Saturday, July 25, 2009

Yesterday was a BUSY day! Saw lots of specialists and just had lots going on. After moving us to room 487 they moved us AGAIN last night to room 457! Hopefully we'll stay put here!!

They did a bone marrow biopsy to check his marrow levels and see what is causing the low platelet count. They are also going to check his marrow against a medication they are thinking about starting him on, to see how it would respond.

His insulin numbers have been within normal-ish ranges for the last several days. And his kidneys are doing good. I haven't seen a liver doctor for a few days so, I have no report on his liver.

The Ear, Nose and Throat (ENT) Doc came in yesterday to assess Kameron for the trach. He was checking his thyroid to see if it would be safe to do it. (and also take into consideration his platelet count and blood pressure). He wants to wait a few days to see if things improve so it will be safer to do the surgery. It was a good day for me to wear my BYU shirt, the ENT grew up in SLC, is LDS and went to UofU. (how's that for a bunch of acronyms!? ha!) I love having LDS doctor's, I know that we're on the same page about a lot of things!

So ... we will continue to wait and see on that.

Now ... this medication they are thinking about putting him on is Cytoxan. It is actually a chemo-therapy drug that they have found effective in treating autoimmune diseases. It is not a drug they use lightly. It will basically attack all of his cells, good & bad. It's a tough medication that has a lot of risks. One is kidney interference and another is it can cause either sterility or infertility. Yesterday I was having a HARD time with this. I didn't want to have to be the one to make the choice of possibly damaging his goods, which may only give us one biological child. I think that if we had 2 or 3 kids, it would be a different story. But, after I talked to several people and I remembered some promptings that we have both had, I know that things will be okay. This medication may be what we have been praying for to get his lupus under control. And from the research Holly did (thanks!!) it is RARE for complete sterility to occur. SO ... if his bone marrow is going to respond well to it - we're going to go forward with it. I still get nervous when I think about it sometimes just because there are so many risks but, he is only going to be on it for a year, most likely. So that lowers his risk of the more serious side effects/risks.

He is also BACK on the sedative. Last night he pulled out his Arterial Catheter Line (ART) in his wrist. SO, this morning he is sleeping again.

ALSO! His platelet count went UP!!!!!! I am so ecstatic about this!! Yesterday his platelet count was 25,000 (I think, if I remember right) and today his platelet count is up to 38,000!!! That's a huge jump!! So, keep praying his platelets will continue to increase! They aren't sure if it's from the IVIg, I haven't talked to a doctor about it - just the nurse. But - it makes sense to me.

So, things are continuing to look a little better each day, which I am very grateful for. No other news from here.


Julina said...


In addition to admiring your faith and persistence and love for your husband, I gotta say I admire your ability to keep track of so much information, so many doctors and nurses, so many changes... I don't know if you're writing it down, if you're keeping it in your head, or what, but it makes *my* head swim just to think about it.

Anyway - thanks for keeping us all up to date. And keep doing what's right for you and your family :-)

Love ya-
Cousin Juli

Ashley said...

I was going to ask you for the information on the drug; Mike has access to the the web sites that doctors have regarding medications. Especially ones for cancer.

I'm glad you feel peace now. Let me know if you need to talk.

The Tolman Family said...

I'm so glad things are going up, prayers and fasting is working. I'm so happy for you. You are so strong I admire you alot for everything that you have been through! I agree with julina I admire you for keeping us updated. :D

Summers Family said...

Its good to hear things are going good today! I hope it stays that way... Good luck with the new meds!

Lori said...

I'm glad you feel good about your decision. Has Kameron always had lupus? I never knew he had that. Sorry for the dumb question, I was just surprised to read that.

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