Friday, January 30, 2009

Friday, January 30, 2009

Quote of the day: "You can learn many things from children. How much patience you have, for instance." ~ Franklin P. Jones

Charlie wrote this to me today. "Vicki, my first thought on reading the blog was that the social worker would have fit in really well at Sloan Kettering. She certainly did not have any concept of what is required to deal with ill children. Even though it is unfortunate that she is at Georgetown, we can be grateful that she doesn't work with the kids; she works with adults elsewhere in the hospital. Anyway, that segues into my thoughts on it, which is that while "patience is a virtue," it is probably one of the toughest to consistently portray and I simply don't know how you do it. Your exhaustion came through clearly and even with that, you managed not to be rude to the clueless social worker, you got Mattie through another day (explosions and all) and got yourselves ready to come home. I think that is a marvel of achievement. I vow to be more patient with some folks who are simply driving me crazy; you set a high example for us all to live up to."

Mattie actually woke up early today despite going to bed after midnight. By 7am he was stirring. I was too tired to move, so I asked Peter to watch him for a while before he had to leave for work. I stayed in Mattie's room last night with him, so that Peter could try to get some rest. Mattie did not want to get dressed today nor did he want to leave the house. So we stayed at home and did all sorts of activities. I can assure you though that being confined to our home/hospital day in and day out can get very wearing and at times I feel like I am going stir crazy. Most days, I don't have the opportunity for adult conversation or connecting to the real world. It is frustrating and at times depressing.

This morning Mattie and I had the opportunity to work on a beautiful lego set that Peter bought for him. The set, when it was done, made two charming houses. The houses were intricate though, because they had inside details such as a spiral staircase. It took me quite some time to figure out how to help assemble these structures, because to me many of the pieces looked alike, and I have trouble seeing in three dimensions. But we were persistent and successful! Mattie is so pleased that these new buildings could be easily attached to his lego hotel that he received in October from FAO Schwarz, NYC. Mattie added these structures to his train village, and he wanted me to take a picture of the hotel (which is red, with a yellow and white awning) attached to his new buildings.

In the midst of building with Mattie today, I had several e-mail conversations with Mattie's doctors. Not about his medical care, but about the logistics of being admitted to the hospital on monday for chemo. I requested that we be admitted directly to the PICU this coming monday, like we were this week. When you get directly admitted to the hospital it makes life SO much easier for the family. There may be more effort needed on behalf of the hospital staff to accomplish a direct admit, but then again isn't this part of the service they are providing us? If we do not get directly admitted to the hospital, then the following happens. Basically, I would need to take Mattie to the clinic first. They would need to do blood work there, give him a check up, and then wait for the blood test results (which mind you usually takes about two hours to complete all of this) before we can officially be admitted to the hospital. At which point, the clinic then gives me the admissions paperwork which I need to hand carry to the admissions department. There is something so flawed with this process! Though Georgetown sees us practically every week, I still have to pay a visit each time to the admissions department to answer the SAME QUESTIONS and process the same paperwork to be admitted. I swear there has got to be an easier way for us returning customers! Mind you I am usually schlepping Mattie with me from the clinic to the admissions department, and finally to the PICU. By the time all of this is done, I am wiped out, it has been a full day, and Mattie and I have had a full tour of the hospital! So I asked the doctors today if they could make our admissions process easier for us. I requested that all our admissions be direct admits. Well what I considered a simple request (since we have done this before) turned into a big deal. I was quoted hospital policy and worst of all I was given the explanation that a bed might not be ready for Mattie when he arrives because the hospital is at full capacity. So instead of the hospital having to figure this out, it seems much better for them to have a cancer patient just hang out in the clinic and to wear all of us out in the process until a bed opens up. I was livid today, and my e-mails to the medical group were professional but strong. There is so much about fighting cancer that is debilitating, must the experience of how you get into the hospital for treatment add to this burden? Apparently so! Dr. Synder knew I was unhappy and she went the extra mile to contact my patient advocate to help iron out my request with the "powers that be." I still did not get what I requested, but at least someone from admissions will meet me in the clinic so I don't have to trek there on monday. I want you to know I have already addressed this issue in writing with the hospital over a month ago, but so far nothing, not even a response, has been given regarding my request. I can't be the only family member who finds this admission process ineffective, but once I get something in my head, I am persistent. To me, I am not only advocating for our admission, but for the admission process of all chemo patients and their families.

At around noon today, Mattie had a special visitor. Lana, one of his first preschool teachers from RCC, came over and delivered lunch and spent part of the afternoon with us. It really helped to break up the day! Thank you Lana! Mattie showed Lana his trains, his lego buildings, and even had Lana check out the birds that were feeding outside our window. Mattie was proud to show Lana our family of Red Headed Finches! Lana gave Mattie some special gifts. Lana's son, Sean, is a Navy pilot and was stationed in Iraq for many months. Sean gave Mattie his patches that he wore on his uniform. I think this gesture is so meaningful, generous, and inspirational. I have great respect for members of our troops, and we are honored to have these patches. One of the patches has half of the American flag on it and the other half of the patch has the Iraqi flag on it. Lana also let me know that the owner of the Dairy Godmother, a well loved ice cream parlor in Alexandria, VA, reads Mattie's blog. The Dairy Godmother herself sent along a magic wand for Mattie to have along with a some vanilla ice cream. Tonight, I snapped a picture of all these special gifts, Mattie eating the ice cream, holding the wand, and wearing Sean's patches. It can't get better than that!

Thank you Lana for the puzzle and for the travel sized version of the game Sorry. This is one of Mattie's favorite games. Also thank you for a wonderful lunch! I loved the salad (that chicken recipe should go into Mattie's cookbook) and the olives!!! and Mattie ate a whole bowl full of the mac and cheese you made him. Thank you for all the goodies and most of all the company! Mattie also wanted to surprise Lana today by assembling a large puzzle of the world by himself. So Lana and I went downstairs to talk, and then Mattie called us upstairs when he was done. He did a great job with the puzzle! It was wonderful that he played by himself for a little while, this is a skill which we are trying to get him to relearn.

Mattie also had a visit today from JJ (our resident Jack Russell Terrier). JJ was very interested in Mattie's lego creations and puzzles and if JJ could use his paws like thumbs, I think he would be building right along side Mattie. JP, JJ's owner, brought Mattie some wonderful pasta today with shrimp and a pizza. So Mattie had a great eating day. Which is excellent, because we want to keep his weigh steady!

Mattie also opened two packages today. His feline friend, Brian Boru sent along a train that Mattie loves and has already added it to his train scene. Mattie also liked the magic trick book. Mattie's Grandma and Grandad in Boston sent him homemade gingerbread cookies, which are one of Mattie's favorites. The cookies were in the shapes of a gingerbread boy, cat, and bunny and some of the cookies had a big M on them for Mattie. He liked that part. Mattie selected a cat to eat and devoured it. I took a picture of him with his cookie selection! Mattie also loved all the other gifts that were included with the cookies, and we look forward to putting the puzzle together and learning some magic card tricks!

Mattie and I spent the afternoon working on a 500 piece puzzle, building, chatting, and playing games. When 5pm hit today, I needed a break, and Mattie decided to watch the movie, Snow Buddies. He enjoyed that a lot. When Peter got home tonight we all had a nice dinner together thanks to the Strombus family. Mattie loved the ravolis and of course, the chocolate dessert is helping me function enough to write the blog. I am not sure if there is a technical addiction to chocolate, but if so, I freely admit I have a problem.

After dinner, Peter sat with Mattie and watched a cartoon or two, but then Mattie started getting tired at 9pm. Totally unheard of! Mattie is now sleeping! As I sign off for the evening, I am happy to report that Mattie has another fun weekend in store for him. He has a piano lesson tomorrow morning and then one of his former babysitters, Julie, who moved to NY is coming over to visit with him so Peter and I can have a couple of hours in the afternoon to ourselves. Peter and I are exhausted and it is our hope to gain back some energy this weekend in order to survive another long week at the hospital. Though in all reality, I think our level of exhaustion is so profound, it may take many months to recuperate.