Need help on talking to my son.

[Stephanie B.]

Hi everyone,

I am on my second round of chemo - this time for liver mets. I have been doing Herceptin since Oct and then we started up on Taxol in February. I have had 5 rounds of Taxol. I had a scan on Friday and hopefully it will be good news. Also during all of this my Port stopped working and I have to go in on May 1st and have that replaced. I thought my son was doing ok with all of this. He was 5 when I went through the first round - lumpectomy, mascectomy, chemo, radiation and was a trooper. I also have a 2 1/2 year old daughter who doesn't really understand other than mommy needs a new boobie and has fuzzy hair now. Now he is 7 and has been doing ok - I told his teacher what was going on and she has been keeping a close eye on his moods and told him if he ever wanted to talk to let her know. He has taken the time in class a couple of times to make me a card during his free time with her help. Last night he came in while I was putting laundry away and I could tell something was wrong. When I asked him about it he told me that he was really worried because I was having to do chemo again and he was afraid that something was going to happen to me. I tried to reassure him that I was going to fight this with everything I had and that I wasn't going anywhere (in between the tears), but I don't know if it helped or not. Does anyone know of any resources on talking to children. That had to be the hardest thing I have had to do through all of this mess.

Thanks

Stephanie B.

[mts]

I, or my husband have a pillow talk every night with my son. He either comes to my bed, or I to his and we just lay there for 5 minutes (sometimes less) and we chat about anything HE wants. Sometimes we talk about cancer, sometimes we talk about Sponge Bob. Last night we talked about cheap luggage ! Either way, we communicate, and whatever is a concern to him.
I had not realized how "deep" kids can be...
When he was 5 yrs old -I took him to chemo infusions with me. He became accustomed to seeing other people with cancer and realizing they were all people... just like me with an illness that required drugs that made one fell and look pretty bad. I tried to keep every aspect of his life as scheduled as possible, just like when you are not going through cancer treatment. He was more concerned about my appearance than my actual illness. Some kids would ask what was wrong with me. He was embarassed to answer. I allowed him to have a few kids over to spend the night, etc and those kids saw my normalcy... one little boy would wear my wig and we would all laugh. It certainly made my son more comfortable to see other kids accept me. Kids will be kids, and there always will be those that will say stuff.
I became the cupcake queen (still am) in his class. I am now the most popular mom in his class... I helped buy his friends with food, and darn proud of it.
Now he is 8 ( I also have a 5 yr old daughter) and until last September, I was still taking Herceptin. Cancer is a part of life in our household. They both know there are people that can't walk, people that can't see, people that are shy, people that have bad habits and people like me. The more they saw and learned, the better they are able to deal with my illness. Knowledge is powerful, even for an 8 yr old! I know that being so matter-of-fact with an 8 yr old takes away from their innocence- I hate that my son worries too. But the important thing is to give him the knowledge to cope. I sometimes ask him to help ME feel better by rubbing my feet for 5 seconds, or getting me a kleenex... he especially likes to answer the phone now. He has become a stronger kid emotionally and better at "moving on". Try to empower your child by allowing him to take an active role in your treatment. Of course he cannot make clinical decisions for you, but there are ways to make him feel included in the process. People are generally very willing to help. I think kids are especially gifted in this area if they are given the "limited" responsiblity to do what they can to feel included and helpful. They want to feel like they matter. They are also incredibly resilient. I know its painful- and that it is difficult to hide your fears too.

I wanted my son to "grow-up" and understand what was happening to me so that I would not feel bad for him.

In the end, it was my opening-up to him that really made the difference in his approach to cancer. He will worry no matter what- that is normal. If your cancer makes him grow-up a little sooner than most kids, look at it as an advantage for him.

Warmly,

maria (MTS)

[Mary Anne in TX]

Hi Stephanie! I have grown boys, but one is a single parent and for now we have his little girl, our granddaughter! She is 7 1/2 and has had a difficult time with my illness. I remember last year when I had no hair going to her kindergarten graduation and causing her to hear some ugly comments about the scarf on my head. She was confused that they didn't like my "hair do"! I told her that I didn't either, but didn't have a choice. In the past year, I have had lots of conversations with her about my illness. She has tried to plan her future without me, just in case. She has come up with possible families to take her in, etc. Ugh! What a time all that was. Thankfully, we have gotten past that part. But she does worry about my dying and leaving her. She has a mother that gave her up and a dad who stuggles with alcoholism. My husband and I have decided to just listen to everything and all she has to say and try our best to comfort her. Sometimes she cries, I give her lots of hugs and tell her that there are many who will always keep her safe. (I have another son who would fill the role if needed and has pledged to do so) It gets easier, but there are still hard times for her and for me. Then we talk it through and talk about all the "safety nets" waiting to help her if necessary. I think the talks help me as much as her - maybe more! I teach her everything I can think to teach her and just love her and try to keep her life normal (whatever that is) and filled with lots of activities! Best wishes to you and trust your heart. Just love and talk and talk and love. ma

[Bev]

Our local hospitals offer support groups for children, maybe not as young as your's. Also a group called Living with Cancer. Not sure if they're national or regional.

I just read a study that the disease is more stressful for the family than the patient. Yikes. Should you see aberrant behavior, I'd guess counselling would be in order.

I think kids can really tune into your anxieties. You're being honest. You're doing everything you can. The cancer may be an emotional scar. Scars heal. Scars are stronger than the original. Kids are pretty resilient.

Best wishes for a successful treatment. Bev

[Shell]

Call your pediatrician and get a recommendation from him/her for a theraprist, as there may be a time when you want to have your son be able to talk to someone. Your school may also have those resources available...

Regards,

[karen raines hunt]

Hi,

Try visiting the American Cancer Society website and put in your zip code. From there resources available in your area should come up. Many places have programs for children who have a parent with cancer. I have heard the programs are excellent and available for a range of ages.

Karen

[vickie h]

My children are grown, but I have 4 grandchildren (2 of them lived with us, along with their mother, until last year). All of them were afraid because of what they were hearing from other children at school about cancer. I started taking them to my chemo appts., let them shave my head when I started to lose my hair, went wig shopping with them, and the nurses have even let them remove the needle from my port after the infusions. Most of all I was honest and loving in our talks about the disease and the possibility of my death. I told them that we all will leave this Earth someday and that death should not be something to be feared as much as being accepted as most other cultures do. We talked every day and I let them talk about anything they were feeling. And it has made a huge difference in the 3 years I have been going through treatment. Today, They are 5, 7, 71/2, and 11. 3 boys and 1 girl. The mainstay of it all is a faith in God and the knowledge that we are honest and that I won't withhold anything from them. Love, Vickie