Helping Young Children Cope With Cancer

A few people have emailed me along the way about how I helped my children through my cancer diagnosis and treatment.  I wish I had amazing words of wisdom, but I don’t.  I can only tell you what we did and tell you that our children seem happy and well adjusted. 

Meleah probably took it the hardest, not that she really understood what was going on fully, as she was only 3 when I was diagnosed, but she is very fearful and often tearful.  I try to figure out if this is her personality or a little of both.  She is the one that wants to see everything that changes on my body.  If she sees me changing my clothes, she will say “mommy, I wish you didn’t have cancer.”  And I will remind her that I don’t have cancer anymore, and the scars are left from having had cancer. 

Elijah was only one when I was diagnosed.  He is an amazing little boy and just rolled with the punches.  I wasn’t ready to wean him.  I kept thinking  “just one more time.”  Weaning my last child, because I had to, made me angrier than anything else about cancer.  It stole the way I wanted to parent from me and I knew once it was gone I would neverget it back.  I left to U of M for the first night away from my baby boy, one week after my diagnosis, and I knew I would never nurse him again.  My breasts not only hurt from the cancer but they were engorged and full, and leaking milk like tears of grief and sadness.  It broke my heart and still does.

Charis was the oldest and understood the most.  We were up front with Charis from the start.  She could see that I was emotionally and physically not doing well, so it wouldn’t have been fair not to tell her.  Onemistake we made was reading a book for kids about cancer that we had not read before reading it to her.  At the end, someone dies.  I remember her eyes got very big and she said “Oh…that scares me mommy.”  I’m not saying the discussion of the possibility should never arise.  I just wasn’t prepared for the discussion.  However, I think my response was very sufficient for her.  I said “Mommy is going to do everything I can to get better and I’m going to go to the very best doctors.  They will give me very strong medicine that will make me look very sick, but I’m planning that it will make me better.  If  there is ever a time I don’t think I will make it, I will let you know.  Until then I don’t want you to worry about it.”  And she didn’t.  In fact a few months later when I did look sick and I didn’t have any hair I asked her how she was doing.  I asked her if she ever got scared about mommy’s cancer.  Her response was very wise I think for a 7 year old.  She said “when I start thinking about it and get scared I just run around and play and then I don’t think about it anymore.” 

So I guess my one bit of advice is that you need to be honest with your kids.  But not brutally honest.  We told them that mommy was sick but the medicine would make me sicker before I would get better.  That I wouldn’t look very good for a while.  We kept them ahead of the curve by telling them that my hair would fall out before it actually did.  We included them in the “shaving party” and had them help if they wanted.  (Charis did not enjoy this very much)  We told them early on that I would need to have my breasts removed and we reminded them of it occasionally so they were prepared.  We also told them how there would be a doctor later who would give me new “na-na’s.”  And so it was.  We just kept the lines of communication open and we helped them feel a part of everything.  And thankfully we did not have to prepare them for death, but we would have done that had we needed to do that as well. 

So a few weeks ago I was contacted by someone about a new resource for young children and they sent me a copy of the book.  I have to say that I wish we would have had the book back when I was diagnosed.   Here’s why I would have liked it so much:  There are over 50 pages of different scenarios addressing cancer for younger children so you can make your own book to help your child cope with your specific situation.   There are pages that deal with everything from mommy is having chemo, daddy is losing his hair, grandma is feeling badly but she will feel better soon, etc.  You can take pages in and out of the binder as you need them.  It’s a great resource if someone you love is going through cancer.  The book is called “Someone I Love is Sick.”  You can find more information and resources at their web site here.

Prioritizing

Overall my kids have fared pretty well through this cancer journey. I’m sure they have absorbed more than I think. But overall, they have weathered the storm nicely. There have been a few little hitches though. The results of focus being on mom is starting to rear its ugly head, and I’m thankful that I have the time to deal with those issues now.

One thing I just knew would eventually sneak up on us were the children’s teeth. Yes, their teeth. When Charis had her dentist appointment a few weeks ago, I held my breath and waited for the results. Gasp…no cavities….what do you mean no cavities! What a relief. But within a few days, Meleah was complaining of a tooth ache. Busted! So we’ve been to three dentists in two weeks. We have an appointment with the fourth next week. My four year old has 8 cavities that lie between all of her molars. It basically looks like we never brushed her back teeth….and well…..I didn’t for a year because I was too tired to worry about teeth. So the first dentist doesn’t work on children, but looked and said there was a problem, so he sent us to dentist number two. He looked at her teeth and said she had cavities on all her back teeth and he wants us to go to the hospital for outpatient work and anesthesia to fix them. He also lectured me on my reverse osmosis water and lack of fluoride. I went for a second opinion. We did the outpatient thing with Charis when she was two and frankly, I won’t do it again for baby teeth. Not when anesthesiologists cost as much as they do! (try $800 with deductible and that wasn’t even the fees from the hospital and the dentist!) So we went to dentist #3 today and he was a very nice man, and they did talk her in to letting them do x-rays. He said he would do the work in office and do a few at a time. But later that day a friend of mine told me her experience with this dentist and now I’ve called a fourth dentist. Dentist #4 fills cavities with a laser. How about that….a laser. Supposedly my friends child felt nothing and they don’t need any shots for pain or anything. We see dentist #4 next week.

Hopefully my lack of concern with my children’s teeth during cancer will not be as big of an ordeal as I fear. I promise to be more diligent, but I refuse to let those dentists make me feel guilty. I told each one of them I had cancer and her teeth had not been priority….lol…pulling out that cancer card again! But they all quit trying to guess how she had so many cavities and quit asking me questions like…..did she have a “sippy cup?” No, she was a breast fed normal child with a mama who had cancer.

And if you are a mama going through cancer…..I give you permission to not get everything right! Teeth are important….but your children will survive and new ones will come in even if they rot out of their little heads first. It’s Ok to prioritize and it’s alright when you go to bed at 6 pm and you know your husband will not remember to have them brush their teeth, but WILL get them to bed safely and on time. It’s OK to worry about you right now.

Sisters in Survival

When I read about Somerset Studios call for submissions in the theme Sisterhood I did not have any trouble coming up with my submission idea. Yes, I do have a sister, but it is a different sisterhood that I wanted to express my emotions about.

 Sisters in Survival…

Over the past 3 years I have met many new sisters… some diagnosed with the same or similar cancer as mine… some diagnosed with different cancers…some as cheerleaders to help us through this disease… some in the medical field that deal with cancer everyday…my sisters on this very site as well as our visitors…some that have passed from this disease…

I know that many feel the pink ribbon has been overused and exploited, but it has become a symbol for breast cancer so I chose to use that as my “tie” or continuity throughout the piece. I love hearts and color… and felt both fit the piece as we are all different: sizes, shapes, colors, cancers… but love is woven throughout our lives, it helps us heal, and it helps us survive.

I was so happy to receive an email that my piece was selected to be published in the July/August 2009 issue. I was so excited to see it in print when my issue arrived in the mailbox. Page 113….

Sometimes I feel that I do not have much to contribute to this site anymore… but I guess in some ways that is my contribution.

Here is my personal update…

I have reached my 3 year anniversary, my scans came back clean, and the oncologist is moving me to 6 month visits. (A little scary). I just celebrated my 26th wedding anniversary and my 48^th birthday. Cancer does have a way of changing how we look at birthdays. I no longer feel old, but happy to have reached another year. Another celebration.

I think about and pray for all my “sisters” on this site. We most likely would have never been brought together if it was not for cancer, I am thankful to have a glimpse into each one of your lives.

Bulls-eye

Warning:  Discussion of breast re-CONSTRUCTION ahead, with frequent use of the word nipple….lol…so proceed with caution! 

My mom told me that recently Meleah asked her if she had the little “round things on her nana’s.”  That seems like an appropriate question considering that her mama does not have “little round things.”   We’ve always been very open with our kids along the way about breast cancer.   My breasts are a regular topic of discussion in our home.  I’m not sure what we would have done 20 years ago when people didn’t openly talk about breast cancer.

Last week I started looking in to what it would entail for me to have “little round things” on my breasts.   This is considered the second phase of reconstruction.  Shortly after being diagnosed with breast cancer I  learned the details of nipple reconstruction.  How amazed I was with technology and creativity!  Here’s what they do.  There’s a couple different ways they can form a nipple.  They will either take a patch of skin from somewhere else and kink it up and sew it on, or they’ll just use the skin that’s there already and kink it up.  I will have the later if I decide to do it.  Then the third phase is tattooing.  Yes, they tattoo the color on the nipple.  I’m amazed at the reality of this procedure.  I have seen a completed DIEP breast with nipple and it was amazingly realistic. 

Here are my concerns though.  Several women I know have not gone ahead with the nipple reconstruction.  They have elected to keep their “barbie boobs.” and not worry about adding the nipples.  From my reading, it would seem that there is quite an attachment for we women with our nipples.  You can add a “mound” for a breast but our nipples are distinct, so adding a nipple that isn’t quite the size or placement of the previous nipple or getting the color and having it seem totally wrong can be distressing.  I was already distressed enough by my little friend “digger” on my completed mound, I’m not sure I’m up for nipples that might cause me distress…..lol!

The second thing that concerns me about nipple reconstruction is the whole appearance.   I think I ask my plastic surgeon this question every time I’m in his office: “is there any way to make my flap darker?”   It just seems with tattooing and technology there would be a way to match my skin tones?  You see, my chest is very dark because of radiation.  I have a constant tan.  It seems to be lightening a little bit but just under my breasts there is a line where the radiation starts.  Dr. D took the skin from my belly, which probably never saw the light of day.  So I have headlights….and I don’t even have nipples.  I joke with Jeremy that my breasts actually glow in the dark.  So with the scars circling my breasts, ultra white skin, what if adding nipples makes my breasts look like a bulls-eye?  Seriously.  Dr. D says adding the nipples sort of pulls it all together and my “glowing” will not be quite so bright.   But I’m afraid my breasts might look like a target ad in the end.

While I was looking around for information about nipple reconstruction, I found this very lovely informational segment on the University of Michigan web site about nipple reconstruction.  It had me laughing so hard I fell off my chair.  It was one of those laughing moments that amuses Jeremy so much because I was laughing so hard I was literally crying and couldn’t breathe.  Here’s what it said:

“Nipple and areola (the dark circle around the nipple) reconstruction is completely optional. Some women want only the shape of the breast to fill a bra, and decide they don’t need a nipple. Another option is to apply removable nipples that stick on with adhesive. These rubbery tips are shaped like a semi-erect nipple and the color and texture are quite lifelike.”

Now, if you wear fake nipples, I am so sorry I’m laughing.  If it works for you, then go for it.  Maybe it brings some normalcy to life.  But for me, if I tried to wear these things while Jeremy and I were being intimate, well, you can imagine.  I would be laughing hysterically the whole time.  But hey, if I had these on hand I could decide to wear nipples whenever I wanted.  I could wake up one morning and think “I’ll wear nipples today.” 

Alright, enough about nipples.  I don’t have to decide this today thankfully.

Mothers With Cancer, Worldwide

While doing some site maintenance today, I noticed that our little map is about to reset. Here’s a snapshot of our visitors over the last 10 months. We really are reaching a worldwide audience.

Welcome, friends.

I also heard about a new (to me) program today that sounded exciting for our (U.S.?) readers:  river rafting in Colorado for cancer survivors.  Travel scholarships may be available for first time participants.  To find out more, visit First Descents Adventure Program.

On a more somber note, I’d like to note the passing of April, One Mother With Cancer.  She was not affiliated with this group, but she was invited as one of the earliest cancer bloggers, and many of us were inspired by her story.  Godspeed, April.