18 March, 2012

From Kasie

Thoughts from me:

So I thought it was about time I shared my thoughts with everyone. Bob has his blog and although he doesn't update too often he always shares when there is something to report. No news is always good news, and right now things have been ok. We've had a crazy month of ear infections, colds and wheezing but after lots of different antibiotics and a nebulizer we are finally on the mend.
Overall things are going smooth. We've got our clinic appointments planned to a T, his med schedule runs like clockwork. We know what days he will have his steroid outbursts and his endless hunger patterns. School has been going well but to me he's seems so much older than his peers now. I feel like he's lost part of his childhood dealing with such an adult thing. He gets frequent headaches and complains that he "doesn't feel like himself". Really breaks my heart. He tires easily and that frustrates him. We went to a birthday party today and as I looked around I teared up, out of jealousy I thought, why him? It's strange because I can talk about leukemia, I can answer any questions about Robert and not get emotional. It always hits me around other kids. I'll be in his classroom, look around and start to cry. He'll have a friend over and boom I'm a mess. Strange.
I've heard a lot of bad news lately from friends of friends about kids with Roberts exact same diagnoses relapsing. There have been three in the past two weeks. All finished with their years of treatment, all post port removal all several months off treatment. Very scary to think about. We often forget that what Robert has comes with lifelong repercussions. Will it return? What long term side effects will he have? What problems will he have when he's older? Can he ever have children of his own? In 2 1/2 yrs he will hopefully get "cured" status but it will never end for him there. Everyday I look into my precious child's eyes and wonder how he does it. He is so brave and so strong and so mature. We were discussing what he would like to choose for his upcoming make a wish and he said "can I wish for my leukemia to go away?". Wow. I wish buddy, I wish. Since that isn't possible he then asked if his wish could take him to see Santa in the north pole. Ummmm.....talk about thinking on your feet! I quickly explained that Santa doesn't allow civilians at his workshop. Strictly forbidden. So, I think he's decided on Disney world.

I read this on a blog the other day and felt it hit the nail on the head because most days I too feel like an egg.

"Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.

An egg has a polished smooth outer appearance with no cracks or weak spots ......visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.

That is where parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.

Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again."

by Juliet Freitag

So very true. Please keep Robert and all those children with cancer in your prayers tonight. It's a lifelong journey for them and their families.

03 March, 2012

Made it home

A viral infection is the culprit.

Emergency Room

Robert had a high fever and had to go to the emergency room. Hopefully his counts will be high enough that they send him home after treatment.