Monday, February 22, 2010


Why is this hard to believe.  Why am I here.  Questions that come around every once in awhile as I sit waiting for the IV team.  I feel so blessed to be here, but at the same wish I wasn't.  Our clinic appointment was, well we were admitted.  Gary's opening sore he has under is arm is progressing quickly in my opinion.  I don't mean to make it out more than it is, but any hole in your childs body seems really big.  The doctors have been discussing Gary quit a bit in there Thursday meetings.  It wasn't like they knew it was going to happen.  But the puzzled look they gave me last month in clinic was a clue I didn't quit grasp.  How do they treat an open wound I have been asked?  Well I think the first order of business       being paged down to the room      more later........

First order of business is to stomp the smoldering fires out.  I compare this to a campfire.
There is a reason the camp ground asks you to throw dirt on your fire before zipping your tent up.  You don't want to burn the forest down.  Sometimes however, it still smokes and is still warm in the morning.  OK fine I get off metaphor explaination.  I was enjoying that though. I like to camp.      We need to get the disease turned back off with a heavier chemotheray (Cytoxan)  to help with this.  This was the drug that we had him on from June to September.  After 10 treatments we stopped the Cytoxan and added Cell Cept.  Over the months, slowly but surely signs of vascular damage in his armpits and the rash that leaves small raised dots on the inside of his hands and on his face, were a clue that maybe we don't have this under complete control.  Gary's armpit is looking a bit better.  They have been treating it with ointment, the name escapes me.  I sought the advice of the Smedleys right away, before we even got to our doctors appointment.  The doctors here are great about including you in on the treatment.  Dr. W asked me, "what do you think should be done?".   She was referring chosing a medication.  There is a medication that just went through a study trail, that had some success but won't be ready for a write-up for awhile.

Rituxan:   Used as chemotherapy against non-Hodgkin's lymphoma. Rituxan will not wear out the bone marrow. It does not cause hair loss or apparent increased risk of infection. Rituxan targets a type of B cell involved which does bad things, causes the immune system to destroy only those B cells.

Cytoxan:  An anticancer drug, works by interfering with the growth of malignant cells. It may be used alone but is often given with other anticancer medications. In addition, Cytoxan may sometimes be given to children who have "minimal change" nephrotic syndrome (kidney damage resulting in loss of protein in the urine) and who have not responded well to treatment with steroid medications.  Cytoxan may cause bladder damage, probably from toxic byproducts of the drug that are excreted in the urine. Potential problems include bladder infection with bleeding and fibrosis of the bladder.

The Rituxan or whatever its called works for some, but they do not know the side effects it has in store for the future.  I considered it because it sounds heavy duty.  BUT I wasn't feeling it and opted for what we knew, cytoxan.  My decision was confirmed when the Smedleys used this particular drug for Mason.  It left them with not so great results.  They are not a fan.  Shhewwww.  I was so glad to have that confirmed.   We are gettng pulses of steroids over the next 2 days.  Scheduled to come home Thursday.  I will keep you updated the best I can.


  1. Oh no....the open sore is from the DM rash?? Is it infected?? Poor little guy! I will keep ya'll in my prayers! I know all to well that feeling of asking yourself why am I here and not wanting to be but then feeling so incredibly blessed to have drs and medical treatment to help! He will get well and be in remission soon....Hang in there sweetie
    Summer :0)

  2. Oh Erika I hate it for you and for Gary! I will be praying extra hard for you guys. Kya's knees opened like that before we were diagnosed. Both of them were covered with a big open wound that kept growing. I pray that they get Gary's case figured out and under control. Hang in there Mama Tiger! You are an inspiration.