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MY DAUGHTER HAS RELAPSED---PROGNOSIS POOR

nempark
Posts: 580
Joined: Apr 2010

Hi Guys I haven't been posting on a regular basis but I have been reading. I owe an apology to Debrajo and Jazzy for not responding to their private messages. My daughter was dx last november with Acute Lymphoblastic Leukemia and was on a roller coaster out of this world treatment. Ended up in ICU with infection and fever that was not going. Treatments continue and hospital and hospital and fevers and fevers.
Anyway, as of this week the Doctor did a bone marrow biopsy and told us that the cancer cells has returned full force. Her blood counts are dangerously low and as now all the residents and social workers literally told us that this is it and in so few words that my daughter is dying. Her primary onc told us that there are options and that there is no guarantee even after having more chemo (clorfarabine)the cancer is going to come back and it is best that she remain stabled and comfortable. My daughter has decided to continue with the Chemo and I am really hoping that she pulls through this. She said to me if she dosen't do the chemo what will she do just go home and wait to die? So this I where we are. It is not an easy journey watching you 40 year old daughter so sick, I was indicating to her not to take the chemo but she wants to go for it. Please let me know what your thoughts are. Even though the Docs are telling her that there is not much hope, she keeps insisting that she is not dying. Love to all and good health.

cheerful
Posts: 114
Joined: Apr 2011

Hi Nempark:

I would like to give you some advice regarding your daughter. I think your daughter should go for the chemo especially if she wants to. Although like you said, there are no guarantees, but if she feels it will help her then by all means she should go for it. Chemo does kill cancer cells. I will pray for your daughter. She is so young.

I did notice your profile and that you were diagnosed with Stage 1 of UPSC. I also was diagnosed with Stage 1 of UPSC in early February 2011. I finished all of my 6 cancer treatments consisting of carboplatin and taxol in late August of 2011 and the radiation in mid October of 2011. My latest cat scan as of Nov. 8 (yesterday) shows NO evidence of disease for which I am very happy about. I have had 2 cat scans done at 6 month intervals for this year. Last year, I had 3 cat scans. Anyway, I am feeling much better and stronger now since it now a little over a year since treatments. I have changed my diet and eating habits for the better.

Anyway, please keep us ladies posted here on the UPSC site regarding your daughter.

Warmest Regards,
Cheerful

nempark
Posts: 580
Joined: Apr 2010

Thank you so much for your response. Yes, she has decided to go for the additional chemo. She will get it 10 days from now because it is not on the market as of yet, but the Doc says he can get it from the manufacturers and he can use it as a trial. I will keep you guys posted. Good health to all. Congrats on being NED. Its three years for me.

ConnieSW's picture
ConnieSW
Posts: 539
Joined: Jun 2012

Nempark, I wish you strength as you support your daughter.

Connie

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Don't apologise to me!...I'm just glad to see you post! I am so sorry about your daughter, but I think she is right and is a fighter,like her Mama! I don't think I could go home and wait either. Sometimes it is at it's worst right before it gets a lot better! I will pray that this is the case and that she will not only pull through, but will have a cure! She is a strong,young woman, that wants to fight...help her to do this her way! Love, Debrajo

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

I am very sorry about your daughter and your family. My 32-year-young sister is facing the same situation so I know how painful/difficult this is. Last week, my sister's doctor decided to stop her chemo treatment as the cancer keeps progressing with full speed. My sister is also a fighter so her doctor encouraged us to seek for any clinical trial she might still be able to participate. I am not a health professional so I don't know if clinical trial will be the best option for your daughter but still want to share our experience with you. Maybe you can check with her primary doctor. Good luck and I will keep her in my prayer.

By the way, would you mind sharing your daughter's new Chemo regimen with me? If possible I would like to pass the information to my sister's doctor and see if he thinks it's worth for my sister to try. Thank you!

nempark
Posts: 580
Joined: Apr 2010

It is so nice to get replys. Thank you so much every one. When I was dx, I felt terrible and cried and cried, but this is different, this is watching my child sick day in and day out for one year. Our only hope is our Great Creator.
Crystalblue,these are the three chemos that the doctor recommended. clofarabine,liposomal vincristine,nelarabine (spelling)He ordered the Clofarabine but unfortunately she has to remain in hospital for this drug, but the insurance does not cover the hospital stay and Doc says there is no way he can do this without her being hospitalized, so he changed to liposomal vincristine. She will be having this for five days, continuously. But both Docs forwarned us that this is not an easy fix and may be just be for a short time because in most cases, the disease returns. How comforting!!!!! Love to all.

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Let's keep the good spirit and put our faith in God. Please take a good care of yourself too.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am so sorry to hear the news about your daughter. I hope the chemo works for her. She is so very young. Prayers for you guys.

sunflash's picture
sunflash
Posts: 144
Joined: Aug 2011

Also sending my prayers with the others. I know this must be the most difficult thing you've ever experienced, watching your child go through this.
Prayer works, and you've got mine.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I feel so bad for you and especially your daughter who must endure the treatments...darn it!

Have a therapist (used to work in hospice and other areas in med. field) I've seen during my cancer journey and now we're very good friends, therefore, I ask her loads of questions on disease and life. As a few of our group members with cancer are having a tough time with recurrences I've learned a few things I'll pass along...might be of help, I don't know.

Docs aren't always correct on prognosis for a patients. Many docs tend to bring to light what they think is a downfall for patient, therefore, throw out the "last ditch effort" with chemo and/or any treatment plan. Many times these suggestions will bring no help, just pull down a patient's immune system, offering a much sooner death. On other side, if person doesn't do the treatments, statistics show they "generally" live longer and if on hospice the pain level is better monitored. Almost like one is throwing up a coin and going with the option of it being HEADS OR TAILS....treatments or not!!

Do understand each person comes to the equation with different specifics -- type/stage of cancer, prior health issues, age, etc. An example is my daughters good friend's father was diagnosed in late July with terminal brain cancer...doc told the family he had 8 - 15 months to live and suggested to get him more on the 15 month side, highly suggested treatments -- chemo, brain radiation and then start a "clinical trial". Well he finished the chemo and radiation and just got a few days into the clinical trial and bingo he just got worse...docs stopped any more treatments. Poor man went downhill very fast and 2 weeks later he passed. He didn't even make what docs suggested, 8 months -- made 3 months. Now the family is going back to thoughts of -- what would have happened if we didn't follow the docs guidance and simply did NO TREATMENTS????? Who knows...only the man upstairs truly knows our path in life.

It's your daughter's life and realize she's 40 yrs and all you can do is guide her. Be there for her and pray for her to get thru this and come out better after treatments.

Prayers are with you and your family.....

Hugs,
Jan

Double Whammy's picture
Double Whammy
Posts: 2264
Joined: Jun 2010

I know far too many people who have lost children and it has to be the worst loss anyone can experience. I wish I had a crystal ball and could know what would work for your daughter. I hope she has accurate information and understands all the pros and cons of continued chemotherapy for her and her future. What a terrifying position for anyone to be in. Alas, we all know it too well either for ourselves or a loved one.

I'll send prayers for you and your family that the best decisions are made and that the outcome is one that provides you reassurance that those decisions were valid.

Hugs,
Suzanne

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

My heart aches for you, your daughter and family. This is not the way things should be.

I think your daughter is lucky to have you as her mom - to be there for her and to know what having a deadly cancer is like. Each day we never know what will happen to us. My doc always reminds me of that when I get down - today we could die in car accident.

I think your daughter needs to be the one to call the shots with input from her medical team and family. She still has hope and is up to the fight. She will know when it's time to stop, I think. If clinical trial is available, maybe this is time. If her chemo manufacturer is considering this a trial - maybe they would pay for the hospital stay (a thought).

Don't forget hospice. My husband is a hospice social worker and some hospice programs allow patients to get chemo and other life saving measures while still getting hospice palliative care. It will depend on what's available in your community. They offer such a wide variety of services for the family and may help all of you cope better.

I can't even imagine the pain this is causing you. My prayers are with you all.

God bless and keep us posted. We are here for all of you.

Mary Ann

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

So sorry to hear that your daughter is not improving. All of this has to be very difficult for all of you. Glad you are supporting your daughters decision to proceed with chemo. Glad she is still fighting. You and your family will remain in my prayers. Glad you are still NED. You have enough to deal with. In peace and caring.

Teamkelly
Posts: 50
Joined: Sep 2012

Dear heavenly Father, we reach up to you with out stretched arms and ask for healing. Lord God you knew this child in her mother's womb, you saw this cancer before she was born, Lord we cry out to you and ask for a miracle, we ask that even now the cancer will start to leave her body, we pray for your healing unction to pour over Nempark's daughter, Lord comfort her, comfort her Mom, from the top,of her head to the bottom of her feet I claim healing for her. Lord we give you all the glory and know that only thru you is this possible, we come bravely to your throne and ask for healing. In Jesus name.
Amen

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

AMEN and AMEN!!! As a mother who has lost an infant son,there is no way to make this lose go away...so, In The Name of Jesus we rebuke this evil cancer and pray for complete healing and give God ALL the Glory! Debrajo

nempark
Posts: 580
Joined: Apr 2010

Thank you all so very much. Wow what support!!!How comforting. Thank you.

HellieC
Posts: 425
Joined: Nov 2010

I've been away for a short break and only just seen this news. I am so, so sorry. I can't really add any more to the thoughtful words and prayers already written. God bless you and your daughter. You are in my prayers.
Helen

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

So sorry to hear,
May her strength of purpose get her past her mere mortal Docs!
May God be with her against her enemies!

Sara Zipora

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Still praying for your daughter and you! Please take care of yourself. your daughter will need you as she gets well! In Prayer, Best Debrajo

Teamkelly
Posts: 50
Joined: Sep 2012

Nempark, continuing to pray for your daughter and for your strength.

Nicki

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