As I kiss my daughter's head, I'm  reminded again that she is not free to go about her days as a healthy child. That I no longer see her travel from room to room with a cartwheel. I'm  reminded not by the nearly hairless head that I kiss, but by the smell that  used to bring a deep sigh and comfort that now has with it something new, something foreign. She is excreting the toxins that have been pumped into her small body for the last five days. While I would wash my hands without question after changing a bed wetting or cleaning her face of  vomit, the frown inducing thought that I must wash my hands after wiping away her tears, is one that is hard to push away.

The kisses I leave  her with on her newly bald head are left with feelings of awe.  When I left her to ponder my offer of being bald alongside her, I was relieved when she came back with a convicted "no". I had let my hair define me as a woman, control my moods from day to day. Let it decide if I was going to feel
beautiful today. But here this child sits. One who marched her way to a stylists chair and looked at me to tell her how short she would like it. Even giggled at the confusion the woman responded with. Armed with friends that have taken us under their childhood cancer wing, it gave me some ease to watch Carmen laugh with a teenager who lost her hair twice and was looking  back at my child with gorgeous brown locks. Being part of this club was a decision Carmen made for herself. She wanted the hair gone...she wasn't interested in watching it fall from her head for even a day.

The club she jumped into with both feet, comes with considerably more information than I am willing to share with her just yet. But I dread the day I need to tell her that her life as a woman and the paths she decides to take have been forever altered by our options to save her.That her abilities to one day carry her own child may be not within her reach. That even if it is, the window to do so will be shortened by early menopause. When we looked to our oncologist for the percentages, the numbers of girls that escape unscathed by  this side effect, he returned with feelings of optimism that her prepubescent age may shelter her young ovaries. My kisses to her sweet head  come with the weight that her struggles won't end with chemotherapy treatments.
 


Comments

crystal roberts
02/02/2013 8:59pm

May god be with you all at this time. My heart and prayers are with you . I pray for healing for your baby girl.

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Dani Gronley
02/02/2013 9:18pm

My heart goes out to all of you having to deal with this horrible reality. Right before my 16th birthday I was diagnosed with ovarian cancer. I had surgery to remove my right ovary and tube. I had my first chemo treatment on my sweet 16. Mine was very rare and no one could tell me if I would be able to have kids. I am now 41 years old with 2 very healthy grown children. I am expecting my 1st grandchild in April.
Don't give up hope, sometimes it's all we've got. I think about Carmen everyday. Prayers and love to you all!

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Teresa Randazzo
02/02/2013 9:30pm

Jaci, your must be incredibly strong, and you must be for Carmen. I can't imagine as a mother writing and or living through this because reading it I cried. I pray for you guys daily, and thanks for sharing your journey with so many people, some you haven't met and probably never will. My kids are in awe with Carmen and think that she is so brave and love her new bald look..I hate cancer & I know god has an amazing plan for Carmen.

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Melissa Compton
02/02/2013 9:32pm

Your blogs are the most beautiful inspiring things I have ever read. To say I did not shed a tear would be an understatement as the tears that fell unwillingly became a sob. God bless you and your beautiful family...

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Conni smith
02/02/2013 9:42pm

My heart hurts for you. You can do this and you are showing your strength. I can't imagine the heartache love you and the girls

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Dawn munoz
02/02/2013 9:51pm

Jaci was reading this too my daughter Vanessa she is 19 and reads at 3rd grade level. This is from lack of o2 you see when I was pregnant I was pregnant with twins but lost one when we were in Mexico they wanted to do a DC but we paid for a ultrasound and there she was. after we got back to the States. they sewed my cervix closed and bed rest for 5 months. after are princess was born she stopped breathing they said if we weren't able to revive her it would have been considered SIDS we spent 3 months at the same hospital were you are at. they went over the risks but we couldn't know until she grew up. well now we know. it effected her brain and her learning abilitys. but as I read this to her my 19 year old says well mom if she can't I will have one for her she is my hospital sister after all.we are here for you just reach out and I will be there love Dawn

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Andi Gowin
02/02/2013 9:53pm

Beautiful searing words. The pain in your heart is evident. Tears flowing for you and Carmen.

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Jaci Garringer
02/02/2013 9:54pm

That's amazing, Dawn...my love to both you and Vanessa!

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Dawn
02/02/2013 11:52pm

on this journey my Dear friend you are going to have strength that you didn't know you had. you Will have so many emotions. But I am here to tell you are a amazing and I hope these simple words help you in some way even if it's so you know your not alone. Love your Amiga Dawn

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Lance Delo
02/02/2013 9:57pm

God bless you, your daughter, and the rest of your family. I can well imagine the courage it takes to lay open your life like a book and to bare your soul so intimately. It grieves me that your child (*any* child) must walk such a path, and it grieves me there is nothing i can do except to pray for you all. But that is what i can offer and it is my honor to lift you all to God in prayer...

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Lori Crowell
02/02/2013 10:19pm

Thank you for sharing your experiences. We hear the things you go through, we feel some of your pain, we pray for your heart, your health and your lives but in the end, we truly do not know unless you tell us. Your strength is inspiring. Your offer to cut your hair, well, I felt everything you said about what your hair means to you, yet you would give that up for your baby girl. You mentioned the scent that isn't right, the future of her ovaries, no more cartwheels.....thank you so much for sharing. God Bless you and yours.

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Darby Ryan
02/02/2013 11:50pm

My heart is so touched by your story and your courage. I will be fervently praying for your little warrior Carmen, and her healing...and for you as well, Jaci. Thank you for sharing the steps along your most difficult journey. You inspire. I pray that God's reveals His hope to you daily, and brings clarity to your mind and heart, with each decision in front of you. God's Blessings to your family...always.

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Jen Reeves
02/02/2013 11:53pm

You inspire me....I dream of being half the mother you are! Thank you for your candidness...thank you for making me bawl my eyes out...thank you for raising (and continuing to raise) such an amazing little girl, the world needs more moms like you! God Bless!

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Sandi Garringer
02/03/2013 5:49am

You and Carmen are amazing Jaci. As a mother I believe you did the right thing and she will too, prayers are sent to her and your family every day from us, you are both lovely ladies!

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Erika Abel
02/03/2013 6:41am

I am a 15 year survivor of a lymphoma and found that my gynecologist had cancer as a teen too (osteosarcoma). Unlike me, she was not expected to live and was told she would never have children (osteosarcoma). While in medical school she surprisingly became pregnant with the first of her 3 children. She is healthy and happy as a mother and physician. Jaci's horizon is still bright!

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Erika Abel
02/03/2013 6:42am

*Yikes-I meant Carmen's horizon. I don't know you guys but I am sending lots of love and prayers.

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Karen Fantozzi
02/03/2013 8:10am

I can see that Carmen's beauty and pose come from you. Thinking of you and your family as your continue to maneuver through cancerland. Sending love and hugs your way!!

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Jodi Davidson
02/03/2013 8:15am

Jaci, you are such an amazing and inspiring woman and mother. As I read your words I am brought to tears as you bare your feelings as to what Carmen ia having to endure. God has a plan for her and the rest of the family. I pray that he will surround you with love and lift you up in strenght. Stay strong and give her many kisses. Carmen is such a strong and beautiful young lady; with or without hair! Love you guys.

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Windy
02/03/2013 10:15am

Jaci, I am touched by your honesty and candid reporting. I held my best friends hand as she walked through Ewings osteosarcoma, and she too, took the reigns when it came to her hair. It was the only thing she felt she could control at that time, and it was very cathartic for her. I remember so many things from that time, so long ago. When I read your posts, my stomach wrenches for you and my heart feels for you. I remember feeling many things, but the hardest thing to get my head around were the toxins that were fighting to save her life. Of course, I can never know how you feel being the mother of a child with cancer, but please know, I am always happy to listen and help however I can. <3

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Karen StMartin
02/03/2013 2:01pm

Thanks for being so open and raw with your feelings/thoughts. When Nicole was losing her hair, I didn't have the heart to have her sit in a beauty salon and shave it off so I did it myself...my boys watched from the living room while her and I cried for this is what defines them as female. I think that was one of the hardest things to do. It's amazing the strength that they are given when going through this cancer journey and I know they will be strong woman for all of this. Your daughter is beautiful and I can see her beauty comes from mom....you have such a way with words. Hugs to you both.

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Michelle Solier
02/03/2013 2:46pm

It amazes me the strength and courage young children have when confronted with life threatening illnesses. Your words brought me back to 1997 when my daughter (then 13 years) old was first hospitalized with Diabetes. Type 1. Her strength and courage is what got me through. I stayed in the hospital with her while my husband stayed at home. He was torn apart with the prospects that she may never be able to have children, become blind and could possibly some day lose limbs. She on the other hand crabbed the first needle, to give herself that first shot of insulin. " see mom, that didn't hurt!" The road hasn't been easy. Diabetes is a part of her life and always will be. We have been blessed with two awesome grandchildren. Both pregnancies were terrifying, almost losing her a couple of times. Carmen reminds me so much of Sarita in her photos and the stories of her. Jaci, hang in there and take it one day at a time. 🌺,Michelle

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Rhonda
02/03/2013 4:58pm

Once again I am reminded of why I have such pride I. Calling you my daughter. Your strength of character is amazing. The words written here give us all a sense of the impossible road ahead for both you and Carmen.

She can not allow you out of arms reach. She like most children want their mommy. You give her the freedoms to be a child and she is brave as you have shown her is possible.

My deepest love to both of you. If I could trade places with Carmen I would.

Her Grammy and your mom.

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Lori Call
02/03/2013 7:32pm

Rhonda,
I'm walking in your shoes as I watch my son and daughter-in-law make those tough decisions for their 8 month oild son who is fighting luekemia. I didn't think it was possible to love my child anymore than I had his entire life but I am amazed everyday as I watch him fight this battle everyday for baby Luke. It is a double punch in the stomach to watch your grandchild fight for their lives and watch your child endure a parents worse nightmare. Hugs and prayers that all will be well for Carmen and all who love her.

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Michelle
02/03/2013 10:18pm

prayers for baby Luke!

Anita Maling
02/04/2013 2:10pm

When I read your words I am filled with such a mixture of feelings. Heartbreak and sadness that your beautiful girl and your family has to go through such an awful experience. But I also feel an incredible sense of hope for you because of our own experience with Ewing's. You are in good hands at Children's; my daughter and many other kids we know are now living normal lives, thanks to them. My daughter is now two years in remission and a happy and healthy third grader. That probably seems light years away to you now, but I trust it gives you some hope and comfort during the dark days.
It is heart-warming to see the love and support you have from friends, family, and community. Please know that my family too, would love to be of any help that we can. (Ava would enjoy talking with Carmen, if she is ever interested.) We have been reading along online and sending our positive thoughts and prayers your way.
Anita Maling

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Amy Anderson
02/22/2013 5:05am

Great news for Ava!!!! Sarcoma Survivors in North Kitsap!!!!

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Gloria Blankenbaker
02/04/2013 7:31pm

Jaci, I am sending prayers daily for your sweet Carmen. How amazingly beautiful and strong she is. Your blog is so expressive and the pain you feel is vividly evident. It truly sounds as though you are surrounded by a lot of love and caring friends and family. I am sure there are still many moments where you feel alone and everything seems so daunting, When you do feel incredibly exhausted from all that you and your precious family face, remember to close your eyes in faith and go to sleep in peace, as God is awake. Jaci, my heart is with your heart.

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02/05/2013 3:00pm

Jaci, My heart goes out to you, your beautiful & strong daughter, and the rest of your amazing family. My family prays for you all every night. I am in awe of your strength. From one mom to another, I want you to know you are an inspiration to me. If there is anything we can do to help or make things even a tiny bit easier please don't hesitate to ask. Take care. Justine

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Amy Anderson
02/22/2013 5:00am

Jaci,
I want you to know that I am Osteosarcoma FREE 27 YEARS today! I have 2 girls I was not sure I would ever have. I have lost my hair twice....never waited for it to fall out either. I still keep in touch with some of those special nurses....especially when I thank them today! Hang in there Warrior Mama!!!

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