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Posted on: Dec 24, 2017 03:16AM - edited Dec 24, 2017 12:00PM by zarovka
I wanted to start a thread for MomAllTheTime and Dani because I know so many people are thinking of them as they get through this rough patch.
May this thread bring you endless waves of prayers and strength ...
Posts 1 - 30 (370 total)
Dec 24, 2017 06:57AM Lynnwood1960 wrote:
I have been checking every day looking for an update. Prayers for them , they have been through a rough patch lately. Sending hugs and strength.
Dec 24, 2017 09:32AM 50sgirl wrote:
Mom, Thinking about you, worrying about you. I am lifting you and Dani up in prayer. We all surround you with our love and support.
Hugs and prayers from, Lynne
Dec 24, 2017 02:06PM ABeautifulSunset wrote:
There is a post from Mom on Litas thread, from about 17 hours ago.
Dec 25, 2017 06:31AM Fraidycat1954 wrote:
I am so grateful for your posts momallthetime. You are a bear cat. I pray they find a solution for Dani.
Dec 25, 2017 08:57AM - edited Dec 25, 2017 08:57AM by zarovka
This is the last post from MomATT... 17 hours ago on Lita's thread ... not much and not awesome.
"I'm gonna write up an update about Dani on the liver mets, so you will know. .... Dani is been having the bleeds from the bladder is just horrendous." -MomATT
Prayers MomATT. Prayers Dani.
Dec 25, 2017 09:07AM zarovka wrote:
And here's an update from MomATT the liver mets thread ...
How do I make this short. The week after the most horrible experience of being ignored at the Hospital, was a difficult week. Dani had rads that week so the trips there and the weakness from going through what she went through and then having Y90 at the end of the week, then more rads was just monumental. All that week I was hoping to speak to chief URO so we could see another Uro, anyway he granted my hubby and I a visit on that Friday afternoon.
We were ushered in to what was a consult room with that chair for examination etc... not an office. In that room in came the nurse, the resident that treated Dani at the hospital, a social worker, and someone else i don't remember and of course the chief. He is well known as good in his field. The first thing he tells us, is - do you know what your daughter wishes are? does she have a living will? do you understand how sick she is? did a/o tell you? (Bluebird almost word p/word of what was told to you). We were flabbergasted. He said i don't understand these docs, they treat the liver, separately every part of the person, they should look at the picture and sometimes you don't treat. He will discuss it with Onco. Maybe it would be a good idea to speak with an ethicist? A chaplain? I told him, but she's doing her chores, she functions, she is not running around, but how do we just give up on someone that is doing everyday stuff, i said she's just 30 something, u guys brace yourself! He says we just lost a 5yr old. Kid you not. If i didn't have a heart attack then...He said we have ppl doing irrigation 6 weeks. Irrigation would mean a cathether in the uretra, and water coming in and blood going out, very uncomfortable, because obviously there is clotting involved then they would have to flush, don't ask. I said 6 weeks? But hse has children, that's her life, that would not be living, he smiled, some ppl go from this and that some ppl from bleeding. We were speechless, i knew these people were garbage, and there is not talking to them. When we left the room a saw a policeman waiting in the lobby, no one was there anymore friday afternoon, and he accompanied us and the social worker to the elevator. I asked her in the elevator, is he here for us? and she said oh no they roam the elevators. And they smiled to each other and he left on the 2nd floor. They thought we are gonna be violent becausee i had said i wanted to complain. Do you believe that? That's at Columbia Presbyterian in NY.
We were very broken and shaken, by the Grace of God i thought of one Onco i know, that is very old fashioned, not the fanciest person in town, but i knew that he would fight for her. And after 2 weeks of going back and forth and paperwork, he is trying to come up with something to help her. She did use a URO he recommended because the bleeding is still there. On and off. Like a hanging noose. They did vessel embolization, not an easy procedure. It helped somewhat, but any day any time, she will call me she just passed clots, mind you that's from the urethra.you could imagine what she's going through, she has to drink all the time, so sleeping is not really getting done, she's constantly scared there will be huge clots again, and then she won't be able to pass. URO is still trying to figure out what to do. It's been difficult. She is off tx. Neratinib proved to be a cause of major nose bleeding, and mouth sores and a rash.
I've pretty much became paralyzed, i barely go out, i did not touch the computer till today. Z you were right. I started on Celexa. It helped a bit. Every minute i wait for her call. My hubby kinda broke, he looks lost. It's hard for me not to be able to discuss it with someone that knows her well. So this pressure gets even harder. I am really alone. The sibs know and they help with the kids etc, but i can't tell them of all my fears and every minute i know she's bleeding, they have to work and mingle, it's hard to do that if you are constantly in a crisis mode. Of course the bleeding gets worse at night. The sheer panic of hearing the phone ring Platelets are down to 43. She cannot plan even a doctor's appointment for her dd, she had to cancel twice. I don't know where this is going. She lost so much weight, she tries to eat, but this stress i honestly don't know how she could take it. I do wish and hope for a better tomorrow for all.
Dec 25, 2017 09:13AM - edited Dec 25, 2017 09:15AM by zarovka
Dec 25, 2017 09:14AM - edited Dec 25, 2017 10:15AM by zarovka
Dec 25, 2017 09:33AM Bigbhome wrote:
Mom, there are no words to make it better. Dh and I cried when we read your post. We are praying for you, your family and most of all, for Dani. We are holding you close in our hearts, thoughts and prayers! Just know that we are always here for you. Gentle hugs,
Dec 25, 2017 10:32AM babs6287 wrote:
Momall. You always amaze me. You are the lioness who ferociously is caring for and protecting her cub. Your strength has no boundaries! Please know that we are all rioting for Dani
Dec 25, 2017 05:32PM MJHJAN1014 wrote:
Mom, my father in law had a quadruple heart bypass in his early 80's. The procedure went great, but it was apparent pretty quickly that he wasn't recovering well. He ended up with an infection, his kidneys shut down, he was on dialysis and on and on. This went on for weeks.
The day came when the MD, Social worker, nurses etc, called for "the meeting" with the family. In their eyes they felt that my father in law would not survive. I know they meant well, and the family did agree to no chest compression should his heart stop(could break ribs).
I can tell you, my DH and brother came out of that meeting armed and dangerous. They kept saying to one another "they just don't know Dad and how strong a man he is....we are not giving up. Low and behold, he did make it through. He was in some dismal rehabs, but my brother in law made sure he was getting what he needed and encouraged him always. A year later he came home, DH and I went canoeing and trout fishing with him that spring!
He is now 96 and we wished each other Merry Christmas on the phone this morning. So yeah, the professionals need to do what they think is appropriate, but they really don't know Dani's heart and soul. Love to you, MJH
Dec 25, 2017 06:07PM JFL wrote:
Mom, thinking of you and Dani. Just ignore those doctors. I am sure they would not be so dismissive if it were their wife, daughter, etc. Dani is so young and strong, her body is capable of bouncing back in ways unimaginable. And, as you well know, the will to live for one’s children can defy logic. I know Dani has that fire in her belly to be here for her little beauties. I am amazed to hear how she is such a trooper, doing all that she does for her family. Praying for a Christmas miracle today and for some peace and pain relief too.
Dec 25, 2017 09:15PM Bluebird-DE wrote:
Momall, I and so many watch for your posts and updates. This is more of a guarantee to find them and not miss them in the flurry a thread can take on. Please keep us updated and ask for help, some have answers sometimes. I will watch for you on all threads.
Dec 25, 2017 09:16PM momallthetime wrote:
Zar thank you so much for making things easier and starting this thread. The truth is i wanted to post in a few other threads with wonderful people tht we have shared so much, but i just literally don't have the energy. I'll let them know.
To all of you special diamonds, thank you so much for your love and support. Yes, i do try to be the mama bear. The hardest part to be honest, is to seem normal, brave, strong and confident to her sibs and to her and her hubby. They gage my mood and that's how they move on, so i feel great responsibility. And it's hard to do when your heart is beating like in a stampede.
Right now i'm very upset at myself, whenever i back down, i regret it. Her platelets were very low as you know, she's been loosing blood with enormous clots we have a CBC stat prescription,also due to rads, but she did not wanna travel 45 mins to a lab that would do the work this weekend, so i caved in. And now i hear tonight is more of the same, blood and clots again, and we spoke to URO and he might wanna bring her in for another round of embolization tomorrow (she doesn't want to), but either way we should have known by now her blood levels count, now if she gets to stay home through the night, we will only know in the evening if she needs transfusion, and then if she does needs blood it gets so complicated. I thought i'd be sophisticated and give her the room to not get the test done, she fights me sometimes, sometimes i give in sometimes i don't. It's so tough she needs it to be someone else that made her do it. Onco also told me today if she feels she needs to rest at home let her stay.
She wants them to come up with a solution. I am afraid they don't have one. I can't tell her that. This embolization of vessels is her best shot. As she says: this is so distracting.
If she gets to stay home and her blood levels stabilize, Onco is planning on low dosage Adriamycin, cytoxan or something similar and something else. i'll be honest, of course IV chemo is scary, but i think she needs this as opposed to maybes etc...at this time. It's a weekly infusion, so it really makes her upset. But can we afford to argue at this point? He has a lot of experience but is old fashioned, but he cares so...
I must be honest and tell you, i think this business with clinical trials was the big nose dive for her. In those trials she did not get the care she really needed. As scans or radiation when needed. The first trial, no rads or scans..The 2nd trial as MSKCC the scan showed progression, yes a bit of stable, but most it was not good, and they said oh no, just let's do it another few weeks. she knew it was not doing a/t. I don't trust any of them.
MJH re: your dad, it's so true. The same happened to my father, but he was really sick, fought a good fight, stroke etc...at the end we did want the doctor to be honest with us, but he was physically totally incapacitated, his mind i believe was good till the last breath, but we saw what was happening to his body, we actually told mom to stop praying he should get better. And the doc which usually was quite aloof was actually quite Humane about it.(he was in his late 80's, mom then said, he was too young, and yes he was). And i know you mean well, and yes at times there is a place for that conversation, but this doc actually thought it was crazy she was getting Y90 to the liver, radiation to the bones etc...with the amount of "things" she has. So... NOW don't get me started on these animals, we went there a) to ask his advice in what could be done in her situation, b) uro that was assigned to us by bad luck at the ER was not responsive (this chief knew we were coming to ask if we could have himself as her doc), c) it was not in his place as someone that never even saw her to tell us of such predilection, it would have been her Onco. And when i told Onco that she was leaving his practice because the institution gave up on her, telling him what was told to us, he was speechless.
Prayers for a peaceful night! Always hoping tomorrow will be better.
Dec 26, 2017 03:44AM zarovka wrote:
MomATT I am always hoping and praying things will be better for you and your family, whatever that may look like.
I met with a new onc last week. He asked why I would go to Japan for immunotherapy when there are trials available in the US. I told him that I went because I can get immunotherapy in a clinical setting (where my health is the priority) rather than a trial setting (where the trial protocol is the priority). The issue really much bigger than that because the treatments and combination of treatments I am getting is not available in the US inside or outside a trial, but generally you will be better off getting a treatment outside of a trial if you can arrange it. Some trial protocols are combinations of FDA approved that can be prescribed off label outside of a trial. That is a string to pull.
None-the-less trials can be the least bad option. It is important to examine the trial protocols and see if they align more or less with what you need.
Thank you for stopping by. We all so concerned about you, about Dani, about her family. It's nice to hear you talk about the weight on your shoulders. It's been obvious to us for a long long time how much you carry for Dani and her family. I would not think twice about doing the same for my daughter, so I understand that too.
Dec 26, 2017 07:25AM 50sgirl wrote:
Mom, You should never question yourself or the decisions you make for Dani. It is all too easy for us to look back and say, "Maybe I should have". The fact is, we will never know what MIGHT have happened IF ONLY we had done something differently. You have done everything right, using the knowledge that you gain, the instincts you can trust, and the love you hold for Dani. I don't think you were wrong to give in and let Dani stay home. Do not beat yourself up for backing down. Sometimes it is best to give in once in a while for Dani's own peace of mind. It is unfortunate that the clinical trials put their own priorities before their patients' needs. The trial directors would like us to believe that the frequent appointments and tests are for the benefit of the patients. I cannot end my post before telling you (again) that I am worried about you. You are under a tremendous amount of stress and are putting so much pressure on yourself. It is impossible to be all things to all people - Dani, her siblings, your grandchildren, your DH. You cannot always be the strong one without suffering consequences, emotionally and physically. Please take care of yourself. You and Dani are in my prayers.
Hugs and prayers from, Lynne
Dec 26, 2017 09:36AM momallthetime wrote:
Lynne as usual you wrote so beautiful. And you guys really totally get it. I really don't want this to turn about me, but it scares me a bit that i should really be strong and not loose it, seriously. I wish i could have a choice and not have to be THE ONE, but they do set their strength by how i deal with issues.Maybe it's not fair, but that's one of the drawbacks of being very close. The sibs entertain D on their chat all day, to get her mind off things a little and they are there in the middle of the night which happened a few times so i could go with her to the ER, so...it affects them very much so if don't wanna get a discount at the cukoo's nest, i gotta come through.
The real issue is the fear, we don't know what we are dealing with, My body turns cold when she calls me, it's a terrible feeling. Wildplaces very kindly pm' some ideas i'll ask the doc. It's incredible that the docs don't have a clear answer or even know what it is. Let's see what the CBC showed today. It's psychologically damaging to her. It's a delicate organ, the bladder, full of vessels. So 2 things: it's bleeding in there, that's one issue and the and then it forms clots that blocks her urine. Neither is good. But the fear of the clotting is the issue. If one could just bleed she would put up with it. But now if the Platelets are low it will the 4th time in 4 weeks she gets trasfusion. Not good.
Zar how do you do it, that's the question. Japan it is. I love how you control THEM and not the other way around. Btw D has also had fevers 102/101 for the last few weeks this Onco does not think it's tumor related, but he doesn't know yet what it could be. Interestingly her WBC are low if a/t. Another puzzle??
Thank you all for the good wishes.
Dec 26, 2017 10:19AM - edited Dec 26, 2017 10:19AM by zarovka
MomATT - I want to second Lynne and say never look back, never second guess yourself. The problem with calling the shots on my treatment is I have no one else to blame. So I just do my best and I don't look back. You do an amazing job.
Dec 27, 2017 12:34AM - edited Dec 27, 2017 12:53AM by ShetlandPony
Momall, I hope you get a nice oncologist on board so you have someone who really cares about Dani and her family. Someone you can trust will not just give up but provide wise guidance. Be kind to yourself; you are one human being doing the best she can.
Dec 27, 2017 12:58AM Zillsnot4me wrote:
Mom. You are THE mom and only want the best. You strive everyday for the best for your daughter. Do not second guess yourself. That is just the fatigue and fear.
You and Dani are in my thoughts and prayers.
Dec 27, 2017 09:13AM - edited Dec 27, 2017 09:20AM by MJHJAN1014
Mom- After reading your post, I understand more clearly why the encounter with the potential URO left you feeling furious, betrayed, and stunned. It must have felt awful. Joining others in being concerned about the incredible amount of stress you are under. You are a pillar of strength. Sincerely, MJH
Dec 27, 2017 11:44AM dlb823 wrote:
MomATT, I just want to let you know that I am also following this page that Z so thoughtfully set up. From your posts, it sounds like Dani is very much trying to keep up a somewhat normal activity level, and I can't help but wonder if that's possibly contributing to the bleeding. Would getting her off her feet, as difficult as that might be to encourage, not possibly help with the bleeding?
I know I don't have to tell you I'm praying for Dani and for you and your family. You and Dani continue to amaze me! Praying things calm down and the new/old onc's approach will prove to be a winning choice right now to turn things around. Deanna
Dec 27, 2017 12:13PM rpoole1962 wrote:
MomAtt, I too am following this thread (thank Z) and keep Dani, you, and your family in my daily prayers. You both amaze me beyond measure. When I feel the self pity ease in and think...I just can't do this.....I think of the Amazing Dani and how well her body handles all to this crap. She does have the young factor working in her favor. Praying a solution is right around the corner.
Much love from Alabama!
Dec 27, 2017 12:22PM jensgotthis wrote:
I'm following, praying, hoping, and loving you and Dani. Thanks, Z, for setting up this page.
Dec 27, 2017 09:26PM Kandy wrote:
Momallthetime, I have followed you on the liver met thread. Thanks Z, for setting this one up. I had the same talk from my oncologist last month. I was shocked. I still drive, take care of my child with Downs, fix dinner, do minor chores. I certainly did not feel like it was time for that talk. I feel like as long as I am having good quality time with my family, there is no way I'm throwing in the towel. My Dad passed away a couple years ago, not from cancer but hospice was called in. I felt then like that they thought they were saving him from pain and misery. I felt like my oncologist was doing the same thing. I just don't see myself that far yet. You hang in there, I pray treatment helps soon
Dec 28, 2017 09:01AM Iwrite wrote:
MomATT- No one understands or knows Dani like you do! I'm hoping the new doc listens and provides the advice and care Dani needs to keep her QOL and family together. You carry a heavy load because of your love for her. Do take care of yourself! I'm praying you and DH can help each other,especially now that he knows more about the doctor challenges you've been facing. Sending hugs to you.((()))
Thank you z for setting this up!
Dec 29, 2017 09:06PM josgirl wrote:
I just want to say I think of you and Dani a lot as I am also a mom with a young kid and my heart breaks for all of you. I hope this is a crappy wrinkle in the road and shortly you can go to that doctor and say you never treated my daughter go &$)( it. And I understand about being the strong one and what energy that requires. I think of you often and pray for you and dani