Dec 10, 2010

Sorry for no post last night or first thing this morning. We've had busy days and late nights.

Mitchell was very puffy and swollen yesterday but in much better spirits overall. He had a huge smile when I came in, which makes me so incredibly happy. He did, however have a fever during the night and again could not go to radiation. Instead he got another MRI to see if he had a fluid sack that might carry the dangerous bacteria. That cleared, so next they talked about exchanging the temporary shunt for a new one since his cerebrospinal fluid still showed bacteria. So last night he again underwent skull/brain surgery and received a new shunt that so far is putting out clear CSF. Great! Also, he hadn't had a high fever in over 24 hours, so today he went to radiation again.

The poor guy has had to fast for long stretches every day. We've been working in meals at all hours. His digestive system is messed up, so yesterday he received a suppository, which made him #2 a few hours later. Unfortunately the poor guy was so backed up they were literally large rocks. I had to pull them out and felt like I delivered a baby. (I know, TMI.) My poor guy has had it rough.

Today, as I said, he looks better. Heart rate back down, blood pressure down, and fever down. He's in pain, but it's hard to tell if it's from his second head surgery in a week (third surgery in a week altogether) or if he has a radiation headache, or possibly backed up colon again. He hurts everywhere and doesn't know how to tell me.

It's funny though... Of course I know he is sick, but it still doesn't seem like he's THAT sick until I read pamphlets like,"Caring for Your Child With Cancer." Those things make it feel real in a scary way, and I don't want to feel that way. Most of the time I still feel like somehow he's going to pull through this even though he has a highly deadly cancer, hydrocephalus, and now meningitis.

On a lighter note, we're going to have to figure out how to reverse the signs of steroids. My little three year old is not just larger in weight and height, but also looks like a fourteen year old with a unibrow, mustache, and hairy arms and legs!

We watched some family videos last night and are still blown away by how quickly life can change. One month ago today, Mitchell suddenly woke up weak and unable to walk. We've talked about how humbling this has been. When it was his eye, we felt sorry that he would have to endure criticism from peers; then it was the glioma, and we thought how wonderful it would be to just deal with the eye; then it was the hydrocephalus and we thought too bad we weren't just doing radiation/chemo; and now we're fighting meningitis thinking a permanent shunt sounds great! How much we take for granted in this life. Chad reminded me of Mosiah 3:19 which loosely reads, "The natural man is an enemy to God...and will be unless he becometh as a child: submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon him, even as a child doth submit to his father." Like a loving parent to a child, we too must be obedient seeking out the Lord's will for us and pursuing that. Maybe that's a lesson I needed to learn. I also keep thinking of "Ask and ye shall receive." The Lord knows what I want, but I also accept whatever He wants.

Regardless, we love this little guy so much. He is such a special and strong spirit to endure so much. He loves so strongly and can smile when I know I could not. He is a marvelous example.

I love this picture, because it demonstrates the love we have in our home.