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Long Road

March 29, 2009

My friend just asked me how I was doing, and it is such a hard question to answer. We have a long, long road until we get to the end of treatment. Then after the chemotherapy stops we have monthly check ups for the first year afterward. And every year after that, more and more check-ups. I like to believe that she will survive, but still, within five years my daughter could be dead. It is a fact. With her Standard-High risk, I wonder if she has a higher chance of relapse.

How do I balance treating her like she is going to live, like, making sure that she keeps up with following the rules, treating me respectfully, learning her ABC’s etc.. with the fact that I just want to sit around and hold her, all day long. Not force her to take medicine. Not take her to get spinal taps and blood transfusions.

But, back in the present, leukemia has changed our lives in so many ways. Some of them subtle and some of them obvious.

Thanks to everyone for continued prayers and comments on the blog. They are there to discuss the posts. Feel free to interact with the material.

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11 Comments leave one →
  1. DAWN CROXTON ONGKIKO permalink
    April 9, 2009 9:09 am

    Thank you for your post(s)!

  2. Terri permalink
    April 2, 2009 8:54 am

    Hello fellow Leukemia Mom. My son James is now 6 and 15 months into long term maintenance for ALL. My heart goes out to you during these times. If it was not for my faith in God and in an eternal life, I would not have been able to make it through where you are now. Just know that after delayed intensification your daughter will return to her normal self, within a few months. Life will get into a normal pattern. Chemo therapy just seems to become a normal part of life. The steroids are the worse of it, during long term maintenance, but they are just for 5 days every four weeks. I just cherish every moment with him. I try to fight the what if thought and live in the moment. I do not worry about the little things anymore. It has helped me to talk to other parent of children with cancer and disabilities. I start to relize that maybe we are not so bad off. My prayers go out to you, and your family. May God give you strength!

    • April 2, 2009 4:03 pm

      Thanks again for commenting. Connecting with other Cancer Moms and Dads has been such a boon. So glad that you found something to get you through the tough times. Isa will have the steroids for five days during the maintenance as well as, Vincristine once per month, methotrexate once per week, and 6 MP everyday. Everyone has said, “Oh, wait until delayed intensification.” Thank you for your prayers. I will also keep you in mine.

  3. April 1, 2009 12:20 pm

    It’s funny – you wrote spend the time in the present moment – that’s exactly what this blog does for me. It brings me into the now. I was so tired and frustrated with Rowan today and I pulled up this post, read, cried in the shower, and then Rowan and I snuggled and played until I put him down 5 minutes ago for his nap. when I cry in the shower I begin crying for you, but when it turns into sobs it’s for me. the sobs are about my fear of leaving them. That’s the cross I bare from Mom leaving me. I guess I should feel selfish, but I don’t. I feel glad that I read this today. Thanks.

    • April 1, 2009 2:31 pm

      Are these comments pay back for these posts making y’all cry. I am all Tears and sniffles. Your response had me crying too. It has to freak the kids out. Sort of like, “mommy, why are you so nice?”

      The only point of Power is in the PRESENT moment, because the past DOES NOT EXIST except for in your mind. The future has yet to come. There is only the NOW. This of course does not mean that you can’t plan for the future, it just means that the decisions made RIGHT now, have the most impact. The choices we make are based on the moment. Not on what you THINK 20 minutes, 4 weeks, next year or even 10 year from now are going to be, because you can’t. So, when Rowan drives you crazy you have choices. It seems to be that when kids are bugging they do leave you alone when they get focused attention. The best choice for a good afternoon!!!

      • April 1, 2009 8:44 pm

        I didn’t mean for it to be an ouch.

      • April 1, 2009 9:51 pm

        I updated the post. I meant that your comment sparked tears in me too. I’ve even had people telling me what an impact this post has had on them this week. I hope it continues. Life is very good.

  4. Deadra aka Demie permalink
    March 30, 2009 10:45 am

    I dont know what to say except that I think of you many, many times every day – – keep doing what feels best to you and trust your instincts – there must be a balance in there somewhere. If there is a degree of peace and happiness in your home you must be doing something right… – love you – D

    • March 30, 2009 11:11 am

      Thanks for your thoughts. This post was more to get people’s attention, I spoke of how cancer brings people into the NOW, and no one can understand. I write that she could die, and people respond. What I’d like to say to all the parents, is that your kid could die too. It is just that mine has cancer, and her possibility of crossing over is apparent. So spend the time in the present moment. Additionally, talking about death in our society creates tension in the listener.

  5. Natascha permalink
    March 30, 2009 7:05 am

    I guess, I see Luke as another part of your journey in life. Why do you continue with the ABC’s and the other daily parts of growing up — it’s something else to focus on when you could be completely consumed by this MONSTER… Yes, she is having this awful thing that she’s (and all of you) are dealing with, however, she’s still just a little girl who if physically possible, should be doing little girl things.. Playing with Barbies, in the sandbox or playground, watching kid movies, etc. This Monster shouldn’t steal her child hood — even though it has the power to take her from you…

    That is why you do what you do…..

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