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Nayeli's avatar

What do you do as a parent when all hope is lost?

Asked by Nayeli (34points) March 14th, 2011

I’m hoping someone out there who has lost a child can help me out with this… but if you have any advice, I really need it.

My son was born with a type of kidney cancer called Wilm’s Tumor. It was in an early stage, so he had his kidney removed and had 18 weeks of chemo and was cancer-free. At 3, he was diagnosed with AML, a type of leukemia most likely from the chemo he had previously, which he is still currently battling. He recently had his other kidney removed because it was severely damaged from the drugs – he is now on dialysis and waiting for a transplant. At this point, the possibility of him receiving a new kidney is pretty much zero. In fact, his prognosis is not good at all – he has stopped responding to treatment, he has lost a lot of his hearing, he is very underweight and won’t eat, and overall very very weak. Many of his organs are failing. I spoke with his oncologist on Friday who let us know that he does not think that further treatment will benefit him in any way, and recommends stopping chemo and letting nature take it’s course, as his leukemia is rapidly progressing. If we keep him on dialysis, he may have a few more months left. And if we take him off dialysis (which would be more comfortable for him), he’d have probably about a week at most.

Anyway, I just wanted to give you some background information. Regardless of what we decide to do – he is going to die. There is no longer any hope of him beating this cancer. He isn’t even 5 years old. I am absolutely sick over this, I can’t sleep at night and I am in a severe depression. What I want to know if HOW can I stay positive for my son? How can I make his last few days or weeks the very best they can be? I am an emotional wreck and I don’t know how to stay strong anymore. Thank you.

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23 Answers

Rarebear's avatar

This is a heartrending story. I’m so sorry for what you’re going through. I’m hoping someone here will be able to give you some solace.

chyna's avatar

I am so very sorry you have to go through this and more so that your son is going through this. The only thing I can say that may help you is that I recently lost my mother and as I sat with her at the hospital waiting for her to die, the only way I could cope with it was to keep telling myself that she would not be suffering anymore, that she would be in a better place. You have to believe this, whether you are religious or not. I believe in heaven, but if you don’t, the better place is just that he has stopped suffering. My heart goes out to you.

Nullo's avatar

No parent am I, but prayer helps.

faye's avatar

I don’t think you have to stay strong. Go ahead and cry when you’re holding him. I am so sorry, I can only imagine what you’re going through.

minniemau5's avatar

Hi @Nayeli, I’m not a parent. I’m only 18 years old. I had the same cancer your son had – Wilm’s Tumor – when I was 4 years old. I’ve had quite a few cancer scares since. It’s nowhere near what your son is going through though, and I just wanted to say I am sincerely sorry for what he and your family are experiencing. As I said, I’m not a mother so I don’t know exactly how you’re feeling – but I know this must be the most painful thing a mother could go through. As a cancer patient, I have met a lot of families who’s child unfortunately was given a terminal diagnosis. Those are the hardest words to hear and the hardest to accept, and I think you are an exceptionally strong woman for coming thus far. As for the remainder of his life – you’ve already said it in your question… make it the best it can be; for you and for him. I’m sure you already are, but spend as much time with him as possible. Enjoy him. Make the environment a soothing and home-like setting if you can. I’m guessing that he is or will be admitted to the hospital. Bring in his favorite toys or stuffed animals, or even a blanket, to make sure he is as comfortable as possible. Also, not sure if you have been informed about this, but if you do decide to go the route that gives him a few more months to live, you may want to look into pediatric palliative care. Teams of specialists will work together to tend to the emotional, psychological, physical and even spiritual needs of your son and your family as you prepare to say your goodbyes. I’m not sure where your son is being treated or if this is an option for you, but you may want to look into it. You may also want to think about joining a support group for grieving or bereaved parents.

I’m sorry I can’t be of much help. I know at this point this probably won’t make you feel any better; but your son will soon be pain-free and will no longer have to struggle through the living hell that is chemotherapy. You, your son, and your family will be in my thoughts and prayers.

seazen_'s avatar

I’m with @faye – but I cannot imagine.

JLeslie's avatar

So very sad. It must be almost impossible to deal with something like this. I guess maybe, although I have no idea if this will help, I cannot possibly know how what you are going through feels, maybe try and not focus on your incredible loss, and focus on him finally having relief from his pain. Try to reduce any fear he might have. Maybe children that age don’t have fear of leaving life like adults do? I don’t know? Everything is a mystery and new to them in general. As adults we dread death, because we fear the unknown, or we desperately dread leaving our loved ones. If I am right, and I don’t have any idea if I am, he might wind up comforting you. Not that I think you necessarily should have a specific conversation about death, I have no opinion on that, but I have seen sick children comfort their parents. I do think you should do your best not to be too emotional every time you are with him. Still, he will know. He will know you are sad and worried I would guess?

Does your hospital know of a support group for people who have lost children through illness? Maybe talk to some parents who can tell you about the final days and weeks. I live 25 minutes from St. Jude’s, I bet if you call them they can offer you some help with coping, some resources, even in your area. People come to St. jude’s from all over the country and world.

marinelife's avatar

I am so very sorry that this is happening to your family.

I don’t know if I can offer much, but knowing what you know, you need to narrow down your thoughts to just making one hour pleasant for your son, and then one day.

If he would not be as sick, I think that I would take him off the dialysis and get him outside where he can play in the sun.

Have an unbirthday party for him. Have pony rides and a clown or some music.

Get him a puppy.

Enjoy every second that he has. Take pictures and videos.

ETpro's avatar

My deepest sympathy to you. I lost my only daughter shortly after she gave birth to her first child, but her death was mercifully quick. It is heart wrenching to watch someone so young who you love so much go through such suffering. All I can tell you is that where there is life, there is hope. I think the Oncologist is right. In his weakened state, aggressive treatment is likely to do more harm than good. Give him palliative care and see what nature decides. Let his last days—if that is what nature intends—be as pleasant and pain free as possible.

Summum's avatar

This is very heart felt and one that is very dear to me. I had a son that passed when I made the decision to stop a medication that was keeping his heart beating. I have lost 4 children and each time was very hard and was what I thought, more than I could take. I was called by the Social Worker at the hospital to help counsil the parents who were going to lose children and those that had. I have and always will talk about them and how their last days were. I remember the good times and feel very blessed that I was honored to be my children’s Father. Time is the only thing that helped me cope with the losses and being able to talk about my children. It is amazing how much some are called to bear and how much we actually go through. You can make the decision that is in your heart. I tried to make my son’s last few hours as comfortable as I could and I held him for 18 hours while he passed. When he went he opened his little eyes looked me in the eye squooze my finger then I felt and heard his last breath. I will always be proud that he was my son and how much that he meant to me. I have 4 different graves that I visit every once in a while and put down some flowers and then I look at pictures of them and remember how strong a fight they gave. Please listen to your heart and you will find the strength. Blessings to you and my heart is with you.

Cruiser's avatar

Just be his mommy he so desperately needs….it will be the hardest road of your life I can imagine you will travel. He needs you now with what little time he has left….you will have the rest of your life to grieve. Be there for him….my guess is in his own little way, he will be there for you too!

The hardest part will be choosing….I would give him the best most comfortable days he can enjoy….quality over quantity. HS what a mind numbing question.

SpatzieLover's avatar

My sympathies to you & your family.

I have not suffered the loss of a child. I have had to be the decision maker for several family members, including my father. In all instances, I chose and rallied for the best palliative care that the hospice or hospital could provide.

Right now, my suggestion would be to cry your eyes out. Try to grieve for the fact that you have done everything you could, but it didn’t save him. Pour your heart out as much as you can away from him. Then muster as much of your strength as you can muster and think of all the things to do that you can in his weakened state that will please him.

I have some book recommendations for you to read now, or later to help you through this.
Final Gifts Your hospital may even have this book to loan to you. It can help create peace while being an active participant in the passing.

A Broken Heart Still Beats Besides this book, I would recommend at least a month worth of therapy with a grief counselor.

We actually have a similar situation in our family right now. My husband’s cousins gave birth to a blue baby. He has had numerous surgeries, but it has recently been decided that if he does not have a heart transplant, he will die. He is not a good candidate for the surgery due to other defects, so he will die before 7.

We attempt to make as many days as special for him as they can be. That does not make the inevitable any easier.

My prayers for blessings and strength to you and your family. Peace to your son.

augustlan's avatar

I’m so, so sorry. As a mother myself, I can’t imagine what you must be going through. Just love him, and yourself. You will be in our thoughts.

SeaTurtle's avatar

My wife and I agree. One week of love and comfort between you all and letting nature take its course is better than prolonged suffering hooked up to a machine.
Our hearts truly go out to you and your family. God bless.

filmfann's avatar

My hear goes out to you as well.
Sing to him. It is soothing and loving.
Pray for him. For his recovery, though of course that won’t happen, but also for him to be happy with the Lord. That will make all the difference with you and your recovery from this. (I believe that, at 5, the child will be with the Lord regardless).
Drink in the moments with him. You will dwell on them the rest of your life, and they will not seem as terrible as they do now.

Judi's avatar

I rarely bring up my faith unless specifically asked, but when I feel like I have no more strength to do the things I have to I look up.
I often cry out in song.

Disc2021's avatar

I am very, very sorry to hear this chilling story – it was breath taking. You have my condolences and best wishes.

All I can say is with life comes death – a difficult truth. I hope you’ve enjoyed the time you’ve had with him throughout the years and please enjoy/cherish the time you still have left with him. Time is never infinite.

Meego's avatar

@Nayeli I am very sorry :((
I have a daughter. I also have had loss but not of a child. My father passed from cancer just before my husband passed away, the descision to stop my husbands breathing machine was made in nov 09. Dealing with the loss has been painful and difficult. While he was in the hospital I was by myself. I was there every moment I could be. I read to him, I talked to him I cried to him. I got some responses from him. It was heart wrenching. I’m sure your feeling all of this. Ironically even though my loved one was extremely ill they made me abide by visiting hours. On the nurse change they made me leave. I always went to the chapel and got on my knees, I never prayed so hard in my life. I wrote in a journal. I tried to make myself cry on off time, I felt completely helpless inside though, even while I was in denial the whole time and I still am. This still brings tears to my eyes. My husband was young only 40. He was legally blind by malpractice at the same hospital that he ended up losing his life, it was doomed from the beginning and oddly enough when I look back in my journal entry I had the same feelings. Hope for a miracle, I know I did, mine did not come true but that doesn’t mean they aren’t waiting to happen. Ask the lord to give you a sign, pray for strength. I will be praying with you. If you need to talk you can pm me. I think someone already mentioned this, but talking and memorialising your loved one help alot. Big hugs.

sliceswiththings's avatar

I agree with thinking about heaven, whether you’re religious or not. I am a total atheist but have found that when coping with death, the idea of my loved one in his/her healthy, smiling state in a nice place filled with people he/she loved is immensely comforting. Think of specific people “up there” (your grandparents? childhood dog?) who can take care of your son. This is truly a heartwrenching story, and I will be thinking of you.

john65pennington's avatar

Find yourself a mirror and look into it. Practice a smile and freeze it on your face. I know you have prayed and prayed for a miracle for your son. I just feel it. The smile you are going to have on your face is the medicene your son needs to see from you. He does not understand why this is happening to him and you have a choice: either tell him or keep this to yourself. If you talk about it to your son, this will benefit the both of you. He will understand what is ahead for him and the angels will be there to help you through it. Talk to your son. He may be five years old, but he WILL understand.

I am with you all the way. Turn around and I will be there.

missafantastico's avatar

Take stock in the beauty of every day. Each moment we have on this earth is a fleeting miracle. However you choose to pursue the care of your son, I would recommend the practice of pointing out everything beautiful in the space around you. Share each moment by pointing out the little things, whether it’s how dust is dancing in afternoon light from a window, or the sound of nature outside the door. Really experience as many moments with your son as you can. Be specific. Go in-depth.

It will enrich his time with you and your family. And this way, even many years from now… every time you see something simple and magical happening in the world you can reflect on the bonding experience you have had with your son.

I’m proud of you.

Summum's avatar

You are such a wonderful person and you take your son above all else. I admire you and hope that all will be right with you and you family.

warka1's avatar

good news if you lost hope that means you have hope.
take few seconds now to laugh and cheer yourself, because your hope will return to you
ask yourself what are you gratefull for now? count your little blissing i.e freedom, abudance of rain, etc. then things will work again. simply think about how passionate you were when you started, you know the success then hold that will probel you and restore your hope

Be Inspired

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