Tuesday, July 19, 2011

Skyler was admitted yesterday for another round of high dose methotrexate.  I wasnt as nervous going into this as I was last round because he did so well with it before.  Besides the mouth sores Skyler didnt really have any other side effects last time.  This time he has been extremely nauseous though even with IV zofran around the clock.  Other than that things are going pretty well.  He doesnt like that he has to get up every two hours to go to the bathroom, but thats ok things could always be worse.

I did talk to the infectious disease team today about switching antifungals and they did come up with another drug we could try again.  They want to switch him over to a drug they commonly use to treat fungus that doesnt cause fevers.  He has been on this one before but it made his liver enzymes shoot up really high.  They think he will do fine though because he was already septic when they used it before and his liver wasnt working properly anyway, so since he is in a different place they think he will do fine.  We are going to keep a VERY close eye on his levels and if they start going up then we will stop it.  Our others options are to either just stop his antifungals all together or to keep him on the one he is on already.  The problem with keeping him on the one already is we dont know for sure if this is what is causing the fevers and we dont want to mask any other infection with the thought that the fevers are just because of a drug reaction.  The problem with stopping it all together is we dont know if he will become neutropenic again with this phase and if he does he needs to be covered with something.  Something new I found out today is that no one really knows how long Skyler should still be on these antifungals.  They dont know if they are over treating or if he still needs to be on them for awhile.  I found out today that having the fungus engulf the liver and spleen and kidneys like it did is very rare, and they really dont know how long to treat it because people dont usually survive what Skyler went through.  This hit me hard and brought back all those emotions and the reality of just how sick he was.  I try so hard not to think about it because I usually break down when I do so this morning wasnt great.  But I did decide that we need to try this new med while we are inpatient and see how he does.  We can always stop it if we need to and the best part is it is oral not IV!!!  That means that if he does ok on this I dont have to hook him up at all.  Holy cow this would be so nice, its kind of hard to imagine but I love that thought.
                                Getting a push of Vincristine

Starting the bolus of Methotrexate

A nice syringe full of poison

After the bolus of chemo they start him on a drip of it for the next 23 hours.  Its light sensitive so they have to cover it with a brown bag.  The bag next to it is some of the LARGE amounts of fluid he gets

The barf bucket has become his best friend again

The Vincristine makes his legs hurt all the time so grandma was nice enough to give him a good leg and foot massage.

He was able to have one of the therapy dogs come today.  He loves these dogs and he loves to feed them.

Love this smile!

And this one.  Even though he doesnt feel good alot of the time he still has been a happy sweet little boy.  And if you notice in this picture he lost his first tooth sunday!

He even got a dollar from the tooth fairy.  My baby is growing up! (please disregard the mess on my bed I was packing to come here)


suzie said...

CUTEST FLIPPIN KID IN UTAH........SERIOUSLY!!!! I don't even "know know". Ur skyler...but he has captured mine and my kids' hearts 100%!!! Amazing amazing amazing little boy!!

Ur both kept in our prayers.....ALWAYS!


Laura said...

I've been following your blog for a while, and you have an amazing son! You must be so incredibly proud of him, and he is so lucky to have such an awesome Mom, too!

Erin said...

Oh my goodness, I see hair!! Nolan finds that a heating pad is his best friend when he's having pain from vincristine. It might help Skyler.

I hope this round goes as well as the last, and we will keep our fingers crossed that the new anti fungal doesn't hurt his liver again.


Jenny MacDonald said...

There is nothing wrong with "breaking down." Get it all out and I bet you'll feel and sleep better.

So glad to see that he is doing well!

Chelsie said...

He is just so sweet. I'm so amazed at this age, they can look simultaneously so grown up and yet so little. I guess it is just that we can't believe our babies are so big, and that they look like a little adult.

At any rate, he's so adorable.