Monday, June 17, 2013

Leukemia - Maintenance Week 14 - I'm Scared

So often I receive comments and emails regarding Jemma's Leukemia that tell me how strong I am.  This blog may make me look strong, but that is far from an accurate picture. First of all I do what I have to do. I do what any parent would do in this situation, but that doesn't make me strong. I have tons of anxiety. I am human.

Right now everything is fine, but it has been a difficult three days. When Jemma first got sick, even before she was diagnosed she had a very distinct way of breathing. She would shorten each breath with a sort of grunting sound. As she got sicker, she grunted more frequently and eventually all night long while she slept. The grunting went away a very short time after her chemotherapy treatment began, and I haven't heard it since.

Until three nights ago....... While I was reading her a bedtime story I heard it. She didn't do it while sleeping and seemed happy and full of energy in the morning so I passed it off. The pattern repeated itself for two more nights and then this morning Jemma took a nap in my arms. This may seem like a normal parent/child behavior, but it is far from normal for Jemma. I can count the number times this has happened on one hand and can't remember the last time. Jemma is not a child who likes to cuddle.

My mind has been racing with worry, so today I brought her in for a blood check even though she wasn't due to be checked until Thursday. The doctors were very nice and entertained my distress. Jemma was given a blood test and her blood was smeared onto a plate to be examined under the microscope. Thankfully everything was normal.

Swimming three days in a row, coupled with two dance practices and a quick performance is probably the reason for Jemma's low energy. I felt tired today and her sister went to be two hours early last night. She was thrilled to dance in front of a group on Sunday morning.
The grunting is harder to explain. When she first had Leukemia, many of her organs were enlarged which created pressure on the diaphragm and could have caused the initial grunting. Her organs were normal today, but her stomach was filled with air. Her appetite has increased again, so perhaps her grunted breathing is caused by an extra full stomach.

My logical brain tells me don't get too upset and jump to conclusions, but for me that's very difficult to do. Apparently, it's very common for parents to have increased worry during this transition phase when the chemotherapy is being so drastically reduced. I have been a mess emotionally. The doctor's visit helped me to relax a bit, but whenever she makes that sound it just makes me cringe.


  1. I can understand your anxiety, Julie. As parents we worry about our children all the time, and in your case you definitely have more to worry about. I think it's very prudent of you to be so alert to the slightest changes in Jemma's condition. It's been an incredibly difficult journey, and all of you have shown a lot of strength just to keep going. Keeping all of you in my thoughts.

  2. I'd be scared too Julie, and can only imagine what you are all going through. Even thinking about such illness makes my chest feel tight. But I do think you are strong, and the way you have responded and supported Jemma is amazing, paying attention to all the little changes and getting them checked out. I think of you all often, and will hold you in my thoughts xx

  3. You kept on keeping on. In my eyes that is strength. Yes, maybe most mums would but that doesn't make it any less courageous. When a person has just heard news like cancer they look to the people who have gone before them, walked in the soon to be their shoes. When they see it is possible to get through and manage they are able to hope that little bit more and hold up their own head that little bit higher.
    One can still be scared, still cry and still experience a crippling anxiety and yet, still be strong.
    It must be painful to share at times, but I'm betting there are many parents out there who are thankful you do.


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