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Aug 24, 2013 - 8 comments

I've come to the realization although I will never give up hope for my mom, I have to concentrate on her quality of life as well.  Our visit with Sloan Kettering yesterday was not what I had hoped for but it doesn't have to mean its over either.  The doctor was very thorough, explaining everything from day one up until now.  She went over all the procedures and treatments she has had and agreed with her treatments given thus far.  Unfortunately, she said she wanted to be honest about their not really being a cure.  The cancer is very aggressive and now it was more about finding a treatment with little side effects so my mom can get back to her life.  She did speak of a clinical trial she maybe eligible for however, it would require her to make numerous trips and stays in the city.  Yesterday, we visited the Sloan suburban center about a half hour drive from her house in NJ.  They do not do clinical trials at this facility, its just an outpatient center.  My parents are not to fond of having to go into the city so I don't think she will go for this trial right now.  

The dr at Sloan also spoke about different oral medications instead of chemo, should this new chemo not work.  This is also the problem - because she did not respond well to the last two types of chemo, she is not hopeful for this new chemo treatment either.  This is disappointing as its hard for mom to deal with hearing this again.  However, there is a plan b in place and again, other trials that maybe available to her closer to her home.  

In the meantime, we try to live life as normal as possible.  My wish is my mom can go back to somewhat of a normal life.  I'd love this chemo to contain and slow down the process enough for her to see my sister and bil with their adoptive child, hear my boys talk, experience Disneyworld with us the first time we take them, and maybe finally take a trip to Italy to see where her father was born and lived.  I wish so much for her and my dad as well.  Next June 2014, is there 50th wedding anniversary.  I pray that God gives her long enough to celebrate that day with my dad.  The only thing I can do now is pray for a miracle.  Oddly, after our visit yesterday, my mom said to me with tears in her eyes, "I guess I better pray for a miracle because that's the only way I will survive."  It broke my heart and I couldn't even get the words or the right words out to say to her.  

Later in the evening after having some time to sort out my feelings I called her.  I told her mom, you said you needed a miracle and I am here to tell you that my boys are living proof that miracles happen.  Not only that, I said it happens for many.  I told her many of my friends here on Medhelp were told over and over they would never have a child and they got their miracles too.  My own dad told me to give it up and I told him no - never.  So I told her there's no harm in hoping for a miracle and knowing that miracles happen every day is something we can all hang on to.  

The dr at Sloan is going to work with my mom's current oncologist, assisting with her treatments, etc.  She will also find out more about the clinical trial in the city and take it from there.  In the meantime, she will continue her treatments (she has 7 more to go) and hopefully we will get some good news that the tumor has responded to this treatment.  On Thursday she has a small outpatient surgery to have a stent put in her kidney.  This will help as well.  I told her one day at a time and that's all we can do now.  

I don't know if I feel better really but I have to keep going for everyone.  My boys are a good distraction for all of us.  My sister and I had planned a surprise 50th for them but we are really not sure what to do.  I think we will put this on hold for now.  

Anyway, I want to thank you ladies as I know you are all going through ttc right now, pregnancies, loses, etc.  I know my postings are not really related to this forum anymore and at times I feel I should stop posting  now.  I want to tell you all never ever give up on your dreams.  For those of you who are ttc, I know your pain, I've been there and I understand.  I will always be here for you all.  For those of you who finally got your BFP, I'm so happy for you. Enjoy this time as much as you can.  For those of you who just gave birth, Congrats and enjoy this time as well.  It goes so fast.  

Believe in Miracles.... they really do happen! xoxo

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by Des_a_rae, Aug 24, 2013
Awww hun, I'm sorry things didn't turn out as we had ALL hoped.  You're absolutely right though...GOD is bigger than her cancer.  Miracles happen every day. Not just with people getting pregnant, look at the ones who were told to  abort because of disabilities and so forth only to go on, have faith and deliver NORMAL healthy babies.  We all have to believe and hope..if we lose all of this..we have nothing.  Just try to keep the faith my friend!!  I'm praying and will continue to pray that your mom responds well to treatments, I hate that she has to feel hopeless, but she believes in miracles so that's all that matters.  Please hug her for me..tell her we are all praying for her and PLEASE what ever you do, don't stop updating us about her, you feel and so forth.  We are all friends here..we've became friends for a reason and that doesn't stop with only's everything.  Always here for you!!  Praying for you, your family and most of all Mama Journey!!  

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by hopeitworks, Aug 26, 2013
Oh JOanne Im so sorry that Sloan wasnt exactly what you had hoped for. BUt I believe in miracles and you are so right all of us here on MH have experienced one or two!! Your mom will continue to be in my prayers and I hope you have resume life as close to the norm as possible. Enjoy what time you do have and cherish every moment. I am here for you always :)
Many Hugs

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by Shannon79, Aug 26, 2013
I'm sorry you didn't get the news you were hoping for. The ladies have said everything i would have said, so i won't repeat them. And second what des said and please keep us updated on her. Everyone here has your mom in their prayers. I hope you find some comfort in knowing that you're not alone in this journey. We're all here for you

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by renae176, Aug 26, 2013
Miracles do happen, My dad had a massive heart attack killed 2/3 of his heart he was given 6 months to live, that was 11 years ago, last august we thought we were going to lose him again he had quad by pass, and now hes doing great, My mom had breast cancer had half her breast removed and is doing great, and its my parents 50th anniversary in march, also the receptionist at my church got diagnosed with leukemia and has gone into remission twice but is now doing great.
I wish all the best to your mom, im really sorry, that you and your parents are going through this, ill keep them in my prayers but i wanted to tell you of a couple miracles of my own. Thinking about you

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by Moma_Cher, Aug 26, 2013
Oh Joanne I'm so sorry. I was hoping to read something different. Miracles do happen, and I pray you get one. Life just isn't fair sometimes and cancer is the number one example. My mom was recently diagnosed with renal cell carcinoma so my journey is just beginning. I'm so sorry you all have to deal with the absolute callousness of the disease. Just heartbreaking to imagine your mom saying those words to you...

I think you're right about quality of life and one day at a time approach. I know for us the diagnosis was so devastating and we have gone through so much pain and anguish from the unknown alone. My prayers are with you and your entire family.

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by journey2motherhood, Aug 28, 2013
Thank you so much ladies, I'm really touched by all of your responses.  I'm trying hard to believe a miracle could happen so I have something to hang on it.  It's been a rough couple of days for me.  I'm just having a hard time with everything.  Thank you for all being here for me, I'm truly grateful for the friendships I've made here on Medhelp.  It's nice to know I have you ladies to turn to.  xoxo

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by globetrot, Aug 28, 2013
I am trying new contacts and so I can not read this very well- but I will say- my niece with Leukemia was part of a trial and she is in remission- so was my Mom for Ovarian cancer- in fact, one time my Mother met someone who was on the drug my Mom did a trial for and the woman thanked her.  Some great things happen with trials!  I am praying and praying.  I believe in miracles- I have seen them!  Hang in there.

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by journey2motherhood, Aug 28, 2013
Thanks Lisa.  I'm happy to hear you had great outcomes with your family and their clinical trials.  Unfortunately, my mom does not qualify for the one at Sloan.  It seems because she is a diabetic and has issues with her kidneys, she is not able to do the trial.  They did say there would be other trials but she could run into the same issues.  She's upset I can tell and I feel just awful.  I had a whole breakdown last night and I'm not sure how to handle anything anymore.

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