Monday, September 15, 2008

Monday, September 15, 2008

Mattie woke up this morning at guess what time? You got it, 4am again! But I am now so used to this process, that I naturally get up with him. Mattie had a slow morning and he even helped change his central line dressing. He is such a good assistant! Then we all packed up our things and headed to the hospital. As we walked into the clinic Mattie found Jessie and immediately started working on an art project with clay. You can see him hard at work with his creation below. Thanks Jessie!

At the clinic today I received some news I wasn't expecting.
The news was that Mattie could not start chemo today because he has a low creatinine level in his urine (52, and average is 70). Creatinine is a chemical waste molecule that is generated from muscle metabolism. Creatinine is produced from creatine, a molecule of major importance for energy production in muscles. Approximately 2% of the body's creatine is converted to creatinine every day. Creatinine is transported through the bloodstream to the kidneys. The kidneys filter out most of the creatinine and dispose of it in the urine. The irony is that Mattie's creatinine blood serum level was normal (0.5), so there is a discrepancy between what is in his blood versus what is in his urine. Needless to say, until Mattie's creatinine clearance level (urine level) rises, he is unable to start chemo. Delaying chemo is actually a good thing though because we want to make sure Mattie's kidneys are functioning well and are ready to process the next round of meds. So we sit here in the hospital getting hydrated by IV fluids, and collecting urine for 24 hours, so that we can reassess his levels tomorrow. If the creatinine level bounces back up tomorrow, Mattie could start chemo, if not, we will be released from the hospital for a week for his kidneys to recover. Who would have expected this today? The process is hard enough, but I think it is this unexpected stuff that further complicates matters. Afterall, none of us really likes the unexpected especially when the unexpected occurs on a daily basis.

Later this afternoon, Mattie had a visit from his buddy Charlotte and her mom, Ellen. Charlotte and Ellen brought Mattie his food of choice, Dunkin Donuts. Remember, one donut a day, and everything will be okay! It was so cute to hear Mattie and Charlotte singing that donut song from the famous e-card I posted on the blog yesterday. Mattie and Charlotte sat together and ate vanilla frosted donuts and started creating things with model magic. We then all played a game called "Guess Who." It is a lot of fun, and we are learning to be good sleuths and ask good questions of our opponent. In the midst of playing, Dr. Jeff popped in and checked on Mattie and entertained Mattie and Charlotte. Ellen thank you for the ice cream too! There is something about ice cream that just makes you feel happy!

Mattie played some more board games with Grammie today and then we had another visitor. Elizabeth Murphy (a mom of one of Mattie's soccer buddies) came and delivered us a wonderful dinner and a gift for Mattie. We can't wait to try the hyperslide tomorrow!

On the electronic front, thank you Barbsie and Jay for the e-mail and Karen, Susan, and Lorraine for the e-cards. Mattie continues to touch lives around the world. Mattie received an e-mail today from Laurance O. Alvarado, a Senior Director at Strategy and Business Development Unit, in Dubai (United Arab Emirates). We do not know Laurance, but he was intrigued by Mattie and his blog.

As Peter and I try to go on and a live our lives amidst all of this, I continue to struggle with what I am required to do. Tonight I attended a professional conference call. Though under most circumstances I would have found this call stimulating and of utmost importance, I instead tonight felt like I was screaming internally. Doesn't anyone understand that there are so many more important things in the world, other than what was being discussed? That there are children and their families in great pain each day? Particularly a family member who they were talking to?! This is quite a life lesson on some many levels.

I end tonight with a special thank you to Ann! Ann called me today and was truly happy to hear about Mattie's good weekend. Thank you for always checking in, for your willingness to drop whatever you are doing to help us, and for using your skills to mobilize and motivate others to help Mattie. Goodnight all, and thank you for your support!