Inauguration Day

Tuesday, January 20, 2009


Quote of the day (Thanks Charlie!): "Become a possibilitarian. No matter how dark things seem to be or actually are, raise your sights and see possibilities - always see them, for they're always there." ~ Norman Vincent Peale


Monday night's chemo started at 11. We were assigned a traveling nurse last night, not one of our usual Hem/Onc nurses. Not that she wasn't a qualified nurse, she was, but Peter and I find a level of comfort in working with nurses who know us and Mattie's history. It just makes the night go smoother. So I reminded the nursing staff that I spoke with the nursing manager a few weeks ago who assured me that we would only be assigned the full time staff. In order to accomodate this request, we were still given the traveling nurse, but Melba shadowed her. Melba is one of our favorite night nurses, and she knows Mattie very well and she even knows the names of Mattie's legs (Steve and George) and arms (Sam and Harold).

It has been three weeks since we had to pull these long chemo nights, so last night was hard. Do you remember how you felt when pulling a couple of all nighters studying or caring for a newborn at night? Well this is how we felt today! Wiped out. The methotrexate infusion started at 11pm and ended at 3am. While the infusion was taking place and most definitely throughout the post infusion, Mattie was getting hydrated with IV fluids. Literally Mattie was up every hour last night going to the bathroom. It was stressful, because you want to capture this urine before it goes everywhere. The highlighter yellow color of Mattie's urine is a constant reminder that the chemo comes out in the urine. Certainly we don't want the chemo touching Mattie's skin or ours for that matter. In fact, Melba last night gave us masks to wear when we disposed the urine in the toilet. She said that the fumes from the urine could be toxic to us. Great, no?! I now try to take whatever precautions the nurses tell me about since my finger was burned last time when I was disposing Mattie's urine (the chemo went right through the glove I was wearing). So we were jumping up every hour collecting urine and every four hours we had to put the urine in collection cups for analysis. So it was impossible to rest soundly. The urine analysis lets the medical staff assess how well Mattie's kidney's are processing the chemo. Until Mattie's methotrexate level is .10 in his blood, he will be required to remain in the hospital and have his urine collected every four hours. His methotrexate level was 1128 today, so we have a way to go! I wonder why we are so tired, but seeing last night in motion explained a lot. In fact, I give Peter a gold star, since he did most of the jumping up and down.

We all attempted to sleep later this morning, but the hospital has its own schedule and by 8am, everything was hopping and people were jumping in and out of the room. So we were up! Mattie had a visit today from Jessie (one of his art therapists). Jessie invited him down to the clinic this afternoon.

Mattie did visit Jessie today and they created another wonderful cardboard box structure, with some creative model magic things inside. Jessie and Mattie had a good time playing together and Mattie even ate a peanut butter and jelly sandwich while in the clinic. But then he was getting tired and was also sick to his stomach. When we got back to his room, we called Sarah Marshall, Mattie's nurse, and she administered him Vistaril (an antihistamine - did you know that antihistamines are used as anti-emetic? I learned something!). Mattie took about a two hour nap this afternoon. Periodically throughout the day we tuned into inaugural activites and the swearing in ceremony. We wanted Mattie to see what was happening today in our Nation's history. Mattie was particularly fascinated with the televised activities because he could identify the Capitol, the Lincoln Memorial, and even Times Square in New York.

Mattie was given MTP-PE last night before methotrexate. I think the combination has worn Mattie out a bit. As we head into wednesday, I am trying to prepare Mattie for the fact that Peter is going back to work on wednesday. I know Mattie has truly enjoyed this bonding time with Peter. On wednesday afternoon, Mattie will also be visited by Dr. Bob. Bob is coming to derotate Mattie's left arm prosthetic back into place. You may recall that Mattie's left arm twisted a funny way in New York, and his arm looks like the letter L. I am happy Bob will be addressing this tomorrow and Mattie will regain the function in his left arm again.

We want to thank my cousin Donna in Boston who sent us dinner tonight. I am not sure how Donna knew about Listrani's in Georgetown, but it is one of the restaurants we occasionally order late night foods for Mattie. Thank you Donna for the great salads and of course the wonderful chocolate! As I sign off for tonight, wish us strength to get through this methotrexate week, and if that isn't bad enough, we have another methotrexate week coming up on monday.