Update on my niece

nikkers
nikkers Member Posts: 25
in Colorectal Cancer #1
I heard from my brother today through his conversation with my husband, and the news is not good. Claire is still in hospital on morphine drip and pain killers on top of that, but she wants to go home - which I can well imagine.
She had a lot of trouble with her CT scan, threw up the liquid and they had a terrible time getting the liquid (is it barium?) into her system so they could check what's happening. Today the results - not good. Since the last CT scan less than a month ago, she has met to her lungs and diaphragm (already knew it was liver and perinea - all female organs removed last year). It seems to be spreading fast - they are putting her back on chemo next Thursday (I don't know why they are waiting so long maybe because she is so very, very tired and weak). She has perhaps just a year left if she's lucky. I have sobbed my heart out today, but must get strong for my talk with my brother tomorrow. I ache for her and her little boy who knows his mother is sick - how could he not. Just two years old. She is so stoic and was so determined to live to see him reach 18, she thought she would be able to just WILL it to happen. I know people here will understand.

Craig I will see if my brother knows anything about the genetic markers you mentioned in our last conversation, but I doubt he would have asked.

I'm planning to go over to England in April to spend time with her and keep chronicling her times with her son, and perhaps she will like to make video talks for his future too. Its all so unbelievable.

Thanks for listening

Comments

  • lauragb
    lauragb Member Posts: 370 Member
    #2
    I am so sorry to read that
    I am so sorry to read that things are so difficult for your niece and all of your family I will pray that the chemo will slow down this growth and she can have some quality time. It just isn't fair.

    Sending you light.
    Laura
  • thingy45
    thingy45 Member Posts: 632 Member
    #3
    lauragb said:

    I am so sorry to read that
    I am so sorry to read that things are so difficult for your niece and all of your family I will pray that the chemo will slow down this growth and she can have some quality time. It just isn't fair.

    Sending you light.
    Laura

    so sorry
    So sorry to read about your niece. So young stil and a 2 year old.
    To chronicle her time still here is awesome, for her young son for later
    Lets hope for a miracle, she is still so needed.
    Your brother will need you now also.
    I will keep your family in my prayers
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #4
    So sorry
    That's such sad news. I think the idea of video talks is very good. That would be something for everyone to cherish, but especially her son.

    I'll keep your family in my prayers.

    *hugs*
    Gail
  • nikkers
    nikkers Member Posts: 25
    #5
    tootsie1 said:

    So sorry
    That's such sad news. I think the idea of video talks is very good. That would be something for everyone to cherish, but especially her son.

    I'll keep your family in my prayers.

    *hugs*
    Gail

    Thank you so much Laura,
    Thank you so much Laura, Thingy and Gail for your kind thoughts. I spoke with my brother this morning and offered to come over in April and he is going to check with Claire (of course) and then I'll make arrangements to go. She wasn't allowed to return home from the hospital today so will remain on the morphine drip and meds through the weekend and will be reevaluated as far as going home on Monday.
    My brother just took her on holiday to Mallorca for a week and was devastated that she was so, so tired and needed a wheelchair to take her back to the plane, but little Kai had a wonderful time and seeing his smile and joy at everything they did made the trip worth the effort for her (plus seeing the sun again, which doesn't appear so much in England!)
    Today was long hours on the phone. My cousin also called as she had had the chance to talk and see Claire since her return from Mallorca, she was so very very weak before her admittance to the hospital that she's afraid she will not be able to celebrate her birthday on June 26th, may not even be here by then. I hope, hope she's not right and that Claire can be here not only for her birthday, but Kai's in October and then how about wishing another Christmas for her? My brother thinks Claire is in denial, but my cousin thinks she is very, very well aware of what is happening now and is looking for the positive. Claire really is the loveliest person and has done a fabulous job as a mother for little Kai, he knows his mummy is sick but she has remained upbeat and strong for him, I'm sure cherishing the normal, and he seems happy and fearless.
    I will be glad when she gets home so that I can Skype her, put a big smile on my face and reflect back whatever I feel she needs from me.
    This is such a tough, tough and totally unbelievable thing to be going through.
    Thanks again for your support and listening to me ramble here sleepless at 1:30!
    Nikky
  • geotina
    geotina Member Posts: 2,111 Member
    #6
    I'm sorry:
    I realize your niece wants to come home but perhaps the hospital is the best place right now, she can get the required rest, medications and nutrition that is so very importing to keep her fighting spirit up . Hopefully they can get a very clear picture of exactly what they are facing and can then make informed decisions about the future.

    I'm sorry you and your family are going thru this and yes, it just isn't fair.

    Hugs - Tina
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #7
    Nikky!
    Hi there!

    I've been having my hands full as you read in the other post (thanks for responding btw):)

    I wanted you to also see if she has been KRAS tested, if she has not already. The results of this test would be that Claire would be:

    1. KRAS Wild - which means she would be able to receive Erbitux or Vecitibix.

    2. KRAS Mutant - which means that these drugs do not help and the toxicity with no results
    would be more harmful than good.

    So, please check this out...if Claire is 'wild', it just means that she has some more choices that would battle the cancer and help extend her survival if she showed good response to either of those.

    These came to my mind this w/end and I wanted you to have this information available to check on.

    Take care and don't put a stamp on it and mail it in just yet:)

    Bring some more info from all of this and we'll look at it again, continued best wishes.

    -Craig
  • tommycat
    tommycat Member Posts: 790 Member
    #8
    geotina said:

    I'm sorry:
    I realize your niece wants to come home but perhaps the hospital is the best place right now, she can get the required rest, medications and nutrition that is so very importing to keep her fighting spirit up . Hopefully they can get a very clear picture of exactly what they are facing and can then make informed decisions about the future.

    I'm sorry you and your family are going thru this and yes, it just isn't fair.

    Hugs - Tina

    I agree with Tina
    The hospital might be in her best interest for now. I know they can be dreary, so maybe the doctor would okay for her to be wheeled outside from time to time so she could smell the fresh air?
    I too have young children and they were/are a reservoir of joy and strength for me. Sounds like Kai is for Claire too.
    Truly hope things turn around for her~
    PS: One of my daughter's names is Claire....love that the root means clarity and light.
  • nikkers
    nikkers Member Posts: 25
    #9
    Sundanceh said:

    Nikky!
    Hi there!

    I've been having my hands full as you read in the other post (thanks for responding btw):)

    I wanted you to also see if she has been KRAS tested, if she has not already. The results of this test would be that Claire would be:

    1. KRAS Wild - which means she would be able to receive Erbitux or Vecitibix.

    2. KRAS Mutant - which means that these drugs do not help and the toxicity with no results
    would be more harmful than good.

    So, please check this out...if Claire is 'wild', it just means that she has some more choices that would battle the cancer and help extend her survival if she showed good response to either of those.

    These came to my mind this w/end and I wanted you to have this information available to check on.

    Take care and don't put a stamp on it and mail it in just yet:)

    Bring some more info from all of this and we'll look at it again, continued best wishes.

    -Craig

    Thank you Tina, Tommycat and
    Thank you Tina, Tommycat and Craig for your support, queries and advise. I haven't been to the site for a few days as I have bronchitis and laryngitis - I realize that this is probably something to do with stress and worry, but I'm making my way out of it. Every day my voice is different.... my husband teases that I'm a different woman every day (today its more of a husky woman voice rather than a cracked baritone!)

    My brother called this morning with the good news that Claire has been discharged. They started the new chemo yesterday and kept her there for the day and night to work on the "balance of chemicals" and to manage her nausea - she is totally off morphine. The bad news is that they saw the oncologist and unfortunately there is also a "mass" on her diaphragm along with the lungs, peritoneum, & liver we already knew about. My brother doesn't know if its a large or small mass on the diaphragm, what chemo she is taking, the prognosis or anything technically medical so still not the foggiest on the genetic stuff you asked Craig earlier, or about the KRAS wild or mutant in your latest.

    The good news is that she's feeling better and I can stop the hyper worry I was feeling. I've decided to compartmentalize the sorrow in a corner of my brain and get on with life and let laughter come back into it. The other part is that I am going back on April 26th for a Family Reunion in the local Village Hall in the village where our ancestors are from. My brother had already arranged everything before this big setback, ostensibly for my husband and I coming over, but really because he feels it might be the last time we can all gather together before it might become too hard for Claire to be with such a big, boisterous bunch of people. I'm then going to send he and his wife off on a walking holiday and will take care of Claire for a week and do the recording for Kai with Claire that I had planned. I am just so happy I don't need to rush off before then in order to be with her. I'll see if I can't get some information at that time about the things that Craig asked.

    The news is bad, but she is still here and we and she can enjoy life.

    Thank you all, so, so much for taking the time to write with your support and sympathy. I send my best wishes back to all of you. Its kind of shocking to read through the entries and see how many young mothers are also blighted with this monster. I so hope Tommycat, that you will be in full recovery soon, till then I know you will continue to enjoy, love, hug, and kiss your children often and that that will sustain you through thick and thin.

    Nikky

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