Ziggy Jones

So, tomorrow we return to Texas Children’s for Iffy’s cat scans.  We’re going to see just how far the disease has progressed, and how best to attack it.  We’ve been here before, but I hoped we wouldn’t be here again.

Iffy has Non Hodgkins Lymphoma.  To add to that, he has a rare form named Rosai-Dorfman Syndrome.  When he was diagnosed back in 2004, he was one of four people in Texas.  Suffice it to say, he was the only child. But God saw fit to bless us with a pediatric oncologist, who just happened to be the leading expert on this new strand.

Thus began Iffy’s journey as the guinea pig and poster child.  We took pictures and documented every step so that said oncologist could present his findings to the world, and hopefully help others with this rare cancer.  But Iffy’s body wouldn’t cooperate.  What seemed to work in other patients, failed in him.  We start off promising enough, but in the end, nothing seemed to work. We’ve been through every type of cocktail you can imagine.  Steroids, mainly Predinisone, are not my friends.

Kameron was along for most of the journey.  When he wasn’t in school, he was right there with us.  Observing everything, absorbing it as well.  He really doesn’t talk about it. But then again, Kameron doesn’t talk about much.  He did offer his blood for transfusions, and his bone marrow.  Thank God that wasn’t necessary.

Here’s the deal Iffy and I made.  When he starts on this new drug, Cytarabine, next week, he’ll have the nausea and vomiting and lose his appetite.  He’s used to that, believe it or not. But he’s not excited about losing his hair again. So, I’ve decided to cut my hair along with him.  Told him we’d be bald together.  He smiled.

This treatment won’t be near as rigorous.  At one point, Iffy was going 5 days a week.  We would be there from 9 in the morning until 5 in the evening.  It was a job. This time, he’ll go Monday, Tuesday, and Wednesday, one week a month, for the next six months.  If the treatment takes.  If his body rejects it, we’re back to square one.

Mama’s going with us, because I can’t be in the room with him when he has the scans because of the baby.  Not too happy about that, but Iffy got angry when I suggested I go in anyway.

“Take care of my sister, Mama. Seriously.”  Can’t argue with that.  I don’t have the strength.

I’ve heard that God would never put more on you than you can bear.  Dear God, please, please, no more.

Bring it on

Tags: Lymphoma, Non Hodgkins

This entry was posted on Tuesday, June 22nd, 2010 at 2:36 am and is filed under My Life. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.