Monday, February 9, 2009

Monday, February 9, 2009

Quote of the day: “Health is not valued till sickness comes." ~Thomas Fuller

Mattie had trouble falling asleep on sunday night. He was still wide awake at midnight, but we insisted he had to be in bed. I read him several stories, and then shut the lights. I sat next to him and rubbed his head in hopes that this would relax him. I thought he was falling asleep, but then he started talking. He asked me if he was a cute a baby when he was born. He knows the answer to this question, since I have always told him the story about the day he was born. Mattie was born by c-section, after 26 hours of labor. I shared with him that even my OB told me I had a beautiful baby (I joked with her - c section and all, that she probably says that to all her patients.... she said she did not, and she was serious!), and that I was the first person to touch his toes. Mattie sat in bed last night as I retold the story of the day he was born, but then he asked me a question I wasn't expecting. He asked me if I knew when he was a baby that he would eventually get cancer. I of course said no, and he wanted to know what happened that caused him to get cancer. I told him the truth, which is we have no idea. But then I said to him I know why... I told him because he is just too sweet and the bone bugs knew that they would have a tasty home inside of him. I then went on to explain that the bone bugs met their match inside his body, because the bugs weren't counting on him being so strong. I told him he is doing a super job at zapping out every bone bug. Mattie literally then told me why he is getting chemo now. He said that Dr. Bob removed all the bone bugs' homes, but that there may be a stray bone bug that is floating around his body, and the chemo is going to kill each of these remaining bugs. I was so proud of his level of understanding, and his commitment to the process. He is six and yet is so brave, I have a lot to learn from him.


Last night, Peter was working at our living room table and fell asleep downstairs. I was sleeping in our own room, and of course Mattie was in his bedroom. At 1:30am, I awoke to Mattie screaming. I was sleeping so soundly, so at first it took me a while to get my bearing. But I ran into Mattie's room, and found him out of bed and in a pool of urine. I cleaned him up and the floor. Then I went downstairs and woke Peter up and told him he needed a night in our room so he could get some uninterrupted sleep without jumping up every two to four hours, and I went back into Mattie's room and stayed with him. I was shaken up a bit from all of this, and it took me a little while to get back to sleep, but one thing is for sure, it confirms my feeling that one of us always needs to be near Mattie at night. Especially while he is on IV hydration.


Mattie woke up at 8am this morning and was in a good mood. I carried him downstairs, and made him oatmeal. The ONLY thing he will tolerate to eat. Once he was settled, I started to get ready to bring Mattie to the clinic. Peter helped me this morning with Mattie and he helped us get packed up into the car, which I appreciated since the wheelchair seems to be getting heavier to me these days. Who knows maybe it is lack of sleep, great emotional stress, or sleeping for nights on end in a hospital chair. When we got to the clinic today, we were greeted by Whitney. Whitney is one of Linda's former interns, and she has agreed to work with us on mondays for three hours. Mattie also was greeted by Jenny and Jessie, and they all jumped into a project. Mattie worked on three things today. He continued his work on a box project, he added a beautiful 3-D cloud and sun to the box. Mattie is funny though, because he has about three box projects in various stages of completion at the hospital. The second project Mattie did was on a pottery wheel. This was Mattie's first experience working on a wheel. Mattie created a small bowl that he was proud of. I snapped a picture of him, Jenny, and Whitney working on this project.

Mattie's third project was a mosaic design that he is putting together. It is coming along quite beautifully. While we were working on all these projects, Jenny, Whitney, and I were chatting and helping Mattie at the same time. We were so happy to learn that Jenny got engaged over the weekend. Jenny is a very special person and art therapist, and it makes me happy that she found someone who appreciates her. We all enjoyed hearing about the details of the proposal and hearing about the wedding plans. Mattie was also visited by his 'big brother,' Jey in the clinic. Jey drew a cute teddy bear for Mattie and he wanted Mattie to have it today. I think Mattie inspires Jey to take on these creative projects. Jeff Turner, the HEM/ONC nurse manager also came by the clinic to say hi to Mattie. It is like what I have been writing about, visiting Georgetown is like coming home again.

Mattie received his MTP-PE adminstration in the clinic. The funny part about this, is you may recall that Vistaril is in short supply around Georgetown. Vistaril is the antihistamine that is used to pre-medicate Mattie before MTP-PE. Well there are literally only two vials of this drug at Georgetown, and Dr. Synder made sure that these two vials were secured over the weekend so that Mattie's MTP-PE infusions could happen this week without a hitch. The question becomes what happens next week? The doctors are still working this part out. I spoke with Dr. Synder today about Mattie's very low level of phosphorus. I explained to hear that a whole team of Mattie supporters went out to locate Neutrophos and it isn't to be found. So for now, Dr. Synder is having the phosphorus added to Mattie's IV hydration at night, until we figure all of this out. Mattie is now neutropenic. His absolute neutrophil count (ANC= the number of neutrophils in the blood, and neutrophils are white blood cells that fight infection) is 380, and he is therefore severely neutropenic and is at high risk for developing an infection. A normal count would be 1500 or greater. Dr. Synder feels that Mattie's blood level will continue to drop toward zero this week, and of course if he develops a fever, back in the hospital he will go. In addition, Mattie has lost weight. He is 38.5 pounds. I expressed to Dr. Synder our need for IV Kytril at home. Mattie is so nauseous that he can't eat or drink much of anything. Which isn't going to help stabilize his weight. Dr. Synder understood immediately, and tonight we await our courier to deliver the kytril and the IV fluids with phosphorus in it.

We were at the hospital today from 11am until 3pm. So you are seeing our two weeks "free" is a complete misnomer. We are headed back to the clinic on thursday too. However, as I expressed in my most recent posting, there is something familiar about coming to the hospital, and with Jenny and Jessie around, four hours fly by. We also want to thank Tamra for the wonderful lunch. She spoiled us today. She brought Mattie lots of tempting goodies, such as adorable cookies in the shapes of an owl and a pussycat, and his favorite fresh mozzarella cheese. Thank you Tamra for a wonderful lunch and looking out for us.


On our way out of the hospital, we bumped into Liza (one of our favorite volunteers). Liza was helping out with a patient fund campaign organized by the hospital. Liza gave Mattie a wonderful heart shaped helium balloon before he left. That really brightened his day, because I could tell he was tired when he left the hospital. Parking at Georgetown is a true experience. We couldn't find parking today, so we valet parked. The valet though leaves the lot at 3pm, so literally Mattie and I were wheeling around the parking lot until we found the correct office to pick up our key. It was a lesson in patience, after a full day in the hospital, running around the garage was not what I had in mind. Mattie was a good sport throughout all of this. As soon as I got Mattie in the car and started driving, he fell asleep immediately. When we got home, Peter came down to help us. Peter worked from home today, which was a nice surprise to us. He was on conference calls all morning, and by the time the calls ended, it made no sense to leave for the office, when he could get everything from home.

Mattie was very tired for the rest of the evening. He is also complaining of being sick to his stomach, so the kytril can't arrive soon enough in my book. We want to thank the Bentsen family for a wonderful dinner. The homemade chicken pie was outstanding. I am hoping Tamra will consider adding this recipe to Mattie's recipe book. Tamra also spoiled us with homemade cookies and cupcakes. Thank you for supporting us so generously for lunch and dinner. It made a big difference.

As I type tonight's blog, Peter and Mattie are downstairs building with legos. My life has turned into a large lego block. I think I could build a real home out of legos, that is how many lego bricks we literally have! As we head into tuesday, I will continue to monitor Mattie's progress. As of this evening he looked wiped out and is easily agitated, which is a sign that he could potentially may not be feeling like himself. I end tonight's blog with thoughts sent to me from Charlie, a former student and now friend. Charlie wrote, "I've been reading a lot of comments about Mattie eating or not eating in the blog. It has to be terribly difficult for you as a mother when you know how critical it is to recovery to have a balanced diet and Mattie refuses to eat anything. I am sure it feels like a rejection of love and concern; however, it really isn't. In this case it is a combination of Mattie trying to maintain some control over his environment and his body and a natural reaction to cancer drugs that both suppress hunger and induce nausea. The question is how to get him to take in what he needs without making it the center of attention and even more of a control issue than you already have. What difficult choices for you as parents to make; food is often a battleground, but not normally with as much of a high stakes outcome."