Terminal child

[sandra1]

Hi.  First time doing this, so bear with me.  I've got a 6 year old with terminal cancer.  Went through the chemo radiation thing when she was 4.  Had a good year hospital free.  Now the cancer is back and she's got a few months left to live. 

I'm finding that I am pushing people away, left, right and centre.  How can I be more open to allowing people to help me?

[kalimac]

Hi, sandra, I'm so sorry you are going through this. I understand completely. I lost my 20 year old son in February to a rare abdominal sarcoma that he had fought for three years. What is important for you to know is that you are not alone in any of this. You are pushing people away because you are preparing for what is going to happen. Do you have a pediatric medical social worker or pediatric hospice working with you? If you do not please ask your childs oncologist to point you toward these services. When my son was dying we had access to a pain and palliative care pediatric oncologist who was absolutely wonderful. These people can guide you through this painful, painful journey.

Please post here and tell us more about your beautiful child.

Hugs to you.

Patty R

Mom to Nathan, dx stage IV DSRCT

11.13.87 - 2.11.08

[mikesmum]

Sandra1 - As Patty says, you are pushing away to deal with the now.  Its a form of 'self preservation' and many times its so all your energies are focussed on your child being everything she needs.

Linking in with a support network that are part of the careforce is something you can do now......it truly will be of value to both you and your little one....These wonderful people have the insight, training and most of all the emotional distance (though at times that tends to blur) to be able to assist you at this time.

Keep coming here.......post if you are able, it might just be a soft place to come and land occassionally when it all gets too much.

I am so sorry your little one is so ill.  My thoughts, prayers and energies are with you and your daughter.  Take care of the mummy, your daughter needs her. 

Trudi

[mikesmomrs]

Hi Sandra:  I also lost my son to cancer...Mike, at 31, had a first brain surgery, then a second two weeks later, then chemo, radiation, 3-4 months of holding our breath, and then the new tumor, and "three-four months to live."  I also found myself pushing people away, and realized afterwards that it was likely because I wanted to do all that was necessary to make him as comfortable as possible and could not trust ANYONE to do that besides myself.  Once he was confined to bed, if I was not there every moment, how could I know that he was getting the best, most attentive care?   A mother needs this.  But, also, in order for you to provide for your precious little one, YOU must take care of YOU.  And as others have said, contacting a hospice can be a wonderful assist for you.  They are wonderful, loving, caring people, with much knowledge about caregiving, and will help you more than you can imagine. 

I am so very sorry that you are going through this and so sorry over the illness of your sweet little girl.  You are in my thoughts and prayers for strength.  I would like to share with you one of the most profound things said to me during the last weeks of my son's life, when I was involved in 24/7 hands-on care of him.  Our parish priest, a close friend, told me that I should be aware of every touch, every sigh, every moment shared with Mike, because I was assisting him in his leaving this earth, to meet his Heavenly Father, and my assistance with preparing him for this journey would be something that would be with me for the rest of my life, and something that would eventually bring comfort to me.  I look upon that time as a precious gift to me....Mike's wife was unable to provide this level of care and asked that I be the primary caregiver for him.   I was honored to do this.  And eternally grateful that I was allowed the privilege.   I was also blessed with the opportunity to tell this to my son while he was still cognizant enough to understand.  While your daughter is likely too young to understand your telling her this verbally, I am sure that your ministrations to her tell her with every loving touch and caress. 

I wish you peace and strength.

carol  mikesmomrs

[heathershope]

Sandra1...I've been off line awhile and just now saw your post.  I lost my daughter Heather to a rare form of nueroendocrine pancreatic cancer last May when she was 21.

Don't put expectations on yourself to about the right or wrong way to deal with this painful event.  I wanted to spend as much time as possible with my daughter,.  I didn't think anyone could take as good of care of her as I could, I didn't want their opinions about something they new nothing of and I didn't really want them around too much.  For me it was wanting time with my daughter without vying for it with all the family and friends who came out of the woodwork when she was diagnosed and suddenly wanted to  be around her, partly it was protective in order not to tire her out and partly it was emotional.  It was all I could do to stay strong for her while dealing with this nightmare, I didn't have time or energy for anyone else.  Sounds selfish...so be it.  Heather was my prioity and she was waht mattered to me, end of story.

However...do take time for yourself occassionally or you will burn out.  Also I do suggest a good counselor...my counselor has been a lifesaver as have parent groups and BI.  You will have people say some pretty stupid things to you and the truth is only someone who has been through this truely understands the depth of the grief.  I am sorry that you are having to join this club that no one wants to be a member of.  Losing a child is the most devastating loss you will ever endure.  We are all here to help, and you may be surprised to know that you will help us too.  Remember there is no wrong way to feel.  Don't be afraid to be straight with your feelings here, no matter how "wrong" you think they may be.

God bless you and I wish you much time with your daughter and when her time comes I pray for a peaceful passing

Terri. 

 

[sandra1]

Hi there,

It has been a busy month since I last checked this posting. Thank you for your kind words of support.  It's almost too much to take in, the feelings of kindness and support. 

We are doing well with more good days than bad.  My wee one is home from school today as her energy is not top notch.  We are waiting to hear from the Wish Foundation in the hopes we can take our family to the Gold Coast in Australia for my elmo loving girl to go to Sesame Street Beach there.  We want to grab hold of her healthy moments she has. 

If any of you have other children, how do you handle their grieving process?  I have three other children aged 15 through to 9 and I do wonder how it will affect them.  Also, did you have a funeral for your child?   Does the school usually want to have a service? 

 I feel I have to have as much in place before she dies because I don't imagine I will be very functional when it happens. We have no family here in New Zealand, it's just the six of us.  My parents have died and my husbands parents are elderly so there is no one to come out and help us (we are originally from canada).  This isn't something that really comes to mind when one plans to live in a different country!

Anyway, thanks for the support.  Sandra

[heathershope]

Hello again...I was surprised to see your post today but then I'm surprised I checked the posts today.  Tomorrow will be the one year anniversary of Heathers death.  She died the day befor mothers day last year so this has been a pretty rough day for me as willl tomorrow be also I'm sure.

I hope your trip comes through soon and you have a winderful time.  We took adavantage of Heathers good days and did all we could with her.  We traveled from June 06 thru Nov 06 at least monthly.  After Nov she was a little to frail to risk getting to far from home.

We had a visiatation and a memorial service for Heather.  We had her cremated at her request with no viewing. I had ALL the arrangements in place before she died right up to the little handout programs, the room, the number and times of the visitations and services..the only thing I had to let them know was the day when it came.  I was like you.  I didn't feel I was going to be able to handle any of that after she passed and wanted to alleviate the stress, but let me say going to plan your daughters memorial service before she is dead is very surreal and very hard.  Some in my family thought I was morbid...I don't care.  I am glad I did it because it freed me up to regroup and just grieve for a few days after she died. Heather being older had actually planned much of her service herself, chosen her music and such, I just needed to get the info to them.  Another hard thing to do...talk to your child about their funeral.  My opinion...and it's just mine, you have to do what is best for you, BUT I say...take care of it anf them just enjoy the hell out of your child while you can.

For what it is worth, you do go into some state of numbness right after their passing.  I won't say you won't cry because you will, but you will be able to do things and take care of some things because you will be in fog...like a dream/nightmare that doesn't really feel real. It's when this numbness starts to wear off that you really feel the pain.  I am so sad for you because I know what you are about to face, and it is hard.  But you can and will face it because you have no choice.  There will be times you don't think you can go on...breathe through it...the feeling will pass.  It will come back again, but it will pass again and eventually become less and less RAW..never gone, just less raw.  I hope I'm not saying to much. It's kinda like the pain of childbirth, even if your told, you don't really get it till it happens.  Whatever happens come on here or e-mail me personally, you will have thoughts and feelings that you will feel like they make you crazy or horrible...but they are normal.  You will know what I mean when they happen. For instance...last christmas...I ripped up and through away every card that came with a picture of someones happy intact family...jealousy!!!  But I have heard the same thing from many grieving parnets.  Remeber that, your feelings are your fellings and they are okay...just talk to someone "safe" about them.  Someone who won't judge you for being normal and in pain.

Hang in there.

Terri

[mikesmomrs]

Sandra:  Everything that Dee has said is so true, and as she said, I hope too that I am not saying too much, but I remember so well that I was wishing someone would come and tell me exactly what to expect and when, etc.  Of course, everyone is different, so what someone says happened to them may not happen to the next person, but I think the pain is the same...you are losing your precious child and all you want to do is climb into their skin and take it from them so that they can live.  No one had the recipe for that...

Mike also planned some of his services...he requested that his older sister sing "I Will Remember You" at his service.  She knew she wouldn't be able to carry it off at the service, so she and a friend who plays guitar for her when she sings, went to a recording studio and recorded it before hand.  The upside of that was that Mike got to hear it before he passed...he was very happy and so pleased that she did it.  He also requested to be cremated, and to be "waked" in his favorite Bob Marley shirt...he wanted one day of viewing, and then the memorial was the next day.  He had said goodbyes to his two older boys, who were 9 and 10 at the time, but his baby was only 20 months so of course he didn't understand, but Mike did hold him and say goodbye in his own way.  Of course, with your little one being so young, it is difficult to do so much preparation, and it is so  important to keep doing what you are doing...living each moment, taking advantage of every minute, loving, caring, making memories.  I too hope your trip comes through soon.  Our family and friends raised some money to send Mike and his wife on a honeymoon (they didn't take one when they got married, just 5 months before he was diagnosed), and they went to Jamaica.  He was so, so happy.  Sarah was scared to death, so afraid something would happen to him while they were there and she wouldn't know what to do.  She put up a brave front, though, and the did have a good time. 

My best advice, like Dee did has said...make memories, lots of them, and I would like to add make movies, take pictures, tons, take pictures of everyone together....for some strange reason, our family had the habit of taking a picture of "someone" either at their birthday or whatever, but few pics of everyone together.  I wish so much we had done more of the "together" photos.  Faces together, smiling as if one broad smile across all the faces...I love those pictures...they speak volumes.  Be sure you have recordings of her voice, it may be a while before you can listen to them, but you will have them for whenever that time comes.

As for allowing people to help you, I can so understand your hesitation, but try to remember that they love her too, and they need memories too, although when it comes right down to it, you are her mom, and you have the say in what goes on as far as her care, etc.  Caring for someone as they pass from this world is probably one of the most intimate things that someone can do for another...I was so very blessed to have Mike's primary caregiver be me...a gift I will treasure always.  But you do need the help of others.  When the time comes, hospice is a Godsend. 

You asked about the grieving process of your other children...one way to help with that is to let them help you with your daughter...Mike's older sister, who is the younger of his two sisters, was here with him every moment she could be (his older sister lives in Virginia, so was only here off and on).  Her work gave her liberal leave, and she would stay with him 2-3 days a week, once he could no longer be left alone.  They would go off in her car, with the radio blaring, Dunkin Donut coolatta drinks in hand, singing and laughing...she treasures those memories.

of course, your children are younger, so you would have to be creative in the ways they could be with their sister and help her through these months.  Perhaps reading to her?  Playing a game with her?  A simple thing such as brushing her hair is a way to become closer.   I don't mean to say for them to treat her like a baby, but they can go out of their way to try to do special things together.  Of course, at their age, the younger ones likely don't grasp the full concept yet...they see her now, walking around, going to school, etc., and don't realize that the future will not be like that, until that future is part of the present.  Encourage them to spend time with her in fun ways...

I hope I don't sound like a "know-it-all," I don't mean to.  And I certainly don't know it all...I just, like Dee and all other mothers who have dealt with/are dealing with losing their child to a terminal illness, know that each day is a treasure, and while we can't sit around just holding them (although we do wish we could!), we need to be sure that every moment counts...love, love and more love, fun, sharing, talking, all of those things are so important, for all of you. 

Please come here, as Dee said, you can email me also if you like, and ask anything you want...nothing will seem odd or unusual...you are in a situation where anything and everything is "normal" so please don't hesitate if you have any questions, etc.

I send you strength and prayers for you and your daughter, and the rest of your family.  It is too bad that you don't have extended family nearby, but to be honest with you, other than his wife, sisters and closest friends, extended family were not about when he was ill, and I really wouldn't have wanted them there...it would have meant less time for me;  as Dee said...selfish?  yes, likely.  But I don't regret my being there every minute.  I treasure it. 

love and peace,

carol  mikesmomrs

[sandra1]

Thanks guys,

You made me laugh with the ripping up pictures of the happy families. What a relief! It's so true for me right now. The woman down the road has five healthy children around my kids' ages and all I want to do is spit on her.  It's terrible!  We've been neighbourly before this, having coffee, chatting, kids playing together.  But since this, it's like all my anger towards cancer is directed at her.  I want to scream in her face quite moaning and just get on with it--your kids are healthy! So in the best interests of peace in the neighbourhood I nod and wave and have no contact with them anymore, much to her confusion.

So thank you.  I feel less like an evil person for directing such hate at her. 

And letting the kids help take care of my youngest is something I've never really considered. I've always felt it was up to the parents.  One of our kids does play with her a lot, but I may try the babysitting thing or maybe they could give her her nighttime bath or something. 

Thank you for your honest replies, it has helped lighten the load I've put on myself.  Eased the mind a bit.

Cheers,

Sandra

[heathershope]

Thank you.  You gave me a chuckle with the image of spitting on the woman with the five healthy children.  I know we don't really wish ill on anyone but this is certainly unfair and I think we deserve a little jealous envy amongst ourselves every once in a while.

I feel so awful when I think of you.  I know exactly where you are right now and it is such a scary place to be.  I pray you get plenty of time with your little one and when the time comes...I pray for a peaceful passing.  Sometimes that is the best you can hope for.  I hate that I have to say that but it is true.  One of the hardest days of my life was the day I had to stop praying that "today would not be the day" and start praying that God take Heather soon and in peace.  It goes against everything you know and feel as a mother to pray for your childs passing but I could not  ask that Heather stay in pain to prevent myself from feeling more.  Enjoy every single second you have.  I hope I'm not repeating myself...I don't even know what I say half the time anymore.

Here's a picture of Heather. I would love to see your little one, too.  God bless and peace be with you.

Terri