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April 9, 2009

Thank you Jesse!

This post sort of ties in a couple of things that have come up throughout the course of Isa’s treatment. First thing, fungus. One of the reasons Papa & I wanted to move was the mold in our hometown. Everything is moldy in the town we were living. Second thing is the coming to terms with negative outcomes. Third thing is Flashes of Hope.

A community of people coming together to help the families of the cancer children by providing photos. During the time that we were there, I saw a  Flashes of Hope picture that had been turned into a carrying bag. It was small and I couldn’t see it so well. Today I had a chance, up close.

As we waited for Isa’s regular appointment I saw two women sit down, place their handbags beside them. As one woman walked into the back, the other sat there. As most parents or grandparents do in the waiting room she had a faraway look. Me, being nosy and curious wanted to see the bag because I thought it was the one mentioned previously. Indeed it was. The woman with the faraway look was Jesse’s grandma. The wet tears flowed as she said, ” Yes, this is my grandson who lost his fight on December 26, 2008.”



At that point, I couldn’t say anything to her because I was too afraid to sob in front of a packed waiting room. I simply reached out to pat Isa’s leg as the pictures on the bags stared at me.

A woman, with a recently shaved head, most likely for a St. Baldrick’s event, came out from the back. She was the woman in the photo. She was Jesse’s mom. I composed myself long enough to tell her that I was so sorry for her loss and that I’d like to read her site.

I’d also like all of you to take a minute or two to look over it. Cancer isn’t the only thing that kills these kids. It is the treatment. From chemotherapy to antibiotics to blood and on and on, anything can happen. Jesse died from a fungal infection in his lung. A simple mold that grew uncontrolled until it had damaged his lung so much that it could not be treated. His system was blown out from a recent high dose of chemo.

Jesse was diagnosed in October of 2005. Theoretically he was almost done.

Also, if you’ve been following Jaymun’s story, I got an email from his dad today stating that he had blasts in his CSF. Jaymun was diagnosed at birth, that was several years ago. He has an updated post detailing the experience.


People, this isn’t over until it is over. I respect that some people prefer not to think about these types of things. Even with the impressive rates of survival and cure. Children are dying from these diseases everyday.  To think that it won’t happen to me is to be naive. To only focus on the death would be morose. To use my brains, my resources and my love for Isa to provide her with as many opportunities to survive, that is smart, albeit knowing full well what could happen.

4 Comments leave one →
  1. April 14, 2009 4:41 pm

    I probably sounded like the biggest jerk (to put it lightly) ever when I wrote a post telling people not to come over and see me when I was sick, but I will never regret writing that. I wrote that post for exactly the same reason as what happened to Jesse with the fungal infection. I have listened to the story of a guy with cancer almost dying from a simple cavity during chemotherapy. The cancer didn’t weaken his immune system, it was the treatment (chemotherapy) that weakened the immune system. There’s some stories people have posted on testicular cancer forums of ending up in the hospital as an in-patient three times simply due to a low white blood cell count and being careless about hygeine.

    Isa’s WBC is very low. I was getting yelled at when I was a 1.X WBC by the chemotherapy nurses to wash my hands, don’t eat lettuce, don’t bring home flowers for valentine’s day, etc. etc. 1.x WBC is probably lower than mine was in my darkest WBC days (high 1.Xs). It was hard enough for me to remember to be obsessive compulsive about washing hands, wearing masks, and cooking food until its burnt. All that OCD wasn’t enough to keep me from landing in the hospital from a gastro-intestinal flu. I can’t imagine what it’s like to have to constantly be the vanguard for Isa from the same.

    There is a shot of neupogen or neublasta (sp?) that can up your WBC quickly. Either is not fun, I do not know if it is an option for her, maybe could help…I had to ask for it specifically too.

    • April 14, 2009 8:56 pm

      Nice to have someone who understands commenting. Thank you.

      Thanks to Jesse again for what he is doing for us. Reminding us to keep it clean.. as it were. Fungal and viral infections are life threatening. One of the reason I was so shaken up by the blood. Even though it is irradiated I still had a concern. Now that being said, I don’t go around washing everything all the time, until, well, two days ago. Some other kids were around and played with some of our toys. So I washed them with alcohol. But does that do the trick? So I found some anti-everything wipes, like they use in the hospital.

      As I type, I just heard my eldest daughter sneezing. What do you think runs through my mind when I hear that? Can’t keep that from happening. No matter how much I tell them to wash their hands, or wash my own hands. I have no idea where this stuff comes from. I just read on a forum that the parents noticed that the platelets actually went up when their leukemia kid had a viral infection.

      Isa’s counts go up and down relatively quickly. So ideally by Thursday they will be back up again. Her ANC is what we typically use to determine where we go and what we do (no where and nothing.) As far as neupogen (G-CSF) I know that it is sometimes given to leukemia kids, but I haven’t looked into it yet. I have been taking a few days off from the cancer factory.

      So just in case you didnt’ notice that link above…. I am sending you there to check it out again. Yeah, what he said.

  2. Anonymous permalink
    April 10, 2009 8:20 pm

    That was beautiful.

  3. Kelley permalink
    April 10, 2009 10:50 am

    The title of your site rolls off my tongue like the lyrics to It’s A Hard Knock Life. I like it because it has a positive reminder that things do work out!

    I can in no way, shape or form come close to comprehending your situation. I can only admire your strength to fight. I can only offer what little I can….. I have blocked my own fight with health out of my head and said good riddance as I move forward. Looking back, I should have reached out and told the whole world. By telling the whole world about Isa, you are adding to that positive cosmos of good energy that surrounds and will, by its powerful goodness, fight to heal your little girl.

    Even in your darkest hours, reach deep inside your mind to recall all those who are pulling for you, rooting for you and loving you all.

    In the short time I come to know you in the present time, you know that I have fallen in love with your family and think the world of you. I cannot offer much in terms of help except my time — I am here if you need me. And so are Samantha, Toby and Dennis. Puddles, Miss Janey Pickles and Lulu are always ready to avail their fur for a good petting should you need an anonymous ear!

    Head up, Chest out, and Keep Marching — You’ve got a important part of the world to save!

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