thecookiegal

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This shouldn’t be Normal

Julia was having a rough time this morning. One that only a 2 year old can understand!  There was nothing “wrong” with her, she wasn’t hurt or hungry. Her diaper was fine.  Maybe she was just tired?  Maybe she was upset because I was going upstairs and leaving her to play with all her toys?  I don’t know.  But what I do know, was that she was crying many tears, and was just really sad.  I thought about what it would be like if she was sick, really sick, like Alexander had been.  How hard it would have been to hear her say “no” to the shots, the lines, the chemo, the x-rays.

Alexander was only 8 months old when he was diagnosed.  The day he was diagnosed he recived an IV, and his arm was tapped to a board so the line wouldn’t come out.  He had monitors attached to him, and he had people poking at him day and night.  He would eventually get an NG tube shoved down his nose.  When the doctor first told us about it, he said “It only hurts for a minute”.  I said to him “oh, so you have had one?”  I think the doctor knew right then and there that we were not ones to be messed with or told some fake words of “comfort” to get us thru!  We wanted to know the truth when it came to what would happen to our son.

Alexander  never said no to anything we did to him. He never said why me mommy?  He didn’t say anything because he never talked.  Not one word – not even mama or dada.  Before he was diagnosed he did do some babbling, but after, it stopped.  We never knew why.  Maybe it was the tumor? Maybe it was the feeding tube?   I am sure he would have cried and screamed if he could have.

But, really, he just accepted things. He did fight me when I had to drop the NG tube, but other than that he really just did what needed to be done.  I actually find it sad really.  At one point, he was having x-rays 2-3 times a DAY to check on the status of fluid in his belly.  He had to sit on a little block, and I had to hold his hands up over his head.  He just let me do it.  He didn’t fight me.  He had multiple ultrasounds. Again, he didn’t fight it.   I had to give him daily shots after chemo.  He cried, but didn’t try to run away from it.   It was all just normal to him.  It was part of his life and he seemed to have learned to have accepted it.

As hard as it is to hear Julia and Elizabeth Cry and fight me when they are sad, or need medication, I will gladly take it.  Because to them, it is an unusual not normal thing.  I pray that they will NEVER have to have medicine, x-rays, or shots become “normal” to them.

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Giving Poison to heal.

There was a great article today in the Globe.  It focused on one of children we knew – Alexander’s “girlfriend”. It talks about the stress families go through as they make choices to help heal, hopefully cure their children.

http://www.boston.com/lifestyle/health/articles/2011/05/09/as_a_child_undergoes_treatments_for_a_serious_illness_parents_may_suffer_too/?sudsredirect=true

When Alexander first got sick, someone asked us, “So what exactly is Chemotherapy”.  I resisted the urge to smack this person for asking such a question to us – I mean, couldn’t they have looked it up themselves? A textbook answer would have been this (from about.com)

Definition: Chemotherapy is a form of cancer treatment that involves taking one or more of a type of drug that interferes with the DNA (genes) of fast-growing cells. These drugs are further subdivided into specific classes such as alkylating agents, antimetabolites, anthracyclines, and topoisomerase inhibitors.

My answer:  “It is Poison”.   We choose to give our son poison – poison that we hoped would kill the cancer cells, shrink the tumor and get us back on track to the life we planned.   We had to sign consents for everything – and more often than not, under “side effects” one of them was death.  Death?!?!  You mean to tell me, if I DON’T give my child this treatment, he could die, but if I do give it he could die?  Um…hello!?!?   What kind of choice is that?   Not an easy one at all.  We did choose to give him treatments.  but what if we hadn’t?

Recently in the news was the conviction of a mother that did that – she choose NOT to giver her child the treatments the doctors told her could save his life.  Of course none of the news stories tell the whole story.  Why did she stop the treatments?  Had she reached her wits end in seeing how sick they made him, loosing hope that he would truly get better?  Where was the help for HER, to give these treatments to her son.  Some may say, “just MAKE him take it” – well , that is easier said than done.  Alexander was too little to fight us, and he had his feeding tube which made it so much easier to give him his medications.  But just the SMELL of some of these medications made me gag – I can’t imagine having to take them every day.  At one point, he was taking them orally, but kept throwing them up, so I had to put the feeding tube back in just so I could give him his medications.  That was hard for me.  I learned how to do that, so that I didn’t have to keep taking him to the ER to have it done if it came out.  I didn’t want to learn that – what mother does? But, it was something that I choose to do to help him.  There were times that I had to give him shots in the leg every day.  I hated that – having to give my child pain!  Again, because of his age, he couldn’t really “fight” me – although he tried!  Some of the other children who are older, will kick, scream, say “I hate you, you are bad”.  There were many a time I wanted to NOT give him his medications or treatments because of the reactions he would have.  Sometimes, I was actually GLAD we were in the hospital, because then the nurses would do the “bad stuff” and I wouldn’t have to.

Since I do not know the whole story – I can not judge that mom.  I can only pray for her and the life she now has to face without her son.  I am sure she did not come to her decision lightly.  I do question where the doctors were in her situation – how did they not know until it was to late that he wasn’t getting his treatments?  And couldn’t they see the stress she was under, and how she would need some help?

Cancer sucks – the treatment sucks – there are no easy answers.

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