones and they are all awesome people in their own right. I just pray that I might some day measure up a little bit to where him and my mother both are today.

As I said, I took some time from work, (2 weeks right now) thank the Lord that I am working for a company that is understanding of my situation. The worst part is not knowing what to say to my parents when I visit. Mothers day was probably the worst. Actually I ended up chickening out from even going there that day. Todd's parents every year have brunch together with his Grandma (who is 90 years old and so young at heart that she makes you feel old!), His sister, brother-in-law, and their 2 children, us and our kids. Brunch was fine but all morning I felt that awful feeling coming on, starts with the headache and just kind of grows from there. After brunch my daughter had a terrible head ache so I called mom and told her we would be over later as Jennifer was laying down taking a nap. Then after 2 hours of thinking about how I needed to get my strength up and drive over there I called my mom back and asked if she minded if we came over the following day instead. She said that was fine. My brothers were all there so I didn't feel quite so bad but of course I still felt terrible. Plus I'm sure that if my brother Jim could get a hold of me to ring my neck he would! He just loves me and I think he likes to deal with me using "tough love" to get me on the right track. He is just exactly like my dad! A younger version but my dad through and through if that is believable!!! (Him and I are the closest out of all my siblings, he is the second oldest brother and the one who is most encouraging to me about how to live my life the best way that I should. He is a great man too and I adore him to death--maybe that is why I was concerned that I was upsetting him on Mothers Day??? Who knows???) He is also the brother in the picture here with my dad.

Monday and Tuesday I went over to Moms and we had a wonderful visit. Monday dad was so tired that I didn't get to see him at all as he stayed in bed the whole time and I just figured that was probably best for him at that time. He is sleeping a lot lately and his appetite is pretty much gone all together. Still, mom and me got to talk and I was able to kind of get her to myself so to speak. Sometimes with so many kids that can be a challenge unto itself. I started to get extremely emotional and teary eyed though and I could tell that was making my mom uncomfortable. I tried to hold it in but I am just not that way. My mom says that I get there from dad. She likes to be the strong one who holds everything in. I'm really worried about that. Even now she only crys when she is alone, I can tell when I'm on the phone with her though when it is a hard day. Makes me want to be there for her more and more. Eventually she will have to let some of this out and I want someone to be there. Between all us kids, she shouldn't have to go through this like that.

Then on Tuesday Jennifer (my daughter) and I went back over. Mom seemed really happy to see Jennifer. This was a much better, much more relaxed visit. Dad was sleeping but he was on the sofa and kind of kept coming and going from the converstation. He is just so thin now that it breaks my heart. He was telling me that he was sleeping Monday night and he now trashes in the night with his arms and legs, well he ended up hitting himself in the stomach/groin area and was basically awake from 3am on from the pain that caused. As if he needed more. Plus the medicine makes him so out of it now that it seems strange to me, sometimes you don't quite know if he is really "there" or if he is just kind of there. I noticed too that my mom never took her eyes off of him for more than a few moments at a time. Even Jennifer noticed that.

I'm afraid that I am losing him now more than ever. I'm not ready for that -- that is for sure. I want to tell him just how wonderful he is to me but each time I try to get this conversation going he gets teary eyed and changes the conversation. There are so many things that I want to say to him. So much that I feel I have to tell him before it is too late. Sometimes I think that I should just write it all down so that he can see it when he is ready. That is where I am at right now. Any ideas?

As far as Perifosine goes, I have seen most of what you have googled me Charlie, and I really appreciate it. The problem is that I am not sure what my Mom wants me to say. I will show her what you have posted though and perhaps that will be the best way right now. I know that I can't make this decision and that it must be between my mom and dad. My choice would only be a selfish one. Maybe all of us think selfishly when making this decision I don't know. I will mention some of these other meds that I was seeing everyone discussing though, especially the Tarceva. I know that one of the concerns from my mom is the idea of taking anything through an I.V. again and having to drive to the cancer center for the medication. Not to mention the nausea and the vomiting. A major concern is that dad is already lost so much weight. Maybe this might be something they can discuss together with their doctor and come to an agreement.

Again, thank you all of you for being there for me and my parents. I think that I will print out all of your responses and let them in on this web site as well since they want nothing to do with computers. Mom would just rather sit down and write a letter out by hand still, can't teach an old dog new tricks and all. Haha, I just called mom old and she doesn't even know. Ya, she'll get back with me on that one later. lol. I'll write again soon, promise....

PS -- Katie and Sue, thanks so much for the cyber hugs, we Daddy's girls can never get enough of them that is for sure!!!

Patkid, I'm not so much Mortified as I am scared. Hopeful is something that I am working on right now.

Don -- I'm glad you enjoyed this story, I'm hoping for way more to come!

Nancy -- you're right about this site being a great stress relief, and yes, dad is a saint -- in my eyes anyways.

Ry -- I'm gonna definately discuss Tarceva with my family. And I'm curious what part of Michigan you are from?

Frank -- I will definately use the Ask The Experts in this sites, thanks so much!

Maryanne -- I do have 2 great wonderful caring men in my life, not to mention all my brothers. God has looked out for me throughout this last 35 years of my life. Now I need to remember that most of all. Thanks for the reminder.

Ginnyde, Thanks for the fast response, I see that you too are a night owl!

And last but not least, Charlie, I will give my mom the information that you googled me. Thanks so much.

I hope that I didn't miss anyone. I wanted to say something to each of you -- didn't take as long as I thought it would. Thanks again.

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Hi Mary,

Being a niteowl like yourself, I read your wonderful letter of tonight and what a wonderful family you have. Seems like the closer you are, the more difficult decisions are to make. It would appear to me, a total outsider with some experience in dealing with this horrible monster, that you now need some second if not third and beyond opinions of some medical experts, and without delay. It is not totally a family decision in my opinion unless you want it to be. It may not be as bleak as it seems to the family. Many have bounced back. Practically all of us have gone through most of the same aches, pains, weakness, vomiting, acid reflux, weight loss, depression, you name it. MOst of it is from the Chemo and the body will often fight it off with the right attitude, diet and exercise and most of all family encouragement, not to be confused with sympathy.

Well Mary, I certainly don't intend to sound callous, but I feel that positive thoughts and actions injected into the situation with survival being a definite goal is an option to consider.

God Bless your family and I pray that things work out.

CharlieD

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I totally agree that this needs to be a combined decision. I just got off the phone with mom and was telling her about some of the other stories and medications that I have found on this WebSite. Mom is really feeling that she is -- if you can believe this -- burdening us!

For example, she needs to go to the airport tomorrow night to pick my brother up who is coming in from Texas. My nephew is driving her, she doesn't do well driving at night especially. Mainly she only drives near her home now. I asked her is she wanted me to stay with dad and she is worried that us kids can't be bothered everytime something comes up to go "running over there!" I was stunned that she felt that way. Basically I just said that as much as they have always done for us, this is small in comparision. She jokingly mentioned me moving in there with them. I might just see if I prod her more if she will really let me move in for a while. Deep down I know it would be difficult but I also think that it would be better if she had a shoulder to lean on during this time as well. Plus then I think I would be better capable of dealing with my issues as well while I am there rather than not seeing them everyday. I know that for them they have really been struggling at night. Dad woke up at 3am the other night because he thrashes his arms and legs, he hit himself full force in the groin area. If someone else were there with them then one person could take the night shift while another took the day shift or something of that nature. As you can see - I'm perfect for the night time as I can never sleep anyway.

They increased his morphine so that he is taking 120 mg. in the morning -- vicadin through out the day -- and another 120 mg. of morphine at night. (raised from 90 mgs in the morning and night time.) Since then mom said that she can't even leave him alone and that he is seeing things that aren't really there. She is thinking about either splitting up the medication or trying to cut him back again. He is just in so much pain that she doesn't know what else to do. Next doctor appointment is May 24th and she is going to be speaking with the doctor more that day.

I am curious if taking some of these medicines orally if there is a way that the cancer clinics allow the patients to not have to drive there everyday? As I said, that is one of the issues mom is concerned with as well. I told her that I could drive them but again I got the "don't want to be a bother" answer from her. I just wish she would realize that she doesn't need to go through all this alone.

I guess the attitudes right now are all pretty pessamistic (think I spelled that wrong) because with the past at least we could see there was something being done as he was still on chemo. Now that all chemotherapy has been abandoned it is more like a waiting game for the inevitable. I'm more of a proactive person though and I can't see this as an answer, there has to be something that can still be tried is my opinion. Anything is better than just giving up altogether.

I should be able to give my mom a lot more information within the next few days regarding what I am learning on line. Perhaps that will help her as well as being just theriputic for myself. I don't want her to be too afraid to speak up either as this is so new to all of us. I think that she was allowing my dad to make all the decisions up until now and with the pain meds, can't really do that anymore.

Thanks again Charlie. I really appreciate having others who are dealing with this awful disease to be able to turn to. I can tell that most of us right now aren't sure where to turn and I think that the more informed we are the better choices we can all make.

I'm write again soon...Until my next NightOwl moment....take care and I'm praying for all of my new LCSC friends!

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Mary,

Is it possible for you to go to your dad's next appointment? There are options for your dad that will not involve driving there daily (tarceva being one) that you can ask about. If he is hallucinating he may be over medicated as well. Make sure he is getting lots of fluids so he does not get dehydrated.

I will PM you my phone number. Feel free to call with any questions. We live not far from the Flint/Ann Arbor area. I think its great you can help your mom out.

Rochelle

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