Calling All Survivors!

If you are looking for things to do- visit www.whatshappeningmanatee.com It has a full listing of things families can do for FREE in Manatee County. I would recommend getting some children's stories about hospitals and illness. She may be little but they still pick up on things. Story books and puppets help kids work things through.

Hi J. K. A friend of mine sent me your email. I too have a husband with stage 4 colon cancer. He is 36 years old. I have two boys. One boy is seven and the other boy is 18 months. My husband was diagnosed last march. It has almost been a year now. At first we were completely devastated but we have now learned to live with this disease. My seven year old has been told what may happen to his Daddy and has been very good about dealing with it so far. He does act out at times but we get through it. My 18 month old does not really know what is going on. He was just six months when my husband was diagnosed. He may never know him like my older son does. I feel for what you are going through. I can only imagine. I'm here if you need to chat. Feel free to write me. C.

This is not first hand advice but I had a very good friend of mine get stage four colon cancer and he had two young children and one on the way. My heart goes out to you and your husband (and, of course, your daughter). I didn't know his wife that well but I know from his perspective it was important to him that he spend as much time with his kids as possible. He told them that he was sick and that he loved them very much. His wife spent a lot of time at the hospital and brought the kids with her. She didn't want them to miss spending one minute with him. I don't know exactly what they told their kids but I know they didn't keep a lot from them. I hope this helps and I hope your husbands health returns soon! MY THOUGHTS ARE WITH YOU!!!

Hi J., a high five to you for what you are going thru! A few things I thought of while reading...
First off, this age (2-3) is very challenging for parents and kids. As a single mom I have been doubting my parenting methods like crazy. I have also experienced more guilt than ever before. So when I read that you thought your time wasn't enough I recognized that feeling of guilt. Lately I have been trying not to feel guilty. We are doing the best that we can. I have realized that my son is affected by the amount of attention I give. So try not to be so hard on yourself, you are doing a great job.
My father was rediagnosed with bladder cancer and they also found cancer of the prostate. When he is not feeling well I tell my son exactly that. Papa does not feel well. There is nothing wrong with being honest with the little ones, they are so much more aware than we realize. They are also so intuitive.
Some ideas for fun things to do with your daughter: Jungle gardens, marina jacks, the childrens garden, pitter patter. I will keep you and your family in my thoughts and prayers. Good luck and dont forget you are doing the best you can and you are doing great!

Just tell her everything. Include her. Make pictures going to treatment, after treatment. Record his voice. Let them have sick moments, scared moments, hurt TOGETHER. The miracle is in the together. Let her make special pictures and sing songs to her daddy and just touch him and watch tv with him and listen to music. He is not contagious. ASK GOD FOR PERMISSION to quit your job at this time. THEN let GOD work it out and it will be done. She really is capable of understanding more than the booboo thing. Psalm 8:1-2 "O Lord our Lord, how excellent is thy name in all the earth! who hast set thy glory above the heavens. Out of the mouth of babes and sucklings thou has ordained strength because of thine enemies. Do you know that a suckling baby is about your baby's age.(Jesus teaches little children to praise PERFECTLY. Their example shames and silences the enemies. This illness is an enemy. God is able to let your childs love bring soothing and comfort to all of you. The Psychologist can help you all prepare to talk with her about the treatment and equipment to help her not be afriad. Matthew 21:14-16. The blind & the crippled came to him, and he healed them in the Temple....even the children in the Temple shouted 'God bless the Son of David...Jesus replied, didn't you ever read the Scriptures? For they say, 'even little babies shall praise him'. At a time when your spirit needs healing, God will allow your child to receive his comforting spirit in the presence of you and your husband and allow the three of you to share a peace that surpasses our mortal understanding. Sickness is a part of the healing process of our lives. It is meant to be shared and in some ways lighten the impact upon the one. If you don't include her, she might get take it upon herself to fill in a reason. Often children think it is somehow her fault since she is the only one excluded from what is actually happening. It can not be more frightening to her than being separated from you two emotionally and physically. The hospital will not scar her. She will see help and caring, and hope and healing. Even if you accept there is no hope for your husband's recovery, share that he is very sick. And you will be able to share that sometimes people don't get better. If they don't get better then they will not come to live in the house with you. Tell her where you believe his spirit will live. And tell her what you all will do if he does not get better. But don't let him disappear without including her in on how sick her daddy is. J., are you and your husband believe in Jesus Christ as your saviour and Lord. John 3:16. I am a whosoever! For God so loved the world that he gave his only begotten son that whosever believes in him should not perish but have everlasting life. God has not condemned you guys the reason your husband is sick. But this can be a most blessed time to share with your baby about Jesus. The Spirit will teach the three of you together what to say and how to speak about your feelings. I was 28 yrs old and my daughter was 7. I had lung cancer and spent about 18 mths in Walter Reed. I was told I had 50/50 chance of walking out alive with a stage 3 cancer. I really wanted my child to know that I was secure in Jesus and I wanted her to know Jesus for herself. My child was not interested in my adult self talk. She just wanted my hugs, my hope, my smiles, and that her presence comforted me. It was not words, it was being together, touching, seeing not understanding.Just sharing. We did acknowledge that the feeling between us, the love we shared was possible because of Jesus. It was enough for me. It lessen my fears and increased my hope, not so much to live longer but that my life and her life had meaning and purpose. and yes, I am a survivor! She is now 36 and I am by choice (23) smile,and she is now struggling with adnormal cells when tested for bladder cancer. I think she is much more couragious than I was at that age. We are still surviving on hope, presence, hugs, Not so much talk as we don't really know what to say. Except I love you and lots of kisses. We say thank you Jesus for comforting us in this new day. I love you J. and will fast and pray for you and your family.

Hi J.,
I dont have any suggestions, I am a survivor of grade 3b Breast Cancer , we were in your boat sorta with our 17yr old nephew & 11 yr old daughter & our soon to be 2yr old son &@ 2weeks b4 I turned 35yrs & 18 weeks into a new pregancy our world went spinning. at 20 weeks we were told she should preterm if I choose to wait til after the baby was to start treatments or I really need to start chemo now. {The idea that this pregancy was accident to begin with was a big OH NO IT CANT BE!! but then being told had I not gotten pregnant to have breast symptoms i would have more in like been dead by the end of the year {2004}. Lots of praying & talking to hubby, with a chance of 47% survival & 50% chances of it come back with or without me loosing my breast-We choose to start treatment & I choose to keep our baby. I gave birth to a little princess SHYANN 2/7/05 5lbs 6oz. {note they gave me nothing not even tylenol for pain because I had my last treatment 10 days earlier. 12weeks later unwent another breats surgery to remove the remaining cancer & 12weeks after that started 2 round of chemo, feb2006 unwent more surgery & 4 weeks started radiation. It was hard to care for the new one & 2 yr old son & harder on the older ones as they took my place in caring for them. Reality made them grow up really fast by their choice, we never forced them to care for the babies, as for the 2yr. he knew I had booboos & was very sore, he has to be specially careful around me. I told him all the time I loved him so much, that no matter where I would be I always be right by him & touched his chest. I told them all in one way or another that Some day God going to have send momma home to work upstairs as with the angels, Its will be good as momma will have no more booboos. Just know I love you. And Im always will be watching.. Even though I cant say it will not still happen as I have not celebrated my 5yr-10yr milestone with being a survivor. I would honestly allow her every moment with daddy as he can with stand. Even when my heart & spirits where week it was my kids that kept me fighting. Be honest with her, yes it might make her grow up alittle but your hiding behind lies or avoiding the truth. Daddy is really sick & doctor wanna help him get better & he hurts alot so they want him close to them so he can get the meds he needs. Let her decide if he wants to see him and dont be upset if she says Yes or no. Children are funny on how they take in things. My 2 daughter knew before we did that her greatgreat gramma had passed. She told me the our oldest son 4 1/2yrs old son that passed away 6months earler was waiting for her under a tree with a really tall man. How do you know that? Chad tells me him waiting on lilgramma under the tree, she be okay. Confused a shocked it was true she had just passed away. But we tried to hide his finally events the burial & still today @ 13yrs she wished she was there to say good bye. The one thing he wanted was his sissy and by the time we brought her to him it he was already gone just a body with tubes. yes she was confused but she knew God had already seen to it to talk her through things. Mind I dont go to church every Sunday/ Wed. but I BELIEVE...Even though she has grown up alot for age, she still knows she can & does talk to him..
As I said I have nothing to offer in what to do just hope sharing some of our experiences will give you a message of courage & strength & a thought you might be able to put into action that helps you all. Its not what you do that matters the most to them it how you do it. What you think is a boring routine in fact just may be all she really needs & wants to do. ASK her what she would like. Dont think that entertaining her all the time is what she needs, just time & talking.
I will keep you & yours in in prayer.

J.... I don't think I can offer much advice to your situation, but what I can say is that you do have a good head on your shoulders. It is important for you to enjoy time with your daughter and one on one special outings is good. One on one time at home is also good. Right now, she is so young that she doesn't understand all of the sad things going on right now and perhaps thats a blessing. Keep your chin up and try not to let her see you crying.
I think I would tell your daughter that daddy is in the hospital where the doctors are taking very good care of his "boo-boo" as you called it. She should know that her dad is safe and being looked after until he comes home.
Please e-mail me at ____@____.com

My dad was diagnosed with colon cancer (also stage 4) when I was twelve... so I was much older than your daughter but I remember being really aware that there was a lot going on and a bit resentful that no one would tell me exactly what was happening. I was very mature so I could handle the truth on the occassion that my parents were upfront and honest with me.

I suggest explaining everything to your daughter in a kid-friendly way. ie through doll play, there are children's books on illnesses and hospitals etc...

as for things to do... maybe keep it simple. How about a walk, trip to the zoo, an afternoon at the beach?

I know you are going through difficult times. God will give you courage and patience. Strangely kids are very resilient and they like to do something again and again. When I was extremely swamped, I took my then 2 year old to Trolley in downtown (That was hours of fun .. get down at various stops, roam around and get back on), and the Beach for endless Cheap and Free Fun. If it is at all possible, may be your husband can join on some days, when he is feeling better. Don't worry about new things, as long as you can somewhat relaz and join the fun with her, she will enjoy it. I am not sure what your situation is, but my 2 year old visited me in hospital -- I was pg with twins and was there for 4 months, and he could see the IVs and the medicines everywhere -- he asked questions, but he loved eating ice-cream there (since he was not allowed to come to me or near my bed). Not sure, if you are in a situation that you can take her to hospital or not, but explaining her and talking to her when she asks question -- will help her -- just not very complex answers (like you are already doing). Please let me know if you need any help, I will be glad to help. My boys are 7,4,and 4 and they are great with each other and with their friends.

I cannot imagine how hard this must be for your family. Have you considered co-sleeping with your daughter? My husband and I share our king size bed with our little one and it has truely brought us closer together. I believe she is happier and healthier because of it. We call it night parenting!

J. I am so sorry for what you and your daughter are going through. I cant even imagine how hard it must be for you. My family and I will hold you in our prayers, A.

Dear J.,

You sound very competent and strong. Hats off to you.

As far as your daughter she could just be entering the terrible two's and the acting out is the announcement. :-) I'd say it is normal progress. My opinion on special things is just having fun with your daughter. Kids love their parents most and you having fun with her is the best gift there is. Story time, hide and seek, going to the park, walking on the beach. One on One time will help her deal with the vibes that are happening and she does pick up on them.

Cancer in any form is rough, especially stage four. I do not know where you are located but I am in Dunedin, and if you ever need to drop your daughter off so that you can be at the hospital, you could always contact me. ###-###-####. I used to do volunteer work involving cancer patients and their families. You might be too far away, I do not know. But, you have my number.

It sounds like you are keeping your chin up and doing the best you can. Sounds like your doing a great job during a time that is indescribely stressful.

Good luck and keep it up!

D.