Thank you so much for helping us celebrate Ethan's 3 months of life yesterday by way of your comments and emails. God is using each of you to remind us of His love and compassion for us... thank you for continuing to be His "voice".
We found out yesterday that neither Adam nor I are a match for Ethan's bone marrow. We are each 1/2 of a match (which is good proof that we are his parents!), but not a whole match. Continue to be in prayer that a donor is found easily and quickly.
It's been 2 days since Ethan has started this new round of treatment, and what a struggle it is! The medicine is not really a "cancer" medication. It's really a drug used for adults with severe (very severe) acne. However, some research somewhere found that this particular drug actually helps kill off the bad cells in JMML patients. The tricky thing is that this medication only comes in capsule form. So you have to puncture the pill, squeeze the thick medicine out of it and somehow get Ethan to swallow it. We have decided that it tastes horrible... worse than horrible... because Ethan screams like crazy (turning red and everything!) and moves his body violently every time we've tried to give it to him. No wonder they keep it in capsule form!! The nurse and I tried to mix in a little baby food (applesauce) with it last night, but my sweet little boy wasn't fooled. It was terrible. We weren't even sure he got the full dose! He's supposed to take it like this for 10 days and so far it's only been 2 days.... and what a rough experience each time. I'm not sure the solution, as I will talk with the doctor about it today, but this is supposed to be the "treatment" that keeps him in good shape until the bone marrow is ready. I am not sure how effective it will be if we have the same struggles we've been having of just getting him to swallow it. It's so bad that the residual substance that was in his mouth got on his bottle nipple and he screamed every time he started to taste the nipple. So, of course we replaced it... but then again, it's hard to tell how much of the dose he's actually swallowing. We obviously need a better solution. Tonight we're going to try to mix it with cherry syrup that they have, but I'm not convinced that will work either... though I am praying it does. The little guy needs the medicine... and we need to find a way to get it inside of him without making him absolutely miserable (trust me, it would have broken your heart - if not scared you - to see his reaction last night!).
In other news... I was thinking random thoughts this morning in my state of sleepiness. I thought that I wasn't getting any sleep just being a regular mom to an infant at home... try attempting to sleep when nurses are coming in every hour to check various things going on with your baby AND also having to get up to feed him, etc. Man, I never thought I'd say I missed the OLD version of my sleepless nights. But anyway, I digress... I was thinking random thoughts this morning about the ways our lives have changed in the non-serious areas. How many times have I gone to the doctor's office as a new patient and filled out a 'new patient form' and breezed through all of the questions like... "Have you or any member of your immediate family ever experienced any of the following?" and then there's a laundry list of serious/chronic illnesses. I never give those a second thought... they are always "NO" or "N/A" for me. But now, I will actually have to pay attention and check of "yes" to cancer and/or leukemia. That's just such a strange thought. Or what about those commercials or billboards you see that advertise certain resources that are available for parents of kids that have cancer. Adam and I are one of those sets of parents now. Or what about a bumper sticker that you see on someones car that says "Donate Life" or a license plate logo that says "Cure Kids Cancer". I am a parent in which those things now hold special meaning. It's just funny how your perspective opens up and how your life is changed - even in the little things - when something like this happens.
So if you see a sticker, billboard, or even a blood drive sign... pause for a moment and say a prayer for the families in which those things hold great importance. I am forever changed with regards to empathy and compassion for those who have traveled this road we are on, and those who one day might have to as well.
My continued thanks for your continued prayers. The Lord is using you to help us have the courage and strength to continue each day.
A small p.s. - It's my understanding that you can subscribe to Ethan's blog by using the "Atom" link at the bottom of the this website. You can click on the link called "Subscribed to Posts (Atom)" which will then open an RSS window. In the right-hand column of the RSS window, there are several ways to subscribe to the blog under the heading of "Actions." Apparently, once subscribed, you would get notification whenever I updated the blog. If that's too complicated, don't worry about it! You can still just come check it whenever you'd like. But, in case anyone was interested, I thought I'd pass the info along.