Chemo Monday and a Big Realization...

Today was chemo Monday. Jenson is a trooper. He's already made friends with all the nurses and doctors at the hospital. They all know him by name and all love him already ... really what is not to love because he is soooo adorable!

I really like our new oncologist. She's very good with Jenson, with Doug and me, and also really connected with the latest research on histiocytosis and even keeping up to date on other GI cases. She already discovered he was having issues with iron absorption with the liquid iron thru his GI tract so started giving it to him on Thursday's via an IV drip thru his port so it would go directly into his bloodstream (Doug has taken him the past 3 weeks - it's takes 1 hour for the iron drip treatment alone, so they both deserve serious kudos). He does have more color in his face and his counts on hemoglobin looked better this week. She did say we need to do a GI scope again soon because something seems to be causing him to not absorb the liquid iron via his GI tract and she would have liked to see his hemoglobin counts go up even more by now.

Then I asked the question...the question I probably should have just kept to myself but felt the need to ask for some reason today. "Assuming he doesn't get worse, how long do you think he'll still be on chemo?" Her response was "at least one more year assuming things look ok in the GI tract".

Whoa. At least ONE MORE YEAR. Why did I even ask that question??? That would make it 2 1/2 years at best case before he'd be off chemo. Yet another year of chemo appointments, fear of infection, isolation for Jenson from other kids (unless we know from their parents no one in the family has been sick), germophobic precautionary measures everywhere you go, ER/hospital visits with any fever, etc.

I'm pretty devasted today and am flooded with emotions. I'm sad for him that he has this illness. Really sad. This crazy disease. I really hate it.

But Jenson isn't sad, and he certainly isn't feeling any different today than any other day. He's a happy little boy. He once again is my inspiration and little teacher in life. He's excited about mommy, daddy, Sydney, grandmas and grandpas, yogurt, his bunny, Yum-yums (his word for french fries), crackers, dancing, brushing his teeth (yes, he loves brushing his teeth), doggies, Elmo, swings. I could go on, but really I've said enough. Jenson is excited about the life he has and is living for the day, just like God instructs us to do.

And we all need to do the same...

Kristin