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Long Days

June 30, 2009
Get in the car girls.

Get in the car girls.

About three or four years ago, I sat on a restaurant patio at a round table with my three children and my husband. Because the children were little, I spent a lot of time answering questions from the oldest, holding the baby (Isa) on my lap, likely she was nursing. And trying to the keep the middle child’s food on the table rather than on her or the floor. All while conversing with my husband. Or at least trying to do so.

When a small, frail, older woman approached our table, I scooted my chair over to make room for her to pass, but she was coming directly toward me. She simply leaned over put her hand on my shoulder and said, “The days are long, but the years are short.” Then she patted me and walked on followed by her husband.

For me, she uttered the most poignant words of child-rearing wisdom to date.

Some days seem to take forever.  Evening falls as I scream about picking up the toys, brushing teeth, and whatever other calamity, because everything is a crisis, happens to befall us that day. I hope that the next day will be better.

But when I realize that the tiny toes I kissed  fresh from a bath are now enveloped in leather basketball shoes, I wince. When a child I carried, first inside my body and then tucked tightly in a sling, asks me if I am okay, when I say ‘ouch’, I realize the passing of time. When the child who was once swathed in a handmade-lavender-rose-printed blanket is now asking for it with clear and concise words, I frown & smile at the same time, often accompanied by a tear or two.

We started the process of leukemia treatments in January 2009. That was six months ago.

The days are long and the years are short.

For nearly every week since January 14, we have taken our daughter Isa to her chemotherapy treatments. Some weeks we made more than one trip. One month we had a three day hospital stay. As we embark on the next phase of the journey I’d like to share what a typical day looks like for us.

You may click on the photos to enlarge them.

When I look at these photos, I don’t notice how skinny she is, or how sad it is that she screams. These things I see each hospital day. What I notice is how Papa and I could use a spa day—massages, facial, hair cuts, the works. We look beat.

When you ask us how we are we don’t explain that each week we have to hold our daughter down, we say, “Fine.”  Or, “Some days are better than others.” Sometimes empathy requires personal experience.

These photos give you a peek at what we do. For some of you reading this, these things will become your life. For some, this was your life. For others, you can’t even imagine this being your life.

The procedure highlighted is a lumbar puncture. In this procedure they procure spinal fluid for testing and inject intrathecal methotrexate. The bone marrows are similar except that she lays face-down not curled up.

In addition to all that you see, she also had Vincristine and Methotrexate and Zofran injected into her port.

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26 Comments leave one →
  1. October 19, 2009 7:02 pm

    Stopping by from SITS. That is a really great quote, for all the things life throws at us. Though it looks like you’ve had an awful lot thrown at you! Sending kind thoughts to you and your family.

  2. September 26, 2009 8:38 pm

    You have such a beautiful way of expressing your thoughts. I cannot imagine how this all must feel for you and your family….looking at the pictures brought tears to my eyes. And yes, it’s so true that the days are long but the years are short. So very true.

    Thank you so much for stopping by my blog…I hope you’ll be back again soon!

    • cheflucien permalink
      September 26, 2009 10:03 pm

      Thank you for the kind words. This whole experience as made us closer, feel more human and appreciate the time and days we have together.

      CL

  3. August 22, 2009 6:30 pm

    you are so right when you say ‘this WAS your life’ or IS, or ‘could be’ – and we just never know. you are all so brave, although some days you probably don’t feel it! here from sits

  4. August 2, 2009 12:03 am

    wow! I’m coming over from the sharefest and wow! You are a strong and inspirational woman! Your words are organized so beautifully and your pictures speak a million words! Thank you for sharing a glimpse into your life! I’ll say a prayer for you and your family! I hope things get better soon! 🙂

    • August 2, 2009 12:08 am

      So surprised. I really did think I’d be the last one. Love the Sharefest idea that the SITS girls got going on! Thanks for the kind words!

  5. July 8, 2009 12:07 pm

    I can see now why you need to take long slow breaths every day. You don’t need to experiment with the panting breath, life has given you enough to gasp about already. Long, deep slow breaths like Anne has said will be the most healing for you. I like to try this visualization too when my back is acutely hurting:

    Sit quietly and comfortably for the next 10 – 30 minutes. Slowly become aware of your breath by slowing the inhale down and thinking to yourself…. “I am breathing in healing” Then slowly exhale thinking to yourself… “I am letting go of pain ” Continue with this for at least 10 full breaths.

    Now begin walking down a wooded path in your mind. Picture the trees, the sounds of birds, the smells of the forest. Let each step be a breath in and the next step a breath out. Finally find yourself at a small stream. Have a seat on the perfect stone that is waiting for you, and drink in the sounds, feelings, and sights all around you. Just focus on the stream and let your breath regulate and settle into a washing-over-you rhythm of breath. If the pain is apparent in this moment picture it as something heavy you have been carrying in your bag on your back and set it down next to you or place it in the stream to be washed away. Let it go if you can and continue to focus on your breath. When you are ready, slowly stand up and begin walking back up the path with your deliberate inhale step and then exhale step. Each step is a return and a renewal to healing.
    When you are ready, slowly open your eyes to a softly focused gaze and come back into this moment. Recognizing just as your post pointed out… it is a beautiful moment. Not worrying about the moment before or the one to come next but recognizing that this moment is perfect.

    I wish you peace and many many healing moments for your entire family and especially for your children.

    With warmest wishes,

    Jan

    • cheflucien permalink
      July 8, 2009 12:14 pm

      Thank you. We do deep controlled breathing as a group often. In treatment, when Isa is getting upset or uptight, I tell her to take a yoga breath. She takes a big breath in through her nose, pulling air below her navel and exhaling slowly. She relaxes.

      Thanks again for some more techniques.

  6. July 8, 2009 10:09 am

    what a very sweet and touching post. i am not a parent, so i can not even come close to understanding how you and your husband feel.

    i am so very glad you shared that woman’s words, i often forget to not get so wrapped up in the day to day annoyances.

  7. July 7, 2009 11:58 pm

    Reading this makes me cry. Really….Cry. I started reading this post and started crying before I even knew what you and your little girl were going through. The days are long and the years short. I cannot even imagine what you are going through and my heart and prayers go out to you. But also thank you for reminding me of what is so important. I leave for work everyday wishing I didn’t have to leave them, and I just realized that I don’t and I am not going to miss them growing up anymore. It must’ve been a combination of my emotional state and reading your post that has ended my inner struggle that I have been having for the last year. I found you because you commented on my blog and I am SO glad I did. I would love to help and wish I had money to give, but I do have some nice clothing that my daughter has grown out of if you are in need of anything like that.

    • July 8, 2009 12:03 am

      And people say, Cancer sucks. Without it, you might have missed a few more months of your DD. Thank you for your energy. Just keep us in your thoughts, but now that you’re home, you could have fundraisers!!! Thanks for the visit, share the link and send us some traffic too. Just today, another cancer family found us. They say there is strength in numbers. : )

  8. July 7, 2009 10:12 pm

    Love that quote, praying for your family.

  9. July 7, 2009 1:20 am

    We started ALL treatment in May of 08. Went into maintenance in March. Two suggestions for peg shots. See if they can give them while she is out for her LP. Megan’s last peg med was given through her port. They have been changing some protocols in regard to those.

    Megan just turned 12 and the peg shot was her worst experience.

    May God bless you in this journey.

  10. July 2, 2009 10:36 pm

    If I could give you the gift of a week by the seaside with hammocks for napping, I would.

  11. July 2, 2009 3:23 pm

    Great post, and I love that quote!

  12. Linda J. permalink
    July 2, 2009 11:28 am

    It makes me cry to see these photos. Part of me is just amazed at how big the girls have gotten, and I think about how nice it would be to get our kids together and play–all that normal stuff. But it’s all juxtaposed with the feelings of sadness and anger about how wrong it is for Isa and all of you to have to go through this. I think of you so often, but am so bad about letting you know.

  13. rutledge permalink
    July 1, 2009 7:10 am

    One thing I keep thinking when I read your posts is that in this trying, confusion, you have discovered your artistry. baby = you are a writer through and through. Also I can’t believe how little Isa looks. It’s like a mini Isa. I love y’all and thanks for sharing all of this weird journey with folks like me.

  14. June 30, 2009 6:23 pm

    “When you ask us how we are we don’t explain that each week we have to hold our daughter down, we say, “Fine.” Or, “Some days are better than others.” Sometimes empathy requires personal experience.”

    Damn straight. It’s hell on everyone. To think that you’d have to bring home poison to inject your child…That’s another one that gets me.

    Alyson starts the screaming during the cleaning part. When we were stuck at the hospital forever, the access happened weekly. Pull it out, clean it off and put the next needle in. There was no time for EMLA and no time for a scab to form prior to the alcohol. And you can’t even blow on it for fear of bad breath germs.

    I’ve been trying to get John to come to a PEG shot. Just to see what we have to go through. To see what she has to go through. He hasn’t been able to come with us to Clinic in at least 6 months.

    Possible helpful thought: Don’t let her watch. If Alyson watches the needle go in, she imagines more pain and the screams are louder. Bradyn tries to distract her with funny faces but it doesn’t really work.

    DI #1 still starting this week? I’ll be with you in thought, believe me.

    (Would love to talk for real, shoot me off an email?)

    • cheflucien permalink
      June 30, 2009 6:59 pm

      Thank you. I feel that we are lucky to share this experience as a family every visit. When it is too much for either Mama or myself we are able to check out for a minute and calm down while the other takes care of business.

      A few things I have learned and repeat often is:

      1. Don’t sweat the small shit.
      2. It ain’t over until it is over…and that is not the out come we are looking for.
      3. Cherish everyday. The worse day with Isa at the hospital is better than a day without her.

    • June 30, 2009 8:55 pm

      Yeah, what he said! Here they have “freezy spray” which we have used a couple of times. It seems to work. She actually screamed less one time that we forgot to use anything at all. Go figure. Her last Peg she crawled into the corner and said, “stupid doctors” meaning the nurses.

      Thanks!

  15. June 30, 2009 3:45 pm

    Wow. I couldn’t imagine. Thanks for giving us a peek into your life. I’ll keep your family in my prayers.
    Stopped by from SITS to say hello 🙂

    http://www.themahoganyway.blogspot.com

  16. June 30, 2009 10:47 am

    I’m at a loss for words, just wanted to send you some love and a big tight hug.

    Be blessed, I know that I am!

  17. Anne Wolfe permalink
    June 30, 2009 9:40 am

    I had no idea. I am sitting here with tears pouring down my face and I know I’m to squish my toddler a little too hard when I pick her up today. You and your husband are bad ass, too.
    No need to reply. Take a minute to try this yoga pose instead. I’ve been trying to do it everyday, and it’s good. You lay on your back on the floor or ground with your arms loosely down, palms up. Close your eyes softly and try to relax, really relax. Even if it’s only 60 seconds that you can’t really spare, and you’re surrounded by noise and chaos when you do it. It is the hardest yoga pose, seriously.

    • June 30, 2009 10:16 am

      Anne. Thanks for your energy. It will go to good use. And it is so funny that you are giving me yoga. My back hurts so bad I have canceled clients and will be seeing an bonafide acupuncturist myself in about an hour. I will MOST definitely try that pose. Also, check out some of the other parts of the site. I will be making a ‘TOP POSTS’ Page or post so send me some suggestions. Spread the word. Post the site on your FB page or what not!

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