willow
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Sounds like a fabulous trip with your wonderful and compassionate son. Thanks fur the update and I will keep him in my thoughts and prayers.
WillowMark,
What a shock indeed. You are a man of grace and dignity. Thinking of you and praying for that miracle of healing, peace, and comfort.
WillowMark,
What a shock indeed. You are a man if grace and dignity. Thinking of you and praying for that miracle of healing, peace, and comfort.
WillowI am so sorry for the devastating loss of dear, courageous Lauren. May God comfort you and your family as he holds Lauren in the palm of his hand.
Love WillowI am so sorry for what you are all going through. Continuing to hold Lauren in my prayers. Also praying for you Pam, as well as your family. This pic of Lsuren and Gio is so sweet! Thank you for posting.
Love, WillowPam ,
I continue to check a couple times a day on Lauren and all of you. Continued prayers for the MARS to help her liver heal and function on its own and for stability in there’s time with Kaurens lungs and fluid balance. Love WillowChris, I will keep checking in to see his your sister is caring Snd am very interested in what she decides to do (a clinical trial?). What did her do for say a out the platin family if drugs? My sister is treated at Stanfird and couldn’t stay on Gemcitabine/Cisplatin due to low platelets. She is now on Xelodea alone after radioembolization with y90 in Jan. stage 4 age 50, disg last July. Anyhow, we sisters can help simy by digging deep into all the potential options out there. My sister doesn’t have the energy or desire to and is afraid to come across horror stories, yet she has been swayed a few times by well meaning friends with some crazy ideas to try drugs not legal in the us or home remedies…she was even begged by a good friend not to do any chemo at all because its “poison” and only “big pharma and doctors out to make money off of you”. Thankfully, she puts most of her trust in the doctors but has not opted to get more opinions from experts across the nation. Best to you and your sister,
WillowHi Patricia,
I’m not too far…my sister has CC. I’m thrilled you were able to have the surgery and had good margins. Will you have chemo just in case for microscopic cells? Where are you being treated? My sister is at Stanford and Ive read UC San Francisco is also very good with this rare disease. Best wishes for a full recovery and good health.
WillowKris,
I really hope the trial you’re on is successful in targeting the cancer alone and not your healthy tissues. Very exciting research and promise with these types of therapies. I’m so impressed with your overall approach and attitude. (Though I know you have bad days like everyone). Take care, Kris, and keep us posted on how its going.
WillowMichele,
My heart goes out to you and your family. Just want you to know you are not alone. This is an awful nightmare for all involved and when your husband feels down or defeated, I know you do too. He may just be having a ‘down’ week and may rally for more fight very soon. It’s just a ride he wants to get off of and I don’t blame him. Like you, I am watching my sister suffer this CC and try one treatment after another while really trying to stay positive. She is currently on Xeloda and seems to be having some side effects from it that are discouraging her. We are going away for one overnight of R&R to escape everyday life. It’s especially hard with work, kids, etc. Hang in there.
WillowPam, my heart is breaking for you and your family. Know all of you are held close at heart and I will continue to pray for Lauren’s healing and comfort.
Love, WillowDear Twolf,
I agree that its time for a change at your house. For your Mom’s health and safety and for your own mental and physical health. I have been raising my girls and caring for my dad who recently passed and who had Alzheimer’s for the past 3 years. Fortunately, DaD had purchased long term care insurance which helped him get short term help in his home and then we moved him to my town to assisted living. Because assisted living is not nursing care (though they do manage medications and have dementia care). When DD had a medical problem, I’d take him initially to the dr and then they would order home health nurse visits for follow up. Eventually I got DD on hospice and he qualified mainly for the dramatic weight loss/lack of appetite. This is called “failure to thrive”. It turned out to be a huge relief to have all medical care triaged at home rather than the revolving door of ER and Dr visits. He stayed in his assisted living apartment and they brought him everything he needed, including a bed, walker, wheelchair, meds, medical supplies depends and wipes. All, even the meds a d delends were covered by Medicare, which surprised me (Dad had Kaiser but everything changes once on hospice and its a huge relief not to run to pharmacy etc).. Looking back, I wish I had sought that sooner as it really did improve his quality of life. What they DON’T provide is supervision…they just come for bathing or medical eval and tx and then leave. This is where I believe your Mom would benefit from bei g in a nursing home or hospice facility near your home. I was able to spend lots of time with my Dad simply loving him and reassuring him (as well as decision making and managing his care). I think it was good for my girls also and they were able to visit him but go on about their childhood without being completely traumatized by the situation. They visited short visits and were there for blessings near the end. There were many times I hired private caregivers (there are lots of people looking for work) in addition to the ones provided by the assisted living because Dad needed extra supervision at night as he was pulling out his catheters repeatedly so was a risk to himself. I also bought a bed alarm for night. He was ambulatory till the last week so he really needs lots of eyes on him. Trust me, you can not do it alone and may have a nervous breakdown trying. Marions is right: your Dr is a good place to start gor a referral to a social worker. In Califirnia, the Dr has to agree that a persons life expectancy is 6 months or less to qualify for hospice. Hospice reassured me that it died t mean your loved one has to stay on it, or that they won’t have good medical care. They may graduate from hospice and later use it again if needed.. Hope this helps!Thank you so very much Percy, Lisa, Pam and Marion.
I think the loss of our Dad one month, among so many things this past 9 months is bringing on her depression. Though i was Dads caregiver, she felt disconnected, being a couple hours away. it especially hurt that she (nor any of my 5 sibs) made it in time to say goodbye to Dad…it happened fast). She has tried so hard to stay positive and upbeat but can’t help feeling very very down this week. It may also be that she was recently given a poor prognosis that shocked her (“less than 2 years”), is trying to raise a child and deal with the spread of the CC. Also, we all have waves of seemingly delayed grief over nearly losing our eldest sister to a brain aneurism last Aug (…she’s doing very well now and back to work after 2 surgeries). When my sisters are struggling with such grave matters, I struggle. Its hard to be joyous and light-hearted about anything and I feel guilty for having life so good. Our emotions are all over the place! on the bright side, We’re celebrating my eldest daughter’s high school graduation and youngest daughter’s promotion to high school next week. My eldest is off to college in July and we will miss her so much! Joy and sadness!Turns out my sis really hasn’t taken Ativan regularly…only 2 pills recently, and for nausea, not anxiety (wonder if that’s another use for it?). I thought theyd give Zofran or compazine for home use as needed. Instead, the Dr thinks its the side effects from Xeloda. Side effects include the balance,. fog/poor concentration and memory, weepiness/depression and nausea plus fatigue.
