Tuesday, May 5, 2009

Tuesday, May 5, 2009


Quote of the day: "The brick walls are not there to keep us out; the brick walls are there to give us a chance to show how badly we want something." ~Randy Pausch



It is four days until the March for a Mattie Miracle. The registrations and contributions continue to come in and we are in awe of the outpouring of support for Mattie. I connected with Ann today, and Team Mattie is working extremely hard at sorting t-shirts and organizing items for the walk. Ann went into the classrooms today at St. Stephen's/St. Agnes school and she and the kids designed posters for Mattie's walk. Here is an example below! I think the kids did a great job coloring these posters!

Mattie went to bed around midnight on Monday. Before Mattie went to bed, we played several rounds of Candyland and also the game, Trouble. However, the question you may be asking yourself, is how did Mattie take to the fact that he was scheduled to see a pediatric surgeon today about his lungs? I realize I need to talk with Mattie in stages about his upcoming lung surgery. So in Monday's conversation, I reminded Mattie that he took scans back in March. I explained that in the scans they found something, but we are not sure what it is yet. Which is why we were headed to see the doctor at Children's Hospital. I kept it simple, and he handled this very well. I figured telling him he needed surgery and giving him the whole picture now, wouldn't be helpful. In some ways, I think Mattie handles the situation in a rather matter of fact and brave manner, which makes it a lot easier as a parent to handle. However, with Mattie he processes things, and will soon begin to ask questions.

Mattie had a restless night of sleep. At 4:30am, Mattie woke up to go to the bathroom. At which point he was screaming with a stomach pain. However, the screaming seemed more intense than his usual nausea. I then felt his head, and he was very hot to the touch. So I grabbed the thermometer, and found out that Mattie had an 102 fever. Mattie was very upset, and he did not want me to leave his side, but I knew I had to call the doctor. So I went to wake Peter up and he sat with Mattie while I called the hospital. Dr. Toretsky called back within minutes, and told me to take Mattie to the PICU as soon as possible. I was a bit disoriented, but I quickly put on clothes and packed things up. Somehow this whole morning was quite stressful for Peter and I, especially since Mattie was screaming all the way to the hospital and into his PICU room until he received demerol. Mattie did not fight us though, since I think he was eager to receive medical help.

Once in his PICU room, blood tests were run, he was examined, and he was administered demerol. The demerol helped with his intense stomach pain instantly. Mattie was then put on antibiotics and within a couple of hours his fever went away. Mattie also needed a blood transfusion today since his hemoglobin level was very low. Mattie slept until 11:30am, and then my parents came to visit and Mattie woke up. He played with them for several hours, doing a pirate puzzle and then designing pirate gold coins out of model magic. He had a good time doing this and even Katie, Mattie's wonderful HEM/ONC nurse, joined in while she was monitoring Mattie during his blood transfusion. Mattie then had a lunch of pancakes but after lunch Mattie shut down and slept for several more hours with me right next to him. I was practically wedged between the wall and the bed. Linda came to visit Mattie and helped me get out of this crack, and gave me a break for a while, while she stayed with Mattie. Mattie slept through a visit with Jessie and most of Linda's visit. Linda brought Mattie a wonderful pretend money set for his treasure chest that he designed, which is an excellent way for Mattie to learn about numbers and currency. Toward the end of Linda's visit, Mattie woke up, because Peter was able to wake him up. I had absolutely no luck in that department. I think between not sleeping well last night, and then being premedicated for blood products, the combination knocked him out.

Mattie was groggy for a while, and decided to camp out on Peter's tummy until he was able to wake up. It was very cute. Jessie and Linda also told me that while Mattie was sleeping today, and I was sitting in the parent lounge, Mattie called out for Peter in his sleep. He smiled and then went back to sleep. A priceless moment.

I want to thank Tamra for visiting today and for her kindness to bring me lunch. That was very thoughtful, and the cupcakes were a hit with both Mattie and I!

While I was in the hospital with Mattie, Peter did consult with Dr. Guzetta at Children's Hospital this morning. Though I wanted to meet this surgeon, I realized that Peter had to keep the appointment today because there would never be a good time to reschedule and time is of the essence here. Peter found this visit very helpful and insightful. I think Dr. Guzetta basically did confirm for us that the lesions in Mattie's lungs are Osteosarcoma. It wasn't easy to hear, but the truth never is. He also is preparing Peter and I for the fact that there will be other lesions that will be found during the lung surgery, lesions that are too small to be picked up on a scan. He said from his experience, once there are measurable lesions on a scan, then most likely there are others not yet detectable. Dr. Guzetta agreed with Dr. Chahine's surgical plan and Dr. Guzette understood our allegiance to Georgetown and is even willing to do a co-surgery with Dr. Chahine at Georgetown. That is certainly a wonderful offer to have two qualified surgeons in the operating room, but I am also sensitive to how Dr. Chahine will feel about this. So we have to pursue this further. Both Dr. Guzetta and Dr. Chahine are recommending a sternotomy for Mattie. However here lies the problem. In the scans, Mattie does not have any visible lesions in the hylem portion of the lung (this is the most posterior portion of the lung lobes). If he did have lesions in the hylem, then a sternotomy isn't recommended, because the surgeon wouldn't be able to physically access these lesions and remove them. Lesions in this region of the lung can only be accessed through thorocotomies (which enter the chest wall through the ribs instead of the sternum). So what is the problem? The problem is right now there are no visible hylem lesions, but what if when doing the sternotomy they find there are nodules in there? There will be no way to remove them in the sternotomy, which is risky because that would mean the lesions would remain in Mattie's body until it healed and a thorcotomy could be scheduled. I personally do not like this risk, but both surgeons are recommending this option as the easier of the two to heal from. I am left with a lot of uncertainty. We will be consulting with Dr. Moir at the Mayo clinic too, and we will be curious to hear if he too recommends the sternotomy approach.

As the evening approaches, Mattie is playing again with my parents, and I have removed myself from the room. Mattie has been very snappy and nasty at times to me today. Which is fine, he is entitled, but I am too tired to maturely handle it, so in those moments I must removed myself from the situation.

It is my hope that Mattie will be discharged from the hospital tomorrow. This will happen if he doesn't have a fever, his white counts remain steady, and his 24 hour blood cultures remains negative.

I would like to end this posting with a message from my friend Charlie. Charlie wrote, "You certainly have faced your share of brick walls and I have great admiration for your skills and Peter's in navigating your way around, through and over them. I was sorry to hear that once again Mattie had such a severe reaction to the medication; let's hope that this means his immune system is being stimulated in a significant way and will be on guard against any recurrence of the disease. I have to tell you I admire your ability to balance wanting to let go anything that isn't important with the need to keep Mattie responsible for his actions. I think you do a wonderful job with this; it clearly is difficult but I think it will pay great dividends when Mattie is able to rejoin his friends at school and other activities. Fortunately Super Mattie has some great tools in his friendship arsenal including his endearing nature and his willingness to share kisses with those he cares about. I hope he is well enough to come to the march on Saturday; I know how disappointed you (and all of us) will all be if he cannot attend."