Tuesday, September 15, 2009

Blogging - a luxury

It's amazing to me that after having a baby the following things are luxury items; eating, sleeping, putting on make-up, and showering. So naturally, blogging is at the bottom of the list as I would prefer to smell decent.

Amanda's health has been all over the place with this round of treatment. We have been warned that this is the hardest and most dangerous round (if she gets sick). I'm not certain that it's the hardest. She is having moments where she feels great and the IV drugs are manageable. The leg injections (which we are thankfully done with) were not pleasant and the side effects lingered. But once again, she had a terrible reaction to the methotrexate lumbar puncture. I can't describe the challenge of witnessing your child scream in uncontrollable headache pain and vomiting. I just cried. She did so well initially afterwards that we didn't follow-up with IV fluids at home. It didn't hit until the next day. I will not repeat that mistake again. Once again I am grateful for good insurance coverage and doctors that can get what's needed ordered after hours. I'm also very grateful for family, especially our mother's who are devoting so much time to helping us right now. Amanda naturally bounced back after a good round of IV anti-nausea meds, lots of IV hydration, and forbidden IB profen. I absolutely dread future lumbar punctures. We have one again in two weeks and then they are every three months. I'll talk to her ongoing doctor this week about it. But so far all the other doctors remind me that it wouldn't be wise to risk curing her cancer when they know what works. I painfully agree.

Will, in my opinion, is doing well. However, his pediatrician pointed out that he has a lot of health "quirks" going on and they concern her. We had four doctor's appointments last week between Will and Amanda, three this week, and I think two next week. It's very tiring. Fortunately primary's is working with us to try and get everything scheduled on similar days. The GI doctor wasn't very concerned about his liver, which is good. Will started on a medication to help clear out the remaining billiruben. And ironically, he has an appointment with Amanda's oncology doctor tomorrow, since she specializes in hematology as well. We will hopefully get some answers about the blood clot. He's been a bit more cranky with the meds and schedule chaos. But he's growing (up to a whole 5 lbs now) and is a great addition to our family.

Amanda's had a harder time adjusting to will being home than expected. I guess after five months of intense attention from mom her nose has been pressed in a bit. Erin, on the other hand, must have been more neglected than thought. She doesn't seem phased by the attention her brother gets. I guess it's more important to her to have a mom that is home and no longer sick. I'm still struggling to adjust to all the stress and chaos, but cannot describe what a relief it is to no longer be physically ill. Caring for a cancer patient while ill yourself was an extremely difficult challenge that I hope to never experience again.

1 comment:

  1. Mary Ann, first of all, thanks for the thorough update. Second, I'm tired just reading your entry. Wow you've got a lot going on, but as usual your a trooper and continue to push forward. I'll talk to you soon. Love ya!