I wish I could tell you that he's improving each day, but unfortunately the opposite is true. Although not unexpected by the nurses and doctors it has definitely surprised me at how quickly things have changed.
As one of the nurses put it, "It's as if your insides have been run over by a truck."
When I arrived this morning the nurse was just giving him platelets and pain medication. In spite of him being vigilant with the special mouthwash routine he has developed very painful mouth and throat sores. Actually, one of the nurses explained the other day that the sores are throughout his intestinal track. I guess that's where the getting run over by a truck comment comes from. Today's nurse said the sores are inevitable with the chemo he's had...it's just a matter of the degree. I know he did everything within his power, but he's still in a lot of pain. They will be hooking him up later to a pump where he can press a button and self administer the pain medication. He's on a soft and liquid diet.
Thankfully, as I type this he is sleeping from the pain medication and the Benadryl. He has also broken out in a red rash and in places has scratched himself raw which is not good with no immune system. This is also a side effect of this particular chemo.
Sitting here watching my child (no matter how old, they are always your child) suffer this way is very difficult. I can't help but question why. He's been through so much since being diagnosed in October 2009. He had six months of ABVD chemo, weeks of radiation, almost three months of ICE chemo and now the clinical trial chemo regiment. This is by far the worst.
If only there was a 100% chance of this working because anything less would be a very cruel joke after all he's going through.
I wish you could meet him. I realize I'm his mother, but indulge me for a few moments. Reid is quiet and easy going with a very good sense of humor. He rarely complains. I believe these personality traits have helped to get him through some of the rough patches. But today there's no smile on his face.
The sores will not get any better until he starts receiving Neupogen which helps his body produce more white cells. That won't be until day +5 or day +7 (in his case the nurse wasn't sure which until she looks it up) and then it will take a few days for the sores to begin to heal after the white count starts to go up.
The nurse has assured him that things will get better even though it doesn't seem that way right now. He tells me this is Hell and he will never go through this kind of treatment again. At this point I don't blame him one bit. I feel helpless sitting here watching. I am so grateful to Keith for taking time off from work to sit here with me last week. He went back to Austin on Saturday and I really miss him today with the change in Reid's condition.
Reid also developed a cough a few days ago and is receiving breathing treatments 4 times a day and oxygen for shortness of breath. This is a little concerning to me, but so far his lungs are clear and that is good news.
All the nurses here are very good, but today's nurse is super good. Very attentive and caring...the one you'd want if you were feeling like crap.
I got here before the bad weather today which is good since it's getting very dark and dreary now and with my eyes I can't see well enough to drive in the dark anymore. I might drive locally, but not on the freeways so now I'm worried about getting home. I hope the weather clears. I just checked with the motel where we have reservations beginning on the 21st to see if I could check in this week and be closer to the hospital, but it's not possible with the rodeo still in town until the 20th. I hate having to leave early each day to beat rush hour traffic and darkness, but there's no choice.
Reid's awake now and they just hooked up the pump and a blood transfusion. It's already helping some. YEA!
As much as I hate all of this I was reminded yesterday that at least there's a possibility of a cure for Reid. My friend Connie isn't as lucky. I found out yesterday that she's been diagnosed with ALS (Lou Gehrig's disease). Actually, her mother was a friend of mine that I met shortly after moving here in the early 90's. Annette died of Lou Gehrig's disease around 7 years ago. Connie was the one that cared for her mother. Talk about unfair, but no one ever said life is fair.
I feel like I should end this on an upbeat. I remember my niece who was a television news producer saying that they always tried to end the newscast with something upbeat, but today I'm at a loss. I do have an adorable picture of the cat to share, but it's on the home computer. I'll share it soon.
Thanks again for your support and prayers...Betty